It is 4am. It is not uncommon to wake up at this time. In fact, this is an everday occurrance. It is either my friend and pain-buddy, Skye, or myself that wakes up with the need to go to the toilet.
My head is thick. I cannot even think properly. The pain is severe. My right hip feels like someone has poured oil over it and set it on fire. This feeling too under my left breast. My head is pounding and my eyes feel like they cannot focus and are painful.
This is a common scenario. It is only the areas of pain that differ most days. I put my head in my hands and I wonder how I will get through the next 20 – 40 minutes, until the painkillers do their job and kick in!!
Sometimes, though, depending on times, I will wake up with only the pain. Always the pain. For as long as I’ve had this it’s been about the pain!
So, this is MY story. This will be shared because I WANT it to be shared, because I WANT people to know about the pain, the anger, the hurt, the love, the helplessness, the degrading, the embarrasment and all the other feelings that are never far from my everyday living.
I have always wanted to write about my experiences, about my feelings, I have always wanted people to KNOW – I have made half hearted attempts at letting my friends (close friends, Facebook friends, family, acquaintances, anyone that would be willing to learn more), and of course last, but not least, my fellow sufferers too, not so that they can give me tips on how to ease the pain, or tips on how it may be my pillow, or that maybe the painkillers are “giving you the headache – have you thought of that?”, but because I WANT people to try to understand a little about this disease, this condition. How debilitating it can be, how depressing it can be. How rare it is, WHAT it is. I want to share MY story. I would hope that in doing so, it could maybe help others understand some of the things I do, why I maybe, sometimes do them at all – I hope it can also bring a smile, a laugh, a giggle because, yes, there are those too. I am sure that some of you will read it (hopefully) and think “hey, I’m sure she’s talking about me”, or “I think she’s lost it” or even “oh, I didn’t realise…”. That’s all fine. I want everyone I know to read my story.
I also need to say that I was inspired to finally, after 9 years of wanting to do this, finally, finally, finally, after reading a young girl, Niamh’s blog, to start doing it. So thank you for that dear Niamh.
Well, here we go. Hope you enjoy.
I had not long gone into hospital for minor surgery to have a biopsy done due to a swelling on my right cheek. They went in through my mouth – on the day I needed to be at the hospital in Manchester, I arrived, only to be told there were no beds available. I very patiently explained to them that I had just spent two hours, caught three buses, not to mention the bus fare, and was not about to go home! So, I sat in the waiting room for two hours, until they found me a bed, which should have been oral surgery, but instead I was promoted to “Gynaecology Surgical Ward”!! Anyway, this may or may not have any bearing on what happened after, but I’m telling it anyway. I was told I would be operated on the following morning and that he (the surgeon) would like me to stay in for another night. So, all went according to plan, I had my surgery, was visited later that evening by the delightful oral surgeon and told that there were no untoward findings, he just could not remove all of it due to nerve entanglement or some such. He told me that I could go home in the morning, that he had prescribed some painkillers, a short course of antibiotics, just in case and a mouthwash. Please remember that back in those days, I was still in full control of my faculties! (Yes, that’s a joke, I think). I took a taxi home, which was super expensive, but no choice. Well, when I got home and ready to take my meds, there were some Co-Codomol and a mouthwash, but no antibiotics. I wasn’t happy, I was after all the breadwinner in the family and was doing okay, doing temping work which was great because I could choose when I worked and also where. So, I wanted to get back to that as soon as possible. I phoned the local surgery in Rochdale in the morning and spoke to one of the team who told me I didn’t need antibiotics. So, that was that. The CONSULTANT said he was prescribing them, one of his JUNIOR team thought I didn’t need them. Who was I to argue with a medical person, right? Anyway, fastforward, a week later and I had a really bad ‘flu like symptoms, then it cleared up and I had an upset tummy on and off for weeks. That seemed to clear and it was a sore throat. The site that they operated on seemed fine. Okay, that’s that part, just for your information. Will refer back later to this section.
I was ready to start working again in about two weeks I thought. Nope, I got a call from my agency saying they had a job going for a month. I needed to get back to work, so took it. I am so glad that I did. I worked there for the month, then was asked whether I would like to be taken on permanently. Wow, that was great news. I loved my job! Well, I think I did, but I really did LOVE the people I worked with. They were awesome and we had so many laughs and chats and worked hard too. It was a local job too, which meant just a short bus ride and I was at work. About three weeks into my permanent position, I said to one of my co-workers, who also by that time was a friend, that I didn’t feel “right”, I had prickling under my breast area and I had a sore throat. This carried on for a couple of days, but the prickling was not going and I was starting to get a tight feeling under my breasts as well.
The following morning, I had to call in to work to let them know that I was going to the doctor. I got an appointment with my doctor and after she listened to my symptoms, she said it sounded like Shingles. Which did in fact, cross my mind too. So she prescribed some Amytriptilline and told me to take that for the burning and if the spots appeared over the weekend, then to phone her on Monday, if no spots appeared and the symptoms were still there, to come in to see her again. Made sense to me.
On the Saturday after my initial doctor’s visit, I was sitting on the toilet (I know, right), and noticed that the side of my left foot felt “funny”. Not thinking anything of it, I went to lie down and woke up with the “funny” feeling still there. I bent down to rub my foot and realised the side of my foot was numb. I couldn’t feel myself rubbing it. I was not overly concerned but by Sunday my whole foot was numb. And… still no spots to indicate Shingles.
On Monday morning I woke up and when I sat on the edge of the bed, I realised that my whole left leg was numb. I went to have a bath before heading off to the doctor, the water was just short of boiling, and I COULD NOT FEEL IT. OK, I have to be honest, I was a bit freaked at that one. I tried to diagnose myself, but all I could think of was a trapped nerve somewhere, however, there was no pain whatsoever. I called the surgery and asked for an appointment. I could not walk properly, so had to use my mom’s walking stick – still brings a smile to my face when I think of it. My GP started pricking and prodding and I felt nothing. Nothing at all! She sent me off to the infirmary (local hospital) A & E, with a referral letter. To the ORTHopaedic Dept. I am no doctor, but I didn’t think it was orthopaedic’s for goodness sake. It wasn’t my bones that were displaying signs. Anyway, I was examined by a really nice Scottish doctor, he did the same prodding and pricking and then asked if I would mind him doing an anal exam. Whaaat??? I think it was about this time that my dignity flew right out of the window (and has never really come back). Actually, in all fairness, it wasn’t too bad really. He was ever so discreet. He then said he was calling in the Senior Consultant and asking her for a second opinion. She came in and did exactly what he’d just been doing for the past 20 minutes, asked the same questions. Felt almost like they were trying to make sure I wasn’t telling fibs haha. So, in the end she explained to me that it wasn’t orthopaedic, but rather, she thought, neurological. Hah, so I was right, pinched nerve, right? She said she was going to Admit me for further tests.
I was taken to a ward where I was told not to undress until I saw the on-call Consultant who would have to admit me. So, I sat there from 3pm until 7pm when he breezed in with two of his juniors. Do you know out of all the scenarios that I have in my mind over the past 9/10 years, this is still the clearest in my mind. He introduced himself, and then forgot that I was there. He spoke to his juniors, he took out his pins and poked and prodded. He told me to get up and walk across the ward. Well, by this time, I could not feel my leg at all and was scared of falling. I walked like an old woman a few steps then back again. When I got back, he was writing on a clipboard. He told me I could go home and he was prescribing me some vitamin B12 tablets and sending a neuro appointment. I looked at him and asked him if it could be a pinched nerve. The look on his face! He said he did not know and I would have to wait to see a specialist to answer that question. So, it was now 7.30pm and I was alone at the hospital and no taxi fare in fact, nothing at all on me. Paddy had left me there to go and fetch Kate from school.
I explained to the hospital that I had no way of getting home. They arranged a taxi for me, but told me I would have to pay for it. I had to ask them to get hold of Paddy to tell him I was on my way home and to come out and pay the taxi. Thank goodness it was local. I had to walk all the way to the taxi collection place. I could barely make it and luckily a nurse came with me. I really did think that I would be passing out before reaching my destination. So, that was my Monday. By Thursday, my right leg had gone numb as well and I really was starting to panic. So I went straight back to A & E. When I was explaining to the doctor abut being there on the Monday, he said that he could see that this idiot consultant had sent a referral to neurology and there was nothing further he could do! I cannot describe the feeling I felt. It was a mixture of disbelief, anger, frustration, and mostly if I’m honest, FEAR! He told me that if I was unduly worried (WHAAT), to contact my GP and ask her to hurry up my referral. So, back home I went and between Thursday and Saturday, we decided it couldn’t be that important otherwise surely SOMEONE would be doing something.
So fast forward to Saturday evening, and I could not go to the toilet. It felt like my bladder was full but try as I might I could not pass water. Then on my last try, I could not get up the stairs, Paddy called 999 and at exactly 11pm an ambulance arrived to take me to the very same A & E that I’d been to twice during the week. I was dreading it. However, when I got there (and by this stage I could only hobble), I was taken in straight away, no more playing around. I saw a doctor, who listened to what I was saying, what I had experienced, and he immediately called for a catheter to be put in, then he explained that he was admitting me onto a ward. I told him it was no good, they’d only send me home again and I couldn’t walk. He actually laughed and told me they would NOT be sending me home. They were keeping me overnight and then transferring me to another hospital in Manchester, Hope Hospital, now Salford Royal. At 8am Sunday 29th October, the ambulance arrived to take me to what was going to be my home for the next 6 months!
To be honest, I remember being helped into bed I could not seem to sit, everything was numb, I was transforming into something that was not ME anymore. I was a sack, crumbling – no pain though! They put in a drip, they put in a line so they could draw bloods or pump stuff into me. There were about three doctors all around me all the time. Two of the three were my two David’s haha. I remember the nurse, Ziggy, I was arguing so much with him, screaming at him, or was I, then I was on a train!!!!
I opened my eyes, everyone had gone, no more doctors, no more noise, just a swishing sound, soft, gentle. I was sitting on a train with a table in front of me and opposite, sat GOD! He was beautiful, but I do not know what He looked like, so cannot describe. All I know is I was so HAPPY. We were talking, He was holding my hands across the table. He spoke so softly. He leaned over like he was going to embrace me and then the light was so bright and the train was hurtling toward it, all of a sudden I was on the outside of the train and watching it going so fast, the light so bright, my eyes were hurting, they were tearing up and I started shouting for God. I closed my eyes and heard my name, I was so happy God was still there. NO, He wasn’t, it was a doctor, not any of the ones I’d seen before, this was a different one. He was holding my hand and calling my name, over and over again. When he saw that I was awake, he called a nurse over, poor Ziggy, did I really scream at him, or was I dreaming. I asked him and he said, “please don’t worry about anything”, so I presume I did!
Well, this doctor was a liver and kidney specialist. He explained I had gone into renal failure. I told him that I thought I had died. He told me that he thought I had died, or would die and that they had called Paddy to come to the hospital. I looked over and there was Paddy and “my David” – David Palen, who became my “personal” (to me, anyway) doctor. He and Paddy were chatting quietly and when Paddy came over to me, he was like a different Paddy to anything I had ever seen. He was white, he was almost tearful. He thought I would die. For some reason I found this hilarious. All I really wanted was God. I wanted to carry on talking with him. Funny though, I cannot remember WHAT we were actually talking about. It was then that I knew with all my heart, that whatever happened to me, I would never be alone. I had someone stronger than me, fighting in my corner.
David came over and sat on my bed, (oh, by the way, this was three days since I had been helped into bed), I had lost three days!!!! I often wonder if I was on that train for three days?? Anyway, David started to explain what was happening. He said that they needed to do another lumbar puncture. I did not want that, but had no choice. So, (I was crying my eyes out even before the needle got near me lol). I had to sit on the side of the bed, however, remember I could not sit, if I tried, I’d just crumple into a heap), so I had a nurse on either side, supporting me and David behind me doing his thing, me howling all the way through, and David asking me if the pain was bad, and me telling him I didn’t think so. It must have been really funny.
So, my friends, this is what the outcome was. I now had no use of any function from just below my chest. I was paralysed! I might never walk again, sit again, go to the toilet again. I had on a hospital gown that opened at the back and that was pulled to the side. I had a nappy on. I had to be changed every few hours, except that nothing happened. I had a few enemas which seemed to help a bit, but the worst was that I had no idea when I was needing to go. It was the smell that alerted me.
In the bed next to me was a woman called Linda, she was lovely. She and I talked for hours. She could walk with a stroller. She had MS. I don’t know what I would have done without her there to talk to. The worst was, I think, visiting hours as I had no one, I felt very alone and was so tearful. I cried all the time. The nurses were okay. There were one or two that were total bitches. After the first seven days (that’s including the three which had passed me by), the Physio’s arrived! Oh boy. So we started with stockings, then my bed had to be raised at the back little by little each day until I was raised up almost to sitting – with pillows on either side. Like we do with babies.
Then came the leg exercises, which were hilarious because I didn’t know what my legs were doing. So they would tell me to push and I would try and nothing happened. Doctors came round twice a day, stuck pins in me, I felt nothing. I remember one afternoon, two work friends and one of the Direcors of the company came to visit, I was so embarrassed because I did not know if my bowels would work and also my legs used to twitch really badly, they would have a party under the sheet hahaha. Anyway, so Jane, Carol and Peter came to visit me and Peter wanted to know all the ins and outs and I was hoping that my bowels would behave – nice to have visitors and it cheered me up so much.
The days seemed to fly by, even though I just lay there, on my back. I could not turn myself so that I could lie on my side. It was about two weeks into my hospital stay that the pain started. It was as if I had a huge swelling on the right side of my upper back. Between my shoulder blades, but slightly to the left. It became almost unbearable. Throbbing, aching, and I couldn’t move. Some of the nurses used to take pity on me and take time to come over and stuff pillows behind me so that the pressure was taken off a bit. I seemed to spend 20 hours out of 24 crying. Linda in the bed next to me was brilliant. She really looked out for me. Then the burning started, just under my breast, prickling and burning and sore.
Once the physio’s and Occupational Therapists started their work, I felt a little bit happier. At least I was doing something to try to help myself. I can tell you this for nothing, those work-outs were an absolute scream. They would encourage me to try to sit on the side of a large plinth with a big ball on my lap for me to hold onto for support. I’d have two pillows on either side of me and the physio in front of me. Also two pillows behind me. It took them a while to convince me that they would not allow me to fall and do more damage. The only problem was, everytime I attempted to move, MY BOWELS WOULD OPEN! Oh dear, I am giggling now as I remember those days. Me, feeling embarrassed, them pretending nothing untoward had happened. They were, in all honesty, fantastic. I will never forget Clodagh (Physio) and her helpers. She was Irish and we didn’t hit it off right away, but eventually I accepted that she was there to help me and I could either take her help or not. Thank goodness, I decided it might be worth it. Well, it certainly was.
So, after about 2 months, I was taught to banana board. This is a board, shaped like a banana and you put it underthe mattress of the bed and on a chair (arms fold down), you then manouvre across the board (in my case, holding on for dear life to the helpers), until you are safely in the chair. At this stage of my journey, I was allowed 10 MINUTES at a time, to sit on the edge of my bed, with the table in front of me to lean on and hold onto (still could not sit unsupported. Oh goodness, I would ask to be sat up, then they would just forget about me. The one day I sat there for 2 HOURS. I kept asking them to put me back and everyone kept telling me to “just be patient”. More tears, until thankfully, Linda took things into her own hands. She got hold of one of the nurses and told her in no uncertain terms that if they did not do what I was asking, she was going to report them all. Within minutes I was lying on my back again, safe and sound and in a lot of pain. More tears, lots of thankfulness to my friend next to me. I spent 3 months on that ward. My physio was coming on ok, I was now going down to “the gym” where they had paralell bars and the likes. Oh, must just tell you all this. One of my physio days, I was taken to the physio room, I was put in this contraption. OMW, I cannot describe the panic and racing of my heart. It was a narrow board type thing, I had to lie on it. They then strapped me up – strap around the ankles, strap around the shins, strap around knees, then thighs, hips, waist and chest. They explained, that this table tilts. That was enough to panic me. Anyway, they tilted it slightly – not too bad, but when they tilted it a bit more, the panic and terror kicked in. You must remember I had been bed ridden for 3 months, I could not feel anything from below the breast area, so I was panicking. Anyway, they carried on until I was almost at standing level. Oh forgot to mention, they had these metal things that your feet rested on as well. But, when you cannot feel your feet, it’s hardly worth mentioning really. I heard Clodagh’s voice from far away, and realised if I didn’t get a grip, I’d be passing out hahaha. I really did try and I had gone totally white evidently, so they were opening the windows, putting the fan on me and lowered me back to lying position. Phew, I had done it, albeit that it was stressful. I am convinced that OT’s and Physio’s have a good laugh when they take you back to your bed. The next time it was much better, I knew that nothing would happen to me I was strapped in really well.
They weren’t finished with me though, a week later and we repeated it, but this time, they took off the top strap. More panic. A week later, the next and so on until all I had holding me upright was the knees, shins and ankle straps. Well done me!!!!
During this time, with all that was going on, the hard work by both me and the physio’s, the neurologist would come round twice a day. Because of the long-term use of a catheter, I was prone to Urinary Tract Infections (UTI’s). I’d no sooner finish a course of antibiotics, when I’d have another one. One morning, my David came in as usual, this time with the most beautiful woman I’ve ever seen. He introduced me to Meneka (spelling?). She was a doctor, she was so friendly and spoke to me like I was all that mattered. Probably what I needed right then. She came every morning. Then they dropped a bombshell, I was to have yet another Lumbar Puncture (third one). David said this would be the last (he promised). Meneka could see how upset I was and she told me that she would do it herself. I guess that made it a little better. So in came the trolley with the dreaded “needle” As usual I sat supported on the edge of the bed leaning as far forward as I could, Meneka spoke to me the whole time. I was in floods of tears. I cannot truthfully say that this was all pain. I don’t even know why I was blubbering. When it was over, Menema told me to lie flat on my back and she’d organise some strong coffee for me. Evidently caffeine helps with the headache which normally goes hand in hand after a LP procedure. She brought me the coffee herself and I was still crying haha. She sat down on the bed and cradled my head, stroking my hair and telling me it was okay and I’d be fine. I couldn’t believe the kindness she showed.
All those days lying on my back, I had so much time to think. This was not a good thing all the time. I was missing Paddy and Kate terribly. I only saw them on a Saturday as it took them over two hours to get to Hope and then two hours back and at this time, Paddy, who was my moms carer, had moved my mom to our house so that he could cope better with seeing to Kate, who was only 8 at the time. He would get her ready for school, take her, come back home and sort out my mom. Kate was fantastic. She helped him all the time. She helped my mom to shower and wash her hair, sat with her. My mom had at this stage developed the onset of dementia. It was not unusual for her to go walking around the neighbourhood, and luckily, she was known to the taxi drivers, so it was often one of them that would bring her home with “does this belong to you”. Poor Paddy! Not only was I missing them, but my older daughter who was 22, was still living in South Africa. I wanted her with me. I was longing for her. I asked Paddy for photo’s. I needed to see her, even if it was only a photo.
Right, so now I could sit without the pillows, as long as it was in a chair that had arm rests. I was still totally numb and could not feel anything. I had progressed really well in those three months, I now had a zimmerframe (yes, in my 40’s and a zimmerframe). I could only walk about 5 steps with it. Oh, and I managed a few steps on the parallel bars in the “gym”. I was doing really well. So well, that I was being transferred from the Acute Neuro Ward to the Acute Neuro REHAB ward upstairs.
Unfortunately, they came for me late that night and I had already been settled in my bed, so was a bit panicky about being moved upstairs. (I must just say at this stage, if I repeat myself, I am sorry.) I was put in a wheelchair and all my belongings and taken upstairs to the ANR ward. Oh and since my little episode with being left sitting out for two hours, I lay in bed day and day and spoke to God. I questioned what he and I were talking about on the train, I asked him to stay with me, please, please, stay with me. Please don’t let me feel the need to give up. When others on the ward were going down to the cafe with their families or being pushed into the garden for a cigarette, I was still lying on my back, and I wondered time and time again if I would ever go home – how could I go home? How would I manage? How would I go to the toilet. Having a wee wasn’t a problem, because of course, I had the dreaded catheter, but the other???? How would I get INTO the house? How would I wash, WHO would wash me? How would Paddy and Kate cope with me like this? So many questions, and absolutely NO answers. This is when I felt the closest to God. He never did answer me about what we were talking about on that train though, but he answered all my other questions. He never left my side. He was my strength. This whole experience had taken away everything from me, not just physical, but also my ability to deal with things like not speaking up for myself. That all changed. I questioned everything I wasn’t happy about. I would not accept a “brush off”. I actually amazed myself really. I could eventually stand up for myself again.
I arrived on the ward and they were waiting for me. A nurse-aid called Linda was trying to be helpful, but totally messed it up, she reduced me to tears which I could do nothing about because I was exhausted after the move, but the next day when she came back on duty, I let her have it – never raised my voice, but I did ask her what it was that I had wrong with me. She gave the correct answer in that she knew the NAME of the condition, but when questioned about WHAT it was, she didn’t know. So, I very calmly pointed out to her that she was LEARNING from ME. She should make notes hahha. I was not trying to belittle her or make her feel terrible, but I was trying to tell her that it would not help her or me if she started to boss me around without knowing what the hell she was doing. Ok, so that was sorted. Then Lo and behold, I looked over, didn’t realise it the night before, but my opposite neighbour was Julie, from the previous ward. The one that got so confused. She waved to me and thanked me so much for coming to visit her. No problem at all was my reply and I really meant it. Julie was lovely, so gentle and sweet. She was moved to a normal rehab centre closer to her home about a week later.
Not sure (again) if I mentioned this, but Linda my previous next door neighbour in ANU was discharged just before I made my way upstairs. She came to visit me a while later. It was great. I had a whole new set of doctors and physio’s now. The doctors were nowhere near as friendly as the first lot. They were never the same. About three weeks later, my David came to visit and asked me if he could do a case study on me. It involved going to the auditorium where he would tell some doctors, professors, neurologists, about my condition (TM) and they may ask me a few questions. I said yes.
That was interesting. A week later I was taken down to the auditorium, asking God to please keep my bowels in check until I got back to the ward. David met me at the door and wheeled me in. Wow, about 50 men and women were sitting there, none of them had smiles. My David had all my notes, all my mri results and so began his lecture. I sat there listening to everything about my medical history so far. After that (which lasted about an hour), some of the doctors did in fact ask me some questions, all of which, thankfully, I could answer. They then literally lined up, took from their pockets a set of needle type instruments. They came, bent over, stuck them into me, asked me more questions and at one time, one of the doctors, while asking me questions, happened to be standing on my foot. I could not feel it, but my leg started to jerk so much that he felt it and realised that he was standing on my foot. Haha I was hysterical. It’s a wonder they didn’t take me back to the ward in a straight jacket.
Between all that I write, there is so much more, but I couldn’t possibly get everything in here, otherwise it would be like a book.
In Julies place was a new lady called Sue. Sue was so gentle and sweet. She could not use her hands. We soon began talking and it was great because we both were awake at all hours and used to chat quietly and watch tv etc. I also became her hands. When she needed a nurse, I would buzz for them for her. So, one night we were watching tv, it was after “lights out”, so must have been around 11pm. I must have fallen asleep and I was woken up by Sue calling my name, so softly I could just about hear. Anyway, looked over and saw an outline of a MAN standing next to her bed. Then I heard Sue, say “Colleen, please would you ring the buzzer”. Which I did. Well, the nurses came in and went over to Sue’s bed and said to him that he couldn’t come onto the Womens Ward. The really funny thing was that when they brought him past my bed, I realised Ernest (he was a patient, will talk about him later), had not a stitch of clothes on. Oh my, after Sue had recovered from her shock, we were giggling hysterically that the nurses had to come and ask us to keep it quiet. Poor Sue, she said he was insisting that she was in HIS bed.
Ernest told me in that December when they (hospital) put on a wonderful buffet and a cabaret show for us. It was awesome. Ernest told me that he was a Managing Director of a large company, one day he had dropped something and bent down to pick it up, when he sneezed. That was all he remembered and woke up in the hospital. He had bleeding on the brain. He looked “normal”, he acted normal most times, but every now and again, he would do things like he did when he thought that Sue was in his bed. Walk naked down the corridor, or come into the corridor calling for his wife.
Right need to go and wait for my Kirsty and Roy. They are driving down for a visit. I get so happy and excited when I see them. The time goes too quickly though.
Will carry on later. Much love to all of you that are taking the time to read this.
So, before I carry on with my “beginning” journey, just wanted to tell you a bit about my weekend. My Kirsty and her hubby, Roy arrived late Friday. So, it was a late night, then up at around 8.30 and Kirsty took me for breakfast. From there, it was straight to an appointment in town which involved a fair bit of walking. Got back home at around 2 and then people started arriving for a braai (bbq) and the last people lelft at around 12.30am. I was awake – no sleep in between. I enjoyed my day so much. However, Sunday, I was man down – totally – to the point where I think my family were getting a bit worried. I would wake up and an hour later, back to bed and so on until about 7pm when I woke up, had a shower and still felt tired. I was sore, miserable and irritable, to boot. It is now Monday morning and I am starting to feel a little bit better. But, that is what happens to us. To enjoy a day, we often have to pay quite a price.
Anyway, digression over.
While still on Acute Neuro Rehab Ward, Christmas was fast approaching and the staff were trying to get as many patients as possible home for a couple of days, or at least for Christmas Day. Unfortunately Sue and I were not able to make that trip. I just couldn’t stand long enough to even make them consider me for this, let alone what would happen when the toilet was needed. My catheter was a concern (to me), as it was uncomfortable, and I hated it. A few days before, the consultant had asked the nurses to remove it to see if my bladder would work. They took it out at around 11am and by 2pm I was bursting to go and was now sitting on a commode on the ward, but nothing was happening. The consultant did her second round at around 2.30 and was furious when she saw that I was still trying to pass water, and ordered the catheter to be put back. She did tell me that this might never work!! Anyway, I was re-catheterised and left to mull over the fact that I would just have to get used to this. I was later told that it would not be an option to remain catheterised indefinitely. We would have to talk about this at a later date.
At this stage, I was told that as soon as they could get me into a rehab centre closer to home, they would do so as there was not much more that they could do for me. At this stage my story was this. I could now stand for approximately 40 seconds, I could take a couple of steps with my zimmerframe. I could sit in a chair with arm rests for an hour at a time. I could be wheeled out in a wheelchair with my catheter bag strapped to my leg. I know that I mention the word “catheter” so much, but this was such a “thing” with me. I was having physio now about 3 or 4 times a week. Even though it seemed as though nothing was moving very fast, the physiotherapists were very happy with my progress.
I was longing for a bed to become available closer to home. It was killing me not seeing my family more. Once a week was not enough. I missed them so much. I missed Kate so much, I missed Kirsty who was so far away. I needed more.
So Christmas Day arrived and Sue and I had asked if we could attend a church service in the morning. So at 7.30 a nurse arrived to take us, each in our wheelchairs, to the chapel. This just happened to be right on the other side of the hospital. Hope Hospital is a huuuuuge hospital, so it took us (no lie) about 20 minutes to get there. The service was lovely. I felt rejuvenated. Even though it was a Christmas service, I found my special message.
After the service we were taken back to the ward and my mom and Paddy and Kate were waiting for me. I was over the moon as I was not expecting them as there were no buses running on Christmas Day. A person who we didn’t even know very well had offered to drive them all the way to Salford to visit me. I got lots of presents – and… running up to Christmas, my one upset was that Kate would not have any presents as we had no money. Well, Carol at work had popped round to tell Paddy during that week that one of the women at work had put Kate’s name forward to receive some gifts. Oh my, she was given a couple of bin bags of presents. Some from that which I’d just mentioned, and some from the people at work. Paddy was also given a gift voucher for £250 for the family, which came from the Directors and Staff of my company. It was very, very touching. When they had left, we were given a roast dinner. There were so few of us on the ward as the others had all gone home for a few days.
You know, I cannot remember everything I have written about above, so really do apologise (again), if anything is repetative. It is at night, after I’ve gotten (is there such a word?) into bed, that I do all my thinking, worrying, talking to myself, talking to God. I sometimes go to sleep with all these things going round and round in my head and thankfully in the morning, the answers are there. Not all the time, but most times.
So, New Years Eve was upon us. It was only Sue and myself on our ward, which consisted on 6 beds. I had been told earlier that day that they now had a bed for me at the Birch Hill Neurological Rehabilitation Hospital. Oh gee, I was over the moon. This was about a 20 minute walk away from our house!!!! I could see Paddy and Kate more than just once a week.
The nurses (night shift), had a party, there were nurses from all over the world. They each made a platter of food, and because Sue and I were so good haha, at around 11.45 that night, we were both brought a plate of food, all sorts, little pies, sandwiches, salads. It was great. The nurses would be in and out, chatting because the wards were almost empty. It was truly a great time. That was a good memory.
There was a male nurse, Gary, who used to come on duty and then at some point, he’d come and massage my feet for me. They felt like dead tree strumps. My feet ached continually and twitched all the time. They used to flop to the side and I couldn’t even press them on the edge of my bed. I was still sleeping with my side bars up, even though I could not turn myself – these railings on the side did come in very useful around mid January, when I started getting stronger, I used to grip the rait with my right hand and then slowly pull myself as far as I could. After a while, I managed to get myself lying on my right side. Then eventually I could do it on the left side as well. It was things like this, that I got so excited about and wanted to shout it out to the world. It certainly relieved some of the pressure and pain from my back. I really was making progress and so very proud of myself.
Well, it was around 20th January 2007, when I was told that I would be going to my new home the following day. That evening, I had my last physio session. I caught the big ball that was thrown at me while resting my legs agains the plinth. I stretched for that ball, I walk all the way across the room on my zimmerframe. I cannot explain to you the elation that I felt.
The following morning around 10, the ambulance arrived to take me to Birch Hill. I had such mixed feelings. Part of me wanted to shout out of happiness at being so close to home. Another part of me wanted to cry out that I wanted to stay at Hope – it had been my home since October 2006. I didn’t know if I wanted to leave, I didn’t know what was going to happen to me yet.
I arrived at BH and they were waiting for me. I was taken to my room. It was such a huuuuuge surprise. I was expecting a ward, but I got my own room. It had a really comfortable bed, a handbasin, cupboard, mirror and a chair. It faced outwards on to lawn and what was later to be my daughters High school. Before I got too excited, the panic set in. A doctor arrived, knocked at my door and popped in. He told me he was a neurologist, that was there most of the time and he was there to go over my notes and to do a routine examination and that a nurse would be in later to do bloods, and swabs etc. That went relatively well. I asked him about getting any feeling back and he said that no one would know. Their job now was to get me to where I need to be, so that I left there, armed with the best that they could do for me and I could do for myself.
A while after he left, a nurse came in – very friendly. She explained how BH worked. She said that the main thing there was physio and “doing” and fending for yourself. Whhhhhaaat? How? I couldn’t even walk properly. So, she did her thing and told me a physio would be round and when they were finished to ask them to bring me to the dining area.
Michaela arrived. She was the physio. She was about 6ft tall, slim, pretty and around 35 I would say. She told me that she was going to be working with me, along with her team, to see how far I could go and that the OT would come by and also have a chat. By this time, I was totally shattered. I asked her to take me to the dining area, but she said to have a rest and she’d get someone to come and get me just before supper time.
At around 4, a nurse came in with a WHEELCHAIR! My first wheelchair – and wait for it – it was a MOTORISED one! Hahahaha. I was panicking again. Anyway, she walked alongside me down the wide corridors and we entered this huge area. One part had a few tables and chairs, mainly in sets of fours then a kitchen, where only the patients were to use it and an open plan kitchen for the staff to serve up our meals. Another section was made for a large screen tv with reclining chairs (about 10) and some normal ones, and then a large area with tables and chairs for just sitting around on.
I was introduced to a few of the patients that were seated around. All friendly – all either wheelchair bound or on crutches, some with brain injuries, some with MS (which by the way is very similar in symptoms to MS and which in fact, a LOT of NMO people have been diagnosed with prior to NMO). Some patients were recovering from really bad strokes, oh goodness, there were all sorts. However none with what I have.
Well, my friends, that is all for now. I am just too tired to carry on. Will chat later and as always, thank you so, so much for reading this far. It really does mean so very much to me.x
It was so different at Birch Hill. Or, it was for me. In hospital, everything was done for you. Here, they encouraged you to do things yourself. I was woken up at around 7am the following morning by one of the physio team. There were exercises to do! They were bed exercises, to strengthen the legs and tum and bum. She helped me through them and then she wheeled me into the shower room, which was a wet room with grip handles all around. She stayed with me to see how I would do – which was very good, thank you!
I managed to even stand for a second to rinse myself and I must say I was over the moon. She then wheeled me back to my room to dress myself. She told me that breakfast was between 8 and 9.30 and I should get myself dressed and then to the dining room. I was very nervous to be left on my own to do all this but do it, I did! It was quite liberating really. It was such an achievement for me. Using my zimmerframe, I managed to dress myself and then get into my wheelchair and very slowly manouvre to the dining room.
There were only a few people there as it was just after 8. I was served breakfast and told that as soon as the OT had assessed me, I could start using the kitchen, but until then, it was a no go.
After brekfast, I met a young man who was a “games co-ordinator”. Basically he was there to help and also to play card games and monopoly or other board games. I was sitting getting to know everyone, when Michaela arrived to take me to the physio room. This was a very large area and could accommodate up to three patients at a time. It was made up of plinths, mats and walking areas. The first thing that Michaela did was ask me what I had done in hospital and how I felt it had been going. I explained to her that my main area of concern was my catheter, which I wanted OUT but that Dr Walton who was the resident Neuro rehab doctor, both at Hope Hospital and at Birch Hill had explained that this may never happen. The second thing was that I wanted to go back to work. She was really surprised at that. The work part! But, she said that she wanted to encourage me to have a goal. Well, that was mine. I NEEDED to work, so that I could earn enough money to get my beautiful daughter, Kirsty over here. I was missing her just too much.
I also explained to Michaela that for the first month or so that I spent in hospital, I had very little pain, except for the area in my back. Now, though, the pain was incredibly bad. Not only the area between my shoulder blades, but a constant burning throughout my body. She explained that this was from the nerve damage and told me to talk to Dr Walton about it.
Dr Walton saw me each Wednesday, although there were doctors available day or night as well. So, that first physio was good. We went throught my bed exercises, she explained what each one was for. I was very weak and could not stand for more than a minute. I could still only walk about 5 or 6 steps at a time with my stroller. Michaela then dropped a bombshell!
As from the following day, my zimmer was leaving! In it’s place I was getting crutches – the ones that go round your arms and that was enough to put me in a total spin. I asked her to please let me keep the zimmerframe and she shook her head. Not an option!
So, next morning, I reported to physio at 10am and sure enough, there were my crutches. I sat on the edge of the plinth with the crutches in place and froze. I could not even stand. Michaela took them from me and told me to stand with my legs leaning agains the plinth. Once standing, she positioned the crutches round my arms and told me to lean on them. She taught me in that hour how to stand, disengage myself from the crutches and put them in one hand whilst putting the other hand behind me to lean against the plinth, then sit. It sounds silly, doesn’t it? Not silly to me though!
A week later I was transferring from wheelchair, to plinth, to crutches and standing for FIVE minutes at a time. It was time to start WALKING with my new aides. It was amazing. I walked almost the length of a corridor – albeit with someone pushing a wheelchair behind me and Michaela on the side of me. I was absolutely euphoric! I was over the moon. I was WALKING – OMW – I cannot tell you how I felt.
That week, I met Jo, the Occupational Therapist (OT). She was an absolute doll! Jo asked me how I felt about a HOME VISIT – whaaaat? Oh my I was ecstatic. She said that Michaela would see how I did with the stairs and the toilet and then would decide. So the next morning we started on the stairs. I tell you, I worked so very hard. When I wasn’t in physio, I was on the parrallel bars, practicing my walking. I was now able to go to the toilet without having someone with me. Except at night. Michaela took me to a set of stairs that had six up and six down, with railings on both sides. It took me all of two days to master that one. The determination was there. I think also, I was now getting phone calls from Kirsty at the hospital – it was so good to hear that child’s voice. And… Kate and Paddy could visit EVERY day. Also Kate could come and spent days with me.
The following week Jo came and said she was taking me on a home visit. I was so excited. Had not been home for 6 months. I did not know how to get into her car. So, Jo showed me. Everything that I had once taken for granted, I had to learn to do. All differently, but I did it. It took me a few tries, and then I did it. We were on our way HOME. My heart was in my mouth (I often used to wonder where on earth that saying came from), well I certainly knew now.
When we got to the house. I looked at the three steps and thought “I can’t do this”, but Jo was there and she helped me out of the car and I WALKED TO the gate, I got up the stairs with her help and into the door – HA! I had done it. I needed to sit, my legs were shaking that badly. So, I rested, then I had to get up the stairs. Jo explained that she was there to see what was needed in the home to help get me back there, first for weekends, then for good.
So, one step at a time, I climbed. Jo, behind me. I got to the top and wanted to drop, got to the bathroom and she said to sit on the toilet. That was an ordeal as the toilet was lower than the hospital. She made a note to get a seat that raised it. We had a shower chair with us and once in place, it fit over the bath, she showed me how to get on and off. The one problem I had was getting my legs over the bath. My one leg was very much weaker than the other. I mastered it in the end.
Then into the bedroom. The bed was lower than the hospital bed, so it was going to be a struggle for a while until I got used to it. But, in the end, I did it ok. Then back downstairs we went. We sat and Jo said before I could come home for a weekend, she would need to get a second railing put on the stairs. And the other things, like stair grips for outside and the toilet seat. Also she said I would need some “perching” stools.
Then we went back to Birch Hill. Two days later I was having my “kitchen” test. This was not just how I got on in the kitchen, oh no, this entailed going to a shopping mall with Jo, buying the ingredients to make dinner (mine) and then going back and making it. I opted for making burgers and I did really well. This was my third week at Birch Hill. I could stay in my wheelchair in the kitchen – everything was adaped for wheelchairs.
My days at Birch Hill was spent doing physio, going for short walks outside on my crutches, chatting to others, watching a bit of tv, waiting for Kate and Paddy to visit and generally thinking about and dreaming about getting home. Also, getting rid of my catheter.
Well, I have decided to write this chapter while in absolute hell. The pain is so bad that I want to never forget how I used to feel. Not for sympathy, but rather for myself, so that I never forget how I used to wake up EVERY single morning – just like this. Except I probably could have prevented a bit of this pain if I had not been so stupid. I woke up at around 4am this morning, which in itself is not too unusual, then went back to bed at around 6.30am. Now, IF I had taken my morning medication a bit earlier, I would probably not be in this damning pain. So, I woke up at 9.30 in HELL! There is nothing that is not burning, aching and just painful. Unfortunately, Paddy does not know this. So, he is chattering on about what has happened on the news. I cannot care less. And that’s the truth. I want to be left alone. I do not want to know about anything. At the moment, I am concentrating on just being! I know it will pass.
So now an hour has passed and the pain is slowly subsiding. Just a dull ache at my back and the tightness around my chest and ribs that is neuropathic. The more pain there is, the tighter that “band” gets. Everyone with NMO or TM will know what I’m talking about, but for those that don’t, this is a band like someone has you in a vice-like grip and it squeezes you normally happening around the chest/hips, rib area. I have had it around my ankles and bottom as well. I have also noticed that it happens when I’ve eaten sometimes.
So, back to my time at Birch Hill. I noticed a lot of things happening at this time. Things like when my pain was worse, how long the pain normally lasted. I also noticed that my physio was getting really good. I could walk the whole corridor with my crutches and not feel nervous. To explain, my legs were still numb, they felt like tree stumps. I needed to look at my feet a lot to make sure they were doing what I wanted them to. I relied on my crutches. My legs and in all honesty, most of my body, felt like it was not mine at all. My back felt like I had a huge swelling on the one side. Of course, I did not really, it just felt like it. It was very sore and throbbed constantly. My bottom felt like It had a tree stump growing out of it. It felt like I could perch on it hahaha. My feet ached all the time. I used to pay Kate to massage my feet, but no matter how hard she massaged, I could get no relief. I often got scared that I would tell her to do it harder and maybe break a bone in my foot! Anyway, it helped a little bit. That was the main thing. Pain became a way of life really. Even though I was on Gabapentin at the time and it definitely helped with the nerve pain, I know this because if I did not take my dose at the right time, I defnitely felt it. However, this medicine did nothing for the imaginery swelling at my back. This was made less by paracetamol, but nothing would take away the actual pain. They tried giving me all sorts of medication, but nothing worked, so what was the point in taking it?
I will have to stop now as it is nigh impossible to carry on like this with Paddy talking and now Kate has come down, so will carry on later.
Physio became impossible with the pain I was getting when weight-bearing on my right ankle. I was sent off to the neurologist on call and she said it was probably just the strain from all the physio, but to be sure, she was sending me for a scan. My ankles were so swollen she said it could be that there was a blood clot. So, myself and one of the nurses were taken by ambulance to Rochdale Infirmary where they did the scan and sure enough, blood clots. I was sent back to BH and started on Warfarin. I was due to go on my first home visit weekend the following day, so had a crash course in administering the injection – that was fun! Quite simple really. Pinch your stomach around the navel area and inject. Nothing to it.
On Friday morning an ambulance picked me up and delivered me home. Armed with catheter bag and all. I was so excited to get back to “normality”. It was wonderful to spend time with Kate, Paddy and my mom. Albeit that she was a little confused as to what I was doing at home. I feel so sorry for her and wish with all my heart that I could have some time with her again, just to tell her how much I miss her – but of course, that is not going to happen.
While I was in hospital, Kate and Paddy had acquired a guinnea pig. The moment I held Toffee, I fell in love. Who would have thought that a guinnea pig could provide such love and afection, and comfort. She would snuggle in my neck, chattering all the time.
Kate was somewhat appalled that she was to share a bed with me – she didn’t mind me in it, she just was not overly keen on the catheter. Poor child. We did get through it. All went well. The weekend went way too quickly. I managed the stairs – would not have done, had they not put in the second railing so promptly. I cannot lie though, showering was a tricky thing. I was so nervous, it took me a long time to shower as I was worried that I would fall off the shower chair. It is totally different when you come home and there is no one looking out for you. I guess I felt like I had to start as a newborn. Then learn to walk, learn to sit, stand and finally bathe and shower myself.
After that first weekend, I saw the neurologist and asked her to remove my catheter. Apart from the infections which seemed to never cease, I hated the thing. Six months later they removed it. She told me that if it didn’t work, they would not put it back, instead I would need to self catheterise. Whcih to me didn’t make sense, because I was still very numb and how would I know? Well, that question was answered soon after. She told me to drink lots and hold it as long as possible before going to the toilet. A good few hours later, I felt I needed to go. I was so nervous and was almost in tears as I made my way slowly to the toilet. IT WORKED! I went to the toilet ALL ON MY OWN. I was overjoyed. It was like I had climbed Mt. Everest!
I spent four weeks at Birch Hill – The last two, I was able to self medicate. This was to get me ready for going home. They felt that I had now come as far as I would – and they were right. It was just confidence now. So, four weeks later, all my measley belongings were packed in two large hospital bags and the ambulance came for me and off I went. Out into the big, wide world, to try to get back into “life on the outside”.
I had someone come from the Rehab team each day for about two weeks. In that time, we did exercises on a big ball, went walking around the village, me walking, them pushing my wheelchair behind me. They took me on a bus ride which really made me very sore. I think it was the vibration of the bus, I am not sure. We even went for lunch one day.
During that time, my aim was still to try to get back to work. Both Paddy and the rehab people said that they thought I was being too optimistic. But, wasn’t that what my ultimate goal was. I could walk with my crutches, not far, but I could, I could go to the bathroom independently, I could sit and my brain was still working – sort of! So, why not? I went to see my gp to ask her to sign my sick note. And, eight months after going off sick, I started back at work.
The rehab team had organised a Ring and Ride service for me. Pick me up at 9am and fetch me from work at 12. That lasted for the first month of being back at work. It was horrendous. They would pick me up at 12 and then go on journeys to pick others up and sometimes I’d only get home at 2pm. I was sore and I was exhausted. My line manager, who lived in Littleborough, said she would pick me up in the morning and if she went straight home, would drop me off at home afterwards. It was fantastic. Carol would pick me up at 8.30 after that first month, and either she’d take me home, or I’d get a taxi.
The most exciting part was that my precious Kirsty had come over and was now living with us. She met me one evening after work and together we took a bus home. Again, the pain was excruciating and so that put paid to catching buses. When I talk about pain, I wish you could understand the extent. I would not wish it on anyone.
I was still taking Warfarin for the blood clot and continued this for 6 months. I needed to have my bloods checked weekly and also needed to see my neurologist (Rehab) every 3 months. The only complaint that I had at that time was that my legs were still numb and the pain in my back was awful, even with the medication. It was still bad, but without it, the pain was unbearable.
I soon fell into a routine. I would make myself get out of bed at 7, first thing I’d do was take my meds. Then off to shower and get ready for work. Go to work and come home totally exhausted. Eat, sit for an hour, and go to bed. In this time, Kirsty was unable to find proper work, so went back to South Africa. It broke my heart to say goodbye to her. She promised that she was going to apply for her Ancestral Visa and come back. I prayed that she would keep that promise.
Kate in the meantime carried on, making us so proud by getting a really “big deal” award when she was in Year 5. It was the Childer award and she met the Mayor and there was a big ceremony at the Town Hall. She coped really well. I later learned that it was a terrifying time for her. She worried herself sick about what was going to happen to me. She missed me.
Months passed, things went smoothly, apart from pain, and a bit of anxiety. I would often tell my gp that I worried so much about it happening all over again. I will never forget her answer to my worries. “Colleen, you have as much chance of it happening to you again as I have of getting Transverse Myelitis”. That seemed to put my mind at rest. And so, on life went. Me, working, Paddy cleaning, cooking and making sure Kate did her homework etc. My mom had her lucid moments, but they were getting few and far between. It was a constant battle. She’d accuse us of things, accuse Kate of things and cause an uproar. If I could only handle things differently! I used to get upset with her, instead of ignoring her or talking gently. Ohhh, if only.
Anyway, during this time, she was in and out of hospital for her cancer. Paddy received a phone call from a McMillan nurse one day asking if we’d like some help with my mom. This was really welcome. They arranged for her to go to a hospice once a week. She caused chaos there, but we used to have such a laugh. She’d accuse other patients of stealing her socks, her handbag (which she didn’t even have), oh dear, everyone knew my mom. And, everyone loved my mom.
Sadly the time came, when we agreed with Social Service that she needed to go into a Carehome. It was absolutely awful. We battled to see her some days as it was a good 15-20 minute drive and not having transport, it was taxi fare all the time. About three months after her being taken to the carehome, she passed away. I know that she was unhappy there, I also know that it was not possible for Paddy and myself to give her the care she needed. I sometimes wonder, though, if she did in fact, get the care she deserved. However, her faith was so strong. She was, I think, happy to go and meet her Maker.
During this time, I never saw anyone other than my gp or the rehab neurologist. There seemed no point. I knew what I had, I knew the nerves in my spin were damaged and have regenerated as much as they would and that I’d be permanently disabled. I accepted that. Life went on. It made me sad when I thought of all the times that Kate and I would walk around, go into town. Those days were gone. I could barely walk to the corner. I hated my wheelchair. I hardly ever used it, unless there was no other option.
People would look at me and automatically think I’d hurt my foot. I thought about it and realised, I’d probably do the same and DO do it. My whole way of thinking changed. I became far more approachable (if that’s the right word), I understood people more. I had more compassion that I’d ever had before. I still prayed every day. It wasn’t really praying, it was more like talking to God. I thanked Him daily. It could have been much worse. There are some that never recover anything. They are bed ridden. I have a lot to be thankful for. At this stage, Kirsty was indeed back in the UK, armed with her Ancestral Visa. She stayed with us for a few months, but then a really good friend of hers from way back came up to visit from Essex and took her back with him, organised a job for her and that was that.
And so the months turned into years. The pain in my back fluctuated from sore to excruciating. The worst was if I was at work. I’d pray for the day to end so that I could deal with it alone. Work was really good. They looked after me and nothing was too much. I had as much time off as I needed. I loved working. I loved the people I worked with. I loved talking to everyone, especially the young ones. They were great and kept me grounded. I needed to work. I had gone back in May of 2007 and sadly in September 2010, I started to feel really bad. Much worse, painwise, it was terrible. I started to have constant headaches. They never left. Paracetamol didn’t work. I went to the doctor, she prescribed a stronger painkiller. A week later I went back, she prescribed an even stronger painkiller. Then about two weeks later (this went on for almost a month), I went back and told her I couldn’t live like this – the headaches were just too bad!!! She then decided to send me for a scan of my head. In the meantime, I went back to work and told them I would have to take sick leave until my headaches were sorted. I couldn’t concentrate on anything except my throbbing, aching head.
On the Sunday I stayed in bed most of the day, my head was pounding and I felt sick. I remember getting up lunch time and was so dizzy that Paddy called the emergency doctor. He arrived, took my blood pressure, asked what my doctor had prescribed, I told him, he said “stay on them” – he gave me some antibiotics in case I had an infection somewhere!!!!! Then he left. Told me to go back to my gp if it didn’t settle in a couple of days. I got up around supper time and ate something I think. I then went back to bed.
Next thing I knew I was in a hospital bed. I had no idea how I’d got there. I do remember thinking I was in an institution and they were hurting me. I was kicking, screaming, biting. All in my dream. Well evidently it was no dream!!!! I remember opening my eyes – there was a doctor. He asked me who the Prime Minister was. I got it right on the second attempt. He said I’d been unresponsive for 3 days. It was now the Wednesday. He said they were moving me to a recovery ward. They got a wheelchair and wheeled me to a ward. I was in hospital gowns – I don’t remember any of this. The doctor told me that I had tried to bite him and fought with them when they put a drip in haha I am so glad I cannot remember this.
I was so surprised in walked Kate, Paddy, Kirsty and my brother, stuart. My mouth literally dropped open. I couldn’t believe it. They filled me in. Kirsty had caught a train up to us on the Tuesday morning, they had come to visit me then, but I had not recognised any of them. They were so upset and poor Kate had to be wheeled out in a wheelchair. She almost passed out. She said it was seeing me staring at them without knowing who they were and the drip and everything. Paddy said that the one doctor has asked his permission to do a lumbar puncture and he had given it and another doctor had come in and said it had to come from me, but I kept fighting them off. All this while I had no clue. In the end the lumbar puncture was never done and they said that I had swelling on my brain.
they put it down to an encephalactic episode. The doctor came to see me when my family had left, he told ME that I was “very lucky” Whaaat? how was I lucky? he said I could have died. Was that my fault? Anyway, he said that I could go home on Friday and that they would send me an appointment to see a neurologist.
I was duly discharged. I sat in the ambulance waiting room from 2pm until 6.30 and still no ambulance. In the end I had to get a taxi which cost me £30 from Bury. I got home and everything seemed different. I kept asking Kate and Paddy if they had bought a new tv or changed the keyboard of the computer. My clothes seemed different. At this time I also had a wisdom tooth that needed taking out. I had mentioned this to the doctor at Bury Hospital and he said that it could have been the cause.
Paddy Kate and Kirsty told me of the events leading up to my hospital stay. I was mortified. Evidently, on the Monday morning, they couldn’t wake me up properly. An hour later I still wouldn’t wake up. They were trying to get me to take my meds. I couldn’t, I kept sleeping. Until Paddy phoned Kirsty and she told him to phone an ambulance. They arrived that evening. I had been asleep all day, non responsive. They took me out, screaming to the ambulance. Our neighbours were out, looking to see what was happening. I was screaming for my mother. Kate said she looked in the ambulance, she was crying and I didn’t even know who she was. Thankfully I cannot remember all this. However, I can imagine what Kate and Paddy must have gone through.
The following morning, Kirsty phoned the dentist. She got an emergency appointment and off we went. I felt so faint. I had lost a lot of weight in that week. The dentist pulled my wisdom tooth, while Kirsty sat and watched. We asked him if that could have been the cause of my episode and he said it was highly unlikely.
Kirsty went back a couple of days later. She was so concerned and her softer side was out. My poor family had gone through a terrible time.
Then another attack. This time it was so weird, My eyes were playing up. I kept getting blurred vision. Eventually I covered my one eye and it was fine, then I did the same to the other one. I noticed that there was a tiny patch in the corner of my vision that was black??? Weird was not the word. About three days later, when I covered my good eye, I noticed that the black patch had got bigger. I could now only see half of everything. I went to my gp, trying not to panic. I thought that I must have an eye infection!
My gp didn’t even examine me. She phoned the opthalmologist department and got me an appointment that afternoon. Paddy came in with me and after examination, he said I had Optic Neuritis. He said it was all part of my condition! He said that it may get worse before slowly getting better. I asked him if it was serious and he said it was. He said I should hope that I get my sight back, it could be 10%, 50%, 100% or not at all!!
Well two days later, I went totally blind, I could not see. If I closed my good eye, all that was there was blackness. This coincided with my now 6 monthly visit to the neurologist at the Rehab Centre. We sat chatting for a while and then I told her about the blind episode. She went absolutely mental. Paddy was white because she was a Spanish neuro and had a fiery temper. Haha, she was on the phone to her secretary, telling her to get the opthalmologist on the line. She went out of the room to speak to him, so we never really knew what she said, but she came back and said I was to go there straight away and that she had told him to phone her as soon as he had examined me again. So off we went.
When we got back home after another examination by the opthalmologist, I received a phone call from Birch Hill, The neurologist wanted me back in hospital and said she had spoken to my gp surgery to organise this and they would be in contact with me. So, when poor Kate got home from school, I had to break the news that I needed to go back into hospital. That didn’t go down too well. She burst out crying and I can imagine what she was going through. So, we sat and waited…and waited. At around 6.30pm, a gp called me from the surgery to say she’d spoken to a junior neurologist at Hope Hospital in salford and between them, they didn’t think I needed to be hospitalised, they would treat it with a 3 day oral steroid. Which was a very high dosage each day for three days. These were duly delivered that evening. So, I started taking them and about 4 weeks later, I started noticing a change. It was frightening as nothing happened before and I was now just accepting that I would be blind in my one eye. After the initial four weeks, it slowly got better until one morning I woke up and could “see”. My sight wasn’t as good, but is was about 75% better than it was. Hallelujah!
At the beginning of December of 2010, I had my neurologist appointment. It was with a Dr David Gosal. I went, thinking it was a waste of time really. He called me in and we chatted, we went through my whole history, dating right back to 2006. Well, I was amazed. He said he remembered me as he had been one of the doctors (junior then I think), that worked with me back then. I liked him straight away. He made me feel at ease. Not many doctors that I had been in contact with (and there were many), had that affect on me.
Dr Gosal examined me, called for my opthalmology notes and then told me that he thinks everything that has been going on is related. He wanted me in hospital fora few days to do some tests. I was not too happy about that and asked him if it could wait until after Christmas. His answer was simple. He said to me, what would I prefer – to go in soon and maybe prevent being in a wheelchair for the rest of my life – or go in after Christmas and be paralysed because they could have picked up something sooner. So, that was my answer and a very good one too.
Chapter Twenty One
I got the call on 17th December. Hope Hospital had a bed for me. It was surreal really – the call I got was from a Staff Nurse called Ziggy – yup the very same Ziggy that was around in 2006. So, he said an ambulance would collect me the following day and bring me in for testing. I went in – it was totally different though. This time I could walk around with my crutches, the only thing that was upsetting was that I was going to have to have a lumbar puncture. I did not like them. First test was an mri scan. Lots of bloods, dermatologist came to look at a few things. Eye tests galore, head scan, chest x rays, which brought me to 24th December, and that was the day they decided to do the LP. A doctor arrived (no likeee), Of course, yours truly was already crying as they were wheeling in the dreaded trolley haha. Nowhere near me yet! Anyway, he tried 3 times and could not draw any fluid. Gave me a rest for an hour and then tried again, with no luck. I was beside myself. He eventually said he was leaving it as I seemed a bit upset. No, he was wrong, I was a LOT upset! All that poking about with that stupid great big needle in my spine and nothing to show for it. He’d bloody well be upset too.
So, now I got the news that there were no ambulances available to take me home. Kirsty had caught the train up from London and made her way to the hospital to come home with me. I had head via the grapevine that Dr Gosal was offering lifts to people. He is the best neurologist ever. Kirsty and I decided we would get a taxi home from the hospital, even though it cost a fortune.
In January, I went in to see my gp as I really wanted to get back to work. She looked at my notes and said that the mri that had been done in December showed no new signs or lesions, so although all the blood tests were not back yet, she couldn’t see a problem. However, work wanted me to see an independant doctor to sign me back into work.
So, on 9th February, I had an appointment in Huddersfield with a doctor – and later that afternoon I had a meeting with my line manager and HR department. The following morning I woke up and sat down at the computer and felt really strange, it felt like I was sitting on a giant marshmallow. I went to shower and got ready for my drive to Huddersfield. By Taxi, paid for by the company. All the way there, I needed to hold on to the seat belt and my crutches as I felt as though I couldn’t hold myself upright. When I got out of the car, it felt like the marshmallowy feeling was in my legs as well.
The doctor introduced himself and said that to be honest, he’d never heard of TM before, so I enlightened him to it and also mentioned the strange sensations. He told me he was quite happy for me to go back to work, provided I started off very slowly again and that I maybe tell the neurologist about the sensations I had.
When I got home, I did indeed phone Dr Gosal and left a message with his secretary as he was in surgery. I then went off and had my meeting with work. it went well and it was decided I would start work on 17th February, starting with 3 hours per day.
Chapter Twenty Two
Unfortunately, things took a turn for the worse. I had my supper, sat around, but felt really strange, so told Paddy I was going to bed. I couldn’t sleep and my legs were burning so much that I couldn’t bear the duvet to touch it. By the time Paddy came up to bed, it was almost unbearable. I told him I would have to get up as the burning was spreading to my hips. We went downstairs and after a while, I realised that this is not goot and so Paddy phoned the emergency services and spoke with a doctor who said that given my history, it’s pointless sending a doctor round, he’d just send an ambulance. So, at approximately 11pm, I was taken to Oldham Royal Infirmary and sat there waiting to be seen – Eventually at 2am a very young doctor came in and I told him what was happening. I also told him that it was ridiculous that I was there from 11.30 until now and couldn’t even get to the bathroom. No one even bothered to check on me. I had actually worked myself into a bit of a state. He HAD heard of TM (well, what do you knwo), but not much, he knew that it had to do the the spine. He had the good sense to admit me onto a ward, which happened at around 4.30am.
I was woken at around 9am when two nurses came rushing to my bed and told me that they had been contacted by Dr Gosal at Hope Hospital and were to start IV Steroid treatment immediately and that an ambulance was en route to take me to Hope. I already started feeling better just knowing that Dr Gosal was going to be there.
It was now my BIRTHDAY. Hah, happy birthday to me. Kirsty was coming up by train – so the IV was put in and I was in the middle of breakfast when the ambulance men arrived. They wheeled me out straight away, into the ambulance, lights on – when I asked if that was really necessary, they said they were following orders and had to do it. So, I was escorted with flashing lights all the way to Hope. As soon as I got there I was placed in a ward and then straight through to have an mri scan. That was not a good time. The nurse told me to get onto another bed, but I couldn’t do it and she didn’t seem to understand that I could not move my bottom half. I was so frustrated – at her for not understanding and at myself for not being able to do it. I had to ASK her to help me. In the end I got there and had the scan, then back to the ward. Dr Gosal appeared almost straight away and told me that he had been watching while I had the scan done and there was extensive damage now. This is how quickly things happen. In December all fine and in February, more damage.
Now this is where I still get a bit confused. He told me that at last they knew what was going on with me – it was Neuromyelitis Optica that I had. I thought he said that the blood tests that had come back had shown a positive Aquaporin 4 but according to Paddy, Dr Gosal had phoned him on the morning of the 10th and said he wanted me in hospital straight away as bloods had been missed originally back in 2006 – and it showed positive for Aquaporin 4. Anyway, doesn’t matter, what did matter was that he had found it and assured me that he would look after me. I had my three days of IV steroids, but was also started on a drug called Azathiaprine (Imuran) which suppresses the immune system. My immune system attacked me, so it needed to be suppressed. Dr Gosal had another neurologist from Fairfield with him and I cannot print what he said to him. But it made me laugh. He was in fact telling him that they missed something vital when I had my “encephalactic episode”.
Chapter Twenty Three
I was back to square one and was just wondering how I was going to cope with this. The first time I was paralysed, there was no pain, this time was different, instead of being totally numb with it, I was now on fire – and not in a good way!!! My whole body (apart from my top) was burning – My legs were the worst. It felt like boiling oil had been poured on me, and set alight. I am not exagerating either.
Kirsty had come up a couple of days later, had come straight to the hospital from the train station. Bless her, she had bought me a cake for my birthday which was a couple of days later. At around 12, just as I was about to have some lunch, I was told that I was going to have a procedure called Plasmapherasis (PLEX) which is basically a plasma exchange, where they remove the bad and replace it with good. I had no idea what to expect, except that they told me it required me to go into surgery to have it done? That freaked me out a lot! They explained it was not an operation, it was just that they needed a surgeon to perform it. Still no idea. Maybe just as well.
Kirsty came with me when they wheeled me down at around 7pm – She had to wait outside. It was not really an operating theatre as such, but I was now in panic mode. I met the surgeon (a woman) and another doctor and for the life of me I do not know what she was. She explained that they have to insert a canula into a vein in my neck. That is when I think I started to turn off. I did not want to know. I actually did not want to be there at all. I was crying again and I wanted some paper towel put over my face. They must have thought I was crazy. Anyway, it took about 10 to 15 minutes for them to find the vein, make the incision and all the time they were talking to me, asking me how I was feeling, and all I could say, was please, please stop telling me what you are doing, just do it. At last it was over and again they explained that I would now be good to go for my Plasma Exchange.
I was wheeled back to my bed, however, not before I had managed to wet the bed totally, (I did not need a catheter this time, thank goodness for that). However, I also could not walk to go to the toilet. I kept telling them that I needed to go and no one was very concerned, so what could I do?
Chapter Twenty Four
When we got back to my ward, Kirsty had a good look at my new appendage. She said it was like a crab haha. With tubes coming out of my neck. We had some cake and by this time it was 9pm and she still had to get a train back to our house. She said she would come back with Paddy and Kate the next day.
The following day, my family arrived and their arrival co-incided wiht Dr Gosal’s visit. That was good, because he explained what was happening and they were there as well. I would be starting the plasma exchange on the Monday. He explained that a specially trained person would come in and sit with me throughut the time. It could take up to three or four hours per session and I was to have 5 of them. Wow. He said it was not a painful procedure, but that I need to make sure (or the nurses must), that the canula stays very clean and does not get wet at all.
Showering was a nightmare. I again had to be wheeled into the wet room and helped throughout. I hated it. Each time I needed the toilet, I had to ring for someone to come and help me as I’d not yet been assessed by the physio’s. So, one evening over the weekend, I asked to be taken to the toilet. A nurse came in and I couldn’t get my gown on. She was obviously busy and so told me to sit on it and wrap the ends around me. Which I did. When I was on my way back, I told her that it felt like I was slipping. She did stop and check and told me it was fine. Just as she manouvred the wheelchair round to my bed, I seemed to slip right off it, onto the floor, it was like it was happening in slow motion. I landed on my bum! I was mortified. They had to get a crane like machine to strap me into as I could not move and they wouldn’t attempt to pick me up. I was mortified. It was visiting hours as well, so everyone seemed to have visitors and me sitting like an idiot on the floor crying again because I was embarrassed, more than hurt.
Finally back in bed, another nurse came in and told me I should never sit on my gown!!!!! What!!!! I was told to sit on my gown. The wonderful thing about this was that I seemed to have lost all my fight again! I told her that this nurse had told me to wrap my gown around me, she denied it. Later I was asked if I wanted to put in a formal complaint. What on earth was the point of that???
Chapter Twenty Five
I would like to take a little bit of time to talk about things that are non-NMO. The first thing is the amount of “other” auto-immune, chronic illnesses and a lot of my friends are suffering with. Fibromyalgia being one and which I had seen the name here and there, but thought it was something that couldn’t possibly be that bad. Well, recently (in the past 5 years or so), I have come across it so often, friends that I didn’t even know had this condition. I have learned over the years how it can affect, almost destroy a person. This really came as a shock. The pain that has to be endured with this is somtimes on par with NMO pain. It is severe. Then we have people that have thyroid problems/Hashimoto’s – lacking vitamins, not being diagnosed properly, not getting the right amount of Thyroid medication. All this causing such anxiety and worry. We all seem to be living in our own little nighmares. I know that a couple of my friends would say to me “my pain is nowhere near what your’s must be like” – that is untrue. It is all relevant. I do believe that with all my heart.
Then there are the Cancer sufferers, MS sufferers, Heart defects, I could go on and on. I don’t think there is one person with NMO who doesn’t think and feel sorry for anyone else with a condition that causes pain and/or worry to each other. What I do believe and what I want is for Neuromyelitis Optica (NMO) aka Devic’s Syndrome, to be rated with all the other illnesses. It is so hard to explain our condition because no one has ever heard of it. As I mentioned somewhere earlier, there are medical professionals that haven’t heard of it either. And, whilst I have listed some conditions, there are plenty of us that have NMO and some of the others as well as. Oh yes, it is difficult for us all.
Chapter Twenty Six
Okay so the above chapter was a slight deviation, so I will continue. It was during this time that I started my PLEX treatments. Tubes were attached to my appendage and a large machine was wheeled in to the side of my bed. The nurse explained what was going to happen. My first treatment was okay. I felt no pain, just a tingling around my lips and energy draining from my body. I was given lots to drink and stuff to nibble on. All okay. The next one was scheduled to take place at 9am the next morning. At 9 the nurse arrived, but could not start as the wrong Plasma had been sent, so it all had to be reordered etc. It wasn’t until around 1pm that she started and only finished after 6. It really drained me. I could bared get myself onto my legs with the help of my crutches and the nurses and onto the commode to go to the toilet. I felt as though I had gone about 10 rounds with Mike Tyson (for want of a better boxer lol). The nurse decided that we would have a break on the Wednesday, which was okay, but I so much wanted the stupid thing protruding from my neck, gone. It was causing me much worry as I kept thinking if it comes out, I would have to do it all again.
So, on the Wednesday, I woke up and my stomach was really upset. I called for a nurse to take me to the toilet, and to my delight I got one of the Trainee nurses who were absolutely fantastic. She helped me into a wheelchair, took me to the toilet, got me onto the toilet, then left me and when finished I rang for her and she came almost immediately. I told her I didn’t really feel very well. She immediately told me that she was going to put me into the wheelchair and then get a container to take a sample!!!! I know – gross! Well, this she did then wheeled me back onto the ward, and with a promise to come back in abut 10 minutes, to take me for a shower.
Instead of just leaving me there, she stayed with me, making sure I was as clean as possible whilst sitting in a shower chair. She was so gentle and so sweet. I really at this stage was starting to feel nauseous as well. Oh dear, my stomach had started again and I was being sick – all in the shower. The poor girl, she was absolutely fantastic. Nothing was too much trouble. She was doing her job and she was also talking to me as though there was nothing to worry about at all.
Eventually I got back to my bed, totally exhausted, sweating profusely and felt as though I was burning. (not nmo, but feverish). Eventually she told me that a doctor was coming to see me. About 15 minutes later, a doctor arrived and told me that there were a couple of people who had the Novo virus and they suspected I had caught it. It was a superbug which could make you very ill. A little while later, My Dr Gosal arrived, he came each and every day, somtimes even twice. I often joked that I loved that man so much. He was not happy about a probable superbug infection and explained it was quite serious. Later that day, it was confirmed that I did indeed have this. The only way this can be passed from one patient to another is by hand contact etc., and as I was bed bound, except to be taken to and from toilets and showers, I must have picked this up from one of the nurses, surely? Anyway, by that evening, I could not eat anything, drink anything, although I was taking sips of water even though it came right up. Then of course there was the stomach to contend with. I swallowed my pride (what I had left), and let nature take it’s course. A commode was parked next to my bed for easy and quick access.
The following morning, the whole of the ward was closed – this meant that no one could have visitors, no people other than nurses on duty and doctors even were limited. I could also not receive my PLEX. There were cleaners that cleaned and disinfected every nook and cranny in our ward. For the first 24 hours, all I could think about was how bad I felt, how sick I was being and how my stomach was just too bad for words.
On Friday I was surprised to see my PLEX nurse arrive. She said that Dr Gosal had said I really needed to have the treatment and I wasn’t being sick anymore, and my tum was okay since the night before. So, it was all systems go for me. The hospital wards though remained closed. So it was that I had my third dose of Plasma. My next one was going to be on Saturday and the last one on Monday.
I must just add, even though there were skeleton doctors on during this period, Dr Gosal still came every day. Not only would be examine me, but he would take the time to chat as well. I was devastated that I could not see Kate and Paddy over the weekend. They weren’t allowed in. It was awful. On Monday I had my last dose of Plasma. It took various times to do. Sometimes the nurse would stop for a while as my blood pressure would become erratic or something or other would be wrong, but we got there in the end. At one stage, she thought the line was coming out or that it was blocked so they had to call for a specialist to come up and check. She got the go ahead, but that put us back an hour or so. I think we finished at around 8pm. It had been a long day, a very tiring day, but I was so glad that it was over.
I think I expected a miracle. They had told me that coupled with the steroid infusion, they were hoping that I would get some feeling back. I lay and thought about the last time, without the Plasma Exchange, but nonetheless! Anyway, it was just too depressing for words. I was thinking back on those awful 6 months of my life, of the trauma of the rehabilitation process, of the not knowing what to expect. Well by Tuesday, I was still lying in bed unable to move my bottom half and that is when my physio’s arrived. Hmmm, well, I had the intro when I arrived on the ward and now, they said as soon as the hospital allowed the wards to be opened, I would be doing my time.
Chapter Twenty Seven
And so, it was two weeks later that they allowed the wards to run as normal. I was managing to go to the toilet, albeit with help still. But apart from that, I still could not walk.
The physio arrived. It was a slow and painful and emotional few weeks. They gave me a zimmerframe and I learnt how to walk a couple of steps with it. A week later they took that away from me, replacing it with a stroller. For those who don’t know what that is, it’s like a zimmer, but has brakes on and a perch. The first time I used this, I panicked. I really did think that I’d be on the floor in no time. Anyway, I mastered the art and after a couple of steps, holding on for dear life, I did it!
First a few steps, then right to the other side of the physio room. After using it in the physio room, we started strolling down the corridor, until they felt that I was okay to use it with the help of one of the nurses. This was a great achievement for me. It was now four weeks after my infusion.
I got myself into a routine. I would wake up, have breakfast and then pack my little stroller with toiletries and walk down the passage to the wet room to have my shower. I would transfer to a shower chair, then back to the ward, get dressed (you have no idea how long all this took), get dressed and wait for Dr Gosal to arrive. He couldn’t believe how well I was doing.
After a while I was allowed to walk around with my stroller by myself. I was still nervous as I still had very little feeling in my lower body. However, this soon changed with all the physio and there was talk about sending me back to Birch Hill for rehabilitation (as before). I decided I did not want that, I wanted to go home. I had been in hospital a total of five weeks. The sixth week, I was brough my crutches. I was so nervous. I was almost panicking. I didn’t know if I could use them.
Chapter Twenty Eight
On the Seventh week, Dr Gosal came in and told me that I was doing so well, if the physio’s were happy, he would send me home. I was over the moon. I was determined to do this!
Every opportunity I had, I would walk little bits, going further and further. By the third day, I was taking myself with the crutches to the toilet. They physio’s came and spoke to me. They told me that an OT would take me home, just for an hour or two and see if I could manage and if I could, they were happy to let me go. OMW!
The next day an OT and myself went to my home. I walked up the stairs, albeit gripping the second railing so tightly, got into the bathroom, sat on the toilet, transferred to the shower chair, only problem I had was getting my right leg across, but she showed me how to manage and to work on that leg.
We went downstairs and had a cup of coffe, waiting for Kate to come home from school. When Kate arrived, she was so happy to see me back – I told her I would be home very soon. And two days later, I was.
Chapter Twenty Nine
And so it was that I left Hope Hospital (now Salford Royal) with Dr Gosal’s promise that he would see me in a month’s time and in the meantime I was still on a very high dose of steroids, immune suppressants, which would be a lifetime thing, my nerve pain meds and all the others too.
I know that everyone who’s stayed in hospital, more than once, will understand that when I left, I felt elated to be going home to my family again, but anxious too because I wondered when I would be back. So far, it has been 5 years and no further attacks.
And so, thank you all so much for reading my story. I have left so much out, but just some of it, was – my mom died – this was such a sad time for me. I went through many hours, thinking of how I wished I could have done more for her. Visited her more, kept her at our house longer, realising what a beautiful person she was, wishing that I could talk to her again – just one more time to tell her how much we all loved her.
I also started getting things that I needed (maybe wanted), spending far more than I should, causing overdraft charges, left, right and centre. I had to borrow money for my rent, for electric, for vet bills, you name it. I cannot tell you how upset this made me. Some people understood and helped whilst others just unfriended me. It hurt, but it was all my fault. I tried so hard to right this wrong but I think in the end just ended up not righting anything, if I’m honest. I do of course still owe people money, and I will repay all if it’s the last thing on this earth that I do.
Another thing that happens is my dear husband. I do love him and he does so much for me, but although he understand what NMO is and what this awful diseas can do, I don’t think he gets the whole picture sometimes. Just silly things that he will say, I still, after all this time, get upset with these type of things. I would expect it from people who didn’t know what it was like living with this.
My daily functions are limited, if I go out, I need to come home early, I just cannot make it otherwise. I get tired, I slur my words. I laugh a lot. Sometimes I don’t feel like smiling, but I do. I feel lost sometimes, as though I will never find myself again. But then I do and all is right. Until the next time.
I cannot sleep, the pain gets so bad sometimes that I really do wonder if I will cope, I pray a lot, my prayers are always answered. I never take anything for granted. I know that things can happen in an instant.
I worry a lot. I know that Paddy thinks that he is the only one who worries, but he is so wrong on that one. I think all the worry contributes to some of the stress, which in turn causes pain!
The one thing that is constant is Skye, my beautiful dog, who is spoiled rotten by me. I love her so much. She is so faithful and returns the love in so many ways. She is my partner at bedtime, my partner when I feel down, my partner when I worry, cry, when I’m sad. I love her to bits.
My children, they understand. Kate knows only too well all the things that happen with NMO. She does not like to talk about NMO. I can see it in her face. I know it is because she is scared. Kirsty, worries like crazy, I know this. She is so good to me. Unfortunately she will question everything and sometimes I just do not have the answers and when I do, she will argue that they are wrong. She worries about my weight, I worry about my weight. I try, but just cannot shift it. I still take steroids but only a very small dose now, and I know I cannot blame them anymore. I also know that none of my family will read all this. Paddy won’t because he does not use the internet. Kate won’t, because she won’t want to and I am fine with that. Kirsty won’t even though I have e-mailed her the first few chapters, because she is very busy and probably deep down, also doesn’t want to. I am fine with that.
Another thing that happened, my younger brother, Stuart died in August last year. It hurt me really badly. Not on the day that I found out, but about a week after. When I lay in bed thinking of how close we used to be, even when we were married to our respective partners. How much fun we used to have, Stuart and Gill. What good times they were. When we were children, we used to fight like cat and dog, but we always had each others backs. He went on to re-marry and left behind a young woman who was pregnant with his child plus a family – I know that I will never be a part of that family – I am fine with that too.
So, now am I happy with my life? Yes, I am happy that I am still here, still laughing at stupid things. Still grateful to others, and still love my family more than anything in the world.
I am closer to God than ever before. He is always around me, always there for me, always my Comforter. He is always listening.
I am so grateful to my family, to my beautiful friends who have stuck by me through thick and thin. Who have never given up on me. My friends, some whom I have never met, probably will never meet, but they influence my life all the time.
Would I change anything? Yes, I would change my bank balance, I would love to be able to do more fundraising for my charity and maybe I will in the near future. I would love to be able to have more animals in my life. But that’s about it.
Oh, one last thing. I am going to be a grandma. Kate and Zak are pregnant and will have the little one in February. I cannot wait. I may not be able to do all the things that grannies are supposed to do, but I will love the little one with all my heart and soul.
So, that’s about it. Thank you all so much for reading my journey with NMO.
I am in the midst of trying to get a diagnosis. I have MS and NMO symptoms. That aside, I just really loved reading your story. I feel like I know you. All that you’ve been through, I’m so very sorry for all the pain. I hope you’re doing well and congratulations on becoming a grandmother. Stay well 🙂