A strange title you may think, but it is true. Life has thrown you a bad hand, and it does suck, but you have to ensure you keep smiling and laughing!! Just think for any disabled or able bodied person the day they sit on the couch stuffing their faces and doing nothing makes them feel worse than getting up and living. What I am saying is the less you do the less you want to do, the more you do the more you want to do. A down day will always mean my transfers from my wheelchair are bad, I will inevitably end up falling and everything goes wrong. On an up day things are just easier and life is happier and the world is a better place. It takes a lot more energy to cry than it does to smile
Me My name is Annabelle Moult, I was born on the 5th August 1982 (I am 30 this year arrrggghhh!!!!). I live with my lovely Husband in Buckinghamshire UK and work at New Era Cap Company EMEA. 5 years ago this year on the 3rd September 2007 I fell ill, the good thing is though that 1 year to the day of the 5th year Anniversary will be my 1st year Wedding Anniversary to my gorgeous husband Danny, who has made my life a better place by being in it, and without his strength and support through all of this I would be in a much worse place. He helped to save my life!! And now the bad day has been turned into a good day!!
What happened? 5 years ago this year on the 3rd September 2007 I woke up in the morning with a very bad headache and blurred vision (I initially thought I had a very bad vino hangover!!) The day carried on and I started to get really painful pins and needles in my legs, so I kept having scolding hot baths as this seemed to ease the pain. Danny (my Hubby, but Boyfriend at the time) took me to see the Harmony Doctors at the Hospital, I was told I might be anaemic and to go home and rest and go to the Doctors in the morning!! So I went home went to bed as I was told, in the middle of the night I got up to go to the bathroom and collapsed. I realised that my legs were not doing anything, so shouted through to Danny that my legs were not working and we needed to get to the hospital. He carried me to the car and we went to AandE.
Hospital At the Hospital I was made to sit on a hard trolley for nearly 13 hours before someone saw me, by this time I was paralysed from my chest down and my vision was decreasing rapidly. The Doctors could not work out what was wrong with me I had MRI Scans, Lumber Punctures, Plasma Exchange, so much blood taken every day all my veins gave up, I was put on a very high dose of steroids for the first week to help bring down the swelling in my brain, which they had seen on the MRI Scan. 3 days later I was totally blind. I was initially at Stoke Mandeville hospital but it was decided I be moved to The John Radcliffe in Oxford due to the high standard of their Neurological Care. I was in hospital for nearly 6 months, they were unsure of what was wrong with me and due to how quickly my illness came on they were unsure if I would ever get better (which they informed my mum and Danny). The JR were magnificent, I had Doctors around me all day every day trying to work out what had happened and what was wrong with me. Luckily I was allowed to have someone (Danny, my Mum or a family member) with me all day every day, this enabled to keep some normality to my life, even if it was just someone getting me up and helping me to wash and dress. Some days going to get a coffee or lunch in the hospital. It was vital that this was done and it helped to keep my spirits higher than expected. I initially dropped down to 6 stone and was so frail I could not even put my own hair up or brush my teeth. But that was a small mission I was able to complete within a month or so. I was moved back to Stoke Mandeville once I started to get my strength back, my eyesight had come back so I could see shadows and although still paralysed from the chest down I was able to work my wheelchair and manoeuvre around. I spent about 6 weeks in the Spinal Unit where I did physio every day, wheelchair skills and general everyday things to learn how to best work with living in a wheelchair and being blind. I left hospital at the end of Feb 2008 at nearly 17stone (due to the steroids), fully wheelchair bound and blind (although I was making more definition of things and starting to see a little colour). I have always tried to maintain a sense of humour and never ask ‘why me’ in my eyes why should it not be me?
Work As said above I work for New Era Cap Company, who have been great in supporting me throughout my illness. They have made the offices accessible for me to get around and I have a large screen with magnifying software to ensure I can see what I am doing and working on. I left hospital at the end of Feb on a Friday and was back in work by the Monday!! Mad you may think, but it kept me sain. I was back to work 3 days a week for the first 6 months, just to ease me into working life again. I was also very tiered all the time so I had to be careful that being back at work did not take me back to square one again. By the September that year I was back at work full time and have been ever since. Remember just because life has changed does not mean it has to stop, there is Access To Work in the UK which helps to assist Disabled people get back to work and live as much of a normal life as they possibly can, ensure your work are aware of your situation and ensure you keep them updated and in the loop with you and what is going on so they can support you in the best way they can. New Era have supported me through this whole thing and I am very grateful to how they have dealt with it and given me the support I need to maintain a job and normal lifestyle.
Friends and Family It is vital to keep positive people around you and unfortunately when times get hard you will find out who your friends and family really are, I have lost friends through this and also pushed people away, but it will make those that stick around even closer to you. My friends and family have been amazing and I could not have got to where I am now without their help, love and support. Never give up, as said a down day is harder than an up day, keep smiling and laugh it is vital to ensure your wellbeing.
Diagnosis It took 2 years before I was Diagnosed with Devics/NMO, so for that time until my diagnosis I felt like a total alien, I did not know what was wrong with me, I had no idea what to do or what to read to help me understand my illness and I could not find a person in a similar situation to talk to and understand the situation I was in. It was a 2 year battle and sometimes quite a lonely place, but once I was diagnosed it was great to be able to have information to look into and understand what was going on inside of my body. I was able to start helping myself to get better. They say NMO is incurable, but never say never.
Physio and Alternative Therapies It is amazing how in tune I now am with my body, but the way I see it is, if you are tiered sleep, if you are hungry eat, if you are tearful cry, if you are angry shout. Bottling things in can only make it worse and hurt you in the long run. I have done a lot of work to get where I am now, but I will not be defeated. DO NOT GIVE UP. I have Physio once a week.; At first it was twice a week and I was paying far too much money a month (I had not been fully diagnosed so I was a bit of an alien) I did not tick boxes and so felt a little lost with what was wrong and what needed to be done to get better. Once diagnosed with Devics/NMO, due to the fact it is linked with MS I got accepted to The Chilterns MS clinic which allows me to have Physio once a week and for a donation rather than spending as much as I would on another mortgage going for private4 physio!! It has been great to be around some likeminded people and realise that yes bladder infection are a regular occurrence, and Yes they will make you go a little bit wobbly physically and mentally for a few days (I tend to get a completely new language and turn my words inside out, upside down), but at least I know that is part and parcel and things are not getting worse. I have found out that the way I keep going is just by keeping going. I may be registered blind and wheelchair bound but, I work full time; I have a leg bike and standing frame at home which I try to use at least 5 times a week if not more. I have found the art of meditation and reiki Finding alternative therapies has really helped me and helped me keep a PMA. I am in pain most of the time, this can vary from day to day pain relief some days does not even touch the sides and the pain can really ware you out, so this is also why I have looked at alternative therapies, I think it is vital if you want to get better to discover all routes (as long as they are not going to harm you).
My list of therapies so far have been: Physio (a weekly thing and vital to keep things moving around) Psycho therapy (good to get things off the chest) Homeopathy (looking into the body and alternative medicines and foods) Breath work (a way of breathing to get the energy around the body to revitalise the body and get out any energies that are negative) Shamanic Healing (a bit out there but something I found that really worked for me) Reiki (gives you a moment to think about the inside of the body and what is going on) Reflexology and massage (to help the circulation and take down any water retention) Yoga (to keep the body connected and keep me flexible) Food/Diet (a very important part of healing to eat the right foods and ensure you are getting the right nutrients) Super foods (such as wheat grass and bee pollen to help the immune system and energise the body)
I have trained to Reiki Level 2 and find that the energy I receive from doing this on a regular basis can ease the pain that I am in and help with a healthy state of mind. I try to meditate and do Yoga a few times a week. The meditation ensures a healthy state of mind and support from another aspect to ensure my wellbeing. Doing Yoga helps my body connect with itself and keeps me in line. Building my strength and focus on getting better. I believe in Shamanic healing and have done a number of soul retrievals and shamanic eye healings which build my awareness and my body and mind. Each time I have done one of these therapies something heals and amazingly supports in my wellbeing and improves me to my goal of walking and seeing fully again. Without having found these alternative therapies my and body would not be as well as they are now and the continual improvement is a blessing. Without these I would not be where I am now and I would not be as mentally healthy without them.
Life Goes On The list goes on and I am still trying things out. I can say after 4 years I am still improving and moving forward. I have nearly lost all of the steroid weight an am a stone off my fighting weight 10.5stone. I am registered blind but can now see colour and things in more definition, I have taken the magnifying software off my computer (but still have it set on the highest disability setting) and I am now paralysed from the Hips down rather than the chest (I am approx. an L1 rather than a T4).
Life sucks I know that but it will get easier just be positive. I still have up and down days I just know how to deal with them.
Remember Life is for Living, Loving Smiling and Laughing xx
If you would like to contact me to ask any questions or just to chat then I would be more than happy to do so. You can either contact me at firstname.lastname@example.org
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