My story started with the year from hell, with going from a young fit 47 year old, wife, mother, full-time worker, it all started after a trip to Mexico May 2009, I had suspected swine flu, as given Tamiflu tablets, after taking them for a week, was told I didn’t have swine flu after all. I then started with chronic constipation and chronic pain, (although that wasn’t unusual for me as I suffer from IBS). I had to be admitted to hospital, as I hadn’t been for weeks and I had started to bleed from the back passage, after several tests and visit to hospital, they found nothing, after managing to get my bowel under control with laxative only, I have no sensation of needing to go at all, if it doesn’t happen within 3 days, i general have to sit on the loo until it happens, (doctor wanted me to have a bag fit but i didn’t want too). It has changed my life; I have to plan everything around the toilet. then I started to drag my left leg, pain in my left hip was getting unbearable now, after being referred to yet another doctor, more tests, and given a walking stick to stop me falling over, I then had no voluntary movement in my left leg, my right leg was starting to go that way too!
Then one Friday morning I awake with a small tremor, as the day went on the tremor became uncontrollable and very scary, went to A&E was told nothing they could do, as I was awaiting appointment to see a neuro doctor. Since then I have seen two neuro consultants who have diagnose me with functional neurological disorder in April 2010. Finally an answer! I thought, even a treatment. But not really, phyiso doesn’t seem to help, the more i do the worse the pain, I have to use a wheelchair outside now, as I am unable to manage, if it wasn’t for my husband and family I don’t know how I would cope every day, I was then given a support worker for 6 hour a week, which was a life line to me, I am a very positive person. and have been all the way through this journey, there isn’t much help out there for this terrible condition, that leave you very frustrated and angry as to why or how it happens, but thankfully my family and friends have and are brilliant, and keep me going, I also going to lose my job over the next few weeks, as I am unable to go back due to my condition, I did enjoy my work for the same company for over 20 years, but to me it’s the last straw, in my uncontrollable life at the moment. But they keep saying to me, be positive, on a regular basis, but it’s bloody hard. But thanks again for the Facebook group; which I stumble across around 6 months ago, the fact that I am not alone does give me some comfort a least.
My name is Marie, I’m 48 years old, I was a full-time worker, I’ve worked all my life, I was a fit person, I went to the gym 3 times a week. I’m a mother of two teenagers, I’ve never had any phyiscal/phycological problems, apart from ibs most of life! I was diagnosis with Functional Neurological Disorder in April 2010, my legs dont work anymore, I have to use a wheelchair, my bowel doesnt work, my bladder is starting to fail, i’m in unbearable pain most of the time!!
On a positive note, I have learned to drive with hand controls, which has given me so much independence, although I need someone with me, generally, I go swimming, I’ve recently started on some exercise machines that exercise you. I just get but on them, they do the work, and my support worker has become my friend. We do lots of things together. Being disabled has changed my life forever; consultants have now said I will not recover, as things have gone on for 3 nearly 4 years now!! I was totally gutted by this, as there is little support on this horrendous journey, an illness which doctors know very little about, we must stay positive, keep smiling!!!
I thing I know about this condition;
life goes on as they say,
It’s just a bit different now!!
You are not alone, keep positive!!