TM & ME

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It was almost the summer of 2015 & I was determined to get myself "summer ready" - eat healthier, exercise more, drop a few pounds. I embarked on my new lifestyle with enthusiasm & vigour; joined a gym; purchased a brand new pair of trainers a juicer, and masses of vitamins and supplements ditched the wine, unhealthy lifestyle and unhealthy foods.....

Everything was going well until a few months in I started to feel unusually tired, lethargic and demotivated. I would literally find myself falling asleep at any opportunity, taking naps whenever and wherever I could and feeling all round exhaustion. To the point when just getting through my day was a massive struggle. At the same time, I noticed a dull ache in my lower back and lots of headaches. I put this down to my "new healthy lifestyle" and the fact that my body was in shock and turmoil trying to adjust to this new life with tons of exercise and zero wine!

This went on for a few weeks and I noticed the headaches were getting worse, and my legs started to feel really tired and wobbly even after a short distance of walking. I remember walking to the train station in the mornings and literally being overtaken by really small children and elderly people, in fact, anyone and everyone! One minute they were behind me, the next overtaking me, and before I knew it they were mere specks in the distance!

By the end of May, there was no change, and I went to see my GP - something as a previously healthy person I never usually did: preferring to self-medicate if necessary. I explained my newly acquired symptoms particularly my funny legs, backache, lethargy and headaches the GP was less than sympathetic and abruptly commented, "don't worry it's not serious, you're not going to die of a brain tumour." I left my surgery upset and frustrated but convinced that maybe she was right, maybe I was overreacting and there was nothing wrong with me. Afterall she was the experienced health professional and if she didn't think it was anything it mustn't be anything!

Over the next couple of weeks my symptoms appeared to get worse, I had zero energy, a constant pounding headache, a "funny head," - where I couldn't "think straight" a dull backache and really, really tired and tingly legs that didn't appear to want to walk or take me anywhere! I returned to my GP a few times more and each time I was dismissed, more politely and tactfully these times, but dismissed nevertheless.....

Whilst at work I had a few "funny turns" and blackouts and ultimately ended up in A&E in the back of an ambulance. Each time I would explain my symptoms and each time I would be sent home with no answers. I remember on one occasion when a doctor suggested that it might "all be in my head" and "had I ever been diagnosed with or have a history of any mental disorder!"

Enough was enough so I turned to Dr Google.....I spent literally ages reading and researching and came across some articles for Transverse Myelitis. My symptoms were so similar, and I was convinced that that was what I had, but I was still reeling from my previous encounters with medical staff and doubt crept in...was I just being a massive drama queen & hypochondriac?

By the beginning of July, there had been no improvement in my symptoms, in fact, I felt they were getting worse, my legs were really heavy by now. I had a constant pounding head 24/7 and found it a struggle to walk, stay awake, concentrate and get on with my day to day life. Then one afternoon whilst at work, I noticed that the back of my legs and bum felt really unusual - tingly and numb. Like my bum was huge and hanging down all the way to my knees - I remember telling someone that I literally felt like I had a baboons bum! Whilst sitting in A&E I remember showing a friend my previous Dr Google searches and telling him that I was convinced I had this really rare disorder called TM.

I was admitted to the hospital, and there I stayed for a week, on a drip, with lots of pills, blood tests, scans, MRI's, and a spinal tap - but no definitive diagnosis. Initially, I was seen by a neurologist who ironically thought my symptoms were as a result of a brain tumour and to be honest I've never felt so terrified waiting for the test results, whilst trying to prepare myself both practically and emotionally for the worst. In hospital I had so much time on my hands and I was so scared that I began to read and research, particularly TM and it's treatment, as I was still convinced this is what I might have. I noticed that there were lots of clinical trials for plasmapheresis where I live. I researched this some more, but unfortunately, I didn't qualify because it had taken so long to get a possible diagnosis that I had missed the "within six weeks from the onset of symptoms." I was now almost four months since my symptoms began! I felt so angry, let down and disappointed.....

I left the hospital a week later, armed with a carrier bag full of meds, a much more positive attitude and lots of appointment dates for more tests and meetings with neurologist and consultants. I was really scared but determined that I would remain as positive and optimistic as I could. But this was easier said than done. By now my walking was really badly affected. My legs and feet felt weird all the time - weak and heavy, uncoordinated, tingly, pins and needles, spasms, unable to feel hot and cold, I felt exhausted and despite this and lots of sleeping tablets, I couldn't sleep - I would just nap sometimes for 5 minutes at a time. I was unable to do day to day simple tasks and desperately wanted to return to my "old life" I felt frustrated and mourned the "old me". Following a few weeks at home, I adopted a "business as usual" attitude and tried to return to my life before TM; big mistake! I eventually took almost 6 months off work which is probably one of the hardest and best things I did. It gave me lots of time to think and reflect on my new circumstances and to come to terms with the changes this brought.

Going from fit and healthy to being diagnosed with TM & Neurosarcoidosis & being left feeling like I'm trapped inside a 90-year-olds body had not been easy! But I've tried to remain as optimistic and positive as I can, both for myself and for my kids. Three years on and life is a lot different now, although I try to always adopt the mantra for every problem there's a solution and its crap but could be crappier! So I've learnt to look at things differently, tried to look at other ways to do stuff, or things to make my life easier. For example, I spend an inordinate amount of time on the internet as I'm a true believer that knowledge is power. I've invested in lots of ideas and things to help me, both practically and physically. It not always easy and I still have times where I get frustrated and miss the "old me." But I've made it my mission to embrace the "new me" and live life to the fullest. Life will never be the same for me post-TM, but this is the life I've been given and I'm darn sure that I'm gonna get on & live it to the fullest and in the best way possible.......