In Their Own Words

Jonathan Rock
Derby England

Being a relatively fit and active 28-year-old who enjoys all outdoor activities from surfing, snowboarding to walking and soccer, I never thought I would succumb to such a debilitating syndrome or illness or however you would classify TM.

It all started less than a month ago. It is only with the power of hindsight that I am able to give this experience any sense of form or order. At the end of August 2002, I was enjoying a fantastic holiday with around 20 friends, camping in a glorious part of Wales. However, as the weather was so good, the surf was poor, which led to a fairly hectic drinking schedule. After a solid week of beach parties and a day on the beach in glorious sunshine, we decided to go fishing to catch our supper. After an hour of high octane mackerel fishing off some sheltered rocks, I began to feel a little ill. A long walk back to the tent completely exhausted me and I dived straight into my sleeping bag thinking it was nothing more than a little sunstroke. After a feverish night, I awoke the next day with swollen spotty tonsils and an unsightly cold sore developing on my lip. None of this was that unusual for me, being such a slave to the sun and beer.

I fought the illness off and by the following day was feeling back to normal, apart from the blister on my lip. I returned to work the next day. The following weekend, I enjoyed a fantastic weekend with my friends, ending with a wonderful concert in the open air, and my enjoyment fuelled with a bottle of quality red wine.

From here, things took a strange course which may mirror your experiences. On Monday, 2 September 02, I noticed a strange sensation on my stomach and thighs which felt like sunburn. Having clothes next to my skin felt very uncomfortable. However, I carried on at work, putting it all down to my hedonistic lifestyle. The following day the sensations worsened, but still I carried on working. Finally, I decided to call it a day early to allow my body a bit of time to recover. After a little sleep, I felt a little feverish and noticed my body aching all over. I put it down to nothing more than a brush with flu. Expecting my body to correct the imbalance itself, as it had done many times before, I went to bed thinking little more of it.

However, on waking on Wednesday, things had gone very strange. It felt like I was wearing a thick winter wetsuit as all feeling on my legs and stomach had been numbed. Not painful, just not right. I also noticed I had the shakes quite badly and was walking more like a 78-year-old than a 28-year-old. By now, I had decided a trip to my General Practitioner was required. Upon seeing him, he noted from the presenting symptoms that it was probably nothing more than a strain of influenza. I mentioned I had concerns with it being in my spine or back. I do not know why I thought this, but it just seemed to be so. I was sent away with antibiotics and told to give blood and urine samples and return the following week.

After the visit, things started going rapidly downhill. Firstly, I found it impossible to pass water and throughout the night, the pain was becoming more and more unbearable. I had tried to sleep everywhere, including in the bath and on the toilet, so if I needed to go, I did not have to worry about stumbling around my house. The relief never came, so at 11:00 AM on Thursday, I called in the emergency doctor. I was then presented as an in-patient on the urological ward at Derby City Hospital. Not a pleasant experience for a young man to be catherterised and placed in a ward where the average age was well over 60. Nurses gave me strange looks and the sympathy vote was certainly wooing the young ladies. You will notice that at all stages, I managed to find humour in all situations, which I believe has helped my recovery thus far and is a must for all sufferers.

Numerous tests were carried out on every part of my body; blood tests, urine samples, ultrasounds, x-rays and physical examinations, as you will all well know. Everything came back clear. With no forthcoming explanation, I was beginning to think the symptoms were psychosomatic, but as my strength was weakening along with an inability to walk, I was still sure it was a spinal problem. I kept pushing for an MRI scan. But it was only when all other avenues were exhausted, did they grant me my wish. Finally, on Saturday, 7 September, I was given an MRI scan, following which the attitude of the doctors and nurses changed. I have always asked lots of questions so I know what is going on, but now people had stopped answering them. I knew it was something bad, but still had no clue as to how bad or what it was. After hassling the SHO's and registrars, someone finally told me I possibly had a condition known as Transverse Myelitis or Guillian Barre. However, as both of these were so rare, no doctors had come across it before. Therefore, they were unable to give me answers other than it is serious and there is a chance I may never recover.

The bottom fell out of my world. I was planning a snowboarding trip, my job running a rally driving school, my surf trips, my walking holiday in the Polish Mountains, all gone and for what; for something that no one knew anything about. Words cannot explain the low I felt. But I am sure many of you know what I was feeling.

However, I am a stubborn fellow and refused to believe this was it; game, set and match to some bastard who had decided he did not want me to play anymore. Literally within hours, I had decided what I needed to do; look at the worst possible outcome, look for the positives, and then anything on top of that was a bonus. I am lucky in that I have the best group of family and friends any man can have. They were all willing to stick by me and helped me laugh. OK, I could not surf, but I could get in a canoe (as any surfer knows, canoists are our mortal enemies; to go to the other side was not an option). I could not snowboard, but I was always in awe of the crazy dudes who sped down the mountain on their backsides and skis on their arms. My friends could wheel me around the pubs and clubs. Hey, who knows, the wheelchair would certainly be an icebreaker in talking to all of the beautiful women. My life had changed, but I was determined to make the best of it.

I knew throughout every bad experience in my life that you always had to look on the bright side. No one achieved anything by being miserable and dwelling on ifs and buts. You had to look at what was going on and alter life accordingly.

Things moved quickly from here on in. I was transferred to the Neurological Department of the Queens Medical Centre in Nottingham and was immediately given a lumbar puncture; not a pleasant experience as they had to do it three times to get enough spinal fluid. The results were through in a matter of hours and it seemed likely that it was post infectious TM and IV steroids were administered immediately. The staff there were brilliant, answering all my questions honestly. I realised now that at least things were not going to get any worse. The tests continued, and they informed me they needed to check all avenues, including HIV, syphilis, MS, etc. Again, all very scary, especially due to my wayward time at university, but at least I knew I was in good hands.

Saturday night, Sunday and Monday were all a blur with so many visitors, doctors and medical students and having to explain the unexplainable to all. Although not technically paralysed, lesions has been noted at T6 and so feeling from the chest down was limited. The pins and needles in my arms had reduced and my lung capacity and breathing had not been affected. I now know how lucky I was.

The more information I was given, the more I could cope with my situation and tried to draw on all the positive aspects. I cannot stress enough the importance of a strong positive attitude. I was determined to prove people wrong. I was expected to see improvements from about two weeks after the three day steroid treatment. I was still catheterised and had not opened my bowels for a week. On Tuesday, I asked for a wheelchair so I could familiarise myself with how my life could be. Not too bad, I thought, but it was not good enough. The physiotherapist gave me exercises to prevent more muscle wastage and DVT. These were done on my bed. I practised these until I was exhausted.

As more and more tests came back clear, the original diagnosis of post-infectious TM seemed to be correct. My spirits, although never dropping, were rising and I asked for more exercises to help me walk. By Wednesday, I was able to walk, albeit shakily behind the wheelchair and much to the amazement of the professionals around me. Every little step seemed like a miracle and made me push harder. The staff and other patients in the ward were excellent. They never smothered me with sympathy, but treated me as a normal person and joked at my wobbily walk, my catheter, and the amount of laxatives I was taking. One nurse said she was even looking forward to giving me an enema. My friends and family also remained strong and continued to treat me as a normal person. These were all vital, I believe, to the recovery I have made thus far.

Thursday, 12 September, and another patient asked to borrow my wheelchair for an hour. No problem I thought, I could just lie in bed and snooze. However, after a few minutes, my curiosity got the better of me. I had amazed the doctors thus far. I had been building the strength in my legs and thought I would give walking unaided a go. What is the worst that could happen? I could fall down and hurt my pride, or the laxatives might kick in and may land me with an unwanted present. I put my legs on the floor and felt confident when they held my weight. I slowly let go of the windowsill and slowly shuffled unaided. What a feeling, ecstasy, unbound joy, pure thrill as I began to stumble around the ward. With plenty of encouragement from the other patients, I was almost in tears. At last, I realised that things were going to be far better than I had ever imagined. Less than a week ago, I was told I may never walk again. But here I was, like bambi on ice, and it was the best feeling in the world.

There were still the down times. Although I knew I was lucky, I still felt like asking, why me? I have never done anything bad. I was fit and healthy, and despite a few vices, I saw myself as a good, honest, genuine, caring person. Why not afflict the criminals who harm others? But then I realised this would not help me. There were other bad times, as when the laxatives kicked in, boy did they kick in. The first couple of visits were fine, but then I got a little cocky, left it a little too long and left a nice present in the medical bin of soiled underwear. Times like these made me cry and sob. But I knew I had to snap out of it and sharing the embarrassing times, and hearing the laughter, soon made me feel better. Another hard time was having the catheter removed and waiting for that first urine to pass through. After 12 hours and many attempts, the first dribble was applauded throughout the ward. Although not brilliant, I knew when I had to go and this was a relief. All that I needed to do was to learn how to be more relaxed and not try too hard. Something which I have yet to perfect, but every visit to the toilet makes me realise how lucky I am. This all may sound strange, but for all of those who have suffered, you will know exactly what I mean.

On Friday the good news just kept rolling in. I was HIV negative, the blood bands showed it was very unlikely to be MS and everything was clear. These may appear small things to many, but to me, I took every bit of news as a boost to my confidence. I knew that my positive outlook and confidence were going to play a major part in my recovery, and I know this has been the case for many others. I was also told that I could return home. Even though I live on my own, to be back among the people I love was the best feeling of all.

It has been two weeks now since I have been home and I will not lie and say it has been easy. Every little pain or ailment scares the living daylights out of me. I have not been to a doctor for many years, but have been on the phone almost every other day. Once after celebrating my release with friends, I drank far too much diet pepsi instead of water and caused a pain in my kidneys. Yes, I have virtually given up alcohol until further along the recovery trail.

The one thing that has concerned me has been the lack of after care and physiotherapy. After making such a surprising, speedy recovery, I was pretty much left to fend for myself. I have always pushed myself in everything I do to achieve excellence and this was my downfall a few days ago. After reading advice on websites, I thought it best to get in the gym and build myself up. However, rowing 1500 metres, cycling 4.5 km and swimming 1000 metres was a little too much and has set my recovery back a little. It is still hard for me to accept this affliction and the limitations I must impose on myself. My balance has suffered a little, although at this present time, I believe this to be due to congestion in the right side of my face and I feel all bunged up. However, I know now that I must take each step a little at a time. I love my job and wanted to get back to work, but know I must wait. My company have been excellent. Prodrive Motorsport has their own fitness and well-being guru to help with the racing drivers and they have offered me his services. He has experience working with Guillian Barre and other spinal conditions, so I know I am in good hands.

I know it may be many years, if ever, until I recover, but I know that the love of my family and friends, the support of all the health workers, patients and the understanding of my work colleagues will help push me as far as I can go. They have all done so much; much more than I could ever have expected, and for this reason, I am forever in their debt.

There is one more person who is vital in making as full a recovery from this as possible and this is myself. All of you that have been here and for all those who will be here, always believe in yourself, never say if and but, accept this condition for what it is, but never ever give up hope. The human mind and body are incredible instruments that we will never fully understand. They are more powerful than we can comprehend. By having belief in this and by believing in yourself, you can make things better. Even if you are not able to improve physically, at least by coming to terms with things, you can improve your own quality of life and the quality of life of those around you.