Transverse Myelitis Two

January 13 2009

It's been nine months since I was admitted into hospital and five months since we came back from Hilton Head, much has changed some for the good and some for the bad.

I seemed to make such a great improvement in the three weeks we were in Hilton Head. At the end of July I had started to get some movement in my left leg (move a toe, move the knee cap) and by the time I had spent three weeks lying out in the pool I could comfortable get in and out of my wheelchair to the floor, clearly my stomach muscles were recovering. It felt as if I was on the way to making a full recovery, just time. The wonderful thing of being in the house at Hilton Head was the ability to have a shower. Everything was on the ground floor and I was able to put my shower chair in the shower and move from one wheel chair to the other and have a blissful wash. Back home I was once more constrained to the main floor where we have no shower. However the weather was nice and the boys would wheel me around the house down to the back where I could access the swimming pool and continued to swim or rather wallow and do my exercises in the water. Getting back up from the pool as we are on a steep hill was always much more challenging, really needed two to push the wheelchair uphill over the lawn.

As we moved into September I was still confined to my study on the main floor were I had a double bed and to the small cloakroom served as my bathroom. At therapy I was making major progress and was able to stand in the parallel bars. One Saturday I decided to try and get upstairs by moving backwards on my butt! and managed to clambered up the stairway on my bottom one step at a time. Once I reached the landing I crawled by pulling myself along the wooden floor into of bathroom and actually into the bath! My goodness I could have a bath! And I did. From then it became a daily excise and I also started to sleep in my own bed for the first time, it was wonderful.

Now that I was back upstairs I set a new routine upstairs at seven, toilet, bath then bed. This might seem simple but for me during that period it was a 2 hour ordeal. I had no recovery in the ordeal of bowel and bladder and still need to cath every 4-6 hours (cathing is inserting an eighteen red rubber tube to extract urine). But an ordeal that seems so much better in the privacy of my own bathroom rather than in family cloakroom. Plus the depth of relaxation of a deep bath was so pleasurable in a life devoid of pleasure.

It was mid October that I walked for the first time. It was our first bowling travel league outing with the kids. I run a monthly bowling league (or at least I did last year) where 20 kids from our weekly league compete against other bowling Lanes. This first match was away at the Park Lanes in Charlotte North Carolina where we arrived at 1230 but it was soon clear by the lack of handicapped car parking spaces and the age of the building I was not going to get in with my wheelchair. Suzanne parked the car next to the front door, the only option was to try and walk in. Sure at rehab I had walked down the parallel bars and my transfers from my wheelchair were greatly aided by the small movement that was returning to my legs. But if I managed to get into the bowling alley this would be my first real attempt at walking. I only had to climb two stairs and walk about a dozen strides to the nearest table but with Suzanne's shoulder it was accomplished. I had walked or as I like to describe it 'wobbled".

Therefore six months after being admitted to hospital I was now sleeping in my own bed, having the bath daily which now that I could stand changed to a shower and was able to move slowly around the house. It seemed as if my tribulations were over. I even stopped using my show chair over the toilet and celebrated by selling it on ebay!

I was sure it was now just a question of time, effort and all would be well. As October changed to November the pain started! not the vicious nerve pain that lasted 30 second when I had first come home but constant low grade pain - everywhere. In the legs it was like intense numbness while at the same time tight rubber bands compressed me. No pain medication seems to help. Doctors say nothing, I watched a youTube video of a guy who had suffered this pain for 20 years! the prognosis is a third recover, a third recover somewhat and a third don’t recover. I know I am in the third that recover somewhat and hope it does not stop here.

As January rolls into February I am trying to work somewhat. I can sit for a few hours but normally find comfort in a day bed. Very rarely wear anything other than underpants, as the touch of trousers is very aggressive pain. It is important to have the temperature just right as cold generates pain. It is odd when the dog lies across my legs and not to be able to feel anything, but an ache.