We were sitting on the verander yesterday and Tom said, “I’ve been home 4 months”. Has it been that long, or has it been so short? Everyone always asks if we are settled into a routine. That’s a tough one to answer as I don’t think we were ever in a routine even before Tom’s accident. Life just happens and we live it each day. One thing is a certainty…… I have no idea what tomorrow will bring.
Tom’s pressure sore is still a problem. A really big problem. It’s now about 8 weeks since it reared its ugly red mark which has now turned into a superficial but persistant wound. Because of its position – on his bum – Tom can’t spend much time sitting in his chair. This is obviously really difficult for him and trying to work on his computer lying down is not at all ideal. It also means trips out, have to be planned in advance. We are trying different therapies, Granuflex, trusty mercurochrome, sudocream, others have suggested prep shaving cream, bovril, honey – which he is now trying. Tom has purchased a Bioptron light which encourages rejuvenation of the cells. This has shown some slow but positive change.
Unfortunatley because of this pressure sore Tom has been unable to use his bike. It would cause too much friction with his legs moving to and fro. Anyway it’ll be the first thing to hook up when its disappeared. And so his daily exercises of passive moves carried out by his carer’s, Anna or Janet will continue. If these are not kept up he spasms so much and this causes alot of discomfort. The spasms refer up to his neck where he has feeling. These involutary spasms are quite frightening at first if you don’t understand them. So many people have jumped back in shock and said “Tom you moved, did you see that!” They are sometimes so severe it takes all of my strength to get his leg back to a bending position. Unfortunately it doesn’t mean anything for the future.
He has decided to look into purchasing a tilt table. He would be strapped onto a flat plinth that slowly, either manually or electrically, tilts him from 180 degrees to nearly 90 degrees. This would assist largely with his blood pressure issues, his bone density as he would now be bearing weight on his legs, he would be able to work on his computer in an upright position and hence get a different perspective! He could do this to a certain degree in his “standing wheelchair” but because of its design, the pressure sore is at risk.
Tom being a very keen reader misses reading books terribly. He’s just got something called a Kindle that has made a huge difference to this love of his. It’s like a small laptop but without the glare a computer gives. It’s used specifically for reading books, and with the help of a long stick with a rubber end to avoid slipping, from his mouth he is able to “turn the pages”. He can now do what he used to do and read stories to the girls at bed time. The Hobbit is going well!
We’ve each had our birthdays’, Tom’s in February, mine a few days ago. I spent the morning of mine in tears, uncontrollable tears. I think it must have been one of those FIRST’s people say we need to get through. But my dinner this last Friday night was spent with my family and friends and I laughed and laughed and laughed. So these emotions come and go, many times a day.
A routine is difficult when emotions rule.
