- Sun Nov 17, 2019 12:57 pm
I will keep everyone updated with oxygen experiment as soon as I get some more data
In the meantime time this is a post I put on Facebook.
As you know I’m in early stages of experimenting with oxygen
I was talking to my wife and she started to open up about living with someone that has OT The following are her thoughts and words she asked me to share them with you
LIVING WITH SOMEONE WITH O.T
With Michael currently testing oxygen therapy at home to see how it affects his OT we have spent a lot of time discussing his condition and, in turn, how that has affected me, his wife. We have been together 35 years so I have witnessed first-hand the onset and development of this weird and debilitating condition. When we met he was a strong, fit and healthy man – a man who did martial arts, played tennis, swam regularly and who was always the centre of gatherings entertaining people with his jokes for all occasions and never ending stories.
When he first began to struggle with the ‘weird’ feeling in his legs we were understandably confused about what was happening and no doctors we consulted could help us. One even suggested he was imagining the whole thing. In the beginning it was relatively easy to accommodate – he just sat down more. As time progressed it became clear that the problem was getting worse and finally in 2008 he was diagnosed by a neurologist here in Spain as having OT. Once it had a name we felt relieved but that was short lived when we realised there was no cure, only off label treatment and actually very little was known about OT.
Michael did try Neurontin for a period of time but the side effects for him were horrendous and the relief the tablets offered in terms of being able to stand for longer was minimal. By this stage to say OT ruled our lives would be an understatement. Everything had changed. Our home was now full of stools everywhere; we had redesigned our kitchen and one bathroom to make life easier for Michael. Everyday tasks like supermarket shopping were exhausting for both of us. For Michael, because if I stopped to look at something he would have to keep walking, and for me because I’d have to wait until he came past me again so I could show him something and ask him if he fancied that for dinner or not. Sometimes he didn’t have time to answer before he was off on another circuit and I’d have to wait until he got back to me again. Everything took far longer than ‘normal’ because he couldn’t stop. Some of you will be thinking I should have just shopped without him and, of course, that was an option and it would have been easier to just leave him at home but we want to share our life together so that means doing things together not separately.
OT does make me angry and sad. Of course I’m sad that Michael has to live with this horrible disorder every minute of every day but I’m sad for me too. And I’m angry with OT for impacting our lives in so many ways. I’m angry with OT for making me have to remember to keep out of his way every time we come in and out of places. If I get my timing or positioning wrong he bumps into me which he hates doing and I don’t enjoy much either. I’m angry that there are so many things he can’t now do. I’m angry that our life revolves around OT.
Things came to a head when we were in a local department store looking for a gift for some friends. We were in the china and glass department and my nerves were on edge as I tried to not only choose a gift but keep an eye on Michael as he stumbled about searching for a non-existent place to sit and becoming more and more panicky. I had visions of him wiping out whole displays of glassware with one stumble. We had to leave the store, gift not purchased. We had spoken about Michael using a wheelchair which he would not even consider. He was in total denial about the level of his disability. He was in denial about the impact it was having on not just his life but mine too. He was not ready to be seen as disabled. He’s a very proud man and he did not want to show any sign of weakness to anyone and, for him, being in a wheelchair would mean he was weak.
Of course I listened to all his objections about using a wheelchair and then ignored him and hired one. He was so angry with me – he refused to use it and told me that I would just look stupid pushing an empty wheelchair around. I told him I didn’t care what other people thought – if he didn’t want to use it I would just use it to put my shopping in BUT if he did want to use it, it was a chair for him to use. That’s all it was – a chair on wheels.
A few days later we returned to the department store and, sure enough, I was pushing an empty wheelchair around. Then I had an idea and suggested we have a look around the menswear department to see if there was anything Michael liked – he absolutely loves clothes shopping! It wasn’t long before he found a jacket he liked the look of and when he couldn’t stand long enough to check it out I gently suggested he sat in the ‘chair with wheels’. He gave me a look and then sat down. I then pushed him round so he could check out more things and he quickly realised that actually it made the whole experience more pleasant for him and for me. We then discussed how, if he were to start to use a wheelchair, maybe he could use it to his advantage and that’s exactly what happened. Travelling became easier – instead of it being a traumatic experience at an airport for example, it actually became a pleasant experience. We could shop together in the supermarket or anywhere. Life became less stressful.
Today has been an amazing day. Twelve hours of oxygen last night gave us six hours today with no tremor. We started the day with a slow dance together which filled us with joy. And then, guess where we went. Yep, we went back to the department store. Michael shopped in the menswear section and we met friends for lunch. We had the wheelchair with us, just in case, but most of the time it just had our shopping in it. Today I felt that, just for a few hours, I had my fit, strong husband back and no matter how many more hours or days we get like today I will be grateful.