Another drifty day, I guess all of last week has taken more out of me than I thought, I am still doing a good impression of a duck and talking, well it’s an effort. Adam had some more overtime last night and although I can rely on him to come home each evening and talk for about half an hour before the snores start. Last night he had put the remaining shopping away, then came through to the living room to take off his work shoes, and was still sat half way through the process when to my surprise I heard a snore, I think we had had about 10 words each and he was asleep. I have always thought of myself as being a person who goes to sleep easily but he just broke my record, I swear he took one shoe off, sat back and on the next breath, there was the snore. He dozed for about 20 minutes before joining in on life again. I admit that we don’t have huge amounts to talk about, well being sat here all day leaves a limited conversation range. As exhausting as interaction of any type is, I do really look forwards to our evenings together, even thought they can be as short as an hour or as much as 3 hours, they really are my high point of every day. I have been frequently asked if I would like more company at home, but it isn’t about company to me at all, I really wouldn’t want loads of visitors, but understandably time with my husband is incredibly important.
When the OT was here the other day I could tell by her expression that she didn’t like the responses I was giving to her questions, I wasn’t slotting into all her little boxes. Her suggestions that I should be in contact with all the different agencies she felt were important to my having a complete life, were greeted with my normal response of no thank you. From the diagnosis of my MS onwards, different people have put me in contact with different groups and charities, for me they just weren’t right. I know that many people need and embrace all they have to offer, but it just isn’t me and getting others to understand that is really hard. I have never really been what I would call a social person, the idea of attending groups and big social groups, to sit around and talk fills me with horror. I can’t explain it any better than to say it in that black and white fashion, and the worse my health is, the more against the idea of being taken out of my home to go to some group where I can’t do what I want. At home I have the freedom to lie down when my body tells me to, to eat or drink when and what I want. I have my home set up so I can manage, outside I need help all the time, and that is something I know would drive me mad, every single time I had to ask for it. I know that all these groups are set up to do good for those who need it, I may in their eyes need it, but they always seem to forget we are all different people and as such we want different things. Anyway the fact I don’t want their help should please them, it means they have more money to spend on those who want it.
I have to say there was one suggestion she came up with did really make me laugh, she suggested that I attended a falls clinic. At first I just couldn’t see what on earth a falls clinic was, I had this image of them teaching how to fall well, just as they would teach stunt actors. She reassured me that was totally wrong, they would assess me and see if they could supply equipment to ensure I don’t take so many tumbles. This seems to be one of the new changes to the NHS that I think is a great mistake, all these small clinics, separate from everything else. It used to be that you would see your doctor about medication to deal with pain, but no, you have to go to a pain clinic. A physio would supply you with walking frames or sticks, at the same time as sorting out cushions and beds or so on, but now they are in different groups, Rehab, falls, physio and OT, each dealing with one tiny bit. Each taking separate appointments, causing more stress, more hospital visits, upsetting my routine and making my health worse and all adding up to more cost. Sorry but where is the improvement to service there?
Last year I was forced to let them into my life again because I had a problem that I couldn’t fix, well here I am, a year on and nothing has been fixed or made better or even improved. To date all that has happened is that my health has got worse and I have no idea what I can possibly do to get the help I originally asked for. 12 months of putting me through tests, taking me here and there, Adam having to take time off work and what has changed? Not one single thing.