This is the third day of Summer temperatures this year, and the third day of feeling sick and increasingly tired. Yesterday, I was on a high having received the long awaited news from Teressa, it carried me through until mid afternoon when I was hit like a brick by exhaustion. We were lucky last year here in Glasgow and didn’t really have a Summer at all. This, though, I know is too early to last but if it is a sign of what is to follow, I’m not looking forwards to the next few months. Even after 30 years of being ill with PRMS, I have never understood why the summer heat should knock me for six, in the winter, I can produce the same temperature artificially and feel fine. Living in Scotland means we don’t really ever suffer from humidity so that one is ruled out. It’s another one of those mysteries of my life I guess. When I think about it, being slapped flat by the summer heat was one of the first symptoms I really remember. I can remember when we lived in Plymouth, I spent almost every summer sat on the floor in the kitchen. It was an old fashioned house and had thick quarry tiles on the floor, no matter what the outside temperature, they were always cold. I was heavily pregnant when we moved there in July, one of the hottest months I ever remember. I blamed my pregnancy that year, but the same thing happened every summer. I spent it sat on the kitchen floor, sometimes lying on it.
I don’t think there is a single person alive, who has MS, who doesn’t face the same problem every year. I have always been lucky, somehow, the people who I have spent my life with, have all, like me, not really been interested in going abroad on holidays and so on. I have to admit that I feel truly sorry for those who do have partners who insist on heading off somewhere hot every year. The conflict that it must cause is phenomenal, especially if they have children. I can imagine the mental trauma of not wanting to be a killjoy, but knowing that you will be really ill if you do go with them. It’s rare that I feel lucky, but that situation is one that makes me honestly feel that way. I know that my health has without a doubt, got in the way of many things that Adam would have loved to do, but couldn’t and wouldn’t, because of me but at least that isn’t one of them.
We actually last night talked very briefly about my feeling that he is being put under unnecessary pressure by all of it. I’m not too sure what even started it, he might have read my post, but it didn’t have that feeling of being in response to anything like that. I remember him saying that other people had often asked him how he manages to cope with such a stressful lifestyle. His response to them apparently was to say that he doesn’t see his life as stressful, it’s just his life. When I thought about it, that did make a lot of sense. I know when I am asked as to how I deal with being housebound, my answer is very much the same. The longer you live in any fashion, you become used to it, it is just the way it is, but that still doesn’t make it right, if there is an alternative. I can’t change being housebound, but I did do some searching online yesterday, about how I might be able to help remove some of that perceived stress of Adam’s shoulders. It appears that if I call the social services in to carry out an assessment of my needs, which is made up of a mix of medical and personal care, they will actually pay for the care required. So I could actually have someone come in to help me shower, dry and apply the creams I need, then dress me, all for free. I could even have someone here daily to cook me lunch, as I’m not really safe with cookers. They will either supply that care, or give us the cash, so we can choose the people we want,
On the surface, that all sounds great, but there is one huge problem that I really haven’t given enough thought too. Strangers unsettle me in every way you can imagine. Having someone here with me daily to sort out my lunch, would I know put Adams mind at ease that I am really OK, and not just saying I am over the phone. The flip side is, just thinking about that idea, is stressing me. I don’t deal well with people I don’t know, hence, Adam has to be with me, when I leave the house to go to the hospital. He even has to come in the ambulance with me, as that freaks me as well. I guess that what we need to do, is to arrange for an assessment, then talk all these things through with the person who is here. I am sure, that I won’t be the first person that lives with that issue, but before I do anything, I need to talk to Adam first. I guess much of what I want to do now, is far more about making ourselves know to all the different agencies who can help, find out what they can offer and how of course, how the financial side work. Once all that is done, well when the time comes that choice doesn’t come into it, we know where to turn.
From what I have read so far, unfortunately, Social Services are our first port of call. I have two brushes with them in the past, firstly when I was in my teens and in so-called care, if dumping me at aged 15 in the YWCA equates to care. The second time was about two years before I left my first husband, she is now his wife. No, she had nothing to do with us splitting on my side, but their story of not having been together before I left, never rang true, to anyone, especially when he moved her into our home before, I had even left. My dislike of her, though, comes down to the way she treated my daughter, yet another great example of social workers care, so I don’t have a great love of them. Having to deal with any of them again, doesn’t exactly fill me with joy. I guess that there are a lot of hurdles for me to cross along the way.
Please read my blog from 2 years ago today – 12/05/2014 – Take a duvet day
Sometimes it is easy to just get on with things to start your day secure in your daily timeline, knowing that once you reach that point or the one after, that you will be rewarded with food or a sleep, then there are other days. Those days we all know, when doing what you should just doesn’t sound like fun of any sort, or days when all you want is to be alone and hide from the world, not out of fear, but more out of a need to be solitary, to look inwards instead of out. I never used to understand the concept of “duvet days”, why would anyone want to just lie in bed, when there was so much that needed doing, so many tasks not completed and so many joys……