An Impossible Life

I found another bruise last night, I had been in pain on my left side for a few hours and when I went to the loo before getting my meds I checked it and yes there was a new bruise. I am still holding to the 8pm slot for my meds and as the BBC normally show a news bulletin at 8 I am trying to lock my trip to the kitchen at that point. I have noticed over the last few days that taking my meds later actually means that I am on my feet more often in the evening. It used to be a case of taking my meds at 7 and I then sat there on the settee until bed time, Adam would fetch my one glass of coke after I had finished my gin and tonic, so standing was required. But now I fill up my coke at 6:30, fetch a coke at 7:30 and then my meds at eight, two extra trips to the kitchen, two more occasions that I am using precious energy. On their own I don’t think it is enough to be the reason that I am struggling to stay awake until nine, so I started looking at what I was doing last week during the day. Despite Adam being here, or actually because he was here, I had been moving around a lot more, silly little trips to talk about things, to hand over TV controls all sorts of odd little things, but that all adds up. Energy saving is just so important and I proved it yet again yesterday, I returned to my normal routine, only moving 4 times between sitting down here at 7:30am and Adam coming home at 6pm. Last night I was tired, I admit that as I know it takes days to recover fully, plus I had to go on a house search as Adam had hidden the tape measure I needed, instead of putting it back where it lives, but I was only truly struggling at just after eight and although I wanted to go to bed, Adam had just joined me after clean sheeting the bed and sorting a few things around the house. I am going to have to micro manage my energy for a few days and then look again at the effect of changing the time of my meds, as I now think it may well just be I have been doing too much, without even realising it. Energy is a very precious thing and has to be used wisely.

I feel a total mess today, I really should have had my shower yesterday, but our fridge freezer is on it dying legs and before it gives up totally, I had to buy a new one. We discovered a few weeks ago that the there was cold air, almost like a draft coming from a couple of spots around the seal and instead of being frost free, it was icing up badly, to the point that every couple of days, Adam had to chip free the bottom draw. It is points like this when you have to find the money to pay for big items that need replacing that you feel not having a wage, it is amazing how quickly you adjust to living on a fraction of the income you once had. I still count my blessings that I was made redundant as that allowed me to hold on to a buffer, less than what the government allows you to have and still claim benefits, but it has been chipped at to the point that I had to cut my smoking just so that I could start building it back up again. I had this idea that I was going to get the main settee fixed up so that it would take us through many future years, then Adam announced he was off to college and needs a new laptop and now the fridge has taken a chunk, it just proves life is still the same, it cost you all the time. I spent 2 hours yesterday flicking around site after site on the trail of the best deal and someone who would deliver on a set day, so we could have everything sorted, cleaned and ready to go, customer service when the customer want’s it, doesn’t seem to count for much.

Strangely I think companies are missing a trick, in a world where we have an ageing customer base, there is a need for a delivery service that takes the work out of sorting things in preparation of a new large item being delivered. Whether it is a fridge, cooker, bed or settee, there are always going to be furniture items in the way, that need to be moved and repositioned afterwards. At this moment if Adam wasn’t here, I wouldn’t be able to buy a new fridge, not because of the money, but because I wouldn’t be able to move all the breakables that are in the way. Most companies will take away the old item, but every company ask you to have everything ready before they arrive, what if you can’t? Small situations like this appear, you don’t put any thought into them until it is a case of, “what do I do now?”, just like getting up off the floor when you fall over, there just doesn’t seem to me to be an answer to them at all. I am sure if all of us who are housebound around the world sat and thought about it, we could actually come up with a huge list of situations where being on your own and disabled, makes life impossible, but the solutions or help needed just aren’t there, without spending money we just don’t have.

Read my blog from 2 years ago today – 11/08/12 – Chronic loneliness 

There is one thing I don’t think I have really talked about that is something I think anyone with a chronic illness will be able to relate to. It the strange feeling of loneliness when it comes to my illness. I don’t mean I am lacking love and support, this is a different loneliness one that at times separates……

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