I found myself with a racing brain last night, I lay there in bed desperate to go to sleep but totally unable, well at least that is how it felt. I don’t actually remember a night like it since I stopped working, I had this plan of something I could build that would help me with one aspect of what I do on twitter each day. I lay there mapping it all out in my head, just as I used to when I was building a complex program or spreadsheet and just as I when I was working, I couldn’t shut it up and it went on and on and on. I remember lying there from 9pm until when I looked at the clock to find it was 11:30, then I must have slept as I woke again at around 3 am, with only scattered sleep after that, but strangely I don’t seem to be that tired, so I can only guess that I slept more than I thought. The whole thing was a backlash from a mistake I had made earlier in the evening, I did exactly what I said I was never going to do again, I ate too much in the evening. I stupidly thought that it would be fine as we have a treat evening every Wednesday, last night our treat was crisps and dip, we shared a large bag of Doritos and a Marie rose sauce which work really well together, too well, but they didn’t work well with me. Within 20 minutes of finishing them down to the final flakes, the pain started, followed by area’s of my intestine being feeling as though they wanted to burst. When I lay down it got worse and I was just lying there knowing every centimeter of my insides that both the Doritos and the wind were passing through. The Morphine was keeping the worst of the pain at bay, yet I was totally able to feel where they were and the pressure they were causing along with in some spots a clear and strong pulsing of the veins around it. My diaphragm was also being pushed to its limit and I was once again trying to control my breathing. I knew that just lying there following it’s tracks wasn’t a great idea, so I started running anything through my mind that would block it and up popped the idea of a new spreadsheet, I would have been better obsessing about the Doritos.
Distraction can be a wonderful way of handling any form of discomfort or pain when it is low level, but it’s limited, I do find though that at night it is usually the answer, my mistake was to work on something that sparked my old life, one that I loved. I had made a conscious decision a long time ago that I had to put things like that behind me as I have little to no real use for it, but I can’t deny that it still fascinates me and the joy of building a program that in seconds can do what otherwise would have taken hours, well even though I built it, it still feels like some kind of magic. I know that is why I tried for such a long time to get another job, as there is no use in a creating anything that is of no use to anyone, just a clever gimmicky toy for me to play with occasionally. It wasn’t until last night though that I realised just how much I missed building my gizmo’s, it’s really odd the things that we miss.
I have been asked many times how I manage not to go stir crazy as I am now in my 8th year of being housebound, oddly it isn’t something I have actually really thought about the outside other than when I am asked to. I wish that I could give a clear and simple answer, something that would change the pain that so many seem to go through once the outside world is no longer open to them. Being housebound isn’t something I see as a problem, I see it as something I just have to accept, just as I had to accept that I have PRMS. Leaving the house causes my health to plummet so fast that to me it really isn’t worth even trying. I guess that I have adjusted to the facts of my situation, although I doubt I would have managed it if I didn’t have the internet. If you sit and think about the things that you actually leave your house for, they are really limited for most people. For me the last couple of years before I was housebound the only places I went were to work and to the hospital, in the final year I only went to the office two days a week and everything else was done from home. The whole process of getting dressed, going down the stairs and into a taxi, then spending a few hours surrounded by people totally exhausted me. If I am totally honest, I don’t know how I got through that final year, I don’t remember feeling well for a single second of it. Within the first few months of not going out my health improved dramatically, in many ways, when my hand died and I couldn’t use my wheelchair, I was relieved as I felt so much better when I didn’t go out. My weight went from just 7 stone, back up to my normal weight, of just over 10 stone in the first year and my pain levels fell as did the number of spasms, removing that stress wasn’t just a blessing it was a miracle. I haven’t left the house since then, other than to go to the hospital and my health dips for several days just because I left the house for a couple of hours, going out, just isn’t worth it.
I don’t have any conflict about not going out, it’s not only not worth it, there is nothing that I can’t bring to me in one way or another. The only thing that does get to me, is when I know that Adam is really saying that he would like me to be with him when he goes somewhere, now that does hurt, not for me, but because I feel I am letting him down. I know he will say when he reads this that that is just stupid, but it doesn’t stop me feeling it at times. I feel bad because I know that if I could leave the house, even in my wheelchair, that his life would be so much better. We would then be able to go on proper holiday, go out for meals, possibly the cinema, well maybe not the cinema as I hated that even when fit, but to do the normal couple things. That is when I feel bad, stir crazy no, but guilty because I am limiting his life because mine is by my health. What we do to our partners lives, is right up there in my list of things that I hate about chronic illness. It is one thing having your own life changed so dramatically and having to live a life that many people can’t even imagine, imposing that on another person, is incredibly hard to live with, especially when neither of you have a choice about it and neither of you have actually ever done anything to have caused it. I have never stopped Adam from doing anything over the now 10 years that my life has been limited due mainly to my energy levels and the stress of the outside world, which if not kept under control, make me really ill. 10 years where he has been out almost as little as I have outside him going to work, my social life has become his, all based here in our home where few come now, again because of the exhaustion that visitors bring to me. I know I am incredibly lucky in having a husband who hasn’t just accepted the way we have to live, but he still goes out of his way to be here for me for at least a few hours every day, as without him, I would have no human contact, without him, I probably would go stir crazy.
I suppose then that the real answer as to how I have adjusted is down to three major points, I had a gentle lead into it, a bit by bit process of being here more and more. Second, I have developed a new passion here online and that has replaced the old ones and thirdly, the most important one of all, Adam. I would recommend all three to anyone who faces becoming housebound, but I can’t, as Adam is mine, they will just have to find their own version.
Read my blog from 2 years ago today – 23/04/13 – Slow down not stop >
I often find I write not remembering that everyone doesn’t know me as a friend who visits my home, so when I wrote the other day about the possibility of some sort of alarm system, I omitted to say that moving around with a mobile in my pocket isn’t an option at all, well not unless I intend to spend my entire life 6 inches from the front window of my living room. There is something odd about living here which we didn’t discover until…..