There was a reason behind my sudden decision in dying my hair this weekend, I have a hospital appointment on the 7th of September. When I had my COPD exacerbation my GP thought it was about time that I returned to see the consultant. So three months on from the actual time that I couldn’t stay awake because I was too ill; when I was permanently dripping in sweat from my fever and unable to break that fever; when I was unable to breath because my lungs were filled with water, that persisted in attempting to drown me when I coughed; when I was so clearly confused that I was unable to write or even talk at times, I am at last making going to see the consultant. Adam is going to phone this week to arrange the transport, so I thought it was about time that I started to prepare. I know it is two weeks away, but when you live with a totally unpredictable body, getting ready on any day that allows you within the proceeding month, is a good idea. I am at last starting to get used to that type of logic, as odd as it is, it is the only form that truly works. I know without a doubt that if I waited until the week before, my body would have come up with some form of hell that would have made it impossible. The result of having to go out with two inches of grey hair showing, would have been mortifying and don’t tell me people wouldn’t notice, they would.
Just like everything else that doesn’t fall into my normal activities, I paid the price for it that evening and on into the next day. I didn’t make things any better when I had to stick to a promise I made the weekend before. I stupidly last Saturday evening said to Adam that I had had an idea of suggesting that we had a pizza that night, but I hadn’t carried it through. The look on his face at having missed the possible culinary treat meant that I promised we would have one next weekend. So there I was tired, in pain and trapped. I know I could have explained and just said I wasn’t up to it, but a promise is a promise, so pizza it was. I’m not good with food in the evening, but I decided that as long as I kept it to nothing spicy, which is totally easy for me as I don’t believe that spice belongs anywhere near a pizza and that I continued my vegetarian theme of the last 8 months, I should be OK. I don’t know what it is about meat, which to be honest I have never really eaten a lot of, but recently, it has been like putting a nuclear explosion inside myself. The pain is unbelievable and unbearable. I honestly don’t think my choice of food did any harm, it was the quantity so late in the day. Even though I only had half if it and kept the rest for Sunday lunch, the pain was kicked off and took hours plus morphine to settle. Half a small pizza and I have to reach for morphine so that I could sleep, life really has landed on a different planet.
You would think that my experience from the day before would have stopped me from eating the rest the next day, well you might, I didn’t. I ate it with the same relish I did the day before and without the follow on pain. I ate it as a part of another one of my theories and this one I was reasonably sure was right. At night I sit somewhat crumpled on the settee, during the day I sit upright with good posture at my PC, there was the root of the pain the night before. I had sat there stuffing food into my crumpled body and it didn’t know how or where to put it. The useless mess otherwise called my intestine had quite simply gone into spasms fighting each other throughout. Some were trying to do the normal act of moving food through me, but they were coming up against the impossible locked down spasms ahead. I have been mildly aware of it for a while now, hence the fact that I don’t eat at night. I would far rather be sociable and sit beside Adam than sit at my desk and eat alone, even though we would only be ten feet apart. Don’t get me wrong, lunch wasn’t pain-free, but there was little comparison between the two. I was so chuffed at getting it right that when it was time to move to the settee to sit together and watch TV, I had totally forgotten about pizza at all. Bad mistake.
Half an hour after I sat on the settee, half or all of it, probably the all, were in various parts of me and were all determined to cause as much pain as they possibly could. If anyone out there had been wondering why I eat so little, well there is the answer, eating what anyone would call a reasonable amount of food, spins me into hell. My theory was shot through, even though I don’t have the slightest idea which pain belong to which meal, the result was the same. Portion control really is everything and going forward, will be observed far more closely. The worst of the pain lasted about 3 hours. I know I could have taken a Morphine booster, but I wanted to keep that until I went to bed, sleep is precious. I honestly didn’t know what to do with myself in the first hour. I switched positions, applied pressure, stood up, walked, sat on a hard chair, the settee and even the settee arm, none relieved anything, other than for a few seconds. As a Mum, I can say with total confidence it was like being in labour, without the gas and air or the pethidine. If it had had a blind midwife handy, I would have been screaming for both and a little more on top. When I did take my Morphine it was heaven. This morning it is nothing like as bad, but I am a very long way from comfortable, there are spikes of pain followed by discomfort, then pain again. I don’t know how many days of this I will have to go through, I am guessing probably several. Only time will tell, but I went to the loo three days ago and it’s normally once ever 8 to 12, depending on luck. My stomach kicking off like this always means that my chest goes just about as mad in an attempt to keep it company. Taking a second Morphine booster may not have seemed like a good idea on one hand, but it was necessary on the other. My gamble paid off as even when I took that second one just after 3 am, I passed by the vivid dreams without even noticing them, if they happened. I may have once again woken in the middle of the night by pain cutting my body into pieces, but once I was fully awake I couldn’t miss the fact that that headache was there again, along with the high pitched squeal in my head and the nausea, all of which are still with me this morning. It is going to be one of those days.
Adam cleaned my wheelchair for me yesterday and moved the unit in the kitchen doorway as far back as possible. I took a couple of runs at it while he was there and just as I thought it is a little easier, but it is really going to be a matter of practice. Once I get that correct speed of approach and angle, I will be fine. It honestly is all about learning these things, which Adam wasn’t that convinced about. I may have never driven a car, but Adam has and when I compared it to his beloved ability to park in small spaces, he got it. I am going to take the chair out later today or maybe tomorrow. I want to try all the different things I have thought about that might be issues and work out what can or can’t be done, bought or changed to make life easy. I think one of the hard bits is this settling my brain into the fact that my chair is once again going to be part of my life. I honestly thought that I wouldn’t feel this reluctance to just take it out of the cupboard and keep it out, but that isn’t going to happen yet. I know that I have to get things a perfect as possible before that day arrives, otherwise, I will find every excuse to put it back and leave it there. There is one big fear that I haven’t written about before and this is the big question of is my body up to this. I know until I try, that I can’t answer that, but I am worried that I am going to cause myself a lot of pain.
When I was using my chair full time at work, I wasn’t then getting any pain in my chest, and your chest muscles are pulled this way and that constantly. It is possible that I just won’t due to pain levels be able to get around, especially when my chest is in one of it’s constant spasm phases. Just the strain of pushing myself around could be enough to trigger spasms, I just don’t know. Back then it was magical to me as the center of my pain was in my legs. Unless you are pushing yourself to move at speed or to go up hills with too high an incline, the pull on my thighs is minimal. The pull on your arms and chest is astronomical. Luckily neither are an issue in the house, it will be far more about slow, steady and controlled. Despite all the planning and preparation in the world, chronic illness is the most unpredictable thing you will ever have to face. It is also a total expert when it comes to turning everything you think you know, that you believe you have worked out and every single thing you have ever learned, totally upside down.
Please read my blog from 2 years ago – 31/08/2013 – Everything is going wrong
Two Rooms Plus Utilities 