When it’s gone, it’s gone

Since the weekend, I had been heading towards Wednesday with a clear plan for the day, a plan that was to start being put into action at 11 am. Adam knew all about it, but even though he doesn’t have the slightest reason for it, his memory is often almost as bad as mine. He came home for his lunch as usual at 12:20 and said nothing about it at all. So my error wasn’t touched upon and I carried on totally oblivious. In fact, there had been one huge reminder earlier in the day when the postman arrived bearing a parcel for me. Adam had ordered a new pack of Psyllium for me, in error, as I had enough to make at least 3 more batches of pancakes. Adam had even opened the parcel for me, so he too had received the same reminder, but even that didn’t remind either of us of the fact that I was supposed to be making the first batch of them from my chair. I didn’t actually remember at all about them until the time came that I should have been removing my daily one to defrosted, then I remembered there weren’t any left. How bad does two peoples memories have to be, to go through all that and still forget? So there I was an hour and a half behind on what I already knew was going to be a tough exercise to carry out. An hour and a half in which it should have been sitting quietly expanding as the yeast grew.

The parcel wasn’t the only thing to arrive in the post yesterday, I also received a letter from the hospital. I am to attend the dermatology department in four weeks time. It is actually the second appointment they have sent out to me, we had to change the first one which was for two weeks time as it was set for the late afternoon. We had to change it due to our knowledge of the NHS transport system. The original one was for 3:45 pm, we wouldn’t have been home until late evening at the earliest, making it a very long day for me. We have been unlucky enough in the past to have been not returned home until after 8 pm following a slightly earlier appointment than that. But worst case scenario, I might have had to spend the night, something the internal transport organiser warned us has happened in the recent past. The effect of a day like that is unbelievable for people with conditions like mine. Even the last one was still showing its impact several days later and with my health on the wain, I am not going to do anything that will upset it more than I have to. The new appointment may be further away, but at least I will be home that day. To me, though, this just shows how bad the entire system has become. My doctor, and we, are reasonably sure that the mole isn’t something to worry about, but if it turns out to be malignant, the outcome thanks to their system, well I don’t even want to go there.

I suppose that it is something that all of us who are ill have to learn to live with, but I actually wish I could turn the clock back for one reason and one reason only. From about 4 months after I became housebound, I cut all contact with the NHS. I had woken up to the ultimate truth, that they couldn’t do a single thing for me. I had had enough of being sent here there and everywhere for nothing. Test, examinations and wasteful conversations, all without anything other than the tiniest change, that usually changed nothing, drove me to just call a halt to it all. For 4 nearly 5 glorious years, I never saw a single doctor. I spoke occasionally to my GP, to tweak my meds, but other than that, I kept them all away from me. I knew without a doubt that my health was still slowly moving downwards, but it was livable. If I could turn the clock back, knowing what I do now, I wouldn’t have gone to the hospital when I first did regarding my breathing and intestinal issues. In fact, I really don’t know what it was that made me go when I did. At the time, little happened other than a lot of tests and the diagnosis of COPD, plus a couple of new meds. In all honesty, I probably could have waited until this year, as the two visits I have had this year were the ones that started to bring solutions. It has been my experience that once doctors get hold of you, they don’t let go and normally just waste your time and theirs in the main. If there is something that I long for now more than anything else, is the return of that peace. Just now, my life feels so full of medical people, that it almost like they are hiding in the shadows of my vision just waiting to jump out and say hello. Which is probably why I have chosen not to mention to any of them a new symptom that has appeared.

Actually, it’s not totally new, more an advancement of one. I know for a fact that I have mentioned at least once that I have lost all feeling in the center of my face from time to time. I can’t put a number on how many times I have felt it, I just know it has been happening on and off for a couple of years. At first it was just numbness and tingling. It filled a very clear triangle from midway down my nose, out to about a centimeter below and wider than the edges of my mouth. Over time, the numbness stretched into totally nothing, as though they had been cut free of me and there was a gaping hole in their place. Whichever version it was, it never lasted more than maybe 20 minutes and always returned to normal afterwards. Like so many sensations that my PRMS can create, it was annoying and occasionally a touch distressing, but it wasn’t really doing me any harm. About two months ago, I found myself occasionally being certain that I was dribbling from the right-hand side of my mouth, but when I checked it was perfectly dry. It would hang around for a while then like always vanish. For about the same length of time, the numbness and tingling was also more frequent, but I thought little of it, in the bigger picture of life, it was unimportant. Last week, suddenly I was having one version of sensation or another several times a day, it was clear rise and was the first time that I started to feel the same sensation starting to spread outside of the triangle.

On Sunday night, I woke up just before midnight, I had a headache from hell again and a high pitched squeal that filled my head, not like tinnitus which I have had for years, this filled my head, not my ears. I felt as though I had some kind of helmet on that was causing an even pressure over my entire head and yes, the entire triangle was gone, there was nothing but the hole. I was feeling terrible and I was reasonably sure that once again, my oxygen levels were low, but I had left my meter in the living room, so I couldn’t check. Oddly, for most people, but not for me, I was more worried about my missing face, than the possible fact I was missing oxygen from my body. This time, it had gone further, it wasn’t just the surface of my skin, but it went on inside my outer face, as though a large area had been gouged out. I got up with some difficulty and the steering of my wheelchair was so bad that the clattering brought Adam out of the living room to see if I was OK. I told him I wasn’t feeling right, but all I wanted was a cigarette and to sit for a while in the dark of the kitchen. Once my face felt more like my own, I went back to bed and thought little more of it. That was until the next day. The sensation as though I were dribbling is now permanent, it hasn’t gone at all since, and other things have slowly been joining in and spreading.

This morning, I woke to find that almost my entire right side of my face is now mildly numb like it is coming out of a local anesthetic. My eye itself and the bridge of my nose haven’t joined in yet, but it is clearly there right up to my cheekbone and around the outer edge of my eye, temple and a third of the way over my brow. It has also now left just my face, it’s right out to my ear and had gone below my jaw line and now goes under my chin and into the top of my neck. For the first time since Monday night, I am also experiencing numbness inside my mouth and around my gums, just again on the right. Clearly something major is happening to the nerves in my face, but I can’t think of a single reason why I should mention it to my Doctor. I know, just as when I lost my left hand, there is nothing they can do about it, but there is still this feeling that I should tell them. I guess, there is still this little part of me that hopes they will actually be of use in a crisis, despite it never happening before. There is like for so many other things in my life, nothing anyone can do other than wait and see what happens next. If I am lucky, it will settle down and return to normal, if not it will continue until it reaches its final planned result.

Please read my blog from 2 years ago today – 24/09/2013 – Chronic illness break down

I keep waking with terrible pain in my left heel, I know that that sounds really minor and stupid on the scale of things I live with, but it’s something I don’t totally understand. The pain can vary as to which……

Adjusting but for what result

I’m finding it hard to get my brain to accept that this is August, I know I have said it before but time is streaming past me, faster than I ever remember. Age on it’s own seems to speed thing up, but mind you my days are so short that that isn’t so surprising I guess. I hadn’t really put any thought into that before but when your day is reduced to half, it only makes sense that half the month will be missing as well. My need to sleep has clipped yet another half hour off the day, I seem to be only making it to 8:30 on my best days, it isn’t just the need to sleep that is shortening my days, but I am finding sitting on the settee more and more uncomfortable. Last night like many others found me propped by cushions and unable to really breath, my breaths have become shallow and concentrated in the upper section of my lungs, that way allowing my diaphragm to not move in the process. It is a growing pain these days and sitting there the lower section of my lungs feel like they are made of stone, but painful stone. If I sit back I breath in difficulty but relieve the lower pain somewhat, I have to then lean forward again as I can breath with far more ease, then the pain increases as I am crunching my ribs into my diaphragm. I eventually get to the point where I have had enough and I head to bed where I can lie down with a bit more comfort, but more than that I go to sleep and I am free of it all.

To have gone from someone who slept around 5 to 6 hrs a night to actually only really actually being able to stay awake that length of time, is a really odd and difficult thing to get my head around. The path of my illness has totally turned my life upside down, I lost so much so quickly from the things I loved to do the most. When you are an active person, the adjustment into a life of doing almost nothing may sound impossible to many. I myself would never have believed that I could be happy living with in my home unable to do anything physically productive. I know that this is a form of being productive and I still recommend writing to everyone, but I was never one to sit doing nothing, I couldn’t even sit and watch TV, I had to be doing something physical as well. One of the biggest things I have learned over the years is just how adaptive we humans are, I guarantee that anyone reading this who has full health right now, would if the need occurred be able to adapt. It is almost as thought we can reprogram ourselves to where we are and the life we need to deal with, if we couldn’t none of us would survive having children, bringing them up and then them leaving. Adam frequently says to me that he just doesn’t understand how I live with the just the pain far less everything else. I can’t answer that for him anymore than I can for anyone else, but it isn’t something you do consciously, I never drew up a huge plan or made decisions about how my life would be, it just happens and you just do it. It isn’t positivity or strength, or any of the other things people anoint me with, it is simply just going on from one minute to the next and from there on to the next day, the next month and the next year.

Then suddenly it changes, suddenly there is a point reached in your illness when you do have to start planning and strangely it isn’t for life it is for death. I haven’t spent so much time ever working out how to live as I had recently spent on how to die. Suddenly the illness I knew I had, that causes me pain, makes me sleep and that I had adapted to, has changed and it is ruling and controlling more and more of my life. It is no longer just there, it is here all the time, with no rest times and no space. I have entered the point where I don’t have to read my diagnosis and double check it any longer, my collection of chronic conditions are no longer just there, they are here, very alive and active in there own rights. Up to this point I often found myself feeling as though I was a fraud, as I still had times when I didn’t feel or wasn’t aware of being ill. I was so used to the constant level of all my symptoms that they had become normal, just the way life was, with good days and bad days, but still I felt stable and in control, all that has suddenly gone. There is no longer any rest and my life is changing at a speed that leaves me with no doubt about validating my conditions, they exist on a daily bases.

I don’t know how well I am explaining this as all I know is that in the last few months everything seems to be different. I am still happy and I still able to cope, but I feel that my control and my own understanding of what is happening to me has clearly changed. I know it started around 6 months ago and from then onward everything is racing around me, there is never enough time, for me to even catchup with my own thoughts and feelings. The only two constants have been my contentment within the muddle I call life and the fact that Adam is always there, regardless what is happening to me. I suppose this is more how I thought things would be when I was diagnosed with a progressive condition, that my health would be out of control not a steady downward slope but there would be steep sections to deal with, just like I am now.