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……

2 thoughts on “When it’s gone, it’s gone



  2. Disease fatigue is real, and I respect your right to choose or refuse care. I don’t know what to wish for you, given the quality of your life, so I will simply thank you for the grace of sharing your situation with us, your readers.

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s