Well here it is, Monday, the day I have to decide just what I am going to do, rejoin the world fully or stay part-time a little longer. I have actually more or less made my mind up to rejoin, but it isn’t as instant as anyone might think as I work on the day ahead when it comes to the blanket everyone tweets, so the work I do today won’t show up until tomorrow, plus I have made a tweak that should keep the work levels down a bit going forward, that is often the best thing to come out of taking a break, you become aware of a different working method, one you didn’t think of because you were too busy doing thing the long way. So yes I am back and yes I am going to keep a very close eye on just how I am feeling and should I get the slightest sign of it all going wrong again, I WILL STOP! promise! (Does it count if you have your fingers crossed behind your back)
I have to say that I did wake actually feeling a lot more like myself this morning, yesterday was another rest day and I played several hours of silly games while trying to work out just what is happening to my mouth. I have had area’s of skin falling off from the right side of the roof of my mouth for the last couple of months, not due to burns as I don’t exactly have any hot food or drinks these days, I have just returned to my porridge as the drop in the house temperature reminded me just how nice it is when you are both cold and trying to wake up. Trust me that feeling with your tongue that there is skin hanging loose, without any blistering or any other possible reason, is more than odd, but it happened again and again. About a month ago, suddenly instead of the skin just peeling and then being totally unaware of it by the next day, I started getting scabs forming over the raw areas, odd as I don’t remember ever having a scab on the inside of my mouth. I started using our Corsodyl mouthwash twice a day, something the dental hospital started me using when they had to dig a tooth out of my jaw a few years ago, so I know it is a good one, rather than one that actually removes the inside of your mouth. Nothing changed, then a couple of weeks ago the area furthest back in my mouth that was raw, instead of scabbing, started to swell up and little lumps appeared, each kept forming and dropping its scabs when I ate. When I woke on Friday the first thing I was aware of was that the same area at the back of my mouth was so swollen that I could feel it resting on my tongue. Right through Friday and Saturday, every time I went into the bathroom, I used the mouthwash, I hoped that keeping it as clean as possible it might just help. I don’t honestly know if it did, but it did go down in size and the largest raw area scabbed over and is still covered. I have ruled out ulcers, or Canker firstly because they are not painful in any way, even when touched, yes when they are raw they sting a bit, but that is it and secondly as I already said they don’t blister, or feel or look pus filled. So right now I have three areas, one raw, one scabbed and one swollen and lumpy but less swollen than it was and all without the slightest clue what on earth is going on. On the good side, all three of them are in a better condition than they have been for weeks, my regime of mouthwash city seems to be making a difference. What is it with my body that it has to keep coming up with things that don’t make any sense? Not only do I not know the cause but the fact that I am managing to form scabs inside my mouth has me far more confused. I thought it was impossible for that to happen, but right now I have one largish one, well to the touch of my tongue large, plus 4 or 5 pinprick sized ones, that have been there for over 18 hours and feels solidly in place for now.
I honestly would really love to have just one day when I could go from the time I woke to bedtime that night, so I’m not even being greedy, just my normal waking hours, where I wasn’t racked by pain, or stupid sensation, or mad events like my mouth, just one day of feeling normal. Mind you if I did I would probably start to worry about that as I don’t think I actually remember any longer what it is like to problem free. I actually think that people like me who have lived for many years with an ongoing illness that basically no one believed was there until eventually it was pinned down by the doctors, probably notice things that no one else ever does, simply because we have learned to listen to our bodies. I am sure that I notice things that you probably also have happening to you, but you don’t notice them at all, because you’re not looking for them, or you brush them off as just one of those things. I have learned to notice everything from the itch in the mid right upper quadrant of my back, to the tingling that is in my little toe on my left foot, both there right now, so slight but despite the fact that I also have two Hugs gripping my lungs as well, I still notice them all. I can’t switch it off any longer because it used to be really important to notice them, I had to know everything my body did, just in case it was the clue I needed to know what was happening. I so wish I could shut it all off, but it would be like me trying to stop breathing, it’s now part of me. If I got my wish of a day of normality, well I either wouldn’t notice as I would still be scanning the unimportant, or I would be driving myself mad trying to work out why it all stopped.
Please read my blog from 2 years ago today – 25/08/12 – Strange understandings
My Pressure socks arrived at lunch time yesterday, which means that I have started the test to see if I can reduce further the pain in my legs. I have now for the past two days been ensuring that I take my blow up cushion with me so that I never sit on a normal chair of settee without it. This does seem to be making a small difference……
Dear sweet enduring Pamela how I wish I could give you that one day many days of feeling no pain. I admire you’re sunshine outlook so much while you live in such a painful world. I live with chronic illness yet no where near yours. I’m sending you my best gentle hug and I thank you so much for being you and enduring and sharing! Melissa Jacobs @deathrep
You are the one person I know that can make lemonade from prunes.