Still worth it

I really have turned into a delicate flower, right now I am sat here still aware of something that woke me at 6am, a pain on the point on my nose where it changes from bone to cartilage. I had woken the night before for no reason I could find and as I lay there awake the only thing I noticed was the light in the hall, it was the early hour, yet there it was light bouncing of the celling. I decided that it was probably the TV or Adam playing with his phone, clearly if I had worn my sleep mask neither would have woken me. So last night I went to sleep with my mask on, I have been wearing it during my daytime naps, but apart from my first night test run, I hadn’t bothered during the night, clearly that was a mistake, so on it went again. I woke this morning with intense pain on my nose, it was exactly where the mask outer seam was touching my nose and I do mean touching, not digging into or even tight on, just lying there it was causing me pain. I pulled it down a little lower and headed back to sleep, yet here I am 4 hours later and I can still feel it without even touching it, touch it and it’s painful.

I have spent the last 4 years with no change in what I wear, everything is loose and soft, but I had totally forgotten why I made the change. Most of my life I have worn really tight clothing, I preferred to know without the slightest doubt where my clothes were, I normally even wore what most would call corsetry, but without the lacing, just best and most ridged modern version I could buy, not only were they comfortable, they actually really do make all cloths look better. To me the fact they were comfortable was the most important factor, but when the outfit didn’t allow, well I added tight elasticated belts and so on over my clothing. There was something comforting about being constricted like that and I was not just physically comfortable, but mentally to as I knew I looked good and that gives you confidence. I always changed me clothes when I came home and would wear an old fashioned long nightdress and velvet dressing gown, still mainly tightly fitted but softer. When I became housebound, I stopped getting dressed and just lived in my nightdresses, slowly I started finding the their tightness and their straps were cutting and causing constant pain, not just because I was gaining weight due to my immobility, as I had already bought larger sizes, but anything that was tight was causing me extreme pain, where ever it touched me. Reluctantly I changed and started wearing looser and looser nightwear, until now when what I wear isn’t just loose it is two sizes bigger than I need, just to be sure nothing can ever cut into me, regardless how I sit or lie. The material they are made of isn’t just soft, but has a large amount of stretch to it, so that even it getting caught under me can’t truly pull it tight. It isn’t just my clothing that caused me problems, even the duvet can cause pain in my feet as does the softest footwear I can find other than just socks. When your nerves are damaged, they miss read things, things that shouldn’t be a problem become huge issues and it appeared that nearly all my skin surfaces had become confused. The problem wasn’t on the inside of my body, well not to any depth, it feels as though just the surface centimetre or so causes all the trouble, anything pressing, even lightly can turn into pain, I know I have said in the past that I can’t even take my hands lying on me, or even touching my sides as I go to sleep, I have to ensure they are far enough away from me that they can’t just slip across the bed and touch me, as the pain just builds and increases stopping me from sleeping. It isn’t just my nose that is in pain, but also my right eye lid is causing me much bigger problems than my nose, as it is really reading things wrongly and keeps streaming with tears as though it is trying to rid itself of something that shouldn’t be there. There isn’t anything there and in fact it doesn’t even feel as though there is, it is only my eyelid that feel a little irritated, so when I go for my nap, well the mask will be loosened until I find a position and lightness of touch that my entire head will consent to.

It is so easy to throw your routine into a massed muddle even when you believe you are holding closely to all of it, but I did say believe. I don’t actually think I have managed to be in total routine since a last Saturday, all thanks to my determination to stay up and see the final of “Strictly Come Dancing”, it was such a basic mistake, one that I should have known no good would come out of, but I did it and from then on, things have been floating apart like snowflakes. Every day without really noticing it, I have let things slip, or had a longer sleep or a shorter one, consistently every day I have done something I shouldn’t, Christmas day being the worst, wrong food, wrong nap length and another late night. So having stood in the right spot and asked the mule to kick, why is it I am still surprised at just how rotten I feel today? I sealed my own fate yesterday by still eating the wrong things at the wrong time, then sitting here at my PC until 8pm playing a game, simply because there wasn’t anything on TV I wanted to watch and Adam was in the kitchen doing dishes, so I sat here playing a game unaware of the minutes ticking by, suddenly it was tablet time and I was still sat here, not relaxed or resting in anyway. I am really paying the price today for my entire week of miss behaviour, it does often feel that way, as though my PRMS is some kind of strict head teacher and right now I am in detention, as I dared to do what I wanted and I broke the rules. I knew there was going to be a price to pay but I didn’t expect to feel as terrible as I did yesterday or today, at least so far the vertigo has settled a little further, but the total fatigue, nausea and general feeling as though I should be in bed dying, just isn’t lifting. When I feel like this it is hard to eat the right things or at the right time, I have already turned my nose up a breakfast again, so just a few hours into my day and I am already breaking the rules, but I have little choice.

PRMS isn’t fun and it doesn’t like me having fun either, but at least I can still laugh at myself and smile at memories as I write, I know that sounds a little silly, but smiling when there is nothing to really smile about, does actually slowly make you feel that bit better.


Please read my blog from 2 years ago today – 28/12/12 – Sifting the smile inside

Last night I was so tired that I felt chilled to my core, not the kind of cold that comes from outside but from within. I put my electric blanket on as I got into bed in a vain hope, that the cold would lift, I don’t……

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