Grief goes on forever

I woke yesterday after my nap with a sudden realisation that it was cold. I had noticed nothing earlier in the day, but as I put my pyjamas back on I couldn’t help but notice the material was cold, colder than I have felt it for months. I was pleased when just 20 minutes later Adam went and added a layer of clothes, he normally doesn’t notice the changes in temperature I do, so for him to be covering up, it had to dropping quickly. This morning it has fallen again, I know that we were just lucky last month with the weather but such sudden and clear changes is maddening, I suppose we are on the countdown to putting the heating on but it won’t be this month. I usually give in mid-November and then it is only once I am putting the fire on daily for more than hour, after last year’s increase in our bills, I am going to have to tighten up on using more clothes and covers until I really can’t take it any longer. I always find it so strange that if asked I would say that Winter is my favourite time of year, I love the dark evenings, the snow, dark skies and even the rain. I don’t even mind the wind as long as it’s not blowing me off my feet, but it can be as strong as it likes when I am indoors just watching, especially now as I don’t have to somehow do my hair so that it lasts the journey to work. I even love the freezing temperatures outside, there is only one thing I don’t like and that is having a cold house, if only money wasn’t an issue, Winter would be perfect!

Living with heightened or in some cases dead nerves cause problems with all weather conditions. I have always understood how PRMS can kill a nerve or create sensations that shouldn’t be there, but how on earth does an illness that destroys manage to heighten sensations? I noticed it first when I was having my tattoos done, for years my ability to lie there and let them work was changeable, some days I could lie there for hours, others I wouldn’t manage even one hour. My last visit wasn’t that long before or possibly even around the time they think I changed from MS to PRMS, I would normally have been able to sit through more than most people could, possibly we now know the reason for that, but when I went there the last time it was pure agony within minutes, totally unlike me. I was the person that always had to take off my shirt while some guy was making a fuss or had passed out to show them how extensive my tattoos were. The tattooists always asked to see how it was healing, or some other reason in front of the wimpier ones and I knew why and was perfectly happy to participate, it was wonderful to just see their already green faces turning pure white. I still have area’s that at times don’t even really like being touched by my clothing, but try as I might, I can’t understand the process. The only thing that I can think of is that it’s probably at the point not far before the damage has reached the point of no return and what is left is thrown into overdrive, but that could be totally wrong. For me though it has meant that I have a three-quarters complete back piece as I never managed again to take the pain, although recently I have wondered if I might manage it now that I have the Morphine boosters, but I don’t have the money nor do I think that it is an acceptable use of my drugs, but you can’t help just having those odd thoughts.

I mentioned a couple of weeks ago that I had been growing my nails and that I had also found them extremely useful for testing the level of sensations that I could feel in different parts of my body. Well, I seem to have fallen into a new and constant habit, one of those habits that you aren’t aware you are doing until either someone points it out or you catch yourself doing it. At any occasion that I am doing nothing, just sitting still say watching TV or trying to remember what the next word it was that I was going to write, I immediately start sticking my nails into some other part of my hand, or start sliding my thumbnails, in a sawing action on my index fingers. Even when I am lying in bed trying to go to sleep, I have caught myself testing the sharpest points on my other fingers and having to make a conscious effort to lie still and not move my hands at all. I can’t believe that in such a short time something as simple as growing my nails has produced such an annoying habit, but I just don’t seem to be able to stop myself. I don’t know if it is just a stupid habit, or if it I have just become obsessed with making sure I can still feel what I should be feeling, either way, I just hope that I grow out of it as they grow.

It is one of those things that seems to go with having a condition of any sort I believe, you do become obsessed about checking over and over that it is still there or that it’s not any worse. I know now that I have been ill over 30 years, seriously for over 13 of them, but somewhere deep inside of me, I still have this silly hope that I will wake up one day and find I am better, or getting so. It doesn’t matter how many things worsen or how much it progresses in one area or another, there is still that silly little bit of hope that just won’t accept it. I think it has all been made harder as I went from relapse remitting to progressive remitting, as I know what it is like to feel like you are dying and then just a few days or weeks later you feel like yourself again. Even though that hasn’t now happened for years, that bit of hope waits there checking again and again just in case it does. I know it is perfectly normal and that everyone feels that way, but sometimes I wish it would just go away and let me get on with things just the way they are. I know that I have said it several times before but adjusting doesn’t happen overnight if it happens at all. What I mean by that is that ever change that happens, even the smallest take a fresh adjustment, so suddenly finding that you don’t have any feeling in your left cheekbone, although, to anyone else it sounds like nothing of importance, it still has to be adjusted to. Learning not to beat yourself up about it is another story.

For those still waiting for me to tell you the COPD website is up and running, well I am checking my email constantly but to date nothing, but as it is now October, hopefully, the wait will be over soon.


Please read my blog from 2 years ago today – 5/10/12 – Financial Frosting

I am on the verge of turning on the central heating, this is the third morning in a row that I have had to put the fire on in the living room as the house is cold. I try not to put the heating on as like most people I don’t want high bills until I have no choice, with no work the need to keep the bills down grows daily. I know Adam would probably never put the heating on as like most men…..


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