The Pain Game

I thought that I was well and truly done with the level of pain I have been experiencing for the past ten days. There has been no let up other than when I catch a break through falling asleep due to sheer exhaustion. It’s not a horrendous level of pain probably only a 6 or 7 out of 10 it is the fact that it is never-ending that is driving me to the brink.

My hips, knees and pelvis are all currently conspiring against me, each in competition with each other to see who can hurt me the most. When one eases off another goes in for the kill. I can’t actually remember ever having pain at this level for this amount of time. It’s a bone deep gnawing pain, not enough to make you cry out but enough to make you consider weeping if only you had the energy left.

I have racked my brain trying to work out what is behind this pain escalation. As my mobility is limited it’s not as if I have taken up hill walking or Zumba classes. I haven’t fallen or  done any Pilates (since the pain started) or sat in a way that would put stress on my joints. There hasn’t been a constant change in weather fronts (the weather plays a massive role in my pain intensity) or a  change in medication. There is nothing I can put my finger on that I can say “that did it”. Pain without a cause is frustrating, as how do you avoid it happening again? I don’t mind if I have done something that causes a few days of pain. I can live with that, it is when my body is punishing me for no apparent reason that I begin to despair. When will the pain end or as in my case when will the pain subside to a level that I am used to and I can cope with day in day out?

My vast quantities of pain medication are not working, which would normally be the case if I was suffering from nerve pain. This isn’t nerve pain as nerve pain has a completely different quality. Nerve pain or my nerve pain tends to be a burning, pins and needles pain. This is deep within my bones. My hips currently feel like they have been replaced with metal spikes and every movement or position is searingly uncomfortable. My knees to be fair aren’t too bad they are a dull ache only catching me out when I go upstairs, then the pain makes me squeak. My pelvis or to be more anatomically correct my iliac crests feel like someone has taken a hammer to them and my lower back is probably painful because my gait has been so badly thrown with everything else hurting.

I know the pain is bad at the moment as I am struggling to concentrate for more than a few minutes at a time. I am also waking every 2 hours, unable to keep comfortable when lying in bed. Sitting provides some relief for around an hour and then the pain comes roaring back. I could quite honestly weep I am so worn down with it all. I just don’t know how to get myself out of this pain game at the moment as I have explored all my usual tactics and nothing is working. Heat provides a small amount of relief until I become too hot, changing positions is fine as long as you aren’t trying to sleep but nothing brings relief for very long.

Remarkably so far it hasn’t brought my mood down too much yes I am fed up but not depressed, there is a world of difference between those two states. Whilst it would be perfectly understandable for a person with long-term chronic pain to have periods of depression I am just seriously naffed off.

I can’t believe that years ago I would manage to work whilst suffering this level of pain. I wonder if I have become more aware of pain or if it is just now that I am at home 24/7 that there just aren’t enough distractions. When you are running a department of 130 people and fighting battles to be treated with dignity there aren’t masses of opportunities to let the pain in. At that point even acknowledging the pain would have meant I would have lost the war. I did it all on massive doses of codeine and later oramorph when I developed bursitis in both hips and plantar fasciitis in both feet.

I am starting to think maybe on the pain front I gave up and now I am forever fighting to be back in control. To feel like you have given up is almost too much to bear. I still have doubts about my chariot (wheelchair) I blame myself for allowing myself to give in and use it when I should have pushed through. In reality I know that wasn’t a possibility. Not using the wheelchair would mean never experiencing the outside world again. Even if all I do is now get to look at people’s arses due to my eye line. I don’t know if it is the feeling of giving up or a feeling that I have failed as a human being. That I am no longer able but dis-abled.

The first part of this post was written in the midst of a massive pain flare up. Yesterday the pain settled, possibly due to a mega dose of B12. Some doctors would argue it was coincidental but I don’t think so. Why after so many days of pain would it settle 12 hours after the injections? Now however I am having a bad bout of insomnia. Chronic illness is so much fun you never know what will happen next. I was naffed off with the pain before but now I am seriously pissed off as tomorrow, well in fact now today, I am going out for a few hours with Jay (hubby) for the first time since August (2015). And yes you read that right.

Unfortunately insomnia before a big event and believe me leaving the house for a few hours when it’s not a medical appointment is a huge event, seems to send my adrenaline levels soaring. I become really twitchy and unable to settle. I have been trying to wind down since 7pm, now 6 hours ago. I have got up, I have watched TV, I have read, I have listened to the radio, I have meditated there is nothing I haven’t done to try to drift off. Yet sleep remains elusive. The good news is the pain really has settled it is the best it has been in months. I am just cross with myself that I didn’t recognise the signs of B12 deficiency, it is not as if I haven’t been down this road before. It’s just this time my left leg didn’t start burning.

The other bonus is of course I get to finish my blog post a day earlier than normal. I get to put it to bed, pun intended and do not have to worry about being too exhausted to complete it as I went out on a jolly.

I really hope at some point the sandman visits, otherwise Jay will have a grumpy Rachel to deal with whilst negotiating the city centre pushing me in my chariot.

Vintage Moi – again

Due to illness, these things happen even when you have the best of intentions, this week is a re blog of a previous post.

I had a terrible epiphany last week, a truly awful one, I am getting old and I really don’t like it. From now on I will be describing myself as vintage rather than the O word. It sounds kinder, more shabby chic and less like the fact I am hurtling towards pensionable age.

What brought about this epiphany? I was chatting with a friend and her daughter who is 17. I was a bit of an arrogant twat at the age of 17, I think I am permitted to admit that at the grand old, excuse me the vintage period of 41. It wasn’t her that made me feel old, it was having to explain when telling tales from my youth that we didn’t have mobile phones (I joked we used paper cups and a length of string), the shops didn’t open on Sundays and the world well it was a different place. She has never known the joy of taping the charts on a Sunday night, or reeling back in the tape from a cassette tape with a pencil, the video recorder or having a dial on a telephone. I enjoyed chatting with her it was only a few days later when I recalled the conversation when she said I was her second mum (she calls hubby her work dad) that I thought “shit, I am old”.

Years ago I could have legitimately replied to her “I’m not old enough to be your mum”. I would have used that line well into my 30’s only now I am 41 I have to admit I can’t. I think I find it particularly hard because not having had children myself, I never see myself as anyone’s mum. I therefore never consider myself old enough to be a mother. Although acquaintances of mine have already welcomed Grand Children into the world, which makes me shriek in horror! There is nothing like a friend announcing on social media that they are a grand parent to make you feel past your prime. 

Like everyone I guess I just don’t see myself as getting older. Old people to me are people in their eighties not anyone under that age but to a 17-year-old (well a 17-year-old me) I must appear ancient. At the age of 17 I would have seen people in their twenties as being out of touch with the youth of today. I would laugh at old people who would tell me on a tea break at work that they felt 18, when the wrinkles on their face clearly told me they weren’t. When you are 17 you feel invincible and those old people have no clue what life is really like. I am now one of those clueless oldies, Vintage if you please.

 A close friend who is ten years older than me has also had this epiphany and it is disturbing him greatly. He told me he had never considered his own mortality before and the length of time he might had left. Unfortunately due to my health it is something I have considered at great length. It doesn’t bother me, death is still a long, long way in the future it’s becoming vintage (in the eyes of others) that is causing me distress. I am lucky  Ehlers Danlos Syndrome tends to leave its sufferers looking a lot younger than their contemporaries, it is the only bonus of this condition as far as I can tell. I have been told a few times of late I look in my early thirties, although I would have been a great deal happier if they had told me 29.

I took turning 20 badly. I assumed that overnight I would develop grey hairs, black hair sprouting from my chin and wrinkles. I was relieved on my birthday when this didn’t happen but I really couldn’t stand no longer being a teenager. It is the only birthday (so far) that I have struggled to deal with. I think turning 50 will be hard to accept but at least I have over 8 1/2 years to come to terms with it. Just why do the years have to whiz by so fast? It seems so bloody unfair. Turning 20 made me miserable, I was excited about turning 40, it felt quite grown up. I realise however that no one ever truly feels grown up. No one knows what the hell they are doing and we are all just making it up as we go along. It’s a nice feeling to know that pretty much everyone feels the same.

I laugh at what those young people consider fashionable. When I was at school we laughed at old people who painted on their eyebrows in some 1940’s style arch, the trend now is to shave them off and draw two fat slugs on your face. It appears that the only shade of foundation to wear is orange with a great tide mark appearing where your face meets your neck. In my day (I sound positively ancient) such a tide mark would be greeted with horror. We were told in every magazine to blend, blend, blend so that our foundation couldn’t be seen and we didn’t end up with a face that was a different colour to our neck. We didn’t wear denim shorts (pornographically short) with thick opaque tights and converse trainers. I admit I wore converse trainers as a teenager obviously I was well ahead of the fashion curve. We also didn’t have eyelashes that were so caked in mascara they looked like broken spiders legs hanging off our eyelids. So many things have changed and I am left thing when the f**k did it happen? I feel like sleeping beauty awaking 100 years later in a different world.  

I remember very clearly when I had the first inkling I was getting old I mean becoming vintage. I was at work processing application forms for Saturday jobs and the kids that were applying were stating dates of birth as 1990. For one horrible moment I realised I was old enough for one of these to be my child. I don’t think I ever got over it. It upset me for days, 1990 just seemed like a blink of an eye away but clearly it wasn’t. As I am writing this I have realised that my husband and I have been together longer than our friends daughter has been alive. Those Saturday kids that were taken on are now getting married or having kids of their own. I am happy for them but it seals my fate I am now vintage. I am one of those “old” people who still feels like they are young, just massively out of touch as far as they are concerned. How and when did it happen?

The clues were there when I started liking the music that my parents played when I was a kid. Stuff I would tell them at the time was a kind of torture to be made to listen to. Asking to borrow your dad’s Leonard Cohen CD is a sure sign your becoming vintage. Enjoying BBC Radio 2 is another, I happened to have it on for a few days whilst we looked after a friends budgie, he loves having noise to compete against. BBC Radio 2 when I was growing up was for old people who weren’t cool enough to listen to BBC Radio 1 which played the music in the current charts. You have to admit time is marching on when there is a radio station  called Absolute ’80’s and a sister station called Absolute ’90’s. Whenever I think of the 1990’s I think it was just a decade ago, I want to cry when I realise it wasn’t. Next year will mark twenty years since I graduated from University. Scary!

Is it wrong that I am so vain that it saddens me more at this precise moment in time that I am more upset about becoming vintage than I am about being sick? What is wrong with me? 

It seems I can cope with having the body of a 90-year-old but not with the natural progression of time. How nuts is that?