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.

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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?

 

 

Tired and in Pain

Last month I celebrated or not my 9 year anniversary of being sick. You’d think with this much time passing and me not getting any better I wouldn’t feel like I still have to constantly explain what is wrong with me those that know me. I do try to cut them some slack, obviously there is a lot wrong and even I struggle to remember every single condition. However it does become really grating when yet again someone asks a stupid question or suggests a cure or tells me they “feel” the same way I do.

I will apologise in advance because this is probably going to turn into a slightly ranty post. I do feel that it is warranted due to the sheer lack of understanding that is displayed towards me. So just to clear things up I will break it down for those of you struggling to understand.

1.Tired
When I say I am tired, I am tired. Not tired as in I have been to the gym, had a haircut and wandered around the shops for a few hours tired. It is not the kind of tired where you’ve worked an 8 -10 hour day. I am the kind of tired where I haven’t slept more than 4 hours a night for a few days or I have had excessive amounts of pain to deal with or I am fighting an infection which is causing my PoTs to go crazy or I am dealing with all of those things. I am the kind of tired where stringing more than a few words together is difficult, I am so tired that I could fall asleep standing up (if I could stand for longer than a few minutes without feeling faint or fainting). I feel so tired that it’s actually getting difficult to walk because I am struggling to lift my legs up.

This is where I cut people a little slack because I am tired pretty much all of the time. After a few hours of being out of bed I would quite happily go back there for the rest of the day but I can’t because my back would cause me all sorts of problems. I guess the issue is language due to there being a limited amount of words to describe what I am feeling. Exhausted seems a little melodramatic for my liking, using it every day would diminish its effect. Fatigue is another word I have an issue with again because it just doesn’t sound quite expressive enough. Saying or texting the sentence “I am fatigued” just seems a bit wishy-washy. I’m shattered equally doesn’t really cover it. It’s the kind of word you use after a 5 day week and partying all weekend, it is a throw away term.

The problem is so many people in society complain of tiredness due to the stress and pace of their lives, it is an overused word which has lost its impact. It is partly my fault because when I say I am tired you can only compare it to your own level of tiredness. When you are chronically sick fatigue / exhaustion / tiredness take you to a whole new level one you never knew even existed. Sometimes even I am shocked that my body is still able to function when I am suffering from this level of fatigue.

2. Pain
Now let me be crystal clear I am not diminishing anyone else’s pain nor claiming I am the only person in the world that suffers with it but it is slightly irritating when someone claims to be in agony yet they are a) still working full-time b) going out socially or c) telling everyone about it on social media. Everyone has different pain threshold my definition of agony will be different to others because we all perceive pain differently. However I think many of you will agree with this
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I also have on a number of occasions had this look on my face when someone has told me that they are in agony. When I am in agony my phone is the last thing I am looking at. I am usually counting down the minutes until I know my pain medication is in my system.

Pain is subjective, what I class as a 10/10 on the pain scale others may class as a 5. In my daily life I have pain, every single day. It is at a level where sometimes it is background noise and other days like today despite being almost maxed out on pain medication it is wanting to make itself heard. A 10 out of 10 pain for me is usually caused by bowel adhesions, the pain from these will cause me to black out. I use this as my 10 as I don’t have labour to compare it with. When you are female childbirth is always used as an example of a 10 out of 10 pain. Heaven knows what they tell men, I never get the male example given to me they are usually completely stumped when I utter the words “I don’t have kids”. Today clearly my pain is not at a 10 out of 10 level because I am typing my blog however to be able to do this my neck is in a soft collar (because since Saturday my upper back has been going in and out of spasm and the pain is originating from my neck. Possibly having my hair cut today was not a great idea.) and I have four hot water bottles placed on various parts of my body. I would rate my pain today a 6/10 it’s noticeable but not completely incapacitating. To someone who wasn’t used to this level of pain or who had a different pain threshold it could be their 10 or their 1.

The word agony is thrown around quite easily, I think most of us would agree when you stub your toe it is sheer agony for a few minutes. It can in those few minutes be incapacitating but after a while the pain subsides. It may throb for the rest of the day but you can carry on your planned activities. Agony is not being able to go to work or walk around the shops or carry on with your planned activities. Agony to me is not being able to get out of bed despite taking enough morphine to sedate a bull elephant. Maybe I just see things through Chronic pain / illness tinted glasses but the word agony is being distorted through overuse. You can tell a doctor that you are in agony but get zero response, firstly because they can’t feel your pain and secondly you are probably the 10th person that day to tell them that.

Agony is a lonely place to be because others don’t understand it and can not feel it. You can’t share it, you can only carry that burden alone and wait patiently for the meds to kick in. I find pain that creeps above a 7 on my personal pain scale starts to alter my mood. I become very angry, snapping at everyone and finding everything annoying. Pain at that level will move me towards “I’m not doing people today” because the pain is interfering with my brain so much I can barely function. So I get frustrated when people use the term at the drop of a hat. There are other words to use to describe pain discomfort (that would describe my current level of pain perfectly), sore, aching, throbbing and one of my favourite “twinge”. I have twinges in my back quite a bit. I don’t know if it is because we are becoming lazy with language or more and more people are discovering a flair for the dramatic but it is a pet hate of mine when others use the word agony when they clearly aren’t in agony.

Unfortunately I use the word tired and the phrase “in pain” quite a bit. I imagine that also causes people to not hear what I am saying because they hear it so often. I need you to hear me, I don’t mention my pain until it’s hit a level that I can’t ignore, the same goes with tiredness. I am sorry if you don’t understand that however the problem is yours not mine. If you ask me how I am and I actually tell you the truth, you are amongst the privileged few. If I acknowledge pain in front of you, it has reached a level where my energy is being drained away and it is interfering with my cognitive function. I don’t tend to announce it as I don’t want to put a downer on the proceedings. If it’s mentioned I can’t physically or emotionally hide it anymore.

I don’t want bucket loads of sympathy, I just want to be heard and acknowledged like everyone else on the planet. So understand me when I say I am tired or my back is hurting I don’t expect you to fix it but I also don’t want you to ignore it. I want you to respect that at this point in time I will not be the life and soul of the party, I will not be jumping to attention if you ring or text me. A little understanding goes a long way.

I in turn will not diminish your pain or your level of tiredness after a long day at work because 9 years ago I was you.

Bouncing Back……I wish!

Well it seems 2016 wants to emulate the crapfest that was 2015, only with its own individual twist on things. In the last week I have managed to have three different courses of antibiotics, a nasty allergic reaction to one of the antibiotics, an abscess the size of a quails egg and a uti (urinary tract infection for the uninitiated). Not bad going really seeing though it is only just February.

I have spoken in the past about how I suffer from the chronic skin condition Hidradenitis Suppurativa Link. It’s a condition that produces painful abscesses on the body mainly under the breasts, on the buttocks and groin. Yeah I know it’s a laugh a minute. No one knows what causes it and it is very common amongst type 1 diabetics of which I am not. So my case is even more peculiar. Thankfully I know I am not alone dealing with this and have actually found out that I have a few friends who suffer with this. We tend to suffer in silence because who wants to admit that they have an abscess in their groin or under their bust ? It’s not a great conversation starter. The word abscess alone either conjures up images of IV drug users or bad personal hygiene. Personal hygiene has absolutely nothing to do with it, I have washed in hibiscrub and still developed enormous abscesses.

A week ago last Monday I woke up with an abscess in the crease of my thigh, the top of my leg, how can I describe this? Between your thigh and your lady or boy bits. A medical term no man’s land. It was huge and had come out of nowhere. On a scale of abscesses I have had before this was f**king huge, the pain actually woke me up. The pain wasn’t contained to the site of the abscess it also was creeping down my thigh. No position was comfortable and as the morning went on the bigger it grew. By the time it had reached 10am the abscess had hit the size of a quails egg hanging down from my thigh. If you are curious to see the size of a Quails egg click this Link.. Now obviously a Quails egg isn’t that big but it feels bloody ginormous when it is hanging from the top of your leg. I was so uncomfortable that I had to borrow a pair of my husbands trunk style boxer shorts as my own knickers were lying right across the abscess.

By 10:30am I was lying on my bed crying, I was going to have to ring the doctor’s surgery. Due to having chronic health conditions I hate running the gauntlet of the doctors receptionists. A number of them know me now and when I ask to speak to my own gp have no problem with asking him to ring me. However there are a number of newer staff who haven’t had the pleasure of meeting me and stick with the line Dr XXX isn’t the duty doctor today, which is exactly what I got. Thankfully my doctor must have been having a look at the list of calls needing to be made and he rang me back in 30 minutes.

I explained to him it was the worst one I had ever experienced. I forgot to mention that over the Christmas period I had been dealing with so many small abscesses I actually lost count. This is what is known as a HS flare, it is one of the most painful things I have ever had to endure. I am no baby when it comes to pain having endured a lumbar puncture and the removal of the side of big toe nail with a local anaesthetic that was no longer working. The only time I am a wimp is at the dentist. So I was prescribed the antibiotic Flucloxacillin which I have taken for years and had no problems with…..

I was lucky that my abscess burst the very next day, it was utterly disgusting, enough said. With the pressure gone the pain went. I was still feeling pretty rotten so I continued to take the seven-day course of antibiotics to avoid a secondary infection and the need for this abscess to be drained at the hospital.

Wednesday I woke up at 1am and took my antibiotic. About an hour later my face felt very itchy. I thought nothing of it, sometimes I get very itchy skin. With it being my face I tried not to scratch but as the morning went on it was becoming more and more uncomfortable. At 7:30am (having not been back to sleep) I took my next antibiotic within 30 minutes my face had erupted in small bumps and was bright red looking like I had been sun burnt. As I waited for the doctor’s surgery to open I could see that the redness was no longer confined to my face, it was now spreading down my neck and onto my chest. I knew having had these kinds of reactions before it was imperative that I took some antihistamine to slow the reaction down. I also very naughtily applied a weak steroid cream to my neck, face and chest. The itching was hitting an unbearable level and when it didn’t itch it was very sore.

 

 

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It’s not a great photo but you can see how nice and blotchy I am.

 

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In this picture it has calmed down a little but you can see how bumpy the skin on my face has become.

 

I was gutted by this allergic reaction as it means there is now another antibiotic I can’t take. Flucloxacillin has been my go to for years as I have had so many reactions in the past.
The pool of antibiotics that I can take safely is now little more than a puddle. It is starting to get quite dangerous. As I still needed to be on antibiotics to ensure the abscess was no more I was placed on Clindamycin. I had no allergic reaction with Clindamycin but the side effects of this medication were just too much. I lasted three days, I hate throwing in the towel with antibiotics but there are only so many bouts of explosive diarrhoea a girl can take and I can’t run that fast or at all really.

My face was slowly starting to subside and was no longer itchy, just very, very dry where the skin was starting to come off. I have had this reaction before with CT contrast dye so I knew what I was in for. At least this time I knew to moisturise like crazy, Vaseline has become a good friend as I plaster my face in it before I go to bed. I had a couple of reasonable days at the end of last week other than a disturbing symptom, I kept losing my central vision for a few seconds at a time. A black / grey dot kept appearing and then would disappear. I wont lie I was slightly concerned with Ehlers Danlos Syndrome there is a remote possibility that my retinas could detach. I decided that come Monday I would have to see my gp and discuss this with him.

On Sunday morning the dot kept appearing then disappearing. It was annoying me so much I mentioned it to my husband in a totally casual manner so as not to alarm him. Only an hour later I was struck down with a classic migraine, I had just been experiencing the longest prodrome I had ever experienced. For more information on the four stages of migraine click this Link. This was a classic migraine with aura, nausea and a lot of pain. The rest of Sunday was a right off and Monday wasn’t much better as I dealt with the after effects of the migraine. I hadn’t actually had a “proper” full on classic migraine since 1st November 2013 (my 40th birthday), thankfully that day the headache part of the migraine wasn’t too bad either that or it was masked by the copious amounts of alcohol I consumed. Having a migraine out of the blue like this was a shock, I normally only get them when I am stressed or over excited. I am hoping that this was a one off and that they won’t be coming back on a more regular basis.

By Tuesday I was still feeling rotten but I quickly realised that I had developed a UTI, cue more antibiotics. I also woke up that morning with a cracking bout of ptosis. Thankfully this went away within 35 minutes of taking mestinon. However it shows you how low everything has taken me. Its going to take me a while to bounce back.

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It has taken me years to feel brave enough to post pictures of myself with ptosis. If you look very carefully you can see that my right pupil has also drifted and is no longer in alignment with the left pupil.

So it’s now Wednesday (3rd Feb) the day before my blog is published, by the seat of my pants I am getting the piece together. Today has been the first day I have felt well enough or had the concentration span long enough to write anything. I am hoping that this isn’t the start of another year of continued shitty health. As I said at the beginning of this post 2015 was a crapfest from the 26th February onwards I was constantly fighting to stay healthy. I lost, badly, I ended up being diagnosed with Meniere’s Disease in September and my prolactin levels decided to rise on their own accord making me hungry, fat and tired. I was so glad to see the back of 2015, I honestly thought this year I would be on top of the things that made 2015 so bloody awful. There was nothing now that I couldn’t handle.

I spent an hour in bed yesterday throwing a pity party for one wondering why the hell this was happening to me again? The answer always came back why the hell not? I climbed out of my bed after my mini tantrum and watched a film with hubby. Nothing was to be gained by lying in bed all day other than a really sore back. I refuse to give in and will push for as long and as hard as I can to ensure I control as much of my life as possible and not the motley crew of chronic health conditions I now have.

So to cheer everyone up here are some pictures of my hounds. They love me whatever is going on with my body!

 

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Mollie

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Frankie

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Willow

Finally how I look makeup free without an allergic reaction going on.

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