Life After Steroids

Well the break from the bloody lesions was short lived. The minute I completed the course of steroid wham bang and another bloody lump appears and others flare up again. How on earth will I ever be able to work again I really do not know. There is no respite – I wish that a fraction of the predictions by the medical profession were true. The one about remission would be good…but yet again I am in pain, Cannot sleep and spending hours of my life crying and crying.

I am now so fat that it is ridiculous. I hate this body, I hate this life in fact I am so fucking angry about the whole damned thing. Guess the happy mood was short lived too. I wish that I could be more focussed, happy and directed but all I seem to able to do is eat, eat and fucking eat. Spent most of today lying on the sofa watching shit TV and stuffing myself with food.

I am broke in more ways than I could ever imagine a human being to be. Money is gone, health is gone, happiness is gone, friends are gone and people keep dying around me. If there is a God please save me from this hell.

Blue funk again…..

Finally

Finally a doctor that actually listens and checks things out. Hmmm seems like the joint pains and tendon creaking is because i am hypermobile. The condition explains the pain, the headaches, joints that pop out and then go back in trapping nerves etc.

It only took forty years to get a diagnosis! My GP is so crap, he just put down that i had been whinging about pain for the last 6 weeks - idiot he treated my hand over a year ago.

However, I am going to try and be a bit more positive from now on - even if I am as frustrated as anything by the damned medical professionals that seem unable to think laterally at all.

Spent this weekend in and out of hospital with a chest infection and asthma attack - bummer yes but the good news is that massive doses of steriods are also pushing the HS into oblivion - i mean it no pain. apart from my chest, which hell yes is sore and uncomfortable, the other issues are being masked by the steriods and things have eased up.

So apart from an urge to shake my GP into oblivion and put him out of my misery, things are not as bad as they could be.

Maybe finally the blue funk is over and the vandal seems quiet at the moment, with miss optimistic fighting back - yeah!

Pain Pain Go Away

12 days and counting – nasty pain, 5 lesions are swollen, infected and sapping my energy. Doctors are a complete waste of time – I can’t get there to get a prescription and they won’t call me back or come to see me. I am told to put request for antibiotics in writing, hand deliver as an emergency prescription and then it will take 2 days. I just cannot believe how mental the system is.

I have asked if I can e-mail it and they say no. What do you do when you live on your own and you have few pals and no one to ask to do it for you. Its a total shambles.I am pissed off and angry at this damned illness that gives me no respite. Bought a book on pain control, great book but essentially my condition is chronic with frequent acute flare ups. There is not one day that passes where my body is pain free.
My joints are now all swollen – asked the doctors and they said uhh no its not linked to Hidradenitis Supperativa – then I spent nearly a months worth on benefits and bought the only medical book on the subject and there in black and white it says yes there is possibly a link – reactive arthritis more than likely. So great i have a incurable skin disease that most medical professionals know nothing about, i now have arthritis and my weight is piling on and i cannot really think of way of not feeling so damned down.

The other day I decided to go for a walk despite the pain and went to my local park. It was a beautiful day, sunny but cold and fresh. I walked just over a mile – it took about half an hour. This is the best speed and distance in about 4 months. 2 years ago around this time i was walking over 3 miles in about an hour. That just shows just how much things have got worse. 2 weeks ago it took me about a hour to walk about half a mile.

That said walking has its own price to pay – 2 days ago i walked for 30 mins and now i have been in agony for 2 days, temperature, infection, swelling and pain. This all results in tramdol and pain killer mixture of drugs, insomnia and this sodding drugged feeling. No exercise and a mouth that is so dry regardless of what I drink. My solution – to eat loads of carbs, feel like shit and get as horizontal as i can. Can’t even wear clothing as it is too painful.

They told me to keep a diary, so far I can only maintain it every few weeks or so – so now i am thinking lets just keep this online blog as my daily diary – lets face it is a bit easier to do and maybe someone might chance upon it and offer a helping hand. Who knows??

grumpy new year

so its another year and yet again I am laid low by this damned condition. That and the weather have left me fatter and more miserable than ever. New year? seems like it is just a case of same shit different day! I am at the foot of this mountain and preparing for my first steps up it – when i get to the top nobody knows and i will probably be dead before i get there but i have a glimmer of hope in my heart that this year life will be different and the pain will be less often.

This is no Life

3 days of no activity – nothing but pain. Lying on the sofa eating sweets like they are drugs – pain so bad that i want to die. Is it a crime to really want to die? I don’t mean dramatic suicide attempts, what i mean is that when pain is so bad that there is no respite all i can think of is ending the pain. Tramadol, paracetamol, ibrufen cocktails take the edge off but leave me tearful and woozy.

Whispers of Pain

A Tramadol, codeine, paracetamol and ibrufen cocktail today – but this also means no sleep. Pain is still lurking at the edges of my fuddled mind. My body is in so much pain – a combination of a cruel and incurable skin disease and a morbidly obese body culminates in an existence that only vast amounts of painkillers allow me to move without needles of lightening shooting up my body. Wooziness ebbs and flows through my mind and the vandal in my mind is currently stoned. He has been pretty chatty the last few days…whispering nasty thoughts into my mind. Thoughts that make my toes curl with shame and my tummy flip with fear.
Why does the vandal in my head do this to me? Thoughts of mindless torture of innocent creatures. Yesterday it was flitting thoughts of boiling my beloved dog. How awful am I for thinking such depraved and nasty stuff. Now don’t get me wrong, I am not acting out these thoughts in any shape or form but the sheer fact that this stuff even enters my mind is highly disturbing.Today Vandal kept going on and on at me to take the pills – all of them and end it forever – this one is getting hard to ignore again. What stops me I will never really know but something somehow always does. However like the nasty torture thoughts, these suicidal thoughts leave me reeling in a mental disarray, with the urge to scream at the world ‘ I want to get off now’.
My mouth is dry and my brain is in slow mo, nausea tickles my tummy and grips my throat and today i do not really want to anything much. I have to wash because i am now smelling quite ripe. That horrible sweet rotting flesh smell, emanating from my private parts, is forever in my nose and no matter how much i wash my body, clean my clothes or bleach my home, the smell never quite goes. People who know me assure me that it is only me who smells it but i live in constant fear that one day they will smell it too.
And so, finally at 7.30am in the morning i am starting to feel drowsy and so I will seize this opportunity to finally rest my head and body for a few hours before putting on my brave face for my mother who is currently visiting. Three days to Christmas, i wonder if Santa will bring me a cure – not bloody likely!