hell

oh crap i am again in debt by £600 – i will need to work very hard to stop spending at all. how could i have done it again?

pain in head and body – maybe death really is an option?

Some Answers But More Questions

So after a long wait I have finally been seen by the physio, the podiatrist and occupational health. However despite being desperate to find answers to my HS and a way forward, I seem to have gained more conditions to my motley collection.

I have been told that I am hyper mobile and that inflammation of the tendons due to stress (ie bacterial/viral/auto immune and physical) is what is causing joint pains and stiffness. That I have a ganglion on my radial/carpal joint which is preventing full movement and causing immense pain. Hmmm so what now? Apparently it could be also a type of arthritis.

Ok so I know all this  - there are names to the pains but what in hell is the way forward. Painkillers, help will remobilising stiff joints and underused muscles, realignment of my skeletal frame, however there is no real cure. More painkillers and more doctors argggh!

I fell down the stairs yet again because my knee locked and my ankle gave way – I can’t even wipe my bum properly because I cant use my hands well. Don’t get me wrong its not that bad all the time but I am seriously concerned because I am only 40, what's going to happen from now on?

I want a job, I want money back into my account, i want no more pain, no more doctors, no more people telling have you tried this or that like i am some kind of idiot who just does not think or try anything, I want to do more than sit around waiting to die.

So I ask questions, get a few answers and then ask more questions – you would think that between some 7-8 specialists someone would be able to help????

Falling Apart

I am still in pain and each day things seem to be overwhelming. It seems easier to go to bed, eat or slob out on the sofa than to get on with life and living.

I am so worried about money and despite huge help from my father, there is still no money in the pot so to speak. Yet i keep spending money – why  - i really don’t know. Its like why do I eat when i know that arse is the size of a small country, why do dally when there is tasks and work to be done, why do i keep doing this to myself?

Even getting washed, brushing teeth and general care has gone and i have had enough. Its so damned pointless. So with that in mind I have created a schedule and I am bloody well going to stick as best as i can to it – it paces me and ensures that things get done.

Please God help me to turn my life around and get a job and be back to how I was…i hate this lonely crappy existence.

How to Hate Someone

I can’t stand her anymore. she does my head in. She steals all my ideas, plays on my illness and uses me at every opportunity. She avoids me when she knows she has acted without integrity and I think she is a smarmy lazy bitch.

She wants me to be the sad sorry person, so she can step in every now and again with a pint of milk or something and tell all her friends how awful my life is but she is such a fucking saint for helping me out. some help – its the scorpion type of help and if you were to tackle her she would act all innocent and play at not knowing what you mean.

An ageing wannabe that’s what she is and she has no original thought left in her head – she has to steal peoples contacts, ideas, creativity otherwise she would a shrivelled sagging fat cow. Nasty nasty person and I wish she had never been in my life.

She gets her old aged mother to travel to her to do her cleaning and then complains about her, she gossips about people without a first thought and she is a clumsy oaf of a woman.

Not content with my thoughts and contacts she has now gone and stolen from my friends. To date she has:

copied my blog idea

copied my e shop ideas

copied my creative work

patronised me about any sales I have done

checked up on how much money i have made

gone to the same outlets i have sourced and tried to get her foot in the door by saying she is a mate of mine

copied my website idea

not told me of selling opportunities when i have shared mine with her

has approached my friends because she has none of her own

Has used their contacts for her own end

uses me to do her work

told people she cares for me – as in does shopping etc. for me

arranges stuff and then just does not turn up or contact me to let me know she has changed her mind – then pretends she has and makes out that i am spaced out on painkillers and must be mistaken or says oh i thought you would not be well today so i didn’t bother.

and the list goes on – how on earth did I let the devil into my home, my life and my head????

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??