The backlash has begun

There's a media frenzy going on here in the UK right now, the press are convinced that anyone on sickness benefit is obviously faking it and is fast turning the rest of the population against us. You only have to read comments left by readers of such press to realise that.

It turns out that everyone on Incapacity benefit is to be re-tested from 2011 (although it's already being trialled in two areas.) The new ConDem government is also targeting those claiming DLA with a view of reducing the number of claimants by twenty per cent.

So now disabled people everywhere are gearing up for more endless appeals and form filling, despite having already been tested (numerous times in some cases) and already having won such appeals. The untrained (by that I mean non medically qualified) staff of Atos even have the power to ignore years of medical evidence and consultants recommendations.

Those of us living with (several) chronic conditions are not going to 'get better.' People with missing limbs aren't going to wake up one morning to find those limbs have miraculously grown back. Blind people won't regain their vision. A deaf person will always be deaf, yet those are the people this crackdown will affect most. 

I am diagnosed with the following Chronic conditions: Fibromyalgia, Myalgic Encephalomyelitis (ME,) Asthma, Irritable bowel syndrome, Non allergic Rhinitis, Constant Migraines, Allergy to dairy produce. I also need B12 jabs every two weeks. 

In the past few months, blood cultures at a local hospital found I also have permanently active glandular fever, that activates itself at the drop of a hat. 

I have been told there is nothing more medically that can be done, there is no cure. Life has become about survival rather than living. 

Gissa job anyone?

At last.

We ended up having to cancel our visitors for this weekend, and delay our trip down south.

However thanks to a friend and her mum, we now have a spare bedroom that's ready for guests. It's taken seven months to do just one room, stripping the paper off, filling the walls and repainting. It's what we in our house refer to as 'micro decorating.'

The relief to have it finished at long last is indescribable, the whole house has been in chaos but we don't have the energy or strength to do it any faster. Five years ago, I'd have had the entire room done in three days, now it takes us seven months, and that's with the help of friends. 

Never make plans

Because sod's law says your guaranteed to feel like shit when the days arrives.

Needless to say we aren't now going down south this week, looks like we'll also have to cancel our friends, who are due to stay this coming weekend. We're both really gutted to have to cancel, we haven't seen them since they got married.

The carpet fitter is unable to come for two weeks, just as well because we've just discovered, the carpet we brought from our old house won't fit the room anyway.

Went to see my GP yesterday, he's given me antibiotics and said to take them sooner rather than later. I feel like I've got the worlds worst flu coming, it's how a flare up always starts. I ache all over, yet my temperature is perfectly normal.

Also been given some new Migraine prevention medication, I hope it works because I get ten days of migraine hell every month.

Flare up time again

The warning signs are all there, shaking, freezing cold, it's all down hill from here on in. Just had a red hot shower to try and warm up but it hasn't helped.

This is the point where people tell me to rest up, I can't there's simply too much for us to do.

We're supposed to be going down south this week, then back in time for friends coming to stay at the weekend. At some point in between we need to find someone to lay a bedroom carpet, get wardrobes built and empty the other spare bedroom. Oh and put up a curtain pole and make up the beds in both rooms.

It's just not going to happen is it? Can't see me being well enough to travel anywhere for a while.

And we haven't even rung the carpet fitter yet.....

Blue disabled parking permits.

There's been stuff all over the media in recent days, about the alleged illegal misuse of disabled parking badges. It's reported that nationwide there are 2.5 million in circulation, apparently over half are being misused.

It's a witch hunt in the media right now, us disabled getting it in the neck again, pick on those less able to defend themselves, sure sign the Tories are back in power. I hope all those idiots that voted Lib Dem now feel thoroughly ashamed of their supposed tactical voting.

So now it seems we are to live in fear of more 'stringent' testing to retain our badges. Yet more medicals, yet more appeals, yet more stress and worry.

The general view in the media is that benefits are easy to claim and remain on, I have to say, that's not my experience at all. Most people I know have had to appeal time and time again, to get the benefits they are entitled to.

Migraine again

Today has been a day full of nothing, neither of us has felt able to do anything. Luckily some friends came over and walked the dog for us. I've been fighting off yet another migraine, whilst my other half slept all day.

I get quite a few migraines, all hormonal linked unfortunately. I've taken three lots of migraine medication since last night, (one more than I'm supposed to) it's at last cleared enough me to function again, just as it's time to go to bed. I hate days like today, feels like a long, slow death sentence.

I'm feeling quite withdrawn from everything at the moment, no particular reason. Not sure what's going on. Don't feel particularly depressed, just very withdrawn and reflective.

Coping

We're a sorry household, my other half was officially diagnosed with CFS yesterday, although thankfully they ruled out FM too. We already knew but needed it to be officially diagnosed, she's had it since having radiotherapy for breast cancer.

I had some in depth blood cultures done a few months back that explained a lot, turns out I have permanently active glandular fever. The consultant explained this is why I keep showing pneumonia type symptoms, and yet never have a temperature. It's basically tricking my immune system in to overdrive.

How do we cope? Some days I simply have no idea in all honesty. I guess we try and look after each other, that and compromise a lot.

Better day

Enjoyed quite a nice day today, had enough energy to potter around in the kitchen. Might not seem a huge deal, but most days I don't have the energy to cook proper food.

Made my other half an apple cake, can't stand apples personally, but they're free out of the garden. Chucked some ingredients in to the bread maker and left it to magically conjure up a loaf. We've even had a hot meal this evening.

Fate

If further proof was needed that my old life is gone forever, never to be seen again, I guess taking delivery of my brand new wheelchair seals such fate. It's been a long time coming, Occupational health ordered it back in May, apparently they have to be made to measure. I'm guessing with my lanky legs, it's also took them a while to save up for all that metal.

It's not as bad looking as I'd feared, it's all black rather than the normal health service colours of beige or silver. I've self propelled myself up and down the hallway a couple of times, the cats climbed on it to go to sleep, and now it's back in the hallway being thoroughly ignored by me.

I know in my head it's probably for the best, I spent five months stuck indoors this year, I was so ill and my mobility had become so limited. But now it's here in the flesh (so to speak,) I can't help resenting it, even the quick release wheels have failed to ignite my enthusiasm. 

The hidden cost

I'm not one for thinking things through before doing them, I'm an Aquarius, we're known for being very impulsive. I share my birthday with Robbie Williams and we all know how daft he can be.

Just over a year ago I begun an internet based project, in the hope of raising awareness. It's fast become a labour of love. What I hadn't realised was that by doing so, I'd lose the right to be me. Don't get me wrong, I'm immensely proud to run a project that's bringing support and friendship to so many that have felt isolated for so long, but it's come at a hidden cost. 

Over recent months I've come to resent not being able to be myself online, because of the project I'm seen as the strong one, the one keeping the herd together. People can't seem to recognise that sometimes I might need support as well.

I've made a couple of really good friends through the project, for which I'll always be grateful. but the project has also cost me friendships. My Facebook account is always being tracked down by fans of the project, despite the lengths I go to with my privacy settings.

It's not that I'm particularly anti social, although I don't deny being a loner, it's simply that most of the time I can't even manage to follow a conversation, yet alone hold one, whether it be written or spoken.

Making plans

One thing you soon learn about living with FM and ME, is that you can no longer make plans. Nothing from food to social events, can be planned in advance. 

I've learnt to wait and see how I feel on the day. Too many times I've made plans only to find I can't open my eyes, yet alone get out of bed. I can't even promise to make medical appointments, I just book them and hope for the best. Thankfully I have a very understanding doctor.

The worst thing for me is when my family arrange to come and stay with us, that may seem strange to you, but the last couple of times they have visited, I've been stuck in bed unable to move and missed their entire visit. I love spending time with them so you can imagine how bad that makes me feel.

I'm luckier than a lot of people, in that my family understand fairly well and make allowances for me, as does my father in law, there are many sufferers out there who are much less fortunate.

Acceptance or giving in?

I've been thinking about this a lot lately, in certain situations can acceptance and giving up, mean the same thing?

Health care professionals are very keen that us patients choose to 'accept' our illness. My other half was refused a place on a pain management course, for not coming to terms with having a disability.

But for a stubborn old mule like me, I kind of see that as giving up. Besides, what does accepting an illness really mean? It's not like we can turn round and say 'Nah don't want this' and simply cast it aside.

We have no real choice but to accept we are ill, if we don't and we try and carry on as normal, we'll end up hospitalised, so it's not like there's much choice involved.

 I've had another two insomnia filled nights in a row, does it show?

I was asked today why I'd started a new blog

I've had a few blogs in the past but although they built up a good following, all eventually succumbed to the delete button. Never to be seen again, except maybe in some strange Google search results in years to come.

The one rule I have created for myself with this blog, is that I wish to remain anonymous as the author. I want some place I can raise awareness but also release my thoughts, without having everyone know it's me. There's no sinister reason to remain anonymous, it's just that publicly I already do enough for the good cause.

So, if you do manage to suss out who I am, please don't out me as the author. I ask you to respect my right to publish anonymously.

As time goes on you will notice I cannot promise to blog with any regularity, I'll just write when health allows.

you can force positive change

Back in late December I had a massive flare up, resulting in my doctor shipping me off to hospital in an ambulance for respite care.

Sadly What you are about to read is quite common amongst the NHS.

To cut a very long story short, the treatment I received at the hands of the hospital was nothing short of appalling. Despite my diagnosis, and a letter from my GP explaining he had already rung ahead and arranged respite care for me.

The consultant on duty (in clinical decisions) insisted on trying to re diagnose me, and also tried to forcibly discharge me. At one point (when I protested that should simply go read my medical notes) a nurse told me 'you can't blame the consultant, I've never heard of it either.'

Basically (like many health care professionals) those in charge of the clinical desicions unit that day, beilieve FM and ME do not exist. Eventually they gave me the fluids I needed via a drip and I was forcibly discharged the following morning, and told that in future the hospital wasn't for respite care.

So once I'd recovered a little (four months later) I begun a complaint against both the consultant and nurse.

After several letters were exchanged between us and the chief executive, the hospital did apologise for many of the errors that were made concerning my care. Further more, it went on to enclose a copy of a leaflet they had acquired from the Fibromyalgia association.

They have now sent this leflet to all staff working in accident and emergency and the clinical decisions unit. The nurse concerned has also (in her own time) made a point of researching Fibromyalgia and ME.

However the chief executive of the hospital still maintained that they do not provide respite care and that should be arranged elsewhere.

Which left me vulnerable, unable to access respite care, our only other respite hospital won't accept patients who need IV fluids.

Some time later I went to see a general physician at the very same hospital, what a breath of fresh air he has proved to be. He has now written a letter to remain on my file.   

This letter basically says that when I need respite care in future I am to be admitted (by ambulance) to the same hospital under his list, given IV fluids and sent back home by ambulance the same evening.

So it seems the hospital is the right place for respite care after all, I am now sending a copy of this letter to the chief executive, for him to place on my file.

It's been a long struggle to get the basic care that I need, but it just goes to show you can force positive change.

I consider myself a positive person

However there are times when I am desperately ill, I pray death comes soon. During severe flare ups, I have even been known to beg my partner to let me die.

That may shock you, that death can seem preferable to living. The sad reality of living life with FM and ME, is that sometimes death, really would be a welcome relief.

Imagine not being able to get out of bed for weeks, wanting to amputate both legs because the pain is so unbearable, constantly covered in sweat and yet shaking uncontrollably. Being so weak you cannot even take on fluids. Constant migraines, IBS attacks, unable to make yourself understood, never able to make plans, and that's just an average day.

There are sixty three (reported) symptoms for Fibromyalgia, and around sixty three Symptoms for ME, perhaps now you can see why death sometimes feels the better option?

Dreams.

Despite being so ill, I still hold on to some dreams. I'd like to see more of my writing published, but because my health is so unpredictable, I'm rubbish at making deadlines.

The Fibro Fog can be a disaster for a writer like me, reducing a bright, clear, fast thinking brain to a pile of unimaginable mush. It's vastly different from writers block, and much more devastating. Writers block can be resolved by using special writing exercises to get the creative flow going. There is no cure for brain fog other than time, wait for a clear thinking day, then write like mad.

There are (very rare) times when brain fog makes me laugh, when I find my keys in the fridge, or forgot the dog is in the garden, then spent ages searching the house for her.

Living with Fibromyalgia (FM) and Myalgic encephalomyelitis (ME)

I'm quite a solitary person, preferring the company of animals or gadgets to humans. Quite odd you may think, but not when you consider I live with more than one chronic illness. What I have isn't terminal but they won't make life particularly pleasant either.

I've had to come to terms with the fact that I may never work again. The pastimes I once cherished are also gone. In their place, lies a much slower pace of life that's more about existing than living.

I'm thankful to live in a world that allows me to feel connected, even when I'm unable to get outdoors for long periods of time.

I have no idea what I hope to achieve with this blog, other than to remain anonymous, a hidden face behind a keyboard.