Well….. In the news this week it would appear that the world has fell at its knees in sympathy for Lady Gaga and her apparent Fibromyalgia suffering. Now don’t get me wrong I sympathise with anybody who has this horrific disease, as I know only too well how bad it can make you feel.
But come on, and you are either going to love or hate what I say next but for fuck sakes, all this sympathy and woe is me shit is really starting to boil my piss!
Why? Well firstly lets look at what Fibromyalgia means to the none rich and famous.
1, Fibromyalgia is such a painful disease that most forms of activity and exercise are barely an option due to the pain and fatigue itself not to mention the price that is paid the following day, which usually starts with having to come down the stairs on my arse, and that would be the same arse the I could barely reach around to wipe after my morning ablusions due to the stiffness and pain.
2, We go to the GP’s begging for pain relief and what ever form this takes is quite frankly a lottery as some doctors are happy to try what it takes until a good medication is found, however my doctor won’t entertain certain medications and the ones she does are prescribed at the lowest possible doses. Sometimes I’ve doubled a dose to see if it improves my quality of life, and if it does, rather than my GP say “okay we’ve found something thats really helping, lets increase the dose”, instead I get a bollocking and accused of being an addict, then put on daily prescriptions just so I can’t go over the daily dose. It doesn’t matter that I’m a poor student with Chronic Fatigue Syndrome and in constant agony, no, lets add to this already soul-destroying life situation by having to fit in a trip to the pharmacy everyday which is 8 miles from my house, in the opposite direction to my university and costs £8.60 per day just for 8 tablets, so what? thats my punishment right for daring to try and lessen this griping pain, and if the theory that the body bears the brunt of stress is an accurate theory, then I dare say my lifespan has most likely been reduced by 20 years or more! And just when that isn’t enough to kick you when you’re down, there is the nauseating fatigue that makes me just want to cry my heart out and give up on life altogether.
3, The daily stress of feeling like a complete burden on my family, having to let my daughter down on a daily basis and the guilt that comes with this is a crippling one, the shame of watching my loving partner slowly morph into my daily carer and the loss of friends, the ones who long stopped calling me for nights out because I always end up crying off last minute. Yep I’ve lost a number of friends through this disease, you could argue were they really friends? Maybe,maybe not but what is clear to me that it was the effects of Fibromyalgia and CFS that drove them away.
4, The constant criticism from my GP for not slowing down. I’m a student nurse, with a child to support. I’m forever being encouraged to give up any desires of achieving something for myself and remain part of the working week. My GP thinks I should stay at home join the benefits system and discard any sense of pride or example I’ve chosen to set my child. Im not being critical of people who have chosen to do this, or have had no choice but to do this. It’s just personally I don’t want to.
So, the media tells us that Lady Gaga has been in so much pain that she got admitted to hospital and was placed presumably on some sort of pain relief and rest until she feels okay to be discharged. Which for Lady Gaga this is good news, good for her, if you can get that kind of response, acknowledgment and treatment from the medical profession, then grab it with both hands, I know I would. But there are millions of people saying “poor Lady Gaga, it must be awful for her” and a lot of those sympathisers and well wishers are likely fellow sufferers that understand the condition. But it will also be the case that a huge majority of these people are company directors, managers and work colleagues who have at some point overlooked a Fibro sufferer for promotion, tried to demote a Fibro sufferer or even fire a Fibro sufferer due to their poor attendance and the burden they bring to the company.
Then theres the colleagues of these Fibro sufferers who whisper and criticise their absense behind their backs, when they don’t turn in for work again and they are pissed because they have to pull in our work. I personally have worked for two companies (that shall not be named) who have openly admitted to wanting to fire me but couldn’t due to employment law being on my side, needless to say on hearing this I left soon afterwards knowing that I wasn’t really wanted there and would at no point ever progress or achieve promotions, it felt like a hatchet hanging over my head, waiting for the day they found something they could use to get rid of me and not blame Fibro.
I’ve lost count of the times I’ve sat on my bed crying and shaking in pain, so why didn’t I attend my local Accident and Emergency department? I’ll tell you why, because there is no way on God’s green earth would the doctors welcome me with open arms and say “you poor thing. Come and have a few days bed rest and we’ll put you on a morphine drip until your symptoms settle”. No, they would be furious that I was there at all wasting valuable resources and their time, accuse me of drug seeking and very quickly discharge me with a curt “are you blue, are you breathing? Yeah, well fuck off to your g.p then – coming here wanting to see a doctor – the cheek of some patients, honestly!”
I, like millions of other sufferers don’t have the luxury of saying Im a millionaire, and right now I’m losing thousands upon thousands of pounds because this is stopping me singing and dancing.
The only defence I have to offer is, Im a student nurse and am missing valuable learning, I’m a mother with a daughter who needs me around and active and the guilt of failing her alone eats me alive, I have a mortgage, bills and we have to eat and heat our house to stay alive. Unfortunately this doesn’t compare to not being able to sing and dance.
So Lady Gaga – yes I’m jealous of the treatment you are receiving, Im jealous of your millions that mean you can take as much time as you need to recover, I’m jealous of your personal assistants that can take the burden off when you need it.
But despite my jealousy I’m also a human who sympathises with your pain and I wish you well and a speedy recovery.