There is no magic pill, drink or technique that will cure you of having a chronic health condition. Well-meaning people will say in the early days, “Oooh try this thing”. Or, “I’ve heard if you cut out bread, wheat and chocolate digestives you will be just like you used to be.”
And that’s the key – just like you USED to be.
You know! Normal. When you thought nothing of working all week. Getting home on a Friday, then a quick change and off out. Get the housework done Saturday, out with friends, chill out on a Sunday. Plan your week, maybe even plan months ahead.
Do you remember being that person? I do! I remember her saying, “Yeah. OK. Well, I’m busy for ages. Can we pencil something in for October?”, when you’re sweltering in the July heat. I worked hard as a high flyer. Making important decisions, planning months in advance, having a CHOICE. Even if it was wasting my life, putting off what I didn’t really want to do; or was frightened of doing.
Getting diagnosed is like bereavement. Sadly, the person you are mourning is yourself. You begin to see life differently and it falls into ‘before’ you got ill and ‘after’. Everything is now measured by that. “Before I got ill, I could and now I’m ill, I can’t.”
Friends and family listen patiently, offer helpful advice and sometimes get caught up in trying to find a cure, or maybe even think you’re faking it a little. After all, you don’t really look sick, do you?
How can you be full of beans one day and turning down their invitation the next? You show them the spoon theory, explain it and hope they understand. Maybe you even try and keep up with them; denying you’re ill and putting on a brave face. It’s just not done to whinge or complain. There is always someone worse off than you.
No matter how supportive everyone is, the guilt of letting people down and your need to be NORMAL drives you into denial. You carry on trying to do everything you did before, burning yourself out so you end up even more likely to not go out in the evening.
Weekends turn into a duvet-fest of sleep, pain and a chance to take off the mask of “I’m ok.” You will be back to your old self just as soon as the doctor prescribes you the right pain killers, when the physio stops talking and actually helps you. Of course there is nothing YOU can do.
Denial, Anger, Frustration, Fear, Sadness, Loneliness, Worry become unspeakable words – to say them out loud even in a whisper late at night to yourself is unthinkable. So you carry on taking the pills, leaving the stuff your doctor gave you unread..life carries on right?
Dammit how dare this stupid illness affect you like this, YOU can beat it right, you just need to carry on. If work will be a little flexible you can manage full time, having a little nap when you get in will let you go out, change those killer heels for flats and of course you can dance till dawn, if you’re good all week the carb fest at weekends won’t break you. Changing to a slow swim rather than a full work out, meh you never liked the gym anyway. The washing up can wait; maybe you will buy a dishwasher. The new dress you bought without fiddly buttons is well comfy.
Only you need to know about the ton of used tissues hidden behind the loo from all he tears, how the pain at night sends you demented, or how bone wearingly tired you are. No one needs to hear that. More importantly if you give into it then it becomes REAL and not just a temporary setback on life’s journey.
Anger, Frustration, Fear, Sadness, Loneliness, Pain, Desperation & Worry no longer get denied, they clamour to be heard and spoken out loud
One day I assure you, or maybe you already know because you have reached the next stage, you hit a brick wall and you have to STOP and own up. It really is that bad, and no, you’re not coping. There is something you can do but you have to be ready to recognise it. Very often the first and most positive step you can take is to reach out to others.
Finding an online support group like UK Fibromyalgia or just googling Fibromyalgia support will give you a host of information, advice and support. If that’s as much as you do right now, while you struggle to accept that this is here to stay then that’s brilliant. Maybe you have been bumbling about for a while, saying the words and doing what’s advised but until YOU accept it on an emotional level then you won’t move forward. It’s ok to not accept, and perfectly normal. There is help when you’re ready.
This first blog looks at the beginning of getting your head round and accepting that a diagnosis of a chronic health condition like Fibromyalgia is difficult, painful and at times soul destroying. It takes time, and all of us need support to come to terms with it. Sadly I don’t think there is enough support, guidance or help at the point of diagnosis.
In particular the impact is simply not appreciated, I was told by a senior Rheumatologist that Fibromyalgia is a hindrance to life not a destroyer – He was both rude and misguided. It is, in fact, both. However, it is possible to have a life, but before you can build a new one you need to grieve for the one you had.