Coping with it everyday is hell. There is no let up. None at all. We are all on pain killers but in truth they don’t help. The reality is that they just make you feel worse.
And of course coping with constant pain day after day all over your body means that something has to give.
Keeping a brave face on-show is just as tough as living with the pain. At some point you have to release the pressure. Most Fibro suffers hate people seeing their pain and so they smile, or try to. We don’t want to be defined by this condition.
Personally I find that moments alone can end up with an involuntary release of built up pain. That moment alone when it’s OK to be weak. A moment when no one will see. A moment when being weak won’t affect anyone else.
It’s not uncommon to cry in the shower. No one can hear you and its a moment of being truly alone to be able to let go. Starting most days like this can be tough but when you wake, sit up, feel the pain and realise you have yet another day of fighting ahead of you… its actually quite normal.
‘Keeping a positive outlook is a fight. Waking every morning without thinking “here we go yet again” is a fight.
You see after a while you get to know the signs. You learn what each pain actually means.
Sitting up in the morning you know straight away what you are up against. What kind of day its going to be. The scale of pain you are up against and whether its something you will be able to dull or whether its something you will just have to live with.
I have a headache scale, I can tell exactly how long it is going to take to rid myself of the headache I wake with every single day. I know it will either be an 11am, 3pm or all day headache as soon as I wake. You learn to understand your pain.
The problem is that knowing this information can be seriously hard to live with. Imagine waking in agony knowing that no matter what you do during the day you won’t get rid of it. You won’t improve it, you won’t even be able to dull it. Yet you have the whole day to cope with.
Something has to give.
One thing I have learnt from getting to know some amazing Fibro sufferers is that we all fight to put on a smile. None of us want to be seen as suffering, we all fight to appear normal and to live as normal a life as possible. None of them give in to this. That doesn’t mean they cope inside, it doesn’t mean they are able to get out of bed and it doesn’t mean that they are feeling OK just because they have managed to smile.
Personally I fight to smile. I fight to look normal.
Crying in the shower has become the norm. I get in the shower, I stand there wanting the water to soothe the pain, just for a few minutes, and then you can’t stop it. You start to cry. You can’t control it so you give in to it. And then suddenly you stop and you breath in. Collect yourself and you fight.
Fighting pain is a lonely process. Crying in the shower is a lonely act. It can make you feel so empty and so alone. And right at that moment that is the last thing you want to feel like. But it’s OK.
I know I’m not alone in doing this.
Hiding this moment from the world can make you feel worse. But its part of coping. We all wish we didn’t have to do it but we don’t want to feel guilty for falling apart in front of people. Sounds messed up right? But it seems to be what we all do.
Well, it’s OK.
It’s OK to not be OK and its OK to not be OK in what ever way we need to – to live with this.
It’s a pressure release. If we didn’t do this we wouldn’t cope.
Don’t be ashamed of it.
Knowing what your day is to bring when you suffer with Fibro is hard. If you didn’t release then you would go mad.
It’s needed, it keeps you sane and it keeps you in control.
Just because we hide it doesn’t mean we are losing. The fact that we hide it and show a smile means we are beating it.
And the fact that we do this every day and never falter means we are stronger than Fibro. Never forget.