Bleep Bleep Bleep… The alarm goes off and you almost can’t believe it, you only fell asleep about an hour ago. Peeling your lead laden eyes open, you gradually start to become aware of your aching, stiff and tired joints. Are they as painful as the day before? Has the flare up finally ended? Or am I facing a day of being employee and housewife, but with the added bonus of my body feeling like it has the flu? You rise. You take heavy pain relief, which makes you even more tired. You drink coffee. You tell yourself “it’s ok, I’m fine”.
A few years ago I got a sore neck and the odd aching shoulder, I was tired all the time and everyone laughed because I was always first to go home after a social gathering. I took myself off to the doctors thinking I’d maybe contracted some kind of niggling virus, or perhaps my flu jag hadn’t quite worked, and I was being attacked thanks to another Scottish winter. My lovely doctor was convinced it was neither and after a battery of tests and various drug trial and error situations, she diagnosed me with fibromyalgia. This was for sure going to have to be a google moment.
Typing it into the screen and coming across, at first, the NHS web advisory page it certainly did seem to fit my symptoms but I was struck by how so many websites seemed to think it was linked to the mind. In fact, it seemed like some were even implying it was all in the mind a sort of psychosomatic illness, “I wish” I thought, as I swallowed another handful of bone numbing pills. There was a tone of information and most of it was pretty similar. Fatigue? Sleep. Pain? Drugs. Anxiety? More drugs.
I couldn’t believe this was all there was to offer and I looked to the incredibly mad world of social media to see if I knew anyone else who was struggling with this agony. Apparently I knew loads, all with varying degrees of the same illness. Some who, like me, worked and just muddled through; and then there were others who were either home or wheelchair bound. All describing so many of the symptoms that I had previously felt but many also able to point me in the direction of online support and help.
I’ve tried the gym, yoga, meditation, watching my weight, alcohol intake and I’ve tried a million different herbal potions. At times these help and the gym especially gives me strength; but imagine the disappointment of knowing that, without warning, a gym session can also send a signal to the brain to flare up. It’s extremely frustrating.
I once heard someone say they don’t believe fibromyalgia exists, in fact if you try to get certain disability benefits it can’t be used as an actual registered disability; and yet the ramifications of this illness are very real.
The symptoms for me are as follows:
Joints popping and cracking
Sensitivity to hugs and human touch
Yup see… it sounds like the flu. I once heard the phrase “if you see a fiver in the street but you let it go then you have the flu”. Yet Fybro sufferers can feel like that daily and still go to work, manage the school run, cook the dinners, be sociable and simply exist like nothings wrong. When beautiful people in my life ask if I’m in pain, on impulse I usually say “no, I’m fine”. In fact on some days I’m so sick of my own voice I even say “yeah I’m good, great actually”, when the truth is that I’m so utterly exhausted I could hide under a duvet and cry. You feel like a moaning faced, crabbit burden and really like there’s no escape.
People have said to me “oh it could be much worse at least you don’t have (insert medical illness of choice) and that’s a terrible thing to have”. Well yes I’m sure it’s horrific, but are we so intolerant of the suffering of others that instead of being kind, we almost apply a notion of guilt? The other most used phrase I hear comes in the form of “oh my word you’re addicted to painkillers, you take them all the time”, now maybe that’s true I practically exist on them but it’s not because I’m addicted but really it’s so my wrists aren’t so sore that I can open the milk, to pour into the coffee, that keeps me awake… that kind of thing. So now you see why I quite often say “yup I’m fine, good, great, over the moon”!
Now don’t get me wrong it’s not always like this, I’m in the middle of a flare up that’s lasted over a week but I know it will end, and I know I can beat it. I’m loved, supported and cared for but the fact of the matter is the bills need paid, the messages need bought and the dinners need made. That’s life. If you’re suffering and you’ve landed on my blog looking for support then please take heart. Yoga, the gym and mindfulness has been hugely helpful to me. Try it. Speak to your loved ones and tell them that your not coping, yeah they may be a bit frustrated and they might not always say the right thing but they’ll want to see you better and you’ll feel more relaxed for being honest. If you’ve never told anyone about your condition be brave and ask friends, you’ll be surprised. Speak to your boss, get information to help them support you. If you’re at home and you’re tired, sleep. If your in pain with the cold weather, wear something cosy. If you need pain relief take some.
As for me I’m off to get through my day. I’ll smash work, I’ll try some exercise at home, I’ll get to aldi and I’ll make the mince…. How will I be tomorrow? Maybe I’ll be shattered or maybe, just maybe, it will have gone completely and I really will be “fine”.