Ticking time bomb. My life with fibromyalgia
I’m trying to keep going, but I’m struggling.
For four days straight I haven’t been able to stand or walk properly. I can’t straighten my left arm and I’m getting dizzy spells which mean I can’t drive to the GP to register with them so I can speak to someone.
Everything is getting on top of me and causing a serious flare up of my fibromyalgia.
I can’t afford this to happen this week as it’s Teddy’s first birthday. I’m expected to take him on a fun day out this Friday, to plan and host his party. I can’t even think straight. Let alone make decisions for a large group of people.
I’ve had to take days off work. I hate doing that as I’ve gotten used to pretending I’m not ill because I don’t look disabled. Having to have so many sick days just brings it home that I need to take more care of myself when I can.
I can’t find my walking stick because everything is still in uproar from the house move. So I’m hobbling around like a woman 40 years older than I am. Holding the walls and the kitchen tops to move about and cook dinner for my family.
I’ve spent more time in bed this week than out of it. But I can’t get comfortable. If I lie on my right side, my neck and shoulder hurt too much. If I lie on my left side I get stabbing pains in my hip. So I Lie awake all night tossing and turning, then passing out at dawn. Weirdly it seems the best time for me to fall asleep!
All of the Doctors I’ve seen have been little help. One of them even told me to just live with the pain.
I can’t pick Teddy up this week and he’s getting frustrated because he doesn’t understand why. He hangs off my legs and cries. So I end up clambering to the floor just to hug him so he isn’t upset anymore.
I’ve spent days on the floor on maternity leave. When my fibro has been so bad but I’ve had no one around to help. Teddy is a whirl wind so sometimes it’s just easier to stay on the floor so I can play with him.
At the start of 2014, I met my husband. Only months later, a year in which we should have been spent having fun and exploring life together, our lives became marred with hospital visits, tests and months of being signed off work, unable to get out of bed most days.
I was eventually diagnosed with fibromyalgia. A little understood disability, made prevalent by Lady Gaga (thanks gal). Her Netflix documentary is a window into the world of a fibro sufferer. Although I can't imagine most can afford the interventions she is so lucky to have at hand.
Personally, fibromyalgia manifests itself in my lower back, left hip, right shoulder and neck, hands, wrists and feet. A long list, right?! That's my daily battle. Then, I get the 'ad hoc' pains. Pains that appear out of no where and can stop me being able to walk, or straighten my arm, or speak. But it can appear anywhere for sufferers, without warning, and last any amount of time, long or short.
It affects my cognition, in something aptly nicknamed Fibro Fog. It's like trying to find the words you need or want to say by sifting through black treacle. Dean is used to this now, but I imagine it gets quite frustrating for him at times. I usually say wrong words for things and don't even notice. He has become really good at understanding what I mean! I think he knows me better than I know myself sometimes.
The most frustrating part of having this disability is that I don't look ill. I went through a time at work where people thought I was pretending to be ill. I even have a disciplinary on my file for a period of sick leave a few years ago when I was going through diagnosis.
I also don't know when I'll have a bad flare up. It can come on over a few days or come on suddenly. This means I often cancel plans too but I have some amazing, understanding friends. This is my ticking time bomb.
I'd love to connect with other fibromyalgia sufferers and hear how you manage your day to day lives, and your flare ups. What helps? What doesn't?