“If I decide I want to go out because I’m having a great day, I have to plan the next day around the fact that I know that it won’t be a good day.”
Today’s story is from Brianna, my daughter.
When were you first diagnosed with Fibromyalgia?
What was your life like before you first fell ill with FM?
I don’t really remember.I was 13 or 14 when I got diagnosed, and I’m 19 now, so most of my formative years have been spent managing the condition.
What do you miss the most since having FM
Being able to just go out and do something, like a night out, without having to factor in how many days afterwards I’m going to need to rest to recover from it. Or being able to tell someone I could go and do something with them, and know that there was a 95% chance I wouldn’t get ill and have to cancel, as opposed to it being likely that I would get ill and have to cancel.
Describe your worst day with FM
On my worst day, I can’t get out of bed. It’s like my bones are made of cement and feel really heavy, and every nerve ending is hypersensitive so it takes a lot of effort to move and it hurts a lot when I do. My eyes will be super sensitive to the light too, so I can’t keep them open for long or I’ll get a migraine that won’t go away until maybe 2 days later.I struggle to eat without getting nauseous, and so I basically will just have a liquid diet on those days. And I’m exhausted, so the majority of my day will be spent falling in and out of sleep.
Describe your best day with FM
On my best day, I can do normal things, I can go out to a play or to a concert or for a night out. But it can never be a spontaneous trip with no consequences. If I decide I want to go out because I’m having a great day, I have to plan the next day around the fact that I know that it won’t be a good day.If I’m having a good day but I have something important that needs to be done the next day, then I can’t go out or exert myself very much on the good day, because I know it’ll leave me struggling for the next day.
What would you *most* like the world to know about living with FM
That it’s not in my head.Because they’re invisible illness’ and affect different people in different ways, people that don’t understand it, think that you’re making it up or overreacting. They don’t understand that as a result of the Fibromyalgia, I also have a heart condition, general and social anxiety, I had a year where I had a migraine for around 330 of the 365 days. They don’t know what causes it, which means it can’t be treated. They can’t predict what symptoms each person with it is going to present, so they can’t give out set ways to manage it.Some people may get more musculoskeletal problems, where others might have problems with their joints, and others may have problems with their organs. It presents itself differently in everyone, and just because someone may not be in a wheelchair, making their situation visible to you, doesn’t mean they aren’t struggling through a lot.
This dedication is part of Mike’s Camino de Santiago walk.
Read why Mike is walking 255 km for ME/CFS/Fibromyalgia.
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