Welcome to this week’s Spoonie Spotlight. Today I’m featuring Meg! Spoonie Spotlight is my way to use my platform to share the stories of others living with arthritis or an arthritis-related condition. The point is to share the realities of living with arthritis and to make others’ voices heard. (New posts every 2 weeks.) If you would like to participate, fill out the form!
What’s your diagnosis?
Fibromyalgia and Joint Hypermobility Syndrome
When were you diagnosed?
How long have you had symptoms?
So long. I have been in pain for so many years, it all blurs!
Have you been limited in any way from your illness? If so, how?
Yes, in everyday things – I have to think how much something is going to tire me before I actually do it.
What’s your story?
I have had back pains since the age of 6, when I jolted my spine on bumper cars. Had physio for a while, and then moved home a fair few times over the years – as I got older, the back pain seemed to get worse. Constantly went to the doctors, they would just tell me to rest up.
It wasn’t until I was working as a waitress and I’d do long days (8am-10pm), and one evening, I was in so much pain, I had to run off and vomit. It hurt to stand so much but my boss wouldn’t believe me about this pain I was suffering.
Went to the doctors in 2012, after googling and seeing Fibromyalgia as a possible condition I could be suffering with. I told the doctor this, they did blood tests then sent me to a rheumatoid specialist, who confirmed I had both Fibromyalgia and Joint Hypermobility Syndrome (I don’t get the bendy side of this, I get the pain!!!)
How has your illness changed your life?
It’s changed how I think. Everything I do? I have to work out if I can do it, or if it will exhaust me too much. I’m not overly social because I get achy really easily and in turn, tired. I have learnt that maybe I can push myself in other areas of my life, but not physically as I WILL pay for it. It’s not fun, but I’m trying to live with what I have, and that’s that.
What are your goals for the future? (Not related to your health)
I’ve just finished up my second year of university studying Television Production, and I am not carrying on to do a third year (it’s not compulsory).
The stress of assignments and whatnot has just exhausted me so much, and I kinda want to get out there and just start living my life. I am hoping I can get a job to fund my photography, and maybe further down the road, make that my full-time job. But we’ll see!
What are your goals for the future? (Health related)
Possibly try and do yoga. I tried it recently at home and it helped a little, for a while. So, I may buy a mat and just try that at my own pace.
Do you consider yourself handicapped or disabled? Why or why not?
I sort of consider myself disabled, but only when I’m talking to other people who have fibro or any other chronic pain or obvious disability. Like, to friends and family, I don’t? I just feel that even though they know I have Fibro, that because I can stand and do stuff that they’d think it’s silly that I would label myself disabled if I can still move about.
It’s not though. It does limit what I can do, and it’s a disability, just one you can’t physically see.
What would you like readers to take from your experience?
That any folks out there that have chronic pain – we have our bad days, but we also have our good days. We need to take those good days, to push on through the crappy ones.
We may not be able to live as energetically as other people, but we live in the way we can.
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