More and more I am noticing that people sometimes dismiss my fibromyalgia and don’t believe that I am actually ill. It can be frustrating, especially as I am trying my best to be well – yet when I am ‘being well’ it seems difficult for people to believe that I am sick at all.
Here are three examples:
But you do loads of exercise, how can you be in pain or tired?
I don’t know about loads because I’d like to do more, but yeah, I walk for an hour every day, I do stretching and yoga daily and 3 times a week I do some form of aerobic exercise. I have also started doing some virtual races (although I will be walking not running them). Am I in pain and tired? Hell yes. I have to listen to my body to ensure I am in a position both physically and mentally to exercise, I have to manage my heart rate so that I don’t burn out and I have to push myself past hip, knee and leg pain every time. It’s mind over matter and very hard to keep up consistently, but I do it because I know that it aids my recovery and improves my weight and physical fitness levels, making fibromyalgia easier to manage day to day.
But you don’t take that much medication, so you can’t be that sick!
I take a number of supplements specifically recommended for me and my condition:
- Lamberts Turmeric 10,000 mg
- Lamberts Acidophilus Extra 10
- Lamberts Multi-Guard ADR x 2
- Holland & Barrett Omega 3 Fish Oil Capsules 1200mg x 2
In addition, I take 2 medications on prescription:
- Amitriptyline 50mg
- Ramipril 1.25mg
That’s just 8 pills a day, or 56 pills a week. Plenty thank you very much. I do not take regular pain medication, not because I am not in pain, but because I prefer to find alternative ways to relieve pain such as TENS machine, heat pads, meditation, hot baths and so on. Does that make my pain any less real? Does that make my pain mild? No, it just means I am finding long-term ways to deal with my condition.
But you work full-time, you must have very mild fibro to hold down a full-time job!
Yes, I do have a full-time job, I work as a technical writer. I also do voluntary work for The Cinnamon Trust and the ISTC. I am also a mum to a very lively and equally busy 10-year-old]. How do I do it and have fibromyalgia? Well mostly because my full-time job is home based, which means I do not have to commute daily (which is the thing I find the hardest) and it also means I don’t have to spend an hour getting myself ready for being out in public.
Could I work full-time in an office? Probably not. I adapted my career around fibromyalgia. I had to get out of the stressful career I was in and move into something less stressful and more flexible. I used to be a further education teacher, teaching unemployed adults maths, English and IT and it was hard damn work on my feet all day and managing large classrooms. Yes, I work full-time, but I have had to change a hell of a lot about my working environment and situation to make it work for me with fibro.
Do you find people dismissive of your fibro, just because you are up and doing instead of wallowing in your condition? Do you feel upset when someone suggests that your fibro is mild or not as bad as theirs when all you are doing is getting with life with as much gusto as possible?