Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!
Diagnosis: Fibromyalgia & a number of other conditions including depression, anxiety and PTSD/C-PTSD
Age at Diagnosis: I was 16 when I was first diagnosed with depression, and 25 when I was diagnosed with fibromyalgia, though I’d experienced symptoms my entire life. The other diagnoses came in my late twenties.
How are you currently treating your condition?
The fibromyalgia diagnosis was a crucial point in forcing me to realise I needed to care for both my body and mind. I’d already lived with depression since I was a child, but until I started learning more of fibromyalgia, I didn’t realise the extent to which diagnoses could impact on each other.
I take medication to help with the different symptoms like physical pain, IBS, gastritis, low mood, and anxiety. While medication helps, for me I’ve seen the best turnaround in my overall health (and life!) combining that with changes to diet and lifestyle. I grew up eating mostly fresh fruit and veg from my grandad’s farm. When I migrated, I forgot all about it and allowed myself to be influenced into the world of processed foods, fizzy drinks, and high sugared foods. I turned everything upside-down, went back to basics (fresh, healthy foods), trying to limit processed foods, and made hard lifestyle choices at a time when I was most ill. I started physiotherapy. Returning to work was crucial, in that it forced me to get the only exercise I could then manage with my high pain levels. That helped. I lost weight, there was less pressure on my joints and muscles and overall I started feeling a lot better. The mind part can be tricky, but when you start benefitting from better physical health, I think it’s impossible for that not to impact on your mental/emotional state. I started engaging in talking therapies, mindfulness and generally tried to be more open about ways of thinking and being. Once all this happened, I was in a better place to work on my non-existent social life. This can’t be left out. Nope, non-negotiable. Life with chronic pain can be isolating, and we often forget how this can affect our mental and physical states. Trust me, this package still works!
What are the biggest challenges you have faced since your diagnosis?
Self-judgement; other people’s non acceptance or lack of understanding. Stigma, and discrimination; Issues related to invisible disabilities. Things like, when I don’t have my walking stick (tossed it at the back of the closet!) and on the train I’m either having to stand when I’m feeling terribly unwell or feeling pressured to give up my seat to someone else whose disability is visible. Or people constantly commenting on why I take the lift when I climb the stairs.
What are your favorite tips and tricks for managing everyday tasks?
The tricks I use depend on what’s going on the day. Pain issues while I’m out or busy – Ginger chews (also used for dizziness & IBS), ginger tea, light stretches and bottles of my home-made raw juices; Pacing (do what you can, in the way that you can manage best), challenging thoughts (I do so much better when I remember to stop over-analysing, stop being so self-critical and try to look at the whole picture. For example, I’m now less lightly to get anxious because someone has been awful- I try to think of what’s going on for that person. Not always easy when one is in pain and dealing with a slew of symptoms but it helps). Having a change of environment (a 5 minute walk away from my desk or flat even helps). A bite-size conversation with a friend (even via text on my lunch break can bring a change of perspective and improve my day bucket-loads!); Laughter (preferable shared).
How do you manage to keep facing forward every day?
I remember yesterday when I didn’t think I would make it or be here today; and I am still here, plodding on. If I did then, I must be able to press ahead to tomorrow. Every day, no matter how bad, is experience. Tomorrow absolutely has to be better.
If you could go back to diagnosis day and tell your past self one thing, what would it be?
Not to worry so much, it won’t be easy but things will get better. Not by anyone else’s hands but yours.
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