Our Fibro Warrior this week is Jen Edwards aka thewonkyjen from Berkshire UK. She lives with her partner, and spends a lot of time with her sister, as they look after each other. She loves pets, and has owned a number of cats, but currently can’t have any pets in her rental. She says that as much as she loves pets they seem to love her even more, and often more than she feels people do. She also loves reading, crochet, arts & crafts, playing poker and binge watching TV. She was diagnosed with Fibro about 4 years ago at the age of 26.
She’s been off of work for a year and a half now, due to her illness, and doubts she will be able to return. She says she used to be an administrator who managed a large number of accumulative tasks as well as a busy inbox. She misses work and finds not being able to work distressing.
“I don’t know what to do with myself when I’m not busy!”
“I’ve sort of let myself fall apart since work stopped – my frame of mind was very unhealthy and having nothing to take my thoughts away from the pain, having no deadlines and little to no motivation took its toll on me. 2016 is about engineering a better lifestyle for myself and gaining some peace of mind…if I can’t go back; it’s definitely high time I moved forward.”
What lead up to your diagnosis?
My sister and I were referred to a rheumatologist who identified a large number of continuing problems no one had previously investigated on our behalf. Before that we were only ever treated for the immediate symptoms rather than comprehensively assessed. It was a huge relief to discover that we weren’t hypochondriacs, nor were we mad and it could be definitively proven that we were not drug seekers and weren’t “putting it on” either.
How did your family initially handle your illness?
It’s been interesting. Our mother died when I was 8 and my sister was 5, although we were told what killed her…it took a further 11 years for us to be tested/diagnosed and the implications of our illness were never really explained until I went on a kind of letter writing campaign and got us both reviewed by a number of doctors.
We had so many unexplained problems that we had no idea how to address, our grandparents worried and our Father doubted the veracity of our claims as we’d always complained about problems that everyone thought we were either making up or over exaggerating.
I’ve learnt everything I can on our illness now and it continues to be devastating that neither doctors nor my family truly believe the facts I have discovered. They all believe that I go looking for symptoms because I want attention…only my boyfriend bothers to listen and research with me…he knows that actually I’m very reserved and will fact check everything before I bring it to my doctors. I also have a very good GP who respects me and works with me. Without my doctor and my boyfriend’s support…I’d be ignored and insane by now.
What do you feel is the most challenging aspect of Fibro?
Pain/energy management as well as the psychological battle. It is hard not to despair when you can no longer remember what it feels like to not be in pain, as well as knowing that you are wholly dependent on opioid drugs, completely addicted and yet be aware that it is genuinely the best regimen out of a very stark list of options.
Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
I have Vascular Ehlers-Danlos Syndrome, Fibromyalgia is one of its component symptoms. I also suffer with reflux, poor motility, gastric stasis, frequent joint dislocations/subluxations, poor proprioception, brain fog, muscle tearing, muscle spasm and tachycardia. Overall it’s rather hellish to be me, but never dull…I think I’d quite like dull.
What (if anything) have you found/ done that has improved your symptoms?
Finding the most effective drug regimen is key. As is learning your limits and pacing yourself accordingly (still working on that). Regular physio, light exercise, hobbies that you can immerse yourself in, regular catharsis (I choose angry music)…and mindfulness. Oh and drink at least twice as much water as a regular person should and DO NOT drink alcohol.
How open are you with friends & family about your illness & symptoms?
I’m open about everything. I am cursed with a rather high IQ and very limited emotional intelligence – on the scale where a score of 32 is autistic, I’m a 31 – which means I respond to people and situations in ways that are closer to the responses of an autistic person than an “average” person. In short, educating my family and friends not only about my illness but also my behaviours is key – I try very hard to be mindful and consider how I react/respond to people and keep an open and honest dialogue at all times. That way even if I “get it wrong”, the people in my life worthy of my care are able not only to understand, but they also support me.
What is the best advice you’ve received about Fibromyalgia?
Lots of fluid and do a daily bit of very light exercise for a short period of time over one or two massive workouts a week. I like to think of my exercise regime as the metaphorical equivalent to the 5 light meals diet vs. 3 heavy ones.
What was the worst advice that you followed?
Push yourself through the pain. Don’t do it people! On the other side of pain is just more excruciating pain.
What is your favorite way to cope with your life as a spoonie?
I love reading, I’ve also been much happier since I began my bullet journal and started using mindfulness apps and maintaining a light tai chi routine.
To be honest, the biggest thing that helps me is to be doing something for someone else – making people laugh, giving gifts, making cards/presents, talking them through tough times – or just giving that hug that they didn’t even realise they needed at the time. It doesn’t help my pain, but somehow it makes life worth the pain.
What is it that inspires you to keep going, despite your illness?
I still have to pinch myself and work hard to believe that I can inspire other people…but it’s a bit of a drug in itself. I’ve been credited as an inspiration a couple of times now and I want more…if I could be the person who helped just one person keep their head up and their feet moving ever onward, then it will all have been worth it. That and the fact that my sister needs me by her side and I will never leave her until that day where one of us taps out.
What is one thing you’ve learned about yourself since your diagnosis?
I’m rather belligerent.
What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?
Keep at it, don’t lose faith, never lose hope and never let anyone try to make out you’re crazy. Even though we lose so much to this illness, the key is to remember is that we can still have a happy life – it’s just going to be different.
Is there anything else you’d like the readers to know?
I’m on twitter as @thewonkeyjen (yeh, I really did spell ‘wonky’ wrong)…if ever anyone needs to rant, moan or just to talk to someone who gets it – my DM box is open to all.