It was recently two years to the day since I woke up and couldn’t get out of bed. A summer that led to me being diagnosed with chronic pain and ME/CFS with possible strains of Fibromyalgia.
Two full years. I can’t quite believe it.
I felt the date coming, I’d put it in my diary a while back because I felt I should mark it in some way. Instead I ended up in bed with norovirus so it sort of passed me by (in the way that anything does when you find yourself with vom in your hair) but I have reflected since then and here’s what I think about two years of pain.
I think I’m doing bloody well.
It’s still a struggle to live with every day but it’s a struggle I think I’m winning.
I might not have any idea when or IF I’ll ever be free of this or have much guidance on what may help me feel better but in some ways, the two year anniversary has given me even more impetus to find things that will help give me more energy and less pain. It’s the same as the ‘laugh or you’ll cry’ theory in that if you don’t find the positive in a situation you’ll never get out of bed again. So, in this spirit of accepting it and showing gratitude because that is a healthy thing to do, here are five things I have learned about myself and my life with a pain condition.
- Despite pain for the past 743 days I am cheerful. I haven’t hidden myself away or got depressed. I have sad days which I’ve shared on here before but generally I’m fairly resilient to the emotional stress daily pain brings with it (and this wasn’t the case even a year ago). This is pretty good going. I am 100% proud and grateful for the resilience I have discovered I have despite this shit storm I go through each day.
- WORKIN’ 9-5: I run the biggest department in the company I work for and I think I do it pretty well (not an ego trip, but it’s totally OK to pat yourself on the back every now and then!). I manage my bad days pretty well, I am still able to work really hard and most importantly I think I do good stuff for my team, for clients, for the company. I am still as ambitious as I ever was if not more so (although I’ve learned that I, like everyone, have limitations and can’t save the world in a day).
- FRIENDS AND FAMILY ARE EVERYTHANNNNG: I have learned who my huns are AND THEY ARE AWESOME. I am so grateful for the love my family have shown me every last day of this journey. For the Facetimes, the hospital visits, the sharing of articles to wild and wonderful supplements I should try, the days friends came to see me when I couldn’t get down the stairs. This, always this. What’s the saying? I’d rather have three pounds than 300 pennies and the same goes for friends. I have some really important, lovely friends who have been super supportive even though they have no idea what’s going on or how to help (neither do I TBH!). They love me anyway and I don’t know how I’d have found any resilience without them.
- FEELING LUCKIER THAN MOST: I’ll never forget my day at the pain clinic finding out if I should join a pain management course or not. It was then that I realised the huge scale of pain that exists and where I was on it. I soon realised that if you’re not in a wheelchair or don’t have a carer you’re doing well in that clinic. I have days and sometimes moments within the day where the pain takes my breath away but it’s now manageable. I’ve gone from getting through the pain in 15 minute slogs to getting reminded of it day by day and as long as it keeps moving that way I’m (sort of) OK with it.
- LEARNING ACCEPTANCE (AND COUNTERACTING THIS WITH HOPE): I was told my pain condition is a bit like tinnitus in your brain, i.e. your brain doesn’t know when to switch off pain signals and fires them randomly. I was also told to practice acceptance. That I should stop saying ‘when I get rid of this…’ because I might never, and that would be hard to cope with. So, with this ringing in my ears I am slowly learning to accept. Not 100%, I’ll never let go of the hope it’ll sod off but I am not as angry or as despairing as I once was.
- I’M ON MY WAY TO BEING AN ALTERNATIVE THERAPY NINJA: Not quite, but I know more now than I ever knew about nutrition, alternative therapies, supplements, meditation, mindfulness, balance, pacing yourself… all the stuff most humans need to function well. This is a good thing. I’ve now got skillz. In the next few months I have lots of potential solutions lined up to try – watch this space for more.
- I’M IN A COOL ILLNESS GANG AND I LIKE IT: Along the way I have met some seriously inspirational people including Rachel from PainFreeKitchen who I had the loveliest cuppa with in Chicago. She’s a Fibro survivor and is now a fitness fiend. I love her story and her energy. Also Faye Dempsey, who shared her Fibro story with the Liverpool Echo. I love her honesty, especially around illness and body confidence (something I’ve struggled with in the last few years). And Rebecca, who I’ve not met yet but who I hope to get a consultation with after reading her story in What Doctors Don’t Tell You. Her recovery (in as much as you can) from CFS and Lyme disease is pretty epic, and her training as a nutritionist is nothing short of awe-inspiring. I hope to meet her soon.
All of these things keep me going and give me hope and most importantly perspective. I might have something that never goes away but look what a good job I’m doing of what I have. How bloody lucky am I?!
Here’s to another year of making strides. I can’t wait to see what I write in 12 months’ time.