The first few months of 2023 have been remarkable for me. I am currently experiencing the longest “well spell” I have ever had since I became chronically unwell or the “big sick” as my Twitter friend sickgal calls it, some 12 years ago.
A lot has happened in my life since the “big sick” I have picked up a couple more conditions since my functional neurological disorder diagnosis; mecfs and Fibromyalgia.
I’ve had 2 children. My health began to decline during my first pregnancy, my second would only transform the decline into a steep one. This eventually ended up with me losing a job I loved and a 16-year-long career with it.
This completely changed my trajectory. It’s when I began to write, subsequently, Orkney Fibromyalgia Sufferer was born.
Unable to work I sought out a new opportunity. I decided that volunteering would be good for me in the interim. I volunteered at Voluntary Action Orkney for 11 months. I left to take up a post as a project assistant, initially for 3 months. It ended up being 10 and resulted in my application for the position I am still in now, administrative assistant.
What else has happened?
I lost most of my friends.
I took up roller derby and quit because I was being bullied by one of the only friends I had left.
Attended my first concert
Moved house
Survived the pandemic without catching covid
During the time since I became the “big sick” and now I have enjoyed a few “well spells” from memory I think that it’s three in total. Each one lasts a few weeks.
The “well spell” of 2023 hasn’t been like the others. In what way? Well apart from feeling different. There are a few other things that make me feel like this one is different.
I am keeping a record of everything that I have achieved this year and the list is long
*Walk from Dingieshowe to Newark (3 miles)
*Holiday to Glasgow
Housework. Lots and lots of housework including deep cleaning my kitchen and ironing
Taking my boys out
Lunch with a friend
Night out
Holiday to Sanday which includes taking long walks every day. One which was over 5 miles
Reading books
Writing again
Walking in the evening
Studying and attending courses
Volunteering 2 days a week
Helping out at bb sale
Several walks to the local shop
I am experiencing moments of Deja Vu. They are bizarre, to say the least. There have been times I have felt normal. Like a real-life healthy person. I no longer feel so fatigued and foggy that I feel like I am on the outside looking in. I used to feel completely disconnected from the world around me.
I used to have more months left than painkillers. The amount I have taken this year has been so little. This is proof that I am actually as well as I feel like I am
I used to roll my eyes at the words self-management and look on at people who seemed to recover miraculously with disbelief.
I was on my journey. Medication was all the NHS would offer me and I truly believed that I would eventually find a medication or a combination that would work. I had to do it for myself.
I wasn’t ready to hear about other options as I had none. Or that is how it used to feel
Now I feel like I am fully equipped with years of knowledge and experience under my belt
I don’t have a cure. But I do have a better idea of how to ease what ills me
I feel like if I continue to build on this “well spell”. I might get my illnesses into remission. I have pushed the pain as far back in my mind as I possibly can. I no longer hear my brain and body’s screams and cries for help, bed and rest.
It’s important to be aware that this may not last. Not to overdo it either. And to also prepare me mentally for tomorrow being the day when I wake up that it comes crashing down. Like a house of cards.
I am still in pain which is important to note. I am less fatigued. Undertaking activities don’t appear to be tiring me out the same either.
I am interested in hearing about your journey. Please comment on this post or email me
I lost myself. I feel like I have finally found my way back home. I was in a deep dark foggy depression. My head filled with a big black cloud. The fog has finally lifted it seems but is it just that I am in the eye of the storm?
In the eye of the storm
Orkney Fibromyalgia Sufferer 