Fibromyalgia

My article, featured in the Orkney News.

“How do you accept being told you will be in severe pain every day for the rest of your life and there is no cure? “

“Hi, my name is Thora Allan, I am 38 and come from Orkney.”

“How do you accept being told you will be in severe pain every day for the rest of your life and there is no cure? “
Fibromyalgia

Don’t stress over the things which you cannot control or change.

Don’t stress over things which you cannot control or change.
Fibromyalgia

Article More Than Fibro newsletter – June 2021

Below is the article I had published in More Than Fibro’s newsletter, last month.

Hi, my name is Thora Allan, I am 38 and come from Orkney. In 2012, after 2 years of experiencing a gradual decline in my health, I was diagnosed with Fibromyalgia. It was a diagnosis I was expecting as I just knew from my symptoms that Fibromyalgia would be the cause but that didn’t make the diagnosis any easier to accept. I felt a small sense of relief as I now had a name for what I was experiencing and I wasn’t going mad, making it up or imagining it. But that small moment of relief quickly turned into shell shock. How do you accept being told you will be in severe pain every day for the rest of your life and there is no cure? I still haven’t accepted it; I don’t think I ever will. I don’t want to either as I refuse to let this illness define who I am.
I lost my job in 2016 because of Fibromyalgia. I enjoyed my job and had worked there for 16 years so this was one of the most difficult experiences of my life and became a very dark time for me. At the same time my friends began to slowly distance themselves and drift away because I wasn’t getting better. You soon find out people only hang around for so long before they lose interest and become fed up. People don’t understand the magnitude of a chronic lifelong illness unless it’s something they have experience of. I was alone, I had no friends with Fibromyalgia or other chronic illness and no family members either so there was nobody to understand or talk to.
I decided to seek out support and advice online and joined a few Fibromyalgia Facebook groups. There were no local support groups available for me to join or meet with so online groups were my only option. I then decided to start my own Facebook page “Orkney Fibromyalgia Sufferer.” In the beginning I did it for myself and it was a place for me to share my thoughts and feelings without my Facebook friends becoming bored or fed up with my constant sharing of Fibromyalgia related content but what I really wanted was for them to understand what I was going through. So I started a blog called “Orkney Fibromyalgia Sufferer” and shared my entries and I received positive feedback from friends and strangers alike. Writing helped me greatly – just getting my feelings out on paper made me feel lighter. It was like therapy to me and to find out it helped others too gave me a real sense of purpose at a time when I felt I had none. Whilst writing my blog I realised I was also passionate about others suffering from invisible conditions so I created a Facebook Group called “Invisible Illnesses Orkney” and the group has grown slowly but I’m happy with that. We are a close-knit group of people who share similar experiences and prejudices and it is a safe space for us all to communicate with each other without judgment. I’m particularly passionate about creating a support network in Orkney, not only for Fibromyalgia sufferers but for others with invisible illnesses too. We are a small island community with little access to services and there is nothing available specifically for Fibromyalgia. I have met so many wonderful people through the network I have created and it has cultivated in me a real need to continue building on that and become an advocate for Fibromyalgia and other invisible conditions in Orkney.
Recently I was fortunate to be introduced to Sharon Turnbull and More than Fibro. We are both keen to work together to increase the support and services available to Fibromyalgia sufferers in Orkney and the Scottish Islands. I am excited for the future as I know that, with Sharon’s support and guidance, we can make a real change in Scotland’s remote island communities.

Chronic illness, Fibromyalgia

2017 – My Year

After 4 years of suffering from 2 chronic conditions – CFS/ME and Fibromyalgia and losing my job because of it, I decided that 2017 would be “My year” I finally seem to have my pain under a little control, not huge amounts but better than it’s ever been since I became unwell. After 4 years or so of suffering from both conditions losing my job was not what I needed at the time, it made things a million times worse for me and I lost trust in my mentor/manager who I had blindly looked up to and admired for years and years. When the chips were down he wasn’t there. He kicked me when I was down. But now a few months on and with time to reflect. I realise how miserable I was at my work. My eyes have also been opened up to seeing people for who and what they are and that people are NEVER who they seem. Even people you think you know and people who you think are on your side aren’t. Hence the reason in December 2016 I decided 2017 was going to be different.

With January beginning I started to put my “plan” in place. Firstly I decided that I wanted to be my own boss (after the horrendous treatment I received when I was ill-health retired)

I did some research and business plans but none of it came to fruition. So my business ideas have been set to the side for the moment. Set to the side but not forgotten!

A sporting opportunity arose and it was just what I was looking for – Roller Derby. Derby has been so good for my overall health and wellbeing. I am getting adrenaline from it and it certainly has positively impacted on my health and life. Met a great group of lasses through it too. I feel really proud to be part of it. I managed to do 21 laps in 5 minutes the other Wednesday night so I am eligible to attend the Monday night speed sessions but I have never been well enough to do so which is upsetting but I have to look after myself. Hopefully, I will reach the 27 laps in 5 minutes which you need to be able to do in Derby amongst loads of other moves.

I went to Voluntary Action Orkney and enquired about volunteering opportunities. I managed to get a placement at the local Citizen’s Advice Bureau which I am really happy with. It is only for 3 hours every Tuesday.  I really enjoy it and it beats lying about the house all day.

Then I set my sights on learning to drive. It has been a slow progress due to my health not being the best at times. Really enjoying learning and I really hope I pass my test in the future. I am nowhere near yet. Only had 4/5 lessons and some practice with Baz my husband.

I have completed a marketing course. I will be doing a Personal Licence course as well as training on how to use the Sage Accounting program and in September I will hopefully be starting a Management evening course.

I had a fabulous weekend down in Inverness with Kelly. She treated me to a Spa day in Nairn and it was beautiful. There was a Hot tub outside, the sun was shining and the temperature outside was 20 degrees. I managed to squeeze in a training session with Inverness City Rollers. We had a lovely BBQ on the Sunday night before I came home. It was THE most perfect weekend that I have experienced in a long time.

Not bad for the first 6 months I don’t think. I am pleased with my progress. I have to keep pushing myself but at the same time, I need to know my limits and listen to my body more which isn’t easy when your mind is stronger than your body. I am happy with what I have started and what I have achieved so far. Although I feel exhausted and sore every day I still have to remind myself that I suffer from 2 chronic conditions and I shouldn’t be so hard on myself all the time. I have tasted a period of being well and now my health is up and down like a yo-yo. I just have to accept that it happens and it could just be a blip. It does stress me out the not knowing if or when my good health will return again.