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

Whitemill Bay, Sanday, Orkney Islands

Located on the north end of the island. Whitemill Bay is my favourite beach in Sanday. All of them are spectacular, but this one is my absolute favourite. Breathtakingly beautiful, with its white sand and clear blue water. It could easily be mistaken for a beach in Greece.

On Tuesday we all went to the beach. After having just spent 3 busy days, crammed with activities and outings, I wasn’t in the mood to go anywhere. Let alone somewhere like a beach. Which would mean hauling – towels, trunks, sunscreen, change of clothes, buckets and spades and plenty of food for the boys to eat and gathering it all up and taking it home again. I would rather have stayed in bed, resting.

I peeled myself out of the bed and started gathering all the things we needed to take with us, including my notebook. I’d planned to sit by the sea and write my presentation that is due this coming Friday. Instead of doing what I had planned, I ended up taking photos and videos instead. I gathered hundreds of photographs. Whitemill is such a peaceful place to be. I wandered along the coastline listen to the waves gently lapping on the shore. It was so peaceful there. I felt lighter after a short walk. The stiffness had eased a little and my mood was lifted. I felt refreshed and calm. I sat down on the bench and closed my eyes. I could feel the stresses and strains over the past 18 months slowly leave my mind and body. My brain was no longer going 100mph. It was calm and still, living in the moment. Drinking in the beautiful surroundings.

Back to work tomorrow. I have set aside the whole day to work on my presentation, which I must deliver at 11 am on Friday. I absolutely hate doing things last minute. I like to make sure that I am always prepared and well-rehearsed. I can wing things if I need to but this is really important to me and I don’t want it to be a disaster because I was ill-prepared.

It’s 0401. I must try to get some sleep soon, Getting up and out of bed, tomorrow is going to be a challenge. My pain level is high after our short holiday in Sanday. The pain and fatigue are worth it though. It was nice being able to spend some quality time, just the 4 of us. It’s made me realise that we should do it more often.

“Spending time with your family is important. No amount of money or success can replace it. Get outside, go places, go on that trip. Create memories with the ones you hold dear”.

Below is a video of Whitemill Bay, which I created on TikTok ↘️↘️↘️

vm.tiktok.com/ZMdtAoasN/

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.