Chronic illness=chronic effect on your life
“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? “
Finally! I have learned not to stress so much. I had a wee panic last night. But managed to get up this morning with the right attitude. Grabbed the bull by the horns and kicked its arse.
I had a little stress afterwards about what I could have and should have done. Then I realised…. There is absolutely no point in stressing out about it now. I can’t change it. It’s happened. It’s past. What I can change is my attitude and reaction towards it. I am choosing to remain in the positive zone. It serves me far better than the criticising zone.
What will be will be. I’ve done my part, given it my best shot. And if it doesn’t work out? Oh well? 🤷♀️ There could be something better waiting around the corner for me. Maybe this isn’t my time? Whatever happens, I am confident that my time will come. I just have to be patient. 💜
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 ↘️↘️↘️
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.
