My name is Brett Alexander Robertson, recently I started a Facebook Suport group called “Bury St Edmunds Fibromyalgia” a condition I’ve suffered with for around 5 years now.
Thinking there would only be a few people join, I had a piece in the local Bury Free Press to raise awareness of the group! To my surprise locally I’ve reached nearly 200 people who suffer this condition, I was shocked? In the time of setting up the FB page and the BFP paper article about my group, I also heard about a film / documentary called UNREST, it covers Chronic Fatigue type illnesses like M.E. CFS and Fibromyalgia.
I contacted the film company in America and asked if it could be shown in my local town Bury St Edmunds, Abbeygate Cinema, they got back to me and said “why not!?” I was shocked again! But in a good way this time.
I’d never heard of the condition Fibromyalgia before I was diagnosed. It’s a debilitating illness that at worst affects the whole body with immense pain and exhaustion.
I was working at Marlows at the time, a full time job and running two business, one was photography I took up after my heart attack ten years, previous and one was an invention I had come up with for the tattooing industry.
I was closing down the photography as business had slowed due to the credit crunch, but the tattooing industry at the time was booming! So I wanted to push on with that. I was selling and dealing with the largest names and companies from all over the world with my new little product/idea it was called “The Mantle” a tattoo machine stand that held tattoo machines in a way that was safe and clean and very hygienic.
During this time I was having troubles with activities as in work work work full time and starting up this new business, I found out the problem was my heart again, I needed a stent!. So it was off Papworth Hospital to get that sorted! It was an extremely stressful time for me as I was having 10 to 15 angina attack’s daily for three weeks waiting for the operation, but it came and I felt better than I had done in 20 odd years.
The stent had fixed a tortured artery near my heart they said I was probably born with and that was the cause of my heart attack 10 years previous!
Wow I though! A new me with boundless energy! I recuperated and went back to work at Marlows and carried on building my Mantle stand business I called Grey Circle Ltd. I came in the top 3 for Bury St Edmunds start up business of the year awards 2012, that’s how well I was doing. But, 3 months or so after the stent I started to feel tired, unexplainable exhaustion and cramps.
Legs felt like they were trying to walk in porridge, I’d struggle to get through the day and then my building the Mantle tattoo stand slowed as all I wanted to do after a days work was collapse in bed totally exhausted. I kept going to see my doctor thinking it was something going wrong with the stent, but he had me tested and found that was fine, this was something else? He said, “I think this is something called Fibromyalgia!” I’d never heard of it. He said I’m going to send you for a diagnosis see what they say.
I went to the arthritic clinic to be diagnosed, I didn’t know what to expect so I just sat there explaining how I’d been feeling, the lady doctor there was prodding me all over the body, not saying a word just, ummm’s and ahh’s. Then she went to my notes and started to flick back through them, she stopped and look at me and said “Mr Robertson you had a stent fitted a while back?” I said yes it all went very well I felt fantastic! She then said that was the trigger that caused my fibromyalgia.
I was diagnosed in 2013, I was told to take life slower, she advised me to only work part time as full time will make the condition worse, I was told this will be with you now for the rest of your life, there is no cure, I was totally knocked sideways.
I lost my job at Marlows a place I loved working at, I tried so hard to make the Tattoo Mantle work but sales were too slow to make a wage. To build this Mantle Tattoo Business I sold my flat three years previously to pay Patent costs and my bank equaled the amount I put in as they also could see the potential in my product.
But sadly in 2014 I had to admit to myself I had no longer got the energy it takes to build a business from the ground up, it was killing me, finally I had to go bankrupt, I lost the lot. For the first time in my life I was beaten, so down so fed up with myself. But, I started to learn about fibromyalgia and soon realised I was pushing myself too hard within an illness that you just can’t do that with.
It was a hard time for me having to give up any hope of being the old me anymore. It’s like a grieving process, I used to play drums, I did very well during the times of being in bands but I can’t hold the sticks anymore. I played congas but I can’t do that anymore due it it hurting my fingers and hands. I can’t make plans for the future as I might not be well enough on the day, life is like that now, I do what I can but have to pace myself to get through, that’s what us Fibros have to do…
Living with Fibromyalgia day to day is now a way of life for me and others I’ve now met through the group I started on Facebook. We all struggle on a daily basis just to do the easiest things. We look fine but the illness is a hidden one, underneath the smile is pain exhaustion and frustration. These illnesses seem to be so misunderstood, we get called lazy, you loose friends through this as life becomes hard to balance and cope with, loneliness for some is awful, It was while in bed with a really bad flare up that I thought of seeing how many people I could find locally that had this condition.
Two months on and I’ve found nearly 200. They are all finding the page supportive and helpful and they are all saying why hasn’t there been a page like this before? I guess that’s the inventor in me lol. I found a part time job early mornings the best time of my day working at the local motorcycle shop Krazy Horse Customs. I was their motorcycle valet, a dream job for me I love my bikes! I worked there for 3.5 years them knowing I had health issues, but sadly during the last Fibro flare up I realised the company was getting too big for me. I couldn’t keep up as there were so many bikes to clean and look after. So now I’ve started up my own business, again part time motorcycle valet, calling myself “Wheelie Clean Motorcycles” it’s the pacing myself thing again due to this illness fibromyalgia. You have to learn to live with it but try not to let it rule your life.. it’s not an easy life for any of us Fibros.
I mentioned at the beginning that there is going to be a showing of a film at the Abbeygate Cinema.
The date of the film screening is Tuesday 12th of December at 5.45pm. It’s being shown in the bigger screen room 115 seats of which nearly half the seats are booked, so if you or anyone you know would benefit by seeing this film to understand and learn more about this chronic fatigue type illness please pass on this information to them..
Thank you for reading! Take care and all the best, Brett.