Georgia: How fibromyalgia impacted my life
I was always very active and driven. I did a sport or activity every night of the week. I loved Musical Theatre and sang and danced almost every day. I wanted to pursue Musical Theatre as a career and was training very hard to get there. Unfortunately this did not work out as I would have liked it to because of my fibro. I am very lucky to have very supportive people around me. My family have been great and support me through the anger, the pain and upset, the career downfall, the mental health and the tiredness. It has had a massive impact on my life, but I refuse to let fibro define me. I push through my pain everyday so I can provide a good life for myself and any future children I have. I'm still the same driven, ambitious person that I was before but now I have to fight myself more to have the energy to get there.
Exercising during lockdown with fibromyalgia
When the suggestion of working from home was first mentioned in relation to Covid-19, I had no concerns. Due to having fibromyalgia, there have been several occasions over the years when I’ve had to do exactly that due to being unable to go into the office. Normally that would only be for a day or two – with the longest time I think being two weeks – and more often than not I would be sitting on my bed using the laptop and propped up with pillows.
However – this was going to be more than just a couple of weeks – so I had to consider the best option for working. My chair is a rocking/nursing chair and I was fortunate that we had a small folding table which was a good height next to it. With the help of a cushion I was able to get a fairly comfortable work set up – which while not perfect, was suitable for a day’s work.
How many times have you heard the advice to “pace yourself?"
The article below was writen by Stacey Lake regarding her fibromyalgia management and highlights a new audio channel which her wife and her are running.
It’s recommended to Fibromyalgia warriors to do 20 minutes of activity and then rest. However, what nobody tells you is how long to rest for.
There’s no hard and fast rule for this, unfortunately. I know that is probably not what you want to hear, but as with most things concerning Fibromyalgia, nothing is certain. No two of us are the same and everything depends; how your pain is on that particular day, how your fatigue is, what your circumstances are, how your mental health is, whether you need to do dinner, pick up the kids, go to work, walk the dogs, do some chores, even something as simple as taking yourself to the toilet or turning on a light. On any given day our abilities vary and that is one of the most frustrating things about this disease in my opinion. Luckily, we live in a time where help can be, quite literally, at our fingertips.
Corona Virus and Fibro Video
Please find below our recent video about coronavirus and fibromyalgia. More info @ www.fmauk.org/coronavirus
Corona Virus Information
Our staff are continuing to work from home and as such our shop is not sending out orders. However we are still sending out information resources. These can take up to 3-4 weeks under the current circumstances.
Covid 19 Vaccine
With a current rollout of the Pfizer / Oxford vaccines across the UK, as well as others awaiting approval, people with fibromyalgia may be wondering about when they will become eligible for it and whether there are any consideraritions for them. Our advice is to follow your GPs instructions and obtain the vaccine as soon as you can.
Your GP will direct you appropriately and having the vaccine is the ideal way to avoid having covid on top of fibromyalgia or lessen the severity of it if you did catch it. There are no fibromyalgia specific reasons to delay having the vaccine but individual circumstances will dictate when you receive it. More info on the vaccine.
Info about risk from Corona Virus
Let me start by acknowledging fully that Coronavirus and the disease COVID-19 are quite possibly the most important and immediate health issues we have ever seen. It is wholly understandable that everyone needs and wants to ask for help, to discuss and to consider everything about the issues that we are facing.
On Facebook groups, online forums and other channels there are plenty of opportunities to share support and information. However, there tends to be no specific health care professional knowledge or experience there which is in any way deeper or more helpful than appears elsewhere.
Items that are being pasted on these channels from Facebook and elsewhere are often incorrect or even worse dangerously so. We have seen people advertising producs based on false information relating to fibro and this virus.
FMA UK Statement on the recent BBC Panorama documentary
Regarding the disturbing panorama programme last night – https://www.bbc.co.uk/iplayer/episode/m000g6rz/panorama-the-million-pound-disability-payout
FMA UK have worked to improve training content that people working at the DWP use when considering people that are diagnosed with fibromyalgia. Therefore, we are shocked, dismayed and angry that there appears to be a culture of intolerance towards people with disabilities and specifically fibromyalgia. It certainly explains some of the stories that we receive on our helplines about people being mistreated at assessments. To hear from Charlotte within the DWP talking about the "cynical attitude" and them "not being empathetic towards certain illnesses." However, it was really shocking to hear comments like "another claim of fibromyarse." This is not acceptable on any level and is clear discrimination.
We would ask that the DWP respond to this mistreatment of people with fibromyalgia and reassess how training is applied so that people that are diagnosed with fibromyalgia are not dismissed out of hand before their individual situtation is considered. We are not looking for special treatment but we do expect to be treated fairly and assessed with compassion.
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Highlights
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- National Helpline 0300 999 3333 (10am - 4pm Mon - Fri)
- Benefits Helpline 0300 999 0055 (10am - 12pm Mon, Wed and Fri)
- Complimentary information booklets for doctors and other professionals (fully referenced)
- Books and videos
- Website Contacts with legal specialists
- Conferences
- Local support group and helpline contacts
If your Health Care Professional needs some education in fibromyalgia you can request that an FMA UK Health Professionals Pack is sent out to them. All we need is the name of the Health CareProfessional and the address of their practice. We will then send a pack to their surgery addressed from us to them.
You can request a medical pack using this form.
You can find a Support Group near you by contacting the Regional Coordinator for your area. If there does not happen to be a support group near you then maybe you can join with some other members and set one up. Support groups provide a social benefit as well as the opportunity to share tips on coping with fibro. They come in all shapes and sizes and we are often told how they have helped people.
