A day in my life as someone diagnosed with Fibromyalgia

by | Nov 19, 2023 | Neurodiversity | 0 comments

What’s the definition of Fibromyalgia

The NHS say that Fibromyalgia, also called fibromyalgia syndrome (FMS), is a long-term condition that causes pain all over the body.

The Collins dictionary says that it is a rheumatoid disorder characterised by muscle pain and headaches and a chronic condition characterised by pain, tenderness, and stiffness of the muscles and joints along with fatigue and anxiety.

So why do some people still believe that Fibromyalgia does not exist and it is all made up in our heads. Hopefully, over time that will change with more awareness and education but until then it will be a misunderstood condition by many, including some medical people and Government Departments. I share this from my own experience.

Let me tell you about today living with Fibromyalgia

So I woke up at 8am and found that my muscles were tight and in pain and I had a severe headache. I was still very tired even after 7 hours of sleep and as I started to get up I felt a wave of pain through my body, from my head to my toes.

I started my stretches and breathing exercises as advised by my physiotherapists, (there have been a few), but this was not working.  I called my husband to help me out of bed. Once out of bed, I had to walk to the bathroom and that was just pain in my joints and through all my muscles. Approximately two hours later, I was ready to start my day with breakfast. A slice of toast with jam and a cup of tea followed by my fibromyalgia meds and a top-up of painkillers to help me through. My husband kindly made my breakfast for me but to be honest he has to do this most days.

It is now about another hour into the day, and I am realising that not much is going to happen today. The meds are not working, I am going into what is called a fibromyalgia flare and I slowly get myself to the sofa to lie down. It is hard but I have to just accept that today, no work for the business will get done. Although, if I am honest, me being me, I did do a little on my phone on social media, supporting others and tagging my friends in my posts.

It really is hard when you have a day where the fibromyalgia flares up so much that you feel like a volcano is erupting inside you. It really is painful from head to toe and with little or no energy you really do just have to rest.

The TV goes on and through the corner of one eye I watch something that isn’t very interesting. My husband brings me my strong painkillers and a snack as I need to eat before I take them. One of our dogs, Neo, has realised that mummy is not feeling too good and lies on the floor by me and puts his head by my side. He is not an assistance dog in the purest sense but he knows when mummy is struggling and will try and help me. This will be where my day will be spent.

It’s not always like this but there are more of these not so good days than good days. Honestly, I sometimes feel so deflated that I have wasted the whole day but my husband will remind me that tomorrow will be a better day and I go to sleep hoping and wishing that is true.

Here are some links to have a look at to understand this condition more as there are many of us who suffer.

https://www.nhs.uk/conditions/fibromyalgia/

https://www.cdc.gov/arthritis/basics/fibromyalgia.htm

https://www.versusarthritis.org/about-arthritis/conditions/fibromyalgia/

Here’s to hoping tomorrow may be a better day.

© Sonal Dave all rights reserved 2023. No reproduction of this content in part or in full is permitted without prior permission.

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