Some people with Fibromyalgia, experience “flares”. A “flare means; a temporary increase in the number and/or intensity of symptoms. Some flares only last for a day or two but others may continue for several weeks or even months. I am not one of these people. My pain is with me daily and never leaves me. I don’t experience good days and bad days like some. My Fibromyalgia is chronic and impacts my daily life. I have no days off. Fibromyalgia is a full-time job. With no benefits.
Today is Saturday. Although I fell asleep early last night (early for me is 11 pm or 12 pm due to insomnia) still 12 hours later I am tired. Too fatigued to lift my head off the pillow. I am woken up by my husband at 11 am. Asking me if I am ready to get up. I am not. I barely manage to answer his questions. Too tired to say more than one-word answers. I am too fatigued and the pain is that bad that I couldn’t get up even if I wanted to. So in bed, I stay.
1 pm my husband asks me again if I want to get up. The answer is no. Still too fatigued to lift my head off the pillow let alone attempt to sit up. After 14 hours of solid sleep. Getting out of bed feels like an impossible task. Like climbing Mount Everest. So in bed, I stay.
5 pm my husband asks if I would like something to eat. I say no. I am hungry but too tired to eat. My arms are so pained I am unable to dispense my medication from the packets. Popping them out of the foil is just too much. My husband dispenses my medication and gives me something to drink. After taking my medication back to sleep I go.
My husband leaves me for the night. I continue to sleep until he wakes me the next morning. Without him rousing me. I would more than likely continue to sleep until at least lunchtime.
Despite sleeping for 24hrs I am no less tired than I was before I went to bed. A symptom of Fibromyalgia is non-restorative sleep. I have Chronic Fatigue Syndrome as well as Fibromyalgia. So I experience it two-fold.
Non-restorative sleep definition
Non-restorative sleep and daytime fatigue are two common symptoms of fibromyalgia. Some polysomnographic data suggests people with the condition experience wakefulness during the non-rapid eye movement (NREM) stages of the sleep cycle and receive less slow-wave sleep as a result.
The next day I awake having not eaten for more than 24hrs and more often than not. I don’t take all the medication I should have taken, as I have slept for a whole day. This means that not only do I wake up still chronically fatigued. I wake up in excruciating pain as I have missed 2 or more doses of my pain medication. On mornings like these my husband has to lay out my clothes, help me dress and lead me to the couch where I will stay for the remainder of the day. Reliant on him for everything.
This is how my weekends are spent. Come Monday I have a part-time job that I must turn up for Monday-Friday. I have to navigate through all my symptoms along with work and family life with 2 boys. Like anyone else I have bills to pay and a family to support.
Without being dramatic, remaining completely frank about my situation, the only word I can use to describe my situation is hell. It’s a living hell and I wouldn’t wish it on my worst enemy.
Related article: “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? “
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Right there with you! only I don’t have 2 kids both in late 20! I also don’t work although money is a struggle I can’t seem to find an employer who excepts “I’m too tired to work today”
It is an extremely hard juggle 💜
That scene you describe of you stuck in bed, hardly able to raise yourself to take the medication which your husband brings to you because you’re not able to get it for yourself, is very, very familiar.
Then I hit rock bottom, changed surgery, changed doctor. My ‘new’ doctor shifted the emphasis from medication to therapy, both psychotherapy and physiotherapy, and that was what started me on a good road.
It’s taken some years, and a lot of determination. I’m still wonky – very wonky sometimes, but the days of lying there – crying – with Mike bringing a little saucer on which was my array of tablets – are now a memory – and I hope/intend to keep it that way.
The same things don’t work for everyone, especially with these kind of conditions, which are so individual in how they express, but – I’m wondering about your doctor, and how much time are they prepared to spend in paying attention and thinking about how best to work with how you are? I hardly saw my doctor, it was usually the nurse, who told me that each new bad thing that was happening to me was “a usual side-effect”.
I’m wondering about your doctor and how much real thought is going into the possibility of change.
What you’ve written brought back a vivid, vivid memory – one of the many that I’m trying to let go!
It does make me very appreciative of the progress I’ve made. I get very pissed off with it all at times, so, maybe it’s not a bad idea to keep some memories as a reminder of where I was, and how far I’ve come.
I very, very much hope that you can progress – even just a bit – a bit at a time – even just not to be stuck in bed. I remember first being able to walk round in the house a bit, and look out of the windows – different views!!!! Then, the first toddle down the garden!!!
As you said previously, some folk don’t bother with you when you can’t do things – the garden always welcomes me.
One other thing I’ve been thinking – you write well.
It was when I was ill, and stuck in bed or on the sofa, I started to go for walks in my mind – the walks that me and Mike and Ben-The-Dog used to do. Then, when I was a bit better, I sat up and wrote them, longhand, in a sketch pad on my knee, then, better still, sat at the computer and typed up those walks, which became the start of my ‘walks’ pieces in The Orkney News. I’m wondering – would you consider writing more? You do paint a vivid picture! Maybe of the plus as well as the minus? It might help to take you out of where you are, how you’re feeling – if you see what I mean.
Just a thought.
I’ll be giving you a lot of thoughts, and sending good vibes your way too.
Thank you for your kind words. I have been writing for about 4 years. I have no idea if I am any good at it. I started writing when I lost my job due to my ill health. It was a way for me to express how I was feeling as nobody around me understood how I was feeling, and then there were the one’s who didn’t understand and the ones who didn’t want to either.
We get very little help/access to adequate care for chronic conditions in Orkney. My GP has been brilliant but all that is on offer is medication. In 10 years I have never been offered anything else. I have been on the runaway medication train twice now and I have no desire to go back the way. I was taking 35+ plus tablets a day. Now I take as little as possible. Still, I am refused adequate pain relief. I don’t expect to be pain-free but if they could just reduce it by one on the pain scale it would help me so much.
I work because it gets me out of bed. That is THE only reason. If I didn’t work I would just stay in bed 24/7, never leaving the house. At the moment the only time I leave the house is to go to work.
I have got back into writing again recently and I would like to be able to do it more to create awareness of chronic lifelong conditions. I have also taken up watercolour painting as a way of further expressing myself.
Send you good vibes too. I do my best to remain positive and focus on the good in my life. I look for that small nugget of positivity in everyday no matter how bleak it may seem.
Have you been following these?
Our idea is to find one thing in each day to appreciate, enjoy or admire. We’re managing it so far – there always is something – however small – or grand!
I had a good night’s sleep last night – which I very much appreciate – but I can’t take a photo of that!
No I haven’t. I will now though. It seems we have a similar outlook. Even on the days I can’t get out of bed I look for something positive, or something to be thankful for.
No I haven’t. I will now though. Seems we have a similar outlook. Always finding a positive in each day 💜
I will follow it now. Seems we have the same outlook. I always find something positive in each day or something to be thankful for 💜
I’ve been at rock bottom once and made a decision that I never want to return. I try not to wallow, let the moment pass and move on. I try to focus on the positive. Chronic illness has taken so much from me but in a strange way it has also given me so much, taught me so much too. Chronic illness has made me who I am. It may win small battles at times but it will NEVER win the war <3
“let the moment pass and move on”
“It may win small battles at times but it will NEVER win the war <3"
Ain't that the truth!
I think maybe I sometimes annoy people with my relentless positivity – they don’t see me/hear from me when I’m in the Badlands!
It’s part of my survival strategy.
“Man was made for joy and woe,
And when this we rightly know
Through the world we safely go.”
And now, I switch off for the evening, both this computer, and myself!
Some people do find relentless positivity annoying.
I think that is because they don’t understand it. They have never been truly happy and they don’t know how to be either. So when they see people who are genuinely happy and appreciative of what they have. They find it annoying. It perhaps comes from a place of jealousy? Envy? Because it is something that they have never experienced and don’t have the capacity to either. That’s my thoughts.
I think you hit the nail on the head there, Thora.
But – folk can work on/with themselves – they can, if they choose to.
On a brighter note…..Wait ’til you see the frog rescue in this week’s ‘One Day At A Time’ – what a way to start a day!