Fibromyalgia & Me: Living The Chronic Life

Welcome to a new feature on The Bandwagon, a series of posts all about living with a chronic illness. I want to explore how it really impacts our lives, in ways those without such an illness could never imagine.

Fibromyalgia

Definition

Fibromyalgia is ‘a rheumatic condition characterised by muscular or musculoskeletal pain with stiffness and localised tenderness at specific points on the body’. But it is, of course, so much more than that. Chronic means that it is pretty much forever; I’m stuck with Fibromyalgia for the foreseeable, so I figured I’d better learn to live with it.

Symptoms

My symptoms to date include widespread pain, sensitive points, fatigue, muscle stiffness, sleeping problems, memory problems, irritable bowel, sensitive bladder, sensitive to touch, light and sound, painful periods, and headaches. If I missed any, I blame the ‘fibro fog’. It’s all well and good rattling off a list of symptoms, but how do they really affect our day-to-day life?

Spoons

I appreciate that Fibromyalgia manifests in different ways for different people, so I’m not going to speak for everyone, but for me, my symptoms mean that I struggle every day to balance what I need to do. I have to think ahead, consider my pain level, tiredness, time I need to take my medication. I can’t just jump up and head out for the evening, or meet a friend for coffee at the weekend; I have so many factors to consider before I embark upon anything out of my normal routine. This is also known as ‘counting spoons’, which comes from the Spoon Theory.

Routine

I have to work, it’s as simple as that. Our financial position doesn’t allow for me to lounge around on the sofa all day in pyjamas (more’s the pity!). So getting to work is a priority, as I’m sure it is for many people. I get up, get ready, go to work, come home, have dinner, shower, go to bed. Sounds simple, right? I think many people who live without a chronic illness just don’t understand how much more we have to think about. On a normal work day, I have to drag myself out of bed, since my medication puts me in a deep sleep, and one alarm just doesn’t cut it any more. I have to ease the stiffness in my lower back before I can get dressed, go downstairs – hell, even sit on the toilet. I may have to elicit help from my partner to get my damn socks on, and I’ve had to swap the bras I wear because I just couldn’t stand underwire bras any more. (Now I wear bralettes, and I have to say, they’re pretty comfy!)

That’s just the mornings. The evenings are full of compromises. Do I want a meal cooked from scratch or clean hair? It’s one or the other. Can I do the washing up or will I be yawning my head off by 8pm? Where one person may have single, simple things to consider during the day, I have to think about so many different things that may be impacted by my illness, or actually have an impact on my illness, and the day ahead of me.

Priorities

Sorry, friends, but that coffee date just isn’t a priority, when I’ve got washing to do, cats to feed, a house to clean. If we have actual plans, I’ll make an effort to keep them, but my illness often gets in the way. After working a full week, plus managing a blog on the side, and doing all the other mundane, normal things like cooking and cleaning and running errands, I’m pooped. I sleep pretty much all weekend, which I’ve been advised against, but sometimes I just can’t keep my eyes open. I don’t often socialise or even go out to eat; I regularly flop around on the sofa all weekend, binge-watching shows or reading. What I need people to understand is that I simply don’t have enough energy to do everything I need to do, and fun things on top.

I guess you could say I’m managing my illness. I’m testing out medication, working with a GP who I actually like, and generally doing what I can to live with Fibromyalgia. But it’s no picnic; in fact, it’s a constant struggle, always compromising and missing out on things, worrying about certain events, about how I’ll manage to travel into London, for example, or walk further than a few metres if parking isn’t available. I hope it will get easier, or at least not get any worse, but this is what I have to deal with. The worst part about it is that people just don’t seem to understand, and expect way more of me than I can manage, or they might not believe me. Fibromyalgia is tiring enough; the idea of me putting this on all the time sounds exhausting.

Do you live with a chronic illness? Get involved in the discussion by commenting below.
If you want to contribute to this feature, email thebandwagonreviews@gmail.com.

NHS | Arthritis Research | Fibromyalgia Action UK

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22 thoughts on “Fibromyalgia & Me: Living The Chronic Life

      1. I’ll ask the girls, and I’ll think about doing one myself. Anything in particular you would want us to write about? I think Aimee’s video says how she feels about having a chronic illness, doesn’t it?

        Liked by 1 person

      2. I’d love more posts about how we live with chronic illnesses. About how we still have lives to live, things to do, but with the pressure of a chronic illness on top. It might help people feel less alone.

        If you do decide to write anything, or want to chat further, pop me over an email 🙂 thebandwagonreviews@gmail.com

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  1. This is a great post, do you mind if I reboot it? It is nice to read a post that is honest. I am about to write another post about how I manage fibromyalgia on a day to day basis as a reader asked for more information and this post would be great for her to read as well! X

    Liked by 1 person

      1. That’s ok. I thought it was a great post and I was only thinking today about posting about what fibro is again after being asked for more info so it was a well timed post! I am also enjoying reading your blog.

        Liked by 1 person

  2. Just came across this. Thank you for posting. I have Fibromyalgia but it’s mixed with TMJ Disorder and Trigeminal Neuralgia. Last time I went to work, I stared at my email inbox and flat blanked out from pain, forgot how to do anything and everything (fibro fog? I’m not sure). I was sent home, later lost that job due to not being able to handle light, noise, reading, vibrations, pretty much anything related to working in an animal shelter. Discovered I was now prone to headaches, nerve pain and migraines at any time of day or night. Two years later I’m on disability and trying to keep some meaning in my life as I remain in the dark at home 24/7. The fibro is particularly problematic because if I don’t exercise, my joints lock up and cause severe pain at night but if I work out I excite my trigeminal nerve and give myself nerve pain. It’s been a weird trip discovering a midway between different head issues and I’m hoping to hear more about how folks handle these things.

    Liked by 1 person

    1. Thank you for your response! That sounds terrible. Can the doctors do nothing for you? At least so you can manage the symptoms. I’m on Amitriptyline for the Fibro and it does help, but I’m by no means cured. I don’t know where you live, but I know a lot of people swear by medicial marijuana. I tried CBD oil for a short time but it didn’t do much for me, and it tasted awful! But it can help many different disorders.

      I hope you’re getting some treatment from the doctors! I still haven’t had a physio appointment, after 3+ months! It can be frustrating. You should check out the blogs on the Chronic Illness Bloggers Network, see if anyone else has a similar experience to you. x

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      1. I was on Amitriptyline for Fibro but found that it was causing suicidal ideation after awhile. So they switched me to a few different things before we settled on two different drugs called Buspirone and Bupropion. I do use CBD but sometimes nothing stops the pain, just takes the edge off. I’ve seen three different neurologists at this point and all of them say things like “the brain is a very complex organ”. And thank you, I’ll check out the Chronic Illness Bloggers Network. Sounds like it will be very useful.

        Liked by 1 person

      2. Pressed send too early! I hope you do find something that helps – I know what you mean about just taking the edge off. People have told me to change various things in my diet and so on, but nothing really makes a difference! I’m on 50mg of Amitriptyline now, hopefully it won’t stop working!

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      3. I realized I do have something that helps me. If my joints are acting up really badly, I’ll take Dextromathorphine. This sounds strange but my wife had been taking dextro pills for some time for her fibro before I met her and she clued me into it. I take an over-the-counter version called “Delsym” which is basically dextro and a bunch of flavoring syrup. To give you an example of it’s effectiveness, I had what felt like a sprained wrist for two weeks and couldn’t use my right hand without severe pain. It wasn’t sprained, that’s just how the joint was acting. So I took 20ml of liquid dextro and I was able to use my hand again that day. Something about how it talks to part of the brain that causes coughing spasms seems to be key in this but I’m not clear on why. I was never prescribed it, just started trying this at home and found it effective.

        Liked by 1 person

      4. Thanks for sharing! I’ve never heard of it, but it could well help my ankle, which feels like it’s fractured! I’ll do some research and see if it’s available here.

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