Acceptance of Fibromyalgia

By Lyndsey

To me acceptance is a big part of life when you live with a chronic illness – acceptance of the condition, how your life has changed to accommodate it and all the changes you have to make to be comfortable daily. Then, there’s sacrifices you make – but it doesn’t have to become a negative thing, if plans need to be cancelled because you’re not feeling 100% that day, or because you know that if you push yourself and do whatever you had arranged you’ll regret that decision in the long run, that you know you’re going to be making up for one occasion for the rest of the week. In the end the fatigue will become so overwhelming that it will affect your home and work life, the medication that you religiously take on time won’t have its usual effect and I think we all need to start listening to what our bodies and brains are telling us because if we don’t its all just going to spiral and then each day will be even more challenging.

I find food can become a massive issue if you have IBS (a fibromyalgia side effect). Recently I cut out all dairy, my body appears to react to  everything except eggs so for example if I have white bread - I bloat really badly and in turn that puts pressure on my spine and organs. If I have cheese or milk I feel really nauseous, so I now have dairy free spread on my toast and Soya milk in my tea but oh how I would kill for a chunk of cheese more - but then I have that little voice in my head saying “you’re gonna be bad and you don’t like feeling sick!” and that is all I need to not have it. Past experience of how a certain thing makes me feel always come back so this is  one of these sacrifices that I mean - I hate it but I have to just accept it. It all comes down to a little acknowledgement of what your body is screaming at you not to do. So now, you’ve made plans, you feel awful but have the added guilt of letting people down but shouldn’t the people who are around you be understanding that you have good days and bad days? That you're not being awkward if you say “can we rearrange?” and just understand you're being sensible. You now accept that if you go ahead and have that night out you're going to suffer, just think “OK I’m not good today and it’s not happening but it will at some point” and that is a huge step in acceptance and living with a chronic illness.

But listen, it will get easier for you and no I’m not just saying that this is going to be the end of your social life or the end of all enjoyment in your life. What I am saying is if you start altering things, make different choices, if mornings are better for you that’s not a bad thing and same goes if afternoons are. There are things like bottomless brunch (I don’t drink now so free refills of the tea pot is a winner for me) but mornings and afternoons out to me means my medication isn’t effected, it means I can still enjoy myself and not worry that I’m gonna suffer for the rest of the week because I took a day out and lived a somewhat normal life for a change. I personally prefer afternoon catch ups now because I find I tire easily, I no longer enjoy large groups because the more tired I become and the more drunk I look (although I never am) and I am still very conscious of what others think. Another issue is the groups pace may be very different to yours, they may want to move from one place to another which becomes added pressure that you have to think about and to be quite frank I’m a cheap date and after 2 drinks I’m tipsy.

What I want to stress though is that others must not dictate your life. If friends or family are frustrated and annoyed at your lack of participation keep explaining exactly how it makes you feel and never allow others to push you into doing something you don’t have the energy to do. If you find you come across this behaviour often then they're not really thinking of your best interests are they? There’s this thing now called blocking, I love it and have used it a lot over the past few years it now actually gives me great satisfaction if someone becomes to much of a pain to me I just go block, block, block and block.

Let me give you a prime example, this weekend my manager who I’ve worked with on and off for over 9 years left the company I work for and the talk amongst the department was all about her leaving party the following day (a few drinks in a few pubs in town, meeting at 3pm then going for a meal). I thought smashing, ideal for me, I’ll have a few mocktails then leave before the meal (I find if I eat after 8pm I suffer with IBS more) then I'll be back home to have a nice bath and start on my timed meds. So, first set back came when Charlotte (my eldest daughter who works with me) took bad with Covid and announced she wouldn’t be able to come, that straight away put the doubt in my head because my family are my comfort zone and I know I'll be ok if they're around me but I was determined I was going. This manager worked with me during the early days of my diagnosis and witnessed a lot of my self destruction and my cocky attitude which was actually me trying to win the daily battle. She accommodated me in random shift requests, like finishing at midnight on a Sunday so I could be around to watch my son Callum play football on a morning (the condition would not let me miss out on things even though I felt like I was dying most of the time). She allowed me a shift between school hours so I could try and always be the one who picked my youngest daughter Ruby up from school, she also was there to witness the acceptance of how I was and the changes I had to make. She allowed me to step down from responsibility within the department and allowed me to just come in and do my job and after a while began to understand that I just craved to be left alone. Often she told me that she had no issue with my work and always knew that she’d get her hourly rate out of me workwise (which was a massive relief because I worry I don’t work quick enough), we both knew that if either of us had a problem we could speak to each other and for that I appreciated and respected her even more as a manager. Don’t get me wrong, not everything has been rosy, we have had quite a few run ins and I have often had a telling off for speaking my mind (I despise negativity and unfairness in the work place, I hate to see people treat unfairly so I will speak up if I don’t agree. Well I did, now I just step back because I don’t want the hassle anymore). She told me I need to choose my audience to who I speak my truth to but I now think if they dent like me then tough - I have to much to deal with and I don't have the energy or the time to tip toe around people - honestly having a chronic illness toughens you up. If you let it then it will make you become a bitter person but acceptance brings realisation that no matter what you throw at it nothing is going to change, it is what it is and the sooner you accept it the sooner you can start living your life again.

I knew though walking off the department at 6pm at the end of my shift I wouldn’t be going out. I was agitated with myself for cancelling but I’d been hot all day, completely overheating and nothing I tried would regulate my temperature (the joys of having Fibromyalgia and taking Duloxetiene). I tried standing in the dairy fridge, walking up and down the fresh aisles but nothing worked. I was annoyed at my body because I had all my outfit planned and even my spends put to one side, everything was organised but leaving that evening I had to accept that I just couldn’t do it, it wasn’t going to be worth the repercussions I'd have to deal with if I forced myself to go out. I tried telling myself “see how you feel in the morning” but after a horrendous night with my medication not working I could feel that I was flaring again but couldn’t pin point what was causing this to happen, normally for me over doing it is a massive trigger. I knew it wasn’t the heat causing the flare up because in May I travelled around Morocco and some of the temperatures reached 38-40 degrees which I discovered that, coupled with the constant well-paced movement actually proved to be a massive help to my condition, it actually helped me reduce my medication over the 13 days which for me is a massive achievement. What also may have helped is the fact I was travelling alone without friends or family (but part of a small group) and once we’d finished our evening meal I could retire to my room, strip to my undies and lie starfish on the tiled floor – I cant really do this at home as it would be frowned upon, I don’t think they would appreciate a sweaty mess lying semi-naked on the floor plus one of my dogs would probably end up sitting on my head which wouldn’t be too pleasant.

So Sunday morning, well, afternoon I eventually arose - sitting on the edge of the bed as I normally do waiting for my legs to wake up and I began to have one of my personally most hated symptoms of fibro wash over me – the dreaded nausea. It was at that point that I realised as a flare up I also had heat stroke – as a ginger child (well auburn actually) I suffered relentlessly from heat stroke even after all of my mothers constant attempts to cover me up – bloody heat stroke! So down the stairs I plod trying to remain cheerful and not the frustrated agitated mess I felt, I couldn’t even stuff my face because I felt sick. It was at that point Charlotte messaged me to say she was meeting up with Emily (my manager) in a few weeks on a Sunday to have tea and cake (much more my thing) – now I knew I’d be able to relax and enjoy the company instead of feeling on edge of saying the wrong thing. So that little bit of acceptance and re-planning cheered me up, life is far too short to beat ourselves up for what we can’t do.

So now it’s Tuesday and for the past few days I have done absolutely nothing. I have totally tuned into my body and done exactly what it was telling me to do – REST. I’ve ate what I want in moderation, sleeping still isn’t happening but it will eventually. I’ve even refused to go anywhere with family members, I can’t be bothered and I don’t feel guilty for saying that either. I think this weekend is the first time I’ve actually refused and not gave in, I’ve stuck to my normal routine and daily pace and am feeling much better, I mean my pain levels are still high but manageable but truthfully I'm still left hoping people would just accept and understand that suffering from a Chronic Illness is enough of a reason to say NO I don’t want to do that, or NO I don’t want to go there, is it really is it us that has the problem or them? I think acceptance has to come from everyone or be like me, be miserable and swear a lot when they take no notice they’ll soon get the message.

Stay strong!