By Beth McIntosh.
Trying to describe what it’s like to live with fibromyalgia to someone who doesn’t live with it is possibly akin to trying to describe snow to an octopus, but I’ll give it a go.
In October 1987, at 22, I arrived home from hospital with my first (of five) babies I assumed that everything would be fine when I had got over the labour. However, as the days and weeks passed and I was still completely exhausted and friends of mine who had babies around the same time were already whizzing around, with their full ‘face’ on and their houses immaculate I began to wonder what was wrong.
I assumed that I had some kind of post-natal depression or that the ‘baby blues’ were just taking their sweet time to shift. My gorgeous baby boy didn’t sleep, which obviously didn’t help, but this was more than just tiredness, this was painful. My muscles and joints burned, walking around our home was an effort let alone trying to leave the house, it was as though I were wading through treacle and getting nowhere fast.
The episode passed and I thought no more of it, until it happened again and again and indeed after each birth and each time I assumed I was just taking a little longer than most to get over the labour and dealing with night feeds.
After the birth of number four chronic back and hip pain became part of my life, indeed so much so that I can’t remember a day since without pain. I was told that it was ‘wear and tear’ and a natural part of aging, I was 29 by that point!
Every time I was sent to a new physiotherapist or chiropractor I was asked all of the same questions and when I tried to veer away from the script to attempt to include the vast array of other symptoms I was always brought swiftly back. No one seemed interested in the whole of me, just the part that I had been sent to them about. My back, my muscles, my brain. Oh, I haven’t mentioned that joyous bit yet have I.
So, fibromyalgia can also present with cognitive symptoms too, it’s the gift that just keeps on giving. Depression, anxiety, memory loss, forgetting words (there’s actually a name for that but I can’t remember it, the irony), inability to concentrate on anything….the list goes on. With depression and anxiety comes lack of sleep, which then triggers my other symptoms, fatigue and widespread pain.
Many of the professionals I saw, who went through that script, remarked that I had such easy labours with each of my babies, which I had, my first labour was 45 minutes (from first contraction!) and the longest was around three hours. Just gas and air and not a stitch – for these things I am eternally grateful as I have no idea how long the recovery time may have been if I had needed any kind of medical intervention. BUT what these professionals didn’t do is ‘join up the dots’.
Fast forward to 2009, two years after the birth of number five and I was still recovering from the birth! I imagined that because I had a baby so late (nearly 43) that it would take me much longer to recover and that’s just the way things are. Then new symptoms started to arrive.
Fatigue so bad that I could barely move the muscles in my face, my body felt oddly toxic. Every day as soon as I had eaten breakfast I would feel intensely nauseous and wiped out, as though I were coming down with flu….every day! Then it would pass and I would get on with the day. Sometimes, however it wouldn’t pass and I would write-off the whole day, week, month. I thought that maybe I was allergic to something in the breakfasts that I was eating, which was usually Weetabix or another high fibre cereal, so I gave them up to see if it made a difference and it did, for a while, but then other foods started to have the same effect.
My doctor wasn’t sympathetic in the least, he didn’t listen to the list of very random symptoms I had and just focussed in on the low mood and was writing out an anti-depressant prescription before I had even finished talking. So I just put up with all the symptoms and dealt with the now daily attacks of debilitating nausea.
It wasn’t until around 2012 that I saw yet another osteopath who asked the ‘how were your labours?’ question and who then said ‘oh, you’re hypermobile. This could be the problem with your back, it doesn’t have the strong ligaments to support the bones and joints and so is permanently out of place.’
Brilliant, I thought, we are getting somewhere here, but that was it, no follow-up no deeper questions to what else this might be linked to. Thank goodness for Google is all I can say. I typed hypermobile, nausea, fatigue and a few other symptoms and a few million results popped up, each with a word I had never heard of ‘FIBROMYALGIA’. I read everything I could and could have cried, finally there were other people out there with the same thing, it really was a THING, I wasn’t just a hypochondriac.
So, I went back to the doctor, this time with a written list of symptoms and handed it to him, I’m not sure he could really believe what he was seeing, every part of me had something wrong, I was broken and was looking to him to fix me. After a lot of tests, which were really to rule other things out, I was told that I had Fibromyalgia and Chronic Pain Syndrome and it’s not curable. What do you do with that kind of information?
I felt as though I had been told that’s it, you’re done, this pain, fatigue, depression and memory loss is your life, forever. And, it is, to some extent. However, knowing what it is, feeling that I am no longer just failing to cope with the demands of motherhood/adulthood has helped. Having a husband who totally understands has been my life-saver…..I am not being figurative, there have been times when I have felt so low that I just wanted to go, lights off.
But I have five gorgeous sons, two beautiful granddaughters and my amazing husband to live for. So, what do I do? I let myself feel the pain, I try to understand my body, I cry some days because there is so much I wanted to do today but even my fingers hurt so it’s going to have to wait again and then I enjoy those days when I can move freely, when I’m not encased in anxiety and feel able to engage with my world, my friends, my family.
Over the years I have lost so much time to this, so many days lying in a heap and watching other people move easily through life and it feels so unfair. I had so many ambitions to travel, to write, to live life to its fullest and I know so many other people have overcome far worse things and gone on to achieve amazing things but, for me, the anxiety is the worst. It has zapped all the confidence I once had, it has made me feel frightened of so much, the planning of the minute details of a trip to the corner-shop takes so much time that I often just wait until my husband gets home.
As I approach my 53rd birthday (December 19th if you were wanting to send a card) I want to say that I feel determined to overcome this, to be re-born into a confident, vivacious and active woman but I know I have said these things before and, on some days, I am those things, on other days I swallow painkillers that my husband has to put in my mouth because I can’t lift my arms.
I realise that I am wallowing here in ‘me, me, me’ the reality is, though, that every day that I am unwell is full of guilt for all of the people that I feel I have let down, either on a small-scale – I didn’t bake that cake with my youngest that I promised I would or on a large-scale – I have ruined all of my children’s lives with this stupid ‘lazy-itis’. I beat myself up all the time for not being the brilliant mum I wanted to be.
I have just graduated, with a First, in English Literature and Education, I also received an award for outstanding achievement in my dissertation (the highest mark ever across campus). I am beyond proud of this, I worked so hard that I cried sometimes through exhaustion. The cognitive and physical symptoms all played against me but I did it.
The stupid thing is, that today I am proud, as I write this I am congratulating myself on that success but I know that when the next episode comes along I will feel worthless, I will feel that the examiners must have made a mistake, that I am not clever and that I will never be able to use my degree for anything anyway, so what was the point of all of that hard work.
When I write, I usually like to have a punch-line, something positive for the reader to take away but I am aware that this piece just goes around in circles. I want to leave you with some good news but then I remember the bad and that is how it is.
Tomorrow is another day though….you see…I am trying.