Many of my posts have been about my own experiences with Fibromyalgia but in this post I am going to discuss the time in which I first came to know what fibromyalgia is and the issues it causes.
Fibromyalgia has been in my life for much longer than since my diagnosis. I think I can probably say that this was the sole reason I suspected I had fibromyalgia long before my actual diagnosis. My mum got diagnosed when I was 15/16 (I am now 25) and it was the first time I had ever heard of fibro. For me, the first battle was just learning how to spell the word so that I could research it! The best thing, especially now since my own diagnosis was that straight away I decided to learn everything I could about the condition so that I could learn how to help my mum in the best way possible. You can ask my mum, she will tell anyone that I went about reading every leaflet and website I could find but I think you can read as much as you want but without experiencing it personally you can never truly understand how exhausting this condition can be.
There have been times when living with a parent with a number of chronic illnesses has made me feel quite lonely. It can be exhausting, especially when she is having a bad day. One of the worst things I found was I didn’t have any friends who were experiencing the same things. The only person I could really talk about it all to was my best friend, despite the fact she has doesnt experience the condition herself she has always done her best to both learn what I need to do for my mum and also what I may need. Since my diagnosis she has also been the only person I am 100% comfortable with. She is the one person I am happy to say “Sorry can we stop” “I need a tablet break” etc etc.
The worst experience of my mums fibro was a massive flare that she had just over two years ago. At the time we didn’t know it was a fibromyalgia flare, but from learning what happened during that flare and seeing her during subsequent flares, that was the one time I truly seen how bad fibro can be. I spent 6 days caring for mum in my university flat. Combining coursework with medication run, to hours spent in a+e sat next to my mum stroking her hair. She was in the worst kind of pain ever, she thought she was dying. Doctors were sure we would need surgery because of the pain but all tests came back “normal” and in the end they sent us home. The next night mum took another turn for the worst and we ended up back in hospital. Mum still says to this day that the doctor in a+e that evening was useless (we were there from 10pm-4am!) but i realise the doctor did her best and did the best that mum needed. That is because after 6 hours sleeping and on a drip mum actually woke up the next day feeling a lot better and that is when I realised it was a flare.
Since then any times mum has had really bad pain and said “im dying” I have managed to stay calm, I talk her through it, keep her calm and we always know that deep down over the course of a few hours she will start to feel better. It is also because of all these experiences I have managed to calm myself down during my own terrible pain episodes. Learning how to look after my mum has made looking after myself a lot easier.
To this day I look after mums meds, sort her doctors appointment and try to be there for her at all times. Living both sides of the chronic life (to care for and to suffer) is difficult but both help make the other slightly easier because the understanding is naturally there.
I would love to take away both of our pain, but I can’t. I’ve just found a way to manage it best I can!