May 12th marks fibromyalgia awareness day so I’m going to write about what it means to me.
To most people, fibromyalgia is just a strange word that probably means nothing. To myself and many other people it means “life-altering hell.” Being given a name for what is happening to your body gives you peace of mind. You instantly feel relieved and hope that there is a way for you to get better. You tell your family your diagnosis and have continuous support throughout your journey. Well, with a diagnosis of fibromyalgia, it doesn’t work that way. You get your diagnosis and with it, you get told there’s no definite cause. In fact, nobody actually knows much about it. There are many symptoms including widespread pain, fatigue, sleep disturbances and gastric issues. The primary symptoms vary from person to person and you’re diagnosed based on a process of elimination and ‘tender points.’ There’s also no cure, just a rough-guide treatment plan which involves various medications.
It’s not a death sentence. Nobody has ever died as a result of fibromyalgia. However, it is a life sentence. It’s a tough one too. With this diagnosis comes judgement from others who don’t believe you can possibly be as sick as you say because you look just fine. It can lead to losing friends and family who put it down to mental illness or just faking it all for attention. It can lead to loss of careers that people have worked damned hard for. But worst of all, it leads to a loss of who you once were.
I thought I’d become ok with my limitations, that I’d got used to them. Needing to use a stick to walk the majority of the time and occasionally using a wheelchair too. Needing to rest after short showers and sometimes just getting into fresh pyjamas afterwards. Missing out on social events and cancelling on people at short notice; I didn’t realise this was just a few of the limitations I’d experience.
There is some disagreement among researchers and doctors as to whether or not fibromyalgia is a progressive illness. From my personal experience, I’d say that it certainly is progressive. Even in the past few months I’ve deteriorated. It is for this reason that I am going to actively raise awareness and do what I can to help ensure that research is done to determine a cause, find a decent treatment and hopefully a cure for this bastard illness.
One of my favourite things to do is spend time with my dog, Gus. It’s no secret – I bombard people with photos of my gorgeous boy on social media. He’s always my top priority. Over the past few months though, many things have suffered due to my deterioration, including spending time with Gus. It might seem like nothing to anybody else but to me, it’s another thing I’m now struggling to do. I used to spend a lot of my time in the park so Gus could have a good run around and I could get some exercise and fresh air. I still go when I can but it’s more like once a week if I’m lucky instead of 3 or 4 times a week. I’ve had no choice but to replace that time with lying in bed or on the sofa in pain.
My days now start around 11am, sometimes later. I’m normally woken up by sharp pain in my ribs that makes it difficult to breathe. If I’m having a good day, I will be able to have a shower. On not-so-good days I manage to wash my hair over the bath and on bad days, I might wet the hair brush and run it through my hair. Sometimes I don’t open the curtains or answer the door unless I’m expecting someone. In fact, I barely leave the house. I hate it. I hate wasting my days like this. I forget things all the time and I get angry easily because I’m frustrated with myself and the things I can’t do. I feel like a burden. I’m powerless to stop this illness that is taking over my life. No matter how positive I try to be, my body fights back constantly. I’m struggling to cope and I’ve been hiding it from people for a long time now. It’s amazing how easily people are fooled by a smile and the words “I’m fine.”
I wish this illness would be taken more seriously by those who have never experienced it. A life changing disease like this one shouldn’t be treated like it’s nothing. It’s changed my life forever. I’m sick and tired of being passed from pillar to post because none of the recommended treatments have made any difference and consultants are at a loss as to what to do with me. So much more research needs to be done. I want people to give a fuck about everyone currently serving this shitty life sentence. ✌️