My journey with chronic illness has been a long one, and coming to terms with how it messes with my life has been hard to navigate.
Right back to my teens I remember noticing symptoms such as experiencing tender points and the agony when people touched them. I knew it wasn’t normal, but I ignored it.
I didn’t need another thing to be wrong with me.
I had enough to deal with already and besides, it didn’t really affect my day to day life. Yes, I hurt a bit more and I got fatigued a bit easier, but I could for the most part function well.
Only when I got swine flu when I was 21 years old did things really start to become noticeable.
I have always had mental health issues and it had been drilled into me that if you feel like you can’t face getting out of bed, you really have to ignore it and push through. Getting up and doing things is a necessary part of managing depression.
So, I tried, I really did. Yet, before I got sick, I was an active student, now I found everything a struggle. My words got jumbled, I stammered, I was in pain and always so, so tired.
The doctor said it was likely post-viral fatigue and I just needed to give my body time to heal properly.
If only it had a name
It didn’t get better and eventually, I was sent off to see a rheumatologist.
I knew something was wrong and I felt once I had a name for it, it could be fixed and things could go back to normal.
What I didn’t expect, was to be told I had something that is incurable, something that would flip not only my life, but also my partner’s and my family’s life upside down.
So now I had not just one, but three names for what was wrong with me. They were written on a piece of paper.
But what that meant for me, I didn’t know.
No going back to ‘normal’
It took a while for it to sink in that this was it now. This is how life was going to be from now on. There was no going back to who I was and to what I loved doing.
I couldn’t hold a pen for long, so no more penfriends. I couldn’t hold a needle either, so no more crafting. I had real trouble remembering things, so no more university.
My life, which I thought was finally, slowly moving onto the right track crumbled in front of me once again and with it I broke down.
I gave up.
My other half would go to work and come home to find I hadn’t moved all day. What was the point to go on if my life was full of pain and I was unable to do anything? What was the point in anything at all anymore?
A slow change
Eventually my partner told me He couldn’t go on like this, things had to change. He knew I couldn’t do what I used to and he wasn’t asking for that. What he was asking, was that I do something – anything – to show I was willing to try and rebuild a life.
So, I started a blog. It was a place where I could note all the good things that happened each day. It didn’t matter how simple or how small it was. All it needed to do was to trigger a smile.
I don’t think either of us would have guessed that small decision would have led here, now, writing this for you.
I’m not going to lie to you and say everything gets better: my pain levels are worse than ever, my hands can hold hardly anything, my left side has started to weaken – another thing I’m going to have to have checked out. I have had to make a lot of adaptations and changes to help me in my day-to-day life.
Learning new lessons
However, I’ve learnt that just because things change doesn’t mean they end. It doesn’t mean you have to give up. Fibromyalgia has led me to blogging. It has led me to meet new people and experience things I wouldn’t have otherwise.
It has shown me that even though times can be hard, you can still make the most of things. It has taught me that it’s OK to sometimes not be OK. I have learnt that I need to work with my body and not against it and how important pacing myself is.
I have learnt how important it is to ask for help when I need it – from friends, family and the medical profession.
Most importantly I have learnt that the people who love me will accept me as I am now.
So yes, my life has changed. But it wasn’t an ending, it is just a new chapter in my book.
UK/MED/19/0062 March 2019