Hi Everyone, firstly thanks for taking the time to check out this post. My name is Dan AKA @chronic_pain_guy on Instagram and I was asked to write something for this site.
As a bit of an intro I have Fibromyalgia as part of this I have chronic pain, fatigue and all sorts of other fun stuff. I also suffer with migraines, anxiety and depression. Overall that makes a lot, along with a lot of tablets too.
The Instagram account is where it all started. I was off work sick for the second day in a row and was bored also feeling a bit isolated, so I thought I could start an account for a way to connect with people and as a bit of an outlet for me too. One big thing to know about me is that I try not to take too much seriously and if there is a joke in the situation I will find it. I use pictures and memes to express myself, showing what I am feeling and hopefully allowing others to find it funny but also relate.
My life with my pain
I have had symptoms of Fibromyalgia for years but was diagnosed near the end of last year, my pain had got dramatically worse and I spoke to my GP who suspected it and sent me for tests and then to specialists. It wasn’t a huge surprise and the more I researched the more I fit the bill. Also, my mother has been living with Fibro for many years and we suffer from some very similar symptoms as part of it.
I work in a warehouse and have now had to change my duties completely to allow me to carry on working, although I have had a couple of difficult moments with my employer overall I’m very well supported and they have helped me carry on working. My days off are always recovery days and towards the end of the week things get tougher and tougher. I find my legs get very painful along with my back which makes standing tough. I will fully admit that the pain can make me snappy and moody, paingry is a really thing! Sometimes holding it in and not admitting the pain means it will escape like this.
This condition causes many worries
- Will the pain carry on getting worse?
- Will it means I have to leave my job?
- Do people believe me?
- What if I am crazy and it's in my head?
- Will I pass this on to my son?
There will be many many more but that's the most regular ones.
What I would ask people to do?
- Learn about the conditions and invisible illnesses, especially if you have friends or family with conditions.
- Believe, it can be very hard but it's real you can’t see it and we can hide the pain well, plus the pain can move and change with the snap of a finger.
- Ask about it, if you can get some understanding of how it affects the person you are talking to you can help better and understand more.
- Ask if we are ok, you will get a yeah fine. Follow it up and you will find out how we actually are.
- Understand, we will cancel plans, bail out and be non-committal. We will get tired, angry and annoyed quickly, it is rarely cause of you.
Lastly I wish this on nobody it can be horrible, isolating and very depressing, my community has allowed me to feel less isolated and allowed me to see that there are people worse than me and better than me, some have showed such kindness and support. Some days are good and more are bad. There are lots of “cures” out in the world and lots of people trying to make money off your pain, but if something works for you then do it!