I’ve noticed that my posts about my chronic health conditions get quite a lot of viewers. I think this could be because there aren’t that many chronic illness blogs out there, and we spoonies like to read about others with similar conditions. There’s always the hope that someone may have tried a treatment or medication you haven’t heard of, that could help you. Have they found a successful way to manage their condition, or do they have some hints and tips that you could benefit from? I hope that some of my posts have been useful – I especially think anyone with TMJ/TMD could benefit from this post, as I have tried almost every treatment going (bar surgery) for my TMJ!!
I never really go into the details of my work situation on here, for obvious reasons. At the moment, I am signed off sick, as I was too unwell to successfully complete a phased return. The only benefit of this is that it gives me the time and space to concentrate on trying anything I possibly can to help with my conditions – including lots of rest!
My ME and fibromyalgia are always fairly life-limiting – they get in the way of me leading the busy and active life I once had. I had a huge ‘crash’ on 24 December (yep, just in time for a Christmas spent on the sofa!!) and spent the first 4/5 months of 2015 predominantly bed-bound. I have spent a lot of time trying to work out what triggered this crash, making my ME and fibro the worst they had ever been. All I can think is that I did lift a few boxes at work – I know, I shouldn’t have, but it was only a couple and it needed doing that day. I really didn’t imagine it would have such a big impact! Maybe it was entirely unrelated and one specific thing didn’t cause the crash. I don’t know! I only wish I knew what caused it, as that would help me prevent it happening again in the future.
After around 4 months spent in bed, I finally started seeing some very small positive changes – I was able to spend a few hours out of bed, or wash my own hair. Eventually, I did have a few weeks where I managed a few hours at work most days, but sadly this didn’t last. It was all amazing progress though, considering how very unwell I was earlier in the year.
The small improvements are definitely still happening, but after 6 months, I am starting to get frustrated with the slow pace! I repeatedly have to remind myself how bad I was, and how well I’m doing. Yes, I may still be unable to work, or to get out of the house every day, or to do the cleaning etc… but I AM having the odd good day, I have made it to a few social events, I am spending more time awake (haha!) The thing with ME/fibro is that improvements don’t just follow a smooth line upwards – there are setbacks, big and small. It’s easy to experience a setback and think you’ve gone back to square one, but that’s not always the case. You have to step back and look at the bigger picture. I couldn’t open my own Christmas presents in December as I was so poorly. Today I made my own lunch. That is a huge improvement and I need to keep reminding myself of that!
I’m still titrating my Amitriptyline upwards to try and help with my pain levels. I am due to go to the pain clinic at the end of the month, which I have some hope for. I am undergoing physiotherapy for my TMJ (jaw disorder) again, which I hope will keep the pain levels manageable. It’s all a work in progress… as it has been for almost two years now! Whilst there isn’t a ‘cure’ for ME and fibromyalgia, I remain hopeful that I’ll find the right combination of medication and treatments which will mean I can lead a somewhat fuller life.
If you have a chronic illness, how are you coping with it? Do you find it difficult to stay hopeful, or are you a naturally positive person? Let me know your experiences in the comments box.Never miss another post from me! Click below to follow me on Bloglovin. If RSS or social media are more your style, check out my sidebar! Follow