Generally speaking, my day-to-day my mood is pretty good. Having suffered with chronic illness for a few years now I have gotten used to the fact that my disability can, in the least change the way that I must do things. For example, I cannot type on a computer without pain therefore in order to write this post I am using dictation software, which if you’ve ever used it, you’ll know is not without its issues. If you thought that auto correct on text messages was problematic and at times quite comical, you should try talking to your laptop. So, apologies if you notice any typos on the website, it’s the software that’s the problem, not me, honest!
After receiving a diagnosis, I eventually had to come to terms with the fact that I had to establish new routines and ways of doing things. Also, and just as important, my family, had to learn to adjust to this new me. They now know and understand that when I struggle with chronic fatigue and therefore cannot attend or take part in a family event that it’s not just because I’m a bit tired.
As much as you try to pace yourself, plan your activities and do everything that they say you should do it is not an exact science by any means. There is very little information available on the causes of fibromyalgia, therefore it is not always easy to identify what will ultimately be detrimental to your health and wellbeing. That’s the frustrating part of it, or at least one of the frustrating parts of it. You can feel okay…ish one minute when you’re medicated then wham, it hits you and before you know it you have a migraine, aches and pains all over your body and without the capacity to even enjoy a rest day watching box sets. It can be difficult at these times to see the positives and keep smiling but, spoonie warriors, we must endeavour to do so.
This year I am due to celebrate the big 40, along with many schoolfriends who I still keep in contact with. We are now scattered across the country, but all still relatively near to one another. As I am not the oldest of the bunch, I have already been invited to two birthday bashes where I would have the opportunity to meet up with the rest of the gang. Initially, without thinking I accepted the invitation and even booked the hotel before suddenly realising that there would be absolutely no way, I would be able to manage it. The party would be a few hours’ drive, I struggle after 20 minutes to half an hour of driving. Even being taken as a passenger I would have to lie down in the back of the car as I wouldn’t be out of sit upright for that long.
I also struggle immensely with poor sleep, largely due to the pain that I experience on a day-to-day basis. I cannot medicate in the evenings as my medication prevents me from sleeping, I therefore have to weigh up whether I would rather try to sleep with pain or stay awake, relatively pain-free. This may seem like an obvious choice but trust me the fatigue eventually catches up with you and ultimately leads to more pain.
I digress, anyway, it turns out that the birthday bash venue is actually a field where friends and family are invited to camp for the weekend. A few years ago, I would have thought that sounded amazing and such a giggle, but my outlook has changed so much that all I can think about now is how long it would take me to recover and the pain I would have to endure in that recovery.
I explained to my friend my predicament and, as expected she was completely sympathetic, lovely and kind about it. However, if I am truly honest there is always still a little part of me that wonders whether people truly get it. You’re basically saying to people, no I can’t spend time with you because I think it may cause me significant pain. Not a nice thing to hear or to say for that matter. The very word “pain” is loaded with negative connotations and is extremely emotive. When you see the change in people’s faces when you tell them that you suffer with a chronic pain condition it makes you and them immediately feel uncomfortable. However, that is my day-to-day.
I have read a lot of blog posts recently written by people with fibromyalgia who experience “flareups”, meaning that they only experience symptoms of fibromyalgia periodically, from time to time. Unfortunately, that is not me, I live with my fibromyalgia every day, some days are worse than others, but it is always there. Without medication I would struggle to get up in the mornings let alone do anything that others would consider “normal”. Not meaning to sound too flaky but I am at peace with that. I suppose the point I am trying to make with this post is that, yes it sucks to have fibromyalgia and yes at times it can prevent me from doing things, but it really isn’t the end of the world, and so there is no need to feel sad for me.
Most of the time, day-to-day I am fine. We have adjusted and created our own type of “normal”. I may not be able to travel the country to visit my friends but trust me when I say I will be celebrating in style when my birthday comes around and I can’t wait for it.
One last thing that made me smile and will hopefully make you smile too is that as I said earlier I am using dictation software to write this post, in doing so the computer thought that I was putting a shout out to “all spooning warriors”, what a thought. You’ve got to see the funny side, else what is there.