They just make you worse.
You know the song, but imagine living it. Imagine relying on medication that isn’t effective when all you want it to do is allow you to get to the toilet without pain.
For those of us living with chronic pain, this is the norm. Trial and error of prescription medication that proves useless over and over again until eventually you’d rather give up and stick with the status quo than be used as a human lab rat.
For me, it’s becoming clear that the heavy pain-relief I’m prescribed is no longer doing its job. As my symptoms become worse and the difficulty of daily life without pain is constant, I’ve started wondering how I get better, or if I ever will.
For the first time in months (maybe years) I took to Google to try and work out why I’m struggling with things that, 18 months ago, were still a piece of piss for me. Not everything is pain related. I’m experiencing symptoms on a daily basis that are scary and sometimes debilitating, and it’s been happening for over a year. Shaking, sweating, extreme tiredness, forgetfulness, difficulty concentrating, stiff limbs, headaches, loss of appetite, sickness, struggling to remember common words, and worst of all, loss of ambition.
The last one was really the straw that broke the camels back. Having ambition, feeling a sense of professional self-worth and being creative are the things that I adore. Besides my partner, daughter and dog, having the arts to indulge myself in is a passtime that makes me happy. It’s the ONLY passtime I have.
A few months ago my despression started to deepen further because I couldn’t find the words to write, I couldn’t find the inspiration to draw, and I didn’t have the energy to hold a book. The enjoyable parts of my life that I used to cherish were gone. Although I’m back and able to write, read and draw for you now, I’ve had to make alterations at home in order to do them, and I have no idea how sustainable it is for me to be creative this way long-term.
I managed to get myself an adjustable desk so I can write on my laptop and draw on my ipad while sat up. Because pain makes it impossible for me to leave this room, the desk seemed like a workable solution. Saying that, I’ve been using it for an hour today and soon I’ll have to stop. Sitting up is painful and I’m finding it hard not to repeat descriptive words because my brain is so foggy.
Understandably I am desperately concerned that my health is now impacting the last few strands of joy I have left. Losing my creative life would, without question, be catastrophic. I have to keep going so my depression and anxiety don’t take over. I can’t imagine the diatribe my internal voice would spout if I gave up. The worthless narrative would be impossible to ignore, and difficult not to act on.
Alternative therapy
Asking for help through the healthcare system takes longer than ever which, in reality, means although I’ve asked for help with all this some time ago, my name is just sat in a pile of paperwork somewhere waiting to get to the top so a doctor will review what’s happening. It’s frustrating, but there are people who need far more urgent attention than me and our healthcare system is in a staffing crisis. If I have to wait so someone else can get help, then of course that’s right. But as someone who just groaned while leaning forward to put a hot water bottle behind her, I have to hope I’ll get to the top of the pile at some point.
But I know, after years of living with arthritis and degenerative disc disease, that getting to the top of the pile doesn’t guarantee me a diagnosis, a solution or any help with it all. I could end a phone call with a Doctor knowing nothing more, and continuing to experience the symptoms without any ideas or medication offered.
So, I have to try and help myself. The desk I mentioned earlier is part of that. I’m also trying sleeping solutions (hypno sleeping courses available via an app on your phone) so I don’t feel so tired. I’m taking my medication in stages so I’m getting the maximum effect throughout the day. I’m using hot water bottles and fans to help with pain and control my temperature at the same time. I do the exercises given by physios, even when my pain is increasing.
But all of this still sent me on a journey towards a Google search of my symptoms. A whole year of this stuff happening, and on occasion I’ve been really scared, and still knowing nothing about why it’s happening is just too stressful for me.
Once I’d trawled past the doomsday diagnosis designed to scare the shit out of me (the thing Dr Google does best) I found one option that came up repeatedly. In fact, I have every symptom and for the life of me I can’t understand why it’s not been considered before. For balance, I gave my partner to read the same articles as me and asked his opinion. He was as perplexed as me.
Why has no one considered a diagnosis of ME / CFS?
Having read more and more about it I found that one of the critical considerations before a doctor will consider this diagnosis is a patient experiencing the symptoms for a prolonged period. I looked at my diary and I first reported shaking, temperature problems, weakness, headaches, confusion, increased pain and tiredness over a year ago and it would have taken me months before I bothered them with it.
So, for over a year I’ve had these symptoms, but this diagnosis has never been mentioned. My partner manages my healthcare and speaks to doctors on my behalf. With the sole purpose of making these physical symptoms and pain more manageable, he’ll be asking about ME/CFS next week and trying to work out why it’s not been discussed before.
I literally tick every box, and while there isn’t a specific cure or medicinal intervention that might help the symptoms, a specialist might be able to offer ideas or solutions that make it easier to manage them.
I live in fear when these symptoms pop up, and it’s happening every day. I have to try and get some help.
I’ll be taking you on this diagnostic journey with me in the hope that we can learn more about interventions that aren’t medicinal, because if I do have ME, there are none available.
If you are in pain or suffering with distressing symptoms every day then please make contact with your GP and get some help. Everyone deserves a life that’s pain-free, especially with things as stressful as they are at the moment.
The picture
Another halloween pic, this time the Cheshire Cat from Disneys Alice in Wonderland.
Why did I choose him? When his body fades all you are left with is a smile, and I wish that my pain would fade in the same way and leave me grinning, inanely, from ear to ear.
If not, a potion that shrinks me would also be welcome.
Thanks for reading 💜
Creative Steph 