I know I talk a lot, loads, infinitely, about pain. But, as anyone living with chronic pain will understand, it’s impossible to ignore. It imapcts and defines every second of your existence as you try and navigate life without making it worse. You wake up at night without a moment to feel dopey because the searing heat of radiating throbbing is instantly in front of you. It pokes and prods at you in every moment, while sat on the toilet, talking on the phone and watching television. It’s poking me right now, even with the usual comforts in place that SHOULD make it more bearable.
They don’t.
Now, I’m going to moan a fair bit in this post, but I want to start be reassuring you it isn’t all negative, as a recent experience showed me. To remedy my negativity, I’m posting in full about the positive experience I had with the NHS about a month ago, and the post will be live later this week (got a bit of editing to do).
Anyway,
Why am I talking about it again? Why am I making my fingers tired and your eyes bleed at the sheer boredom of ANOTHER talk about pain?
Stigma.
It feels like every element of my life is torn open and bleeding heavily because of the assumptions people make about my pain and the resulting impact it has on my mental health.
There’s no question I hurt. Even if I was able to just dissapate the pain of Arthritis and Degenative Disc Disease, I wouldn’t solve the problem. There’s so much going on…
Sometimes, when I sweat uncontrollably because of a flare up, the folicles of my hair sting, and the pain of brushing it forces me to just put up with the knots. Some nights, without any known reason, I wake up with swollen legs, ankles and hands, and I realise it’s happened when I stand up or grip something and feel like the tightness of my skin will burst. Sitting here now I have a ringing in my ears (known as Tinnitus) that is ever present, like a high pitched mini Charlotte Church is living on the edge of my lobes and never runs out of air. I’m forced to try and ignore it every time I talk, or just exist, and it’s worse on a mobile phone where the ringing becomes more audible than the voice I need to tune in to. Again, for unknown reasons, I throw up after eating pretty regularly. Several times a week, sometimes a day. We all sympathise with the radiating pain of reaching. It’s horrid. You heave and heave all the while wondering when it’ll end and wishing for your mum to hold your hair away from your face. When it’ over it’s hard to prioritise the pain in my stomach, the throbbing in my head, and the existing pain in my joints and back. Everything hurts and I’m exhausted.
Other things are happening that I have to give a low priority to, that someone living a ‘normal’ life would probably treat as urgent, but the mountain of problems has to force some things to the bottom. Broken/missing teeth, extreme insomnia, extreme constipation, multiple mouth ulcers that make it hard to eat, headaches, skin infections following extreme itching, constant itchiness, stiff hands and feet, pain in my heels…I could go on. It’s all being ignored because the things I include under the ‘chronic pain’ umbrella are more urgent.
Despite living with all this, I rarely take the opportunity to talk about it. Obviously being indoors for 18 months now makes it hard to engage with healthcare in the usual way. I’m not excluded, but everything takes much longer, is far more effort and is peppered with repeated questions about my lifestyle that has been detailed over and over again. I know my life is weird and hard to believe at times, but the reality is true and I shouldn’t have to face a wave of disbelief after it’s been witnessed and recorded repeatedly. But the limited amount of time we get doesn’t allow me to explain all this, even though most of it is necessary in order to get the right help.
All of this combined makes me understandably reluctant to seek help, so I rarely do.
When I’m desperate though, when my pain or ailment is so bad I can’t exist even in the most basic way, I have no choice. I went 2 weeks without a shower when I got covid and when it got that bad I had to admit defeat. I needed assistance.
Sadly, choosing to engage means my disappointment and defence has to be readied. On standby. Why?
In the past, asking for help for severe pain and discomfort has lead to many disappointing reactions….
- Being talked over
- Being disbelieved
- Being told I should ‘try harder’
- Being told it’s all in my head (tell me about it!)
- Being told I’m not doing enough, then being told I’m doing too much
- Being told ‘I feel sorry for your family’
- Pity
- Hearing ‘a woman your age should be out with her friends’
- Being asked the same questions over and over again
- Being offered solutions that don’t fix the problem AND create new problems
- Believing someone will help, but still waiting for that to happen
I’ve been reporting a downturn in my physical health for 18 months, and in that time I’ve been assured help will come and it will get better because (in their words) my ‘poor quality of life is of huge concern’. But nothing has changed except the pain increasing and my quality of life getting poorer.
What people don’t understand or acknowledge, and the place where the worst of the stigma exists, is that these reactions and the failure to find help just makes my mental illness worse.
I am ashamed. I hate how my life has turned out. I wouldn’t wish this level of discomfort and isolation on anyone. So when the few people I let in, healthcare professionals mostly, react in all the ways above, my disappointment and belief that I’m worthless inflates further. It leaves me even more afraid of the outside world, even more afraid of pitiful stares and knowing glances while I navigate town in my wheelchair, it even makes me afraid of my daughter and how she’ll feel when she understands how disappointing I am.
I’m so desperate that, honestly, if the devil himself stood before me with an offer to remove my pain for just one day in return for sacrifing something else, I’d struggle to say no. Lose the TV for a pain-free day? Yeah, ok. Lose my voice in a Little Mermaid style pact? Yep, my partner would be thrilled. Take away my treasured books so the shelves beside be were bare and reading became a thing of the past? Fine, just take the bloody pain away please. Remove the delight of velvety smooth chocolate when I’m feeling my worst, and the mouth-watering effect of it’s presence? Ok, we may have found my limit.
Seriously though, when pain is a constant presence, it’s hard to see, think, feel or imagine anything else. I’d like help to make just one single thing better so I can see other things past this room, past this computer screen, and past the ever-present agony.
For once I don’t know how to provide a solution to a post. This rambling reads as desperate, sad and infinite, which is exactly how my depression is. Worse because my pain is unbearable, heavier because the sleeplessness is constant and hard to defeat, nasty because the sting of agoraphobia has cost me everything, but the aching in my bones keeps finding more to take away.
If I had a wish, a wish just for me where I couldn’t end war or poverty, or find the solution to climate change, I’d ask for something simple, something most people take for granted and something I wish we could all find without such immense, unfruitful effort.
Complete understanding and empthy in health, for everyone.
Because while I’m moaning about the decline of my brain pain at the hands of my physical pain, I know there are thousands more who are in colossal agony and without a partner to help them to the bathroom or talk to at the end of another exhausting day. Their ONLY conversation is with healthcare professionals, and if it’s as negative an experience as I’ve known, then it must be hard not to feel utterly lost.
If you are feeling alone and defeated with pain, especially if, like me, it’s hurting your happiness too, then please seek help from an organisation who understands.
My journey into ME/CFS caused me to pluck up the courage to speak with the ME Association. In just twenty minutes I felt heard and understood, and finally I felt like some parts of my problem made sense. The lady I spoke with was highly knowledgeable and understanding. She was able to give me ideas to try that might help with various aspects of the problem. Everything from insomnia to physical exhaustion was discussed, and she uncovered some of the smaller things I experience, things I’d put on the low-priority list, that were likely to be linked to it all.
It was refreshing and, even with my existing problems still attacking me, I felt lighter.
It’s been a week since we spoke and even though other negative things have happened, even though I’ve struggled to sleep and found myself sobbing in the bathroom, again, because I’m so tired with vomming, remembering that twenty minute chat has made it all a little easier to handle.
So, although I don’t have any specific solutions for you today, the advice to speak with a charity, an organisation filled with people who are there (often voluntarily) just to help people like us, is the best I can offer. It has to be worth twenty minutes of your time to find support that truly helps, doesn’t it?
If ME/CFS is something you think might be effecting your life, then I can highly recommend The ME Asscociation. Their phone number is 0344 576 5326, but check the website for opening times.
The picture
It’s mid-November, and, as I mentioned in a previous post, I’ll now be taking part in the festive spirit until further notice. I need some joy, and Christmas with it’s cinnamon smells and chats with my daughter about being thankful, are just the ticket.
I drew this picture of christmas cookies a few days ago, while wishing for chocolate and wondering how much more my waistline can take.
Look, I don’t enjoy being overweight. It’s definitely NOT something I’m proud of, and I’ll always be battling the bulge. However, we all need a vice, and in a world without friends or parties, a world without booze or cigarettes, a world without my family who are now all gone, I think it’s understandable that food has become my naughty misconduct, and I have to forgive myself for it.
I’m off to watch a christmas movie.
Thanks for reading 💜
Creative Steph 