Managing Chronic Pain Can Be Dark. So I Make My Own Light.
Everybody experiences aches and pains throughout their life but I want you to imagine what it’s like to wake up every day in pain. Fact is, you can imagine it but unless you’re actually living with it, you’ll really have no idea what it’s like.
I’ve been experiencing pain every day for 6 years. I only quite recently realised that meant I had chronic pain. Chronic pain is defined as pain that lasts for 3 months or longer.
— ϻoxie ϻcϻurder💀 (@MoxieMcMurder) June 8, 2018
I first experienced chronic pain after I hurt my neck. What was first attributed to a simple trapped nerve was actually an annular tear. This tear was leaking fluid which irritated my nerves and caused my neck muscles to go into painful spasms. It was so bad I couldn’t move. I realised at this point that I had never truly known agony. It took almost 3 years to get an MRI to find out what was going on.
During this time, after a long history of back problems but with no diagnosis, I noticed my back pain was getting significantly worse. A year ago, I finally got a diagnosis: 2 prolapsed discs and Degenerative Disc Disease.
During this time, when I had no diagnosis for what was causing such widespread pain, I thought I was losing my mind.
I felt like a fraud, even though I was in horrible pain. Part of me wondered if it was all in my head. You can imagine my relief when I finally got confirmation that there was in fact something wrong.
So, how does this chronic pain impact my life?
I’m actually writing this piece on my phone because I have horrible pain in my shoulder and neck and can’t type. This has become my life and that’s kinda tough for a writer.
When I injured my neck I was running a roller derby team, starting a magazine and had just qualified as a personal trainer. I went from being super active to living on my sofa because I couldn’t sit up, let alone stand. Such a seismic shift in my life was both unexpected and, a lot of the time, kinda hard to deal with.
— ϻoxie ϻcϻurder💀 (@MoxieMcMurder) May 25, 2018
But it’s not just pain – that’s the problem. Chronic fatigue, muscle spasms, sensitivity to touch, IBS and increased bouts of depression and anxiety are part of the mix. You may have heard people say it can feel like waking up with the flu… every day. Aching joints, brain fog and the rest of it are always there.
Forever mood. 💤 pic.twitter.com/G45Hh70OkU
— ϻoxie ϻcϻurder💀 (@MoxieMcMurder) June 25, 2018
Every single day I am, at best, uncomfortable – and on a bad day it’s agony. I have to take a variety of pills and potions just to get through the day, and that in itself takes a toll. I worry quite a bit about what I’m putting my liver through but I try to do what I can to mitigate symptoms.
As usual, I woke up in horrible pain and it’s so bad I had no choice but to pop some of the mega meds. I am now in a rather cosy bubble. 💊 pic.twitter.com/FgJqdYgRqr
— ϻoxie ϻcϻurder💀 (@MoxieMcMurder) May 22, 2018
I really try to not rely on my meds too much. I have a lot of strong painkillers and muscle relaxants and as anyone who has to take these on any kind of regular basis will tell you, it can mess with your head. Which doesn’t help if you’re battling a depressive episode and maybe throwing some insomnia in the mix – we’ve got ourselves a pity party for one!
But I don’t want to feel pity and I don’t want others to pity me either.
So sometimes I’ll push through the pain. I need to make my medication work for me and not against me by taking my meds regularly and if they’re not working, tell my doctor.
Chronic pain and chronic illness are being talked about more these days but it’s still not enough.
You know what? There are still plenty of people who assume you’re just lazy, weak or just straight up lying.
I’ve also heard and read stories of people whose own doctors don’t take the issue seriously. It’s so important to have a doctor who listens and takes the time to investigate when you know there is something wrong.
I’ve had to learn to accept help and to pace myself, which is harder than it sounds. On any given day I’ll have less pain and I think great! and I try to do everything, which ends up causing a pain flare-up. My husband is now my registered carer because there are days when I need help with what would be considered a simple task like dressing myself.
If you’re living with chronic pain and or chronic illness please know you are not alone!
There are so many other people living with the same or similar symptoms. If you’re looking for support beyond your doctor I’ve found some good Facebook groups and, as far as Twitter goes, search #spoonie and reach out.
I feel I should point out that despite it all, I have a good life. Things took an unexpected turn but that’s OK. I have a wonderful support system and I have skills that I can rely on to make money and work from home. I am so grateful for that. It can be hard to remain positive when faced with adversity every day but it’s an ongoing practice and I just have to remind myself of the good things in life, the things you might take for granted.
Some tips for chronic pain sufferers
First of all it’s important that you know that there is help and support out there. If your doctor isn’t interested in helping you, change your doctor and find one who will help you.
If you get muscle knots – I know your pain!
Heat and ice are your friends. Heat the muscles for around 20 mins which will help increase blood flow through the knot. Then apply ice for around 15 mins to help reduce inflammation. If you can, gently massage the muscles around the knot before kneading the knot itself.
Now this may just be me and may not have any scientific basis but some fresh air can really help clear your head both literally and figuratively. If you can’t get out, sit by an open window. I’ve been that person who forgets what they’re talking about mid-sentence due to my nerve painkillers. I am that person who can’t remember their pin number or even a close friend’s name at times!
Pain management can be tricky and I’m not a doctor so if you’re currently taking a medication for chronic pain but it’s not doing much for you, tell your doctor. It could be you need a higher dose, it could be that you need a different medication. There are some holistic approaches that more and more doctors are pushing lately so if you know you don’t want medication, say so and your doctor should be able to refer you to a pain management clinic.
Accept that pajamas are now a big part of your life. Buy some cute ones! Same goes for comfy clothing. Whether it’s leggings, harem pants, skirts, maxi dresses – be comfortable! (eBay is your friend.)
If I can give you one piece of advice, it’s this –
Buy the cheap shake-and-go wig and feel the fantasy. 💜 pic.twitter.com/x1xgwWUJwM
— ϻoxie ϻcϻurder💀 (@MoxieMcMurder) June 12, 2018
Speaking of being comfortable, many medications and symptoms of chronic illness and fibromyalgia include IBS or an upset stomach. Treat yourself to some nice soft toilet roll and grab some of those moist wipes, trust me you’ll thank me later!
Living with chronic pain comes with its own challenges and it’s OK to struggle, it’s expected that it can affect so many things in your life. BUT you are not your diagnosis, you are not alone and there is light even if you’re in the dark right now.
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