5 things to remember when you can’t stop dwelling on living with no cure.
The Marathon of Chronic Pain
5 things to remember when you can’t stop dwelling on living with no cure.
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Introduction- Why I’m writing this post…
I had a terrible New Year’s Eve. I basically sat in my room, heart pounding because the neighbour’s sporadic firework display was giving me major anxiety and heart palpitations.
I don’t know what started it really. I guess because last year I was so hopeful for 2018, and yet I ended up with two serious diagnoses. Ehlers Danlos Syndrome, and Irregular Sinus Tachycardia. 2018 had been a struggle from start to finish for me, and so this New Year’s Eve I wasn’t hopeful for 2019, I was just freaking depressed.
I think the holidays makes people like me, people with chronic pain and invisible illness, take stock more than others, and a lot of the time I think we end up more disappointed than average Joe. It almost seems cruel that with this disease you are faced with so many unknowns and yet one unwavering certainty, that you have this thing for life and that it will limit you, that it will take things from you.
As I sat there, heart quite literally feeling like it was going to explode from my ribcage and leave festive red splattered all over the walls, I realised that these moments are what the doctor can never warn you about.
I guess what I’m trying to say is, I’m medicated, I’m under a doctor’s supervision, I have a diagnosis, and yet I am still living with chronic pain every day and it fucking sucks. No one doctors appointment, single drug, or good night’s sleep is going to fix that. It’s always there, sometimes less than others, but always in the shadows like a little git of a gremlin, waiting to pull me down without warning.
Nobody tells you when you are diagnosed that accepting this thing that’s come into your life uninvited isn’t just about going, Oh. Ok. Well I guess that’s that then. In fact, I’m still trying to accept my situation three years after my very first diagnosis of Fibromyalgia.
It isn’t a straight road to acceptance, where everyday it gets a little bit better either. It’s a rollercoaster. It dips, it does loop the loops, it rises, and it plummets you to depths you didn’t realise you would ever see, and sometimes these moments of pain, of doubt, and utter hopelessness come from nowhere.
I guess what I’m trying to say, is that chronic pain and invisible illness feels overwhelming, because for those of us who suffer with it, there’s no end in sight.
No hope that it might get better or magically disappear. We have to live each day, motivate ourselves to keep going, with no end goal, no finish line, and that is freaking hard.
Well alright then grumpy knickers…
I know, I must sound like some doomsday prophet, but I promise you this article is going somewhere positive, and soon, because now I want to talk about how 5 ways, I personally manage to keep this knowledge of long-term effort and endless personal battle from stopping me from moving forward in the present moment.
1. It’s not just about your body…
In fact, I’d say that 80% of surviving chronic pain on a daily basis is about your mental state. Your mental state is what forces you into getting out of bed, in spite of the pain, and what keeps you from dwelling too hard on the realities and unknowns of a future where chronic pain is an undoubted factor. It’s important to have mental strength, and that means being reflective/mindful, having a support network, (even an online network works) taking care of any mental illnesses appropriately by taking the recommended medications, or attending therapy, and just being generally aware that while your body might be crumbling like a heap of shit, your brain is the equivalent of the little train that could.
I think I can. I think I can…
Sometimes, though not always, positive thought and self-belief are more powerful than any drug. Which leads me onto my next point.
Here are a few of the books that have personally helped me sort out my mindset and that keep me motivated-
UNFU*K YOURSELF by Gary John Bishop
GIRL, WASH YOUR FACE by Rachel Hollis
THE SUBTLE ART OF NOT GIVING A FU*K by Mark Manson
HOW TO LIVE WELL WITH CHRONIC PAIN AND ILLNESS by Toni Bernhard
2. To an extent, you decide how your condition impacts your life, and therefore have some level of control.
“You can have anything in life if you will sacrifice everything else to obtain it.”
This is a bit of a generalisation, but I think the core idea stands true. When you become chronically ill you also become a negotiator with your body (the terrorist). That means you have to decide what to prioritise, what makes you happy, what your values are, and what you really want to get out of life. You can’t have everything, especially not with chronic pain, but if you want a few things badly enough, you can make it work. It is also important not to become so overwhelmed by fear that the core things that make up our lives are forsaken. I have read countless stories of people with chronic pain becoming basically agoraphobic, and honestly, I get it. You become so consumed with battling the pain, that you give up the simplest of things, like going outside for a walk, in order to avoid the pain. But the way I see it, the pain is in most ways unavoidable.
If I’m going to do something that I know will make me flare, I’m going to have a damn good time first. That means I have to say no a lot and reserve my energy for doing things that give me joy, that make me happy, and that lift me up rather than making me feel crappy. It means being firm, and putting your foot down, but for me it really is worth it. For the first time in my life, when I got this disease, I had to put myself unequivocally first or face severe consequences. You’ll be amazed how many things you’re doing not for yourself, but for the appeasement of others or because you feel guilty about not doing it, when you finally start saying no.
So, prioritise, know yourself, and know that you need to fill your life with joy to combat the pain and say no to anything that doesn’t fulfill these criteria where you can. You still have control of your life, so take it by the horns and steer that sucker. After all, I honestly believe that on my worst pain days, laughter has been the thing that has really helped me make it through, so keep things positive and fun where you can.
3. Knowledge is power.
The longer you live with a chronic illness, the more practice you have at dealing with it. As a sufferer of three years and counting, I can honestly say that I’m far better equipped to deal with my symptoms, and even recognise what they’re trying to tell me than I was even 12 months ago. This being said, I think there’s a lot to be said for getting your information from reliable sources. Make sure that you’re reading accounts from sufferers with first hand experience as well as consulting medical texts and articles about your conditions, because with chronic illnesses every single person is unique. As time goes by you will develop your own routine and tactics for dealing with your flares, conditions, and changes in both medication and diagnoses. It’s just a matter of staying up to date with the latest information being published about these conditions as well as becoming self-aware to your needs and requirements. Everything takes practice and dealing with chronic pain and invisible illness is no different. Things will improve over time, you just have to stick it out and stay positive while you’re navigating the pitfalls of trial and error.
4. Your general living situations will change even if your health won’t get any better.
While your health may not improve as much as you’d like, your situation in general will naturally change with time. If you keep a positive mindset and work towards bettering that situation and making your life work around you, you will undoubtedly find yourself in a better position to deal with your condition as time goes on. Whether that be by making your home more chronic pain friendly, obtaining a means of making a living from home, saving money and obtaining the means to travel, becoming an expert in self-care and which diet works for you, or simply starting a long-term exercise routine that builds your strength and resilience over time. It might take a little luck, but the future is just as likely to bright as it is gloomy, so if you take steps toward ensuring that change is a positive one in any way that you can, its likely that you will see positive changes one way or another.
5. Medicine is improving all the time.
It might seem like a long shot but it’s true that medicine, and medications, are developing and improving all the time. You never know what could happen in the future. Who knows, in a year, or five, or ten, there may be new treatments or medicines that make living with chronic pain altogether easier or may get rid of these conditions all together. It might seem naïve, but it’s always an option I like to leave open. After all, no one can know what the future holds.
These are the things I have reminded myself on days when I wonder how long I can continue what often seems like a half-life, and I hope they help you too. There is always another perspective, another angle from which we can view our lives and remind ourselves that we have the power to decide whether we flounder or thrive within these situations. I for one, only desire to attempt the latter.
It just takes us finding perspective and an open mind in order to see it.
Did this article help you, or do you have things that you remind yourself about on bad days that aren’t listed here? Leave me a comment and let me know x