Ten Years With Chronic Pain and Illness

Today is a weird milestone in my life; one I never thought I'd be marking, one I'm not sure how to feel about.

Today, I have officially been living with debilitating chronic pain and illness for ten whole years. (It isn't the beginning of my chronic pain journey- it actually began twenty-three years ago when I was just thirteen... but that's a story for another day).

I honestly can't believe that this milestone is a part of my life. I can't believe I'm sitting here reflecting on a decade of living with life-changing chronic pain and chronic illness. If you'd told me ten years ago that I would still be in severe pain ten years later or how much my health would change my life, I'm not sure I would've believed you. I wouldn't have been able to comprehend it, and if I had, I would probably have just given up the fight there and then. I couldn't imagine lasting another week in pain, let alone another decade, and didn't think I'd have to. Back then, I assumed I'd just injured myself somehow, and thought I'd be as right as rain in a few days if I ignored it, and just kept going. 

Boy, was I wrong!

The pain didn't just continue but grew worse as the days blurred in to weeks, months and years.

Now here I am, a decade later, still in pain and diagnosed with multiple chronic illnesses- Ankylosing Spondylitis, Arthritis, Fibromyalgia, Bertolotti's Disease, Degenerative Disc Disease, and Tachycardia, plus a naturally fused spine, and a facet fused to my sacrum. Even though the warning signs were there, I never imagined for a moment how extensive my problems would turn out to be. It didn't even enter my head.

A decade ago, I was just a normal, able-bodied twenty-six-year-old, working as a visual merchandiser in retail, and spending my days off going shopping, to the cinema, and to concerts with friends. I got mild aching pains in my bones and joints (undiagnosed Arthritis), but they hadn't so much as slowed me down since my mid-teens. Then one September morning, I woke up with back pain, and in less than a fortnight, my whole life was turned upside down. Now I'm a disabled and chronically ill thirty-six-year-old with multiple conditions, living mostly housebound, and spending much of my time in bed alone riding out the pain and fatigue, or going to medical appointments. (Can you hear that chorus of tiny violins?!) What a difference a decade makes! It's crazy how quickly your entire life can change beyond recognition. If I had known what was coming, I would have tried to live a much fuller life. (Although, life's too short for the shoulda coulda wouldas).

Still, as it's the anniversary, I can't help thinking about everything I've been through these past ten years.

I'm not going to sugar-coat it; the last ten years have been some of the hardest years of my life- not just physically, mentally, and emotionally, but socially, and financially, too. 

I've spent every waking second in extreme pain, getting very little or no relief from any painkillers or treatments. Pain so bad it makes a broken bone feel like a broken nail, and would reduce burly grown men to tears. Pain in my joints and in my bones and in my muscles and in my skin. Shooting pain, stabbing pain, throbbing pain, radiating pain, aching pain, burning pain, I've experienced it all- and then some. Then there's been painful back spasms, stiff and swollen joints, twitching nerves, muscle aches, debilitating fatigue, persistent tachycardia (which has quite frankly been terrifying), challenging brain fog, and a whole host of delightful symptoms I've had to contend with on a daily or regular basis.

The pain has been so overwhelming that there have been times when I've wanted to not be here at all. Thankfully, those thoughts don't happen often now, but it hasn't always been that easy. The first year was definitely the hardest; I can't think how many times I silently cried myself to sleep during the first six months, just wanting the pain to stop, and to get my old life back. Fortunately, I never gave up, and the days got easier as I got diagnosed, and learnt to navigate life with chronic pain and illness, but it was hard-going for a while.

I had to fight to be believed, diagnosed, and be given the treatment I deserve. For years all I heard was that I was 'too young to be in pain', and I'd be 'fine in a week or two', as I was shooed away with another sick note and another prescription that never touched the pain. It wasn't until I ventured in to private health care three years later that I started to get answers and support. Those early years almost broke me.

I've been x-rayed, scanned, and jabbed with needles. I've tried treatment after treatment, and countless painkillers and anti-inflammatories.

I went through one horrific weekend of withdrawal after an incompetent doctor I went to for help yelled at me and took me off all of my meds cold turkey. I've never been so ill in my life. 

I've ended up in A&E twice with ridiculously fast tachycardia and palpitations, and have had several ECGs.

I had to give up my job in visual merchandising, and my dreams of getting back in to animal care. I was making plans to go back to college to study animal care again when I got ill, which sadly had to go out the window.

I've spent most of the last decade bed ridden or housebound, missing out on new experiences and meeting new people out in the real world because my pain has been so debilitating. Living housebound with chronic illness has been extremely isolating, and while I'm an introvert and enjoy time alone, it's been hard not having regular interactions with people outside my own family. I've lost friends since I've been sick, too, and that hurt a lot. 

I've also had to say goodbye to many of the things I knew and enjoyed in life. I had to mourn the life I knew, and the person that I was, as well as the future I'd hoped to make for myself. I'm not going to lie; this has been hard at times. I've missed out on so much during what could have been some of the best years of my life, and sometimes I can't help feeling left behind because I don't have or haven't experienced many of the things society says I should have by my age. Thankfully, I have learnt to make my peace with that, as well as knowing that my future could be very different to the one I'd imagined, but it's only natural to feel sad about that sometimes.

Fortunately, as a socially-awkward introvert, housebound life hasn't been that hard for me to cope with overall. I like my own company, and I've learnt plenty of ways to fill my time. This blog has been a particularly invaluable coping mechanism, giving me something to throw myself in to, and has always keep me busy. I've also found comfort in reading, crafting, watching movies, hanging out with my dog, and all kinds of little things. I've gotten used to a quieter way of living, and have learnt to appreciate the little things in life, and make the most of every day. When I do get to go out and do something fun, I appreciate it so much more.

The last ten years have also been hard financially. I've had to jump through hoops to prove I'm deserving of financial help, and went through a soul-crushing fifteen months without a penny to live on because the DWP decided being able to go the hospital for medical care meant I wasn't sick enough to need help. (Seriously). Luckily, I appealed, and won my case at court, but the whole experience was a nightmare.

I've been through a hell of a lot in such a short space of time, and sometimes I don't know how I made it through.

This is probably going to make me sound like a self-indulgent twat, so feel free to roll your eyes, but I'm proud of myself for getting through the last ten years. I'm proud of the way I've handled every hurdle, from my life being turned upside down to living in constant pain to dealing with each diagnosis. None of it has been easy, but I've got through every day and every challenge without having a break down or giving up. There have been times when the pain has been so overwhelming I've not wanted to be here, but I've somehow found the strength to keep going, to keep fighting through the pain and the fatigue, the stress and the isolation, and I'm proud of myself for that. 

I know I must be coming across as incredibly negative today, but I don't think about the last ten years in a negative light. I've always just accepted my life for what it is, and tried to make the best of every day. Sure, there have been plenty of awful days, but there have been plenty of positives, too. The journey has taught me so much. I've learnt so much about life, and about myself as I've navigated this unconventional life with chronic illness. I've learnt what I'm capable of, how strong I can be, and just how much I can endure when pushed beyond my limits. I've learnt to appreciate the little things in life, and make the best of every day, with what I have. I no longer take life for granted, like I used to. I know how quickly everything can change and be taken away from you. I'm grateful for everything this experience has taught me, as I wouldn't be the person I am now if I hadn't gone through it all.

I don't know where the future will take me- and I don't really like to think about it, as thinking about the future with chronic illness scares me- but wherever the next ten years lead me, I know I'll get through it. If the last ten years has taught me anything, it's that I'm stronger than I give myself credit for, and if I can get through all that I have, I can get through anything. 

Even though I'm being reflective and letting my feelings out here today, I don't want to focus on the negatives today, nor remember what I've lost or what I've been missing out on. (I wrote this post a few days early to process my feelings ahead of time). I'll of course be acknowledging what this day means and will be giving the last decade some head space, but I'm hoping to make today a positive one so this date isn't just 'The Day My Back Pain Began' or 'The Day My Life Changed Forever.' I'm currently in one of my favourite places enjoying a week's holiday, so I'm hoping to make some nice memories today to cancel out the bad ones. I want today to be a good one. I don't know where the day will take me, but I'm hoping I'll be well enough to take a short day trip or at least go for a walk on the beach. I'm going to eat some good food, breathe in the sea air, let the sea breeze carry away the stress, and relax to the sound of the seagulls. It's going to be a better day than this day was ten years ago, I'll make sure of it. I've not come this far and gone through what I have to let one bad day a decade ago spoil another day of my life.

Life is far too short for that.

You Might Also Like

Nine Years With Chronic Pain

Nine Years With Chronic Pain

Today, I have officially been living with chronic pain and illness for nine whole years of my adult life.

One more year, and it will be an entire decade.

How did that happen?

Where did the time go?

One minute I was waking up to back pain as an able-bodied twenty-six year old, and now here I am, nine years later, aged thirty-five, still in pain, and chronically ill with Ankylosing Spondylitis, Arthritis, Fibromyalgia, Degenerative Disc Disease, Bertolotti's Disease, and Tachycardia. I'll say it again: how did that happen?

I can still remember that first day as if it were yesterday.

At six am on the 8th of September 2011, I awakened to pain radiating from deep within my lower back. It was faint at first, but it felt different to any pain I'd ever felt before, and I instinctively knew something was wrong. Ironically, I was woken up by my sister who was sick and needed me to take her to A&E, so I did my best to ignore the pain, and took her to the hospital. I continued to ignore the pain in my back for almost two weeks, hoping if I kept working and moving around it would just go away on its own. Instead, it was getting worse day by day, and on the twelfth day, I came home from work after a nine hour shift and collapsed on the kitchen floor. I gave in and phoned the doctor, and while it took years to get diagnosed, from that point, my life was never the same again.

Sometimes it feels like no time at all has passed since those early days, and other times it feels like this has been my life forever. I've become so used to this way of life; living housebound with constant pain and fatigue, taking medication, regular trips to the doctor's, blood tests, treatments, flares, reduced mobility, rarely leaving the house, and needing help from family with every day tasks. It's just as normal to me now as my life before chronic illness was. (Although, if you'd have told me nine years ago that I would still be in pain nine years later and chronically ill with multiple conditions, I never would've believed you. In fact, I would've probably laughed in your face).

I made my peace with the changes to my life a long time ago, but of course, there are still days when I miss my old healthy life, and mourn what I've lost. I was only twenty-six when my life was turned upside down, and sometimes I do mourn all the things I've missed out on during what should've been some of the best years of my life. I'm only human. I had to give up my job and dreams of going back in to animal care. I lost friends when I got sick. I've missed out on travel and meeting new people, getting my own place, and a world of possibility. Sometimes I do feel sad thinking of what I've missed, and I can't help wondering where I'd be now if I hadn't gotten ill.

However, these thoughts only hit me occasionally (albeit, a little more frequently recently after realising how many years have passed) and I try not to think of the changes to my health and life too negatively too often. I shouldn't be thinking of it as a life lost. I'm not dead. Just because my life is different now, doesn't mean it has to be a terrible life. Yes, living with chronic illnesses is challenging every single day, but I have plenty of things in my life to be thankful for, and lots of little things that bring me joy and make my life worth living.

I can't go out all the time and live my life to the full the way I wish I could, so I've learnt to find other ways to fill my time from home, and try to appreciate the little things in life. A good book, nature I can see outside my bedroom window, craft projects, sunny days, cuddles from my dog, good food, new brooches, music, movies... all kinds of little things. It's a different, slower way of living, but it's still a life. And it's the only one I've got.

I'd love to get my old life back, but let's be realistic; it's never going to happen. Most days I can barely even get out of bed for the pain. I won't get better, and will likely only get worse as I age and my conditions degenerate. The old days are gone, and I can only look forward.

I'm never going to be one of those inspirational disabled people who overcome their challenges to climb mountains or sail solo around the world (but let's face, I never did those things before chronic illness, either), but I'm proud of myself for how I've coped every step of the way over the last nine years. They've been the most life-altering and debilitating years of my life. I've been through a lot, life's been hard at times, but I'm still here, still fighting, and making it from one day to the next. I'm proud of myself for never giving up even though at times I may have wanted to when the pain has been unbearable, and yet another doctor wouldn't take my symptoms seriously. I'm proud that I'm stubborn, and don't give up so easily.

I got through the last nine years, I got through another period of chronic pain in my teens, and I know I can get through all the years of chronic pain and illness that might be ahead of me. I just need to take each day one at a time, and keep making the best out of the life I have. 

That's all anybody can do, right?

I can't help but wonder where the next nine years will take me.

It's probably not far, but I'll keep you informed!