Imagine waking up every morning, unable to sit on the toilet or bend over the sink to splash water on your face until you’ve been up and walking about for at least half an hour.
As some of you may know, if you follow my Instagram, I’ve spent the last week in hospital due to herniated discs in my spine. This is a more personal post than usual but I thought I’d share what’s been happening in the hope it will help people understand what it’s like to live with chronic pain and hopefully sharing the experience will help someone else feel less alone with what they’re going through.
I fractured a vertebrae when I was 13 years old. I was at school and it was a little icy in the playground. I went to go in to the toilet block and as I grabbed the handle my feet flew out in front of me and I landed on my back. I managed to stand and get inside but then slid down the wall in agony and that’s where I stayed till the ambulance showed up. Three and a half hours strapped to a spinal board with head blocks on, I was finally x-rayed then made more comfortable. I was sent home 4 hours after being admitted and told I was fine. I never really thought any more about it and carried on through my teenage years, dancing and doing what teenagers do.
Fast forward to age 20 and I slipped over on a wet floor in a shop. I walked in the door, turned the corner and off went my legs again, sideways this time. On the way down I hit my underarm on an ice cream freezer and smashed my hip on the floor. I got up and out of the shop as quick as could due to embarrassment but the pain was awful. The bruising was pretty awful and a week or so later I slipped my discs for the first time.
I’ve never felt pain like it, even giving birth wasn’t as bad as what I was going through. I couldn’t stand up and was having to crawl to the toilet in my flat, crying in pain. An ambulance was called and off I went to the local general hospital. By the time I got seen the MRI scanner had closed so back in the ambulance and off I went to the nearest hospital with a 24 hour scanner; 60 miles away from home. I was petrified as I was on my own and having to leave my 5 month old daughter behind.
I had an emergency MRI pretty much as soon as I got there and was told I’d herniated discs L3 and L5 (the Lumbar (lower) part of the spine). I don’t really remember much after this as I was painkillered up to the eyeballs but I spent 5 days in that hospital, only seeing my daughter towards the end of my stay because she wasn’t allowed on the ward so I had to walk out to see her. I went home, still in pain, and was told I was on strict bed rest for the next 6 weeks till my disc went back into place.
In the process of suing the shop I fell over in, I was sent to a spine specialist in London. During the examination process he asked about the accident at school so I proceeded to tell him what had happened and that I was sent home the same night and told I was fine. Well, this is where he told me (and my mum who had come with me) that no, I’d fractured my spine and it was written all over my notes. I think my mum was horrified even more than I was. I had a weakened back from the age of 13 and knew nothing about it!
I was back and forth to doctors and physio’s for the next few years, slipping discs every year or so. The pain has never gone away fully, I have good days and bad days but even on a good day there is always at least a dull ache in my spine. For the first couple of years I relied on painkillers but chronic pain just takes everything from you, I’m constantly tired and I could never work out why. It seemed that no matter what exercise I tried or painkillers I was given, the pain just wouldn’t subside. Another issue was that I got so dependent on Co-codamol that it stopped working. I then decided that I would stop taking the medication and would only use it if I needed it. I’d lived with the pain for so long that it became normality and I could handle the daily aches so that meant that when I did have a flare up and the pain worsened at least painkillers would work again.
Skip forward to today. I’m now 30 (31 next month) and have actually forgotten how many times my back has “gone”. Usually I go to the doctor’s, get prescribed the same Naproxen, Co-codamol and Diazipam and get signed off work for a week or two while my back repairs itself then I get referred for physio 6 weeks. I could feel my back starting to weaken a couple of weeks ago and went to the doctor’s as I usually do and she suggested I try taking the weaker, over the counter co-codamol, the supply of Naproxen I have and refer myself for physio again. It was still painful so I went back to the doctor’s again, got prescribed the strongest co-codamol, a different anti-inflammatory and some Diazipam to help me sleep. Again though, it just got worse. When my discs herniate, I usually do something to cause it, like stand up wrong or twist badly and I feel a “pop” and that’s it, I can barely stand. Not this time though: every time I got up in the morning it was a little worse.
Excuse the dirty mirror and my belly but this is what happens to my body when my back gives up. My right hip always goes out and my belly looks big because I’m hunched over so badly.
The pain is excruciating and there never seems to be an end in sight. By the time I went to the doctor’s for the 3rd time I couldn’t do anything without being in tears. This time around, my doctor refused to do anything for me as I had numbness in my legs. An ambulance was called and off hospital I went, for the first time in years, expecting to be given a strong dose of something and sent home like the last time I’d gone in.
4 hours later, I was admitted for the night as they wanted to do an MRI scan. By the next morning I had lost the ability to stand at all, I just about managed to get on a commode to go for a wee with the help of a nurse but that was the last time I stood up for 24 hours. Oramorph (liquid morphine) was doing nothing for the pain so they kept trying different combinations of medication to and help me, for 2 days I was accidentally being double dosed on 2 different versions of morphine and I was still in agony. My MRI results were sent to a specialist surgeon at a different hospital but the decision was made not to operate (again) as even though the discs were touching nerves, they weren’t touching the right ones! The hospital physio’s helped me get back on my feet on the second day using crutches so I could at least hobble to the toilet but I had had enough after a week and asked to go home. I figured that I may as well be in pain at home with my family than be in pain in a hospital 20 miles away, missing everyone as they couldn’t always get up to see me.
I’m now home and being looked after by my Mum, who I couldn’t thank enough at the moment! I am waiting on a referral to a spine specialist but who knows how long that will take to come through and how much longer I’ll continue to live with chronic back pain before it gets bad enough for the NHS to operate.
Chronic pain does affect you in more ways than just the pain. A lot of people just think you suffer from back pain and don’t realise the effect pain has on a daily basis. I struggle to do things that most people can do without thinking twice. It takes me a good 5 minutes to be able to stand most mornings and then another 5 before I can sit down again to go to the toilet. I basically have to “warm up” every morning. I struggle to do some basic household tasks, hoovering being my most hated chore as it kills my back.
It’s not just the pain though, the fatigue that goes along with it also affects daily life. I feel constantly knackered, and will quite happily fall asleep on the sofa in the evenings, or even the afternoon if I’m mid flare up.
All of this also affects the people closest to you too though. My other half has had to take the role of not only Dad but Mum and carer too at the moment whilst also working full time, he looks as shattered as he actually is. My Mum has become daytime Mum to me and the toddler and is then picking my eldest up from school, feeding us all, then taking us home to get the toddler in his PJ’s and getting him to bed whilst doing her own housework too. And of course, my children are suffering too. My 2 year old can’t have proper cuddles with his mummy because she can’t pick him up and she can’t lean down to kiss him or sit on the floor to play. My 10 year old is having to help her mummy do everything from fetching things from another room to settling her little brother back down when he’s gone to bed because it’s too much for mummy to get up the stairs.
I would love to pay for private surgery so we didn’t have to go through this again but it costs tens of thousands of pounds so it will never happen. I’m just keeping my fingers crossed that the spinal specialist will finally get me on a waiting list.
In the meantime though, I’ll carry on as usual and dream about the day when I’ll be able to bound out of bed in the morning.