Lifelong and degenerative; I don’t accept it.

On the 22nd November 2009, I had an accident. It left me with a broken and dislocated coccyx. Five months off school and over a year of physiotherapy and acupuncture got me back to playing football at break times in my heels. I was, however, left with permanent pain. Usually just background noise that I could ignore, with an occasional bout of proper pain requiring knock out painkillers, but which didn’t take long to settle down. 

On the 13th November 2016, I woke up in agony, incapable of moving without severe pains shooting from my back into my feet. All I’d done was take my son to the Space Centre in Leicester the day before, a 45 minute drive there and back, wandering round, and the Mars simulator thing.

On the Monday, I got an emergency GP appointment where I was put on two different painkillers, one of which meant I would not be legal to drive, and referred for an MRI. 

It took me three weeks to adjust to a medication schedule that gave me enough relief to be able to get through a school day and drive. It was another 7 before I had my MRI and a further two waiting for the results.

At the beginning of February, I went out with friends from school. The next day I was in agony. All the progress I’d made had been wiped out. 

The first day of the February half term, I sat in my doctor’s surgery and cried. The words “this is lifelong and degenerative” weren’t the words I was expecting to hear. I had my diagnosis but I refused to accept it. A degenerative disc, and dural ectasia from previous trauma. There is no treatment for dural ectasia, just pain management. 

I started acupuncture, I stepped up my physio, I had a back brace and a lot of codeine. I was going to get it back to background noise.  I’d been to see Occupational Health, I’ve got an Individual Risk Assessment. My heels have been consigned to a box until I can wear them again. This will sound trivial, but for me, it was exceptionally hard. I love my heels. 

By the end of March, I was upright and mostly getting through the day without codeine, which meant I was no longer feeling permanently sick. 

I’d learnt that if I was going out, I needed a clear day after to take my highest dose of pain killers, and that it would set me back, but I was sick of cancelling plans and selling tickets. It didn’t seem fair that my life had become a balancing act just so I wouldn’t have to take a day off school. I kept going with acupuncture and physio. I was able to walk normally (with the back brace and painkillers). 

Then came SATs week. I was scribing for a child with a broken arm. 10 minutes from the end of the final maths paper, I moved in my chair. The crack my back made was so loud that the other TA and the child both looked horrified. “It’s fine, don’t worry.”

But, it wasn’t. I’m not sure quite how I got through those last 10 minutes, the rest of that day or the Friday. I know I took a lot of codeine. On the Saturday, my other half brought me breakfast in bed. He helped me to sit up. He held me while I cried. All the anger and frustration I felt came pouring out that day, and for the first time since I got my diagnosis, I realised what my GP meant by “this will not get better, it won’t just go away.”

I saw my GP the following week and he explained why sitting and writing had caused so much pain. He also changed my painkillers. The May half term was spent trying to adjust to Tramadol. It still isn’t going well. Unless I take it as soon as I get in from school, I wake up vomiting, which means my evenings are now spent virtually pain free, but very foggy headed. My weekends are tramadol three times a day, unless I have plans. But, for the first time since November, I’m managing to sleep for longer than three hours at a time.

It’s why I’m not keeping up with my blog. Not because I’m not reading great books, I am, but my reviews seem as foggy as my head, when I can find the words to do the books justice. And, I’m sleeping when I’d normally have been writing them. 

What happened 7 1/2 years ago has come back to haunt me with every move I make and it’s my biggest battle, emotionally. It’s why I refuse to accept that this will continue to affect my daily life as it currently is. I’m back in counselling for support.

I have two goals; to get off the strong painkillers and get my heels out again. I have a full physio assessment in a month where I’ll find out just how realistic they are. 

I do know one thing though. This will not be my life. I still don’t accept it. I am going to go out on a school night this week. I’m not missing Robbie Williams. I’ll take the consequences. 

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4 thoughts on “Lifelong and degenerative; I don’t accept it.

  1. mefinx says:

    I’m so sorry to hear that you are in such agony (I wonder if sitting on adult rather than child-sized chairs in school is something to try to address? I have suffered from chronic illness, both mental and physical over the last decades from time to time. Finding the balance between not giving in and accepting what cannot be altered is a challenge. And in today’s education environment the pressure to take on too much is always there. I hope you find the right way forward soon.

    Like

  2. Julie Jamison says:

    That sounds awful – my heart goes out to you! I’m not saying I understand what it’s like to have your particular condition, but as a chronic migraineur I do know something of the ups and downs of living with a chronic illness. Fair play to you for having such a positive attitude – all I can say is keep fighting and I really hope things improve for you, both psychologically and physically.

    Like

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