Spine Update! November 2016

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Depending on how long you’ve been reading my blog/following me on Twitter you may or may not know that back in 2015 I fell off a horse and broke part of my spine (vertebrae T12 to be exact) and damaged other parts of it. It’s been a long 18 months with a lot of pain, scans, x-rays, physiotherapy, wheelchairs, crutches and walking very, very slowly. There wasn’t any part of my life that wasn’t impacted by the accident, I spent a lot of time (longer than I should have been) on maximum strength painkillers and spent almost 2 months in this wonderful contraption…

 

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I documented on here and on Twitter whenever I could what it was like living with my spinal injury. I learnt a lot from it and it gave me a bigger appreciation for not only being able to walk but life in general. That said, it is frustrating and the pain was indescribable and is still a huge part of my life today. BUT! I finally have some good news to share.

Last week I attended a clinic called Hampshire Backs to see a back specialist. I’d waited since September for this appointment and had an MRI (I was stuck in the machine for an hour!) determined that something would happen this time after seeing endless doctors, consultants and surgeons only for them to shrug their shoulders. My new consultant is brilliant, I’ve seen the scans and my break is fully healed, as is the damage to other parts of my spine, my nerves are clear of disruption and my spinal chord is good. All the majors were ok! We then went to on a physical examination, one that’s almost routine to me now, it took him a small amount of time to work out what was going on.

Due to the fact I’ve tried almost all the options that I have been able to at this point, including a year of physiotherapy, we were going to the next step. At some point next year I’m going into hospital to have a procedure, during which I’ll be asleep while a mix of steroids and anaesthetic will be placed in to the joints in the base of my spine. The hope is that this will give me relief, meaning I can build up muscle before it wears off and hopefully that will help the pain. IF this works then there will be talk of further procedures, if not…well we’ll cross that bridge when we come to it.

I won’t lie to you, I’m terrified of going to sleep and having people stick things into my spine but I also have a new found hope. This could be the start of me not living in constant pain and worry. I’m going forward and trying to be positive about this.

Sunday 7 – 7 Things I’ve Learnt Since Breaking My Spine

I’ve been feeling fairly emotional in the last few weeks about today. It’s been one year since breaking my spine and I just feel kind of weird about it. I broke down in tears after a particularly bad pain day, because I’m still in all this pain a year later. I just felt so fed up but then I had a hug with Ali and he reminded me of what I’ve been saying to myself for the past 12 months. I may be in pain but I’m still here and I’m still walking. What happened to me was bad enough but it could have been a lot worse! I’ve also really grown as a person in the past year, my opinion on life has changed and I’m truly grateful. I wouldn’t go as far as saying that I’m glad it happened, it changed a lot and I didn’t have the best year BUT I am really proud of myself, how I’ve reacted and what I’ve learnt.

You can have all the ridged plans you want, but life doesn’t work that way.

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Before the accident, I had a plan of how my life would go and it would go that way. I was like I’ll graduate then and I’ll go straight to my masters, then my Phd. I’ll have a house by this time, a dog, a child, another child, I WILL HAVE CONTROL. I learnt after the accident that life can throw ANYTHING at you, there was a point where I physically couldn’t walk. Of course, I didn’t plan that, no one plans almost losing the ability to walk. It made me realise that I can’t have this idea of infinite control, so I’ve let go a little. Things will happen as they do, I only have so much control.

Stop being so hard on yourself! 

Recovery was hard, super hard. I constantly get told by my physiotherapists, pain specialists, lecturers, family, Ali that I need to stop being so hard on myself. They’d remind me all the time this wasn’t a small break, this was a huge part of my body trying to fix itself. So what if I put on weight, if I didn’t get the top grade in my class. I realised striving to be great is good but I don’t have to be perfect all the time.

The human body is a beautiful and amazing thing.

For a long time after the accident and sometimes still now I resented my body. I hated that it had broken in such a simple fall, I hated the stretch marks that had bloomed all over my thighs, I hated the fact people commented on how much weight I’d put on and I hated that I didn’t fit into any of my clothes. I had a realisation at a point that I just thought my body has been doing so much work. It’s literally been healing the main pillar in my body that hold everything together, that’s amazing.

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When you’re sick enough, you can cope with your hatred of needles/hospitals/ claustrophobia. 

I still hate needles, I will always hate needles BUT when you’re sick enough (like when I was in the hospital earlier in the year) you get on with it. I still don’t like hospitals (who does) but now it’s just another place I have to go sometimes. I won’t lie having my MRI and CT scans were pretty nerve wracking and claustrophobic but the people running them understood that. Basically you can get through a lot more than you think you can.

The gym is better than any therapy session and any religion. 

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If you’d have asked me a year ago about loving the gym I would have laughed at you, now I’m stressed when I CAN’T go. The gym is a love and an obsession and I can’t wait to get back into routine and slowly keep building my muscles and be in so much better shape than I was a year ago.

It’s ok to have days where it all feels like too much. 

You’re only human, you need these days, it’s okay!

The people who stick around are the ones that are meant to be there. 

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My relationships changed a lot after the accident, I lost a lot of people and I gained some others. More than anything I learnt that the people that are meant to be there will be. I also learnt that some people are in your life for a certain amount of time and that’s okay too. I’m a firm believer in everything happens for a reason.

Spine Issues

I thought I was done crying over my spine, I guess not. Today has not been a great day in terms of my spine, what started as just sadness and anger turned into almost being quickly taken into hospital to be hooked up to pain relief. I honestly thought that with the physio, gym sessions and other things I was on the mend, although I was still in pain I thought the excruciating part of it was gone but it’s very much alive in muscle spasms. While I’m on a lot of painkillers, I’m on nothing for my muscle spasms and currently my back and all around my hip is rock hard because of it.

I’ve had to pull out of a show again tonight which I hate, I hate letting anyone down and I hate not being able to perform, possibly the worst part of recovery. I’m miserable with not being able to easily play shows. I thought this part was over, I hoped this was a thing of the past. I was getting ready, about to go load up the car when simply walking around the flat I felt a sharp pain and that was it I was out. The pain was awful, Ali and I tried to wait it out, resting and then trying to walk again but I couldn’t. I was in agony, limping heavily and sobbing. I wasn’t going anywhere tonight. That started about 4 and a half hours ago, I’m still in pain but it feels more manageable now.

On Monday, I finally made the decision to leave the Horse Riding society after talking to my mental health mentor. I really wasn’t coping mentally or physically very well and the society was what was stressing me out most, I had to let the members know today and I am not ashamed to say I cried after posting:

Hello Everyone,

I’m writing this with deep sadness. As most of you will know I was in an accident earlier in the year, breaking my spine. I’ve still got nearly 2 years of recovery time and will probably never ride again. While I’ve loved being a part of the society and your president lately my mental health has deteriorated along with more struggles and nerve damage due to my injury. It is because of this my medical team have said that it would be best for me to step down as soon as possible. Thank you to everyone who rode with me, made me smile and was a friend. I will always love this society and hope that I can still be a friend. I have handed in my notice meaning we are looking for a new president asap and I leave you in the capable hands of Daniela and Amy, while Amanda will be back from leave when she can (please contact them in relation to any questions, queries, rides).

Thank you so much for everything.

Chloe

A lot of people commented saying they were sad to see me go, to say thank you and a lot of people to say that I was brave. I still don’t think I fully understand why I’m brave? Because I was honest about the reasons? Because I stepped down to look after myself? I certainly don’t feel brave. I worry I’m letting everyone down, that if anything happens to the society it will be my fault. I worry I’ll lose friends. Now it’s done though and I really need to focus on my studies and try to remember my time with happiness, not tears.

 

10407210_10153613102758206_918236493107446324_nHappier times at the society

I still have a long way to go with my spine and tonight’s reminded me of that. I’m so lucky to have so many amazing people around me caring for me and helping me carry on going forward when times are hard. I don’t know what the future holds in terms of recovery, I’ve been told around 2 years for successful recovery but I’m not holding on to that as a solid date, after all when it first happened I was told I had a 6 week recovery, laughable now. Almost 7 months down and who knows how many to go but I will keep going, I’ll just need a little help along the way.

The Gym: Let’s do this.

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This morning I crawled out of bed after being awake for most of the night. I was tired, nervous and excited. After 7 months of not being allowed to push myself, of having to watch for signs that my legs were giving up and tense doctors appointments I got to go into a supervised gym class with a physio instructor. I wrote about my body  and its changes this week as well, which had such an incredible response from all over the world. I knew I had to write about this too but I was so nervous. I really didn’t want to have to stop after a few exercises or for my leg to go completely numb so that I fall over.

I turned up in my matching gym clothes and was the youngest one there, mostly OAPs, one man who I’d say was in his 30s with a leg injury and a woman in her 30s who came in later. To say I was self conscious was an understatement and when we started warm up I started to panic, it was painful and I couldn’t keep up very easily.  As we moved on to the machines I needed a little bit of help going through my routine.

For now it consists of 2-3 minutes on each machine/ activity and I mix them up with how I feel:

Cross Trainer

Exercise Bike level 3

Balancing on a ball board (I don’t know the proper name for this)

Marching while doing weights on a trampoline

Holding my balance on an exercise ball while lifting weights

Sitting on an exercise ball and catching a ball that is either thrown to me or I catch after throwing it at the wall

Rising on my toes (aided) holding and going back down

While this week I had to do them in burst and I could only do each one once in the session each week I will build this up and by the end of my 6 weeks I should be able to do all of them a few times in the session! I left completely covered in sweat, tired but really happy. I finally felt like I’d achieved something and although I was pretty sore I was ok, I could still walk which was a bonus. I had about an hour to get back, have a shower and be on the bus to uni, believe me a shower has never felt so good in all my life.

My next stop was the university doctor, again. I have reviews pretty regularly for my medication and generally how I’m doing. This time it was another increase in medication, this time to help me sleep. The pain in the day I’m pretty much stuck with and just have to take both the good and the bad days, do my physio and wait it out. Not sleeping because of the pain is an entirely different thing, if I don’t sleep it affects my mood, I quickly get very depressed and lose all motivation to do anything so making such I’m not kept awake all night is a priority. My dose of both my Dihydrocodine and Gabapentin have gone up at night and I have another check in two weeks.

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I also made it through my lecture without falling asleep too although I wasn’t really myself. All aside this spine focused day has given me some hope and don’t tell anyone but I actually quite liked going to the gym to start my day. When I have a bigger place/ am better I would definitely like to get a Cross trainer for me at home. So that’s the start of my gym time done and I’m kind of looking forward to next week although I may change my mind on that tomorrow…

Things get better!

Hello you lovely lot!

Yesterday I was pretty down, I’m sure a lot of you saw it, I needed to get all the stress and anxiety and worries I had written down because I promised all of you I would be honest. Today was met with another trip to Kingston Hospital and desperately hoping something would be sorted. My lovely Mum came up today to come with me so that Ali could go and record Bass with the boys.

Now I’m very slow at walking at the moment, I’m hardly walking at all. So I met my Mum for a hot chocolate on this miserable rainy day and managed to find a Sylvia Plath book to pick me up a little bit before the big appointment, but that wasn’t what was amazing about today. This morning I started reading Katie Piper’s ‘Things Get Better’ after the horrible lows and anxiety yesterday. I tweeted about it and then the BEST thing happened KATIE REPLIED! THE KATIE PIPER!!!  Now I’m a huge fan of her’s she stands for everything I want to be and believe in. It gave me the push I needed to get me through the day! I want to get real copies of all her books, especially ‘Start your day with Katie’ to help with my positivity.

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My tweet from Katie Piper!!! 🙂 

Mum and I braved the rain and wind to get the bus to the hospital (thankfully the passengers and bus drivers were really helpful today, thank you!). I was terrified. Nobody had really told me what to expect or what could happen, the last I knew they were still on the edge of debating surgery. So I sat and waited to be called through for what seemed like ages until a friendly nurse called me through. The walk down the corridor was possibly the longest and most embarrasing. It’s painful to walk so I walk with tiny steps, holding on to the wall for support and I could see the sympathy in everyone’s faces while mine was going red with both determination and embarrassment. When I finally got into the room again the nurses were great getting me settled to wait for the doctor.

I try not to cry in these situations, I want to seem like a good patient, that I appreciate what doctors do. I held my Mum’s hand while waiting and just hoped they wouldn’t go ahead with surgery. The doctor was sweet, quick and good at what he had to do. He checked me over, answered my questions and apologised for the rudeness of A&E a few days before. Apparently my legs are strong, which is a happy surprise for me, he could see how much pain I was in and tried to make it as quick as possible. I was told a back brace would be needed, stronger painkillers and a follow up appointment with x rays in 6 weeks. That was it but I felt so much more confident that he knew what he was doing. Then on to physio while the nurse thankfully ran up to put my brace request in for me (it’s special equipment that needs to be ordered in).

I only had to wait 10 minutes to see my lovely physio lady, Linda. She was funny, kind and made me feel good and didn’t push me to see what movement I had for now! I really liked her and she me so now I have physio lined up asap but the good news is I should fully recover. I’ve also been suggested a wheelchair (now purchased) for days out and NOT to push myself too hard at all, like I kind of have been.

With the good news I called around, I’m also still allowed to go to Athens! Then it was off to buy a few new pair of PJs, The Simpsons ones, The Little Mermaid, Monsters Inc, Cola ones – thank you Primark! Finally Mum, Ali and I went for some dinner before I got taken home to rest again, it had been quite a painful day.

I’m still struggling with all of this, I know how lucky I am but I’m nervous about the Brace and Wheelchair. No ones ever been able to see something wrong with me, I get worried about how people will react, even if it is temporary. It might seem silly but I’m trying to work through and not get too angry/frustrated as I have been.

So there you go! Fully up to date and hopefully my wheelchair will be here after the weekend and I’ll have news on the rest of my appointments soon. I’m still super bored and in bed most of the time so I’m coming up with new things for the blog but I’d love for you guys to chat to me too, leave me a comment, tweet me, email me! I love to hear from you all!

Being very lucky

I’d dropped off the radar for a few days from Twitter, Facebook kind of because I got some shocking news yesterday about my fall. I’d been called back into St Heliers Hospital after my GP got a letter saying that they had gotten something wrong. I spent 7 hours in hospital yesterday with people looking at my spine, checking me, taking my blood pressure, having an MRI scan (which was absolutely horrible) and waiting some more. The result? I’ve gone from being told I have nothing wrong to having three fractured vertebrae, possibly a fourth that they’re not sure about. I’m also told that they’re not sure how I’m walking around as I am, basically I’m lucky to be walking and not to have to have surgery. For now I’m in the clear for surgery as I have stable fractures, hopefully they’ll stay that way.

For the next 10 days at least there is no driving, no shows, no carrying my handbag. I’m stuck either in the flat or for little trips out. In short, I’m very lucky to be walking and to be the way I am I just have to be extremely careful. If I’m honest, I’m heartbroken more than anything. I was living and breathing for riding this year, it was always the best day of the week, Wednesday. So I feel really gutted and a bit back to square one, I’ve had to cancel Prague and shows and my parents as well as Ali had to spend hours and hours in a hospital.

So hopefully these blogs will be updated because I really don’t have much else left to do. Everyone is being so good to be at the moment and to be honest my anxiety is sky high worrying about the fractures moving and you know what? I’m really, really angry that this was missed one, I could have forgiven but three or four is just not on. Now I just have to wait to go to fracture clinic for more x rays and hopefully all will be well until then.