Thursday 13 December 2018

2 years down the road to recovery.

I've been putting writing this off, for a lot of reasons. I guess I’m over talking about it or thinking about it. The ‘accident’ has inevitably become part of who I am and I have really struggled with that for a long time, feeling like it was over shadowing who I really am and everything I’d worked so hard to achieve. I also wanted to write this when it was all over, like a big ol’ positive post, talking about getting my life back, but it has been over 2 years since the accident and the journey doesn’t seem to be nearing an end. Pain levels, expectations and prognosis’ can change everyday. 

So much has happened, lets begin with my move to South Wales, it has been the best thing I have ever done. I miss Yorkshire, no doubt, my friends and family, but I’m with the man I love and we have a dream life together despite these difficulties we face.

At first life in a new Country was going well. I was still getting sciatica type problems, shooting pains down my right leg, constant burning in my lower back where the SI joint is. The pain would leave me sofa bound for 3/4 days until it calmed down, but the pain free times in-between where getting longer, the fatigue was manageable, I was able to walk and drive more, slowly regaining my energy, independence and control over my own life.

One of the first missions of being in Wales was to find a decent physiotherapist. Chris’ friend AJay, who still kills it on a mountain bike after having numerous horrific injuries, including a broken neck, recommended a man named Alan Muckle in Bristol, saying that, if I wasn’t happy with him after the first session, he’d pay for it himself. After being in the care of some not so great therapists, I was dead excited about this recommendation, so I rang him straight away.

Alan turned out to be some sort of wizard! His first session left Chris and I in wonderment, he talked our ear off and got me to do some bizarre looking moves, but he was confident and very knowledgeable about the human body. He really helped me understand fully, how much trauma my body has been through and how I can manage the fatigue and pain. He treated all of my scars, showing us how damaged my nerves were by touching a specific area on the scars, whilst simultaneously putting force on my opposite raised arm, as he put pressure on my scar, I would lose all strength in my arm. He also found out that my right lung wasn’t working, it’d given up because of all the damage and tension on that side of my body. Getting my right lung to function took time and patience, one of the hardest things I’ve ever had to do. All I could do at first was move my rib cage, to mimic breathing, it was exhausting, shattering, I would never of imagined how hard it could be, I had to sit or lay in silence, visualising the air going into my lung, it would get so frustrating at times, but you can’t stop, you gotta breathe! My muscles would ache with every breathe. One day I felt it work! It was such a good feeling, from then on it was a case of retraining my muscle memory to keep doing it, I still catch it not inflating sometimes but most the time, I got it working real good now, this helped massively with the fatigue issues!

It was fascinating stuff, we learnt so much and still do, as he regularly texts us for updates.
He completely got rid of my sciatic/SI pain for a short time. But I then did a classic, which he’d told me not to do, I over did it. The excitement and free feeling of not being in pain was addictive, I wanted to do everything I hadn’t been able to do for the last year, I felt like I was healed. Sessions with Al became less frequent as I improved and constantly battled to reign in my new found energy.

Not being in work was horrible, after tirelessly and proudly running my own business before the accident, I now felt lost and useless. An oppertunity came about at the perfect time to be a laser technician at Chris’ tattoo studio, Physical Graffiti in Cardiff. I got through my training and started to slowly build up a customer base. I couldn’t have gone back into full time work at this point, but the laser tattoo removal was only 3 days a week, I could rest and even lie down if I needed to in-between customers, it’s perfect for me and gave me a sense of purpose again, Illustration jobs also came slowly rolling back in, along with my creative mojo. I was working again and stoked, walking down the street with my head held high!

It was approaching DTRA flat track racing season, Chris competed last year and killed it, I was itching to get involved, after having a go a few years back and loving it! We had a few practice sessions one at Peter Boasts, champion flat track school, thanks to Indian, who sponsored Chris this year. Before the accident I would have been so excited about this, but my nerves threw me into a wreck, I tried to shift using my brake pedal?!?! I was a hot mess, but once I chilled out I enjoyed it, although I bailed early cos I started hurting. 

Getting my flow back at Boasties

I entered the first round of DTRA at Kings Lynn on a mini bike I’d loaned from the Greenfield team, but again, my nerves just went crazy, never known nerves like it, crippling. I just couldn’t function, I was lined up ready to go out and couldn’t start the bike, I was in such a kerfuffle that I hadn’t switched the fuel on, Caylee Hankins spotted it and sorted it but the bike still wouldn’t start,  luckily George pickering came over super chilled and started it, then, as we was going out, I went to shift and my steel shoe got caught on my lever, I fell into Amy of FastWomen but again George came over and sorted it, what a palaver! Anyway, I got out there, it was a wet day, which I love and I somehow managed to bag me a 1st!


Photo of me after the win by my big bro, who came along to support team FTH

Thank you to the DTRA fam for being so good with me.
I understand that the nerves were my bodies way of telling me to stop, and it makes sense when I find out later what’s wrong with me. Some may think it was dumb of me to enter but my mind really needed to do that race, it was very important for me, to know that I still get that buzz, still get that adrenaline and hadn’t developed ‘THE FEAR’!

However, the next round didn’t go so well, the pain eventually caught up with me, although I guess it was nice of it to give me a break! I’d been on these super strong pain killers called Gapapentin, to help with the sciatic pain, for a good few weeks, taking them at specific times in the day. The race was an early one and my medication hadn’t had chance to kick in, my brain was frazzled, I felt weak and disorientated as well as in pain, so I gave up  DTRA for the year with a heavy heart.

The SI pain had come back like a hot knife constantly wedged in the joint, the sciatica and the fatigue was becoming unbearable, the increasing dosage of Gapapentine took the edge of the pain but it turned my mind into mush, my appetite fading as my stomach was full of nasty meds. my body and my mind were drifting apart at a rate of knots and felt like they well and truly hated each other. My mind wanted to get up, stop sitting around and get on with it, but my body, well my body was on lock down, with the stubbornness of a teenager and the aches of a 90year old.

It would take me a good 2/3 hours to get moving in the morning, once I did, I had another 2/3 hour window where I could get a few things done, mainly getting dressed, getting a wash, trying to do a tiny amount of physio and then cook some food, trying to make sure I was eating enough. I had to miss work on numerous occasions due to fatigue, if I was at work I’d sleep in-between customers. I’d get home and that was it, I’d crash and my body would cease up, every muscle, every joint would be agony, I’d fall to sleep unknowingly on the couch, then wake up completely baffled and upset from the confusion, like I was awake, then I just passed out? It was horrible.

We had some emergency sessions with Al, he really helped my mentality giving me lots of calming techniques whilst doing what he could for my SI joint. He explained how my body is in constant Trauma, it still thinks the SI is separated and is going into survival mode over and over again. I was doing the moves he’d given me to try reconnect the nervous path that had been ripped apart during the accident, teaching my body that it is OK. When your body is in such a state, everything is too much, your senses become overwhelmed, I had to sit in a dark room with no sound, light was too bright, noise was too loud, moving was too painful. It felt like everything I loved was being stripped away from me , I couldn’t focus on drawing, no more riding motorcycles, no more driving, no more walking, no more exercising, I was finding socialising near impossible, conversations where hard to focus on, if something didn’t go to plan I’d freak out, I was having some sort of weird personality crisis, which was reflected externally from my frequent change of hair colour, haha. I was also getting mad anxiety, paranoia and becoming more and more introvert, my body was just screaming for help! 
One of the saddest things for me was not being able to listen to music, a few of you may know that I’ve been in bands, I’ve managed music venues, put on gigs, I would go to gigs almost every night of the week and now I was reduced to not even being able to listen to my favourite songs at home, it would exhaust me, emotionally overwhelm me and frustrate me all at the same time and cloud my already stormy brain. Aretha Franklin got me through the long, lonely, painful nights during my stay in hospital but even she couldn’t help me now, music was hurting my head and that was crushing my heart, all the things that would usually get me through difficult times were fading fast. Difficult being an understatement for those times.

Alan was still doing everything he could to help, I will be forever grateful to him and would highly recommend him to anyone suffering from complicated nerve or muscular injuries. 
However, as we later found out, it wasn’t muscular or nerve problems.

I was also in regular communication with my solicitors and had had an offer for settlement made by the opposing firm. This isn’t something I can discuss yet but trust me, it is a complete head fuck, mind melter, soul destroyer, especially when you’re feeling so vulnerable . I guess I’ll go into that one day when the dust has settled.

I stopped at my parents for a few days, they got to see how life was for me and seemed pretty shocked at how exhausted I was and how much my pain was ruling my life. Dad and I discussed the injuries and all that I had learnt from Al at length and believed me, (unlike numerous professionals I had spoken too in the past couple of years) that the root of my pain was coming from the screw in my SI. Dad has a very good knowledge of anatomy being a butcher and I guess so do I, having grown up around carcasses. I knew it was the screw in my SI, I could feel it, every second of every day. I wanted it removed, I wanted all the metal removed! I was scared it was poisoning me or my body was rejecting it, I was desperate.
He went on to find pelvic surgeons as my original surgeon was being pretty unhelpful and actually said to me that I was fine, forget the accident ever happened and get on with my life. Yep. So anyway, Dads research lead us to MR Mohanty, a specialist in the SI joint, who happened to practice in Cardiff. 

I booked in with Mr Mohanty immediately and he was quick to diagnose the problem at first glance of my X-rays. So, let me tell you  a bit about the SI joint or sacroiliac joint before I continue. The SI joint connects your pelvis to your spine and is held together by strong ligaments. my accident, as well as causing multiple fractures, turning my pelvis into a sack of marbles, also ripped apart my right SI joint. On the day of my accident, I had my first surgery to stabilise my pelvis, using a big shiny external fixation across the width of my hips and a screw to hold my SI in place. My second surgery was to remove and replace the external fixation with internal screws and plates, as well as stitching up my wounds from the accident.

Mr Mohanty could see instantly that the screw used to secure my SI joint in the initial surgery, was a trauma screw and should have only been temporary.


The troublesome screw circled in my X-ray, that caused me 2 years of Pain

Now put your two fists together, imagining thats your SI joint, it is designed to behave like suspension, when you move, your SI joint moves using natures clever and lovely cushioning of ligaments, now image those ligaments have been ripped apart and will never come back. Then imagine putting one screw through the middle of that joint, a screw that has no thread where the actual joint is (pointed out to me by Mr Mohanty) and then try imagine your body, functioning, or trying to, with that joint loosely held together with one screw enabling it to pivot, grinding bone on bone every time you move. Explains why I was in agony and my body was in constant trauma. My poor, poor body.

Mr Mohanty recommended fusion of the SI Joint, he wanted to take the temporary screw out and replace it with 3 new implants designed by himself called the ifuse implants, they’re triangular shaped tubes made from titanium, designed to allow the bone to grow around them, thus fusing the joint over time. 


This is not my butt! It is a diagram of the proposed operation

Now Mr Mohanty is amazing, but I was losing all faith in the medical system at this point, so Dad and I researched it. I told my dad I didn’t think it was a good idea because upon researching I had found that after SI fusion, people suffered from pain in other surrounding areas, such as the lower back or hip, however he swiftly brought my attention to the fact I was reading up on people with SI syndrome, basically these people hadn’t had their SI ripped apart in an accident like myself, meaning I didn’t really have much of a choice.

It was the brutal truth, I confirmed with Mr Mohanty that I’d like to proceed and within a couple of weeks I was under the knife again, however I did postpone surgery so that I could go to The Hook up, see some friends and enjoy one last little ride on my chopper before the end of summer and Im so glad I did, it was the perfect weekend. 


Last ride of the year, on our way to The Hook Up.

I was super nervous about the op, it knocked me big time, the recovery was awful, I was so, so weak to begin with, not like when I had the accident and I was strong and full of fight, I was already empty, out of strength and well out of positivity at the time of the op.
I couldn’t move, I was in agony and so sick from the anaesthetic, I was on 24 tablets a day plus injections again in my tummy, to thin my blood, so I didn’t develop blood clots as a result of being inactive, just like before when I was in the wheelchair. I was lucky enough to have Chris, who knew the drill, cooking my meals for me, making sure I had everything I needed, carrying me about the house. I also had friends and family come care for me, allowing Chris to have a break, so grateful to them, as I couldn’t do anything myself at that point. it was yet another very tough time and I couldn’t help thinking how much more do I have to endure? I was beginning to feel defeated.


As the weeks passed,I noticed that I wasn’t feeling the sciatic style nerve pain any more, my brain was clearer, I wasn’t as fatigued. The pain that I was feeling made sense now. It was as if I was starting the journey all over again, as if this is how it should have been after the accident in 2016, I was broken, it hurt, but thats fine, I can handle that. 
I began slowly weaning myself off the meds, which was gross, night sweats, fever symptoms, very, very unhappy guts, shivers, dry mouth, depression. I will admit I needed them, I couldn’t of got through it without them, but after being so against most modern medicine for all of my adult life, I felt as if I was swallowing my pride with every pill. 

As the meds left my system, the little light that was me, was glowing brighter, I had my spark back. Chris and I stared planning next years adventures, long awaited camp outs, rides in Europe and the UK on the shovels , racing flat track on the Rotax and Chris on a Harley Davidson Sportster build that he is working on. I had a new found energy, energy and clarity that I hadn’t felt for 2 years, I was back at work, 3 days a week, whilst doing illustration commissions the rest of the week, I was building up how long I could walk, planning routes around the mountains of my beautiful new home town, we was riding more and more, I was able to stay up past 6 o’clock in the evening, I was even going to the gym! Something I’ve been craving as I’ve been sat helplessly, watching my muscles waste away. The thought of no more surgery, no more pain, no more restrictions, was so freeing, I was floating on air, my future was in sight!

My sense of purpose was returning, I was no longer defined by the ‘accident’ I was becoming myself again, Sami Graystone the illustrator, motorcycle rider, singer/song writer ,pro active, happy, glowing, creative young/youngish girl. 

A couple of weeks ago, as I was enjoying a little ride out with Chris, I tweaked my right leg in the wrong direction and my health took yet another unexpected decline. No amount of rest would soothe the pain coming from my SI joint, then followed the nerve pain. 

Devastated.

Now, a lot of thoughts passed through my mind, mainly thinking this is it, the surgery hasn’t worked, I have no more options. This is me for life, unable to walk more than 5 minutes, unable to ride or drive. Our plans for next year, tossed away again, no racing, no chopper adventures, more resting, exhaustion, feeling shitty and searching for answers.

Since I tweaked my leg, Ive had emergency appointments with my surgeon, all is good with the bones. So that’s one stress I don’t have to think about. Then it was up to the Physio team, they’ve diagnosed me with ‘piriformis syndrome’ an uncommon neuromuscular disorder, that has developed from me being in the wheelchair and on crutches for so long. It is very painful, causing your leg to give way underneath you, sciatic pain and generally a massive literal pain in the ass! 

But, it is treatable. Although my current physiotherapist is finding it hard to treat me, as I am in too much pain, so he has referred me for acupuncture, hopefully calming the area so eventually we can begin full treatment. I’m finally having CBT, cognitive behavioural therapy, to help me mentally deal with what I’ve been through, the impact its had on my life, my future and how to deal with chronic pain.
Unfortunately Im back on the drugs, but no where near as many as before, they really help me forget about the pain enabling me to get a bit more out of my day, when they wear off, my body goes into melt down again and ceases up, but my mind is getting a lot better, so I can prepare for that and be ok with it. Baths and hot water bottles are everything!

Having to quit next years plans, again, has been devastating, I really thought the operation had sorted me out, I mean it has sorted my SI, which is awesome, but I guess Ive had to get my head around the fact that the accident is most definitely  a part of me, and may affect me for the rest of my life, the damage was very significant and I need to remember that, respecting my body and how it has overcome so much, instead of hating it for not doing what I want. In my head, after the accident, I genuinely thought I could just bounce back, like nothing had happened, but in reality, Im not going to be able to do a lot of the things I want to do ever again. However, I try to focus on the things I can do. 

Huge thanks to my parents for stepping in when I needed them and to Chris for being with me, this affects us both every single day, he is with me through all of the ups and downs, he keeps our bikes running smooth and looking dope, whilst working full time, always on with new creative endeavours, runs FTH, races Flat track and still has plenty of time for me. Some people crumble in these testing times but he is one of those that stays solid as a rock! I don’t believe in luck, but I feel very lucky to have him in my life.


Chris and I repping our brand FTH and our Bikes, photo by MIGPIN

Feel free to message me if you are going through anything remotely similar and would like a chat or if you’re further down the line than myself and have advice that may help me, than please fire away!

Strength and positivity, focus and perseverance, love and be loved!

Sami G