Well, why not? I want to and I can.
Many people question my rationale as to why I do so much exercise, particularly whilst being on TPN. Honestly? There are so many reasons, some personal, others less so.
Number 1 is probably the most crucial sport/ exercise makes me feel good. It helps keep me strong physically, provides great escapism, and is fantastic for my mental well-being.
I think that being fit and as healthy as possible is what helps me avoid so many complications and is great for symptom management. On paper, I shouldn’t be as able as I am, but I work hard to keep strong and it seems to pay dividends.
It gives me purpose and drive, things that are so often lost with chronic health problems.
I have a reason to get out of bed every day, something to work towards. The goal constantly evolves – doing the same exercise faster, or with a heavier weight etc… it’s never completed.
I can definitely tell the difference when I’ve not been training. I am fatigued whether I train or not, but the fatigue I experience from exercise ensures I sleep well and as a result helps me manage my underlying fatigue.
It is of course a balancing act. It is imperative I listen to my body, if it’s screaming for more sleep then that’s what it gets. If I have horrific DOMs then I adjust that day’s session to manage it. If my gastro symptoms are flaring, I focus on managing them. It’s the same for any athlete, you learn to adapt and respond to what you’re feeling. For me with unstable health, it’s an invaluable skill, it means I’m aware of when things are straying from my ‘normal’, and I can be proactive about my health.
It’s also a lesson in time management, trying to fit my degree, my training, medical treatments, appointments etc.… into the day or week, without overloading it and skipping important things like rest periods as well as everything that goes into being an adult aka paperwork!!
It’s also a learning experience, there’s more to any sport than just being able to do it. You need to master the skills, practice the smallest movements until you don’t have to think about them, learn how to manage pre-competition nerves, performance anxiety, and how to remain focussed during an event and training sessions. A major competition could be years away, but you have to give your all every training session as that can be the difference between Gold and Silver come match day.
You also learn how to manage setbacks, bad sessions, poor results, and injuries, working out how to continue contributing to your goals even if you can’t train like usual.
These are very handy tools for life, whether you have a disability to manage or not.
Away from personal development and enjoyment, there is the challenging of assumptions.
I once sat at a Gala Dinner celebration post International race and during a conversation with a newly qualified dietitian, she said to me, but you can’t row if you’re on TPN. I replied that she’d seen me compete therefore it must be possible. She reconsidered her stance and said it shouldn’t be possible. When I asked her why, she said that we are meant to be too sick. I explained that the point of TPN was to facilitate me living, and that there were many people doing extraordinary things on TPN. We spoke some more and she said she was going to talk to her colleagues about me, to make sure everyone was helping their TPN patients live their dreams, and if she worked in that field in the future she’d tell her patients about me.
This isn’t about boasting or showing off, this is much more important; this is about raising awareness in the purest way, by being in the community, by taking these chance meetings to show what is possible. If my actions encourage someone else to follow their dreams, I will be ecstatic.
“Something is only impossible, until somebody makes it happen”.
It’s not just about encouraging people on TPN to be more active, it’s about the positive impact exercise, and movement can have on everyone, particularly those with chronic illnesses.
I believe so deeply in the power of movement for recovery. It can be difficult knowing how to start becoming more active again, and this is something I would really like to help people with. I would like to enable those who want to become more active learn a safe and effective way of facilitating their goals.
Many people have been exposed to bad advice, either from physiotherapists, Doctors, the Internet, other people with their condition(s), and ‘well meaning’ family and friends. This can destroy their confidence and make people unsure how to take the first steps into a more active lifestyle.
The key thing is that it needs to be person specific and targeted appropriately.
The benefits of physical activity are numerous and I want to show and help people realise that it is possible and important to become more active despite your health problems. There are so many myths to dispel and barriers to break down as part of this. Many people want quick fixes to control their symptoms, whereas physical activity has been shown to help manage so many conditions. I’m not for one minute suggesting throwing away medications, but that we need to be as proactive in helping ourselves as possible.
It is not a cure, but like many things, it’s a management tool.
That’s why I do sport.
I’ll be honest, my lead up to Henley Women’s Regatta wasn’t great. I’d missed a lot of training through illness and injury and was really not in the shape I wanted to be. To the extent that, I was seriously considering scratching about 2.5 weeks before the race. Coach wasn’t having any of it thankfully.
To have even half a chance at winning, I knew I had to stay well and get the most out of the sessions I had left.
With good fortune, I stayed well and injury free and managed to commit to some decent training. I regained speed quickly and my erg scores started to tumble. With a few days to go before I started to taper, I finally managed to produce some scores I could be relatively happy with, and the belief that I could perform started to reappear.
So I bundled everything (but the kitchen sink!!) into the car, and set off to Henley. I arrived just in time to see some of my squad mates race. I met some friends for the first time, saw some old friends, and generally had a chilled out afternoon.
I had a straight final so was only due to race Sunday afternoon, but I love Henley Women’s Regatta, so went
down for the whole weekend, it’s such a great event.
I went to prepare for an evening paddle, to discover that my foam roller, that I use under my knees in the boat had been removed and left at home. So after a quick strop, we used some bits of kit for a temporary job and I went out for a paddle. It was good to be back on the water, although being surrounded by 8’s is always a little unnerving in a single. It’s like being in a Smart Car surrounded by HGVs!! The session went mostly to plan. I found my balance (well as much as I ever have!!) and did a few starts. It seemed okay, and I managed to hold off the 4’s and 8’s coming down for a while. I did nearly capsize just before coming in when I had my right blade parallel to the boat and my left was well into arms away, but I managed to stay calm and rescue it, phew!!
We then went back to the hotel, unpacked, had food etc…. The plan was to chill out for Saturday and have an evening paddle. So I had an early night and a late morning, my PA and I went out to get some snacks, but otherwise I sat around and mooched. My parents arrived in the afternoon, which was lovely. I was going to go out for the paddle, but we decided that driving 30- 40 minutes, for a 40 minute outing and then the same back, was probably not worth it in the grand scheme of things. I wasn’t going to gain anything significant from the outing, but I could injure myself, or tire myself out so I decided to stay watching DVDs instead.
My coach was kind enough to run around the shop and get a new foam roller, whilst we acquired a saw to do the job.
I had an early night, having packed everything and prepared all my kit and drinks for the next day. Not long after I woke I got a frantic phone call from my coach saying there was a problem with the timetable and we were due to race at 1150 not 1500. This gave me less than 2 hours before I needed to boat. Many phone calls, tweets and emails were sent, and I managed to get hold of someone, who said that they’d just noticed it as well and were in the process of checking it. Thankfully 1500 was right, which is what we’d been told originally, so I had to spend some time calming down.
We arrived at 11 so had plenty of time to prepare and cut down foam rollers. I just rested and chatted until it was time to prepare and get on the water. We were heading up to the changing room when an unfortunate incident occurred, which involved me being tipped out of my wheelchair and dislocating my shoulder in the process. This resulted in a very stressed and annoyed me, with a rather wonky shoulder. I quickly put my shoulder back in and tried to get my head back into the race plan.
I boated and rowed up to the start focussing on balance and length, and remaining focussed on my race and my boat not what was going on around me. I got up to the start, and had fun with the cross wind. We were called up to attach to the stake boats. I arrived got lined up and then they decided to change the person holding it, and also move the length of the platform out as well. Eventually we were called to Attention. I quickly checked my blade position, took a focussing breath and then “GO”.
I had a good start, and moved off quickly, I powered through my first few strokes, and realised I could already see my competitor from the corner of my eye. Without losing focus, I continued to push on, by the Island I already had about 2 L clear water, so I settled into a safe rhythm, remembering my coach’s sole instruction “Don’t F*** Up” I continued to pull away, so I started to wind down a bit- I was told to keep it safe and not push on unnecessarily. I settled into a 75% pressure pace, and just kept my focus and calm, whilst trying not to get too excited. As I drew towards the finish, everyone was cheering and shouting, and suddenly I heard “Claire, you can stop rowing now” Possibly the most bizarre hooter/whistle in the world. Suddenly I realised I had won!! Yes, finally after a horrid season, I’d done it. I wound it down and continued rowing so that I could get back to the boathouse. Some people didn’t realise that I had finished racing and were shouting at me to keep going and not give up- I think I was doing arms only at the time to try and recover a bit!! As I continued rowing down people were still clapping and cheering- this is what I love about HWR, people support everyone, complete strangers came up to me to congratulate me, it’s a lovely feeling.
I got back to the boathouse and out of the boat- for once I didn’t throw up!! But I did cry instead. I know it sounds daft, but it’s been such a rubbish season, it was such a relief to have done this. I got an understated fist bump from coach and then I went to roll into a shower before getting dressed up for presentation. I discovered I was only 12 seconds off the course record and I’d only been rowing at 75% so I was a bit annoyed about that, but the time I won in was about the same time I’d won my semi in last year, so despite all my problems this year it shows I’m in better shape than I thought.
I took my parents shopping, well I mean I showed Mum lots of things I wanted and convinced her to part with her credit card for some of them!! They sadly had to go and couldn’t stay till the presentations as it’s nearly 4.5 hours for them to go back home and Mum had work the next day. My aunt and uncle stayed a little bit longer and then headed off. I was called into the presentation enclosure and we kept having to move people out of the way as otherwise I wouldn’t get to my presentation!! There was a bit of talking and speech by Naomi Riches MBE, before the presentations started.
Eventually it was my turn- after remembering to take off my brakes, I made it to the front. I’m not good in these sorts of situations, I get really nervous, but I managed to not drop the trophy which was the main thing, and remembered to try and smile as well!!
We made a quick exit after that as I was pretty tired and still had to do the drive home. We did our goodbyes and made for home.
So that’s my story of Henley Women’s Regatta. It was as ever a fun experience, and really enjoyable.
—–Please note MY autism, this is not reflective or representative or any other person with autism on the spectrum, this is my story and even then doesn’t do the complexities any justice in the slightest.——
Yesterday was World Autism Awareness Day. Yes, yet another one of those darned awareness days that come up on your timeline and you think what does it matter to me?
Well it doesn’t, not really, but it matters to some people. I’ve spoken about my opinions of awareness days previously and this one seemed to go off very quietly compared to some of the awareness events I’ve seen previously.
As for me, I’m aware of autism, 24/7, 365(6) days a year. Why? Well if you don’t know you’ve clearly never spent any time with me in person, and if you’ve not had that dubious pleasure, then I was diagnosed with an autistic spectrum disorder a few years ago.
It had been obvious to myself since I was very young that I was different, I didn’t like what the other kids were into, I was too weird, even for the weird kids. I didn’t want to be in groups, and preferred writing and studying to painting, had an obsession with reading and various other ‘normal’ things that combined with some not so ordinary things weren’t picked up on until I was in my late 20’s.
When I was at school, many still believed autism, particularly Asperger’s (as it was at the time) was a male only disorder; they had just about mastered checking for dyslexia but anything more than that was beyond them.
As a girl, I presented typically, but here is the crucial difference, I presented typically for a female- unfortunately this is still a very much unresearched area, but there appears to be key differences. Even my Special Education Needs trained mother missed the diagnosis. Looking back she says she can see it clearly now even from when I was a tiny baby who wouldn’t be left with anyone other than my parents, but even then didn’t really want to be with them. It was much more complex than that, but hopefully you get the drift.
I never hugged on a regular basis until I went to uni at 18. I had never settled at school, I loved getting an education, but had very little interest in my peers. Uni was a change in so many ways. The perks of going to Cambridge are numerous, but one is that research has shown it to have a higher than average percentage of people with ASD, which is hardly surprising considering what you need to achieve to get in there!! I was finally in a place where I could be myself, a very strange experience and hugely overwhelming, those first few days of each new year were particularly hard as you had to get used to change all over again.
That’s all in the past though, the point of this is what it means to me to be autistic day to day. Well I don’t know. I’m not autistic day to day, I’m me every day. Autism is just the way my brain is programmed, and therefore it’s all I’ve ever known. It’s impossible to know if something is a Claire-ism, a quirk like any neurotypical person has, or because I’m autistic. Day to day I’m used to how things are. My head is like a constantly whirring motor seeing all the little things you miss, hearing the conversation you’re meant to, plus those all around you, hearing every noise (I had to ban cat scarer devices), all the idiosyncrasies you don’t register, ever seen Monk? Well my brain is like that all the time, just with less germ phobia!! It’s exhausting, spotting things that aren’t done correctly, and by correctly, I mean in the manner which befits my brains working. Ever had an argument with a 29 year old about putting the wrong sock on first- yes it does matter. Maybe not to you, but in the rules of my world it does.
For me those rules aren’t optional. People talk about it like it’s an anxiety disorder where something horrendous will happen if things don’t occur in a particular order, but that’s not the case, the rules are put in place by my brain and are so that things sit neat and ordered in my head, they stop some of the chaos waving it’s arms so violently around, but if they are broken, although I may have a melt-down, I know there’s nothing going to go wrong because of it is. A break from the never ending chaos that goes on in there would be strange and probably unsettling, after all I hate change!!
The only time I get a calm in my midst is when I’m out on the river, I don’t know what it is about rowing as such, but the escape I get whilst I’m rowing is fantastic. Maybe it’s because I can focus on the structure, there’s no space in my head for all the little “Me, Me, Me’s” waving their arms around, there’s space for technique and that’s about it.
Autism is one of my newest diagnoses, although along with my genetic illnesses, I’ve had to live with it the longest. It’s strange as although it has a massive impact on me generally, I find it is one of the least complex- it isn’t going to give me sudden breathing difficulties or sepsis, for me to live with. Maybe it’s because I’m so used to dealing with it, and dealing with it unaided. I’ve had no medical input in that respect since diagnosis, and of course no support throughout school. There are many things I’d like to improve in respect to my ASD, but there’s no funding or networks in place to deal with it, so I just make do. If people can’t handle my autism, then that’s their loss, because beneath the crazy exterior of my ASD, is just a crazy, human being like the rest of you. Oh and you miss out on the penguins, all the penguins.
I try not to spend too much time in my own head, but a few conversations I’ve had recently have caused me to do some reflecting.
I recall a Paralympian being asked
Did you always dream of being a Paralympian?
No, not before my accident!!
Nobody born healthy plans to be a Paralympian, let alone disabled. It certainly wasn’t on my career plan at any age. I grew up, like so many, with no indication of what lay ahead for me. So how did I get here? Could I have done things differently? Would an earlier diagnosis have improved my prognosis? There are so many questions you can ask, but does it really matter now? I’m where I am and I’m going to make the most of it I can. Do I blame anyone for what’s happened? Was it my fault? Blaming anyone isn’t going to help, pent up anger is only going to expend precious energy, and nobody is perfect, we are not infallible. All we can do is learn from any perceived errors, and try to ensure they’re not repeated.
I write the rest of this from a position I’d become relatively unaccustomed to. I’m back in hospital after an emergency admission, just waiting to get my discharge letter.
Last night was a very long and drawn out procedure, including being told I could wait six hours for the OoH’s doctor, when the EMT who arrived first on the scene quickly identified that I couldn’t wait that long. Whilst we waited for the paramedics we chatted, amongst things he said that I must have done all the
why me? Why did this happen to me?
But in reality, no I didn’t. I was too busy trying to live the best life I could and as someone else once said,
why not me? What makes someone so special that they can avoid their share of difficulties?
I’ve now escaped hospital, after one of my more traumatic hospital experiences. The nurses were fantastic, I was looked after really well, but the actual situation was quite unnerving.
Anyway back to the original point, I’ve known from a very young age that I was different. I didn’t do the same things other children were doing. I never really fitted in, but because I was succeeding at school, (I was fortunate to have a strong interest in academia from very early on) nobody really paid much attention to my social interaction and other difficulties. It certainly made things more difficult as I went through school, but would having a diagnosis in childhood made things better? Or would it have just segregated me even further? I suspected in my teens I had Aspergers, but I didn’t know how to pursue it, and debated whether I wanted to be labelled, when I was having a hard enough time with the bullies on a daily basis.
I also remember being in pain from about the age of five. I particularly remember doing a vault at gymnastics and my knees made a huge cracking noise, which sent pain rushing down my legs. It was always passed off as growing pains, and I spent a lot of time with various bits of me strapped or in tubigrip. There were so many signs that there was something going on, like ‘spraining’ my wrist using a cookie cutter. That ‘sprain’ turned out to be a tear in my scapholunate ligament, which took doctors about 10 years to actually do something about. I was fortunate to be referred to a fantastic plastic surgeon in my early twenties who realised when he could manipulate the bones independently there was clearly something wrong. I owe so much of my hand function to him. As the tear had been left so long other problems had developed, including a thumb joint that spent more time in a dislocated position than it did in place. There was also the time I fell off an inch high curb, and tore ligaments in my ankle- that was a pretty lovely looking bruise!! These are just a few of the incidents. Warning signs were missed, none of my dive or gym coaches questioned all the strapping and injuries that in all honesty I couldn’t explain. I was identified as hypermobile, but that was it. I was doing sports that welcomed flexibility so I guess they weren’t too worried. I guess I do feel a bit let down by them, they just kept pushing and pushing, and didn’t worry that I got pain from doing any high board work. I hope situations like that now come under welfare concerns.
In general I was passed off as clumsy and a bit of a hypochondriac. The GP was fairly useless, we turned up in an emergency as my knees had completely locked straight after being outside for a fire drill. His response “don’t go out in the cold”, very helpful(!). I bumbled on like this for years, spending a lot of time in pain especially with the aforementioned wrist. I used to get in trouble at school as my writing changed style regularly, but it changed dependent on pain and strapping positions. Exams were a nightmare, so much pain whilst writing essays, but I was a case of ‘suck it up, and get on with it’. I passed them all and eventually started university.
I could spend time wondering if things wouldn’t have reached this stage had there been an earlier diagnosis. Instead I realise that the lack of any diagnosis from either aspect taught me to be resilient, determined, physically and mentally tough, motivated and generally it has caused me to be who I am, for which I’m grateful. The skills it taught may never have developed to such an extent had I not been through the situations I’ve been through. I honestly don’t know if I would change how I did things as I could have ended up being a very different person, and I’ve kind of grown to quite like me.
University brought more problems- I took up rowing, which my knees didn’t really agree with. I later discovered they were maltracking which was causing the pain. A physio put me back together on regular occasions, and again identified hypermobility, but said the knee pain was because my bones had grown faster than my muscles, so my knee caps weren’t sitting quite right. He diagnosed me with a few things he could tell I’d had previously, but still nobody took me very seriously. I learnt the art of strapping joints in place with tape, and that was it really.
Things started getting a lot more complicated when I went back to uni for my second year, a chapter of my life which was the beginning of the 5 years I spent with a misdiagnosis.
That however is another long story, but as I said originally none of this was in the plan, but nobody has a life that runs to plan, if they tell you they do, they’re lying!! We all have our obstacles to climb and hurdles to get over, some are just bigger and more plentiful than others.
I’m known for breaking things, but seem to have taken it to a new level recently. I’m currently in the VW van centre, getting my van looked at. It’s randomly losing power which is not very helpful. Hopefully it’s nothing too major and I can get it fixed quickly and get back home.
My powerchair still remains broken, I need to get that chased up, dragging myself through the car is really not good for me!
Manual chair is fixed though. I replaced the brake myself and with some fiddling, have managed to get it so it is working again. That’s one to me, 2 to inanimate objects.
The final major failure is my rowing seat, I’ve broken one weld and completely sheared through another bit. It needs to go back to the seat hospital. So now we need to change the seat and rails back to my old ones, which aren’t as good, but better than nothing.
Update: managed to get my chair fixed, which is rather handy. Does mean the rails have to be changed again tomorrow, but never mind!!
Car isn’t a VW fault, they believe it’s the alternative ignition that came with the hand controls. Phoned the relevant company who were adamant it wasn’t anything to do with them, until I mentioned what the guys at VW said, then suddenly it was possible it was to do with them!! They, however, haven’t rung me back so need to chase them next week.
I went back home on Thursday afternoon, until this evening. Was a nice change of scenery. Ready for a hard week of training, as I’ve been selected to row for England next weekend, assuming there is still a race. I haven’t heard much so not sure what’s going on. Fingers crossed it’s happening, I loved it last year. It’ll be good to see where I am, and where I need to be for the National Championships in October.
I’m also rather excited as I’m going to see Ash on Tuesday night, (definitely worth skiving off one session to see them!!).
Well that’s what I hoped, but in reality I seem to have spent the last month trying to work out how to get one oversized object from one part of the country to another. The last resort plan seems to be the most serious contender at the moment, which trust me is a plan that nobody wants to have to resort to, but if that’s what it takes for me to compete then that’s what I’ll do.
In other frustrating rowing news, I’ve just been informed that there isn’t another entry for my category at HWR. I’m really disappointed about this, it would have been a fantastic experience. Someone from the committee phoned me this evening to let me know. They have suggested that I could row as a demo event, to hopefully raise the profile, but it’s a long way to come just to do that. So I’ve made the suggestion that I row up a class as my times previously weren’t that much slower than the ones they did. At Bedford I was considerably closer to their times than I was the other two in my own class. I hope the committee allow this, it’s not against any para-rowing rules, so it should theoretically but okay.
Fingers crossed please. Find out tomorrow.
I haven’t updated until now, not because it was a bad experience, but purely because I’ve been too busy. I’ll start with the negatives, which won’t take long as there’s so few of them.
The decision was that I need more experience, more time to improve. A decision I completely agree with. Of course I’m disappointed I didn’t get a place, but that shows I care about what I want to do.
The positives, however, massively outweigh the negatives. The first is to realise how far I’ve come in such a short time. Coming from pretty much no fitness, and suffering from malnutrition, through having had 4 surgeries, and an awful winter weather wise, I probably got about 5 months of inconsistent training, so all these things considered, to have been invited to trials is a huge achievement for me.
I also know I didn’t row my best, which originally disappointed me, but I realised that had I given it my best and not been good enough things would be in a worse way. The weather was awful, so windy that in all honesty I was exhausted before I even got to the start. At points I’d just had to sit at the finish of the stroke and brace, otherwise I was going back down the course!! When it came to my actual time trial, I just couldn’t connect with the boat, I’m not sure why, perhaps a combination of nerves and the poor conditions, I don’t know. So it was a pretty rubbish row.
In terms of feedback, I was given a lot of useful advice and the GB coaches said they’d liaise with my club coaches, and be there if I needed anything from them. They’re basically going to keep an eye on how I progress, having asked me to attend certain events, and I’m just waiting for info about a date to gain international classification, so that we don’t have to worry about that in the future. I’m taking the experience as very much a ‘not right now’ decision, as they want me to come back next year. Going through the process in itself has been useful, as now I know what to expect so that will be one less stress next time.
I think the biggest positive is that it’s shown proof that the training I’m doing is paying off. Last July, at the British Rowing Championships, in better conditions my time was 8:38, but last weekend, despite much worse conditions I did 6:43. So nearly 2 minutes off my previous PB, which I’m really proud of. If I gain that much in 4/5 months, imagine me a year from now?!
As the saying goes, if you fall off your horse, you need to get right back on it, so I was up at 5:30 the next morning ready for training. I know where I need to be, so I’m off to give it everything I’ve got and hopefully more.
Push that little bit harder than you think you can, because you want it more.