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.
It was amazing. Truly inspiring- a word I try to avoid using too often, but genuinely you could feel her passion as she spoke. It was interesting hearing some of my own rational for the things I do, being spoken aloud. I can understand why she wants to return, to be the best in the world for as long as possible is a great aim in my eyes, and I don’t blame her. If you can do it then do. Life is too short to live with regrets and ‘what ifs’.
My friend I took as my assistant was sent down to the front to see if Katherine would come and see me as I couldn’t get down to her. She spent ages with me, thought my boat looked fantastic, posed for a few photos, and wrote me a good luck message!! She seemed genuinely interested in my experience and what I’d been through which was pretty cool.
I was buzzing that evening, it renewed my focus on training and reminded why I was doing what I was doing.
Sadly it didn’t last- I’ve been fighting a chest infection pretty much from November, and eventually about 3 weeks ago, I was referred urgently to a respiratory consultant as I had a very serious bacterial lung infection, I’d been in the gym that morning and the doctors weren’t entirely sure how I’d managed to keep going. I was started on home IV antibiotics, but a few days later I realised I wasn’t doing too well and was brought into hospital. I’ve been here two weeks, bored and feeling like I’m wasting a bed, but I’ve been lucky apparently so yay!!
Home today, and already planning when I can get back into training, going to start slowly building lung strength as well as generally getting stronger. I’ve been doing a bit of sports psychology reading whilst I’ve been in, as well as catching up on a few documents I needed to write. Unfortunately I’m limited on the ward as there is no Wi-Fi, only in the main concourse, which when you’re having multiple IVs, waiting to see consultants, physios, dieticians, specialist nurses, and anybody else who might need to be involved, plus having visitors (which is always awesome) and oh being pretty unwell mean work has been limited and succeeded by sleep many times!!
I’m feeling positive about my future though, these last few weeks have been a bit of a whirlwind, with a new diagnosis, and lots of new treatments to fit into my hectic schedule- Anybody know how to add a few hours into the day?! But I’m determined, this combined with my other respiratory team may actually manage to get on top of the situation and sort things out, which will make me hopefully an even more able rower when my lungs aren’t restricting me so much.
I kept being visited by people from the chaplaincy, not sure what it was about me, that attracted them (other than the first two who discovered I was the only one awake on the ward- first time I’d been awake at that time since I’d been admitted!!) but I managed to see 4 of them in the space of about a week. They were all lovely and caring, but kept telling me I’m inspiring. I’m really not, I’m not doing anything special. Just fortunate to have been given the life I have and I’m determined to make the most of it. I want to put my mark on the planet someway, make my life mean something- pretentious perhaps, but I hope that I can do something for the greater good in my life.
I am grateful, I have my family’s support, fantastic friends, a good network of support, talented HCPs involved in my care, a roof over my head, nutrition, a job I love, a decent education, I don’t go without and am in the position to do some volunteering. What more could I need? My QoL is pretty darn good when I’m out of hospital.
My life is complex, not the one I set out to life, or a path I ever expected to find myself down, but I am, and I am going to make the most of it, and make sure I appreciate it as much as I can.
Next project is getting back to health, and getting back into my degree. Wish me luck.
I received an email a couple of weeks ago, post the first set of trials, requesting that I came to meet with the medics and also have further discussions with the lead coach. In all honesty I was terrified. My medical history on paper, is complex to say the least. I knew that I had to be honest, but was worried that they would deem me to risky to take on.
After a fairly long discussion, the medic seemed happy enough that I really was much better, healthwise, than I look on paper. I’ve left her reading my most relevant medical letters, as there was a fair few, but I’ve still got two lever arches full of medical info at home!!
I then had a nervous 10 minutes whilst the doctor went to discuss me with the lead coach. The news was definitely positive. Their only request was that I’m able to push a manual wheelchair at least 800m, which currently I struggle to do, but I’m getting a much lighter manual chair so I’m confident that it will be fine. I also had to sign a load of paperwork, so that they can apply for exemptions, for my TPN and a few other medications, which are on UK doping’s banned list. A release letter was produced and signed so the chief medical officer can contact my specialists if she needs more information. We are under some time constraints as we need to get all of the paperwork done before the next round of trials.
In an ideal world I would have gone out on the lake to set up a seat that was adjusted to suit me better than the current one I use. Sadly the weather Gods weren’t in my favour, and we had to stay indoors on the rowing machine. I mostly spent the time trying to stay warm, whilst an outside door was open due to maintenance!! We spent a lot of time making adjustments to the seat, making it international standards compliant, whilst as beneficial and supportive for me as possible. It is a lot more restrictive, but I wiggle round less, so it is generally a gain, I just need to get used to it.
Hopefully the seat will be transferred to my boat at some time next week as I’m racing next Sunday, so it would be good to get used to it before hand and it would also be helpful to get some speed work done before trials.
That’s pretty much where I am now. Trying to get lots of practise in before trials which are the first weekend in May, rather than being next weekend, which is where it was originally meant to be. Getting in practise, however, is easier said and done!! I went out to training last night, took one look at the river and decided sadly that it was far too windy to go out safely. It was hard enough on Tuesday, but last night looked worse. Now to hope that it calms down by Sunday morning.
Today is my day off, which my body is very grateful for, catching up on bits and pieces, and generally getting stuff sorted out. I need to go into town, I’m hoping it isn’t too busy with all the kids off for Easter.