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.
Training has been going rather well recently, I’m not as fast as I’d like, but then what athlete ever is!? But my endurance is improving, and with that should come speed, so fingers crossed it is on the right path.
I’ve been trying to look at the nutrition aspect of my training recently. This of course is a very complex area for me given that I can’t tolerate much food orally and only absorb part of what I do manage to tolerate. Both my gastrointestinal team and respiratory teams have some involvement in my nutrition, the latter because of my reflux affecting my lungs. Each have an opinion about what should and shouldn’t be done, and me being me, generally have a different plan to both of them!!
Whilst they argue it out, I’m focussing on the basics- hydration during the day being the biggest, and the focus today. I get my primary fluids overnight in my IV bag, and can only tolerate around 300ml of oral fluid a day. So I need to make that 300ml contain the most value it can. I need to consider what I need, what I can tolerate and what I have planned for the rest of the day and the next days. I can rehydrate effectively day to day with my IV fluids, but trying to quench a post-training thirst, or rehydrate after a sweaty first session are not so easy to do. It’s not practical, nor safe to hook up extra IV fluids every day due to access and de-accecessing requirements. I will do it if it’s a dire emergency but it’s not ideal in any way (for my personal situation).
Some things I tolerate better than others, and at different times I tolerate different things. Generally water is the fluid I struggle most with, so I have to avoid drinking pure water. Instead if it’s just for rehydration as opposed to for refuelling, I’ll use an electrolyte tablet added to water, as I tolerate this reasonably well. If I need calories as well as electrolytes I’ll use a carbohydrate powder mixed in and for ‘Recovery’ I’ll use a protein/carb mix, but I find that hard to digest so tend to only use that on evenings.
I am pretty obsessed with fluid balances, output/input etc as well as weight. Dehydration is known to have a massive impact on performance not only physically, but mentally. A quick search produces thousands of articles discussing the negative impact it has, as well as hopefully mentioning the dangers of overhydration, so I’ll skip the details. Dehydration also affects one of my other health problems, so I have to be extra careful- I’m still learning though, and for me it’s not an exact science as so many other things affect my stomach and its ability to tolerate oral fluids. My days of glugging down a big glass of ice cold juice are well over, although I dream of this on a hot evening, because if I over do the fluids I end up with them coming back up, and my hydration levels worse than they were before I started.
Unfortunately with the summer coming, things get that bit more complicated, as I need to find some way of getting in extra day time fluids without being able to increase what I put in. It’s difficult and we’re still balancing it out, but now I have a second line in, I can piggy-back fluids to run with TPN, without it taking any longer. I’m hoping that this will work, this is the first year I’ve tried this so fingers crossed it works out okay. The risk with this is that I end up with fluid overload and best case scenario end up taking a lot of loo breaks, the worst case heart failure. So it’s a delicate balance!!
The downside to there not being people around who have tried this before, means you’re kind of on your own out there. It’s a work in progress, and I’m hoping to work with a sports nutritionist soon, so he might have some ideas, but due to the circumstances has never worked with a TPN athlete before- at least he should know the basic nutritional stuff, I just go with common sense and try and make some educated judgement calls.
It’s now less than a week to Henley Women’s Regatta, so I’m started to plan my fluid options for that. Thankfully I’ve only got the one race, so it’s easier in terms of hydration than last year, but is very much weather dependent and based on pre-planning estimates.
Hopefully it’ll work out okay and I’ll be a nicely pre-hydrated, ready to kick butt on Sunday!!
—–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.
Sorry I’ve been away for so long. So much has happened, but I’m not going to bore you with history.
Important information though it’s my birthday today!! So I’m feeling loved and supported, and all cozy inside.
Moving swiftly on, I was inspired to start writing again as part of an agreement with the Cambridge University Sports Centre was that they would give me a membership, if I would blog for them about my road to Rio.
I went to visit the gym, as it’s the only place in Cambridge which has a bench pull system which is essential for my strength and conditioning training. I was very impressed with the setup, lots of equipment, looking well maintained, clean, and enough space. The fitness suite looked good as well, nice and smart looking, plenty of modern cardio equipment.
I was delighted when they offered me membership in exchange for some random rambles by me!! I was also happy as Matt, who I used to work with at a previous gym is also there so can help support me as he’s done some rowing and is drawing up my S&C plan at the moment.
I also got to experience the classes and went to my first Pilates class yesterday. I always feel a bit awkward turning up unannounced with no warning about my mobility impairment. The class was really good, the instructor very welcoming, and as I have done some Pilates already I was able to adapt any moves appropriately, surprisingly my core was still pretty good. The time flew by, some classes you count the minutes, but this one seemed to move quickly. Even the leopard print leggings didn’t put me off too much 😉
Overall I’m very impressed so far, although it would be better if there were lockers in the accessible changing rooms.
I hope to return to blogging more often now, but that remains to be seen!!
Marlow Regatta, for me nearly didn’t happen. Having come down to the area the night before, to ensure I was on time, relaxed and ready for it, none of those actually happened. My Sat Nav has gone on a holiday and appears not to have found its way home again, so I was relying on printed directions. I left at 9:30, for a 15 minute journey, I eventually got there at 11:10, having had to send someone to let race control know I was on my way. You wouldn’t believe the number of ways you can get lost in Slough!! Thankfully I found a vaguely helpful gentleman, who pointed me in the right direction.
The consequence of this, was that I was wheeling around at high speed to get boated in time. I just made it to the start line in time, but I wasn’t at all prepared mentally, so my race was pretty poor. I finished third and then was approached by someone from BR, who congratulated me. I was a bit surprised by that, until he explained that they hadn’t realised that two categories were racing, and that I’d actually won my event!! Sadly no medal, but I was presented with the winner of the other category’s medal, then had to give it back, but they’re going to get me one engraved and sent out to me.
I was meant to finish this entry off before I went to Henley Women’s but it didn’t quite happen. HWR was a fantastic experience, although it would have been even better if we’d had more para-rowers. I’d had some coaching by a different person between Marlow and HWR, and I was pleased to see the technical changes we’d made, I managed to produce on the day. I was the only entrant in my category, so raced up a category. I knew it was going to be difficult, but I was determined to do my best. I had a good start, on which I built, and managed to lead for the first 400 m, but as the wind increased, the difference between being able to use just your shoulders, versus the whole of the trunk, became very evident. I dug deep though, and I had nothing more to give at the end, so I can’t be disappointed with my race. It has given me things to work on, which is a good thing, especially so early in my rowing career.
I had to try and hold a coherent conversation with the umpire until we got to the landing stage, who wanted my thoughts on the event, para-rowing in general and a bit more about me. My main thought was, I’m tired, and cold!! Can’t remember what I actually said, but she seemed happy enough with my responses.
I think that’s the main races done for me for a while. There’s the National Championships, but they aren’t until October, so will probably do a few local regattas with my club in the mean time. Other than that it’s mostly training for now. Well, when I can avoid hospital appointments. Not sure how I’ve managed it, but I seem to have loads of tests at the moment, and appointments all within a few days of each other. Not my favourite past time!!
This morning the fun is radioactive egg, with toast and jam. I’ve only got an hour left. I’ve had 3 or possibly 4 scans so far, each an hour apart, so I’m quite bored!! I nearly escaped the last one, if my stomach was behaving, but there’s still quite a lot of the food left, so I’ve still got one more scan. Time has been passed talking to the other girl, who is also having the same scan. I’ve been abandoned now though. The most trying bit of the experience was having to eat the jam. I don’t like jam, let alone jam with seeds in it *shudders* seeds are a big problem for me, I’m terms of my ASD, so I’m kind of proud of my success!!
Tuesday I spent an hour trying to sleep in an MRI machine, whilst also following instructions, multitasking at its finest!! I’ve got two London consultants to see in the next 12 days and a dermatologist up here. I’d been working so hard to cut down on the number of appointments, and don’t know how I’ve managed to end up with all of these.
Right time to go and do something useful, or procrastinate until it’s time for my outing!!
After a less than auspicious start, in that, communications had failed and the people who were meant to be helping me boat, mistimed things and I missed the division I was meant to be racing in. Thankfully they let me go in the next division, which worked better for me in the long run as it meant I was with a few other adaptive rowers.
There was a bit of chaos just before I was due to race, as the competitor who was meant to go down after me, was ready ahead of me, and so it made more sense for her to go first. After rushing to get various grips and splints on, I was ready (These included the hand grip I’d only tried the day before on land, which turned out to be great).
I think my theme of the day was ‘being difficult’, I’d not only missed my own division, disordered the other division, and then I was informed I’d have to do a standing start, rather than a rolling one as the others had done. The main difference being that you’re at full power as you cross the line in the latter, as opposed to building speed from stationary, which isn’t so fast.
My race was okay, not fantastically paced, but I think the conditions were responsible for that as it felt like rowing through treacle at various points. I made the best of it though, and managed to overtake the competitor in front of me, yay, survived going under the bridge, and not into it, as had been my biggest worry!! I had lots of support, which was lovely, and as we were rowing a shorter distance the finish was just by where the rest of my squad were, so I got an extra kick to finish. Although that did mean I had to be lifted out of my boat again!! To be fair my legs are pretty duff at the best of times, so adding a body full of lactic acid into the mix never bodes well.
There was one more competitor in my category, but she was in the next division, so I didn’t know the result straight away. My parents and I nipped across the bridge for a tea and refuel, by the time we got back, all the racing had finished so mum popped upstairs to see the results, while dad helped me with my car. Adding to the category of ‘being difficult’ we discovered the stair lift up to the bathroom was dead, so I now have some pretty bruises from crawling up the stairs!!
Mum came to rejoin my dad and I and told me I hadn’t won, I was gutted, but then she read out of the times and presented me with my winners tankard!! Lucky I love her!!
So yes, my first head race win, a confidence booster as I was only 3 seconds beind the winner of the more functional category above me, and showed that the hours I’ve been putting in are paying off, which is the main thing in terms of progress and the road to Rio!!