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.
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!!
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!!
It’s Marlow regatta, at Eton Dorney, (home to the Olympic and Paralympic rowing), this weekend. which is rather exciting. Sadly I don’t think my fitness is the best it could be. I need more stamina, it’s coming on, but not fast enough for me!! I think that the week in hospital didn’t help things. Also using my lightweight chair more is a bit of a shock to my arms!!
Currently I’m waiting to see my nutrition team, which hopefully will be okay. I have a few things to discuss and also see what they have to say about things.
Preparations for the race have started, motivational, head focussing music is on, and the cards are up. Training is starting to taper as well. I’m quite excited about the race, although it appears I’m racing up a category again, which is annoying, but a race is better than no race, even if it’s just for experience.
Not much else is happening in my world, it seems to revolve around sleeping and rowing, which is fine by me!!
As part of my preparations for next months trial, a GB coach came down to swap the rails on my current boat, to fit the ones that go with the seat I’d been set up with previously.
Sadly, the weather was far too bad to go out, but we decided to put the boat on the water, just to look at positioning. We nearly hit disaster at this point. The coach was holding the boat with his foot, suddenly a big gust of wind sent the boat on a trip along the jetty, along with the coach. I had visions of him going straight into the water, which I fear if it had happened would have been the end of my GB hopes!! Thankfully all was fine, but I was still rather nervous about drifting away when I got in.
The weather was so bad I think I could have rowed a new record time, but then never have managed to return. I went out the day before, and it was more a strength training exercise than actual rowing and it was even worse when the coach was down, so rather pleased I didn’t have to go out, even I know where to draw the line!!
Trials are now less than 2 weeks away. Someone asked me today if I was feeling ready for them. Honestly, I don’t know. I know I’ve been putting in the hours to improve, but have I done enough? I am trying to remain realistic again. Getting to this stage was unexpected, so anything more would be utterly amazing. By the time I trial I’ll only have been training properly for 11 months, 4 of which I spent in casts and splints. Don’t get me wrong, I desperately want a place on the team, to be doing what I’ve dreamt of doing, to be on the road to Rio, as they say. If I don’t get a place this year, I will work even harder to get a place next year, once I’ve set my sights on something it’s very difficult to shake me off the path.
In semi related news I spent much of last week writing applications to try and receive some funding to help with costs associated with the sport, and also for new equipment in terms of a handcycle for cross training purpose. The latter application, as well as having a judging panel, each week people can vote for their favourite applicant. The link is here I would be very grateful if you could take a minute to help my Paralympic dreams come true. Thank you.
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.
It’s feeding tube awareness week, feeding tubes are something close to my heart, quite literally!! , but do we really need to raise awareness of them? Now I’m aware this post may be controversial and in an ideal world, no one would bat an eyelid when you flash your belly for food/meds/venting, but I’m not sure raising awareness is the right way to go about it.
Most people will never come across directly someone with a feeding tube, so I wonder if it’s not the most productive use of time and energy, as most will probably disregard any info they see about it. Plus what does raising awareness actually do? We don’t need people to be aware of them, we need to educate about the realities, and the positives to them. I personally believe that the best way to do this is to get people you know talking about it. Just posting on the Internet is a bit of an abstract way to do this. There’s nothing tangible seeing photos and messages on the Internet, it needs a much more grass roots approach.
I will talk freely about my nutrition problems when it comes up in conversations etc.. People can ask questions without any prejudice and they learn, they aren’t any more aware of them as such, but have a better understanding of artificial feeding, and hopefully when they come across it again, they treat it as completely normal.
I think part of my dislike of raising awareness is that I hate some of the terminology surrounding it. The *word* “tubie” is awful. I find it dehumanising, it reduces a person down to not even their medical condition, but down to a piece of plastic that’s keeping them alive. I particularly hate it used in the phrase “I love a tubie”, no you love a person being kept alive by a tube, there’s a big difference. I would be extremely upset, angry and offended if anyone said that about me. We are all people first and foremost, and sometimes that seems to get forgotten. Okay, I am kept alive by my tube, but I’m also kept alive by my inhalers, and you don’t see people going around saying “I love an asthmay”.
I may be being a hypocrit, as I have done publicity about life on TPN, but that was in the context of my life goals and aims, and was done in part to help PINNT, who are a fabulous charity that support people who are living on artificial nutrition. I guess it’s different though, as I wasn’t trying to raise awareness as such, just talking about my life, which happens to include TPN.
I don’t want to offend anyone, and I’ve seen some good proactive posts, but I just can’t support the general awareness campaign.