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!!
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.
This time last year I had just got home from hospital, on a life changing, and life limiting treatment. Today, I attended a meeting of people from the lovely charity PINNT. I hadn’t seen most of the people for at least a year. At the meeting a year ago, I was in hospital, just starting on Total Parenteral Nutrition (TPN). I escaped the ward and I went down in my PJs to see everyone. Many comments were about how unwell I looked, and how much weight I’d lost. This year, completely different, everyone was saying how well I looked, which was fantastic to hear, it’s been a long time since I’ve had that said about me.
I have been fantastically lucky, and I am hugging some wood, and crossing absolutely everything I can as I say this, but TPN, has not only saved my life, not just in the basic, “I have nutrition, now I won’t die of malnutrition” sort of thing, but it has also given me a life. Prior to being on TPN I had a fairly limited life, I needed a lot of rest, basic tasks were impossible, and I was vegetating and not really doing much else. Not only does that take a physical battering to your body, but also an emotional one, a willing brain trapped inside a failing body is not a good combination long term. Now, a year on, I’m a different person, I was on the phone to a friend last week, who commented that I seemed to have a sparkle back in my voice. As much as I tried to deny it, these last 7 years have been trying at the best, and at the worst insurmountable. I don’t like to dwell on these things, life is too short, and it really doesn’t get you anywhere, but seeing where I am now, has made me realise actually how unwell I was at various points. This just makes me even more grateful for the life I’m living now. I understand how delicate life can be, so I’m going to make the most of what I’ve got.
I try to go to as many PINNT meetings as possible, because I believe they are a fantastic charity, but more so that the meetings aren’t illness, feeding focussed. There’s none of the “woe is me” that I’ve come across with so many other charities. We share knowledge and resources, and as the saying goes “knowledge is power”, in this case not in the evil dictator “I’m going to take over the world mwahahah” style, (although I am working on world domination!!) but we all have different areas of expertise and sharing even a small point can make a huge change to someone else’s situation.
They have also been there for me whenever I’ve had questions, from deciding whether a port-a-cath or Hickman line would be better, to how to treat a stubborn Jejunal infection, anything nutrition related really. As well as popping their heads in electronically from time to time just to check whether things are going okay.
There’s also the infamous quiz we have at meetings, which usually provide plenty of entertainment, not always intentionally(!!), seeing the look on people’s faces trying to remember all the reindeer before Rudolph showed his big shiny nose off, was quite amusing. For what it’s worth It’s about as frustrating as trying to name all 7 dwarves, which I am proud to announce, I have managed to do, whilst sat in a large rowing boat, in the middle of a lake, clearly the most obvious place to be asked to do that!!
Anyway I digress, PINNT are fantastic, and do so much for all members, especially given the size of the charity. Hopefully when I’m more settled in terms of finishing my degree, I can be involved in some way. Whether they’ll have me is a different matter!!
So much can happen in a year, I never expected this change of life, but definitely the best decision made about my health for many years. Edging my way closer to giving up, this year has been difficult in many ways, but also amazing, I’m so glad I never gave up.