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…
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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.
I love race days, the chance to see if all the work I’ve been putting in has paid off, plus there’s the adrenaline rush. Race days also scare the beejeezes out of me, I’m inherently competitive, so the prospect of not winning, is unpleasant, albeit not as much as the prospect of not doing myself justice. I can live without winning, but trying to console ones self about not winning when you know you could have done better is immensely difficult.
My biggest opponent will always be myself. I learnt that a long time ago, I’ve always been self critical, but I need to learn to be realistic as well. I need to try to remember that this is a learning curve, and there’s no point beating myself up about things that went wrong. I was taught that the only mistakes we make are when we don’t learn from an experience.
This is my first race after my surgery, so it’ll be fantastic to get to do some high speed work done again, just not sure how fit I actually am. I guess I’ll find out tomorrow. I’m more nervous as well than usual, as I’m trying out a new piece of kit. Generally trying out a new bit of kit for the first time on race day is a *bad* idea, but I’m not sure I’d actually complete the race without it, so wish me luck!!
I shall spend my evening relaxing, getting mentally prepared, and resting lots. I’ll hopefully update tomorrow.
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.
New year, new start? Not in my world. I had the misfortune to end up in A&E at 1am New Years Day. I hasten to add, that it was not drink, or drug related, well it was kind of drug related, in that I couldn’t access the medication that stops my right hand side kicking and shaking. I usually administer it straight into my central line, but my TPN was up, so that option was out of the window. We phoned (I was at a friend’s house party) the emergency doctors, who eventually came out, about 2 hours after we phoned them, and I’d explained to them multiple times what was wrong and what I needed, only for the GP to fail to cannulate me (apparently hadn’t done it for 7 years!!) so he phoned the paramedics, who managed to get a line in, so the GP could administer the medication. Unfortunately by this time my spasms were completely out of control, and my rescue medication wasn’t enough to stop them. After some coercing by the paramedics the GP gave diazepam, which didn’t work and I was bundled into the ambulance. It says a lot about your lifestyle when the first people you greet happy new year to are paramedics and a Doctor!!
Fortunately A&E was quiet when I arrived, apparently I timed it well. Was seen relatively quickly, the doctor came back a bit later and asked me had the medication helped, he wasn’t too impressed with my response of “what medication?”. Think someone may have been in the dog house with him for that. Was given yet more diazepam, which slowly calmed the muscles, but I was still completely with it, which I think he was rather surprised about, but clearly doesn’t know that many EDS patients don’t sedate very well!!
Eventually made it home about 4:30 am, got to bed around 5 and was meant to be up again at 7. Kind of failed to do that, which meant the care agency again went against my wishes and phoned my parents to ask what to do. I’m 27 and my parents are not my keepers, and so don’t know where I am at all times. They are meant to do use an emergency key, but apparently that was beyond the call room staff, I must have the same conversation with them every couple of months.
Carer located me finally, I did some essential stuff and then crawled back to bed. Was a very quiet day unsurprisingly.
I was back to training on Wednesday which was good, but still no time on the water, as the club is flooded still, which is a real shame, but what can we do?
I’m really giving my body clock a battering this week, after not getting to bed until after 5 on Tuesday, today I was meant to be up at 3:30 to see one of my consultants in London. Hospital transport say you have to be ready four hours in advance, so that was 5:30, and it takes two hours to get all my medical stuff done as well as standard prep stuff. In reality I woke up at 4:47 and panicked!! Thankfully although they say be ready four hours in advance, I’ve never known them come more than three hours early, so luckily I had a bit of time to spare. Consultant was wonderful as ever. He is the one who refers me to people and generally just makes sure things are ticking over aka tells others that they’re being unreasonable/ridiculous etc…
Tomorrow I start back with my PT, I think it’s going to hurt, but then as they say
No pain, No gain
Then I’m heading to the local hospital to see my orthotics specialist, I’ve lost/ had stolen one of my ankle braces, wanted to ask him about stronger ones anyway. Quick turn around and off into the city to see a friend, pick up a few bits, and have an eye test. Going somewhere new to see if I feel happier with them. Oh and then in the evening, I’m going out to a friend’s birthday, which should be nice, although given the week I’ve had an early night might be more tempting!!
It’s been a crazy week, not just on the training and medical front, but on the personal side, I’m not one for airing my laundry in public, but there’s been a lot of emotions running round.
I’m hoping for a more straightforward week next week, unlikely to happen given it’s me, but a girl can dream can’t she?!
This blog isn’t just about my progress as a rower, as I’m sure you’ll all be relieved to know. I was asked to write a piece on accessible housing, by the Papworth Trust, and thought i’d share here as it’s relevant to my life.
I moved into my current property several years ago, at a time when I could still mobilise indoors on crutches, and it did it’s job on the whole. Thankfully at the time I had a fantastic OT who had sorted out the basic equipment, and had managed to get a ramp built for me as I was deemed unsafe to get up the doorstep.
So the house was sorted, until my needs changed. Pretty much overnight I became a full time wheelchair user, and this is where the problems arose. The flat is a private rent, as there was nothing suitable in the area through the council. In an ideal world I’d have had the doors widened, shower taken out (I wasn’t giving up my bath for anything!!), kitchen adapted, but that wasn’t going to happen. Consequently every wall, door, table, appliance has been battered by my wheelchair. There are now dents where I can line up and fit through more easily, but it’s not ideal.
I haven’t moved for several reasons, firstly I thought it would just be a temporary short term need, and there are other reasons, but the underlying fact is, that council housing wouldn’t be able to provide me with exactly what I need anyway. Getting something semi suitable is hard enough, so I make do, I’ve learnt how to do things the safest way, usually as a result of a number of failed attempts, but it works.
I would dearly love to be somewhere I felt safe, and didn’t have to rely on others to do things for me, but it’s never going to happen, my requirements don’t fit the norm. I know I’m not alone in this situation, the dangerous transfers others also perform, the falls that could be prevented had there been space for the right equipment, and the malnutrition through lack of suitable kitchens.
Everyone’s accessibility needs are different and homes should be made to fit the persons needs, not the person fit the home.