That’s the reality. Three years ago I started TPN, it saved my life, and completely revolutionised it.
I wrote extensively on this topic 2 years ago here: https://rowrowyourboat.wordpress.com/2013/06/01/365-little-days-later-why-pinnt-means-so-much-to-me/
Now I am back, this time to talk about fundraising for them. They’ve stuck by me as every challenge has cropped up, have introduced me to some fantastic friends and some random people who I love dearly. I have three years of additional life to celebrate, and I have definitely done some living in those years.
On Sunday I take on the Bupa Westminster Mile- don’t worry I haven’t suddenly learnt to walk, I took up wheelchair racing as part of my cross-training, so I thought why not give it a go?! It’s time to repay the favour, to ensure they can continue their fabulous work, plus I get to race (can take the rower off the water, but can’t take the racing mentality away!!).
I only started training for wheelchair racing in February and much has been punctuated by niggles and meetings getting in the way, so I’ve not had many sessions, and seem to have the worrying knack of tipping my chair, including in my first ever race!!
I’ve now done 2 competitions and 7 events across those, I’m not fast, but I’m having fun- although I have collected 5 medals and a third place out of those.
I hope anyone reading this will take time to read my fundraising page http://www.virginmoneygiving.com/claireconnon where I wax lyrical about the work PINNT do, and consider sharing and supporting this fantastic charity and my crazy endeavour!!
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.
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.
So many things have happened during my few weeks away. Originally there was meant to be a post between this and the last one, but life happened.
I had a bad mini race, but I shouldn’t have gone as I’d had no sleep due to trying to do the impossible within the NHS and get something from Out Of Hours when you have complex medical needs.
The most major things that have happened are to do with the raising awareness of a charity called PINNT who help support people on artificial nutrition. Being on artificial nutrition especially parenteral is fairly rare, and is a life changing and intrusive procedure that can leave you quite isolated, with most never knowing anyone else in a similar position. The charity therefore aims to bring together people across the U.K on artificial nutrition and encourage people to share knowledge and experience as well as practical problems so that people are more confident in dealing with their situation. They also try and bring people together in real life with regional groups that are generally mostly a chance to catch up with old friends, and for many a chance to do something sociable as so many social events revolve around food, and many don’t feel comfortable attending these events when they’re not eating, or worse still have had problems with restaurants refusing to allow them to sit and not eat.
They have done a number of things for me including coming to see me in hospital, answering all sorts of questions when I was undergoing transition and generally showing me positive role models when I first ventured down this path.
As a result I wanted to try and repay them someway, and so after some late night bored googling it appeared that I might have a niche story as I couldn’t find anything about others on parenteral nutrition, who were also elite athletes. Unbeknown to me PINNT had just employed a communication & PR specialist, so things worked out well in terms of timings.
I don’t think I realised my story was going to get that much attention, but after signing off on the press release, I found myself agreeing to do a radio interview. The next phone call was from someone from the radio just to get more information from me. It didn’t get off to the most auspicious as I was asked when I’d had my legs removed…..at which point I had to interject and say that I was pretty certain I still had both of my legs, although I did find myself looking down to check!! That not withstanding the interview seemed to have been well received by those who heard it, but it was weird when someone was asking me about my rowing, and I couldn’t work out how they knew about it until they explained they’d heard the interview, which was surreal as I had never quite made the mental link that people in the local community would be listening, and I’d never really done a mass announcement like that about my own private life, so it was odd, but I got good feedback so that was helpful.
I didn’t think much else would come of it, but then a few days later the PR lady phoned again and asked whether I’d consider being on a regional news programme, thankfully not in the studio, but at home looking at what TPN involves and then I did some promoting of PINNT with one of the coordinators from the East Anglia regional group. I rather left her in the lurch to deal with promoting PINNT whilst I nipped off for an unrelated appointment, then we had a mad dash across to Oundle for a quick rowing demonstration, thankfully the conditions had improved for me to go out briefly.
I was really pleased with how it turned out. There was also an online piece, which can be seen here
I was really surprised how far the news spread, when I woke up the next morning, I had people in America asking to use my image and story for a few things. It’s been a bit mad, trying to keep up with it all. I honestly never thought that so many people would be interested my story.
I’m a bit behind with everything as I had to go back into hospital, so that I could have my thumb MCP repaired, which has taken a battering over the years, with gymnastic, diving and snowboarding injuries combined with the inherent collagen problems, and I reached the end of conservative treatment, but it got to the point that I really needed it repairing. I was due to have it done in March, but a bed shortage meant it was cancelled, I then had to postpone due to nutritional problems, but it was done a week and a half ago. I’m to have internal wires for 9 weeks, but am allowed to row with light grip on an ergo after 3, not that I’m counting down the days!!
This does mean I’ll still be in wires for trials, but I’m hoping, I’ll have perfected the slightly wonky technique by then…