For various reasons I have a port-a-catch fitted, to recieve intravenous nutrition and medication. This weekend it has been a pain in the backside. On Friday night we struggled to access it, but succeeded, come Saturday it was refusing to work at all. Cue a trip to everyone’s favourite place, A&E. It’s busy at the best of time, but on a Saturday night it’s awful. When I was eventually seen, we had a bit of a discussion about the best thing to do with me. The doctors wanted to admit me, but I managed to convince them to let me go home with a cannula in my arm, and some glucose drips, to alternate with the saline I have at home. The doctors were happy with my plan, although I did get told off for worrying about their bed situation. One of my points was that I’d save them a bed, but was told in no uncertain terms that I shouldn’t be worrying about that!!
Next up we had to convince the nurses, who were a lot less happy about the plan, but I eventually won them around. I escaped at full speed before anyone changed their mind!!
Part of the reason I was so desperate to escape was that I was due to go on a tour of the disability sports and arts festival, with paralympian Harriet Lee, who was lovely and gave me some fantastic advice, on the Sunday which I didn’t want to miss. It wasn’t ideal weather, and I’d only had 3.5 hours sleep, so wasn’t quite on top form, but it was really interesting and I did grown up things like networking.
The rest of Sunday was spent making the most of my bendy wrist meaning I could connect and disconnect the cannula in my elbow, and sleeping.
I had only been allowed home if I promised that I would return to A&E at 9 am on Monday. I did as I was told, but the nurses were rather confused by my presence. After a bit of a wait, I was informed a doctor had contacted vascular access and they were expecting me. At vascular access, annoyingly they managed to access it just fine, and sent me away. Sunday night I managed therefore to get some TPN. Then last night the nurse went to access it, and it refused to work, so I went back to A&E, persuaded them again to just cannulate me, give me the appropriate fluids and go home. They weren’t quite so willing this time, but I was determined I wasn’t staying so I won the doctor over and his senior, the nurses were again not so keen. Lots of talk about how irregular it was, would I cope etc… My response to the last one was that I’d survived a weekend like it!! The sister was eventually won over and I escaped home for another night of very little sleep.
Which brings us to today. I’m sat in the waiting room of the vascular access unit, having already been told off/ lectured about accessing my port too often, but that was the whole point of having it so that it wouldn’t affect my training. Was kindly informed that I would get an infection soon, lovely….
Just been seen, and now waiting for an x-ray to see if it’s still in place properly.
You may wonder about the title, but I believe that I took control of the situation, I could have spent the weekend in hospital, but instead I worked with the medics to make a suitable arrangement.
Port is fine, hopefully the alcohol down it will make it behave properly. That’s the closest I’ve come to alcohol for at least a year!!
Am now sitting in another waiting room ready to have hand therapy. Hopefully things are progressing nicely, only another 5 weeks before my wires come out. Then rehab starts properly.
That means there’s less than 4 weeks until trials. My training is really not going to plan, but hopefully I can pull a miracle off. We shall see. I can only do my best given the circumstances.
This week I am working on being more conscious about my posture, I tend to slump in my chair, which I need to stop doing. I appear to have lost height due to this and generally just not being mobile.
Apologies for the length of this post, I’ve caused a lot of chaos these last few days!!
Okay, maybe not quite, but I am back training, which I’m fantastically happy about.
I’m very unfit, but that is probably not helped, by the virus one of you out there gave me, which has triggered my asthma. I cough more than someone who smokes 80 a day, so am relying on regular nebulisers to help with that and doing much better.
The virus unfortunately delayed my return to training, but I decided to give it a go on Sunday morning. Given the situation, I’m reasonably pleased with how I did. My power is still there, but my stamina is pretty poor, it has always been the weaker of the two, so no surprise it has taken the biggest hit.
People keep trying to reassure me that it’ll come back in time, but not only am I lacking in time, I also need to be fitter than I was before, in the space of four weeks….. Miracles happen don’t they?!
Regarding my hand, it was a lot easier to use the erg than I expected. Can’t do a conventional grip, (unconventional suits me better!!) but splint doesn’t hurt or get in the way, which I’m relieved about.
I saw the OT about my hand today and I’m allowed to start mobilising my wrist again, three times a day. My thumb has still got wires through it, so nothing major to report there, other than I had a bit of scar massage and vibration massage on it. I did make the mistake of asking how long before I can use it normally again and was quoted as 8 weeks after wire removal, which is going to be frustrating, but it’ll be fine.
Back to hopefully double training tomorrow, with a sports massage sandwiched in between, second training session depends on timings, but hopefully I can work something about. First, however, I must sleep. I can hear my bed calling out for me!!
I sit, waiting, counting down the days until I can return to training. I don’t think Thursday can come soon enough.
I’ve missed training so much, emotionally and physically. On the water is the only time I feel free, and ‘normal’. I am so content on the river, it feels completely natural to be there, like I belong there. It is fantastic to be out of my chair. Usually the only times I’m out of my chair are when I’m in bed or in the bath, so not many of my waking hours.
Physically I’ve missed the exercise, I’ve had nowhere to expend my energy, and I’ve found that I’ve done an awful lot of sleeping, which has been driving me insane and doesn’t make any sense. I find the more I sleep, the more I want to sleep, which is highly counterproductive. I need to retrain my body into living on normal/minimal amounts of sleep.
I’ve been a lot more stressed and irritable as well without training, nowhere to channel my anger, or let my frustration out. This has caused me to lash out verbally at people, and generally be grumpy. I wonder how I managed to cope when I wasn’t doing any sport for years. I guess I must have got used to it.
I’ve just been to have my splint re-moulded and it’s a lot more snug and supportive, I wonder how long it will be before I break it, I’m useless with them. I have been known to break them before I left clinic!!
Training won’t be as easy with my splint on, but that’s a small price to pay to get back to what I love.
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…