The Process of Piecing It Back Together (when the cracks are still visible)

A year ago I thought I was going to live in a hospital for the rest of my life & then suddenly, dramatically drop dead. My body was chucking me into severe sepsis every few weeks, I’d just about survive and it’d hit all over again. As my doctor put it, “this is your life now”.

Fast forward to now and jeez. In all of my greatest hopes and dreams, I’d never of expected to be where I am now. Out of hospital (generally!), no serious infections in almost a year and with a brand new Hickman line keeping me nourished & able to live a life that actually has some semblance of a life.

Doesn’t that mean I should stop writing about being a sick gal as I’m not one anymore? Yes, and no. I feel in a really tricky situation between “I don’t want anybody to ever associate me with my illness ever” and “okay, things are actually not perfect and I’m struggling in different ways now”. When I was in hospital, it was fine! My purpose was to be sick. That’s why I was there, that’s what I did. Now I’m piecing my life back together and making it as fulfilling as I can, but I’m building it back together with misshapen pieces.

I’m a different person to when I first got severely ill (and thank god for that or else I wouldn’t of gotten through!). I face life completely differently to how I used to, and dare I say to how most people my age do. When my life is ‘boring’ (ie. nothing terrible is happening), I am so, so bloody happy. The small things mean so much more (gah, so cheesy) – but it’s so true. And when bad things do happen, like having my jaw wired shut which happened a month or so back, I always know that bad things pass and that’s how I get through it. I’m content.

But, the cracks are still so visible. I’m still physically attached to a bag of IV nutrition for 14 hours a day, I still can’t stand for more than 10-20 seconds and I’m still in such unrelenting pain. However, these things aren’t generally what hold me back. It’s still the after effects of the trauma of last year that make me struggle mentally. I’m doing so well, but everyday I’m afraid it’ll all come tumbling down. I am scarred from the treatment of doctors and will avoid seeking assistance unless absolutely necessary. I still burst into tears when I think about how I was treated and I honestly don’t know if that’ll ever stop.

I’m getting there, though. And to celebrate, I’m getting a lotus flower tattoo in my ankle tomorrow! There’s a really lovely poem by Madisen Kuhn about lotus flowers & growing through dirt – and I think it sums up my situation really nicely.

I am so, so grateful to have this opportunity at living my life. To have lovely family and friends. To have the freedom to do as much as I can manage. To be able to make the absolute best of a not-ideal situation. I got this.

Urine trouble

Hahahahahaha what a funny pun, ya get it URINE as in YOU’RE IN trouble hahaha I need to stop writing my feelings out so late at night oops

I find it hard to believe that people wake up in the morning, not in pain and not sorting out their tubes. I’m not bitter about it, but it’s been so long that I’ve been living with these illnesses that that is all I can remember. None of my conditions have cures, or even straightforward treatment plans and I’ve known that for a very long time, but this week has made me realise that these things are maybe forever.

A little bit TMI coming up (but what do you expect from my blog after all…?), I had bladder testing done this week. Most people don’t know that since last summer I have had to begin self catheterising, and my condition deteriorated to not being able to wee by myself at all. So I had these (rather unpleasant) tests to see what was happening if anything could be done. In all honesty I was expecting a usual “the results are all normal and there is nothing wrong so we don’t know why you’re having these problems!” that I have grown to expect.

Instead, at the end of the tests, the consultant said that they could see there was no signals/ nerve impulses so my bladder physically doesn’t work, there’s no treatment or way to improve it and unless something crazy happens, it’s not going to work again. She was incredibly apologetic and told me how well I was doing coping with everything, but I was really feeling two things:

Firstly, relief. It’s not often a doctor can tell me why something isn’t working, even if there is no way of making it better. If I know that I have to deal with this problem for the rest of my life, I can adapt and not live in limbo of ‘when will things get better?’. Of course, I hope one day I’ll wake up and everything will work as normal, but I don’t have to live my life waiting for that day.

And secondly (and the emotion that is dwelling), sadness. How many organs of mine are just going to give up? Peeing, eating & walking is something that almost every 2 year old can do, let alone a young adult. It frustrates me and only now am I realising that this very well may be my life. And that sounds really silly, I have a genetic condition which obviously can’t go away (it’s in my genes!), so why does that bother me so much?!

I will continue to try and live with an almost blind sense of optimism that things will improve, because even if it’s highly unlikely, if I lose that then I think I’ve lost it altogether.  Maybe I won’t pee, but my life can improve in other ways. Socially, emotionally, mentally – ways that aren’t dependent on my physical health.

It’s a battle that I’m tiring in, to be honest. But no matter what, even if I’m exhausted from it all, I can’t stop.

Never in my life did I think I’d write such a bladder-focused blog post. But hey, life’s a shocker like that. And why shouldn’t I be able to talk about peeing, when it’s something I really miss?

In the middle.

Stuck. Very, very stuck. That’s the only word I can use to describe how I feel about life & the universe at the moment. I feel in-between where I was last year, and where I want to be in the future. And I don’t know how I get to where I want to be (or, to be honest, where I even want to be).

2018 has been great for me so far. I haven’t had a hospital admission this year, which is unheard of. I have gotten & furnished my own apartment. I’m in the process of employing personal assistants to help me lead an independent life. Things are going well. This was the best we could of hoped for.

Then surely, I’ve ‘got there’? I should be in the land of happiness and no worries and I should wake up bright and early every morning, open the curtains and thank the universe for another day… right?! Well, that’s kind of what is going through my mind at the moment. All of last year I had this great expectation that if I were able to become stable outside of hospital, my life would be perfect. I should’ve thought that over a bit more.

I feel like a bit of a liar, to be honest. I find it so incredibly hard to tell a friend how things are if the situation is anything less than hunky dorey. So I just pretend that it is. I could be lying on the floor, bent in the shape of a pretzel with hips, knees and shoulders dislocated and laugh it off. Part of it is not wanting to spread the misery, part of it is fear that they won’t want to hear it and run far, far away.

And because things have improved so much, I feel like I can’t complain about anything. My mum’s the only person who really sees what life is like – the tubes, the catheters, the spasms, the injections, the fainting, the hospital trips, the sickness, the pain… the list goes on. And to some extent, I’m glad that’s the case. My worst nightmare would be being ‘that girl who won’t stop going on about their illness’ because I know that I am so much more than that. I wish I could come to a compromise in my mind, where I could be honest with my friends but without turning it into a miserable pity party.

Essentially, things are very, very good in some respects. And very, very hard in others. And I’m trying to work out a way of accepting where I am, and not wondering if this is as good as it’s going to get. I think that happiness isn’t about expecting things to improve but finding what you need in your current situation. I found it in the darkest of places last year, and I’m reaching for it again now.

Maybe we all feel like this and I’m being overdramatic about it all. This constant, toxic feeling of wanting more, more, more. I just struggle that my ‘more’ is the ability to eat, pee, walk & exist without pain.

Love & hugs

(and apologies, I’m tired but really wanted to write so this is quite disjointed)

x

Dating with a Disability

*Gasp!* Lucy’s been out of hospital almost 3 months and this is what she gets up to?! Well, yes, ladies & gents, in my 2018 plan to become a normal 18 year old I signed up for Tinder. Before I get an influx of messages warning me of the dangerous people out on the internet – yes, I am very sensible about it!

I’m essentially writing this post (or posts, if this one goes well) as a guide to someone with a disability who’s looking at dating, and is scared to. Going on a first date is intimidating to anybody, and even more so when you’re in a wheelchair, tubes sticking out of you & a laundry list of medical conditions. And while I’m certainly no relationship guru, I’ve been going through it myself and thought I’d have a natter about it.

There are regularly posts in teen support groups for chronic illness on Facebook about dating – do I put it on my online dating profile? When do I tell them what’s going on? Will anybody talk to me with all this crap going on? It’s confusing, daunting & completely new, so it’s understandable to be concerned.

Firstly, let’s talk about profiles. These are basically 4 or 5 photos and a short bio to sum you up, so there’s not much to go on. Personally, I didn’t write anything illness related in my bio as I don’t think it’s particularly relevant. However, in my photos I’m clearly in wheelchair & ‘tubie’ in one or two which gives it away.

Next, messages. So you’ve matched with someone, you’re having a chat & then it comes up… usually in the form of “hey, I don’t want to sound like a dick and you can obviously tell me to shut up if you don’t want to tell me… but why are you in a wheelchair? I’m so sorry for asking!!!!!!!!” People will act like this is the most offensive thing you could ever say to someone. I don’t mind this question at all, if I’ve been having a decent conversation with somebody. If they’re clearly just nosy and it’s the first thing they ask, I usually ignore it.

So, how do I answer this question? I’m very aware that going into “I have this genetic condition which means I almost die all the time but haven’t yet and I dislocate 1803214 times a day and I can’t pee or eat or walk” is very, very daunting. So I usually say something along the lines of “I have a genetic condition which causes a range of different issues, over the last few years it’s put me in hospital a lot but I’m doing better now thankfully! Feel free to ask any questions, I don’t mind!” I try and keep it light-hearted but honest and open to questions, which I think is important.

Of course, you’re going to come across those who’ll be terrified of you (but you’ll run into those everywhere!), so I think it is worth sifting through to the good ‘uns. I’ve been on a few first dates so far and now looking at second dates, I’m just looking forward to see what happens next.

I think that’s enough about online dating today, next time I think I’ll write about actually dates and planning them (which is always a bit awkward when you can’t eat and they want to go on a dinner date), but there’s ways around these things!

Love,

Lucy x

Hello, hello, hellooo!

I’m pretty sure that most days in the last few months I’ve said “I should write a blog” (that, or my mum has said I should…). However, so so much has been happening that now I’m not too sure where to start. I’ve started writing so many times, but not sure how to finish. So, here goes another attempt (maybe this one’ll make it…).

I think I last wrote in October. Well, in the following months I spent another month or so in hospital, being treated for recurring blood clots/ deep vein thrombosis related to my central line. A DVT isn’t great for anyone, but with my condition and requiring my veins for lines it’s bad news. If you ‘lose’ your veins for access, you’re pretty skuppered if you end up with none left & still need artificial nutrition. I’m now being treated with daily injections to stop the clots, which hasn’t been completely successful but on we go!

The biggest change has been recommencing intestinal feeding. A quick recap as it’s been a while – I’m currently fed into my bloodstream (TPN) as using my digestive system for any kind of feeding has been unsuccessful. However with my history of infections & blood clots, TPN just isn’t possible long term, so one way or another we have to get my intestines working again.

I had a nose tube into my intestines placed again (NJ) to try again and did so for about 3 months (a month of that inpatient – which was one of the hardest to date, I may write more if I can, mentally). I cannot begin to explain how horrendously painful this is. I’m in pain all over all day, everyday and I have been for years, but this is the only pain that will make me cry, make me sick and make me pass out. I’ve never used a ’10’ on the pain scale, but this is as close as I can imagine. I’m now waiting for a permanent tube to be placed in my abdomen as the NJ came out.

It’s so hard as I know that intestinal feeding has to work. That or my life span is dramatically reduced. It’s so difficult when you feel like you should be able to just ‘take the pain’, but sometimes you just can’t. It’s really freaking hard.

So, there’s the medical update – now to the exciting things! I have started The Open University, studying for a BSc (Hons) in Natural Sciences (Biology). I haven’t done much yet, but I’m really enjoying it so far and it’s great having something to work towards again. I turn 18 years old on Tuesday (!!!) and I’m also moving into my own flat! Whaaaat?! Well, I’m moving into another apartment in the same building that I currently live in. This means that I’ll be close enough to have the support I need from my family (and I’ll also be getting carers to help me out), but independent and have my own space. So a win-win all round.

There’s been all sorts of other things going on, but that’s the main gist. If I get to the end of January without a hospital admission – 3 days to go! – that’ll be two years without a hospital admission for a whole month. I’m so happy to reach that milestone (hopefully!).

I’m realising that you don’t have to be ‘well’ to lead a good life. Things don’t need to be perfect. My health is probably worse (in some ways) than it was this time last year, but back then I was physically stuck in bed on my back. Now I have taken control of the situation, decided I wasn’t going to sit and watch this condition take over my life and do something with it, instead. I’ll always have to manage my health in more ways than most – setting up IV infusions, tube feeds and catheterising, as well as generally being in pain and exhaustion. But that’s just a hiccup along the way, some things that help me lead my life.

“Where you been at, Lucy?”

Hey y’all! Apologies it’s been longer than forever since I’ve written! It’s not that I haven’t had anything to write, or haven’t been trying to write – words are just coming out a bit ‘wrong’ at the moment.

First things first, I haven’t had sepsis since the end of August! Whaaaaat?! Not a normal celebration but hey ho, it’s a big deal. However, I have been back inpatient as I developed a blood clot as a result of my line and I’m now on evil blood thinning injections nightly (Deltaparin treatment dose… you either understand or you can’t imagine!). My big, fat arm that developed as a result of the DVT has settled but treatment must continue ‘indefinitely’ (whatever that means…!).

I’m on a fairly good plateau for me at the moment, which I refuse to jinx. However, I went to my GP today who freaked out about a few of my blood results and was shocked that nobody had told me about them, let alone done anything to help. We found out that I am severely anaemic which explains my crazy fatigue and sleeping 16 hours a day, so hopefully I can get infusions to sort that out. I had actually visited my doctor regarding a sharp, intermittent pain in my hip where I have metal work from an operation in 2011. This immediately sends alarm bells due to my history of infections, so I will be having further investigations into finding an infection.

I’m at a slightly odd place where I’m not dealing with my normal fears of sepsis at the moment, but I am dealing with knock on affects of my illnesses. I’m thankful that I’m not currently going through a monthly septic episode routine as I did earlier this year, but things are never ‘easy’ or ‘normal’.

I’m having an amazing time, mainly with my amazing mum doing fun things, like going to London to see Michael McIntyre’s Big Show being recorded and I met my favourite band Fickle Friends last week with my friends (completely changed my life) but I’m still struggling with this feeling of loneliness and isolation.

Maybe I’m being spoiled and hoping for too much, but all I want is to be around my friends, go to college, then go to university next year as I was always meant to. I struggle to relate to my friends at the moment, and I feel guilty for being that way. I live a completely different life to most people my age so trying to blend in and relate to boy drama or stressing about university applications is really bloody difficult, particularly when you’re thinking about how many veins you have left before you run out and fearing life threatening complications.

I love the people around me so much. I wouldn’t be where I am without them, and I sure as hell wouldn’t have coped these last years if it weren’t for them. I’m just afraid of going different ways in our lives.

(As my energy and ability to make coherent/ vaguely interesting sentences allows, I really want to write more frequently again. Thanks for reading, it means the world!)

x

Planning, scheming, dreaming

Okay y’all, hold your breath and cross your fingers and DON’T jinx anything… but I should be headed home from hospital tomorrow! Almost three weeks (how do admissions get so much longer than initially planned…?) and once again I’m proud to say buh-bye sepsis.

Time at home is golden time. I spent this evening re-reading my blog posts this year, and while it’s sad to look back on such difficult times, it gives me even more motivation to get out there and live my life. If my condition is going to try beat me and land me in hospital every month, I’ll just have to rise up even higher in the intermittent periods.

So now I plan, I scheme & I dream to:

• Expand Hospital Love Bundles.  So this is seriously exciting. I have some massive ideas that’ll hopefully provide ongoing support for those in similar situations to me and I can’t wait to share even more!
• Have a party. I’m planning Halloween (muahaha). Watch out…!
• Go to Disneyland. Last April while I was in hospital I ordered all the brochures and my doctors all know about my big plans… they shall happen!
• Stay at the seaside. I went to Great Yarmouth for the day with the mother and I was just so happy there. I can’t wait to go back.
• Get ready for Christmas. “Shut up Lucy, it’s August and you sound like a ridiculously early Christmas advert” I hear you think. But I just can’t wait for the build up to Christmas, to buy gifts for everyone and actually have a Christmas! (I was in hospital last year and I’m determined not to be this year!).
• Start freelance writing. So I need to look into this a lot more, but it’s something I really want to try. We’ll see!
• See Lorde in concert (!!!) Anna and I are going to see Lorde in London at the end of September and I bloody love her. I cannot wait. (Sorry Anna for the inevitable sobbing through the whole concert that’ll likely result).
• Appreciate everything. I can’t wait to see my friends outside of hospital, to take spontaneous trips out and to resume ‘normal’ life.

Here we go again!!!

x

An update // Coming to terms

Well, it’s been a while. Unfortunately, that doesn’t mean nothing has been happening (I’ve just been working out how to do another ‘oh hey I got sepsis again’ post without it sounding insanely repetitive).

But yes, I was admitted 10 days ago with sepsis once again. Fingers crossed I’ll be home in a week or so, which I’m seriously counting down the days for as there’s a creepy woman who will not stop staring at me even when I’m asleep. Uncomfortable to say the least…!

Also without going into too much detail, Ehlers Danlos has started to really interfere with   my bladder so more tubes are becoming a part of my life. I was always afraid that this would happen, but as always – when it actually happens you learn to adapt and move on.

I think one of the major things I need to come to terms with is that, as my doctor and I discussed this morning, as long as I’m on TPN I will continue to get serious infections. It’s a pretty nasty routine of ‘live your life for a couple months and then almost die and spend a few weeks in hospital’. In the past, I refused to even consider the fact I’d get another infection. But honestly? That’s ridiculous. Obviously, I hope and pray and do everything possible to prevent infections, but in EDS patients with central lines they seem to be inevitable (my doctors are actually publishing a study on this at the moment #ImAPartOfMedicalResearch). The most important thing is that we always catch sepsis early – waiting a matter of hours could cause major permanent damage or death. So far we’re doing well on this front, and I’m getting very good at knowing how sepsis feels.

Accepting this allows me to not break down (or hopefully, less so) when these horrific infections do happen, and most importantly urges me to live my life to the absolute maximum when I can. I have to make fighting for my life so frequently worth it – and so far, I think I am.

x

Unexplained.

Imagine going into hospital, spending a couple days there, before being told “this is common with Ehlers Danlos Syndrome, there’s nothing we can do, good luck.”.

Now imagine that the issue was loss of movement in your legs and feeling from your ankles down. Paralysis. 

These last couple of days have summed up what EDS is like – and how doctors treat it – quite nicely (or horribly). I’m often told my life is “overmedicalised” by doctors who don’t know me. They’re right in as much that not many teenagers set up intravenous infusions nightly, nor do they use wheelchairs. But what they fail to see is the life I’m able to lead as a result of these interventions – the weekend before I was at a festival having the best time ever. The assumptions they make are honestly disgusting. 

So, the conclusion of meeting neurology was that I’d never go back to normal, my symptoms may improve or they may get worse. I was offered no advice on one of the most terrifying things that has happened to me, and spent most of the day crying (and sleeping off morphine). 

I’m used to symptoms being unexplained. I’m used to “Ehlers Danlos?” being the best explanation I’m offered. What is completely unacceptable is the way that complex patients are given “there-can’t-be-another-thing-wrong” glare by their doctors. What is completely unacceptable is offering no support for potentially life changing symptoms – regardless of cause. 

Recovery.

I should be better by now – what’s my body playing at? Why am I not back to my (not-great-functioning-at-the-best-of-times) self yet?

That’s what I keep asking myself, and everyone keeps reminding me that it’s pretty stupid. I’m on home IV antibiotics (hooray for home!) and recovering from not one, not two but three septic infections. As my doctor so nicely described it – “there’s a zoo in your blood”. 

Usually I’m encouraged to do as much as humanely possible before my joints, pain and fatigue cry out for me to stop. But this time I’m not fighting my genetic code, I’m battling nasty infections which we luckily stopped in their tracks. My body is crying out for a break – it’s working bloody hard at keeping me alive. 

Still. I’m impatient. I’ve spent too much time on my backside as a result of all kinds of illnesses – I’m sick of being sick! I’m trying to find the fine line between recovery and not letting myself get weak again. It’s a tough one to gauge, and I just want to keep up with everyone. 

I don’t want to waste time any longer. I don’t know what’s coming next. I don’t know when sepsis will strike again. So I want to take advantage of as much as I can in this beautiful life, all whilst looking after myself – of course.