Here we go again

So, here I am, back in hospital, on a ward where the nurses know you so well, that the banter starts from where it was left off. It's better this way, other wards don't always understand the complexities of someone like me. Here they have the equipment I need, the knowledge, and the doctors are based here.

I've been in since last Wednesday, and am living on IV fluids, which isn't much fun- starting to lose strength and the ability to sit up, but still smiling and managing to josh with the nurses, which makes things nicer.

The obvious question is, why am I here? Well why not?! I've spent about 40 weeks in the last 2 years in hospital, so there's always a fair chance I'll be here. I'm not bitter about this, I know it's for my own good, but it  can be frustrating- I want to live and have a life but I get so far and I get reeled back in by the NHS.

I've been having problems with my surgicial jej for months, it's never been right since my first nasty infection in October, but since January I've been in increasing amounts of pain with both the stoma site and my abdomen more generally. I got to the point last Tuesday night where I just couldn't take the pain any more and switched off my pump- a machine I'm attached to 23 hours a day. There was therefore no option but to send me to Hotel NHS. I was very lucky, I happened to be looked after in A&E by a doctor I had met before on his gastro rotation, so he managed to sort me out with a PCA, and fluids, without too much difficulty.

I then did the fun trip of CDU so that I didn't breech- just got to sleep there and was moved to another ward, but not the gastro one. Somewhere in the process my shoes have been lost in this, which I'm not that impressed with, it's a good job I don't walk anyway!! I didn't realise until Friday night when I was being transferred to the gastro ward.  Must ring CDU and see if they have my shoes actually, one of the HCA's was going to ring, but I don't know if they managed to do it. I can't imagine there's much call for size 9's with an orthotic insert in them hehe!!

I had my old surgicial jej removed on Tuesday, via endoscopy- my first in over a year, which is amazing for me.  My consultant did consider just cutting it off and pushing it in, but decided that thanks to my dysmotility it probably wasn't the best idea, to be fair the idea of having to pass it was something I wasn't looking forward to so was quite relieved he opted against it.

I have some fantastic nutrition nurses, who were not happy that I was getting no nutrition, so pushed for me to have an NJ put in, so I had one put in yesterday lunchtime, it didn't even last till tea time, oops!! I think that's a record for me!! There was some discussion about PN, but the nutrition reg decided that it was too much of a risk for a few days of nutrition especially as I grew some water borne infections on my last stoma swab.

So here I am living on IV fluids, in limbo again. There are serious concerns by my team that this new tube will cause the same pain, nobody is entirely sure why it's happening, but there are a few postulations of neuropathy and hypersensitivity.  We're avoiding the "what if?" talk as I think both the gastro and I know what the answer will be, but don't want to think about it.

This of course means my MSc won't be finished this academic year- I'm getting closer to finishing it, but never quite getting there, I sometimes wonder if it'll ever happen. Most people could have done a PhD in the time it's taken me to do this!! It'll be worth it in the end though, I could have given up years ago, but I'm more stubborn than a mule :D

To add to the fun, they started my IV's this lunchtime and my vision has gone blurry- the Doctor is hoping that it's just a different presentation of one of my other conditions, so I've treated it and I'm going to try and have a nap now I've finished my essay.

Accidental Activist

Those who know me now, would never believe that prior to my genetic disorder progressing, that I was shy, quiet and the phrase "wouldn't say boo to a goose" was designed for me.


Now, however, I'm outspoken about my situation and try to use my experiences for the good of others.


One prime example of this was a fantastic opportunity to speak to the DWP about the change from Disability Living Allowance to Personal Independence Payments.  Disability rights are understandably close to my heart, not just for me, but for my aunt who has complex needs post car crash, and her partner who has a progressive neurological disorder.


The meeting was on the morning of Wednesday 4th April,  a consultation that the Papworth Trust had organised with the DWP. It was interesting to meet other people who were going to be affected by the changes, and fascinating to see the different areas that people were concerned about as part of the changes.


One of the areas I was most interested in was the "Taking Nutrition" section, as I felt that the two options given regarding artificial nutrition didn't really reflect the reality of life with a feeding tube. I was fortunate that on the table I was on, one of the three areas we had been asked to discuss included nutrition.


I had the opportunity to speak about the reality of life attached to a tube 24 hours a day, the risks, the pain, the infections, the difficulty with mobilising etc... Kieran from the DWP listened intently and wrote a mini essay on what I said. I hope that I have made a difference. He gave me a link to the DWP site that discusses the changes and the plans, and most importantly an email address so that friends in similar situations could also go and feedback their opinions.


For all those reading this, who will be affected by this either now or in the future, please take a few minutes to look at PIP and make your comments. For those with children, remember that although this may not affect them now, in a few years they will be in this situation.


I learnt a lot about how the new system will work. The forms will be a lot less complicated, as abilities will be seen as transferrable- so if you can't chop vegetables, this will be extrapolated to other skills that need this function. I think there could be a steep learning curve in that respect, as the assessors on the whole won't have these restrictions, so may not think about how a problem in one area could manifest in another, although I know  there will be training, unless you have actually faced the problems, it can be hard to completely understand the impact that it has on a number of areas of your life.


I'm glad I had the opportunity to attend this meeting, and hope that the points the meeting as a whole put forward will be incorporated into the final PIP assessment.

Abnormally Normal

So much of my life is apparently abnormal *shakes head at society's definitions*, that I had to share last night's abnormal ending to a normal day.

Saturday and Sunday are code for my body to misbehave more so than usual. Having survived the queue and the screaming at the Emergency Doctors, I returned home and did (well had a fight with) some bits and pieces to prepare for overnight and the next morning. Usually my carer would do them, but I was still stuck at the doctors so I'd had to cancel her.

I did all my usual drugs, dressings, etc..., and then came the abnormal bit....


I read some of a book, yes, a real book, not a textbook, a journal, or manual, but a real book for leisure book.


Now I adore reading, but just haven't got the time/energy/brain cells/marbles *delete as applicable* to read very often. I was quite surprised that I remembered where I'd been up to in the book. I have several books on the go, and hate the fact I don't get time to read them. I'm going to try and get to read before bed more often. I think it did improve my sleep a bit, probably helped me unwind and so on.

So yes, that's my slice of 'abnormality' in my funky little world.

Tube Tales

I've had most type of enteral nutrition tubes, and rather than ramble on about the reason why I need one, I thought I'd share some of the highlights of my experiences.

The award to the shortest tube life was 4 hours- don't give a gastric tube to someone who's stomach doesn't work properly!!

Most of my nasal jejunal tubes were vomited out, I'll never forget having to pull them out of my nose covered in sick.

Two peg-j's that need mentioning are the one that had its balloon retainer fallout, and me watching as my tube slowly wiggled out of my stomach, strange sight!!

The story I really want to tell is the peg-j that got lodged in my throat. Now if you're sitting comfortably I'll tell this bizarre tale.
A regular, at least daily occurrence in my world is vomiting, and I don't quite know how this happened, and no-one I have spoken to in the tube feed world has heard of anyone else have this happen. Anyway, back to the story, so this fateful evening, I throw up and feel something stuck in the back of my mouth, assuming it's a piece of food, I go to clear it out. Unfortunately this isn't the case, and I realise it's my jejunal extension stuck in my throat. I hope it has returned to my stomach, and work out plans for a weekend in hospital- I always break my tube on a Friday or the weekend. Unfortunately I'm sick again, and again my tube pops into my mouth. This time, i can feel something there, I'm pretty sure it's not psychological and test this, handly with some retching that again brings into my mouth. Reckoning that the forces aren't so strong with that, probably means my tube is in my throat. I decide that it's definitely going to be a weekend job at the "Hotel NHS", and turn up at A&E.

Here I see the nurse and explain my situation, she peers into my mouth, but can't see the tube, and looks at me like I've completely lost it. The doctor then turns up. He again is rather dubious of my story. He does, however, send me for an x-ray. This was the start of me being proved right clinically.

The radiographer takes the x-ray, and then asks if I know there's something lodged in my throat, and asks their colleague if they should take an image of my neck. To which I helpfully explain that as long as you can
see something in my throat that's fine, as we know what it is, just wanted to make sure it was really there.


They looked rather bemused by my calmness and nonchalance about it all. The doctor returned to explain that I was right. but didn't really know what to do about it. Thankfully the cubicle I was in, was near the doctors station so I could hear him discussing it, to a lot of disbelief by his colleagues and intrigue as they saw the x-ray.

Unfortunately they weren't sure what to do with it, and opted for the safe option of leaving it there and putting me on IV fluids. This meant a very uncomfortable weekend for me. My throat was progressively getting more and more uncomfortable and eventually managed to get someone to take it out on Monday, which was a weird sensation.

Having had it removed another problem developed when I went to endoscopy. There were no more of that type of tube available, so they suggested I had a nasal tube again!! I was not impressed with this, but managed to convince them to give me the first type of pegj I'd had, which thankfully my consultant agreed to.

It was also decided at this point that pegj's weren't working for me, and it was decided that I should have a surgical jejunostomy placed. So, that's my tale of the wandering tube. I have heard of others who managed to get theirs into their mouth, but none who got theirs stuck there. Well, I have to be different;-)

What is this "normal" you speak of?

So this post is part of the above blog hop, discussing what your "normal" is- it was primarily designed by Renata for parents of children who don't quite fit society's definition of normal, but having read so many of the blogs, so much of it rang true in my world, so I'm sharing mine.

I have never been normal, even before my medical problems really reared their heads. Nobody is normal, it's impossible to be normal, it's a statistical anomaly within a spectrum that includes everyone and their quirks and eccentricities.

I wouldn't want to be normal, I may have an unusual life, but I am happy, and living to the best of my abilities, and according to many people seem to do more than most people.

Normal for me means getting up at 6.30, just to do medication, otherwise I can't fit it all in, as there's 7/8 sessions a day mostly because of the complicated rules surrounding some of them. Medication takes up a good 2/3 hours a day as it all has to go down my surgical jejunostomy, and there's 34 medications I take daily, many multiple times a day. I don't even want to think about how many tablets that would actually equate to. It ranges from liquids, tablets to crush, capsules to open, tablets to dissolve, 2 to chew on (never sure it actually works, but no other real way around it), tapes to stick on, nasal sprays, eye drops, injections, and creams. I cover most of the routes for meds other than PR and IV, which I'm really rather happy about :)

I have carers that come in 4 times a day, and do the basic tasks of helping me get dressed, washed, get my feed set up, and then domestic tasks like ironing, sweeping the floor etc...

I have legs, but they're generally not very cooperative so I spend my days in my electric wheelchair as my hands are a bit on the dubious side. Even when my legs are a bit better, my autonomic system doesn't work properly so I can't really stand up without getting very light headed, with palpitations and other fun stuff.

I'm attached to my jejunostomy feed for 23 hours a day (I get an hour off to get in the bath [bath lift and carer aided] ), I need a lot of fluid because of my height and weight so there's no real other option. I can drink a bit, but mostly end up throwing it back up, so there's no possibility of relying on that. I'm blessed in that I can still eat small amounts, well I can eat whatever I want really it just has 'interesting' consequences, I was trying to explain my stomach problems to someone one day, and went with "well I like food, it just doesn't like me". I tend to projectile vomit eventually- the ability to swallow whatever you're trying to throw up because you're not somewhere suitable, is quite a trick, not sure I can put it on my CV though ;)

My life is split between what the medical world and outsiders think I should be doing and how I should be, and the mischief I actually get up to. Depending on what needs doing it's either hospital appt, GP appt, uni work, shopping, volunteering, gym or rowing. Yes, you did read the last two right, I spend one day a week on the river training as a rower, something I want to pursue as far as my body and talent will allow, and about 5 other days at the gym either doing weights, cardio or classes. It's not easy, and it's taken me a long time to get to this stage, and there are many set backs and it's all had to be adapted for me.

I try not to be tied to the house because of my meds- I'm lucky in that because of my chair, I already have a handy rucksack that I can drop my pump into, and then my bag of drugs (there's only enough for the next round, or maybe two as I run out of space!!).

It's really hard trying to think about what is normal for me, things that others look a bit bizarre at me for, I guess it ranges from the simple like an adapted keyboard and mouse, right through to wheelchairs, bath lifts, feeding tubes, and most things in between.

I remember someone asking me "How I cope with life?" I wasn't entirely sure what they meant by that, and I'm still not. I cope with life, by getting on with, counting my blessings, and planning my next adventure. I know I'm incredibly lucky, there are plenty out there who would dream of having my life, and it's one I'm pretty content with as these things go.

I also recently ended up trying to convince a paramedic I was in as much pain as I was complaining to be in, despite the fact I looked perfectly calm. If I reacted to the amount of pain I am in 24/7 I'd never do anything other than cry and curl up in bed, so I've learnt to cope with it, by carrying on regardless. It was only when another paramedic dislocated my thumb, I popped it back in, and mentioned it casually in passing, that she finally grasped what I was telling her. Battling with the medical profession is something I do most days. On a good day it's just a simple phone call to arrange an appointment, or check some details, other times it involves writing to your surgeon, complaint letters, chasing up paperwork, working out why someone has changed your feed order (again).

People have often told me that having health problems, is a full time job, and it can be, but it isn't without it's rewards. I have made some amazing friends through support groups and friends of friends with similar health problems (or used to, until I was re-diagnosed), but again, that's unconventional. Most of my contact with my friends is via phone, text, skype, email, Facebook etc...

I hold down many volunteer jobs, I'm doing an MSc; which is dragging on, I had two years out because I was spending too much time in hospital, but should be finished this academic year- although I've been saying that for years, oops!! Then of course there's the rowing, and to confuse matters further I want to re train and be a doctor. Many of these things I wouldn't have done had I not come down this path with my health, so I am grateful for that.

I think that covers normality for me, recently a surgeon described my thumb as "grossly abnormal" and I wonder if that's actually what outsiders consider my whole life to be. I love my life, it's amazing, unique and fulfilling what more could anyone ask for?

I think I've written quite enough, plus my carer has just shown up, so I better go and get sorted for my bath.

Who am I?

I'm an array of weird and unusual attributes, but they're what makes me who I am, and my friends assure me these are good things (which either means they like me, or it doesn't say much about their sanity!!)

I like to take every opportunity if I can, even if I don't think I'll like it. Forget glass half full, mine is usually overflowing.

Apparently I was at risk of stunted growth due to medication when I was younger, it may or may not have happened, but they've given up caring as I'm 5' 11" ;)

I have a chronic inability to take myself seriously.

I like taking challenges and coming up with mad ideas.

Nothing is ever straightforward when I'm involved. Things seem to become complicated just because I'm there. Trouble breeds trouble perhaps?!

I seem to get my best ideas in the evening, which means I have to get up and write them down as I'll never remember them in the morning.

Apparently my constant smiling drives some of my friends mad.

The worst thing you can do is tell me not to do something I want to do. If my mind is made up to do something I WILL be doing it.

I can appear quite sweet and innocent, but in fact have a very dirty and twisted mind- it's all a cunning plan to lure people into my trap.... You have been warned :)