Saturday, 28 April 2012

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.

Tuesday, 17 April 2012

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.

Sunday, 1 April 2012

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.