Never say never

Apologies for the lack of contact recently, life has just been crazy busy, but mostly in a good way.

7 years ago, my health took a massive hit when I first got sick, and people started to write me off, several years later after a huge flare up, which left me unable to use my legs, people had pretty much given up on me, told me I'd never get bettter, that I had no future, 2.5 years ago when my digestive system went wonky, all the medics gave up on me, I think my parents had too, and most people were shocked I managed to do anything at all other than stay in bed. What they didn't know and to an extent what I hadn't realised or more likely didn't want to acknowledge for fear of it not continuing was that I was recovering from the original illness that I had so many years ago. It has been subtle, so steahly, that I didn't realise it had happened until I tested it. So now although more disabled, I no longer refer to myself as sick. When this all started, I was told I'd never row again, my mum wanted to get rid of all my kit, but I made her keep all the main items, mostly for sentimental reasons, but part of me just couldn't accept I'd never do it again.

Back in October I decided to try getting back in a boat. I won't lie it was very hard at first, but absolutely wonderful to be back. Some adjustments had to be made in that I'm now an adaptive rower, arms & shoulder category.

As you may be aware I had quite a lot of time out through ill health and as a consequence it wasn't really until I started on TPN that I became well enough to take it on seriously.

Two weekends ago, I did my first race as an adaptive rower. I was the only entrant so it was a bit difficult to judge my performance.

Last weekend, however, I had my first race against someone in the same classification category as myself. The very exciting news is that I WON, in the words of the commentator I won easily :-D that saw me into the final, where I was to race against someone in a more able category. Sadly I lost that race, but I was close, which was very pleasing.

All of this is a bit overwhelming I don't quite know how I've arrived here, it seemed to suddenly click into place, and it's kind of surreal, especially if something comes true that I'm waiting to hear from the official selector about, but fingers crossed. Will update about that if it happens.

As I said I can't really believe that I've got here, however, I was watching some videos supposedly of adaptive rowing, but there wasn't much rowing, I did, however, find some inspirational quotes, my favourite being "When they tell you what you want to do is impossible, they don't know you." I think this is very true for my situation and many others. Other people don't know what you're capable and therefore shouldn't write you off. Another I quite liked was "Anyone can give up, it's the easiest thing in the world to do, but to hold it together when everyone else would understand if you fell apart that's strength."

I know many people aren't able to be in this position, but I think most of us can somehow break down the barriers and assumptions people have about us.

Inspiration or Perspiration?

Lovely imagery from the title I know, but I know it's something a few of my friends have come across as well.

I'm not being ungrateful, but I just don't get it. People tell me I'm inspiring, brave, wonderful etc... which is lovely to hear, but I don't think I do anything to justify these words. I'm just living my life to the best of my ability. Isn't that what most of us are trying to do, or are meant to do?

I do work hard to have the life I do, hence the notion of perspiration!! Those mornings when I'm dragging myself out of bed, at 6.30 AM to do my medication before my carer comes, to not go back to bed after she's been, but to get out and do things, does take a lot of effort, when you're exhausted, in pain, and know that the hospital appointments you've got that week will be soul destroying and frustrating, but still I get up and get on with the rest of life.  This to me isn't inspiring, just the tale of my wonky body. Thousands of people out there are doing similar things. Can we all be inspiring? As a friend of mine said, what exactly are we inspiring people to do? Are they just using the word, but with no real implications to their life? If so, are we really inspiring?

It seems to me, that so many people have the notion that a person in a wheelchair should be horribly depressed, and just sit around doing something. Now I know of people like that, but it had never occurred to me, until I was in this situation, that the majority of people had this image of a disabled person.  It's not in my constitution to be like that.  I'm fortunate in that my get up and go didn't get up and go without me, but still I don't believe in that striving to be the best I can be should receive words such as inspiring.

Although, I probably am hypocritical, but If I tell someone I think they're inspiring, it's not because of what they're doing despite their illness, it's that I'm impressed with what they're doing full stop.  I think it's hard to think of yourself as inspiring though, especially if you're British as it's not the done thing is it!?

Thinking rationally I can see that I have a bit of a story, to have travelled through my journey and still be smiling, if it was someone else's journey, with the same hopes and dreams at the end of it all, would impress me, but to live in it and be on that journey, I don't think anything of it, just that it's my life and I want to make the most of it.

Is it normal?

Whilst I've been in hospital I've seen quite a lot of TV, and some of it has made me think a lot about normality, and my life

I was watching House, and Cameron said "It's normal to want to be normal", which House disagreed with, I can't remember what he said exactly, because my mind had wandered off, thinking of what this meant to me.

On the occasional day when I'm in a lot of pain, sleep deprived, throwing up non stop etc... I wonder what it would be like to not have these things happening, but that's only very occasionally.  In all honesty, I don't want to be normal, I don't think I've ever been normal, and this usually surprises most people, I'm happier like this than I was before. I have friends who accept me for who I am and love me.  I just have to look around my room, where my locker is covered with cards from friends and all the messages they send.  I never had this as a child, I didn't have friends until I went to uni, which was full of weirdos, so I fitted in just fine, but it really wasn't until my health deteriorated and I had to look on-line to maintain friendships, that I made my breakthrough. Here I found people who were happy to welcome me in to their lives, and even though some of them I've never met, we know each other very well.  I don't think I would have found this level of friendship had my health not become a bit wonky.

I'm also happy, something I definitely wasn't as a child. I never fitted in at school, I was bullied daily, I was miserable, I didn't want to face the prospect of a whole life like that. A life like that for me, is a much scarier prospect than the life I have now.

I also know what I want to do with my life, something I certainly didn't know when I was much younger.

Consequently and I think this is why I can't be angry about my situation, my life on so many levels is better now.

There was another phrase that grabbed me, which is part of a theme tune "I don't wanna be anything other than me." This I whole heartedly agree with. Even as a child, although I may not have realised it, I never changed to fit in with my peers.  I guess though for me, I didn't like many of my peers, and so I didn't want to be involved with them anyway.

I'm proud to be me, I stand up for myself (not literally!!), and I refuse to conform to what society thinks I should be like.

Finally whilst watching Great Ormond Street Hospital last night, one of the parents said that "we all want our children to be perfect.... we just have to redefine what perfect is."

This intrigued me.  I can kind of understand what he was trying to say, and I guess it is part of unconditional love and wanting the best for your own child. I can't imagine how hard it is to watch on as your child (whatever their age), spends months in hospital, has operations, etc... In many ways I think it's probably easier to be the one living it.  I know my parents are much more stressed about my health than I am. I just put my head down and get on with living it to the best of my ability.  Making the best of the windows of health, not worrying about when it might get taken away from me again.

Back to the quote, however, I don't quite understand how you redefine perfect, I guess they were in the early stages of leading a different life, it doesn't mean that the new life, is any worse than the one they had planned in their head for their child, just a different one, that may bring in some amazing experiences that they wouldn't have had otherwise.

I don't think given another opportunity I would have lived my life differently. I'm happy, loved, and enjoy my life, which is more than many "normal" people can say, so you can go and shove your normal, I don't want to be it. I want to be and will continue to be ME!!

When your normal changes

Apologies for the absence, this post follows on from "Here we go again".  The PEJ was no better than the surgical jejunostomy, but the consultant on the ward wasn't particularly helpful and discharged me on the Friday, I saw my own consultant on Tuesday and he decided I needed admitting to get this sorted.


I finally got a bed on Wednesday night, and have started TPN. TPN is Total Parenteral Nutrition, which basically means that I am fed directly into the vein, avoiding my digestive tract completely.  This is a big step as it comes with many complications such as line infections, liver failure, blood clots. About Parenteral Nutrition.


I start my training on how to administer my treatment myself on Monday. As I had trouble with infections around my jejunostomy, I'm very conscious about the greater risk of infections with a central line, so I want to be administering it myself as soon as possible. The less people that touch the line, the less chance of infection. I've been told it's best to do it myself as the skin flora is common to you already so it reduces chance of infection.  I met up with some people from PINNT yesterday, which was fantastic timing so I could discuss with them the pros and cons of a Port v a Hickman line. The main appeal of a Port to me is that I can go swimming, which would be fantastic as I miss swimming greatly and it would be great for cardio training- you may gather that I have a one track mind, most things revolve around my ability to row and train!! I know some people swim with a Hickman, but again given the problems I have with my Jejunostomy and infections I think it would be riskier to have a Hickman.  It's also not going to get in the way when I'm doing exercise etc.. I know some people who manage it with their Hickmans, but I'm going to give a Port a go as I think it'll suit my slightly bizarre lifestyle better!!


I'm hoping to get my Port fitted on Tuesday. We have a fantastic unit here, the Vascular Access Unit, which primarily puts in various lines for all sorts of medical conditions. The sooner I get my Port the sooner I can get home :)  I've set a deadline of the end of the month as I have to go away the first weekend of June.  I've already been told that I'm mad going away so soon after getting out of hospital with a new way of life, although in many ways it's very similar.


My main concern is how I'm going to get my medication as pretty much everything goes through my tube, so my team need to do some thinking about how they're going to get around that.  Although I'm looking at the benefits. I was on jejunal feeds for 24 hours a day, and will be halving that, which would be nice.


So, my normal has changed again, which is kind of what's normal for me. 

Reality versus Perception

This post is part of Blogging Against Disablism Day 2012.


I want to talk about perception versus reality.  I, and those who are close to me, have a completely different perception of my life, than those I meet in the street, or those that meet me in hospital.


Medically, I'm not exactly in prime condition; I'm artificially fed, wheelchair bound, have a heck of a drug regime and a list of medical conditions that makes most flinch.  That's what the medics see, and the people who only briefly come into my life, but it's just one part of my life, a small price I pay for generally a wonderful life.


Now I think I'm fantastically lucky, away from hospital and all the medical appointments, I think I live a rather fulfilling life.  I'm a student, I've been doing a Masters degree, since 2008 (unfortunately not finished due to several extensions thanks to my health, but it WILL get finished), I'm a volunteer doing a variety of different placements- many in the health care setting, to help with future plans, and I'm also a rower.  I want to take this as far as I can.  It's going to be a challenge, but I'm up for it.  I'm at the gym 3/4 times a week doing Pilates, Yoga, weights and cardio to become the athlete I dream of being.  The first artificially fed Paralympian perhaps; I did Google it and I couldn't see anything about former Paralympians and artificial feeding, but I may be wrong.


I was asked by a Registrar today if he could bring in some medical students to do abdominal exams on me, and as I was chatting to him, he was quite surprised to find out about the person behind the body lying in the bed (unfortunately, I'm in hospital at the moment).  It's rare that a doctor, unless they are in your life regularly, gets to learn about your hopes, dreams and aspirations, and that's only if you're willing to raise them and see what can be done to make them happen, because let's face it, often health is the thing that makes many of them difficult to achieve.


Perception is very objective though. I was at an outpatient appointment carrying my gutter frame after yet another failed attempt to get me safely standing, I was queueing to get my parking refunded, oh, I also drive a "VW Caddy, I-can, Drive from" which is adapted with Paravan Space Drive hand controls, anyway back to the point of this.  Two volunteers approached me and as I was chatting to them, I mentioned how lucky I am with all the things I can do, and they told me they didn't think I was lucky.  I was actually quite offended by this.  Surely whether one is lucky or not is in the mind of the beholder, and not something someone else can judge.  Just because I don't fill their perception of "normal", therefore I can't be "lucky" is sadly a reflection of the wider society.  This attitude is just one that needs to be challenged.  It is something I come across regularly, and it just seems to widen the gulf between those with significant health impairments and those without (or whatever terms you choose to insert there, but you get the idea).  All I can hope is that those who come in to contact with me, go away and challenge their own thoughts about these things.  Now I know that won't happen in most cases, and in reality may never happen, but I can live in hope (or is it delusion?!)


Being disabled, although I am reluctant to use that word, as it's not something I readily ascribe to, it's somewhere at the bottom of the list of things I would describe myself as, isn't all there is to me.  It's just one part of me, that most people can't look beyond.  My response to the attitude is that if they can't see me for the hyper active, slightly eccentric, up for a challenge, weirdo that I am, then I don't want them in my life, it's as simple as that.


Philosophically, I view my wheels etc... as a filter for finding new relationships, not just of the sexual nature, but for friendships as well.  If someone can't handle that part of my life, how will they ever manage to deal with the rest of me, which is much harder work to keep up with?!


Life is a challenge for us all, disabled or not, it's just that people can see the challenges they assume (incorrectly, of course), are the biggest ones for me.

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.