Thursday, 27 August 2015

The Sick Role

I know I've rather slowed down with the writing. I always have plenty to say but sometimes I need to keep things to myself a bit. However I do realise that not writing means that you guys miss out on all my wonderfully happy stories! So I thought I would top you up with the joys of my life and all the little challenges it brings. Today I'm merely ranting out loud but I promise to post a more personal blog soon....

I've been thinking a lot lately about other peoples perception of what my life entails. Obviously not those who actually take the time to find out, those who send me messages because they've not heard from me in a guys are fine! No, I'm talking about those who choose to judge from a thousand paces purely on the fact that you have put a little make-up on!

Just want to get this out there... YOU GUYS SUCK! Big time!

What is it with this obsession that sick people must be:

a) miserable   (sick people obviously NEVER smile)
b) pale   (anything warmer than casper the ghost and your obviously fit and healthy)
c) unable to walk (omg...your not chained to the house?)
d) Totally useless (what, you can still do that...really?)

Just a few of my personal favourites but you get the idea. Well, maybe when you have flu, you behave like that for a couple of weeks. Take a day or so off work and hide under the duvet and it works for you, right? Yeah...

Now relate that to my life...

a) Do I want to spend the rest of my LIFE being miserable?
b) Do I want everyone I meet to tell me I look like Morticia Adams?
c) Do I want to live my life, or rot my brain on day time TV?
d) Everyone needs a purpose!

I don't want to spend my life hiding away in a duvet fort, looking like shit, crying all day feeling sorry for myself because I'm so useless. Maybe you like to do that when your sick for a day or two but if that was forever...would that still be your strategy?

Of course not!

So why judge me negatively for trying to do as much as I'm able, smile as much as I can and try even though I might fail. It's my choice to fight back, whether you like it or not. Simply because I choose not to let it beat me does not mean that I am well. I merely choose not to share my pain with people who will never's too short!

Saturday, 21 February 2015



Fuming doesn't even come close to how I feel right now. Life has been SO hard lately and getting all this down on "paper" in a coherent way might be a bit of a challenge but here goes!

Rewind back to November (2014) my jej tube started to misbehave. It started with a niggle and what we thought was granulation tissue around the stoma. So I told my GI and went to the gp for some silver nitrate to burn off any troublesome tissue (nice huh). The granulation disappeared but the pain was getting worse and now it was weeping all the time too (infection was ruled out straight away).

So, step two was to ring my team and get someone with experience to look at the tube and find out what was going on. December, I get an "urgent" appointment to see the surgeon who initially placed the tube for me, by which time I was having to take the dreaded oramorph to be able to get to the appointments!

My mum and I attended the appointment together like we always do to make sure everything is covered. We arrived at the clinic to be greeted by a registrar instead. No problem, he's a surgeon too right? NO…. just NO! He was about as much use as a chocolate tea pot and really didn't know what to do other than order and ultrasound to check for fluid collections. Fair enough, that's fine, just do it quickly PLEASE!

It's nearly christmas.

A week goes by and I'm getting worse not better. no sign of a scan and the response from the tube nurse is, "it's christmas, there's nothing available." So she arranged for me to go and see the surgeon (who we should have seen in the first place) the next day.

As usual, my mum got the job of taxi service! We arrived a little early but when we got there it appeared that he hadn't been informed of our appointment because he hadn't checked his email. Great start!

When he did finally arrive and check things out he decided it had to come out. The tube is eroding on the inside and the skin is mottling around the site. It feels like someone is pulling it from the inside, causing my abdominal muscles to spasm right down to my pelvis. It REALLY needs to come out!

I go home knowing that I would have to wait until after christmas, which was obviously not what I wanted to hear but I get it, winter is a strain blah blah blah.

Well, on xmas eve, life decided I really didn't have enough to deal with so it handed me a whopping dose of the flu…..yeah…..thanks! So I spend xmas day wrapped in an electric blanket in the corner with Freddie krugger having a pop every time I needed to cough, move or shiver. The oramorph had completely knackered the rest of my gut so I had to stop taking that as well. (MERRY CHRISTMAS!)

Fast forward to today (feb 21st) What's been done?

Erm, well?

I was ringing the tube nurse every fortnight until last week to find out if they had a date. Not unreasonable, not pushy I just need to know when because Im really not coping with this.
In our last conversation (after the usual flannel… bed shortages blah blah fucking blahhhhhh) she told me that she couldn't tell me when it will be, neither could anyone else and she didn't want to be piggy in the middle anymore and that I should try and find out myself through the secretaries!

Oh my, I really can't take much more of this telephone ping pong!

I rang the secretary straight away and explained what had been going on. Horrified by the situation she went off to find out what was happening. GREAT finally! She rang back the following day to say that she still couldn't tell me when it would be but I had an outpatient appointment coming up (today) and I should raise all my concerns when I see him.

I thought to myself, why do I have an appointment with him again when he has already decided what he needs to do? But in my naivety I thought it was because he wanted to see the stoma again since its been 3 months. Plus, the tube has started leaking so I've been tying a rubber glove over the end of it to stop the (sorry for the graphic explanation) "shit" from leaking all over my clothes!!!

Yeah that was dumb…. dumb dumb dumb!

Today my husband and I went to that appointment. We walked in, sat down and asked… when are you going to sort this out? Erm…. I can't tell you I don't know!

(Is it me?)

Why have we come to this appointment then? Erm… I don't know, someone must have booked it by mistake!

(Really is it me?)

I asked him why he couldn't tell me and he explained that I'm complicated and they want the right people there etc etc blah blah blahhhhhhhhh.

So I politely reminded him that IF I didn't have a problem with local anaesthetics it would be a quick procedure.

He agreed. Yes you could have had it done straight away as a quick in and out if you could have local anaesthetic (they don't work on me).

So that being said, what exactly is the complex part of this?

He said, " I'm not an anaesthetist so I can't tell you. All I know is my part of the job but given your allergies etc this makes the anaesthetic a higher risk."

What fucking allergies? I'm only allergic to cyclizine, nothing else…zippo zip!

We were about to leave when I asked him if he was even going to look at the tube or not. If I hadn't asked he wouldn't have even thought to look.

The only solution he gave was for the leaking, so they replaced my  practical waterproof glove with….gauze?… so it can soak into that, and THEN my clothes! EXCELLENT IDEA…ugh…aaaand the rubber glove is back. I look so good right now!

All in all I've dragged my family to Leeds 3 times now and I'm no further forward than I was when I started!

If you read all that and followed it your better than me ; ) Sorry for ranting but Im so so sick of having to fight for every single thing. It's just wrong and I know it's not just me, it's everyone. Is it so unreasonable to ask your practitioners to keep you comfortable in the absence of a cure????

P.S. Oh and the scan… the urgent one….ordered in december… yeah I had that at the beginning of February!

Saturday, 17 January 2015

Gastroparesis the Truth

What is it really like to live with a  debilitating condition that may never go away?

In the beginning, its all about survival, just trying to get through the endless testing, trying to find the answer to your problems. It is such a difficult time that you barely notice the months slipping by that you will never get back. You spend most of your time trying to find a treatment that will help, looking for that illusive piece of the jigsaw that has been missing your entire life. You don't stop to think, what if? It doesn't even register on the radar…there must be something, someone else might know more, maybe I can work it out myself? 

So you loose yourself in finding the answer, switch off from what's happening and focus on the one shred of hope that you have. All the time, tick tock, tick tock, the months go by.

Finally you find someone who cares, a special dr or nurse who takes the time to listen and it changes everything….for a while. It gives you comfort, new hope, and a place of support and safety. In my case …saving my life. 

You now have tubes, holes, scars and new fears….. you're alive. Alive, but different. Jaded by the trauma of what has by now been several years. Years spent just trying to stay alive, being prodded, poked, cut into, cameras down the throat, up your bum and anywhere else they might wish to look! 

Wearing the battle scars you are now counting the years, the children are growing up but you barely noticed. The pain, the nausea and the side effects of medications take your memories and turn them into fleeting moments with little detail. You realise that their happiest memories will be of things they did with their grandparents, their father, their friends. 

You are alive, and you're grateful but you realise you are just existing. Just trying to get through the next day, the next hour, the next crisis. 

Despite everything that you have been through, you still don't feel better, trapped in a failing body and now a broken mind. There is no cure for gastroparesis, this is what life is now. 

However, people you meet know nothing about your struggle, your friends tell you that you look so much better. Your weight returns and you look just like anyone else with your clothes on. Hiding away the battles you went through. So you start to pretend that everything is ok. Pretend you can cope and say your alright when your not. Bite your lip and smile through the pain and pretend you need the loo when you really need to throw up. You do it to protect those around you. Because they have missed so much of you while you were fighting for life. Missing from every photo, really not there at all.

So you get lost in a hole, pretending to cope when you don't, crying when no-one is looking, not able to explain that although you might look better, you rarely feel it. All the time knowing that this will be what you have to do for the rest of your life. Hide any pain you might feel, laugh when you want to cry and claim to have hope when you no longer do.

Giving hope to others is really the only thing left, the only purpose you have. We all need it…. but we wish we didn't have to. We wish for a cure, a way to get our lives back, for someone to find the answer. It really is all that's left. 

Being alive is not enough, we want to live it, want to be in every photo, bearing a genuine smile, grabbing happiness wherever we can. We all need that, invisible illness is so much more than not being able to see what's wrong. 

Next time someone asks you, "Gastro what?" point them this way, maybe one day we won't have to go through all this and we can get on with living the lives we have had to fight so hard to keep.