Monday, February 27, 2012

"Keep Breathing And Definitely Don't Die!"* #nhs #iamspartacus

Sometimes the words just won't come. How can I say something I don't want to think about,  hear or accept? Something that black characters on a screen translate into a reality I have to face up to.

This isn't a campaigning blog. Sometimes it is used as such, but primarily this is my blog; as it says in the tagline 'life in a broken bureaucracy with a bendy and borked body' And, like all lives, sometimes that means dealing with things we didn't plan for and would prefer not to accept. For five years I have used this space to talk about my life, to share knowledge, to build relationships with other disabled people, to educate and inform, but mostly for me. Originally it was a safe, anonymous place to work through all sorts of issues with just one key theme - life lived with a disability. Over the past couple of years that has changed, it's no longer even pseudonymous, this is the place you'll end up if googling for my real name. It's in the National Archives, a forever record of a first person account of life with Ehlers Danlos Syndrome in the 21st century. In a hundred years or so, this blog along with many others will be studied as historical record, just like we studied the diaries of writers from previous centuries to gain insight into their lives, how they felt and perceived their day to day experiences. The key difference with these new blogs currently being archived is that historical first person accounts of life lived with a disability are incredibly rare due to the system of apartheid which segregated disabled people into institutions and deemed their lives of fundamentally less value than those not yet disabled. My only hope for the future readers of this new breed of disability bloggers is that they see it in exactly the same way as any other diarist - a life lived.

 I wasn't sure, am still not sure what to say. When I started to type, I thought that this would be a love song to the NHS, warts an' all. But it seems that is still a story for another day. For today it is grief, loss, sorrow, sadness and fear working their way from my fingertips onto the screen. My story. As it happens, as it feels lived in the moment, just like all the other windows into individual worlds blogging provides so well.

Finally, last week I saw the respiratory consultant. I was referred to this consultant, Dr Breathe by my rheumatologist before my larynx threw a toddler style tantrum, collapsed and lay on the pavement wailing (silently!) it's not fair back in October last year. So, it came as quite the surprise to Dr Breathe that I couldn't actually speak. Croaking is so last year dahling. As he astutely commented during the appointment, it does not take a genius to hear that there is something profoundly wrong in my trachea.

There's one major indicator that people who've been sick for a while know to look for in their doctors. It's not anything they say, or even do, more a basic rule of being a sickie. If your doctor looks scared, then it's time to be scared. And Dr Breathe, competent, organised and efficient though he was, was also obviously looking worried. Other key signs to look out for should you ever find yourself in this position is the doctor sending the nurse out to book a theatre slot before they've even really taken a full history and when they won't let you delay said theatre slot. You will occasionally find this accompanied by a side order of dark mutterings about why this hasn't been dealt with before by X, Y or Z speciality whilst the poor, scared doctor takes it on board that actually this is a crock of shit they are going to have to take responsibility for because ain't no-one else stepping up to take it from their hands.

Dr Breathe was really quite impressive. He's the kind of doctor who knows what he knows, and crucially knows what he doesn't know. In this case that means really not alot about EDS so far, but give him a bit of time and I'm sure he'll be up to speed. In some ways it doesn't really matter because though neither of us have said it, Dr Breathe and I both know I have tracheobronchomalacia. Ironically, given my history of not being diagnosed with Ehlers Danlos until I was 28, diagnosis is not the key issue here. It's the what on earth do we do about this which is the challenging part. Oh and the not dying bit. That is also key. Quite alot key akshually and given my general ineptitude with keys it's definitely time to up my game.

Although tracehobroncholomalacia is rare, there are a few standard treatments for it. Of course, they are designed for standard people unfortunate enough to collapse their airways, not unstandard bendy people with tissue as fragile as a wet piece of toilet roll. I've had enough orthopaedic surgery to know what happens to my tissue when its stitched or a metal anchor is used. Nothing stays where it's put, supposedly unbreakable bits of metal end up impersonating modern art, sutures don't dissolve, instead hardening into a metal like substance and all that mess creates more mess than there was in the first place. I'm guessing that will remain the case until someone invents a surgical material that is able to support structures whilst being soft and flexible enough to bend in the gazillion possible permutations a bendy body is capable of. Those titanium memory staples tough enough to tow an aeroplane with? Ripped out of the bone and mutilated by a bendy shoulder in a matter of months merrily tearing up tissue as it went.

That means stenting, mesh patches or resection are all filed under 'seriously bad idea'. As those are really the only treatments for this condition that means it all gets filed under 'oh bollocks' which is usually kept in the adjacent file to the empty suggestions box.

What it all means is that I have to put on my big girl pants and face up to all of this. Denial appears to be using extraordinary rendition to make me go and rummage in my knicker drawer for answers whilst Dr Breathe, is I strongly suspect, rummaging around google scholar for his answers. As there kind of aren't really any I'd better find the big girl pants fast and they'd better be pretty. Being bendy has robbed my of the ability to wear attractive bras or pretty high heeled can frankly go fuck itself if it thinks its stealing sexy pants from me!

So, a week today I'm going to have a bronchoscopy so we can see for sure what's happening. It's a flexible scope that goes down your airway, past the larynx, through the trachea and into the bronchi. Dr Breathe assures me that the sedation drugs are good stuff and mean I won't remember a thing, but I have EDS and have heard such assurances before. Quite shortly before there was a burly dentist kneeling on my chest bitching about the lack of general anaesthetic in fact so I am not convinced this will be what I might class as 'good drugs'. But, I'll have my big girl pants so I can tough it out with a possible side order of unpleasant hallucinations.

That's the immediate issue to face. After that will come much harder battles. Do I now have to adjust to a whole new level of disability, what will that mean for my life, will I need more practical support or care, will I even qualify for that kind of social care support whilst cutbacks are occurring everywhere and will I be able to cope emotionally with having to deal with social services? Who knows what the answers are except for the latter which is almost certainly not.

I came home from the hospital on thursday filled with the most overwhelming gratitude for the NHS. Whilst the NHS has it's problems, particularly around chronic conditions, it is not until you are actually the kind of poorly that means you need to use the NHS properly that you are able to see how it does what it does properly. Last week I had a chest x-ray, blood tests, spirometry, consultant time and nurse time. Next week I'll have consultant time, anaesthetist time, a theatre slot, medication and an Intensive Therapy Unit down the corridor should something go wrong and cause me to need it. I'll have any medication I need afterwards, I'll be seen again by Dr Breathe as long as I need it.

The cost of ALL this will be borne by the NHS. I am free to focus on the things I can do to improve my condition and ways to manage my life. I cannot even begin to imagine the terror I would feel if I had to pay for these things in an insurance based system. I started this most recent journey in the NHS funded private sector, who didn't know what to do about it so chose to ignore the problem. Complicated is not financially profitable. It's not great for me either, and it's a bit of a challenge for the NHS, but complicated is where doctors and nurses learn the skills they need to treat routine. I'm incredibly lucky to live in the UK where, despite the sterling efforts of Andrew Lansley to chop it into profitable and 'fuck them' categories, we still have a health care system free at the point of need. I don't need to imagine what it would be like to face having to pay for each element of this kind of care or what decisions I might make to go without care based upon my ability to afford it because I have the NHS. And across the Atlantic I have Rachel, who also has EDS and tracheobronchomalacia. The difference is that despite having good health insurance, being educated and able to navigate the system, Rachel has to worry about paying for every single element of her care.

And, thanks to the NHS I don't. Yet.

* the best advice given to me on this matter!


alhi said...

I have missed the more personal blogs from you although I know the campaign has required your energy and time.

I had a friend who had a bronchoscopy without sedation as they needed to see the way she breathed normally. It wasn't pleasant she said but I don't think it was as bad as she thought. Still, I hope the sedation works.


Ceeej said...

And praise be to the NHS, with all its faults it's still damn good when you get to the sharp end and find the people who you need to see. If only we could strip away the layers of management who have been put in to paper over the real and imaginary cracks or to suit political purpose.

havantaclu said...

Your strength of character and determination will help you to surmount this with the help of the NHS. Another good reason for us to fight against what is being done to it, without public consultation and against pre-election promises, by this despicable coalition government. There are a few straws in the wind which may idicate the FibDems are rethinking, but it's too little, too late, and we know what to do with traitors.

Bendygirl, look after yourself - there is ionly one you and we all thank goodness for your uniqueness!

Love, hugs and peace

Melissa said...

Sending you huge, gentle, Bendy hugs for all your explorations and discoveries next week. Just found out my twins will be checked into Great Ormond Street for 2 weeks' intensive physio to combat THEIR EDS. And I continue to have spinal operations for MINE. Bless the NHS indeed!

Nemonie said...

I commented on your last post about your breathing issues and included a link to an interesting medical solution. I think the same one the Rachel is pursuing actually, that of a tissue engineered trachea. I also have EDS and am just starting to have choking issues. I'm hoping that mine stay pretty mild and that you manage to find a solution.


The Goldfish said...

As Ceej says, Praise be to the NHS.

I don't have anything to add, but that we're thinking of you.

Stitched Together said...

Shit, that really really sucks. I hate that you have something else to deal with. It sounds very unpleasant. I know what you mean about the NHS. Without it, I could well be dead. Without it, I would definitely be a great deal more ill, and probably bankrupt. It isn't perfect, but I can tell you and anyone else who cares to listen it is a LOT better than it was 10 years ago when I first started using it properly. I don't understand why the Government is so adamant that it needed a major overhaul. It really didn't.

Peace Artist Lainey said...

Gentle hugs of unconditional love wrapped in a breeze that doesn't overheat or chill...I agree with what was said above about how it was better until this lot got in and started systematically destroying everything we hold dear when our lives depend on it or for more routine stuff...I'm asking the cosmos to keep you as comfortable as it can through this...hugs xxx

Lisa said...

Good luck with the good drugs. Last time I had tubes shoved down my throat the only thing the drugs sedated was my ability to breathe. I was perfectly awake and perky and can remember everything. Including having to remember to breathe because my body kinda forgot to do it itself.

Anonymous said...

Chin up lass. Be well. My Bear and I are thinking of you.

Dray xx

L00py's Craft Creations said...

Aw hunni! gentle hug hun, as I have just been through the mill over at Manchester about this. Mine is dislocating Vocal chords causing the problem, not quite the same as you, and only one side is currently dislocating, but we have such fragile Cartilage that it does cause problems. The specialist at Manchester has been very good with me, I must admit, though when they turn green when your Trachae is doing things it really shouldnt you do start to worry dont you. Unless I dislocate both they wont do anything, thank goodness, though I do have a note downstairs for the poor ambulance man should it ever happen. BUT, as Manchester is an EDS Centre, I was lucky in that I had an hour with the consultant anesthetist, prior to surgery last June, there is a different Anesthetic, and painkillers, but they wont give them unless you insist on it hun, but they do work, first time ever I have been completely pain free in over 40 yrs, ok it was only for 6 hrs, but it was worth it!
I will be thinking of you and praying for you, and you know what we are here for you, xxx

Anonymous said...

YOu are such an inspirational person - who has given so much to so many people whilst suffering so much yourself. I pray that the NHS's plans will help you and Dr Breathe will sort things.

You and your big girl pants will be OK as you have all of out here holding your hand...

Sounds funny to say that we are holding your hand but - we are! (A lady who passed said this to my Mother when she was going through Breast Cancer 2yrs ago - And she held my mothers hand right thorugh and even though she has passed away and I never met her - I know that when I have needed her Bea has also held my hand when having a GA or some horrible biopsy myself) So please know - We are ALL holding your hand and we love you <3

Hugsssssss x x xx

mrswupple said...

We all owe you such a lot. Your strength and good humour helped us when we needed it. Just think, the broncos copy will be over quickly. With sedation you won't know it's happened. I know things are scary but the fear is always greater than the thing you fear. Sending love and prayers and love of course from the cat.xxxx

Veronica Foale said...

You are absolutely NOT allowed to stop breathing and die. I forbid it, all the way from here.

I had a tube popped down my throat at one stage and despite having the same fears as you, I truly didn't remember a thing, which was nice. Something about amnesia drugs, or whatever.

Stitchinwitch said...

I can only offer my positive thoughts and virtual hugs. The room will be crowded with all of us holding your hand and watching over you :)

misspiggy said...

Am leaking tears of frustration because you've helped me and so many others and it's just not fair. (Helpful, I know.) Thank you for updating us on the situation and look after yourself.

cogidubnus said...

Having recently suffered a (fortunately mild) heart attack and being diagnosed with angina, I'm deeply impressed with all the front line NHS staff I've encountered so far.

Ordinary Girl said...

BG!! Its been so long since I stopped by, but I'm so glad to read one of your more "me" posts. I appreciate the campaigning stuff but I most loved your original blogging, which was all about you! I guess the loss of anonymity makes a huge difference. Sending you love though!
PS. When did you get to be such a celebrity, lol x