31st January

Today last year I got my official bendy diagnosis.

It was awful.

Not the diagnosis part. Finally having a name to put to the symptoms, being able to make some sense of them, that part was incredible - but that part had happened 8 months before thanks to a chance comment by a friend about her sister.

This time last year my suspicions were confirmed by a rather unpleasant rheumatologist who abandoned me into a new life with no information or follow-up.

Luckily the wonderful folk at the HMSA forum were there to answer all my questions and help me pick up the pieces.

Today we have thoroughly reclaimed the date 31st January in our household. It shall henceforth be remembered as the day Beanie's wedding dress arrived, and (this just in folks) the day I passed my driving theory test.

Hooray!

Breakthrough

Again, catharsis and too-early morning ramblings. Feel free to skip.

Dear GP,

It's 5.25 am. I got up to take painkillers at 5. Pain woke me up at 3.30. I'd been counting down the minutes to my last dose at midnight so I wasn't expecting to get much sleep. I held off taking the dose this morning until I had to, because a dose this early means I have to skip one of my normal daily doses and I have my theory test later on.

This is what I mean when I say my pain meds aren't adequate. I'm not looking for all of my pain to go away and I know I need to find balance between pain management and being able to function in a non-zombie fashion. I resent it when you tell me to try non-pharmacological options because that silences and devalues all of the work I have done over the years to manage my own pain non-pharmacologically. All of the work I continue to put in.

Most of the time I don't know what's breakthrough pain and what's just unmanaged chronic pain. The tramadol/paracetamol/amitriptyline keep it manageable on the good days. Most days it doesn't touch it. In your opiates are sedating 'splaining you forget just how bloody distracting and soul sucking pain is. I know you find it hard to believe because the one time you took a 30/500 cocodamol you got really drowsy, but there it is. I can't concentrate when every joint in my body is screaming.

It's 5.30 am. The left side of my body is in spasm from the sacroiliac down. I have nothing to ease the spasm, despite asking, nothing to add in to my normal meds to ease the pain of four major joints all forced into partial dislocation by angry, knotty muscles.

When you don't treat my pain, you make me feel like a liar, you make me feel like you don't care, you make me feel like someone who isn't worth taking the time to treat and then by extension you make me feel like someone who deserves to be in pain.

I don't know how I let you inside my head enough that you are able to make me feel like I'm someone who deserves to be in pain that doesn't really exist. You make me doubt my own senses.

Do you know how many times after our appointments I've had to stop taking all my medications, to get the full burning picture of pain back just to prove to myself that I wasn't making it up?

The thing that scares and confuses me most is that if you were sitting here in front of me I wouldn't be able to tell you this. I would ask for something for the breakthrough pain, you would refuse (I'm on plenty of opiates for someone of 24 you would say, you don't want me to be really sleepy and zombied tomorrow, I need to learn to cope with pain and not be reliant on painkillers, I'm lucky really because I don't have rhumatoid arthritis and have I given any more thought to taking that herbal remedy that's an unproven treatment for a disease I don't have?) and I would cry. I would beg. You would tell me that I really should stop taking the tramadol regularly, because you're obviously building up tolerance so of course it won't help.

Beanie would try to fight my corner for me, but because she's a medical student, she's obviously doing it to be a know-it-all, not because she's the one who holds me and strokes my hair, sings to me, distracts me, loves me when the pain is unbearable.

And anyway, because this is the truly relevant question, how's my mood? I say that it's fine, that I'm not in pain because of depression, that I was very depressed for a very long time but I'm not anymore. You will tell me, with no apparent understanding of the irony, that chronic pain can cause depression, y'know. I will not shout you're telling me my pain is all in my head but that the pain is causing the pain to all be in my head, while refusing to treat the pain or the serious psychological pathology that you are claiming is the thing causing my life to fall apart?

Nor will I shout when I *was* depressed you treated me like I was making it up, like I wasn't worth wasting time on and therefore like I deserved to be depressed. Sound familiar?

Nope. Once again I would just get the message that I am a liar who deserves to be in pain.

That is too messed up. What's the point of practising assertiveness when that's not even the problem? When it's just that I'm dealing with "health" professionals who make me feel like I'm not worth self-advocating for? How did this situation end up in such an awful mess?

I'm so scared that this experience is going to poison every GP relationship I ever have. Logically I know that there are good doctors out there. I know some of them. But pretty much every doctor-patient relationship I've had has been so screwed up that I can't trust that it will ever be better. I'm so worried that the new GP will see my old notes, with lacklustre descriptions of a young woman with a mental health history, chronic fatigue and chronic pain, and just draw the same conclusions as you have obviously drawn about me.

You know what I should say? I am worth fighting for. I will not let you devalue my experiences and my work in caring for my own body. I will not let you devalue the experiences and caring work of Beanie and other family and friends. I will not let you make me doubt myself or my body anymore.


Flo

In which I terrify a (relatively) junior doctor

Where was I? Oh yes, that's right, GP appointment on Friday.

I know that you all find the ins and outs of my healthcare endlessly fascinating - this is mainly for catharsis and memory prompting, so feel free to skip it.

Twas a doctor I'd not met before - either a locum or a trainee, who seemed very young. I would place her at GPST1 (3rd year out of med school), although I wouldn't have been surprised if she was even an FY2. Anyway, she was young.

My two aims for the appointment were to :
- give some excerpts from my DLA form (walking, falling, cooking, washing and 'day in the life') and ask someone to write a report to submit as evidence
- get my meds put on repeat (besides my inhalers, thyroxine is all that's on my repeats list and I haven't taken that in 5 years or so)*

Neither of these is something I would have chosen to take to a GP I've never met before, but the way that the surgery is set up now it's almost impossible to get an appoitnment, let alone an appointment with someone you've met before. Not that I really want to see the regular one anyway. Yes this is one of the ever increasing list of reasons that I am on the market for a new GP.

So, I told her that I was applying for DLA and that I'd brought some information about my day-to-day for whoever would fill in the form to use alongside my notes. She said she would give it to the doctor I normally see, I said that that seemed sensible and went to move on to point number 2.

She then said "so why are you applying for DLA?". I was a bit confused, so kind of stuttered "err...mobility, care...err" *gestures to the wheelchair*. Then said that I have HMS, caused by EDS - not a flicker of recognition. Great.

And no go on the repeats. They don't want to put tramadol on repeat because they like to keep an eye on folk on strong painkillers. I said this would be fine if anyone had ever 'kept an eye' on me, and if every doctor I had seen over the last year hadn't tried to stop it. Which is what happens when you have pain meds on acute prescriptions.

Then I said that I'm leaving anyway, because I'm sick of being treated like crap, not having my pain managed and seeing a different doctor every time I go.

For some reason she took this as a prompt to try and be the one to 'keep an eye' on my pain management. This involved at various points :

- "have you considered homeopathy?" (Want to guess what Beanie's response was?)
- "I don't think a pain management referral would help because they'll only be able to try stronger painkillers - tramadol's related to morphine you know"
- "we need to keep an eye on it because opiates are addictive"

Interspersed with me saying "there's no point anyway, I'm registering with a new GP when I have the report to go in with my DLA form" and her ignoring that and continuing to say things that showed her faiure to grasp :

1) basic principles of pain management and pharmacology
2) that someone who is only 24 / has a condition she'd never heard of could be in enough pain that the idea of 'something stronger than tramadol' wasn't completely ludicrous
3) that given the choice between being prescribed tramadol and not having the pain to start with, my decision would be fairly obvious
4) that I am a medical student (and therefore hadn't even glanced at my notes - it's clearly marked on there after I got frustrated with the last person to talk to me like I knew nothing about anything**)

And then just tucked in there at the very end as an afterthought :
- "What is it that hurts?"

*sigh*

I really want access to teach some of this stuff to medical students. Y'know - basic pain management, expert patients, chronic disease managment (not just acute management of patient's with chronic diseases, or tick box exercises that monitor only common things - depression / diabetes / hypertension etc). That added to my dream curriculum of disability awareness and how the social model of disability, medical model and biopsychosocial framework all have a place in healthcare. Not to mention some proper diversity and equality training - covering relationships with colleagues (the whole team - cleaners, managers, nurses, everyone) as well as patients. Oh, and some idea of how to navigate the healthcare system as a medic-patient. Especially parts of the system that remain clothed in a stigma that medical schools are making no real effort to disperse. Telling medical students who have mental health problems that they shouldn't feel ashamed is not a solution. Removing the institutional prejudice against them is.

Well. It was nice to get that off my head. (For the life of me I can't work out what's wrong with that last sentence... oh well)


* It gets irritating to order the 18 pills I take a day, plus liquid medicine and cream, every month especially because they always manage to forget to prescribe a least one thing. Not to mention the 3 meds I continue to buy OTC because they refuse to prescribe them (have discussed all with pharmacist who has said they're alright to use as I am).

** Admittedly taking the 'I'm a medical student' shortcut is taking a privileged wiggle out of doing some expert patient / patients have a right to make informed decisions about their own health - so you should make sure they actually understand rather than fobbing them/us off with lacklustre 'jargon free' nonsense non-explanations like 'young women your age do faint a lot' - based advocacy. I wish I always had those spoons.

GP saga, installment the 5001st

Things seem a little less bleak. The to-do list remains long and complicated, but it doesn't feel impossible. So, 3 weeks of respite before the despair hits again.
I've made tremendous progress on the new GP front. Almost as much progress as I can have made without actually having a new GP.

My friend who lives near me and has the same condition likes her GP. I am in catchment for that GP and it was on my shortlist of GPs because 1) they have a website 2) you can order repeat scripts online 3) their 'about us' section is very cute, and they say lovely things about being a training practice and having med students 4) their website has access information for the practice, which most don't 5) it's one of the closest to where I live 6) there's ok parking

Unfortunately there's a but.

I phoned the surgery today to confirm what it says on the website, which is that if you're already registered with another GP in the local area, you have to meet with one of the partners to explain why you want to move, and they decide whether or not to take you on.

I'm hoping that explaining that being a patient with a chronic health condition who is essentially registered with a drop-in clinic which can't offer any continuity of care will be enough to convince them. The fact that even when I'm able to drive I won't be able to access that surgery independently (it's at the top of a pedestrianised hill) would be another good reason.

I don't want to push the fact that my quality of care has been so poor, because I know that it sometimes causes GPs to 'close ranks' a bit. If I have to I will though.

I suppose I also have the fact that I can't register at the very closest GP to my house because both the partners there once shouted at me in front of a waiting room for of people for poitely insisting that they refer a friend in crisis to the appropriate mental health services. The fact that said friend was soon after admitted for several weeks maybe proves that I wasn't being quite as unreasonable in my request as they made out.

Basically, I very much hope that this is good news. Fingers crossed =]

Meandering life rant

I don't really have anything to add to my previous post. There are still some things that are good and lovely, and some things that are bad and scary. Having said that, this post has somehow got very long.

I am feeling very overwhelmed.

I currently have no specific support*. Essentially no GP (still registered, but guy I used to see - who made me feel rubbish anyway - doesn't seem to work there anymore, and the whole practice is almost entirely run via drop-in clinic now - no kind of continuity), no physio/hydrotherapy/OT/orthotics, no input from social work, no input from the med school or uni disability services, no DLA, no consultants.

There are steps I can and will and have taken to get this support put in place, but I am finding it *very* spoon draining. Especially because everything requires a huge fight, and noone useful (read GP and physio) particularly believes that there's anything wrong with me. It means that every time I start making moves towards something I get more and more hurt and anxious about trying anymore. And I'm panicked about not getting this bloody DLA sorted out now before the government cocks the whole system up more.

It's complicated by the fact that Beanie has no support as my carer, and is up to her eyeballs in finals stuff, so doesn't have time to do everything. When washing-up time clashes with shower time and showering hurts and makes me feel like death, I'd rather she did the washing-up. Except that going 10 days without a shower makes me feel even less like leaving the house than the horrible pain that getting down the stairs causes. And then I don't see anyone for days. And then I feel isolated. And overwhelmed.

And instead of picking up the phone and calling round practice managers to ask if one of the GPs would phone me so that I can get an idea of whether they're yet another useless, patronising, dangerous ****, I do one of the other 900 things that there are to do when you're planning a wedding and campaigning and learning to drive and organising an event and trying to stop the flat falling apart while the mrs has her finals.

And then someone tells me that I should 'just sort my DLA out' or 'just get a new GP', and I try and put into words what it feels like when life sorta falls apart around your ears for at least the third time when you're only 24 and yet again noone who could actually help believes there's anything wrong - and, in fact, the more you try and persuade them there is, the less they believe you - and I just can't find the words.

My grand plan, for those who will insist on wanting to know that I am 'just' going to do 'something' anyway, is that I have an appointment next Friday with a GP I have never met before who I guess is locum-ing at the practice. It was the only appointment that I've been able to get, having been trying since Christmas. I will take her the main bits of my DLA form - walking, cooking, falls, washing bla bla - and ask her to write me a report using my records. Contrary to what the Mail believes, I can't submit a form without evidence.

Then I will find a new GP. And lucky them.

"Hi, I am essentially housebound and until I get some support I can't get back to uni/work. I am entirely dependent on my partner to wash / eat / get out of bed / leave the house and for my saftey around the flat and overnight. From next year she will start work as a junior doctor, so will be made of nothing but free time to help me. I have chronic, worsening, unmanaged pain. I have uninvestigated, undiagnosed and unmanaged neuro and gastro problems."

People tell me that actually, a good GP will take that all in stride and have compassion left over to extend to asking how Beanie's getting on.

And I've got something to add, after all the years of being told that I'm lazy, that I'm looking for easy answers / fixes and that I can't come crying to the doctor for every little thing. I'm sick of doctors who tell me that I'm letting this condition take over my life when that is exactly what I am trying not to let happen.

Maybe I should tell the new GP this :

I have done a lot of research about my condition, and I do what I can to manage my own symptoms. I eat 10-20g of salt a day and drink 3-4 litres of water. I wear a heart rate monitor and use that to help to gauge when I need to rest so I don't collapse. I'm currently on a dairy free, gluten free diet. I do my physio exercises (adapted so that they aren't as damaging as the actual exercises I was told to do) and I am gradually trying to build up my capacity for aerobic exercise. I take my medication every day, and have learned to manage the side effects. I use drug-free pain management techniques - wheat bags, relaxation, massage and good old fashioned teeth-gritting. When I come to you for help it is because a symptom has got to the point that I cannot manage it on my own anymore, so I need a new med or referral.

Feel like I should put out an advert : Patient with interesting body seeks curious doctor. Can provide own stethoscope. Those who don't believe in opiates for 20 somethings need not apply. Also hold the application if you've ever used the phrase "but your body *can't* be doing that". Please submit 500 words on the nature of the doctor-medicpatient relationship, with a focus on the role of the expert patient and equal access to information in an internet age.

If you've made it this far, you're either concerned or bored. I doubt this epic has satisfied either condition. Sorry 'bout that.

*as a pose to support from lovely mrs, friends etc

Keeping my head above the water

My blog's been rather busy with welfare reform stuff recently, as has a lot of my life.

I am simultaneously doing not very well and alright. It's always the way isn't it - the balance just shifts around between one and the other.

The good :
- Wonderful family, friendships and crip solidarity
- Wedding is coming up rather soon now, and there are lots of lovely things to do like buying a pretty dress and sampling cake
- New wheelchair very much more awesome than old wheeelchair
- Just potentially been offered a powerchair if I can find somewhere to store it
- Am already starting to feel my fatigue lifting a bit as the days get longer
- Feel like I've got my Dad back - spent a lot of time with him over Christmas and things are so much better than they have been for ages
- Got lots of new socks for Christmas so my feet are super happy
- Have gone gluten free and my tummy is now super happy
- Got a beautiful sewing machine and learning how to use it
- Dysautonomic (fainty) symptoms better in cold weather
- Driving still going surprisingly well (theory test soon, eek!)

The bad :
- Really needing to change GP still, but worrying that I'll never find a decent one
- As a consequence DLA form still not submitted, putting up with some horrible symptoms and feeling altogether like there is noone managing my care
- Not able to keep up with hydrotherapy exercises because of access problems to council pools so losing function again
- Sometimes feel quite isolated partly because there are only a couple of days in a week when I see someone who isn't Beanie, partly because I've been helping with a pretty intense campaign, but all online - this is why face-to-face crip solidarity is so improtant to me at the moment
- My joints bloody hate the cold, and I've just gone into my extra bendy fortnight

The anxiety provoking :
- Still no real word from the medical school
- As a consequence not really having any clue about how next year will work - or indeed if it will work

There is a lot going on. Will try and post on topic soon.

Pester a Peer 2012

The letter is below. Feel free to use it as is, or to personalise it (for example switching 'we' to 'I' if that's more your style, or adding your own experiences). Please comment below and tell me how many peers you would be up for emailling (even one is one closer to all of them) - I can then suggest some to you and try and keep track to make sure that we cover everyone. Or, pick a random letter of the alphabet here and work through it. You can find out how people voted here.

Thanks,
Flo =]


Dear x,

We were delighted with the outcome of the ESA votes (If the peer in question voted our way on ESA, you could add a thank-you here) - finally some hope that we are being heard. It was, therefore, with great concern that we heard that one of these amendments may have essentially been overturned - especially because of the circumstances surrounding the vote which to an outside observer seemed somewhat underhand.

I'm sure that by now you will have seen a copy of Reponsible Reform the 'Spartacus Report' (linked here) and we would ask you to read it if you haven't already. It outlines a number of concerns surrounding proposed reform to DLA. While we are not opposed to reform of DLA in its own right, we are concerned that the motivation behind these particular reforms are primarily financial. Whilst we understand efforts to eliminate fraudulent claimants, we are worried that the negative effects of these reforms on genuine claimants will significantly outweigh any benefit to the economy. Removal of support for disabled people and carers is also often a false economy, because the costs get shunted to another part of the system (for example to the NHS if reduced support causes health crises).

You might want to include your own story of how DLA reform will affect you here.

Please remember sick and disabled people and carers in the continuing debates and votes - you have our future wellbeing in your hands.

Thank-you, etc

Emailling peers

We can crowd source a bit of a plan in the comments =]

I'm thinking an email needs to include :

- thank-you to those who voted with Patel yesterday

- expression of concern over Freud's funny business last night

- a mention of the Spartacus Report and encouragement to those who haven't to properly read it before DLA/PIP votes (we will include a link to the report which is here even thought they should all have a copy)

- why DLA reform is bad, the basics (we could use this letter as inspiration)

- any personal stories / messages folk want to add

On this link there is a list of peers which links to an info page which has their email address on it if they have one. We could split them alphabetically, by party etc so that people don't have too many to email each?

Guardian Society Live Blog

Go here to see the Guardian Society Live Blog of happenings with the Welfare Reform Bill.

They are asking for our input - tell them what you think they should be covering, and why.

This is another important chance for us to shape the story. The comments thread already has comments supporting welfare reform - let's (politely) tell them why it can't happen, at least not in the way that is being proposed by this bill.

You can get in touch with them through the hashtag #wrbliveblog or by tweeting @patrickjbutler or @lauraoliver - or get commenting on the blog itself.

--

I would also really like to get an idea of who has emailled MPs/peers over the last few days and about what - if we coordinate, we can cover ground more efficiently

#Spartacusreport or 'Responsible Reform'

Below is a link to the press release announcing the release of 'Responsible Reform', a report on proposed reform to Disability Living Allowance (DLA) written, researched and funded by disabled people, care-givers and allies. This is incredibly important. Please read the press release, and consider sharing the report on your social networks or emailling it to your MP. Consider getting in touch with the BBC or other major news providers and asking them to report the story (easily done via twitter @BBCnews @channel4news etc).

Thank-you.

The link to the press release is here

An article in the guardian outlining the issues can be found here

The full report can be found here


Please add your voice to the many and varied folk showing their support (we have been trending on twitter almost solidly since 10am!) - celebrities, politicians, charities and most importantly disabled people and carers, those who will be hardest hit by the government cuts.

"Alone we whisper, together we shout"