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