Hospital

This is me having a whinge about my day- I'll probably be really ashamed of myself later and take it down.

Today, as you may have gathered from the title of my post, I had a hospital appointment- this isn't anything new, I've posted about IBS and other stomach stuff before.
Normally the hospital is really helpful, they give good advice and they get me patched up and out of there.

I was referred last time because I had some blood tests by my doctor as a result of my whinging that my stomach hurts and I feel sick most of the time. tests done, and they showed my blood amylase levels were high. so I went, had more tests, had an ultrasound and they seemed confident it was all fixable.

I went back today for the results and was just expecting it to be "take these, case closed, go back to your life!"
But no, Today we established that the Amylase is a result of my kidney function being rubbish. So not one for Gastro to fix. They don't know why my stomach hurts, but they seem to think that rather than it being a "stomach" thing it is probably a "Thyroid" thing (I have an underactive thyroid- that was what damaged my digestive system in the first place and has lead to my IBS like symptoms, your Thyroid controls all the reactions in your body, including metabolic rate- Incase you ever wondered why I just fall asleep at like 7:30, I'm not narcoleptic, I'm just exhausted all the time).

So,  In order to pass me off to another department (Endocrinology) As if I was a bag of potatoes or some other object without any feelings they have to rule out ALL possible stomach and gastric complaints. Therefore, next month I will have an operation to take tissue samples from the upper gut and an MRI to check to lumps bumps etc that shouldn't be there.
I will also have to get my adrenal glands checked, because they may not be working anymore.
Brilliant.

And whilst they're sorting themselves out they suggest that I take amitryptoline, which is an antidepressant. Not because I'm depressed (Although, as I get told all the time.. "Many people which chronic illnesses are depressed and struggle to accept their symptoms, this affects their enjoyment of life") but because one of the side effects of it is that you don't register pain in the same way you would do normally- so the idea is that I won't notice that my stomach hurts and I feel like I'm going to hurl 24/7.
It's also a sedative. So I guess if I go for this genius plan I can reduce my bedtime to 6:30?

I give up. Lets give me fucked kidneys something else to process shall we? that'll really help.

Another side effect of these tablets is weight gain. Anyone who has an under active thyroid will tell you that weight gain is truly the bane of their lives.
I would rather feel like shit and be in pain 24/7 than gain any more weight. Part of this is paranoia caused by a lack of objective thinking- whenever I go to the hospital I am weighed (incase I need a procedure requiring anaesthetic) as part of this process they tell you your BMI and which category you fall into. A healthy weight for me is 11.3, Currently I am 10lbs overweight so in line with NHS policy, I have to be told that I am overweight and will die horribly unless I immediately stope eating anything ever again.
I know they have to say it, but it doesn't hurt any less every time.
 My Metabolism is super slow. I really have to work to lose weight, and to keep it off is just a losing battle, because as fast as I'm cutting calories and carbs and trying to eat low fat/low sugar/low fun and exercise until I die of exhaustion, my antibodies are destroying my thyroid more.
It won't matter how hard I work because I can't win.
I'm still trying though! As with arguments even when I know I've lost I feel like I have to have my 10 cents worth.

And I'm tired. not just like, "oh, it's bedtime and I guess I'm sleepy" tired I mean like when you spend a whole day out on your feet walking about, and you get home and sit down for the first time all day and feel like you'll never move off the sofa.
I feel like that when I get out of bed.

Yes, I know I'm whinging, and yes, I know I'm lucky. this isn't life threatening or horrible or obvious to other people. Lots of people are far worse off than I am.
It's just frustrating.

I know that getting a diagnosis takes a long time, because it has to be right. I understand that it's important we explore all the options and find the real cause of symptoms, not just cover them up. I'm grateful that the hospital are thorough.
But to get this far has taken up 6 years of my life.

One thing which would really help speed this process up would be some joined up thinking from the hospital consaultants and my GP- That would be really helpful- Don't tell me to change my diet to eat things I can't ("Have you tried eating tofu?" NO because it inhibits my thyroid tablets! read my medical records dumbass!"Have you tried a paleo diet?" no, because I'd like to leave my house, If I just eat protein my stomach will do disgusting things) Don't neglect to read all the diagnosis history- maybe theres a reason I'm not running marathons  ("You should take more aerobioc exercise, why not try running?" Because I'm exhausted, and I didn't run anywhere yet- read the memo!)

Read the information on whatever you're trying to prescribe me and check that I can:
a) actually take it with all my other tablets
b) that it won't make me sicker/ fatter.
c) Still do all the things I currently do


And, give me some actually useful advice. I appreciate that people are busy. Doctors are busy dealing with people who are sick. So give me something useful I can do and tell me, on a personal level what I can do.
Generic advice isn't useful.
Having no idea about your patient isn't helpful either.

So, it's pretty safe to say I'm in an awful mood today- More of my life being taken up with medical appointments- and I have to go to the doctors later as we need to discuss sedative options for the procedure next month- I suffer from seizures, you have to be 4 years "fit free" to drive. I currently hold a full driving licence. If the hospital fucks this up I'll have a lovely car shaped ornament in my parking space.
Add to that that the consultant didn't read my notes properly and didn't realise that I only have one fully working lung, I bet they call me back to do an ECG and lung capacity test before they can do this. Less haste more speed please!

It's always interesting. I guess because I look "normal" and I lead a perfectly "normal" life and hold down a professional job people never think to actually read my notes. They assume that I will be "normal".
I forget that these aren't things everyone has- I usually end up mentioning them as an after though "By the way, you did know about.." and then we have to go and have a private chat.
Almost every time they're like "And you're registered disabled right?"
Uh, no.
I am not disabled at all. just a bit mashed.