We might die from medication; but we sure killed all the pain.
I fucking hope so
I think this every day. And then I have to remind myself that I dont deserve this pain. No-one deserves pain.
mentally and physically
Love your life MORE than you hate your pain.
Thanks to Chronic Curve for the inspiration for this one… I really needed it.
Me, myself and I
Hello dearest followers that probably won’t read this :)
I haven’t been posting very much recently but I have been online checking up on all of you. I have just found myself slipping back into the realms of depression and I’m not at all comfortable there.
So, things that have happened that are making me lose my grip on happiness and sanity:
* I still haven’t made the decision if I’m going back to university this year. I don’t know whether my mind or body can take it.
* I have become registered disabled by the government.
* I have to have social services round to assess my needs and look at equipment I need.
The above two points may seem like positive points, but I was hoping deep in my heart that this was a temporary sickness. That I would get better.
* I am now under the care of Professor M - an autonomic dysfunction specialist, his gastroenterologist friend, Dr K - the hypermobility specialist, and then another gastroenterologist, a rheumatologist, and a cardiologist. And I’ve been referred to the pain clinic. Fuck me that’s seven doctors, plus my GP. And at the moment still no-one knows what’s wrong.
* the pain is the worst it’s been, it hurts so much on a general every day level, and then BAM! A shooting pain. Agony hits. I want to scream out. My hips and knees can give way (landing me attractively on the floor). I’m pretty sure my body hates me.
* Me and the boyfriend had some arguments over the washing up. I know this isn’t the end of the world, but… I really thought he understood that sometimes I can’t. And that I’d rather use my spoons to make myself a hot meal. We have made up, it was just a tough week.
* I’ve had palpitations EVERY day and I’d like them to, in the nicest way possible, fuck right off. The doctor says theres nothing I or they can do. I’ll just live with them then.
* I am fed up of taking medication. I take between 27 - 32 pills a day. And nothing is getting any better.
* The fainting has started back up. I am no longer allowed out by myself as it is dangerous. I had two ambulances out in one week. The doctors at the hospital didn’t care about the fainting. I hate fainting (as most people do). But it’s been this massive thing in my life and now only one specialist (Professor M) has started to listen properly about them.
* Oh, adding a bit of vanity here, I look six months pregnant.
* and lastly, I am so lonely. It is better now I live nearer my parents, but, I still am plagued by bouts of heartbreaking loneliness. I feel like I’m losing my friends. I have nothing to talk to them about, apart from my health and illness. And whilst they are living their lives they forget about me. And I want them to do their stuff and be happy, but I’d love to see them and talk to them again. It hurts without them.
Most of the people I follow or who follow me, have some form of chronic illness. So, you understand where I’m coming from. But I sometimes get lonely here too.
I just wanted to reach out and let you know what’s happening with me. Talk to me guys?
I love you all, as always. Wishing you infinite happiness and an abundance of spoons. xxxxxxxx
Ranting health / education update.
I had my specialist appointment on tuesday. I had to travel all the way up to London to see him, and he was actually very nice. He laughed like the doctor from the Simpsons. Anyway.. he was very nice. He thinks I have some form of autonomic dysfunction and I have to go for tests. The waiting list for tests is 6 - 8 months. I waited 8 months just to have this initial appointment.
I managed to hold my tears until I got out of the room and then promptly bust out until sobs. I will be having tests sometime between January and March next year.
He also thinks that this autonomic dysfunction might be having an effect on my gut and has referred me to a top gastroenterologist in London. But that will also mean a long waiting list. He also couldnt believe that I hadn’t heard back from the doctor who referred me to him in the first place. And he wants me to go back to see her because the chronic pain isnt going away.
So, basically I have to do more waiting for appointments. Things I can do in the mean time:
1. Eat more salt.
2. Play with squash balls when light headed.
3. Never stand still.
4. Sleep with a pillow under my head.
So.. I wasnt very happy with all that. But then, things got worse this week.
The realisation that I still don’t have a diagnosis. And if I am having tests in early 2013, then realistically I’m not going to get a diagnosis before then. This means I will still be ill in September. If I am this ill in September, how am I supposed to go to university? This has meant a few days of frantic phone calls, crying, more phone calls, internet searches, sobbing hysterically, and the whole house being a mess.
My tutor wants me to suspend for another year. If I suspend for another year, they wont transfer my course fees, so I will have to pay the £8,500 course fee. I realise I can get a loan for this. But if I go to university in September then I don’t have to pay any course fees.
My mum wants me to go to university in September. She wants me to go down the whole disability services route and find out how much they could accomodate me and such and such.
I don’t know what I want to do. Part of me doesn’t see how I could cope studying at university if I was this ill. But, I don’t want to have to take out a massive course loan. I really don’t know what I should be doing. Right now just trying to get through this one open university module is tough enough.
I am just so ridiculously fed up. Right, signing off. I have more studying to do. And cleaning. Plus I need to hang out with my mum tomorrow, and a baby shower on sunday. Plus finish this assignment by tuesday. And preferably live in somewhat of a reasonable state and wash my hair.
Sorry for the rant.
Any advice for when you get stuck on the floor and can’t get up again? Chronic pain sucks.
[Image: 6-piece blue colored background with a Siamese cat with blue eyes. Text reads: “Experience new kind of pain, have no idea what to do”]
Last night I got a new kind of pain (which has yet to go away) and I still have no idea what to do for it because it’s something I’m not used to.
Adjusting to chronic pain can really mess with how you approach life…