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Thursday, 21 August 2014

Appointments Are Like Buses

"Patience is not simply the ability to wait - it's how we behave while we're waiting."
Joyce Meyer

So last Friday was the first of four appointments I have this month. I would say hospital appointments, but one is at the dentist. I guess that doesn't count, but it is at my local doctor's surgery. Close enough? Anyway, on Friday I travelled to my beloved Belfast City Hospital for an MRI. They were scanning my hips and legs to help determine how my Muscular Dystrophy is affecting me. Or something. I don't really know what they're looking for, just that it's part of Operation Diagnose Bloo.

I kinda knew what I was in for because I'd had one before, also in a bid to diagnose me. They had scanned my brain because some forms of MD affect the brain, but nothing turned up on mine. I mean, a brain did. And some abnormal white matter that my neurologist said was 'probably asymptomatic'... whatever that means. I probably should have questioned him more about that. Anyway, I kind of forgot how sucky MRIs are. 

Things were made worse by the fact my dad kept me almost half an hour late. I had repeatedly told him the form said to be fifteen minutes early, but he did the old 'dad knows better' routine and gosh, I thought I was going to blow my top. I have to say I'm not the most punctual person ever, but that is something I have tried my best to overcome. So I was ready on time and right around the time we were supposed to leave, my dad decides to jump into the shower. I would be a lot more understanding if my dad wasn't usually the one stressing and getting annoyed that we're going to be late. 

We finally got there and signed in. My dad was all smug because we were 'barely late'. I reminded him that we were actually fifteen minutes late because it said to be there fifteen minutes early. He was all 'Oh yeah, and then they keep you waiting an hour. Wait and see.' I rolled my eyes and waited for the radiographer to come out and go through the routine questions with me. By the time she came out another fifteen minutes had passed, so we were effectively half an hour late by that point. We finished up my info and as expected she said that because I hadn't been on time they'd let someone else go in front of me so we'd have to wait for half an hour. My dad got all annoyed like it was their fault. I know thirty minutes isn't very long and usually I wouldn't mind, but it was the principle! If it had been me keeping my dad late, he'd have been pissed off. 

Not only that, but there was other little things that made waiting more worse than usual. Even though I knew what to expect, I was nervous. I wanted to get it over and done with. I'm not claustrophobic, but being inside such a small space isn't comfortable for anyone. Not to mention how noisy it is. Normal people discomforts aside, I was also anxious about the fact I would be lying down so long without my ventilator. I can lie down without it, but breathing takes more effort which can make me panic sometimes. I know I was going to have to go through this whether I waited half an hour or not, but there was also the fact I was hungry. I had to sit and watch my dad have a lovely scone (the City Hospital scones are the highlight of our visits. We share one every time I have an appointment) and I couldn't have any because if I had ate I would have found it even harder to breathe when I was lying down. It doesn't sound like it makes sense, but it's a thing. Also when I'm hungry my acid reflux gets worse, which also gets worse when I'm lying down. In bed I'm usually more upright because I have a spiffy hospital type bed. So when it was finally my turn I had all these worries going through my mind. What if I couldn't breathe? What if I started to feel sick? What if I wasn't strong enough to press the call button? 

When they lay me on the bed another worry popped up. The bed was incredibly hard as it was made out of metal. They decided to scan me on my side. I don't think I could have taken the weight of the weird heavy things they strap over you. That's another thing. You're literally strapped down to the bed with these heavy weights on you (I kept imagining I was in American Horror Story Asylum). Gosh, how do claustrophobic people have MRIs at all? Although being on my side was more comfortable, the metal was really sore on my ribs. I really could have done with more meat on my bones. So then I started worrying that I wouldn't be able to tolerate lying there the full time. 

All these things whizzing about in my head almost had me having a panic attack before I was even in the machine. They lay me down and I got a bit dizzy. Probably a bit of a head rush, but I really did think I was going to have a panic attack. Luckily I've gotten pretty good at talking myself down from the edge, so I was able to relax enough. They did a number of scans and in total they took about forty five minutes. It felt like ages, but the fact they supplied you with earphones and music helped pass the time a little faster than it might have. Even if the music was super dated and at some points drowned out by the noise of the machine. A song that really reminds me of my ex (and not in a good way) also came on. Talk about kicking a girl when she's down.

When it was over they brought me out and got my dad. The radiographers were both women and super nice. They kept telling me how well I'd done. Another day I may have found it slightly patronising, but that day it felt nice. I don't know why, but I felt so rough after the scan. Kind of fragile. It was nice to have someone being nice to me. My dad on the other had was less than sympathetic. I told him I didn't feel good, to which he replied 'Oh, I'm sure it was awful for you while I was stuck out here waiting'. Usually him being in a grumpy mood and belittling what I'd been through probably wouldn't bother me. He's been like that a lot lately. Belittling is his way of coping, I think. But that day I just felt fragile emotionally. I guess I was probably just tired from the extra work of breathing. He said he's stuck in machines every day of his life. Dramatic much? Oh yeah, did I mention he fixes machines in a factory? That's what he means. 

So yeah, that was my first of four appointments this month. I don't know why they've all popped up together. I knew what the MRI was for. The next is at the muscle clinic, but not with my usual doctor. I'm assuming since I was only at the clinic a couple of months ago for my annual check up that maybe my blood test results are back from London and they might have some news on whether they've confirmed I have the type of Muscular Dystrophy they think I might have. I hope they have some kind of news or else my dad will be annoyed at a pointless trip. I'm thinking of possibly having my sister take me instead, but I don't know. On one hand I'm a little nervous. My whole life I've had Congenital Muscular Dystrophy. I'm not sure I feel ready to start telling people I have something different, even if it won't actually change anything. So I kind of feel like I'd rather have one of my parents there, but then maybe not if my dad is just going to belittle things and stress me out. My mum hasn't been able to go to my hospital appointments since they gave me 18 months to live when I was 12. She gets panic attacks. 

Then there's the dentist appointment. It's pretty straight forward. After that I have another respiratory clinic appointment. It's another mystery. Last time I was there my respiratory nurse she said she'd have me back in six months rather than a year because of my panic attacks, but it's only been three months. The only reason I can think of for me having one so soon is that I cocked up my sleep study. I find doing sleep studies properly super hard because I go to sleep so late and they want the oxygen monitor back so early. So yeah, I'm hoping that's what it is. I'm a little nervous that it's something else, but I think that's just my anxiety about my breathing getting to me. Panic attacks are still being a bitch. 

Gosh, this entry has been a lot of complaining and feeling sorry for myself. For the record I know MRI's aren't a big deal. I was just having an off day. And all complaining aside, I can understand why my dad is annoyed about hospital visits even more than usual as he's been spending a lot of time at the hospital with my granny. We're hoping she gets to go home soon though. 

On a slightly different note, I dyed my hair! I kind of did it on an impulse. It was supposed to be a slightly darker blonde, but it came out brown. It's been ages since I've been this dark! Though the bleach underneath means it's lightening up with every wash. I'm kinda glad. I miss my blonde hair if I'm honest. Still, it's nice having a change. I guess I'll finish off with a photo! 

The day of my MRI. 
While I was waiting and my dad was having a scone!
Belfast City Hospital have the best scones. 
Oh, and my hair is a bit darker in real life.
Looks a lot lighter in this photo. :) 

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