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Wednesday, 9 April 2014

My Small Swallow and Other Stuff

"The best thing about the future is that it comes one day at a time."
Abraham Lincoln

I thought before I popped off to bed to read for a little while before sleep, I would write a bit about the last two days. I mean nothing much happened, but a couple of things did that I thought were worth giving you an update about. 

So starting with yesterday, I had my appointment with my GP about my swallow. I've mentioned a little about it before, but over the last year I've started to choke quite a lot. I've always had what my mum calls 'a small swallow' and as a child I would choke easily on hard sweets. Werther's Originals were forbidden! Then maybe around two or three years ago I started to choke on steak, and then Pot Noodles. I had quite a scary choking episode in a restaurant on a bit of steak, and I've not really ate it much since. As I've said before, choking in the privacy of your own home is one thing. But to choke in public is another. Despite choking almost every time I ate Pot Noodles, I still persisted. I figured I was doing something wrong. However within the last year at most the list of foods I struggle to eat has grown quite a bit. To the point where eating out is too stressful, because I'm afraid I'm going to choke. I'm a little more relaxed at home and find it easier to eat there, but I think that may be partially due to difference in posture. Usually when I'm out I am in my electric wheelchair, sitting more upright. At home I sit in my manual chair, and tend to lean forward. The things that seem to cause me the most trouble are stringy foods or foods that have more than one consistency. The reality of just how dangerous this kind of problem is too well known to my family as we lost my uncle John after he choked in the dining hall at breakfast one morning in the care home he lived in. Still I didn't really accept it was a real proper problem until the last few months when it's really started to impact on my life. 

My older sister who works in care really encouraged and advised me to go to the doctor about it, she said I should see a Speech and Language specialist. Others had also advised it too. I put it off for a long while, but last week when I was unable to eat anything while at a restaurant for Mother's Day I decided I couldn't wait any longer. I mean I was going to wait until I seen my neurologist, but he's a little hopeless anyway so I figured maybe getting a head start on a waiting list might be the best idea. From research I've done and just common sense, I'm not expecting there's much can be done. And I had prepared myself for that when I visited my GP yesterday to ask him to refer me to Speech and Language. He said Speech and Language should basically be able to tell me how to manage it and tell me what kind of foods I should be careful of and ways to cope etc. He also said (like I guessed) that my neurologist would have access to Speech and Language therapists who would be more specialised in dealing with people with muscle wasting conditions. So he said he'd refer me on, but to definitely tell them at my next neurology appointment. Which I had planned to anyway. 

I think my mum was a little disappointed. I tried to tell her I didn't think it was something they could 'fix'. And I just wanted to know the best ways of coping with it etc. Still, she seemed to have it in her head they would be able to do something. I think it's more worrying for her than anyone because it was her brother that died. She's always found it hard watching me eat, because she just finds it really scary and thinks I'm always choking. Even before this actually became an issue. She used to never let me eat if I was alone, and even now sometimes phones to check I'm okay if she's left me knowing I'm going to eat. I guess now it's an actual issue, it's even more scary for her. Still, I feel better now that I'm on some kind of waiting list and I'm going to talk to someone about it. I hope some good will come out of it.

But yeah, was a nice little walk to my local Health Centre to see my GP. I did my make up and everything because my GP is kind of fit. And sometimes they have stand in GP's who are even fitter. Once I got this really hot young guy when I went about my tension headaches. Dude had to feel for tension in my neck etc. Most action I've had in the last few years. I was so embarrassed, I didn't even wear make up and looked like a state! Aha. I didn't make that mistake yesterday!

On a side and final note about yesterday though, anyone else noticed how doctors seem to age really fast? I know it's a stressful job and all, but gosh.. the only person I've seen go grey as fast my neurologist and my GP is Obama! Still, my GP kind of rocks it. I remember when he first started we thought he had the worst bedside manner. He kind of shows no emotion at all. He's not unpleasant, but he's not exactly friendly either. I think I'm drawn to slight indifference though, so that's why I like him. Same reason I like felines. Aha. 

Then this morning while I was in bed my OT rang. I wasn't able to talk to her because I was in bed and in Darth Vader mode (wearing my vent mask) so my dad took the call. She's finally spoken to the housing people and basically they said I just have to apply for housing like any regular person would. My dad's name is on the house we live in now, so I'm hoping that means they won't be moved as it's not tied to me in any way. She said you could fill in the application form online, so I did that today. It was a little weird. Basically there was just a little box and it said 'Reason for applying'. Which seems so simple, but presented with it my mind went totally blank. Everything just felt really silly. All I could think was.. 'how does any of this make me worthy of one of their limited number of houses?' In the end I got out of my head and wrote all the reasons I've said many times. I was kind of worried I would be mulling it over for ages, wondering if they'd got it, or if I'd wrote the right thing or if or when they'd get back to me. I was a little shocked when less than an hour later a got a call from them. The woman on the end of the phone was really lovely and she asked me some extra info and she arranged a date for them to call and do a housing assessment. Basically they'd just ask what area I'd like to be in, what kind of home I would require and that sort of stuff. So that is happening next Tuesday. I can't believe the housing ball is officially rolling. I'm under no illusion that this will happen over night and everything will move this fast. I know for a fact there's an extreme shortage of places suitable for people with my level of disability and accessibility needs in general, never mind within my town. Still, I can't help but be somewhat excited that the process is started at all. And I keep reminding myself, even if it amounts to nothing at all.. I will be happy with the fact I tried. I won't be troubled with what ifs. 

Oh, another exciting thing happened. Well, I mean it most likely won't mean anything to you.. but another Paralympian favourited and retweeted one of my tweets. I'd tweeted it quite a while ago, and kind of forgot about it. He is Kevin Rempel, one of the Canadian Ice Sledge Hockey players. I wasn't really supporting Canada during the Paralympics, but he really caught my eye during the medal ceremony. So naturally I Googled him and followed a bunch of his social networking sites. Initially it was his smile that drew me in. He's just got one of those contagious smiles. You can't help but smile when you see it. But he also just seems like a really genuine and lovely person. I completely had a fangirl moment when I got the notification that he'd favourited and retweeted my tweet. Naturally I also took a screen shot to show you guys! ...The tweet is a little cringy, I don't usually say such creepy nice things to people. Still, he obviously appreciated it. 

So finally, today I made some updates to my blog. Well actually I started last night by adding an About Me page so new readers won't have to dig out my first entry, Introduction To Bloo. Today I added a Reading List page, basically books I've read, I'm currently reading and plan to read. I'd also appreciate any suggestions. Reading has been an important part of my 'do more stuff' New Years Resolution, so that's why I decided to add a page dedicated to it. I also switched to a custom URL today, added a custom favicon and a banner to the top of my blog. I thought it might make my blog feel a little more professional. I've always wanted a site with a proper URL. I guess it's a bit of a novelty. All the customisation seems to have gone okay, however one small thing is that all but one of my posts lost their +1's. Not sure what the deal is with that. 

Anyway, I still find it amazing how much I find to write about very little. Alas, I must go to bed though. I have an early start when I wake up. I have a hospital appointment in Belfast and it's a little bit of a drive. More on that tomorrow! 

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