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Thursday, 3 July 2014

Life Is A Mixed Bag

“The universe isn't against anybody. I know it feels that way right now, but I'm telling you it's not how it works. Life is a mixed bag. We all get some good, and we all get some bad. The more time that you spend figuring out all the ways the world is trying to screw with you.. well, the more you're gonna find.”
The Fosters

Gosh me, time spent looking after a small puppy really flies by. I mean, I've had a puppy before and kittens before, but for some reason with Edwin and Berty time just disappears. It seems like just yesterday I was finishing up my last blog entry and heading off to the vet with Edwin for his second round of vaccines. It was the first time I'd had him at the vet as the breeder had had him vet checked and his first vaccinations. Still, our trip went well. More has happened with him since then, but I'll cover that in my next blog. I had planned to have this entry up quite a while ago, things are happening faster than I can write about them!

Edwin and I yesterday.

So something I didn't cover in my last blog post as it was already super long was the fact I had my annual muscle clinic check up on the 12th of June. It was pretty routine and uneventful, but I felt like I needed it. I needed to be told everything was fine, even though I'd already been told that by the Speech and Language therapist and the Respiratory people. As much as I'm feeling a lot better since my anxiety and panic attacks where at their peak, I'm still not 100%. I'm still having to actively keep the panic attacks at bay.

Dr McConville seen me as usual, and he had a student (at least I think he was a student, he was kinda old) in with him. I always find Dr McConville a little weird. I guess with my disability a lot of it is still guess work, and he likes to be careful about everything... even though he kind of acts like he doesn't know much, so doesn't really give you much confidence that he knows what he should be being careful about. I told him I had seen a Speech and Language therapist about my choking, and how she had concluded that although I had a delayed swallow that it was a good one and that she believed my choking was due to anxiety. In this instance he made me feel a little better again. He said he wouldn't expect to see problems with my swallow and that it was most likely because of the anxiety. He did my usual strength tests while explaining to the student what he was doing. He said although I'm weaker than an average person and my muscles are tight and contracted, that I'm still pretty strong. He said over all they're not concerned about me and that I'm doing well, but that the main concern is my lungs. Not that they've got any worse or anything, but basically that I need to take good care of them. He really couldn't stress that enough. He told me that I should have a very low threshold for getting an antibiotic if I get anything resembling a chest infection and what's more (and something I had never even thought of) I should have a very low threshold for going to hospital if I have a chest infection so they can monitor and assist my breathing.

Waiting for my muscle clinic check up!


I've really taken it on board and in the future I'm definitely going to take better care of myself. I'm not going to put off getting antibiotics and I'm going to start getting the flu vaccination. I get a letter every year about it, but I never bother. I'm afraid of needles and particularly having things injected into me, but I think I'm a lot more afraid now of tempting fate. I mean this disease is progressive and a lot of stuff is out of my control, but if I can help prevent anything for at least a while I should take every measure.

Something happened a few weeks or so ago now that really brought home once again that we really are living day to day and we have no idea what the future has in store for us. A friend I met through Instagram who also has a form of Congenital Muscular Dystrophy was taken into hospital when she suddenly had trouble breathing. How we actually got to know each other was she commented on a photo of mine in relation to my ventilator. Like me, she used one at night too. We bonded over comparing the similarities and differences in our disabilities. Like me she retained carbon dioxide and quite suddenly couldn't do without her mask at all. She was taken into hospital and they stabilised her and were happy for her to go home. They had no idea what had caused it, at least so suddenly. She messaged me to talk about it, and as much as I wanted to be encouraging and be there for her it was tough because as I said to her, she was going through what most of us fear most. She didn't feel ready to leave the hospital even though the doctors were happy for her to and I'd talked to her one night about it before bed and in the morning I had a message from her grandmother saying she'd taken a bad turn in the night. Basically the worst had almost happened. I wasn't sure if I was ever going to hear from her again, but luckily they were able to bring her round. However the doctors decided she needed a tracheotomy. Now, this is literally one thing I fear most for many reasons. When I started having my panic attacks it was on my mind a lot, and it was even scarier to know one of my friends was going through it. Not to mention it happening so suddenly. I just couldn't imagine being in her shoes.

I've told her before that she's an inspiration to me. She's actually the person that inspired me to look into moving out of my parent's house and living independently. Again she found a way to inspire me, and I don't say that lightly. She's so bright, kind, outgoing and independent. She had so many plans for the summer and the future, and suddenly her life was just changed dramatically. And although she's had down times and she's struggled, ultimately she's come through it so positively and with so much strength. Seeing her take it all in her stride gives me courage for the future. Maybe I don't need to be so afraid.

I hope if it ever did happen to me or anything else for that matter, I'll have her strength and I hope I'm as raring to go so soon after. Right now she just wants to get out of the hospital and get back to her life. I can't wait to see what she does next. I'm pretty sure none of this will hold her back.

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