2017 – The Year Of Waiting

Hey…remember me?

I know I know…I haven’t written anything on here in ages. Please believe me, it’s not for lack of wanting to. There have been many times when I’ve seen or read something that sparked an idea, but I just haven’t had the energy to translate that into me actually sitting down and writing words.

The second half of 2017 has been a white knuckle ride, which I’ve barely been able to cling on to at times. This has been well documented on my Youtube Channel (which you should definitely go and subscribe to, I’m really close to 100 subscribers and I post a new vlog every Sunday), but I want to talk through it here as well and reflect as we wave goodbye to 2017.

There have been 2 main themes running through the second half on 2017; pain and nausea. Those two things, along with worsening PoTS, has meant that the last few months have been very rough.

After my birthday, which was the last thing I wrote about on here, I had a few weeks where I had horrendous pain around my jaw and neck. It meant I was constantly on the verge on a migraine; I couldn’t tolerate much light, I couldn’t move around, I couldn’t concentrate for longer than 15 minutes, I couldn’t even talk for very long. After dithering about which sort of doctor I should go to, I went to the dentist because I remembered him mentioning to me that I clenched my jaw the last time I was there. He promptly informed me that all my jaw muscles were constantly spasming, which ya’know…would probably explain the pain! He made me a mouth guard to wear at night that started helping almost instantly, which was amazing!

However, no sooner had I got this sorted another part of my body started vying for attention. This time my stomach. As I’ve written about on here previously and talked a lot about in my vlogs, after coming off Mirtazapine at the end of January all my GI symptoms; nausea, bloating, pain after eating etc. got A LOT worse. I’ve been taking Cyclizine since March which had been working very well, but for some reason (still unknown to me) at the end of September stopped working. The few weeks that followed well hellish, I couldn’t eat properly, and I couldn’t sleep either because my GI symptoms were really bad at night. I was at a complete loss for what to do, and to make matters worse it took me weeks and weeks to get a doctor appointment to talk about it. Eventually it resolved by itself without me or any doctor working out why.

Pretty much as soon as that was sorted out, my pain levels started rising again. This time with nerve pain in my face, caused by the very mouth guard that had been helping my jaw pain, I stopped using it and slowly the nerve pain got better, but of course the jaw pain came back. Although I have to say, the jaw pain is preferable to the nerve pain, which was unbearable.

There also been a subplot for most of this year of me trying to get medication for my PoTS. My cardiologist messed up twice in quick succession, meaning that I know have to wait months for a face to face appointment with him before I can get a new prescription. I would say this is actually the most frustrating part of my year, because it’s been such a long winded process and everything else I need to do, all my next steps in my treatment for Lyme cannot be taken until I get my PoTS better controlled.

I would class 2017 as the year of waiting. I came off Mirtazapine at the beginning of the year and had to wait until I got through the really horrific withdrawal, and I had to try and wait out the worse GI symptoms that surfaced after that. The middle of the year I was waiting for an endocrinologist and gynaecologist referral to go through. Then the end of the year I’ve been desperately trying to get an appointment with my GP and new PoTS medication.

Unfortunately I have very little to show for it. The one success in there is the gynaecologist appointment where I was given a couple of medications which mean during my cycle I’m not bed bound anymore (yay). The other really great thing that happened this year is that we got a kitten! One of the last videos I posted on here was when we first got Archie, but one of my vlogs has some really cute footage of him going outside for the first time.

It would be easy to imagine that all I’m feeling right now is frustration and anger, and sure there is a bit of that, but as I said there have been some good bits of this year which helping to temper the negative emotions. I also feel like I’ve grown a lot this year. I know what’s best for me and my body in a way that I’ve not experienced before. I read the other day that up until the age of 25 you’re a different person every year, and that’s been especially true since I’ve been ill.

Who knows who I’ll be or what my health will look like this time next year. I’d like to think I’ll be doing better; I have a plan with lots of things to try, but I’m going into 2018 at peace with whatever it’s going to bring, and that feels good.

I wish I could say I’ll definitely post on here more regularly next year, but it completely depends on how my health is. As I said earlier, I post a new video on Youtube every Sunday, and I also use Instagram quite a lot too, so if you want to keep up with me then those are the best ways of doing that.

Talking of Instagram, I thought the best picture to accompany this post would be my “2017 best nine”, because it pretty accurately sums up my year.

rhosynmd.jpg

I hope everyone has a wonderful start to 2018.

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4 thoughts on “2017 – The Year Of Waiting

  1. I would echo what snowdroplets said. A friend I used to do circus stuff with has pots among a whole raft of other things and as with Fiona I really struggle to even imagine how I would cope with such a raft of physical problems.

    Wishing you much more comfort and healing for the new year.

    Liked by 1 person

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