1 year treatment anniversary!

Hello there,

Well, here I am, 365 days after writing The Results Are In – I Have Lyme Disease. I think I’ve said this before about my time in treatment but I’ll say it again, it simultaneously feels much longer and much shorter than a year. When I’m laying in bed in lots of pain, unable to tolerate any light, the minutes seem to crawl by, but then I can blink and yet another month has gone past.

I’ve been trying to think how best to sum up this past year, and honestly I’m not sure I can, or at least not well…but obviously I’m going to try, or what would be the point of this blog post right?

Overall…it’s been tough. ย The days where I’ve felt happy and confident that I’m heading in the right direction have definitely been in the minority. That’s not to say I haven’t seen improvements, the first 6 months, when I was on oral and then IV antibiotics, I definitely saw improvements in individual symptoms, but overall I felt worse, because I have terrible herx’s and side effects from the antibiotics. The last 6 months overall I’ve been feeling better because I’ve not been on antibiotics, I’ve been on a herbal protocol instead, but my symptoms themselves have been worse.

However I’m not sure the last 6 months really counts! haha. In January I came off a medication I’d been on for 3 years and all hell pretty much broke loose. I couldn’t sleep, my GI symptoms went through the roof, I was so nauseas I struggled to eat and even drink. So the last few months, my Lyme treatment has taken somewhat of a back seat, as I’ve just been so focused on trying to work out how to improve my GI symptoms, and unfortunately I’m still trying.

I feel like it’s been so chaotic that I’ve barely been able to catch my breath. I wish I could say I’d seen massive improvements and I was well on the way to feeling better, but I can’t. Although I’ve seen small improvements in some areas, in the main ones; fatigue and pain, I haven’t. Obviously that is pretty disheartening, actually no…it’s heartbreaking, but I don’t let my heart break every day. I have to keep wake up every morning, keep taking my dozens of tablets, do my best to support my recovery in others ways, because I just have to keep going.

I knew when I was diagnosed with Chronic Lyme disease that I would be in it for the long haul in terms of treatment, and I knew I wanted to keep a record of the big picture, not just the vlogs I’ve been doingย so I decided to capture one second of my day, every day. I’m amazed I’ve kept it up for a year, and you can view the result right here.

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Resurgent memories.

I’ve been continuing to sort out my room the past few days, just a few minutes at a time, a couple of times a day. It’s all I can manage but I still seem to be making decent progress.

I have been forced to confront some painful memories as a result of this. Sorting through old photos and university stuff reminds me what I’ve lost in harrowing clarity. My social life, my university studies, which were a huge part of who I was, were taken from me. ย Although I’ve accepted thats the way things are at the moment and feel pretty okay about now, from time to time something reminds me of it, and it brings it all back up. ย Having it shoved in my face the last few days has certainly done just that.

Nevertheless I’m glad that I’m doing it, because once it’s done, it’s done for good and I’ll never have to think about it again. I’m really looking forward to that.

I’m also much better at dealing with now, I did some yoga and that made me feel better. I also used this therapy technique where you have a conversation with a “kind and compassionate” version of yourself. It sort of helps you reason with yourself.

I think maybe I’ll take a break from sorting tomorrow. Need some time to clear my head before I start again.

Until next time.

Childhood memories

Spent the last few days crossing a few things off the my list of worries that I wrote about last time.

Feeling a lot more clear headed, and surprisingly not feeling too bad physically. Although most of today has been a write off because of a terrible headache, for the rest of the time I’ve been feeling good-ish. I say ish because a good day for me does not mean I feel good, it means I don’t feel the need to spend the whole day curled up in a ball in bed.

I even managed to make a small step towards clearing out my room so it can be decorated. I filled a box full of books, and I did something everyone dreads. I sorted out my soft toys. I did do this several years ago, but I’m doing it again and being even more ruthless. I.e. only keeping the ones that have big sentimental value. Among the ones I’m keeping are a giant turtle given to me by my godmother, a big rabbit that my grandparents got me on the day I was born (not sure why everyone insisted on getting me huge soft toys, but there you are) and a giant fish beanie baby that is weirdly called Lips. All 90’s kids remember beanie babies right? I know me and my friends had hours and hours of fun with them when we were little.

So today has been one filled with childhood memories, so I’m feeling slightly, well not sad exactly, but a bit melancholic.

My headache has returned in full measure, so I’m going to go and take some more painkillers and try and finish my book. I’m debating signing up to the website “goodreads”, but not quite sure what exactly the point of it is, if anyone can enlighten me that’d be lovely.

Until next time. Rhosyn.