Reasons To Stay Alive – Book Review

Hello there,

So I’m going to do something a bit different today, drumroll please…a book review! Now I have no experience in writing this sort of thing, so please bear with me. The book I want to talk about is Reasons To Stay Alive by Matt Haig.

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A Step In The Right Direction

Hello everyone,

I’ve been absent for while, I know. I’m pretty sure I start every blog post with those words nowadays, but my energy is very limited as I’m sure everyone reading this will know, and I’ve had a lot of appointments the last couple of weeks, so I’ve not had any spare energy to do anything else.

Saying that, I’ve actually not been feeling too bad, although I only realised this yesterday! haha. I had a terrible nights sleep, full of nightmares (side effect of medication), and quite a bit of pain.  I finally gave up any thought of sleep and lay in bed frustrated until my parents brought me in a cup of tea. I was frustrated because I had my first physiotherapy appointment that afternoon, and it always seems that I have my worst nights when I have to do stuff the next day.

I put off getting out of bed, because I knew I’d feel terrible, and sure enough I did feel pretty bad, feverish, nauseous, light headed, muscle pain and so so tired, BUT…I didn’t feel quite as bed as I was expecting. I had the energy to put make up on, which used to be impossible as getting dressed and leaving the house took all my energy. When I was in the waiting room I didn’t have paralysing anxiety, I actually felt okay (which is unheard of when it comes to doctors/hospital appointments).

When I was back home and tucked up in bed with a much needed cup of tea, I started thinking. I had a terrible nights sleep and I still managed to leave the house, I put on makeup, hell I even took a selfie, that’s how confident I was feeling! Yes I still felt bad, but it wasn’t that long ago that I would feel this way even when I’d managed to have a decent nights sleep. It wasn’t that long ago that I felt this way all the time…so that must mean… I’m feeling a bit…better??

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Even today, although I’m feeling extra tired because I did so much yesterday, I don’t think I’m feeling as bad as before. Think being the operative word there.  I found all this hard to write for two reasons; firstly, as you know I’m very against getting my hopes up, and secondly I find it very hard to see the big picture and notice small changes (good or bad) because I’m so in the midst of it all, it’s nearly impossible to get any perspective.

Hopefully, this good phase will continue, and I’ll be able to get back into a bit more of a regular posting schedule.

Until next time, Rhosyn.

New Prospects

Hello there,

So the festivities are over, everyone goes back to work, school, or in my case, medical appointments. On the one hand I’m kind of glad Christmas and New Year are over, as I’ve explained they’re not the most enjoyable time for me. However, on the other hand, I really enjoyed the break for appointments. I had nearly three weeks when I didn’t have to worry about “saving energy” for them, I didn’t have to spend the morning psyching myself up in preparation for the question of “so how have you been feeling recently?”

That question, although it may seem simple, is the hardest question I get asked. I have to do a mental tally of how many good and bad days I’ve had since my last appointment, and how good/bad they really were. I have to think about which symptoms have been most prevalent, because it’s not possible to talk about everything, and I have to do all that whilst feeling like all I want to do is lay down and sleep for 1000 years.

In terms of new appointments I have several new things coming up. I’ve been referred to a infectious disease specialist, who has an interest in ME/CFS and who’s done lots of work with similar patients to me in the past. She’s going to completely review my symptoms to try and find out if there’s anything else going on.

I’ve also decided to get tested for Lyme Disease at a private clinic, because although I was tested on the NHS and it came up as negative, the test the NHS use is not considered conclusive by experts.  The socialist in me is struggling here, because I do not like the fact that if you pay you can get better health care, it shouldn’t be that way! But that’s a discussion for a whole other blog post, and desperate times call for desperate measures.  As many of you will already know it is extremely common for Lyme Disease to be misdiagnosed as ME/CFS, and all of my problems started after I had a tick bite at age 16, so I think it’s worth another look!

Although I’m glad that I’ve made this decision, I’m also scared. If it turns out I do have it, then the treatment is gruelling, and is not even guaranteed to work. If it turns out I don’t, they I’ll have yet another disappointment to deal with, and each time it gets harder to get over.

All in all though I’m glad that I have at least a small prospect of something new happening, which brings me one step closer to answers…which for me is like…

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Until next time, Rhosyn.