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??


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.


6 thoughts on “A Step In The Right Direction

  1. Hey 🙂 the worst days are always when there’s an appointment for me too. So irritating. I have been reading your blog for a while, but rarely comment, but I wanted to make a suggestion. I’ve been tracking my progress using this- http://phoenixrising.me/mecfs-basics/dr-bernes-chronic-fatigue-syndrome-mecfsfibromyalgia-symptom-checklist-2
    It’s a symptom list. I rate each symptom out of 10 of how bad it’s been and then I can compare it over time. I do it weekly because my memory can’t cope with longer time periods, but you could do it monthly instead. Then you can add them all up and get an overall rating. I’ve not been doing it long so I can’t say how useful it is long term but I thought you might want to try it out.

    Liked by 2 people

  2. Good to hear that you feel there’s been some improvement – however slight – and that you were able to face the appointment with a degree of confidence 🙂

    I like talkingthroughlife’s suggestion. It has to be said that I am extremely bad at keeping a diary of how things are – partly because my health was barely up to it at the beginning, partly because I’m not that kind of person and partly because I find it quite demoralising focusing on symptoms all the time. However, I do have a few odd records here and there – compiled each day for a week (or in once case a month) – and I have found them really useful for two reasons. Firstly, it makes it much easier to see progress a year or two down the line. Secondly, it’s good evidence when it comes to filling in all those blasted forms the DWP insist on! When I can say, definitely, that I have walked x number of yards, or climbed x number of stairs or been out x many times in a day, week or month and what happened as a result, it’s a good deal more convincing than ‘well some days I can do stairs and some days I can’t’ or ‘I get a lot of pain’ or whatever.

    Incidentally, I got round the first problem (being barely up to keeping such records), by using a colour coded system for activity levels (filled in for each hour of the day) and then a numbering system for symptom severity (filled in at the end of each day). Climbing a flight of stairs was represented by a red line for example – major expedition but doesn’t take an hour! Then I would have whole mornings or afternoons in blue hatching – which meant lying in bed doing absolutely nothing.

    I got round both this problem and the others by only keeping the records for limited periods (e.g. a week) and then giving myself a break.

    Liked by 1 person

    • Thank you! I must admit I’ve avoided keeping track of my symptoms for so long because I’ve just been getting worse, and I don’t need a symptoms tracker to tell me that. However now things seem to be a bit easier I think it would be a good idea. I like the idea of colour coding too. Thanks! 🙂


  3. Oh yes – and the records were also helpful for pacing. I could see very clearly what was ‘safe’ to do and what wasn’t – from time spent walking or sitting up to that spent reading, talking or on my laptop. Several weeks or months later, I could do another assessment and see if the symptoms had lessened and hence whether it was worth trying to push the boundaries a bit. That’s how I got to the point where I am now, where I (mostly) have very little pain unless I do something ‘stupid’. (Which is not to say that I don’t take a calculated or ‘stupid’ risk, sometimes, but just to say that I know exactly what I’m doing when I do!)

    Liked by 1 person

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