Sunday, 16 February 2014

ME Clinic - 3rd Appointment

I had my third appointment on Friday. I'm still completing my activity diaries and we talked about how I'm breaking my days up a bit better i.e. not having such big chunks of medium or high energy activities and am switching between mental and physical tasks. I'm definitely thinking more about what I'm doing during the day and prioritising what needs to be done and what can wait. I really notice my instant reaction to things that happen that are stressful and how my body and mind responds to them. My therapist spoke about how the body is often on 'high alert' in ME and sufferers reactions to stress are amplified, which I can really relate to. Pre-ME I would become nervous or stressed but now I feel like the slightest stress makes me feel quite disconnected, brainfogged and anxious which then leaves me feeling drained minutes, hours or days afterwards. It's funny though as most people who know me say that I never really look that distressed but I have a habit of internalising things..So to break that cycle I've learned that I need to delegate tasks to my other half so I'm not taking everything on, leaving things that don't need to be actioned straight away and practising more relaxation. I also need to stay in the moment and not start catastrophizing (I know I've slipped into CBT talk now....) I think that's where mindfulness would be really helpful.

We also chatted about exercise. I'm having to give up my yoga class due to moving house and the location of the class which is a real shame as I've been finding it very helpful. I'm on the lookout for another though and in the meantime have ordered the Beat Fatigue with Yoga DVD which I've used in the past and would recommend. The therapist has given me some stretches to do and if I get on ok with them then we'll look at some others at the next appointment. She's been adapting them to a yoga style which makes them a bit more interesting to do.

So until the next appointment the main focus is to be more zen like :)

                                                  Photo: taken at Lake Como September 2012


  1. Moving house must be so stressful and difficult with ME! I hope you are coping ok with it all. Glad you are find these appointments beneficial, is it an occupational therapist you see or just an M.E specialist? I saw on OT a few times last year but didn't find it too helpful after the 3rd or 4th app, as I was just being given hand outs and leaflets which I already had. Will see if I can find some of the yogo DVDs you recommend and give that a go :)

  2. Hi it is a bit! And we only just moved to this flat in June so a bit of an upheaval but will be worth it :) Most of the stuff we brought here is still in boxes anyway so not too much to pack up..
    I see a physio at the clinic. There is also a psychologist but I don't feel I need that intense CBT work. For me its mainly about building my physical strength now. I know what you mean about the handouts. it can be frustrating when it's stuff you already know and most of us are pretty knowledgeable about relaxation pacing etc. i think its useful for me to see someone every week or two though to ensure I'm actually putting these things into practice. And yes the dvd is very good. There are even some techniques for doing in bed x

  3. I know you've moved house now, and managed that without too much payback (last time I saw a tweet, anyway) so well done with that - it must be a relief to be in!

    Having someone to "report to" probably does help with putting the pacing into practice more effectively. Like you, I know what to do really, but have been pushing limits because no one is really "watching". I'm trying to get better about that, and to cooperate with my body rather than try to overrule it. ;) Your posts are one way of keeping me on track!!! (Thank you!)

    Hope the rest of your settling in to your new house goes really well, and that with work and home, you can keep tweaking the balance until you've got it optimal for you. As I said on Twitter, you're an inspiration! x

  4. Thanks Jo what a lovely thing to say (I'm blushing!) I'm just going to blog about the big move and my fourth appt.
    But yes I totally agree about pushing limits. The whole invisible illness issue, lack of advice and support at the start and the fact that nobody sees how you are feeling is really tough. I used to push the boundaries a lot, mainly because I regained my health enough to feel part of the 'real world' by still being able to work etc. so would try and socialise as much as everyone else and go to the gym etc. only to feel absolutely wiped out. There was a lot of denial. I just couldn't believe that this could happen to me and didnt 'get' the post exertional malaise. I just kept fighting against it. I think now I'm older and wiser (sometimes ha ha!) ;) I'm happier to live within my means and be more self caring and it seems to be working for me. I'm glad this blog resonates with you and is helpful :) x