Friday, 7 February 2014

ME Clinic - 2nd Appointment

Well yesterday I had my second appointment where I took along my activity diaries.
But before we looked at those, I was asked to do some exercises - basically a short walk across the room then a one minute stair climb (up and down four steps consistently) and then a two minute continual corridor walk. The physio did advise me that I could have short stops or stop completely if I felt tired, so there was no real pressure but of course you know me... I had also just walked ten minutes from the bus stop to the hospital so I did feel quite worn out! She took my resting pulse and then checked it again after each exercise. I had to rate how difficult I had found the exercises on the Borg scale (see below). Basically the number you rate on the Borg scale x 10 should correlate to your pulse rate However although my pulse rate was 104 after the stair climb I rated it at around 16 which should have meant my pulse was 160. Apparently this is pretty common with ME sufferers and shows how easily fatigued we get with exercise.

Onto the activity diaries. Here is my week:  
 So as you can see there are large chunks of orange (medium energy activity) and not a lot of green (low energy) or rest interspersed with them, so the physio was quite strict with me! She suggested some ways of looking at my week and how i could incorporate more restful activities and be a little kinder to myself. But she took a pretty person centred approach, encouraging me to analyse my week and see what changes could be made. So today I have been a lot more mindful of how i need to stop thinking that I 'should' be doing things and look at balancing my day more, putting my health first. Simple changes like having a relaxing lunch, making sure I take my allocated 1/2 hour and listening to relaxation music on the bus instead of having the radio on while flicking through twitter and facebook on my smartphone - a recipe for brainfog! can reduce orange to green. The only difficulty I had was with her comment that I can't be spontaneous and every activity needs to be considered carefully - in other words keeping to a routine!

My sleep had been a bit out of kilter with thinking about the house move so I've been a lot stricter with myself the last few nights; having a camomile tea and not using the computer or my phone 1/2 hour before bed.

Next time I think we will look more at how adrenaline affects the body and the 'starter-finisher'; two subjects that will be very useful to me!

It seems like the topics being covered are pretty similar to other ME/CFS clinics. It would be great to hear your experiences - feel free to share!


  1. You're doing really well already (to my mind) but it's interesting how many of the activities are medium, when most people would take things like having a shower for granted, yet some days that can be the peak of activity!!!

    The starter-finisher will be interesting as that's me as well (surprise, surprise). And I've had a direct correlation between adrenaline/stress and body pain/fatigue - has it affected you in that way?

    Good luck with it all (again) and thanks so much for sharing your journey so that others of us can benefit from what you learn xxx

  2. Thanks Jo :) I'm aware that my ME is now mild so I can do a lot more than others can do but still find things like showering and walking a short distance tiring when pre-illness I wouldn't have thought twice about it.

    And yes stress really wipes me out. Its my biggest trigger now. I get quite irritable and fatigued, my brain gets foggy and my muscles are painful. I did a body scan meditation today and its interesting how much it can help you identify with where you are holding tension. I find it really beneficial.

    And thanks for the feedback - im pleased you are finding my experience of the clinic helpful :)

  3. It's also important to remember that what is light activity for one person can be hard activity for another. I have just started using the ME/CFS diary pro app and have noticed that I need to rest more than I do, so you're not alone in struggling to get the balance right.

    And while I agree that overall routines can be good and helpful, I disagree that all spontaneous activity should be ruled out as we have to take care of our mental health as well. I know for me that the longer I stay concentrated on only my physical health, the more likely it is that my depression will suddenly rear up and destroy everything anyway. Just my personal experience so I know it isn't the same for you, but wanted to share in case it helps.

  4. I totally agree Tamara about how everyone finds different activities more or less challenging. It is very much about finding what works for you. I think with the spontaneous stuff that the clinic actually encourages you to have time for enjoyable activities its just that I have a bad habit of squeezing lots of things into one day rather than spacing them out so personally I need to find a better balance :D But you're right its really important to ensure that you look after your mental health. Dealing with ME is bad enough without adding depression into the mix. Hope you are doing ok and thanks for your comment :)

  5. Hi Ali, I hope you are finding the ME/CFS clinic helpful. I am impressed that you are being disciplined enough to keep a diary. I know I should do this but I still have not got around to it. I'm having a pacing problem as I'm off work due to the ME but fast running out of money, am self-employed, have no sickness insurance cover so will soon have to return to work in order to keep up with bills and mortgage. I know I'm not well enough to work right now but I can't fully rest as I'm constantly worrying about finances! If I return to work, I know it's going to be an immense struggle and I will have no energy to do anything else at all, let alone anything spontaneous or fun. This is such a difficult condition to juggle and ironically, the stress that it causes makes it worse. Sorry this isn't a very positive post! If nothing else, at least others in a similar position can know that they are not alone.
    I hope your house move goes smoothly. My advise would be to get as much pre-emptive rest in as you can!
    Sophie x

  6. Sorry to hear you are struggling Sophie and don't apologise for feeling as though you were being negative, we've all been there! Pacing and trying to work and have money coming in is a big issue and like you say very stressful. And with ME stress is not something we need but is inevitable and really hampers recovery.
    It does use up energy to fill in the diaries but I've been finding it really useful in terms of how I can save energy and use it for more enjoyable activities elsewhere. Bruce Campbell's cfs website is quite helpful for ideas around the energy envelope and pacing.
    Hope you start to pick up soon and thanks for the good wishes re the move
    take care x