• Phoenix Rising needs funds to operate: please consider donating to support PR

THE CFIDS SELFHELP.ONLINE INTRODUCTORY COURSE –…Pt 3

We are nearing the end of the third week and we are preparing for a week’s break next week. I’m not going to lie- the going has been very tough here at the Hellyphant enclosure. Its inhabitants, to wit, one cfs and chronic pain suffering elephant, and her pain- suffering bull elephant, have both been more like bears with sore heads (literally in his case), than anything with big grey ears and a trunk ever could be.

The course has proved to be unexpectedly enlightening. I already have pain suffering and cfs mates, so was slightly underwhelmed at the energy needed to get to know more people by email. This week things have turned around, and I have had some individual and friendly correspondences, which have proved to be supportive and helpful…and a heck of a lot easier to process than on week 1.

Some of us have posted photos on our email accounts and (my suggestion); some of us have taken to putting our level of function and what we have, when we sign off. So I am: Helly, cfs, 30%. The idea of the level of function is so that those of us unable to shower at times, don’t focus too much on advice from a 60% person. It really hasn’t led to any kind of apartheid, as most of us can identify with having more energy…or less…than we do now.

I am still having pain flare-ups every couple of days, so rather depressingly I failed last week’s goal (5 mins walk 6x a week) in the first two days. Of course there is no sense of ‘having failed’ in reality, as the purpose of the course is to learn, not to be perfect to start with.

This week we are given pacing as a topic at the beginning of the week and asked for feedback. Then midweek an additional topic is added and we are all asked to contribute to the conversation.

So what have I learnt so far? Well, the book is a useful handbook for anyone with ME/cfs/Fibro who is not in the first stages of grief and denial, the group members are supportive and helpful (as we know from PR it is amazing how people with almost no energy will spend time writing to help other people to feel better.)

Starting the course has forced me to confront the grim realities of where I am with my health at the moment. This is HARD, and I am glad to be well on the path to accepting this rather than in the early stages after diagnosis.

When I received my copy of the course book, and assessed myself, I was considerably stronger than I am at the moment. I have been planning my days on the basis that my energy envelope is 2.5 hours ( this is I must admit is ‘slightly’ over the definition of 30% function in the book..And let’s be honest, I have been trying to do 3 hours on a good day). As I seem to be in almost permanent flare-up at the moment, I need to rethink and perhaps place myself nearer the 20% mark – budgeting energy for 1.hour a day! I don’t know how this is possible, as it takes more than an hour just to get washed and dressed and do laundry and meals….do I stop doing everything that keep me sane? Reading? Writing emails? Drawing?

So far this course is a way is proving to be a way for me to diligently read the book, to set myself some goals and to question my own perceptions of the illness, and to learn from others experiences. I am glad to have next week off but I will look forward to what else the experience of doing this course will offer.

Comments

"and (my suggestion); some of us have taken to putting our level of function and what we have, when we sign off. So I am: Helly, cfs, 30%. The idea of the level of function is so that those of us unable to shower at times, don’t focus too much on advice from a 60% person."

That is such a good idea!

Thanks for talking us through your experience, it's interesting to read. :)
 

Blog entry information

Author
hellytheelephant
Views
118
Comments
1
Last update

More entries in User Blogs

More entries from hellytheelephant