THE CFIDS SELFHELP.ONLINE INTRODUCTORY COURSE –Pt 2
Prior to the course beginning I have received the course book:
‘Managing Chronic Fatigue Syndrome and Fibromyalgia – Feel Better. Take Charge, Regain Hope’ by Bruce Campell, Phd.' and in my opinion it is an excellent read, practical and supportive, and written by a veteran of this vile illness.
As I previously mentioned, I am functioning at 30% of ‘normal’, and I was first diagnosed in 1993. I had a long period where I was able to work part time, but am now mainly stuck at home and unable to do most of the things a 47-year-old would like to do. I know I like the content of the book, the question for me is
What will I gain from the course that I wouldn’t gain from reading the book in isolation? And, to put it crudely: can this cfs doggie learn some new tricks?
My group is composed of 17 women from age 10 (her mother is doing the course for her), to 80. I am surprised at the largeness of the group, and the fact there are no males. I am assured that the fact we are an all female group, with a female moderator is purely chance and of course men are welcome to do the course and many have in the past!
17 in the group gives pause for thought- we are limited to writing 4 emails to the group per week- an eye- watering 68 potential emails popping into my inbox- eek!
Week one focused on Introducing ourselves to the group and reading the section in the book:
Introducing the idea of self-management.
The groups are strictly moderated, with the length and content of emails to the group heavily prescribed. I kept my email intro to a few sentences, anticipating there will be group members who have severe cognitive impairment.
In fact emails poured into my inbox (!), with most people using the maximum lines to describe their feelings, domestic situations, and regimes they are currently undertaking. Emails are limited to 30 lines- which seemed excellent until I saw how long 30 lines is written 17 times!! Luckily most of us only wrote one email.
I was not anticipating cognitive problems with this group, as I read and write emails most days, but it is a very different thing writing to much loved friends or Limericks for PR, than taking in a lot of new info about people you have not met.
I should perhaps put my last week in context- whilst I’m not in full scale ‘flare’ the colder weather is aggravating my pain levels and made me more prone to PEM, so I was grumpy and finding it tricky to process so much new information (the emails) when my brain was like custard!!!
(NB: At this point in my BLOG you have now read 30 lines!)
Week 2 begins with our Moderator telling us to read Chapters on
Pain and Fatigue and to share our experiences of what we do that works for us. We are asked to set a simple goal for this week: something we are 80% sure we can achieve.
This 80% seems significant, as in the past I have set myself goals that were a triumph of hope over experience. My goal: 5 mins walk per day, for 6 days a week. I have recently slid back into overdoing it some days and am unable to go out on others- the boom-crash cycle that leads to major flare-up. For my sanity, digestion and fitness (ha! ha!) I need to get my face in the fresh air every day I can.
People have responded this week, with many tips and hints that work for them. A few people are struggling with meditation/mindfulness practices and many of us wish we could pace better, as it is does seem to work for most.
In my life, pain seems to have a mind of it’s own and the only way I keep it at a moderate level is what I DON’T do: not walking, not going out, not sitting /standing up for long periods etc. Fatigue is helped by good ‘sleep hygiene’ and my clean eating….and let’s not forget medication.
So I leave you with a cliff-hanger this week: Will I fulfil my goal? Will my inbox declare itself struggling with PEM? Will I remember anyone’s name.. And will anyone email me personally?
Watch this space for the next update…
Prior to the course beginning I have received the course book:
‘Managing Chronic Fatigue Syndrome and Fibromyalgia – Feel Better. Take Charge, Regain Hope’ by Bruce Campell, Phd.' and in my opinion it is an excellent read, practical and supportive, and written by a veteran of this vile illness.
As I previously mentioned, I am functioning at 30% of ‘normal’, and I was first diagnosed in 1993. I had a long period where I was able to work part time, but am now mainly stuck at home and unable to do most of the things a 47-year-old would like to do. I know I like the content of the book, the question for me is
What will I gain from the course that I wouldn’t gain from reading the book in isolation? And, to put it crudely: can this cfs doggie learn some new tricks?
My group is composed of 17 women from age 10 (her mother is doing the course for her), to 80. I am surprised at the largeness of the group, and the fact there are no males. I am assured that the fact we are an all female group, with a female moderator is purely chance and of course men are welcome to do the course and many have in the past!
17 in the group gives pause for thought- we are limited to writing 4 emails to the group per week- an eye- watering 68 potential emails popping into my inbox- eek!
Week one focused on Introducing ourselves to the group and reading the section in the book:
Introducing the idea of self-management.
The groups are strictly moderated, with the length and content of emails to the group heavily prescribed. I kept my email intro to a few sentences, anticipating there will be group members who have severe cognitive impairment.
In fact emails poured into my inbox (!), with most people using the maximum lines to describe their feelings, domestic situations, and regimes they are currently undertaking. Emails are limited to 30 lines- which seemed excellent until I saw how long 30 lines is written 17 times!! Luckily most of us only wrote one email.
I was not anticipating cognitive problems with this group, as I read and write emails most days, but it is a very different thing writing to much loved friends or Limericks for PR, than taking in a lot of new info about people you have not met.
I should perhaps put my last week in context- whilst I’m not in full scale ‘flare’ the colder weather is aggravating my pain levels and made me more prone to PEM, so I was grumpy and finding it tricky to process so much new information (the emails) when my brain was like custard!!!
(NB: At this point in my BLOG you have now read 30 lines!)
Week 2 begins with our Moderator telling us to read Chapters on
Pain and Fatigue and to share our experiences of what we do that works for us. We are asked to set a simple goal for this week: something we are 80% sure we can achieve.
This 80% seems significant, as in the past I have set myself goals that were a triumph of hope over experience. My goal: 5 mins walk per day, for 6 days a week. I have recently slid back into overdoing it some days and am unable to go out on others- the boom-crash cycle that leads to major flare-up. For my sanity, digestion and fitness (ha! ha!) I need to get my face in the fresh air every day I can.
People have responded this week, with many tips and hints that work for them. A few people are struggling with meditation/mindfulness practices and many of us wish we could pace better, as it is does seem to work for most.
In my life, pain seems to have a mind of it’s own and the only way I keep it at a moderate level is what I DON’T do: not walking, not going out, not sitting /standing up for long periods etc. Fatigue is helped by good ‘sleep hygiene’ and my clean eating….and let’s not forget medication.
So I leave you with a cliff-hanger this week: Will I fulfil my goal? Will my inbox declare itself struggling with PEM? Will I remember anyone’s name.. And will anyone email me personally?
Watch this space for the next update…
