Parents CFS Support Group

We had 4 people at the meeting last week (including myself) and discussed some ideas and generally “chewed the fat” about dealing with CFS/Fibro conditions. I’ll summarise them briefly in this message.

Support Group Poster:

But first, click for a POSTER that I’ve done to create further interest I hope. I have deliberately used black and white to avoid high costs of colour printing and copying – so feel free to print it onto coloured paper if you have any just to make it stand out better! Can I ask you to please put up a copy at all of your local community noticeboards, colleges, universities, schools, health centres and anywhere else you can think of. Its a good idea to keep a few copies in the car so you have them on hand when you find that perfect place! If you’re interested in the meaning of 5 person symbol used, let me know – I found it quite interesting and relevant to the group.

Meeting notes:

In brief, here are the ideas we discussed at the meeting on 6th May:

– meetings may be easier for people to attend if held on a Sunday afternoon (please let me know what you think)

– some doctors are better than others – one who comes recommended is Dr David Valen in Kelburn

– dentists who treat CFS/Fibro patients and have some knowledge about it – anyone know a good one?

– alternative therapies – some good and some not – works for some but not others

– ideas for CFS/Fibro children & young people to have some fun – without tiring them out!

– pain relief & medications – what has been helpful/what has not

– energy management – keeping red (high) energy activities balanced with green (moderate) energy activities

Next meeting:

No date has been set for another meeting yet, but if you’d like to meet on a Sunday afternoon, we have had the kind offer from one member in Whitby to use her large lounge for a gathering some time. Otherwise, we could meet at a cafe somewhere – whatever works best. Send me your thoughts on when and where you think would be a good option for the next meeting.  If you would like to attend a future gathering, please please contact Nicola.

Parent support meetings plus parents & children gatherings:

Also, after talking to a counsellor friend, she advised that it would be best to keep some meetings of the group just for the parents – so not with the children present. Not that they shouldn’t be included, but there is more freedom for parents to discuss worries and concerns without the children having to witness and absorb those worries if we meet separately sometimes. As I said in the poster, there will certainly be some thought put into arranging a gathering for the children/young people too (perhaps a movie afternoon could work some time over winter).

Teen Time Out group:

Some of you may be aware that I am involved with another group, set up by myself & another Mum (Pam Lyons) last year. Pam’s daughter has Arthritis, and Arthritis NZ support us by allowing us to use their rooms for meetings. It may be useful to combine the 2 groups at some point, for the children & young people activities anyway. We only have about 6 members in any case, as we have had trouble getting it off the ground. Hopefully this Parents support group will attract more interest and we’ll capture more teens in need of support that way. The Teen Time Out group has a Facebook profile, so if any of the children want to join it, they just need to have a Facebook login. Just go to Facebook page.

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