Concerns about local ME group

[purrsian]

Oh that carers group does sound worrying, because the carers who might be a little unconvinced about the amount of effort their sick person is putting in will have an "expert" confirming their beliefs. And that jar of goals...maybe if the goals were focused on positive thinking and tiny improvements, like "I will remain positive during a crash" or "I will make my own lunch". But "just" travelling your own country?! Wow. Just wow.

I think that one of the most important aspects of coping with ME/CFS is that you need to completely change your idea of goals. They can't be big things anymore, they have to be small daily goals that are achievable, and you have to keep flexibility in mind so you don't overdo it by insisting on completing a goal. Our health is so hard to predict and you're so right - at the end of the year, it would be crushing to discover how many goals you didn't complete if you were putting things like "travel the country".

It just shows how out of touch she is with sick person life. She'll end up putting herself in legal trouble if she's not careful, as she's giving too much psychological and health advice with absolutely no technical expertise.

At least you're out of the grasp of her crazy now My uncle said he stopped going to local CFS support after a while because they were all so focused on just complaining about their situation over and over and that got tiring itself. So in a way, I think PR is better than local meet ups anyway lol

 

[Earthlyknees]

Yes I could imagine if a support group only ever chatted about the illness that could get really draining! I guess it would work best if people met up and happened to have things in common other than ME so could chat more generally.

I agree with you re goals, unless very severely affected we don't necessarily have to abandon them completely but definitely change them to fit in alongside the illness. I also think that it is virtually impossible for someone other than the person with ME to come up with suitable or achievable goals, as it affects us all so differently and variably, and no-one can know exactly what kind of ill we feel at any one time. For me, accepting that I just don't have the level of health to keep my house even remotely as clean and tidy as I would like (at least for the foreseeable future) would be far more valuable than trying and constantly failing in the goal of making it clean and tidy! Not that this in particular was mentioned in the Facebook post, it's just on my mind a bit today, wondering how I can just relax a bit about this particular issue.

I do hope the person running these groups gets bored of doing it and stops, because I don't see any good coming out of her involvement. I am sure being pushed beyond my limits when I was first ill did a lot of lasting damage and it makes me really sad that 25 years later people are still being pushed and made worse, either by people running support groups like this person or the NHS itself with it's graded exercise and CBT approach.

 

[Invisible Woman]

I think that one of the most important aspects of coping with ME/CFS is that you need to completely change your idea of goals.

Completely agree. I would also say that this in itself is a major goal.

One of the big problems, as I see it, is that folk who are not limited by their health don't realize that actually saying no to something, or stopping a task before it is complete because that's what you need to do for your body, takes more will power than just carrying on until you drop. It took me quite a long time to realize this and I think if I had copped on sooner maybe I wouldn't be quite so ill today.

 

[purrsian]

Completely agree. I would also say that this in itself is a major goal.

One of the big problems, as I see it, is that folk who are not limited by their health don't realize that actually saying no to something, or stopping a task before it is complete because that's what you need to do for your body, takes more will power than just carrying on until you drop. It took me quite a long time to realize this and I think if I had copped on sooner maybe I wouldn't be quite so ill today.

Yea people who aren't limited by their health usually don't realise the extent to which we have to pretty much reassess our ideas on everything in our lives. You create all these values and beliefs about how you should act and what your life should be, but that's based on your old life as a healthy person. Becoming sick means that you have to reassess everything to fit your new needs. And you're right @Earthlyknees, redefining your ideas about goals is a perfect goal for us all. Much more appropriate then "just" travelling your country lol