Every month I organise ME-Living room groups, meetings for people with ME/CFS. At these meetings we exchange experiences, share tips about our lives with ME/CFS, and make new contacts. I supervise 2 groups: every 1st Monday and every 3rd Wednesday of the month. (Click here for more info.) Because our experiences might be interesting for others as well, I will share the summaries of our conversations here.
The core of living with ME/CFS
The basis of living with our condition is that we are in a situation that is not our own choice, but what we can't help. So it is not our fault.
This describes the core of life in general, and therefore goes for everyone. What makes our situation distressing, is that the ME/CFS affects our health and that doctors hardly are able to help us, because they are puzzled.
Good intentions around our lives with ME/CFS
- Physiotherapy to build and maintain my muscular strength and condition, within the limits of what I am able to.
- To explore the possibilities of mobility tools, both in and around the house and further away (transport facility), so that I can be independent again.
- To find out which needs I have. How can I recognise these needs for myself? And how can I communicate these needs to my to the people around me?
- I often use self-censorship, because "they won't understand it" or I want to avoid yes-no discussions.
- To live a bit more "selfish", in a positive way.
- Not doing things anymore, because I think that others think that ...
- Being nicer to myself, being less strict.
- Taking into account more the fact that I am (chronically) ill.
- Just keep on living: everything is allowed, nothing is mandatory.
- To take more space for myself, or choose more often for myself. In short, do what I want or what is important to me.
- To drop the "mask", and thus to give in more to what I am actually able to do, instead of pretending to being better than I am.
- To find a better balance between what I want to do and what I can do.
- To have more understanding for other people. If I don't understand something, I'll ask questions first and then have an opinion. Because you can't see what someone else has been through.
- To eat healthy!
- We are amazed about the impact of healthy eating on our energy.
- Advice: cooking in stages: first prepare everything, take a break, then cook.
- Advice: making your own frozen meals or frozen pizza for worse moments.
- Sometimes we don't have the energy to cook ourselves. It is a continuous search for opportunities.
- To buy a new mattress, so that I can lie nicely and sleep better.
- To do more fun things for myself, instead of just being busy with necessary things.
- Question remains: how can I make room for this?
- Sometimes a great idea produces so much stress that it is no fun anymore. How do I solve this?
- To continue with fun courses, such as meditation, learning another language, etc.
- To go on holiday.
One of us hasn't (yet) been able to think about this. They had a bad period during the last few weeks, and therefore could only live with the day.
Questions we don't (yet) have an answer to:
- Meetings with family give a double feeling:
- It's nice to see everyone again!
- But it also gives a social hangover, because I hear what everyone else is doing. I can't do that all, and that is confronting.
- Dilemma: what to do when someone would like to visit you on a planned (resting) day?
- I would love to see them, but I also need my rest badly.
- Dilemma: planning ahead or living by the day?
- Planning ahead would be good because of the balance we so badly need.
- But planning ahead also gives stress about the future activity. Or life turns out to be different than expected, and then you have to adjust your schedule again.
- One of us alternates: planning for a period, and then living by the day for a period.
- Support from the people around you is very important, and that is lacking for many of us.
- What could we do ourselves to increase the support from our environment?
- Because of our disability, life is no longer carefree.