Everyone experiences this illness slightly differently so talk to the person about what their main symptoms are, when they are likely to be most or least affected and how they are affected. This will mean that you can be more patient and empathetic to the person when e.g. their Brain Fog is particularly bad.
–The Optimum Health Clinic, Carers’ Support Pack
For a few months there was a Kuwaiti family living on the first floor of my London building. They were warm, friendly and curious about my condition. They even expressed sympathy when I talked about some of the social challenges of CFS and I loved it whenever they invited me over.
But one day I couldn’t come down. I was indeed in my flat but as I explained in my text message, I wasn’t feeling well enough. Maybe we could try for another day? That didn’t go down well…
So my biggest tip for doctors, friends and neighbors of CFS patients is, be prepared for your sense of acceptance to get challenged. I now have friends in London who are also recovering from CFS and even I have to remind myself that only they can tell me whether they can handle something or not. It is not obvious from the outside and it’s not necessarily predictable.
As a friend, relative, doctor or nurse, know yourself and take care of your own boundaries first. Otherwise you may end up dumping your issues on somebody who is already disabled by the burden of Chronic Fatigue. And that definitely doesn’t help anyone.
Day 9 (April 9) – Caregiving
- As a parent with health conditions or parent to a child(ren) with health conditions, what do you hope you’re doing right? OR
- Patients, what advice or tips do you have for caregivers out there – professional or otherwise!