Knowing someone who has Cfs/me must be so tough to support, encourage or love even. I know I can be tough!
- Never out of my pj's!
I have Cfs/me, diagnosed by a consultant and everything, I think in 2014! I will let you know here a few little things that can make a massive difference to our social being, and more importantly our relationship with you... (which I love by the way!)...
Mostly its trial and error, due to each of our experiences of Cfs/me being so different. But try to remember and track what works, be aware that our symptoms come from nowhere too so expect randomness!
The main things that we need are;
- No Judgement
How 'You' can help someone in chronic pain...
Occasionally take a little breather in conversation, this allows our brains to process what we've been on about, especially if there are tooo many details -
- Don't plan anything with too much of a walk
- Try to be sure of rest spots
- Naturally, allow us to set the pace
- Offer to rest often, even better just do so anyway as we dont always like to admit we need to stop
- There is also the chance of us perching on the edge of something random or sitting on the floor in a store, or on the pallet for the bags of sugar! (I don't think this is just me?haha) etc...
This one is quite crucial, if we are not in a comfy or supported chair, it will simply bring on extra pain and discomfort to what we already have...
If we're not comfy, we tend to end up focusing more on 'omfg that hurts/aches/pulls' than anything else that's going on... If meeting outside of the home attempt to go somewhere with a variety of seating...
Calm environments are best - *When in busy/noisy environments we lack concentration, also we tire much quicker..
This leaves us unable to focus fully on our conversation, we end up not knowing whats been or being said...
We can be a little delayed in most things... Perhaps don't always expect an answer that's relevant to your conversation, we tend to overlap and butt-in as we remember things being said, so it may be a little bit of a stop-start discussion.
Our pace is slower to minimize many things, pain mostly but our minds do seem to wander and get confused quite pronto too.
I think everyone can understand non-verbal messages. Take the time to read our facial expressions, posture & gestures etc.
The need for us to change position lots, fidgeting, stretching, bending, rubbing muscles, moaning and groaning doesn't necessarily mean you need to leave but watch for the;
'Okay, I'm done now' face!
Pass no judgement;
For; Yawning and watery eyes whilst you're telling your stories.
We may even lie down & fall asleep! Please know this is not us being rude, we just cannot do it!
For; Not always understanding something that seems pretty straightforward.If we cancel our plans last minute, please don't think we didn't try, we literally get so overwhelmed at the prospect of our meeting, its like we've already been out!
Another few good ones you can help with are;
Try to not send long text messages or emails etc, we flick read, pick out keywords to kinda guess what it's saying & hope for the best!
Sometimes, or most of the time your phone-call will go unanswered (even though you know that it is probably in our hand).
We want to answer, we try to answer! Then we lie down as our energy levels crash to near zero.
Along with thousands/millions of others, this is our reality! It's real and it destroys. I think we are all united in our need to simply be believed and supported...
It's such a controversial illness! I'll admit if I didn't have it, feel it and have to live it, that I may not have believed it to be possible having such sporadic random pain & symptoms. get it, it doesn't seem right. It doesn't feel right either!!!
The Fatigue part of it for myself can at times be the hardest. The pain I can tolerate if left the bloody crikey alone to manage it when need be. But the fatigue just sucks every one of our teeny cells to the floor, gravity wins!
I'm there and listening but unable to communicate other than the odd grunt to say/mean 'I'm Fine', my fine!
Do you recognise some of these behaviours?
Is it a friend that you visit or someone that you live with who has cfs/me?
What are your main worries with supporting this person?
Do they fall asleep whilst in conversation? (This is one of my main party tricks)
I would love to hear your experiences of having a Cfs/me buddy/babe/boss...
Be kind always,
Love Jorja x