Anyone else get no visits from family or friends & ... - EDMESH
Anyone else get no visits from family or friends & have no support from others ?
Hi Lainey40
It's sad when even family and friends don't sympathise with this still poorly understood illness. But it's not an easy one to understand. People see us when we are able to be out and about and don't see us when we're in bed or don't realise we go to bed at 7 pm.
We have to keep saying what we can only manage to do and not to let people off with careless comments when you have managed to do something only because you have rested the day (or days) before and after.
The symptoms can appear trivial to well people so I say "it's an ill tiredness with a flu feeling and a muzzy head and weak legs". Then they agree that's not how they feel when they are tired.
Leaflets from the two national ME organisations can help people to understand : The ME Association and Action for ME, they're free.
If you are in the Lothians, there is a new service for ME/CFS : at the Astley Ainslie Hospital, Edinburgh. You can be referred through your GP. It's offering a 'how to manage ME/CFS' service only - there's no treatment as such but could be helpful.
At the Thistle Foundation, Craigmillar, Edinburgh, there is a Lifestyle Management Course for chronic illness which could help if you're feeling isolated and if you can make it
to the sessions.
Being with others in the same boat can be really good - a self-help group if there's one in your area - they don't need explanations, they know how you feel. If you can't get to
meetings, social activities etc, they probably have a way to contact oneanother by phone or email or snailmail. Or you can join one online: edmesh.org.uk
Hope things get better for you.
Thank you very much for your kind words and I will definitely look into these ideas thanks
If you are a member of edmesh there is a good book in the library for friends relatives and co workers to read. Contact the librarian via the details in the newsletter.
there's also the edmesh facebook group which is very supportive
Thanks very much I will look up the Library book. I'm not on Fcebook but have a fee people on Twitter with the same illness so we try to support each other from afar. Thanks again
i get no support at all from my family. I know i have ME. I also have spinal and hip arthritis and 8 weeks ago had a full hip replacement. my surgeon wont consider doing my right hip until I am off opiates, so with the support of my gp I cut them down, result? constant pain and sleepless nights, chronic daytime fatigue and somnolence. Familly's attitude? Pull yourself together, grin and bear it
Hi, Can totally relate!! For me family and friends do tend to give off the vibe they don't sympathise. Or when I'm really feeling rubbish on a particular day. I feel nobody cares! You have to just think positively and remember no one can ever truly understand until they are in the situation themselves.
My wee sis who has always supported me in anything, has had trouble understanding. When I confronted her about it she admitted she finds it hard to realise how ill I am and simply forgets with me having more good days than bad just now. Sometimes you need to just open up to them and make them understand! Why not, Ask them to visit! Telling them how you feel may make you realise they care more than you think.
Also showing a print out on the illness did help. Keeping a diary of symptoms can also help off load the feeling of needing to vent to someone.
A poem ironically called 'Me'
" I prayed endlessly to God to bring someone wonderful into my life. Sometimes I wondered if he was listening at all. The days passed and I still searched for that special someone who was going to change my life. They never came. One day I looked in the mirror and as though I saw myself for the first time. I realised that person was already there. It was me!
Hi Lainey
I find that family and friends frequently don't understand, don't know what questions to ask and don't know how to deal with something like this. I got a fraught message from a family member, which was how was this going to affect them as soon as they realised it wasn't they disappeared back into the aethyr. Remember, this is their problem, not yours, try to find local support groups and if you can't find one, start one, be the change you want to see.
I am amazed by the amount of love and support I have received from facebook friends who have M.E. and those who don't, I feel this is partly because I try to show a positive outlook because I believe that we attract what we send out into the world. Someone I am close to sends out a a 'poor me, professional victim' attitude and lives in constant doldrums surrounded by similar people.
I am sending you love, healing, encouragement, support and positive energy to get you started on that new path to a happier you.