We asked our facebook users what they found or would have found helpful when they were newly diagnosed. Here’s what they said.
I wrote a letter and then shared it with friends and family. I was amazed and surprised by some of the responses. Disappointed by others, but it felt good to let everyone know what I was experiencing.
I photocopied the WHO guidelines and definition of M.E. and gave them out as needed and for family. I also gave them a copy of a pacing pamphlet - and learned to say NO.
I avoid makeup now. Folk say "but you must be getting better - you look so well" when I am struggling to remember my name let alone the shopping list!”
Go to foggyfriends.org
Action for M.E.’s magazine helped me the most. I focused on people who had beat it and tried their ideas. Also general advice in the magazine. Also the phone lines.
Make sure you have a good GP. If he or she is insulting or pretends that you are invisible then try others.
Best thing to realise is: YOU know what is going on in your body better than ANY doctor.
Claire Vardy Hetherington
I had to pay private to get diagnosis, as such a long waiting list to see specialist. Best advice I could give is don’t fight it, listen to your body and join a group online so you know you aren’t alone, this helps.
First and foremost get yourself calm, accept things, know where you are going, what the future probably is and how it is all going to impact on those around you including work colleagues, church people, the man in the street (parking issues) airlines (flying issues). Do this for yourself and see the difference it makes when dealing with others. Trust me - been there and until I took the path I am suggesting, I won no battles and just got more and more exhausted and frustrated and angry.
Maybe a card like many hearing impaired people have, saying something like, "I may look fine to you but please be sympathetic if I need to sit down, take a rest, or leave early. I have a debilitating neurological disease called M.E." - or something similar.
PS. the other day I was challenged by someone who lives in my street, when I parked in my own disabled bay. He wanted to know if I was disabled and continued to rant that there are people using disabled bays who are not disabled. It would be good to have an ‘official statement’ laminated card from Action for M.E. maybe? I get fed up with people asking me what my symptoms are, then.
Note from Action for M.E.: Our Supporting, Lifelong and Professional members now receive a membership card which lists symptoms on the back and we produce a dashboard notice which people can print off and display with their Blue Badge.
Something I've learnt over the years is to always have available with me, in my handbag, a simple description of my illness and symptoms. If you live in or visit a different country it's also a good idea to have a translation available. It saves trying to explain yourself when you are too tired and need help or understanding.
I use the internet and e-mails to send family and friends useful web sites and pages to look at if they want to know more and also send them latest updates and information.
I feel the internet is invaluable for people with M.E. who can learn more about their illness, share information and find help and support. There are many chat rooms and groups. It really helps to have contact with other people who suffer the same who will truly understand. It helps with the isolation, frustration and loneliness.
You can also set up Google alerts on CFS/M.E. that will be sent to your e-mail address and so thereby you can read the latest information and news on the illness as well as look at other blogs.
Note from Action for M.E.: You can try our forums, bookmark our home page or news streams or link up to our RSS news feed to get all the latest information too.
I was isolated for ten years with little or no contact with the outside world. For my 50th birthday, someone bought me a computer as a present and I was consequently dragged into the 21st century. I couldn't spend long periods of time on the computer but all of a sudden, I had a tool to enable me to make contact with the outside world. The beauty of this, as opposed to the telephone, was that I could control the time I spent on the computer and could stop and rest as and when I needed to. Suddenly, I had contact with people I hadn't seen for years. I could chat with friends abroad who I had lost contact with and above all my nephew who lives in another country.
I started to write, small periods of time to start with. I joined a writing site and made a lot of friends with similar interests from all around the world. Then of course there is the Action for M.E. page. To find a community like this, with people that really understand each other, know what you are going through, are there to support you on your bad days, is an absolute God send.
To new users of a computer, I would say start in small doses, see how you react. Get your eyes tested, make sure you have the right lenses in your glasses for looking at a computer screen. Start with five minute periods and build up from there. Some people are unable to use a computer, but I have found things like text to speech and voice activated software very helpful in that respect. There is other software out there too if you look for it. I would highly recommend anyone to try a computer, it can change your life. It did mine.