explaining my ME/CFS to friends and family
Posted , 6 users are following.
I am currently undergoing a diagnosis of ME/CFS.. it has taken a long time for doctors to understand and refer me to a clinic.. However, it is hard for my friends and family to understand what I am feeling like, they have the mind set that i'm just a bit tired.. I try and explain my good days as if I'm walking through thick mud that is up to my neck, and on my bad days, that mud solidifies and i can't move.. Does anyone have any good ways or suggestions that can help me explain my condition to loved ones so they might understand a bit more? thank you
2 likes, 4 replies
carol40017 georgina10458
Posted
Dear georgina10458. I have the same problem. My family don't understand, the only people that have supported me are my work friends,I worked in a nursing home. I don't think you can convince people you love your I'll. I think you have to just listen to your body and look after yourself they will either come round or not! I'm sorry but it's hard enough fighting through the illness,your family will just make up their own minds. Sorry
georgina10458 carol40017
Posted
Thank you for the honesty! It's true if people haven't experienced it themselves it's tough for them to understand and maybe not worth wasting energy
Fidd georgina10458
Posted
It could be that you're just not going to be able to get others to understand. It's complicated, and we all tend to avoid putting effort in to truly understanding the hardships of others.
?It could be worth linking to a couple of good articles? There was a new piece out last week that could be of interest: "Time for Unrest: Why patients with ME are demanding justice"
jillian27195 georgina10458
Posted
Hi
I have already written before about my own experience on this site but your description of how you feel so matched mine I felt I had to send a reply 'just in case'. I too was diagnosed as having ME. It started with the feeling of wading through slushy water and years later ended with me being on occasions in solidified mud unable to move or speak. Over the years I have seen numerous doctors in 2 countries but about 18 moths ago a doctor told me to go gluten free. It turned out I was suffering from gluten ataxia. I had never heard of it and I was very skeptical. I am not coeliac . Apparently the gluten antibodies attack my brain not my stomach. I am now on a very strict gluten free diet and I have got my life back. My brain works again and no longer feels full of mud. It is worth a try but is quite difficult as gluten is added to all sorts of food. Even very small amounts make me feel very tired. A few weeks ago I bought some low fat butter by mistake and I started to feel tired. Fat is taken out but flour added. You also have to be careful of contaminated food such as soy and corn unless it is labeled gluten free. I have found since I have gone on the diet that unlike an allergy it takes a day or too for my body to show a reaction.
I was lucky in that I was in my late 50s when my problems started. I had worked hard all my life until I succumbed to sepsis and was never the same again until now. My family however, although they did not fully understand, knew I was not a lazy person and they tried to support me. Friends however were not so good.
If gluten proves not to be your problem I hope that a cure for ME is found for you and all fellow sufferers.
Good luck