@ScarletClarke 

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ScarletClarke

Peer support

Hi guys, I am the only one in my whole family and friendship group to be diagnosed with a condition that is long term/degenerative, and I'm really struggling with support from them. I don't have any physical/physiological symptoms as of yet (thank God) but I struggle a lot with fatigue. I am sleepy all of the time, and then I will have sudden bouts of insomnia where I don't sleep for nearly 3 days and then I crash again. I find people are getting very annoyed with me when I agree to plans and have to cancel at the last minute because I am so tired that I'm sleeping for 16 hours of the day. I am aware it isn't their fault that they don't understand, because why would they? But at the same time it's very difficult when I am trying to explain how I feel and they just brush it off as if it isn't important or something I can "get over". Has anyone else struggled with this?
@niteowl

Hi 👋 I know the feeling with fatigue it floors me, make plans and then have to cancel cos my body throws a hissy fit and shuts down and I crash out ...... I have just woken up 🙄 slept about 7ish Signed off work at the moment and by afternoon I crash today I kept going but it hit me when I got home Good friends stick around and others walk away cos they can’t handle it and don’t know what to say when all you want is some support...... Here is great to have a natter and vent your frustration with people that get it ..... Xx

@Maribel_Silva_Horton

Yeah I understand the fatigue too. It gets really bad with heat. Yeah I'm the only one in my family at hospice and it's hard for them to understand. I have lost so many friends because of this. My best friend right now is my husband what time am I in he's a really nice guy hope this helps