A mini essay on very severe/severe ME and the

festive season by Ruth Braham

Right now a little sad as Xmas approaches and realising yet another year when I can't tolerate anyone but dad in my room. Carers still hard. And my lovely aunt's I have to refuse- still - and can't do phone calls with them or my housebound gran. Who Ire- fused when she was able to visit and now its too late. I do not have any friends that I've seen in 5 years. Haven't chatted on the phone/Skype to a friend in maybe 3 ½. I don't have the energy to explain what goes on with my symp- toms with visits but it's unbearable. I daily refuse necessary care because it's torture to have someone near. For some Neuro/psychological reason I can't explain dad(in small controlled doses). He often/sometimes helps me feel calmer/ nervous system less on high alert. Like my cat. It doesn't work with other people. They need to be so familiar that I'm totally relaxed. Or my symptoms go nuts. And I haven't been well enough in years to spend enough time with anyone else so that's true. And it's totally beyond my control. The same is true for phone or text. If I subconsciously feel on any level I need to communi- cate clearly, the cognitive effort makes me crash/mute. I'm sure this is true for other severe/very severe people. But it's makes me feel so guilty and sad and so hard to explain when you'll allow one person frequently and another once a year. How do you properly convey there's genuine affection? How do you stay in someone's life and have them in yours when a text a month is what you can handle?
Stonebird Stonebird
I think the loss of company/diminished  relationships is something that never feels ok. Sometimes it's a quiet grief. At times like Christmas, when everyone is focused on special times with loved ones, it's loud. It's hard (even for atheists like me). I spent an hour typing this. I hope this helps others in the same situation feel less guilt. Less lonely. Because it's not our fault. We are loving and we are loved and we can hope for better times Sending all my love and support to other people with ME and know how ever infrequently we can communicate I feel your love and support and it keeps me going xxxxc

A mini essay on very

severe/severe ME and

the festive season by

Ruth Braham

Right now a little sad as Xmas ap- proaches and realising yet another year when I can't tolerate anyone but dad in my room. Carers still hard. And my lovely aunt's I have to refuse- still - and can't do phone calls with them or my housebound gran. Who Irefused when she was able to visit and now its too late. I do not have any friends that I've seen in 5 years. Haven't chatted on the phone/Skype to a friend in maybe 3 ½. I don't have the energy to explain what goes on with my symptoms with visits but it's unbearable. I daily refuse necessary care be- cause it's torture to have someone near. For some Neuro/psychological reason I can't explain dad(in small controlled doses). He often/sometimes helps me feel calmer/ nervous system less on high alert. Like my cat. It doesn't work with other people. They need to be so familiar that I'm to- tally relaxed. Or my symptoms go nuts. And I haven't been well enough in years to spend enough time with anyone else so that's true. And it's totally beyond my control. The same is true for phone or text. If I subconsciously feel on any level I need to communicate clearly, the cognitive effort makes me crash/mute. I'm sure this is true for other severe/very severe people. But it's makes me feel so guilty and sad and so hard to explain when you'll allow one person frequently and an- other once a year. How do you properly convey there's genuine affection? How do you stay in someone's life and have them in yours when a text a month is what you can handle?
Stonebird Stonebird
“How do you stay in someone's life and have them in yours when a text a month is what you can handle?
I think the loss of company/diminished  relationships is something that never feels ok. Sometimes it's a quiet grief. At times like Christmas, when everyone is focused on special times with loved ones, it's loud. It's hard (even for atheists like me). I spent an hour typing this. I hope this helps others in the same situation feel less guilt. Less lonely. Because it's not our fault. We are loving and we are loved and we can hope for better times Sending all my love and support to other people with ME and know how ever infrequently we can communicate I feel your love and support and it keeps me going xxxxc