So, I am hijacking Foggy’s blog again while he is having a whale of a time in Hawaii.
In this blog post I want to address the issue of loneliness felt by M.E. sufferers. Before anyone gets their knickers in a twist, I am well aware that absolutely any human can experience feelings of loneliness, even with friends in a crowded room. However, I want to talk specifically about M.E. and how the illness can cause intense feelings of loneliness and isolation.
The nature of the illness makes loneliness exceptionally common and understandable. Sometimes it is as if you are trapped in your own body and are screaming to get out. Personally, I regularly feel lonely, usually because my body, for whatever reason, isn’t allowing me to behave how I would like. Perhaps I can’t go and see friends or, have managed to go out but haven’t the energy to join in, but also because the people I am with don’t understand my condition. Distrust and disbelief makes me go in on myself and withdraw from the situation; this just adds to loneliness.
Another aspect to this is that when sufferers are laying in bed with ‘payback’ and are unable to move, think, understand or speak easily who do you think is there keeping them company? I am assuming, mild sufferers like myself will be upstairs in bedrooms and have to phone downstairs to speak to someone, as we don’t have the energy to pop downstairs where the rest of the household are. I often spend 2-3 hours a night alone in my room not talking to anyone due to the need to be horizontal and quiet. To be a severe sufferer with this level of isolation and loneliness, all day, every day, is incomprehensible to me. I am well aware that I am ‘lucky’ to only have mild symptoms. I send my love, support and best wishes to the many severe sufferers around the globe.
Luckily, I enjoy my own company. However, the loneliness creeps in when my brain is desperate to be active but my body says ‘no way Jose!’ and I am forced into isolation. This is why I became so close and attached to Patch. Not only was he empathetic to my symptoms but he was excellent company without having to be a burden to family at home. I have lost count of the times he has given me ‘that look’ and tried to lick away my tears.
If you are a non sufferer please try and put yourself in my, and other sufferers, shoes. We can’t ‘snap out of it’ or change our situation. It is a very desperate place to be and that is why I am running this campaign.
Sal xxx (and Foggy of course)