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Thursday, 2 November 2017

Loneliness and M.E

Hi,

The subject of loneliness is a hot topic at the moment. MPs are getting involved, many local cafes in Portsmouth are holding 'Loneliness dining' for people who need support and some company. I have, fairly recently, met a lovely lady called Cat who is a social entrepreneur. She works hard for the benefit of our local community. She is passionate about helping the elderly in terms of loneliness, inclusion and transport. Her new business is called Time for Help (her Twitter handle is @TimeforHelp1) and it is a very valuable scheme in the community. Good luck with it Cat! Anyway, talking to her about inclusion and loneliness made me think about how M.E affects us in terms of loneliness.

I wrote a blog a few years ago on a similar subject but I want to revisit this topic - 2015 blog

When we are laid on our beds, desperately clawing back energy and trying to calm our overstimulated brains and bodies, who do you think is keeping us company? I may live with my parents, but they don't sit silently in my room, keeping me company during my 'payback'. They are

getting on with their usual daily lives. They allow me to be as independent as I want to be in terms of my illness. Sometimes, it is to the point of stubbornness, I will not allow this illness to tear away
every shred of independence that I once flourished in. So I choose to struggle instead of asking for help. Many sufferers don't have the choice to be stubborn. I am well aware of that and consider myself to be exceptionally lucky. Every day, I leave their company to go into what sometimes feels like solitary confinement because my health forces me to. It's enforced loneliness and isolation. I'm a naturally sociable person and being alone is against my natural instincts. My body seems to know when it needs to shut down though so I have to be guided by that instinct.

The slightest noise can hamper my 'recharge' time. Sometimes I am able to watch TV while I rest but not all the time. I often lay silent with my eyes closed just 'being'. If I have flat-lined then I can't talk or move easily. This doesn't allow for any human contact. Sometimes I have to lay there for a few hours. IT'S BORING and makes me feel incredibly lonely. Especially when my arms and legs are feeling so heavy and numb that I can't feel them. I yearn for the 'good old days' when I used to be out 3-4 times a week, dancing the night away with friends or going to friend's houses for a catch up that lasts until the early hours. Those days are a distant memory.

I know you can feel empty in a crowded room so having company isn't really the issue. I feel lonely being the only ME sufferer in my group of friends. As much as my circle of friends now know a lot about M.E, only sufferers know the true nature of the illness. My feeling of loneliness flares when I get messages from friends asking me out for a coffee or when I see their posts on social media. Events that, back in 2006, I would have been the first to sign up to. 

Our M.E community is fantastic for many things but doesn't really help with my feelings of loneliness. Everyone on Foggy's Twitter feed are loving and supportive but when it comes down to it, it's just BED and me.

Love

Sally
 (and Foggy OBVIOUSLY)  xxxxx

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