In the 2 years that I have been ill, I have experienced a fair bit of loneliness.  I want to be clear I don’t mean to sound ungrateful, I am far from ungrateful.  I am thankful I have a very supportive family and great friends who have helped me along the way.  My wife and my dog are with me and I am content in the knowledge that they are nearby. 

But every so often when I am alone when I would like to see or talk to a family member or a friend the reality hits me that I can’t and it crushes me.  Outside these walls, my friends and family are working, or catching up with their interests, or socialising and having fun, and I am stuck.  Stuck in my chair or my bed.  Stuck unable to read or concentrate on a TV show.  Stuck desperate to escape this torment, to outrun the fatigue, to tear my skin off and shake the burning and stabbing pains out of it, to scrape the aching from my bones and joints.

It is the helplessness that really gets me.  I feel powerless to do anything: I can’t go out, I can’t call someone, there is no one to come and visit, even if there was I am in no state to have a visitor.  The upshot is that I feel utterly pathetic and even more alone.  I remember visiting people through my work, people who clearly didn’t have much human contact.    People who want to tell you their life-story when you just want the briefest of details.  Over-disclosers we’d call them.  I understand your position now and I’m sorry.  I’m sorry for how you must have felt and I’m sorry I didn’t show you much patience.  

Helplessness is dangerous too.  In my experience people who feel trapped are prone to making rash decisions, their mood deteriorates and their perception of reality and their self-worth changes for the worse. 

They say social media is a great thing.  It has made keeping in touch so easy.  And yet for someone who has ME/CFS, someone for whom time has stood still, watching other peoples’ lives move on is so, so hard.  I hate myself for being jealous of others, but I am.  I don’t want people to stop enjoying themselves or trying new experiences, I just want to be with you too.  I want to be part of it.  I want my life back.

You know loneliness can be devastating.  Yet you don’t have to be a superhero or high up in politics to fix it.  This is a problem we can easily fix.  I guess this is a plea to all those who can.  If you know someone who is housebound or doesn’t get out much please, please get in touch with them.  You have no idea what a boost it will be for them, you will more than likely brighten their whole day just for them to know they are not forgotten.  Don’t be offended if you don’t get a reply straight away when you feel distraught to know you are valued can cause strong emotions, in a good way, but these emotions are tiring and need processing.  Rest assured, though, that even just a quick text, a short message, or the briefest of visits can make the toughest of days more bearable, can bring joy to those who suffer, and that is a gift one shouldn’t be hesitant in giving.

Author: Jonathan

Hello! My name is Jonathan. I have ME/CFS and have done so for around 2 years. I live in rural Aberdeenshire with my wife and our dog Trudy. I am originally from the Outer Hebrides where most of my family still live. After school I left home to study psychology at The University of St. Andrews and moved to Aberdeen after graduation. In 2004 I joined what was Grampian Police, now Police Scotland, where I have enjoyed a varied career in a number of operational, community and partnership based roles including a 2 year sabbatical working in residential child care. Prior to developing ME/CFS I was a keen cyclist, runner, climber and skier. I love the outdoors, always have since I was a child, and I try to spend as much time outside as I can. I have never blogged before so this is a whole new experience for me. I hope you will enjoy the journey with me!

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