Monday 18 February 2013

Chronically ill? Emotions we experience - LONELINESS

Hey guys, today's post is going to be about loneliness. Being chronically ill is very lonely, wouldn't you agree? So here we gooo....

I can't begin to tell you in words about the aloneness and loneliness those of us who are fairly house bond feel. It sucks.

Loneliness and aloneness are different. We feel both. No matter how many others you may know with the same illness you still are very much alone in your own body. All illnesses are like this. It really does help to be part of a support group of some sort though.

Then there is the loneliness. We're isolated, unable to go to social 'do's' without paying a major price with our health, for some life risking. After a while friends fall away as you can no longer do things with them. Losing friends is hard but you just have to remember that you are better off without them. True friends will stick by you, no matter what.

Some get sick of hearing about all the symptoms (i moan a LOT. am really trying to stop but its hard!) or frustrated with not being able to help. Most public meeting places are filled with things unsafe or difficult for some spoonies.

Most people with CFS/ME/CFIDS or FM don't have the stamina to participate witg a lot of things such as shopping and going to the cinema can be far too loud for some. Some people use a wheelchair so need to know that the place they are going to, has disabled toilets and ramps etc.

Over time they find themselves more and more apart from the rest of the outside world. Days on end without a change in scenery can be so lonely. You get stir crazy but don't even have energy to stir! You may crave to have a friend come visit only to find that when they come you get so exhausted and wiped out from trying to behave 'healthy' that you wish they'd cut the visit short. (Who agrees with me?! Acting 'healthy/okay' is exhausting!)

But...You fear friends and family will take that wrong and you don't want to hurt them either.

The times that I feel most alone are mostly during the night when I'm in a lot of pain and I'm maybe sitting downstairs, alone in the dark, crying. The pain is overwhelming and everyone is asleep, expect me. I can't sleep and insomnia is lonely.

Oh, this spoonie business is complicated and hard work. Being a teenager with a illness is really hard and I feel like I'm missing out on a lot of the stuff that others my age are doing. It makes me feel lonely because I don't really have many friends and those that I do have, are on twitter etc (which makes me sound so sad!).

Anyway, I better wrap up for today. Thanks for reading, see you all soon!



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