time and happyness

What people don’t see when you live with a chronic illness

What’s it like when you go out out – if you do go out out? Is there a lot of preparation and organisation involved?

I have friends who don’t have EDS or chronic illness. They fill their weekends with activities from morning till night – doing multiple things in one day. And they don’t seem that tired.
When I have a big Saturday night out, here’s what it can take:

– early night Friday
– only seeing one client on Saturday morning as opposed to my normal three or four
– Bed rest from 2-5pm Saturday
– Taxi to and from London – can’t do public transport as well
– Full day of rest on Sunday so I can be at work again on Monday

Going out requires preparation and forward planning for many of us. I know I can only do one big event a weekend. Staying up past my bedtime was huge. It seems silly that one late night can really take it out of you – but that is reality for many people.

We may see people with chronic illness on social media smiling and looking like they are having a great time (and I hope they are), but we don’t know what it took to make that happen. People can’t see what is going on under the skin or behind the scenes. They won’t know the sacrifice made to get to one event. They won’t understand how much it means to us to be able to keep to our plans and go out. The amount of times I have let people down at the last minute because I just could not face going out. True friends stick around and understand. I’ve lost a few along the way and that’s OK. I need people who really understand because I don’t have the time or energy to feel guilty about it. That’s just another energy drainer.

So, I’m just curious – what planning and prep is involved for you behind the scenes?

  • Von Jones
    Posted at 11:44h, 19 April Reply

    I can very rarely go out at all, as I need to lie in back of car to get there then lie on a level sunlounger/bed once there, and destination must be only a few paces from back of car to sunbed. But I must also prepare for a long distance visitor I cant really cancel (if a local friend calls I can say if am not well enough) and only the few can come who understand I can only chat a short time then need a couple of hours rest at least while they do something else.
    Either way I have to rest for days prior, cancelling all other visits, then recover for a week or much more afterwards depending how I was when they came.
    #severeME #MEcfs #MyalgicEncephalomyelitis

    • Jeannie Di Bon
      Posted at 10:32h, 25 April Reply

      Thank you for sharing your story. Sorry to hear you are struggling with this condition.

  • Amy Bobbitt
    Posted at 12:58h, 19 April Reply

    I also have to have a day before and a day after to rest or I will be down for days. Cancelling use to crush me however now I have no regrets saying no to things I know will not add to my mental and social health. It may be a tad bit selfish but my wellness will be better for it.

    • Jeannie Di Bon
      Posted at 10:32h, 25 April Reply

      Thank you Amy for sharing your experience.

  • Maria Georgiou
    Posted at 10:34h, 27 April Reply

    I’m so happy to have found you Jeannie, because I ‘m finally freed from my guilts. I have always been a little different from the other people around me, getting tired very easily and needing a rest every now and then. My preparation for a night out looks more or less like the one you describe. Clearing my agenda from other activities, resting before and after the event is a standard procedure for me, too. I used to feel like I was a lazy person, but now I realize this is just my nature and I don’t force things, whenever possible! Thank you for helping so many people out there to be heard!

    • Jeannie Di Bon
      Posted at 14:43h, 28 April Reply

      Thank you so much for your reply. I am so glad to hear this article resonated for you. Thank you for sharing your experience.

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