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On Your Worst Days...


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On your worst days, if you still have important responsibilities what do you do? Like work, homework, chores... I don't want to let people down, or get remarks about "sitting on the couch all day", but basically that's all I can do on those days. There's probably a day a week when I'm "useless" but I still have homework deadlines, chores, walk my neighbors dog... Sorry if I'm rambling :) So what do you do on those days?

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Short answer............ spoons. I know the link to the spoon article is somewhere on here. Too tired to find it at the moment.

For the most part though, people just aren't going to understand unless they are living with something chronic that is similar.

I think the trick is feeling ok about it yourself.

Wish I could offer something encouraging, but I haven't been able to work for 3 years. I'm losing more independance every day and I have not come to terms with a lot of it.

Most days now I can't even go out and water my garden for 10 minutes. If I don't limit myself, I pay big time. But I haven't quite convinced my brain yet that I need to limit myself.

So I usually over-do and end up a big lump of goo on the sofa.

I don't think anyone can really ever understand what another person is going through, because I think most of the time we don't understand it.

But I think if we can realize that we have limits and we are ok with that, then we would feel better about things when other people don't understand.

That seems to pertain to most things in life. Be ok with who "YOU" are not with who others want you to be.

Hope some of this makes sense, I'm tuckered out, and not able to sleep because I basically got squashed like a bug by a nurse some 1500 miles away who had the nerve to speak rudely to me and dash all my hopes of help, all this while she didn't even have all my records or any reason to even be talking to me when she did.

See even I do it. Got off the phone with her on Thursday and have been a mess since. Even though I know she was in the wrong, my brain still feels like my hopes got dashed.

Hugs to you, and I think you will get better at this as you get older. I know it sounds horrible but I think you have an advantage being young with this disease. Kids (meaning under 18 or frontal lobe not fully developed yet) seem to adapt to things easier.

There are things I'm just now figuring out are not normal and are symptoms of my condition, but I didn't realize it because I have viewed them as normal since I was little bitty. I adapted.

My Cousin was Dx'ed with POTS and was very close to death at 14 years old. She's now a Trauma nurse, had malignant thyroid cancer 2 years ago. Got married a year later and while she still deals with all the symptoms, she's able to power through most of the time.

Me, I've always been somewhat unhealthy, but I was a give 150% type of A personality and all of this is taking a major toll on how I had been living my life.

Hopefully I made some kind of sense........ hang in there...... that's all we can do.
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I would advise just getting rid of deadlines altogether. You need to build some flexibility into everything you do. That is what has worked for me. Could you share dog walking responsibilities with someone else so that he/she could take over on those occasional bad days? I had to do that with pet sitting, and just knowing I have a plan B is a real stress-reliever.

For me, looming deadlines are the WORST. Sitting on the couch is not always a bad thing. I think I spent most of 2009 on there! So give yourself a break. It's OK. When I was younger, I thought every little thing had the same priority and I HAD to handle everything. Not true. I don't believe in letting people down, but I also think it's important to tell them about your illness so that when you can't be there, it's not a surprise.

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