Chronic illness: best laid plans

 

the best laid plans of mice and men often go awry

Planning and cancelling with chronic illness

It is summer. There are loads of things to do in the summer. We get offers to go out and about all the time.

And I turn down every time. Or when it comes to the day, I can’t.

There is just issues with functioning with vertigo that gets substantially worse when sitting or standing, and much better with a lot of rest in the day laying down. I have this sense of anxiety about being in the car for long distances and getting severely worse when out and about, but with nothing I can do about it.

I rather feel like I am letting people down. And perhaps they do not realize the energy I am expending by existing right now. But I feel the friendships I have are rather one-sided. They put in a lot more effort than I do. Or can. It isn’t a good feeling at all because I value and appreciate all my friends. As a real sturdy introvert, I don’t exactly make friends easily. I make acquaintances easily. But not friends.

Our neighbors have invited us out in a couple of weeks to go on a camping/quading trip. Quading is impossible for me but my spouse loves it. But I am hesitant. The 3 to 4 hour drive will trigger the severer symptoms. And just being upright and walking about will do the same thing, especially when I cannot just lay down for a few hours. I have a couple hours in the afternoon and a couple hours in the evening of rest to help with the worsening symptoms of doing literally anything at all. At home. But going somewhere else will mean those rest times would be difficult. They have a camper so I could lay down if needed. But with the incessant dizziness and cognitive problems just sitting up for too long makes me spacy, out of sorts, and I have a difficult time with what is going on around me. I would not be good company. And likely the nausea would be a serious problem as well. When I do not rest enough that gets extreme even with Zofran.

But, Isolation

But on the other side of the coin, isolation is brutal. Not being able to do everyday things for most of the day is very isolating. And going out to the mountains and into nature is something I love. It makes me content. It relaxes me. Any trip like that I have problems with chronic pain and migraines. Vacations are… effort. But the benefits are there as well. So I am all for nudging my limits a bit on holidays if the cost is worth it, and I pay attention to pacing. With a complete understanding of my limits as well.

Exceeding my limits to stuff a lot of things into a vacation can result in symptom severity long after I get home. And as is, I always used to give myself a couple of recovery days before back to work.

So, we are mellow when on vacation. With a lot of rest breaks and not very much we choose to do in the day. But it will increase severity, because of the effort needed to do simple things. Now though with the vertigo added on top and it is so very sensitive to everything I attempt to do we agreed this year not to go to my uncle’s cabin for a holiday. It is too much energy to just exist right now without flaring up the severe symptoms. I want to go there. And I want to go chill with my neighbors as well. But the cost and consequences of doing anything at all mean my limit is now epically low.

I sort of want to ‘test the waters’ and see how well I function. Just to see if I can do it. But I do that at home as is. Do things to nudge my limits, and then have to rest for hours to recover. And that is extremely mild things. I fear it would be too much muchness if I went to the mountains.

And there is this level of anxiety that comes with vertigo. This sense of not wanting to go out of the house and do things because of the severity of the consequences. And worrying those consequences will happen shortly after I get to my destination. With just chronic pain, when I feel that sort of anxiety, I do the social event anyway. I don’t want to naysay myself out of having a life. And I deal with the resulting pain levels. Because socializing is important for well-being, and mental and emotional health. Even with a real sturdy introvert that totally has only indoor hobbies and can entertain myself really well. We all need human contact. And we want to socialize.

Fact is, we do a cost-benefit analysis and see if it is fear that is driving up to cancel or symptom severity.

  • You have to ask yourself if fear of doing things is impacting you to choose not to do things.
  • It is important we nudge our limits. Test the waters, by doing things.
  • Or acknowledge it is anxiety and fear of doing the event not so much current pain but future pain. I always recommend carrying a bag with all your as needed and needed medications, and OTC things like Imodium and Gravol. If we feel prepared for the potential consequences it is easier to want to go do things.
  • But if it is symptoms severity that is the issue, then it is best to sit that one out.

 

Of course, when your functionality has suffered it is hard to even know your limits. So they need to be nudged to see where your new level of functioning actually is.

See other similar posts

Fear: To do, or not to do

Best laid plans of chronic illness

Socializing: The one thing that helped me

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6 comments

  1. What did you decide about the trip? Could you rest in a zero gravity chair when you get there? Or is living vicariously through pictures and stories from your husband a better option?

    Liked by 1 person

  2. Vertigo sucks! And I know the anxiety you mean, I want to plan things and have a life but I quadruple guess anything I put on the calendar. Then the stress of the anxiety makes the vertigo worse and the vertigo makes the stress worse which makes the anxiety worse – the awesome merry-go-round of chronic illness.

    Ultimately, I think pushing yourself to do those things is a benefit, as long as you remember to rest and follow the healthy routines you do at home. That’s the trick, though, hey? Whatever you decide, as an introvert you can make it be awesome. 💕

    Liked by 1 person

  3. I think we can ‘all’ do what we really want to do as long as we do it in our time/pain/energy frame.
    The key is educating others to understand ‘their’ limitation of knowledge of our condition. How do we inform and enlighten the perfectly healthy to understand?

    Liked by 1 person

    1. Very true. I have been getting a lot of ‘you have to get out more’ sort of advice. It is true, but it isn’t easy with the low functionality lately.

      Like

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