Best laid plans of chronic illness

A friend calls you up to go to a concert, or to a dinner party or to go drinking? A family member invites you out of a family social gathering?

Do you go? Do you bail out on it because you fear you will be struck down with a migraine anyway? Or you know the pain will be worse if you do? Or it could cause a flare? Do you hope you won’t be and on the day of decide one way or the other whether you can go or not? Do I go out for drinks with fellow staff members after work? Do I do that ‘volunteer’ work at work for charity/festive events?

Should I? Shouldn’t I? The question we face for any number of things every single day.

I am limited

If we refuse to make a plan or go out:

If we constantly refuse it is not good for us, to be honest. It increases that sense of isolation. And socialization (Yes, even in introverts) helps with our moods. If we keep refusing, well, eventually people stop asking. And that is how you become a hermit like me. So for the friends you love you might want to find ways that work for you to hold onto them.

I will also feel guilty that I did, but not if it was a choice that I literally could not do. Guilt can be a factor if it was something important and I wanted to go, but could not. But there is no guilt if I say no to a heavy metal concert. I love heavy metal but I can no longer go to a concert like that. Not without a wicked migraine being triggered.

If we agree to the plans:

We may feel like crap when the day arrives and have to cancel. Or we may feel pretty bad, but tough through it for our friends, family and loved ones. Or maybe the pain is moderate and we enjoy ourselves. Or maybe we enjoy ourselves but have to leave early.  We have to be prepared though.

For a migraine have to bring an abortive and a rescue. And something for nausea. Sunglasses of course.

For other pain, we have to be aware of our pain and fatigue. This means limits and moderation.

And what we choose to go to should be things that are not going to overly assault us with lights and sounds. I make choices based on how far do I have to travel because it will not be fun getting home with a wicked migraine. What are the plans for? Because if it is something I can do; dinner, cards, game night, movie (sometimes) then I am more inclined to say yes.

Now there should be no guilt involved in this process. What it really is our own little cost vs benefit analysis. How much is this going to cost me in pain to what sort of benefit there is to be gained?


Cost: Loud, flashing lights, screaming crowds, smoke =High cost in pain.
Benefit: No benefit due to the inability to focus on music. The music itself hurts. 

Playing cards: 

Cost: light in room, 4 people= minimal cost
Benefit: Having a good time with company, laughing, enjoyment, socializing with friends. Relatively short duration for pain and fatigue. I can leave when I want to. 

We have our limitations but we are aware of them. We should use that as a guideline to accepting plans, spontaneous plans or making plans. If we can’t do A, we could do B. The idea is not to do anything at all, but to find things within your limitations to do with friends, family and loved ones or choose things within those limits you get invited to.

I was a real hermit and most of my friends had drifted off from the whole saying no to every invite, then there were none. So starting to socialize again is difficult and slow… for an introvert. I began by going out for coffee with my mother regularly. We then went to my spouse’s Christmas parties. There we mingled and met people. We had a few BBQs. Some of them we play cards with regularly. A few helped us with our fence building and flooring. It took some time but we slowly collected a few friends again. And now we have to maintain them. Which means making plans I can agree to. Declining offers for things I know I cannot do.

When I realized we were hermits and that this then affected my spouse. I decided to just not say no to things. No matter how tired I was. As long as the pain was within its tolerable range I would say yes. This enabled us to explore options and meet people. Just sort of pushing myself a little to get the gain I was looking for.

Most often now when I make a plan I say ‘I should’. I made it. I’m doing it. I prepare by making sure my pain levels are managed. My migraine is managed as well. And I bring things with me if they suddenly become unmanaged. And yes, sometimes it gets very bad and I have to leave early. But not all the time. And more than once it was a 9 pain day and I could not go out at all so I had to skip those ones. Pain does not stop me from going out because the pain would be there anyway and as long as what I am doing is something just moderate, then I’ll be fine to cope with it. The pain is always going to be there, it should not stop me from seeing friends. It does, of course, at the very high pain levels, but there is nothing I can do about that. As long as your friends and family grasp why that is, it is a non-issue.

Bad days happen and we cannot, absolutely, Cannot meet every plan we make to socialize with friends and family. We want to, but when the pain gets up into the 8 or 9 range we are useless to socialize with. I am dull as dirt. Barely there as a human being, to be honest. And the migraine makes me dumb as a doornail. I don’t laugh as much because I only half-ass even listen to what is going on around me. I am no one’s idea of fun. Just sort of sit there wishing I was not in pain. So there will always be days pain flares and epic migraines will cause disruptions to plans. And we can’t feel guilty about it. It is what it is.

We should remember that our social welling is also important just as our mental and emotional wellbeing. And having the enjoyment of friends and family does, in fact, help us cope. Gets us out of our head-space for a bit anyway.I personally only socialize once a month or a couple of months or so, but it is enough to feel less isolated. Once a month works for me because too often and that would mean too many cancellations. Once a month though? Most of the time I can handle tolerating a few hours if I am prepared.

Just remember best-laid plans with chronic illness often go awry. And the people that understand this fact will be the ones we continue to socialize with.

Also in chronic illness:

Chronic illness: When life expands. When life shrinks

The unpredictability and downturns of chronic illness

Denial and chronic illness

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