Rants and Silver Linings

Reacting to My Reactions

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TILTed Mom in the only photo of me during a reaction – a mild one.  Turns out, documenting the moment is the last thing on anyone’s mind when I am in full reaction.

I had some extended family visit over the holidays and a familiar pattern played itself out again. Given any 10 day stretch of time, there will be at least one 12-24 hour period when I don’t feel well, when I don’t feel like my normal self. Usually it’s a mild to moderate reaction to some exposure, singular or additive, of some kind. This is my current norm; I wish the bad days were less frequent but it’s better than it was 2 years ago and much better than it was 20 years ago when it was chronic. My husband and kids are used to this, it is truly part of our family rhythm. Sometimes we even plan for it when the exposures are ones that I know about in advance and will do anyways. I try to schedule those for Fridays when I can count on a Worthless Mom Saturday since my husband will be around to help. Every time I feel sick, I hate it and beat myself up about it and get a little mad at the world. But once I physically feel better, so does my heart and mind so I am able to get back to my normal life.
My point is, that while I wish and work towards not having bad days at all, I try to accept that they are part of my life, as do the people I live with. But some family members who do not live with me have a hard time accepting it. They hate to see me feeling bad, whether it is pain or brain fog or exhaustion or breathing problems. Anything that is not the normal me, upsets them. They worry and ask what they can do to make it better. They bemoan the fact that this happened to me and wish they could give me their strength. They glower and and pout and in general makes it feel like a very big deal even though I have lived with it for 20 years. They are completely justified in their feelings. Someone they love feels bad and was derailed by something out of their control and will never have some of the things that they counted on for me. They can’t fix it. They don’t really understand it. They feel helpless and angry and very sad. I get all of that. We should all be that enraged at the system that has marginalized this illness. But their reaction does not help me in the moment and I certainly can’t help them when I am already messed up.
What I usually need from people is some space and time to recover. Some sympathy for my pain, but also confidence that I will feel better soon and trust that I am doing the best I can do navigate the whole situation. I’ve got a check list for myself for when the brain fog gets bad. Once I’ve done all these rescue treatments, then its time to wait and be kind to myself. The only concrete thing anyone can do is bring me good food because the nausea makes me avoid the kitchen right when I need good nutrition. The worst thing anyone can do is require emotional exchange from me. I cannot soothe someone else’s fears when I am sick. And I resent being put in that position. I need my safe home to also be an emotionally safe place for me to feel sick. Because its going to happen and there is nothing worse than trying to hide my pain.
I have tried to explain this to certain family members but it’s like it’s new every time and they get that upset every time they sees me ill. I dread the visits because I know I will feel pressured to be fine when they are here and I physically can’t pull that off for very long. This last visit went as expected and the whole scenario played itself out again. It will happen again and probably every time that they stay with me. I cannot seem to change it. But I am trying to let it inform my own parenting in a lemons to lemonade type move. I try not to let my children’s pain, physical or emotional, effect me so much that they have to deal with my concern. I did well with that last week when my daughter was ill and I was worried over whether it was just a typical virus or if she was relapsing into a bad GI problem again. Together we calmly charted symptoms til we knew what we were dealing with. I screwed it up this week when my son had some major hormonal and academic  stress. He could see my concern and anxiety when instead he needed to see my confidence that he would figure it out and that I would be there to help.
It’s hard to react and hard to react well for the reactor. As I write this I realize how much I dislike the word react. I would always prefer to plan.  Life doesn’t work that way and so it seems that the best we can do is plan on how we will react while keeping other’s feelings in mind.  Admittedly, a plan is not always going to help but some of the time it will so in my next post I will share my plan for reacting, an oxymoron if I ever heard one.

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Full family support.

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4 thoughts on “Reacting to My Reactions

  1. I have empathy for your situation. I wish I had a solution to offer you. I have tried being honest when a family member asks how I am — by being specific about an MCS reaction in their presence. This usually results in hearing through the grapevine that I talk about my MCS issues too much. If I respond that I am fine and when I go home to recover for a few days in private — then family members decide that I am cured and are confused why I am not attending family functions that are not fragrance free. I hope you have a day filled with fresh air.

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