And this is why we don’t make plans

It always amazes me that despite being sick my whole life, I still have a very healthy image in my head of what should be the norm. I inevitably make the mistake of thinking that how well I’m doing is measured by what I’m doing. That if I go out without the wheelchair, I’m doing better and if I can fill my day with doing things rather than distraction and rest, I’m improving. The sad truth is that it doesn’t work that way. I don’t have a condition that’s truly progressive, but as quite a few of my symptoms are triggered or aggravated by what I do, pushing myself too hard is not a good thing. Doing more than I should is not improvement, it’s asking for trouble.

I’ve had a pretty bad week. Allergies are affecting my breathing, we’ve had a few warmer days and for reasons I won’t elaborate on, I lost a fair amount of blood a few days ago and although I insisted that I can recover at home just as well as anywhere else, if not better, the snowball effect was set in motion and had to run its course. Less blood means lower blood volume and as I already suffer from chronic hypovolemia, my heart has been beating much faster than it should and getting tired under the strain, the beating became rather erratic. SVT isn’t dangerous as such, but the palpitations, shortness of breath, chest pain and dizzy spells make it hard to think or function and I get a little anxious. I try to relax, I find distractions, I do more yoga, the kind you can do slowly whilst lying down, and I breathe deliberately and intentionally, slow, deep breaths, but the feeling that my brain is not getting enough oxygen never quite goes away. I used to swim a lot and my coach used to make us swim a 50 meter lap with one, maybe two breaths. As an asthmatic, I cheated, but even with five or six breaths, once you have been under water for a while, your brain begins to gently nudge that you need to breathe. The nudge becomes insistence and then it becomes hysterical screaming. When my oxygen levels get a little lower than they should and my resting pulse is over 135, it’s just like that. I’m back in that pool near the end of the lap and my heart is pounding, blood is rushing through my veins and the sound is so loud I can’t hear anything else and my brain is insisting with panic and great persistence that I need more air. Moar! I try to ignore the panicked plea, but when it goes on for hours and hours and I can’t sleep and haven’t eaten, it slowly chews away at my patience.

I haven’t been sleeping well. I was awake all of Thursday night, I couldn’t nap on Friday, I caught a few interrupted hours on Friday night and mercifully, thankfully with a nod to sheer exhaustion, I fell asleep in the early morning hours of Sunday and managed six hours of interrupted sleep; but sleep is sleep and although I woke up zombie like, its better than no sleep at all. I have been careful about at least trying to get plenty of rest. Rest is necessary and stave off the more serious stuff. Last night, after another pretty bad day, I spent most of the evening crying in Chris’ lap and when a friend came home from work and said hi on chat, I lamented the fact that I hadn’t even done the daily heroic and was feeling rather useless. She hadn’t either and so in a moment of impulse, I thought screw sensibility and got out of bed, got Chris out of bed and downstairs we went for a quick run. It was such a nice distraction that although Chris went to bed straight after, I stayed and played and talked through quite a few more runs. It was a good decision. There’s an undeniable comfort in hanging out with people that know you, accept you and is simply there to listen, laugh ndd an endless supply of virtual hugs and kisses and bubble gum. I forgot that my heart couldn’t keep up with what my body needed from it, that my brain was mushy and I finally got off the emotional roller coaster that I didn’t want to be on in the first place.

Padding downstairs dizzily for caffeine comfort this morning, it still felt like the right decision. I got coffee, logged into WoW, tinkered with my gear and on impulse jumped into a VH pug. Somewhere between Xevozz’s the arcane barrage, arcane volley and ethereal sphere, I started feeling funny and then my memory gets sketchy. I remember flashing, I remember that feeling of almost connecting the dots, but not quite, yet enough to realize that something very bad is happening. I had a seizure. It wasn’t until I started recovering afterward that the obvious pieces fell into place. I’ve been more unwell than usual, I’ve not been sleeping, I’ve not been eating, I’ve been stressed, I’ve not been drinking enough fluids to not be dehydrated and flashing of any kind doesn’t really help. I had inadvertently wracked up the whole list of things that lower my seizure threshold and trigger migraine headaches. I had a seizure, I had a migraine aura and within an hour I had the mother of all migraine headaches splitting my skull open.

Today is our wedding anniversary. I called Chris at work and when I begin a conversation with “Don’t panic, I’m fine” he’s already panicking. So much has gone so very wrong this week and it hit me harder than I ever thought it would, but I never for a moment thought that I wouldn’t get through this week like I’ve gotten through all the other bad weeks. Chris comes home early from work, not for the romantic evening we’ve planned, but to make sure I don’t need to go to hospital now. Life has its ups and downs and this week has had more downs than ups, but in the greater scheme of things, dates do not matter. Marriages aren’t built on anniversaries. We had made fluid plans for this evening: If I’m well, we’ll go out; if I’m just okay, we’ll order in and watch a romantic comedy or have a picnic in the garden and if I’m very tired, we’ll just move the picnic onto the hammock or eat in bed and if something bad happens, we’ll just move the whole anniversary thing to another day. Looks like it’s the last one on the list, but that’s okay because Chris comes home and holds me and I hold onto him and he says ‘everything is okay now, I’m here’ and we snuggle in bed and he reads to me in a whisper voice and soon the cats jumps up and goes to sleep stretched across both of us. We didn’t need plans or a fancy dinner and it doesn’t matter that I never made it into the black dress. I’m just here, in this moment and it’s more than enough.


6 thoughts on “And this is why we don’t make plans

  1. indeed .. its just a number and the fact that you recognize this date as yours should be more than enough, its like you said, you dont need to do all that fancy stuff to feel love, the fact that you already do all those things and spend time together, no matter the occasion/situation.

    Here’s to many more for you :)

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