Monthly Archives: December 2015

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So this is Christmas…

It’s Christmas Day. I was looking back at my blog archives and saw that in December, 2012 I wrote 13 entries. December, 2013 there are 3 and December, 2014 there are 6. This is actually indicative of how I was doing these years.

In 2012, I had recently become housebound, every evening at around 5pm, my whole body started to hurt in earnest and my headaches were blinding, but I still had (most of) my mental faculties and no neuro symptoms anything like what I experience now.

In December 2013, I was so sick… I was in so much pain, isolated on the floor of my bedroom, hour after hour, and feeling suicidal.

Last year, I was in a reactionary whirlwind. Christmas eve, my tongue swelled up and that night was truly one of the worst I’ve experienced.

This year, though… so far… things are better (she says tentatively, knocking on wood). This is only my third post this month, but it’s more to do with my brain not working very well than with being bedbound with sickness. I feel so much more stable this year. I haven’t had one of my bad nocturnal reactions in eight months, I think. I’m handling my immunoglobulin infusions well. I can eat virtually anything. I crash regularly and feel horrific, but bounce back quicker.

Tuesday, Wednesday and yesterday were good days. God, I love being able to say that. I had three good days. My sister, her boyfriend and their dog arrived yesterday and, because I’m such a nightowl these days, I was able to function from 2pm until 2am, retiring to my bedroom a few times to rest. I had no headache! Let me say that again: I HAD NO HEADACHE! Lights and noise weren’t bothering me. I was tired, but no cognitive symptoms. It was a Christmas miracle. This morning I feel hungover, my head aches, my eyes are sore and I’m very tired and dragging. But it’s still early (1pm 😉) and I have faith that this evening I will be okay. I had one wish for this Christmas: no pain and no fear –and I think, besides dull aches and low-level silent pleading, that wish is coming true.

Gratitude is shooting out of my fingers and toes and the ends of my hair like I swallowed George Bailey’s moon.

Update: I forgot to publish this yesterday. It’s now almost midnight on the night of the 26th. This week came down on me like a pile of bricks today. I had a hypoglycemic episode, hit a wall, felt very nauseous, was having trouble talking, went to bed weak, trembling, shaking with chills. BUT– here I am six hours later and, besides being drained, I’m doing okay, able to finish watching It’s a Wonderful Life with my husband, crying at the end like we do every year.

All in all, this Christmas was a success. Great company, great food, great gifts, great-full. In fact, without a doubt, this Christmas was the best I’ve had health-wise since 2010.

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The Good

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Yesterday was bad. Like I said, the last three months have been a roller coaster of really bad days punctuated, thankfully, by some respite. Last week on Friday, I was almost as sick as I was yesterday, lying in the same bed, looking out the same window, feeling the same despondency. But I woke up on Saturday feeling so much better. In my healthy life, I couldn’t have believed how quickly an illness could change. You really can be talking about ending it all one day and laughing with your dogs the next. It makes it seem a bit girl-who-cried-wolf, but it’s not, I promise. The bad is that bad and the good, although not that good, is so extremely, completely, acutely appreciated.

So last Saturday… It was freezing, but blue skies and sunny. I’d been inside for weeks and I was feeling very “I’m out of bed! Hello? I feel better! Anyone there? Quick, someone take me somewhere!” My husband was out with friends, my mother and aunt were eating Italian food in a restaurant in Dublin, my best friend was having dinner in our friends’ house in Dublin, my sister was on the town in Paris… I told myself, You were so sick yesterday, you just need to rest , but everyone was doing fun things and I wanted to, too, dammit! So I loaded my dogs into the car and drove (for the first time in months) to the dog park. We only stayed half an hour and I was on alert the whole time, knowing that if they got into an altercation, I would destroy myself breaking it up, but… I did it. And chatted to TWO people. It was great. Here’s evidence:

The next day… I still felt okay! So we went to my favourite place, the cemetery. I rode my scooter and my husband cycled my his bike and the boys ran and ran with big grins on their faces. My nose was running and my fingers were bloodless and numb, but it was so sorely needed. Here are a selection of cemetery shots from the last four months:

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Bowie in August.

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Riley in September.

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Bowie in September.

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Bowie in October.

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Boys in October.

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SQUIRREL!!

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Bowie in November.

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Bowie in November at dusk.

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Riley in November at dusk (he usually moves too fast for me to get a photo of him).

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Bowie in December.

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Where’s Daddy going?

I couldn’t leave this blog festering in the bad of yesterday. My friends are so caring and feel so deeply — thank you to those that have left me messages of support. It means a great deal that you can still offer compassion after all this time.

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I Found My Worst Nightmare

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On this day four years ago, Facebook reminds me, we were shopping for a recliner. I’d been sick one month. I’d seen my endocrinologist, assuming that the low-grade fevers, violent chills and drenching, shaking, sleep-murdering night sweats were something to do with my post-ablative hypothyroidism. I didn’t go to my GP for another few weeks, only after every Google search of my symptoms came up with malaria and I started to wonder, what if?

I’ll never forget the feeling I had that day. It was a Saturday and I’d gotten up early and gone to a “Pure Barre” exercise class — my knee-jerk response to not feeling well was to exercise more (ignorant and hopeful during that first year, I booked three yoga and exercises courses and was never able to go once). I remember leaving that class and calling my husband in tears. My body responded in such a violent way, I could barely walk. I sat in my car for half an hour before I could push in the clutch.

I was in a daze when we were looking for a recliner later on the same day, shuffling around the stores, feeling weak and fearful of whatever the hell was happening to me. I remember acting like a caustic recluse when the salespeople wanted to engage me in their spiels, giving my husband that look that said “get this person away from me.” I joked about my outfit in this photo, but in reality I couldn’t shower or change before we went shopping — it was too much energy — and that was such an alien thing for me that I had an overwhelming feeling of doom. In truth, as much as I hoped it was my thyroid, I knew as soon as this illness started that it was something bigger.

Today I feel worse than I did that day. There was no pain then, no sore throat, no daily headaches, no brain problems, no muscle wasting. I still had a job and friends, I still drove, and ran around in the dog park and laughed every day. Sometimes I can’t believe it. Every day for over four years? Isn’t it meant to plateau? Am I not meant to acclimate and get used to this? Find a quality life somehow? I don’t hope to feel good again… not even average… I just hope to eventually get to a place where the good outweighs the bad and makes me feel like it’s worth continuing this fight.

P.S. To all my friends who have been doing this longer than I have, you inspire me to continue the fight. ❤