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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. ❤

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Update… Aborted. Again.

I’ve been trying to write an update for so long. It’s been 5 months since my last one. There’s been so much that I wanted to document, that it started to feel like a Herculean task to catch up and my symptoms have been such a rollercoaster, that I never seem to find an opportunity. When I have some respite, I cook, bathe, deal with insurance and appointments, tackle laundry, play with my dogs, sort through finances etc. Aaannd… I just hit a wall. Just like that. As I typed, I could feel my brain clogging up. I picture all the little ATP molecules grimacing, gasping and dragging their feet like the characters at the end of Stephen King’s story, The Long Walk, dragging themselves along until collapse is inevitable. It’s a shocking feeling. Mentally, I was really clear for about an hour this morning. Felt like I could write. Dreamed up grand plans for my day (make granola! call a family member! blog post!). I answered a few emails, talked to my husband a bit and then wrote this… And it’s gone.

My neurological symptoms are horrific. “Brain fog” is the best of it. I’d take lack of concentration, not being able to find words, memory problems any day over what I’ve been experiencing this year. It feels like physically–physiologically–my brain grinds to a halt. My eyelids get heavy, my vision gets blurry, my ears roar, I start slurring. As I’m writing this, it’s getting worse and there’s no pushing through. My body feels okay, my stiffness, weakness and pain levels are manageable this morning, but I can’t push through this neuro stuff. Even if my body feels capable of going to the park, my brain insists on being in bed with ear plugs and eye shades. I can’t even watch dull tv or listen to a meditation. It’s incredibly frustrating and quite alarming. And, in a clinical way, I am fascinated by the trajectory of my symptoms over the past four years.

Year 1 was horrific viral, malarial, drenching sweat, nighttime hell and constant chills. That ended for the most part in Year 2 and became predominately “nightly flu” and pain, pain and more pain. Year 3 was the best of times and the worst of times: a bedbound, suicidal winter (when I finally got the permanent ME/CFS sore throat) turned into a much more stable spring and summer after my pain eased up. Year 4 started in a deep, reactive crash and became the year of crippling neurological symptoms. Year 5 (which started at the beginning of this month) so far is all over the place. My main focus is to work on the symptoms that have been with me throughout all of these years: sleep dysfunction, headaches, hypotension and infections. Plus, social contact would be good.

I have to power down now. The long-awaited update will come soon, I hope. I have so much to say.

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Rag and Bone Shop of the Heart

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I walked into my doctor’s office and stood staring, gobsmacked, at this book on the table. Did someone publish my blog? How did my doctor find it? I’ve used his line for so long, I almost forgot it belonged to W.B. Yeats. Of all the lines of all the poems on all the books in all the doctors’ offices in the world, mine had this one on her desk? Kinda spooky. I’m taking it as a good omen. I’m taking it as a sign that I should stick with her even though she doesn’t accept insurance and I feel like I’ll go bankrupt with long-term care. Signs from the universe go a long way in keeping me hopeful.

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When I was a child–somewhere around 10 or 11–I used to carry a book of Yeats poetry around with me. I have a memory of sitting upstairs at the back of a bus (Dublin buses were double-deckers) nose stuck in this 1965 edition (my name is written in shaky kid letters on the edge of the pages, the way you do when you bend the book one way to get the first name and then the other way to get the last name), but mostly I know I did this because, over the years, my mother has fondly mentioned this odd obsession. Yeats is still one of my favourite poets and, when I started this blog, I took one of the lines that always stayed with me (because I was a dark young thing), the last line of this poem:

The Circus Animals’ Desertion
BY WILLIAM BUTLER YEATS

I sought a theme and sought for it in vain,
I sought it daily for six weeks or so.
Maybe at last being but a broken man
I must be satisfied with my heart, although
Winter and summer till old age began
My circus animals were all on show,
Those stilted boys, that burnished chariot,
Lion and woman and the Lord knows what.
II
What can I but enumerate old themes,
First that sea-rider Oisin led by the nose
Through three enchanted islands, allegorical dreams,
Vain gaiety, vain battle, vain repose,
Themes of the embittered heart, or so it seems,
That might adorn old songs or courtly shows;
But what cared I that set him on to ride,
I, starved for the bosom of his fairy bride.
And then a counter-truth filled out its play,
`The Countess Cathleen’ was the name I gave it,
She, pity-crazed, had given her soul away
But masterful Heaven had intervened to save it.
I thought my dear must her own soul destroy
So did fanaticism and hate enslave it,
And this brought forth a dream and soon enough
This dream itself had all my thought and love.
And when the Fool and Blind Man stole the bread
Cuchulain fought the ungovernable sea;
Heart mysteries there, and yet when all is said
It was the dream itself enchanted me:
Character isolated by a deed
To engross the present and dominate memory.
Players and painted stage took all my love
And not those things that they were emblems of.
III
Those masterful images because complete
Grew in pure mind but out of what began?
A mound of refuse or the sweepings of a street,
Old kettles, old bottles, and a broken can,
Old iron, old bones, old rags, that raving slut
Who keeps the till. Now that my ladder’s gone
I must lie down where all the ladders start
In the foul rag and bone shop of the heart.