Scarfolk Council: The 'Inoc-uous' vaccination machine

Scarfolk Council: The 'Inoc-uous' vaccination machine: Scarfolk primary school installed one of these Inoc-uous devices in the basement in 1974. The entire school's pupils queued up for their...

Maybe this would help with those pesky injections?

Androgenic hormones could help treat multiple sclerosis, study suggests

Androgenic hormones could help treat multiple sclerosis, study suggests

Great. Here I've been fighting an ongoing battle with facial hair, and now it seems it's a good thing to have rampant testosterone. Might explain the relatively quiescent progress of my MS, my muscles that are unfemininely large, and my ZZTop beard.
Sigh.
Back to my nightmare of being old and unshaven in a home...though I figure I could at least be cool....

ZZ Top Under Pressure

Impaired social cognition in multiple sclerosis

http://www.ncbi.nlm.nih.gov/pubmed/23315621

Oh goodie.

As if it weren't enough that our bodies turn on us and make us dependent, and our minds lose things and start storing socks in the freezer and ice cream in the hall cupboard, it appears that we lose the ability to interact appropriately with the people around us, often the very people we need to keep us from falling apart.

This study looked at how people with MS responded to a film of four people sitting around a dinner table having a discussion. At various points in the movie, it is stopped and the patient is asked to identify the emotion being expressed by the person at the table.

Apparently we don't do so well at that.

Like autistic people...we seem to lose the ability to read people's faces appropriately, which might account for a few mixed experiences I've had lately.

Of course, this study also gives us an excuse for misunderstanding people. We can just trot out the statement, "Remember - we MSers fail the MASC! You have to tell me what you are thinking!"

Finally, a reason to have real discussions, instead of being expected to read minds.

Huzzah!

"Sticks! Sticks!"

I just came back from five days in Havana Cuba. I'd gone down with my kids with the idea that they could help me muddle through the city, push me in a wheelchair if needs be, do all that stuff.
They were immeasurably helpful, and I'm grateful they were with me, given the potent mix of fatigue, sun and rum that was coursing through my veins (with a few prescribed medications that were labelled firmly 'do not take with alcohol!') Suffice to say my liver is having a pleasant little detox right now.

One of the best things I did was bring my Nordik Poles with me. I used them for balance and to give me a little push at the end of the day when walking was too hard. Or in the middle of the day, ditto.
My bearded boys, one son's gorgeous red headed girlfriend, and little ol' grey-haired me with my sticks made quite an entourage as we walked through the old town. Handsome Cuban men called out to us - "Hey, Gringa! Sticks!" as I wandered by.
I think they thought I was on some sort of mad fitness regime, taking ski poles through Havana.
Still, they worked very well, and I recommend them highly.
The wheelchair less so - the cobblestone and damaged roads in Havana would likely have vibrated my fillings out as I went by, or put my spinal column into shock.
My sticks and I, though, we made it.

Then I came home and slept for a week. But at least I'd seen Havana.

Being a bad patient

I've never been what anyone would call "cooperative". I'm far too mulish and convinced of my own intelligence to go along with anything without some resistance.

But around the MS thing, I do try and be a good patient.

Because I worked in primary care, and I know well how bad patients get treated. Non-compliant patients get treated like scum. No one asks if the patient had good reasons for not taking the prescribed medication - or if anyone ever asked him. No one likes the patient who misses appointments (in primary care in Ontario, three such misses without good explanation meant you got dropped off the doctor's list. But who determines if the explanation is good?)

Patients who argue with their doctors get branded with the "personality disorder" moniker and then get pushed to the bottom of the list.

So, as a nurse, I've always tried to be endlessly polite and then do my hollering AFTER I got off the phone. I take my medications (mostly) like a good girl, and try to be responsible about self-care.

Today I nearly lost it, though.

I was booked for a pelvic ultrasound for this morning at 9:50. They told me to show up 15 minutes early, but I'm wise and didn't. I drank water on the way so I wouldn't be frantic with the need to pee. I'm not pregnant but I suspect looming fibroids and my MS has tinkered with my bladder sensation and control.

I walked through the maze of the local children's hospital, where I sat and waited for my number to be called. It was. At that point I was able to register. I went back and sat down. And waited.

I was surrounded by pregnant women, alternately breathing and crossing their legs. If you've never been pregnant, you can't possibly appreciate what it's like to wait for a pelvic ultrasound. You are nervous, want to see the baby, and the same baby is tapdancing on your filled bladder.

With my middle child, I was so full by the time they took me, they told me I had placenta previa - when really I had too much pee in my bladder.

So I was sending soothing and understanding glances at the pregnant woman while gradually getting more and more uncomfortable myself, as the HOURS passed.

Eventually  - a full hour + after my appointment and with three more people to go before I could be seen - I couldn't bear it any longer. I went to the desk and politely told the lass that I had to go (in both senses of the word). She whispered she'd try to rebook me. Much was made of the fact that I'd already registered - perhaps that gets fed back to some assessment?

Anyway, my rebooked appointment is at the end of APRIL. In four months. Surely to God they had an opening before then. Not that I'm in any hurry to recreate this experience.

You can't tell me that wasn't punishment for me leaving.

And now I'm mad.

On the perils of accepting charity

Job accepting charityWilliam Blake

I am in a frumious mood. My own fault. I went to a charity MS event today. Not a fundraiser - a "social" event. One of the Anglican churches here has been holding lunches for people with MS for the past 40 years - an astonishing and kind commitment but ever so slightly weird. 

Why? Because they don't speak to any of the attendees and in fact treat us all as if we are mentally feeble. I had one man practically walk with me to the washroom to ensure I could understand the Men and Women signs appropriately. Argh. 

A church pianist sort played hearty Christmas music on the piano to add context but she played too loudly for anyone to speak with each other, especially MSers with weak voices, sort of like you'd do at a senior's luncheon where everyone is senile or very hard of hearing and sits quietly and drools through the concert. She did a good job but had a different songbook than any of us so we always ended the carols in different places. 

They kindly made food suitable for people without teeth and brought around broken up bits of fruitcake that were passed to us in crumbly small amounts. And they poured us 1/2 cups of coffee so we wouldn't run the risk of spilling it or burning ourselves.

Santa came, and with him a man dressed as an elf, who gave a 15 minute long speech, crying all the way through, about how he loved wearing the elf suit for Christmas Daddies and etc and how "all your happy faces" made it worthwhile. The happy faces got rather stiff during his emotional session, which I guess he does whenever he wears "the suit". He does make a good elf, if a somewhat bipolar one.

We'd taken a ride from friends so we were hopelessly trapped there for the entire event.

There WAS a wonderful man with a fantastic voice who ensured everyone sang Christmas Carols, so that was fun. I suspect he is the parishioner who pushes this thing - they said at the beginning that the usual people didn't want to host it so the men's club did. 

And so all the men stood together over in the corner staring at us while the women toiled in the kitchen, as usual with church things...And everybody brought $5 gifts to share. I was hoping for chocolate but instead got a shiny necklace and two hand towels in pink that said "Love always persists". With bunnies and carrots embroidered on them (not by hand).

All in all it made me CRINGE with horror at the thought of being in a senior's home where I would be pushed out to one of these festive events in a wheelchair and forced to endure and smile through all of this SHIT every few days until Christmas. I swear to god I am taking myself out before that happens, or I'll have to check in with a weapon. Or a few.

God, I pity the poor. It occurred to me that this is what usually happens at charity dinners, where all the good folk, hardworking and with their hearts firmly in the right place, cook food and serve it while watching the poor/old/feeble/sick and hoping they are appropriately grateful. Egad. And for the first time I saw the hell that ongoing disability could be - endlessly going to these things for a "day out" until I perish in the attempt to gulp back another shortbread cookie made with rancid butter. I'd rather get a cash gift and spend it on liquor and sin, with no one watching to see if I choked.

I really don't think I have the intestinal fortitude to be a charity case. How DO they do it?

Exhausted from trying to be nice and failing miserably. 

Inspector Dreyfuss

Well, so, here I am in agonies with trigeminal neuralgia, going around grabbing at my head like John Cleese in the Fawlty Towers episode about the Germans and unable to think without shafts of pain shooting through my head, so I go to see my excellent doctor and she prescribes Gabapentin for me.



Cool. It stops the agonizing pain.


But now my left eye is twitching like Inspector Dreyfuss in the Pink Panther movies and I feel vaguely piratical as my eye closes down after twitching. And today, I developed nystagmus in my right eye, so my left eyelid twitches and my right eyeball twitches.

I'm beginning to look vaguely possessed.