The uncaring health care system, or why neurologists seem so unsympathetic

I know, I know. We've all heard the stories about neurologists who treat their patients like objects of no interest, who never seem to take your pains and troubles seriously, who are in and out of the clinic room in 2.2 milliseconds.

They seem to be everywhere.

I used to get all hurt by their reaction, too - I'd leave muttering and cross at the world and hating the neuro in particular. Of course, I was going to one of the top neurologists in the country (and he knows it), and was profoundly uninteresting to him as I was still walking and talking.

In my mind I was degrading by the minute. But then, he wasn't evaluating my cognitive abilities or my depression. He was only interested in my walking. Which was something I didn't understand until I looked into MS studies and found that, at that time, that was the only assessment routinely done. (this is changing, thanks to Bart's MS save the hand focus).

But I've been ten years with this disease and I've gained some perspective. And some sympathy for the neurologists. (Not for my one from before - he truly IS an ass, and some are) I've worked with neurologists on projects, I've participated in research, I've made my own panicked calls to the clinic begging for help. What I've discovered is that they are an interesting and interested group of individuals who really do have a dismal job. Most of their patients do not get better.

Brain injuries don't tend to get better. They progress (in MS, Parkinson's, Alzheimer's, Huntington's, etc etc). Doctors (and MS Nurses) are supporting a crumbling wall, catching the biggest falling stones, having to let the smaller ones tumble.

When I was first diagnosed, I must have called my MS nurse a zillion times. I would have a symptom, it would bother me, so I'd call. "My foot is in a spasm and it hurts". "Yes, that happens," she'd say. "I'm completely numb on my right side". "Yes, that happens," she said. "My vision is all blurry!" "Yes..." And on and on.

God bless her, she never said, "Would you please stop bothering me? I have real sick people to talk to!" Because she did. The people who were paralyzed, who couldn't swallow food, who had horrible kidney infections after storing urine for weeks, people who had gone blind with optic neuritis. People who were truly suffering, as vs me, who was being BOTHERED.

Symptoms are awful, painful, exhausting, depressing. I hate it when I can't see properly. I grieve when I can't pee or pee when I shouldn't. I live in total fear of fecal incontinence. I miss being able to feel things.

https://www.mstrust.org.uk/research/research-updates/update130313-longer-lasting-sight-problems-ms-how-common-are-they

But hey, I'm also getting older. Maybe my blurring vision is due to cataracts. Maybe those aches and pains are because I've lazily sitting about instead of exercising.

Or maybe they are signs of my MS progressing. Truth is, there isn't a whole lot that can be done about that bit. Yes, medications - the disease modifying ones - and we should all be taking something like that. Vitamin D - yep. Antispasm drugs. Medical Cannabis. etc. But truth be told, other than the disease modifiers and Vitamin D, nothing will stop this train we're on. Yet.

We can adjust the pillows or ask for a warm blanket, but it's really up to us to try to make ourselves better. Rest, exercise, stretch (whatever parts you can). Eat as well as you can. Avoid salt. Enjoy life as much as possible. Rest. Laugh. Like most chronic diseases, MS is up to us to manage. We have to take responsibility for a lot of it.

And leave the neurologists time to see those who are being consumed by galloping MS, who are dealing with people dangling on the knife blade of serious progression. Leave them time to do research, to find a cure for this dratted thing.

It's terrifying to take responsibility for your "itching swelling brain," and I don't mean to discourage anyone from checking to be sure a flare-up isn't something more serious. Lately I've called when I couldn't pee, and when I lost myself for an hour and felt panicked. (also a pee issue - a urinary tract infection). Both times I got an immediate caring response that dealt with the issue. I don't call when I'm in pain, or tired, or can't read well anymore. With perspective, I know that if I stretch, drink more water, rest, move, this will likely pass, and if not, there probably isn't a solution. (yet) And I whine to my MS support group and they whine to me and we understand each other.

Life sucks. MS sucks more. So does diabetes, arthritis, cancer, etc. We aren't the only ones who deal with stuff on a daily basis. Sometimes we just have to bite the bullet and suffer in silence.

What do you think? Let me know in the comments!

Blindness revisited, or how MS can spring up and mess with you just when you thought you were coping...

Okay, MS, I've got your number. I know you will make me tired, you'll give me muscle spasms, you'll eat away at my concentration like a deranged rodent. I know some days I'll feel so good people will look at my disabled sticker and mumble and gesture. I'll spring gaily along, overcommitting and overdoing because on good days I am almost manic, trying to crowd in as much as I can.

I know other days kids will offer to help me  as I bend over my rollator. Kids. Of six and seven. And old people will hold open the door for me, offer to carry stuff, fret about me. And I'll spend half the day lying on my couch with the cat kneading me anxiously.

But Cheesus Murphy, as the excellent Kitchener restaurant would say, DON'T TAKE ME F-ing EYES!

It's bad enough about the brain. I spent years and countless thousands educating it and for what? So I can misunderstand simple knitting patterns and never find my glasses? Honestly. If I had that tuition money back I'd spend it travelling the world while I still could, going to Africa and Madagascar and New Zealand and everywhere. Of course, hindsight is 20-20, unlike current sight.

Which brings me to yesterday. I've been having problems seeing for a while now - blurring vision, glasses don't work, etc, etc. I've become used to seeing things with furry edges. I now can no longer read small things without glasses - I'd blame it on age, but it's been a sudden transition, over the past few weeks.

Yesterday, though, I had a recurrence of what sent me to the hospital the first time five years ago - a creeping in of goo from the right side of my head, covering my vision, enclosing me in a swampy impenetrable fog.
Last time, it swept across both eyes, giving me intense claustrophobia. It came, lingered, left. Came back. Sent me to the hospital. Hung around a bit more, left me again.

Last evening, it crept in again, like a migraine aura, oozing in from the upper right corner of my eye, creeping ever so slowly until half my right eye vision was obliterated.

I thought I handled it well. I mentioned it to my companion, quickly, not lingering, in case I was having a stroke and he'd have to spring into action and do something with me. Like a distant foghorn. We continued chatting and working, and I quelled my panic. As with most MS things, there is little that can be done, when it comes right down to it. If I lose my vision, that's it. There's treatment with steroids, which shortens attacks, but really doesn't help with progression. If the bottom drops out of 'er, as they say, it drops out.

It came back, thank heavens and the gods above and all that is good and right in this world.

But it leaves me a little bit more frightened, a little bit more wary, a little bit in dread.
Sometimes I forget I have a progressive disease. I adjust to my current function, think it will always be thus. And then...

And then...

It's fucking terrifying.

Numbness and by the way, will I notice sex ever again?

I'm sending out my book proposal for the MS and Intimacy book sometime next week. It's sort of funny, because right now the only intimacy I have is with my new adopted cat, who comes over and kneads me.

But all I can think of is the line from "The Truth about Cats and Dogs", where the vet is taking calls from the public on her radio show, and this guy calls in and says his cat likes to lick him and keeps doing it and he seems to have developed a rash (location unspecified). The vet, Janeane Garofalo, says, "You can love your pets, but remember you can't LOVE your pets."

Still, it's nice to be kneaded. As it were.

Meanwhile, numbness continues. If I weren't such a chicken I'd attempt cutting just to see if I'd feel that but heck, I'm in enough pain already, why go ask for more? Besides, the blood is messy.

I remember from my past intimate moments oh so very long ago that one of the fun things was that since so much of my body was numb, the spots that felt, felt EXTRA. It was like a treasure hunt. Nothing, nothing, nothing, WOW, nothing…Fun for play and exploration with a patient partner.

I also remember the summation principle -where the more I was touched, the more synapses would light up so that I could actually feel things, even if they didn't feel where they were touched, but elsewhere, so to speak. Like someone would stroke my arm and I'd feel that in my knees or something. Still felt wonderful. It was as if my partner was adding current to my fried wiring and after a certain point, the lights turned on.

Sometimes it's alarming for my partner, I think. There I am, la di da, yes this is nice, whatever. Did I shut off the stove? And then, kerplowie. Not necessarily THAT kerplowie, but fun anyway.

Anyway, since the cat, handsome as he is, does not have that effect, I'll simply have to remember what it was like for my book.

Memories are nice, too. mmmm.

"I have MS but it doesn't have me…"

What a load of malarkey.
Every time I hear this or read some cheery news about how wonderful life with MS is, I want to scream. Really loudly.
Except that I can't because I'd like to accomplish something tomorrow and extremes of emotion exhaust my fried nerves.
It's not that I'm not grateful. Honestly. If I had to have a chronic debilitating disease, MS is at least amusing. It changes and wobbles and is completely unpredictable. It makes every morning an exciting trip of "can I feel this" and "can I stand up without falling over?" and "will I need to nap half the day today?" It's exciting.
But it also sucks, absolutely.
I am tired of trying to live normally only to be hit upside the head with a flare-up or a sudden inability to do math or fatigue so intense I can't get myself out to buy milk, let alone do anything else.
I used to be a can-do type of gal, taking things on and throwing them about, accomplishing three things with my right hand while juggling another two with my left. I could multi-task. I could work with music on in the background
Now I find myself typing okay with one hand while the other lolls about and goes on strike or types at a different speed. My brain packs up and wanders off at odd moments and words go walkabout.
Most of the time I'm fine.
But I can't predict it, see. When my brain goes out on me, it's a sudden thing. I become exhausted in a moment, crash and burn.
And so I find myself limiting my activities, withdrawing from things, gradually detaching myself from positions of responsibility, backing off, choosing things that can be cancelled in a heartbeat.
So, I have MS, and yes, it does have me. By the throat.

Ah, that old devil Epstein-Barr...

http://www.msdiscovery.org/news/new_findings/6069-ebb-and-flow-ebv

Interesting article about the link between MS relapses and EBV activity. Most have EBV antigens, but people with MS have overactive and enthusiastic ones, which apparently grown and such in a MS relapse. PLease read the full article by clicking on the link - but here's the start of it as a temptation...

Epstein-Barr virus (EBV), the nearly ubiquitous herpesvirus that can cause infectious mononucleosis (or “mono”), seems inextricably tied to multiple sclerosis. But the nature of this link remains mysterious. Now, a new study published on 11 April in PLoS Pathogens (Angelini et al., 2013) shows that in patients with relapsing-remitting MS (RRMS), immune responses to active EBV cycle hand in hand with relapse, correlating the virus' activity with MS activity for the first time.

The study examined cytotoxic (CD8+) T cells—immune cells that kill infected or abnormal cells by recognizing specific antigens carried by those cells—and found an increased T cell response to lytic, or active, EBV in the bloodstream of MS patients during disease relapses. The response receded when MS quieted down. Although several different immune cells play a role in responding to viral infections, CD8+ T cells are particularly important in controlling such infections and bind directly to infected, antigen-presenting cells, meaning their response is highly specific to a single viral antigen. These results suggest that viral flare-ups may prompt MS inflammation. Moreover, this correlation could lead to a new blood-based biomarker for MS relapse and points to the possibility that the right antiviral drugs might dampen MS.

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!

Pain and MS, including those with an axe to grind

Oh legs. Legs'o'mine. Couldja leave me alone just for a leetle while?
I still don't get it - why is there so much numbness plus so much pain? Surely they should block one another out?
But no, here I cringe, legs repositioning every few minutes while I struggle to feel my fingers on the keys.
I do wish I understood this disease better. I wish anyone understood it better.
And thanks, CCSVI advocates for once again sending me an unnecessarily long and gruesome post to my CCSVI, the terrible temptations post. Every few months you send me one. It's tedious.It's advertising, pure and simple. Usually I delete the comments, made as they are by some mailing robot that spasms, like my legs, unexpectedly, and shoots out blather.
I've decided to allow this one because we are at the point of doing a study here in Canada that looks like it will be carefully designed enough to actually give us some answer, unlike all the observational studies done before. This study will assign patients with venous "obstructions" to control and experimental groups and do mock procedures on the controls. Everyone involved will be blinded as to who got what procedure. then, a year later, the groups will be switched, so everyone will end up with the procedure (important as it is an invasive experiment) and the same person can be evaluated throughout the experiment for effects. I don't know if they are following the procedures with physical therapy, my own personal thought about how the benefits are accrued from the procedure.
So in two years, we should have some hard research results.
Best thing is that the doc who is leading the study, while one of THOSE( neurologist) types, is also one of the most caring, considerate, and thoughtful neurologists I've happened to meet. I've worked with him on the Canadian MS registry project through CIHI and he is a good man, not given to self-aggrandizement, prone to listening to ideas, and open and easy to speak to. I'm hoping the centre in Montreal is going to be led by my other favourite neurologist, another gem of a doc. I'd mention their names but I don't want them to be swamped with people demanding care to the point they burn out. Nice neurologists are not common out there. tremendously smart and knowledgeable ones, yes, but pleasant and friendly, not so much.
Perhaps, unlike my numbness and pain, niceness and smartness don't normally occur together.

But in some lucky or unlucky instances, they do.

Mad Sow, Mad Cow

Some of you blog readers may wonder why I refer to the blog as "Musings of a Mad Sow". No, I don't think of myself as an angry pig, though, honestly, if I gain any more weight...
No, it's all about Denny Crane on Boston Legal. Right before I was diagnosed, I got hooked on the show, particularly enjoying when Denny would say something completely irrational and then gesture to his head and say, "Mad Cow", as if that explained everything.
http://www.youtube.com/watch?v=Zz0H-Py2rjc&feature=related

One of the signs of MS in me was the loss of the barrier between my interior and exterior monologue. You know, that inner voice that says inside your head, "This guy is a jerk", while on the outside you smile sweetly and say all the right things.
I was in management, so my straight talking almost led to me being escorted off the property
It was quite agonizing, really. I'd realize that my mouth and brain had betrayed me and try to retrieve or patch things up, but often it was simply too late. So, since MS had the right initials, I decided to try to redirect my mouth by pointing to my head and saying "Mad Sow".
Oh how I wish it would work.
For the most part, now that I am less stressed and have slept adequately, my mouth is under better control, but it's not anywhere near perfect. I am much more intolerant of foolishness than I used to be formerly and need to remind myself that being part of any bureaucracy is NOT a good plan. And yet somehow I keep ending up being part of them.
And my mad sow keeps putting her little hooflet in.
Like many of us with invisible disease, my physical symptoms are small - except for numbness and an inability to walk further than a block or so. But the mental ones are glaring, at least to me.
I was "gently reared" as they say, and I cringe at being thought rude. My dad didn't raise me that way. But wherever those lesions nestle, they've liberated my tongue and tied up my Miss Manners. Maybe I need to follow that old African tale and dig a hole and yell my true feelings into it. Maybe then the sow would be appeased.

http://www.documentingreality.com/forum/f2/post-picture-angry-pig-72235/index3.html

Somehow I doubt it.

Well, thanks so much for that...

I subscribe to an email feed from MS Answers!! http://www.msanswers.ca/Home.aspx?L=2
I love the way it is titled in my email box with two, yes two exclamation marks. Ooh, I think. I'd better go check THIS out!!!

It's a Q&A written by neurologists and MS nurses and physiotherapists and such, in response to questions sent in by patients and caregivers. I have to say, though, the answers are underwhelming and often just damn depressing.

Like today's, below. Essentially it says, yeah, life sucks. Sometimes it will suck more. We don't know if it will ever suck less again.

I dunno, but I'm getting a bit impatient. People have been studying this disease for a long long long time, and we are still left with so many "I don't know"s.AND PLEASE CCSVI trolls, go away. CCSVI isn't an answer either. It helps some, for a time. So do a lot of things. The problem is we still don't know what makes MS get worse and what can make it get better. We don't even know for certain yet what happens during MS.

I know the best and the brightest are working on this. I hope like crazy that the development of various MS registries across the world will help isolate patterns better, and am working hard to ensure the one in Canada is everything it should be.

But it's pretty discouraging when all you get is more and more of answers like this.
Especially when I'm feeling like hell myself, and wish like crazy it would all just go away.

Q : 
I have blurred vision in my left eye. I underwent steroid treatment for 2 weeks, and this relieved the pressure on my eye. My eyesight has improved slightly. Is there an average time frame for the eyesight to return to normal?
A : 
MS relapses often affect the vision in 1 eye – called an optic neuritis. It is an inflammatory attack on the optic nerve that transmits visual information to the brain.

High dose steroids are often used in attacks of optic neuritis and other MS relapses. The use of steroids shortens the duration of an MS attack, but does not improve the recovery from the attack. So, neurologists often use steroids if something important like the vision is affected, or if a person with MS is unable to function because of the attack.

Relapses can last for days to weeks to months. The recovery time for a relapse (including optic neuritis attacks) is totally variable. It could take up to 1 year to recover from the relapse. However, some people never recover completely from their attacks – sometimes the myelin (covering of the optic nerve) doesn’t repair itself as well as it was before. Then, they are left with “residual deficit” from the attack, and may never see as well out of the eye as before.

The fact that you have had some recovery is reassuring. But you may not recover your vision in that eye completely – it is still too early to tell. There are no other treatments other than time at this point to treat the optic neuritis attack.

Whoopi Goldberg and I

Um.
I've gotten sortof used to having my legs not work particularly well by the end of the day. I expect that. But I absolutely HATE those days when the muscle controlling my bladder exit decides to do its job in a sloppy way.
It's warm. I don't like the three underpant days when it is warm. Or anytime, actually. I spend my time gazing at washrooms and wishing I was a man with a longer tube. I don't feel the urge to pee, until it is too late. I don't seem to be able to empty fully without abdominal support. And I hate hate hate the thought of wearing a pad that will hold the pee like a baby's diaper. I dread the smell oozing out around the edges.

There are so many indignities with this illness. I'm okay with a lot of the things that bother others - using a cane, staggering, forgetting things, getting lost, storing the milk in the oven, losing my balance. But there are a couple of things that mess with my head.

Losing my vision terrifies me. And incontinence is just unspeakably awful.

I am supposed to drink much fluid to avoid growing more kidney stones. How? I'm supposed to be (and like to be) a sexual being - how? I want to be pretty - how, with the miasma of stale pee surrounding me?

On the good side, my dog finds me intensely interesting, and picks up any undies I discard momentarily onto the floor. I'm thinking of training him to take them to the washing machine.

Which he likes anyway, since recently, it smells a lot of pee.

I can only hope this, too, passes. Pun intended.

Driving just isn't the thrill it used to be - or maybe it's a thrill in a different way, rather

When my dad was dying of cancer, he was pretty drugged up. I remember looking at the bottles of opiates and pain killers of a variety of sorts piled on the kitchen table, and seeing him choke down handfuls of them to keep away the endless pain he suffered.  Then he'd get into his car and drive. It was terrifying but in reality, he still drove pretty well. I'm certain he was impaired, but he'd driven in the area for so many years that it was almost automatic.  The big risk was from unexpected events. I sat very quiet when he drove and tried not to be distracting...but he just didn't want to give it up.  For him it was freedom, life, a sign he still was who he had been.
 My MS is starting to affect my driving.  Part of it is the lack of familiarity of the roads around here, some of it is a leftover from an optic neuritis bout, some of it is my distractability, and I'll bet the GPS lady isn't really helping, either. I need to get a more global view of Halifax/Dartmouth rather than the tiny view in the GPS window. But it's a bit scary. And I hate the thought of losing an ability to drive.  Like my dad, it's part of my identity. I drive well, overall. I like being able to just take off if I want to. I like the idea of the convenience, the help for me and my difficulty walking, the sweetness of not having to carry piles of groceries from pillar to post.
But my life is getting limited. Tonight, for example, I was supposed to go out - but it is raining, and I know the roads will be covered with shine and glare when dark, and I can't handle all that visual input and drive at the same time.  It is totally overwhelming. And dangerous. So I'm staying in.
At least til I get my new glasses. And the ON calms down. Then we'll see. As it were.  Because I don't want to give it up.  Not yet.

Well, I'm not happy.

Yep, the Mad Sow is positively flipping. Went for a recheck of my eyes and their visual fields today and my lovely opthamologist is sending my report to my neurologist, intimating that things are not better and are, in fact, worse. Mind you, optic neuritis, from what I read, gets gradually worse over a period of days to weeks.  Then it can resolve itself, or, alternatively, result in permanent vision loss. Lovely.
Way back when I first got diagnosed with this disease, I bargained with God.  Okay, I said, I can cope with the physical things (some of them - I really wasn't hoping for incontinence and such) - but leave me my mind. So when the cognitive/emotional things took over, I was a bit miffed. Now I'm bargaining again - listen, I know I can never find my car, or add up my bills and I over tip to extremes because figuring out 15% is just too hard - but you KNOW I love reading and writing and I kindof need to be able to see for those things.
And then parts of my vision wander off. God only knows where they've gone.  The eye doc thinks it is all quite mild right now, for which I am totally grateful. However, I'm wary. And oh so tired, fatigue being the other major sign of this particular flare-up.
I'm not happy. The whole shootin' match has joined in, making my left eye unable to hold position for the test (the vision loss is in my right) and my legs are twitching to beat the band. and if I didn't have a puppy to tend to, I'd be sleeping all the time. Blah blah blah.
But enough whining.
Things can only get worse, so I may as well enjoy what I have now. I'm off to read a book. While I can.

Hope vs. despair

I've decided to get a puppy.  My family members probably think I'm mad.  After all, I had a perfectly wonderful dog, Dudley the magnificent (in the photo) who I loved to bits, and I sent him away to live with another family shortly after my diagnosis.  The thing was, I was fully prepared to be crippled and in a wheelchair after a year and didn't want to subject a poor wee doggums to the boring life that would mean.  Dudley went off to a family of five, with three cheerful little girls who promptly dressed him up in doll dresses and hats and who he went to happily, used to the pell mell of a herd of Bichons in his parental home.  My quiet little place must've bored the poor fellow, so I'm glad he's put his paws down in a place where he will be loved to excess. (and which has a fenced yard!)

I have cycled through pets, looking for companionship in a container I could manage.  I have my ferocious parrotlet, Dora, who tries to run my life and who lives a very spoiled existence indeed.  She's sweet and bossy and prefers me to any other landing surface which is adorable. But she's not quite enough.
This puppy is a vote of confidence - in me, in my ability to deal with this disease, in my ability to live alone and succeed at it. He's sweet and roly poly and all that, but his genes are smart, and I know if I work at it I can train him to be a great companion animal. He will make me walk even when I don't really feel like it, he will make me laugh also. I need this, more than I can admit. Living alone with an unpredictable chronic disease is lonely at times.  It's not that I want a person around, though, necessarily, though I like that.  Sometimes I just need a mute companion who will live and breathe around me and care for me.
I do hate the unpredictableness of this disease and wonder about taking on a new responsibility - but then I have hope that the progress will be slow, that I will have time to truly enjoy my new little buddy, exploring new places through dog's eyes. I have hope.

my brain aches....

Just had phase two of my cognitive testing for a study being done here in Ottawa - it involved one testing session, a second two weeks later, and a third in three years. It's supposed to evaluate cognitive changes in MS over time.
In some ways it was reassuring - I can still add most numbers, can think of new ways to combine sets, can tap the space bar at a certain rate. I failed utterly at the "reorganize the discs on the pegs" task and realize I need more time in kindergarten and soon before my abilities to grasp spacial solutions leave me entirely.
Remembering words, numbers, story elements - tasking! I had to close my eyes and block out all other stimulation to focus.  Wonder if I could do this during meetings at work?
Of course, got home and my blood sugar was a mere 2.8, which might have accounted for some of my fogginess.
It's difficult tracing the effects of different chronic diseases, and also I am wondering about the effects of medications and the causation of various troubles in my body. Where does one disease begin or end?  Where do the medication side effects become enough to discontinue them? What causes what?
I am so confused, and it's not just from the testing....


Curious about how you'd do?  Try going to this test site -there's a quick little test you can do that gives you a bit of an idea about some of what I did. http://www.neurology.ufl.edu/memory/cognitivetest.shtml

Pain and sensation and all that jazz

They're finding out all sorts of new things about how we actually sense pain and temperature and all of that - the link above talks about researching the cold and heat pathways (which apparently are separate and involve key proteins of some sort).  I'm having a foggy foggy day today after trying to help out at the MS Walk yesterday so took three times through the article and still don't get it quite, but feel free to explore on your own. The key thing is that the cold/hot sensors which prevent us from burning ourselves are regulated from the spinal column..
What I still puzzle about is why the patchy sensation I feel - the places where I can feel touch but the places next to them where I cannot - why I can feel coolness, but pin pricks and injuries are unnoticed. While this is helpful when I chop off different parts of my fingers whenever I make salad (added protein?), I do wonder about the variability in sensation that is part of MS. Any ideas out there?

hiraeth

I fell across this lovely Welsh word on a blog at red Room, and followed it to the linked blog above.

From what I can tell, it means a yearning for home and hearth - but more than that.

Today I spent the afternoon with my lovely ex-family-in-law.  They are alternately warm, loving, hostile, and just plain odd.

But the discussion is always intellectually stimulating and interesting. I yearn for that.  I yearn for someone to hold my hand or lean against at family events. I yearn for an extended family. I yearn for a group of people who would help me shoulder this burden I carry concealed within myself.

My growing up family is around, in their way. As in, not really!

It speaks to me that my ex-husband's family knows more about me than my own siblings. Oddly, they care more. I will always owe them my heart for this.

But with my new friends and associates, I daren't share the fears I feel, or the sorrows I feel, or the MS, as it is all so terribly boring in its infinite variability.  The endless explanations of how I can be fine one day, wrecked the next....the trying to explain the hidden disabilities...without letting people think I am totally broken and thus not worth getting to know. Even people who know me for some time don't get it - how can they, when I don't, myself?

But I yearn for that insensible, relaxed support that is there even when not asked for. Yep, hiraeth seems a likely word.  Along with anomie.

"IT IS DIFFICULT TO DEFINE HIRAETH, BUT TO ME IT MEANS THE CONSCIOUSNESS OF MAN BEING OUT OF HIS HOME AREA AND THAT WHICH IS DEAR TO HIM. THAT IS WHY IT CAN BE FELT EVEN AMONG A HOST OF PEOPLES AMIDST NATURE'S BEAUTY; LIKE A CHRISTIAN YEARNING FOR HEAVEN." --D. MARTYN LLOYD JONES