Oh Goodie!

Less than a week to my bilateral total knee replacement and I'm reviewing the inter webs about information...
And I see this one...apparently my sex life will get better post-op. Hmm. Now I just need a partner...;-)

http://tarlowknee.com/category/total-knee-replacement/page/4/

Dr. Tarlow comments:  Common knowledge says successful joint replacement surgery improves life function and patient well being.  Less often addressed but of importance to patients is the effect joint replacement has on sexual intimacy.  Fortunately, good news is seen in this aspect of patient life after orthopedic surgical intervention.  Read on.

From the Daily Mail -U.K.

From  a report from  Rathod P, Deshmukh A, Ranawat A, Rodriguez J presented  at the 2013 Annual Meeting of the American Academy of Orthopaedic Surgeons (AAOS).

 Painful osteoarthritis of the hip or knee can reduce mobility and make normal activities like walking, exercising and yes, even sexual intimacy, a challenge.  New research evaluating the influence of total hip and total knee replacement on the physical and psychological aspects of sexuality found a majority of patients experienced reduced function before surgery. Fortunately, significant improvements were reported after total hip or total knee replacement surgery. 

Before surgery, 147 patients answered questionnaires for the study. Of them, 67% reported physical problems with sexual activity such as pain and stiffness, and a whopping 91% reported experiencing psychological issues, related to sexual self-image and general well- being.

Post-surgery, 116 participants responded to questionnaires and reported significant improvements in both physical and psychological issues impacting their sexual function. Ninety percent (90%) of patients reported improved overall sexual function after total hip or total knee replacement, with total hip replacement patients experiencing a higher rate of improvement.

The post-operative improvements reported were:

• Improvement in general well-being: 84%
• improved sexual self-image: 55%
• improvement in libido: 42%
• increased intercourse frequency: 41%
• increased intercourse duration: 36%

People considering total knee or total hip replacement surgery should talk to their surgeons about their current level of activity, and what they can expect for their post-surgery return to activity – in and out of the bedroom.

Stages of change...

You know, I just get used to this MS thing when my body throws me another curveball. For the past several years I thought my major difficulty walking was caused by my MS. Nope. Knees crusty with arthritis. 

So oh well, I thought. Let's change them up. Get fresh knew ones. Seemed reasonable.

And then I met my excellent and caring anesthesiologist, who described for me what I could be given  to perhaps help me with the expected excruciating pain.

Excruciating pain.

Yep. According to him, knee surgery is probably one of the very worst surgery one could have, and the MS gave him pause about how my pain could be controlled, given the nerve confusion and conduction problems.

I think he was trying to talk me out of having them both done at once. Instead he made me more convinced I needed to get it over with as the thought of going through this twice sounded horrific.

For pain relief' according to plan:

- advance Baclofen to reduce spasms, increase dose significantly for the first few days.

- advance acetaminophen, antiinflammatories, and morphine

- two nerve block shots in the back of my knees

- two ongoing drip nerve blocks for the front of my knees - down low so as not to affect the motor nerves but to cover the sensory ones. My legs are all of 24 inches long in entirety. Given the need for a long incision for the surgery itself, I figure these will end up somewhere near my groin.

- patient controlled analgesia for general pain.

And that's just for the first 48 hours. I'm thinking I should do a liver purge now just to get my cells working.

Plus I'm thinking he wasn't kidding about the pain. 

It's a bit panic inducing, though the doc was so caring and sweet. As is my surgeon. They must see something in my face because they look at me and say, intently, "we'll take good care of you."

It is amazing how much a kind look, a hand on the shoulder, a voice of concern and a gentle explanation go towards easing my fears.

Two weeks from today...new knees...excruciating pain. Ooooh.

 I am taking my aching knees for a walk today to keep them toned.and doing my knee exercises like a mad thing.

And hoping the MS induced numbness hangs around for the next several weeks...

Kneeless in Nova Scotia

I'm in a state.
Of what, I'm not sure.
In a little more than 3 weeks, I'm off to have both knees replaced, at the same time.
To say I am gradually becoming awash with anxiety would be true. To say I am dreading pain would be fair, too. To say I am wondering how this will affect my MS would be right on the money.

I've survived surgery before - each time I had a C-section I was up and about quickly and healed up well. I had a baby to look after, too. In one case, three kids to look after. And somehow I managed it, largely thanks to the helpful intervention of my wonderful mother-in-law, who tended to everything while I healed. (true, sometimes she tended too well - I don't ever remember finishing a cup of tea, but at least I had the first inch or so before the cup was washed)

This time, I am even more fortunate. I have a circle of friends who are willing to help out, two grown sons who are pitching in, lovely things, a new apartment designed for such things.

I also have a spine that is damaged by MS, an epidural space that didn't work on my last delivery because there was some damage there, according to the anesthesiologist, and yes, spasmy legs and arms and bum muscles and general bodily pain from this disease that can only get worse with aggravation.

I've read a couple of studies on people with MS having knee replacements. They weren't encouraging. One small study reported acute hamstring spasms that required further surgery. Another reported over-mobility of the knee joint - which made the surgery a failure.

Three people, total. Anecdotal. Not significant. Enough to create a mini-cloud of worry.

Like my friend Tim, who watches airplane crashes endlessly before flying, I've been glued to graphic surgery videos of knee replacement. I can feel my legs being sawed and hammered. It looks positively brutal.

I panic, exercise the joints as they've taught me. Should lose weight but feel the urge for chocolate so strongly as my anxiety rises. So I bend my knees and do exercises as I chomp down milk chocolate. And sip single malt. I'm trying to be smart but parts of my brain have their own ideas.

So why do it? Well, I can't walk without pain. This could give me walking back. I thought the pain was due to MS until I saw my X-rays. My knees are crunchy. With replacement, I COULD get another several years of walking back, dealing only with the MS.

With better knees, I can exercise more. This is good for all sorts of reasons. General health, anxiety, weight management, control of MS.

So wish me luck. I'm taking a literal leap of faith here. With any luck, I'll soon be able to leap better.

New Challenges, or isn't it lovely Fampyra takes away some of my numbness RIGHT now when I need it?

Ah, knees.
Those humble, poorly designed bits of skeletal architecture that support our weight and allow us to move and somehow have kind of adapted to us being upright.
Those multi-part pieces of garbage that give out on us with annoying regularity...

Apparently mine wouldn't get much on the Antiques Road Show. I can hear the announcer now, "Well, there has been some damage, as you can see here, and here, and over there, and here, and that WILL affect their value. In fact, they're not worth as much as you paid for them."
"Oh, they were free? Well, that doesn't change my point...you may want to keep them for sentimental value..."

No thanks. Sentimental value isn't much when the thing you are talking about causes pain and mobility limitations.

For a while I was in denial about my knees. I assumed my leg spasms were due to MS, which they are, but what I didn't realize was that my legs were spasming in response to the screaming pain from severely arthritic knees that wasn't making it to my brain thanks to the MS.

Sortof a win/lose situation.

But then I started taking Fampyra.
Hooray! Sensation is creeping back.
Damn. Sensation is creeping back.

So, whereas before I could leap about with gay abandon as long as my MS would let me, now every movement is accompanied by a chorus of groans and winces.
My knees have awoken.
I am forming new wrinkles to cross out my smile lines.

A sucker for punishment, I trotted off to see the orthopaedic surgeon about a replacement. He looked at my X-rays and asked which one to replace, as both are entirely wrecked. So I'm doing them both, at the same time. I figure my docs oughta get a paper out of this, given the combo of MS and bilateral knee replacement. Can't be that common.

It's a bit of bravado, I've got to admit. I am always best running at the high hurdles. Little ones bore me and I can't get excited about them. But this one is significantly terrifying enough that I am actually going to prepare for it, do my exercises, try to lose weight, etc, etc.

Oh yeah, and take my lifelong wish train trip across the country before I go under the knife. Just in case.

OOH, me aching bum...

I'm beginning to hate my "trunk". You know, the place where you put the "junk".
It seems to be giving me a fair bit of trouble. Started with back of bum spasms when I walk. Not pleasant, but I got used to them. Then the front of my thighs started in on the game. Cool, I thought. At least I'm balanced.

Then my inner thighs. Now that was weird feeling. They kicked in at a meeting and I had to rub them secretly under the table which of course made it look like I was distracting myself in an impure manner (as George Carlin would say).
So I just pushed on them and tried to persuade them to let go. They still haven't. They won't let me put my legs together, so I sit like a 50 cent tramp. As my grandmother would probably say. Good thing I wear pants. Good thing they don't have holes in unusual places. Good thing I'm not working anymore.


Now we're going for nerve pain up and down the super secret place. It's hard to feel elegant when you are hissing through your teeth to avoid screaming. Hot needles. Long hot needles.

It's MOST annoying as otherwise I'm completely numb "down there". It seems unfair. Either give me it all or take it all, right? Half and half, when I only get the bad half is nasty.

Was bad enough yesterday to surf on serious drugs. Fortunately today the needles are only occasional. I'll be sitting, completely comfy, when one shoots up my unusual location.
I'm frightening the dog.

Oh blessed drugs!

One of the things about this foolish, changeable disease, is that you have to do so much self-management, sometimes in spite of your doctor. One can always hope to be on the same wavelength, but occasionally the focus differs and you have to think it through yourself. My neuro told me that the Baclofen I'd been prescribed by another doc for spasticity wasn't really needed in my case since I didn't have any spasticity.
Well, true, then I just had twitches, not spasms. So he gave me drugs for twitches.  Fair enough.

But I've been unable to walk more than a block without pain for weeks now. Some of it is no doubt due to the kidney stone thing, but even once it was gone, my legs weren't working together.  One foot spasmed regularly. Pain and I became close personal friends.  And as someone whose big kidney stone was found halfway down the ureter (and I was in minor discomfort), when I feel pain, it should tell me something.
So today I decided to try a baclofen.  And you know what? It worked. I just came back from my first fast walk in weeks. My legs worked together with my knees and I could hoof it as I like to, fast enough to satisfy even the rampant poodle.  My hips swung along like they are supposed to, easily, cheerfully, enjoying the movement. It was f-ing amazing.
Motion is so wonderful to experience when you've lost it for awhile. There is something so mystical about the way a body works together, the way the hip swings in the socket, the way the shoulders move within the framework of muscles, the support and flexibility of the spine.  I am almost giddy with the joy of it all. Those of you, who can move easily - go for a walk. It's a true gift.

Malingering and MS

Okay, you've all heard it.  About how MSers fake their symptoms so they can be accepted into trials.  About how neurologists have to judge the story and see if they believe it before treating. About how MSers demand more more more all the time and insist on treatment even when their symptoms don't warrant it.
No?
Well I have heard this from three sources in the past two weeks (two live, one on Memorex), and I don't know quite how to react.
Burning down my neuro's office seems extreme.
Yelling in the privacy of my own home seems ineffectual.
Slapping the person who implied I was malingering is chargable.
So I'm settling for the middle road and writing here.

Okay, I'm mad.
Hmm.

So, you get told you have a chronic incurable debilitating disease. You are told you have to take expensive medications for the rest of your life or risk crippling disability. You are told you have lesions and holes in your brain.

Some of us wallow in self-pity.  I did that, for about a year. I figure that's pretty normal. But once I bonded on the idea of a walk in tub, I was fine, really. For the most part, though I can't help grieving some of my losses.
("of all the things I've lost, I miss my mind the most...")

It's hard to be cheerful all the time when you have muscle spasms and numbness and forget where anything is and can no longer do simple math without thinking really hard and have to leave work because few employers would put up with a 2 hour nap every afternoon. But wotthehell, Archie, toujours gai, as Mehitabel the cat would say.

So, if you're me, you give your head a shake and start exercising. You exercise every day.  You ignore the fact that this means the rest of the day is a writeoff because you know that if you don't exercise, your balance gets worse, your muscles atrophy, you feel more pain, you get fat(ter). Exercising means that your muscles are capable of walking the dog.

Exercising means that you still can walk, even if some days it takes more concentration than it really should and your feet cramp up afterwards and you notice that that old left leg just isn't swinging forward the way it should.  But you plunge on and you do your best because you are fighting the disability, damn it, with all the energy you've got.
BUT you're still numb, you can't see properly, you can kiss sexuality goodbye, you still walk like a drunk when tired and a certain amount of your zest for living vanishes along with your energy.

And then you interact with your doctor.
And he treats you like those things, those smallish things that exist and ruin your life, those smallish things that shine most bright because of all your hard work stretching and moving and exercising even when you are beyond tired and your positive thinking and sense of humour about not being able to feel your lips or having them tango dance every time you go to the dentist - those things that still bother you - he treats them as if they are nothing, as if you should be grateful, as if you are wasting his time.

And in a way, you are.  There's nothing that can be done for you in any case. Well, except more drugs. Which cost more money. And have side effects and dubious efficacy.

And then there's the support you need to maintain your status as disabled, that status that means you get an income even though you are too tired to work for one, even though, as an employee, you'd be pretty damn unreliable. And that he holds over your head like a sword of Damocles, in his might, swinging it to and fro, to and fro.

It's no wonder people with MS are telling the tales of their worst days, not their best. Minimize your symptoms at your peril, lest your funding be removed. Minimize your pain, or forget those nights when you couldn't sleep because of spasms, and you get scorn.

It's no wonder people hop on the comet trails of every possible treatment that doesn't involve their neurologist, even if the hope is as ephemeral as those trails, just to avoid that scorn, that feeling of being examined and found wanting as a person and a patient. I'm sure half of the benefits found through CCSVI treatment come from someone listening to the patient, and showing some caring.

I've lived with ongoing pain most of my life.  It's from a variety of causes, probably not all MS, but I've lived with it and dealt with it and moved on. I resent like hell being told I malinger, when I ignored the symptoms of MS until I went blind one day (thank heavens, for a short time only) so that I wouldn't bother the medical establishment. I ignored the symptoms of a kidney stone and coped on my own with it so I wouldn't have to go to emergency. If I am saying now that I CAN'T DO IT, then by god, I CAN'T DO IT.

I am reminded of my favourite patient when I was teaching nurses.  They were going to give her a bath and they had placed her in a bath chair to raise her up and into a huge tub. She was stark naked, up about five feet in the air, and she was hollering, "Come here!  Come here so I can kick you!"

I feel as powerless as she was, and just about as mad.

Walking is hard!

I feel a bit like those awful Barbie dolls that used to be sold some years ago that would say, when squeezed, "Math is hard!" I can empathize with Barbie, with her spastic always pointed feet and her knees that bend improperly, her fixed hands. My body is a bit that way today, as the flare-up I've been having for the past week adds to the foolhardiness of walking all over the place when visiting my son - it was a lovely tour of Waterloo but I foolishly left my cane at home and had to buy a new one halfway through the day.
So we wandered on, and I got such a good feeling about wonderful Waterloo - I finally saw it as my son sees it - accessible, filled with easy transit connections, charming shops and restaurants, pleasant people, pretty sights. At least until my hip started giving out.
Today, I have a puppy who has spent the weekend in a kennel and returns expecting fun fun fun and a body that wants sleep sleep sleep, preferably lying flat without a young pup slobbering all over me. Perhaps I can persuade him for later in the day...Meanwhile, I dragged myself out for a walk before the expected rain starts.  Chutney the poodle kept looking back at me, waiting for me to speed up to my usual pace....but it was all I could do to put one leg ahead of the other. And now, typing seems beyond me.
I keep reading about these people who are desperate for CCSVI treatment who have fewer symptoms than I do. I don't understand the urgency.  Sure, life is grim sometimes, like today, but rest and self-care often improves things and I feel somewhat better. I'd still rather wait and see what comes of the research. All of it, including the research into other areas...

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?

an irritant

I've been thinking. One of the things about being an independent person is that you think you can do everything yourself, and you wander about, trying on your own, when really, having an advocate with you would be a much wiser thing.

Going to see the neurologist, for example.

I sat there at my last appointment, watching the doc lose interest in me as my disease just isn't quite exciting enough for him. I watched his face change as he changed his view of me from "potentially interesting client" to "over 50 woman who has whined for years about aches and pains and they probably aren't due to MS". I watched as his face changed from engaged to absent.

This happens a lot with this MS thing. I don't know what I am expecting - perhaps that someone might tell me why , if my disease is so minor, I am almost completely numb stem to stern, why my legs muscles spasm up and down without reason, why walking is so painful when it really shouldn't be. Or why on days like today I have trouble thinking and tend to drag my mental floss through brain plaque with no effect.

It's frustrating as hell.

And yeah, I know I'm not as sick as some, but I've gone from hours in the gym to not being able to walk more than a km. I've gone from full-time high stress employment to barely able to manage volunteer activities. My life has been destroyed over the past two years - not being negative, and stuff still remains that is good - but I mean, really.

So as I sat there and he told me my disease was merely an irritant to me, (see salt in wound...), I didn't speak up. I am always wary of pissing off my care providers. I know docs turn against the complainers.

But if I'd had an advocate with me, perhaps they would have grabbed the collar of my healthy neuro, and asked him the questions. Perhaps they might have demanded more. Not that there is much anyone can do. But perhaps I would feel a bit less tossed aside like limp lettuce.

I got my return visit letter the other day. The neuro doesn't feel I need to be seen again for another year. Surprising, the anger I felt getting that letter. Nothing like feeling unwell and being told that is unimportant to anyone.

Now that's an irritant.

Trigeminal neuralgia, or the joys of a rictus grin

TN, both acute and chronic, is a frequent gift from the Mad Sow.

"Trigeminal neuralgia (facial pain) is characterised by brief episodes of intense, stabbing, electric shock-like pain on the face. These episodes occur spontaneously or can be triggered by light touch, chewing, or changes in temperature (i.e. cold). The pain is so intense as to be completely disabling. In addition, weight loss is common because oral triggers prevent affected individuals from eating enough to maintain adequate nutrition.

A less common form of the disorder, called" a typical trigeminal neuralgia", may cause less intense, constant, dull burning or aching pain, sometimes with occasional electric shock-like stabs."

Okay, this is all very jolly, as is the comment that it is a very treatable condition. Surgery, medications, nerve assassination all can help...however...

First, one has to see a doctor to have it treated. As my MS clinic makes a game out of not seeing patients, this seems unlikely to happen in my case.

Secondly - weight loss? Well, that could be true - fact is, with the pain and my difficulties in swallowing, there are few things I have the will to eat. Unfortunately, ice cream and mallomars and fudge and wine and beer and all that fits sweetly down the old gullet...So I have yet to notice any advancement in my weight loss goals. Alas.

What I do notice is fatigue and pain when I have to talk, always present facial pain, total facial numbness, and the feeling of dropping ice cream, mallomars and fudge out of the corner of my mouth....smiling, one of my favorite things, needs to be paced during a bad stage, or I live to regret it, with needle sharp pain up along my eyes and into my nose. I have a constantly running nose and frequently running eyes...

("Does your nose run and do your feet smell? Why, you're built upside down!")

It's SO attractive. Of course, I probably feel it more than it is visible, but on days like today I feel like my eyelid is drooping, my lip is spasming, and my cheek is protruding into space.

On the good side, I've lived with the pain for so long that it is no longer completely disabling. It's just a constant undercurrent, sometimes more turbulent, sometimes calmer. It's hard to believe it has been my constant companion since 2002. It snuck in, feeling like a gentle caress on my face, fingers stroking my cheek like an inattentive lover to the point of irritation. Then sharp pain along the line from ear to nose. Then tearing, and lip numbness, and hearing problems, and all along a sneaky chronic pain that I live with until an unwary smile knocks my socks off with a fiery line from ear to face.

Unlike my other varied MS symptoms, I don't ever enjoy this one. Some of the others are kindof amusing for a while, but I suspect that's because I never know what I get next. The ones that hang around lose their amusement value. So far I have this facial pain thing and now chronic spasticity in my flexor muscles in my legs. I'm getting bored with both of them. I'd ask for a new symptom, but I'm afraid my body would agree!

Some days you're the tire, some days you're the road

I am so sorry to whine, but for the last month or more, I've felt just like the poor mouse in this picture, shaken back and forth by my MSCat. It just won't let me go, and plays with me and tosses me between its paws and chases me when I think I've got away for a bit.

I can hear it purring with the enjoyment it's having with me.

Last night, in amongst my leg hiccups (back in full glory, darn it), I felt something new - the teeth of the MS, as it bit on my leg. The touch of the sheet was agony. Liquid fire burned up and down my right leg, causing me to gasp out loud. All of my nerves were agitated, so that the touch of a hand was an acute irritant. Even the gentle, caring touch of a dear friend.

Sometimes, I can pull it together for short periods and seem almost fine. I can laugh, chat along with the rest of them, go to events, make love, eat foods that require chewing.

But EVERY TIME, I have to pay for it. EVERY f*^&^%*ng time. After every fun day, I have days of exhaustion and pain. After every laugh, I have a moment of sorrow.

It's almost enough to make a gal give up and decide just to sit about and watch reality TV, especially on days like today when my brain is fine but the rest of me, from my throat on down, wants to pack up and go to Bermuda - and you know what? I'd send it, if I could. Even for five minutes.

Argh.

Unfortunately they are connected, my mind and body. And the final laugh is that my mind is what is wrecking my body, as it degrades. It's all so ironic, for the gal who spent a lifetime working on her mind...

On the good side, whatever wrecks things in my brains also makes me appreciate the wrecking, like the mouse admiring the artistry of the cat as it tosses her up and down, catches her by the tail, whips her about in glee. We are marvelous things, hunters and hunted.

So for today, I'll watch and admire the killing dance. Tomorrow, I'll try to escape again. After all, the cat expects it.

Sleep, glorious sleep....

The MS fatigue is unusual. It makes me believe that Epstein-Barr virus is a cause, because when it hits it is like having mono all over again. It is total, blinding, encapsulating. I shopped yesterday, but was totally unaware of my surroundings, like walking through fog. I ate yesterday, but tasted nothing. I spoke, but made no sense. I moved, but have no body recall. I could not see through the greyness around my eyes. It is really quite a dangerous state, as I am only halfway present, and probably prone to walking into speeding cars, putting my hand on burning elements, etc.
I am, quite frankly, not all there.
Yesterday was stellar. So murky, I felt wraithlike, except for the pain. Which accompanies the fatigue. Probably a good thing, as it makes me less likely to move, thus keeping me from speeding cars, etc., above.
The day passed. I did some things. I don't know what. And I slept, a deep sinking sleep, drowning in unconsciousness, hours passing without note. I slept all afternoon, all evening, and until 9:30 this morning.
The pain is mostly gone.
But I could sleep.....
Dang. I was doing so well. So I did my usual thing - I overcommitted and did too much. When I feel good, I forget I have limitations. It's a good thing as when I don't forget them, I feel a wee bit despairing.
There is really no predicting when the fatigue is going to hit, except that the day before it hits I get a zinging feeling through my body, a jangling of nerves that makes me feel overcaffeinated, slightly disconnected, twitchy. Resting then won't keep it away, but at least I can better prepare for it.
It's adjusting to it every time that is so heartbreaking. My mind refuses to accept that everything, everything, has changed.
On the positive side, it also has its joys. Today, I woke up pain free. There is nothing to compare with the joy of that respite.

Hit the ball....

The MS walk yesterday reminded me of my dad’s old joke about the golfers:
“Wow, Jim, you look exhausted!”
“Yeah – tough golf game yesterday. There we were on the 8th hole and Ralph just drops down – dead – right after he birdies the hole!”
“Oh my god – how horrid!”
“Oh, you don’t know the worst of it. For the rest of the 18, it was: hit the ball, drag Ralph, hit the ball, drag Ralph…”

Overall the walk was a festive event, staffed by volunteers with cheerful faces and happy hearts. The walkers were cheery, too, and when I had to repeatedly step aside to let them go by, especially on the last half, they apologized, encouraged me, said "No, that's okay...".
I was chipper at the start, but as we walked further and further away from the starting point and as I realized how far it would be to get all the way back, my enthusiasm slipped drip by sweaty drip away. By the last 1/4 of the walk I was swearing like a sailor (under my breath) and weaving back and forth like the same sailor on shore leave.
But I made it. Through sheer determination and grit, if I do say so myself. And that was a good thing. I was so helped by my friends who donated so generously and by my walking buddy who caught me as I weaved to the left. Thanks, too, to the ever helpful Mavis (my cane) without whom the whole thing would have been an impossibility.

Walkies!

In my town, curled along the shores of Lake Ontario, there's a wonderful free for the walking park called Lemoines Point. Today, with temperatures soaring to the high teens, I knew I wanted to go for a wander there, so I packed up Mavis (my cane) and picked up a new friend, and off we went.
When we got there, I stepped cautiously out of the car. My legs have been in pain for days now and I wasn't sure how they'd react. To my utter astonishment and child-like glee, my hips and legs worked FINE! No pain to speak of, I could stride quickly or slowly, my hips worked like they were meant to. I left Mavis in the car and threw caution to the winds and walked for about 4 km. And I could!!! It was wonderful.
Now maybe it was the company, which was quite lovely. Or maybe it was the sunshine and the birds and the cool but warm day, or the sparkling water shining through the bare trees. I don't know, but I am so happy to have had a days' respite!

Oh what tangled webs we weave..

When first we start to believe....
Yesterday I felt great, super great,, body happier than it had been in ages. I actually didn't have any pressing complaints about its messages to me, I thought we had come to some sort of agreement. I exercised, but not too strenuously, just enough to get my body moving, and it felt good. I went for a walk.
And then bedtime hit - unspeakable pain. Writhing. I slept (haha) in my bed in all possible directions. No matter where I put my limbs, they were irritated, twitching, aching like toothaches all over my body. My feet spasmed, my legs jumped, my arms moved without my mentioning internally that it might be a good idea. My fingers played forgotten piano sonatas (from Stravinsky - some atonal something).
The only thing I can think is that some of the stretches I did yesterday aggravated a lesion in my spinal cord. I've always had problems with my neck, which is where the lesion is, and stretching my neck is not overly comfortable.
I've had a few nights like this. I lie there, too exhausted to get up, afraid of the pain that will scream through me when I try to stand (cos it does). After the first few agonizing steps, it's okay, but that first step is a doozie.
It is HORRIBLE. And now I'm afraid.

Fear and Trembling

The expression "fear and trembling" originally appears in the Book of Psalms, and recurs in the Yom Kippur prayer "Unetanah Tokef" - which describes man's inconsequential status of man vis-à-vis God, and his fear of the Day of Judgment:
The great shofar is sounded
A still small voice is heard
The angels are dismayed
They are seized by fear and trembling
As they proclaim: Behold the Day of Judgment!
from: http://www.hma.org.il/Museum/Templates/showpage.asp?DBID=1&LNGID=1&TMID=84&FID=524&PID=3063
Well, I don't think anything that grand is going on with me, but today I had a breakdown. I was at the dentist, and it occurred to me that I was never going to be able to afford the expensive caps they want me to get, that I would soon be losing teeth, that all of this was tied to my inability to work, that I still would have to spend hours being drilled by an unsympathetic dentist who lectured me about how I hadn't done anything properly etc., etc., pointing out that, yes, my life is one series of bad judgments and the MS is probably just a payback for them all.

It all hit me then, the thoughts of growing disability, the fears of dependence on someone, the loss of self this whole thing is causing me. Sure, I had pride, but most of that had already been beaten out of me. Sure, I thought I was valuable, but truth be told, none of us are. I thought I was independent, like Simon and Garfunkel's "I am a Rock", but no.

I am afraid. I am so so so afraid. I am afraid of losing everything, of being in a nursing home before I hit 65, of being unable to speak or write or see or drive or walk or sit or feed myself. I am afraid of the pain, which I am already getting to know. I am afraid of being alone in my pain and degradation.

I am grieving, and it's hard. I'm angry, and that's hard, too. It's unfair. There is no MS in our families, ever. Except now. They think MS might be tied to Infectious Mono, which I had, badly, from living in residence. No kissing involved. NONE.

I'm afraid today. Tomorrow will be better. Tomorrow, I'll be back to taking over my new, smaller world.