Livin' large in a small body

As I near my 60th birthday, I have to admit, I've always been the tiniest bit chicken about things. Travelling, sleeping alone in the dark, being made fun of.

Not that I don't have reasons for all that - I blame the Catholics for my fear of the dark, my small town life for the travelling thing, and being made fun of for being made fun of. At 5' tall on a big hair day, I've been up for my fair amount of abuse. Add smart and nerdy and dressed in what one of my high school friends gently referred to "slightly out of style" clothing, I stood out.

Heck, I've got a scar from playing my clarinet in band. Who gets that?

Anyway, through the mystical bath of being abandoned in my marriage, being moved all over the world, sleeping alone a lot, I've gotten braver. I think. I've lived alone for most of 8 years now, and it's okay. I've moved away from family, and it's okay. I've run for office, and that's okay, too.

In all of these things, I "whistle a happy tune"... and I throw myself in. Pretending not to be afraid does seem to get me past most things.

The MS thing has thrown a bit of a wrench into my plans. See, I can pretend to be brave, only to have my body crap out on me at the moment when I most need it. It is frustrating. I am still at the point of refusing to allow it to be in charge, but I am finding it makes sense to take it into consideration.

So living large is developing smaller parameters. I fall asleep easily, so long solo drives (which I loved) are out. Long solo walks likewise. Legs simply aren't reliable, though I push them as hard as I can. Hanging out late at night in noisy places knocks me out for days. Noise itself is enough to overwhelm my senses. I can't have massages because it overwhelms my body. Too much sensation at once.

But no, I protest! I can't be done yet!!



So next week I'm off to ICELAND for the Iceland Writers Retreat that sounds like a pile of two transatlantic flights wrapped around a filling of all sorts of activities, cerebral and physical. I'll even have to be social, attempt to be witty, intelligent, knowledgeable and yet receptive to learning. The whole thing seems like a huge challenge for cognitively-impaired old me. What if I get lost? It's not a completely inappropriate fear - I get lost all the time.

Last week I had a huge anxiety attack about doing this all on my own, but I've met online a bunch of fellow Canadians going to the same event on the same plane so I feel supported a bit. I'm just hoping against hope that my body works with me. I'm telling it, "one more time into the breach, my friend..."

My son says I keep using my MS as an excuse for taking exotic trips. It's true. MS makes me feel like I'm on a merry-go-round, not knowing where I will end up. I may have a long ride, or I may stop on the next round. No one can tell me.

Despite my fear and pending bankruptcy (kidding), I'm off for this trip, hoping I can grab a few of the golden rings as I do. Northern Lights? Icelandic horses? Volcanoes? The most literate society in Europe? Icelanders, such interesting people, living in the middle of the harsh northern ocean. To say nothing of all of the authors I'll meet. Wow.


Meanwhile, my body mutters. It mumbles. It takes a moment now and again to remind me that all is not as it should be.

Ah well, whistle a happy tune, and off I go!

So, how does it feel for those of you who have to deal with a partner with MS?

I'm hard at work on a book about MS and intimate relationships. It's been an interesting process.
I've been to our excellent local sex shop, Venus Envy Halifax, and interviewed the funny, smart and wonderful Kayleigh Trace, who provides sex education through the shop and advocacy everywhere.
I've wandered the aisles of hardware stores, looking for things shy men could pick up to spice up their sex lives. I've done the same at Dollar stores and pet stores, I've cruised so many websites, looking at furniture and various equipment and ideas and such.

I have to say I have NOT gone to porn sites. I personally find porn boring and degrading, so I asked someone else to do that research for me. He's got a background in that stuff, so can judge better. I always find myself wincing or giggling.

I've read every sex and intimacy related book in the Halifax Library system. There are a lot. My favourite is A Tired Woman's Guide to Passionate Sex, by Laurie Mintz, because even the title sounds right.

I've done the same with MS related books. Fewer of them, and more focused on things like taking meds to control pee, or helpful advice like "Talk to your partner". Oh, and full of grim info on what can happen with MS and such as it progresses. Not cheery reading for me.

I even started a survey on Survey monkey about what people wanted to know, about challenges they had, etc. Belatedly, I added a second survey for partners, because I want to know what they want, too. Being as how good relationships often require partners....

But I need more responses. I've had over 100 responses to the MS-ers survey, and I would love to have more to the partner's half. Could I ask you to circulate this to your contacts and partners?

Partner survey

Oh, and another question - regarding illustrations. I don't have the budget to hire actors to pose in sexual positions for me, and trust me you don't want me in the book, so I was going to either use:

a. Wooden dolls
b. Needle felted dolls

to show positioning. What do you think? All comments welcome.
Here's one of my needle felted dolls (dressed) for perspective:

So, if you're crazy, how do you know?

Just came from a very non-rewarding visit to my MD. I battle depression as a part of my MS and it is really screwing with my good time lately. Could it be the fresh lesions on my brain despite my DMT? Or various family issues? Or my being financially tight and chubby and getting older? Or maybe the visit with my neurologist where he told me that yes, I was actually having new symptoms that affect my hands (AAUGH!) and eyes (DOUBLE AAUGH!)? Serious enough that he ordered a repeat MRI for me and I only had one six months ago. (unusual here in the hinterland). Who knows?

Or maybe my MS is just attacking my emotional centre as well. It'll do that.

Anyway, my doc is of course asking me what my problem is. "Don't you feel you have value?"

Um, not if I'm not contributing, no.

"So are you saying people in wheelchairs don't have value?"

Of course not. They all have their own value. It is MINE that isn't there....

It's nonsensical, but then those are the blinders depression puts on a gal. I can't even argue it anymore. My therapist is trying to convince me I have value in just existing, but hell, I'm not buying it. Funny thing is, I know others who just exist and I love them dearly and never ever think they should go tumble off this field of tears, but me, yep, the thought of not being here to deal with it all again and again and again is tempting.

See, it's all cyclical, and I don't even have periods anymore. I sink down into depression, I wallow, something jolts my battery (usually something/someone new) and I rumble to life again, but the battery light is still flashing on and off in a warning sort of way. I don't think I've ever had it go out completely since I was diagnosed, and I am getting SO TIRED OF MYSELF.

Fortunately, I only live with a cat, so the damage I inflict with my depression on others is necessarily limited to a few guilt-inducing emails now and then. My cat is an older fellow, declawed and neutered, so he can identify with my anomie. For a while he lived with my birds and was told not to pounce them. He's happier now that he has my permission to eat any moving small creature we come across, especially spiders.

I know exercise, music, sex, good food, cheese, and girly drinks all help. But when I'm depressed, I can't make myself reach for those things. I simply wallow. Surprisingly, the other day, I actually cried. Haven't done that in years.

Hate crying as I go all blotchy and red when I do and I develop a terrible headache. So then I feel awful about crying, which isn't helpful on the whole depression thing.

In any case, a lot of this is probably due to a MS flare-up so I know if I wait it out or do something, it will eventually pass. It's good to know that.

For any of you in my same mess, there's a pretty good book online about ms and depression 
symptoms, written by the same author who wrote "MS and your Feelings". Check them out, and get yourself some support. The one thing I've learned through all this is that it's your friends (and pets)who will see you through. Don't bother counting on family.

Oh the sweet sweet aching disappointment of MS

I had my arthritic knees replaced in December - both of them at the same time - to help me cope with the inevitable MS flare up post-op.

I didn't go through a slump, really, denied it totally. Put myself through physio and lots of exercises and trained myself to go up and downstairs despite the warnings from my legs that all was not nice in there. Foot spasms, calf spasms, aches in my thighs, rock hard muscles.

So, now, three months later, I fully expected to be fine. I worked so hard on my recovery, I foolishly thought that my MS would cooperate with me, help me along. I am walking straighter, faster, longer. But all is not well.

Instead my MS is thrashing me through pain and spasms every night, non-dependent on my activity level.

If one more person tells me I need to pace myself I will go mad. I've lived with this disease for ten years or more and have learned how to pace myself. I can't bear much more advice to "rest", "you're doing too much" etc.

With this disease, it is so easy to simply stop. I fight this every day. It's not good for me in any way to stop. It's better to do something.

But it is heartbreaking to think you are making progress (as with my knee replacements) only to realize you remain in the same place in the end...

Sigh.

Must go stretch...

Office spoons

There's a cute little analogy that goes around about how to pace yourself with MS. It for some reason equates your energy to spoons - every day you start off with the same number of spoons, and you use them up throughout the day - getting dressed is a spoon, making breakfast is a spoon, going to get groceries is five spoons, and so on. Once the spoons are gone, you have to wait til they come back.

So if you plan ahead, you can have your cake and eat it to, so to speak. You just make sure there are enough spoons left to do what you want in the day.

Aha. One problem. With MS, our drawerful of spoons is like the drawer of spoons in the office. You know, the one that one day can barely close because of all the spoons, and the next day has only one bent one in the corner, and for some reason, a pickle fork.

With MS, there's a secret someone taking away and adding spoons. So, though we may think we can do this and that when we wake up, we may go to the drawer and find our expectations have to dramatically change. We have to adapt, every day, to what we find in that drawer.

It's hard to explain this to people without MS (PWOMS). But most people understand about those office spoons.

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.

Our blissful socialized medical care...

For the longest time, I've been a ranting promoter of the Canadian system of health care. My experience had always been that when you were sick, you got care. When you weren't that bad, you waited, but eventually you got good, mostly free care.

Cases in point - when my kids wheezed with asthma, they were seen immediately. When my son's ear got ripped in rugby, care was quick and caring. When I lost my sight at the start of a MS flare-up, I was totally mothered. And now that they've found that my knees are destroyed, I'm in relatively quickly to get them fixed. Things still seem to be flowing as they should.

But I'm seeing the changes as I get ready for this knee surgery. Patients are grouped together in rooms now without concern for gender. The hospitals are running at too high a capacity for such niceties as unisex rooms.

I'm asked to bring all my drugs in with me. Presumably they will simply give me my own drugs rather than ordering them for my time in hospital from the pharmacy. I will be bringing in everything I need for my stay, including clothing and whatever.

There are signs everywhere telling me that as a patient, I have the right to ask people to wash their hands before touching me. I find this sad, as it speaks of nurses and docs running flat out and exhausted.

There's no guarantee of in-hospital rehab follow-up care - I will likely get physio twice a week - in the community - if that. Home care nurses are scarce as hen's teeth, and my bed is going to be barely cooled before they fill it again. My son has experiences of "warm bedding" it on the navy ships - I didn't realize this was the case in hospitals now...

Ah, I remember the good old days, when I had the time to rub a patient's back before bed and make them all nice and cozy. Now I'm going to be managing my own pain meds, up and about before my legs figure out they've been traumatized,

I don't think this is necessarily a bad thing. And I foolishly have confidence that if I need services, the system will step up and meet that need, as well as it can. But I'm expecting a Chevvy service, not a Cadillac one.

Mind you, I've never liked Cadillacs. Nah, I lie. I like luxury as much as anyone. But I am still in the category of preferring to have everyone receive care according to need, not according to ability to pay. So I'm not complaining. Um, yet....

Let's hope my wild knee ride meets my needs... (note: photo below is not of my hospital)