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...
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...;-)


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)

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.