It’s all about tomorrow. But it starts days ago with the chaos before the chaos.

Tomorrow I go to Kamloops for some medical testing and another doctor visit and some shopping (because you don’t drive for 2+ hours and stay overnight and not take full advantage, okay?) I don’t expect much positive outcome from this trip. In fact I expect to feel destroyed by it. I’ve had a head start.

It’s been hot lately, and unlike my younger self I no longer deal with heat well. For example I was going to go out to the cabin and mow the weeds down this weekend, but I’ve canceled those plans because it’s too hot to think about the loading up, the driving, the unloading, the mowing, the loading up, the driving … Never mind doing it.

Now in the meantime Good Friend Wife is running around metaphorically in a rush planning of a trip to England because the situation there with her aged sister has gone wahoonie-shaped. Nothing like a big tank full of stress washing over your life to make you feel like you’re drowning. It’s a little chaotic right now.

Okay so here’s me dealing with the usual day-to-day stuff plus planning my trip. So far I’ve got … nothing. I should be making a list of where I need to go and what I need to do there. I have the appointments and the motel jotted down. It’s going to be close to check in at 2:00 and then be at the hospital within 30 minutes. That seems to be occupying my mind. No list of things to get has been written, and I’m not silly enough to think “oh, I’ll remember”. No, I’d better make a note of every thing I mean to check up on no matter how inconsequential. Oddly the adrenaline is keeping the nerves firing somewhat better than usual. Hah! I can’t wait ’til that dies down and I crash like the Hindenburg. In the meantime it is artificially suppressing the symptoms. Oh great.

Oh and then while Mrs. is away for 3 weeks I’ll be doing all the stuff she does around here (except I ignore the phone rather than answer it) and looking after myself, 2 dogs, and 3 cats. This makes for some logistical difficulties as leaving the dogs on their own isn’t a great idea.

But wait, wasn’t I going to go out to the cabin and stay and work on that? Ha ha ha ha ha ha! There’s another Summer shot to hell.

And good grief I’ll have to do some pre-planning for here to ease things when she’s not about to keep the zoo under control.

Yeah I was going to do some photography and I’d been idly looking and pleasant things to play with maybe and …

Also a good used tractor just came up for sale locally at a reasonable price. It’s one of the things I need. Yes; need. It would make several chores, like wood harvesting, easier. No way can I fit buying that into the schedule or finances now (hey, they tripled our property taxes – wasn’t that nice of them?) And we just paid $$$ to have the septic tank pumped too.

Did I mention the mosquitoes? There’s lots of them all over the place.

Just … what do I have to deal with today? Can I get that done?

You know, it really isn’t a good idea to tighten bolts past their tensile strength. That’s what I feel like right now.

Who am I kidding?

I was in such a happy mood; I had new toys to play with. I was (and am) anticipating buying more toys to play with. All of them photographic in nature. The resurgence of photography in my life has been the best tonic yet. But is it a cure-all or a placebo?

What I was looking forward to was getting out to the cabin and spending lots of time walking around in the woods seeing what there is to photograph this year. Quite often it changes from year to year, for reasons unknown. Oh there are always trees and deer, but the bird population has its fluctuations which make for some interesting surprises.

Well I did some errands Friday and that turned out with the usual severe exhaustion for a short amount of effort. Having to rest and catch your breath between stores is silly considering how close together the stores are. In the afternoon came a thunderstorm which knocked out the power, and again 15 minutes of connecting up the generator was marathon effort for me. My wife noticed I wasn’t so much breathing as coughing steadily and trying to suck air in between the hacks.

Yeah, so I’m going to go out walking through acres of forest, up and down miles of old logging trails am I? Somehow dropping dead in the middle of nowhere doesn’t hold much appeal. Okay, maybe I could jump on the ATV and ride up to the dead ends of some of those trails and then walk around in a controlled area. That might work. But will it by the time I get to be able to do it, though?

So here I am poised to spend some serious money on new equipment to, let’s face it, play with and wondering if I’ll really get the chance to. I don’t expect much along the lines of answers from my next doctor visit because there never are any. This is in fact the major problem! How do you plan for a future when you haven’t a clue what it will be or even if it will be? Am I going to spend up to $1,000 on stuff that will just sit because after I get it I’ll only be able to walk once around the house? Or may be in a wheelchair? Or may be just a lump on the couch? It wouldn’t make sense to.

I am currently studying the Zen aspect of it all, and it’s not simple. The conflicts between “might as well spend the money ’cause you’re going to die anyway and five minutes fun is more than none” and “it’s foolish to spend the money that might be needed for something else more practical” as well as the ‘blind alley of fools’ situation (this takes too long to explain; perhaps I should write a piece entirely on my use of Zen) leaves no clear path to take.

So I will await the doctor visit. I will hold off on orders. I will twiddle my thumbs.

Next week it’s supposed to be warm and sunny. I may not be able to do work per se, but I might just go out to the cabin with the old camera and the new filters I’ve just got and walk carefully in a small area and see what there is to photograph. My work ethic will demand more, of course. I suppose I could sort through the loose lumber scraps the contractor left and maybe build the new propane tank stand and … You see the problem. Giving myself permission to be ‘wasteful’ of time and energy and money (it costs a fair bit just to get there with our gas prices). Waiting for the stars to align, so to speak, so that the way is clear. Weighing the pros and cons of so many aspects. Knowing that if I had more of any of the resources (time, energy, money – all are at a premium right now) it would be easier to make the right choice. Or at least not as painful to tolerate the mistake.

It’s Monday, but it was Wednesday

What an exciting day. Got this great deal on some paving bricks to redo the back of the cabin. Nice. Drove in to town to get them and the fellow helped me load up the trailer. It took half an hour. I’m feeling good; the chest pain is behaving itself. Say, why not take the rig out to the cabin and unload it and maybe do a bit of work there? Sounds good! Probably take me an hour to unload since it’s just me but what the hell, right?

Along the way I can’t help but notice the trailer is wallowing behind me like a hippo. Fair amount of weight in it, I guess, as I can feel the acceleration down the hills and the engine struggle climbing up them. Besides, the tires are a bit squat. More on this later.

O-kay! Now we need a place nearby yet out of the way to stack the 260+ bricks. Hmm. There really isn’t one. Wherever they go they’ll either be too far to fetch once that stage of work starts or will be tripped over or run over or damaged by a falling satellite or incoming ballistic missile. Gotta stack ’em somewhere though, so … Here they are, all stacked in stooks:


(I splashed some water on them to show the colour better.)

How long did that take? A few breaks for donuts and drinks to keep me going. Got to pace myself, y’know. Take it easy. TWO HOURS?! Who said I could take it that easy? I’m sweating like a pig now – no, bad analogy as pigs don’t sweat, do they? I’m puffing like a steam engine. Also a bad analogy. I’m tired, sweating, and breathing hard like an old man who has just done more physical labour than he should have. Not very poetic, but technically accurate.

I saw a black bear come down the roadway. I thought I could quietly grab my camera out of the truck and get a picture of him. Nope. He saw me and ran off. I scare bears.

Too bad I don’t scare mosquitoes. A few of them about. More than a few.

Well I hate to go back with an empty trailer so maybe I’ll just slice a few rounds off that tree near the road before I go. Ha, ha. Cutting wasn’t hard. In fact moving the rounds wasn’t hard, as I roll them and tilt them into the trailer rather than lift them. Okay, turns out it was hard. Really hard. And you know those mosquitoes who aren’t afraid of me? They brought all their friends. Bloody things swarming around while I try to finish up and get out of there.

Right. Turn the A/C up full and freeze the buggers out of the cab! Roll down a window and shag them out. Get out on the highway. Er, logging road. Keep trying to get rid of the damn bugs. My goodness this trailer pulls easier with just fifteen rounds of wood in it. Got home. Probably only a few dozen mozzies came with me.

But wait, there’s more! Not going to unload because I’m not that stupid. Just nearly. However the delivery truck shows up with a double order of dog biscuit boxes. You should see how Marley reacts to biscuits; you’d think they’re the best thing in the world. Anyway I carry the boxes in to set them on the counter.

That’s when I screamed.

That’s when my world went horribly wrong.

After all that physical labour, a couple of boxes of biscuits and … right arm seized completely. Friend Wife examines it; muscle is totally rigid and contracted, hand can’t move. Okay, we have pills for that. She pours me a drink, I take the pill, and expect to do a little left-handed browsing while it takes effect.

Left hand suddenly spasms and seizes.

Brilliant. I’m pushing all the buttons in the control room and nothing is happening. Hello paralysis! Sit and wait and wait and wonder. Slowly the spasms die off and movement returns. Wow. That was fun. Not. I’d like to say such events are unusual, but that isn’t true either.

Maybe I was overdoing it. How much do those bricks weigh, anyhow? (Looks up info on hardware website.) Uh-huh. Multiple by 260 … um … I guess we see why the trailer was doing odd things, as it’s not really meant for hauling 1,560+ lbs. Neither am I.

I got a couple of weeks to the next doctor visit, but this is all getting too weird. In the meantime I think I’ll just skip doing the Hercules impersonation.

Meanwhile, here’s a pic I snapped on the way home:


Pills and Ills

The cyclobenzaprine wasn’t doing anything for the now persistent if not consistent chest pain. In fact I was having problems with pain in the feet and legs too, and tried a hot bath to improve circulation. It did nothing. Although getting in and out of the tub aggravated the chest pain.

So I decided to skip the muscle relaxant for a night. The ‘hangover’ effects of those powerful pills are not easily dismissed; you tend to be foggy for hours after finally getting awake. Plus you’re not supposed to take them continually. A few weeks at most. Instead I downed a large Tylenol to subdue the pain and induce the sleep.

Well that didn’t work. Or it did but only for a few hours. Then I spent a lot of the night awake, in pain. I could have taken another but for being too tired to get up and get it. Chest pain, foot pain, leg pain … eventually more sleep – after my wife had got up for the day.

A couple of hours later I woke up. I had to; my hands were tightly clenched and my forearms screaming. What can you do when your muscles decide they are an independent entity not subject to your control?

The curious thing is it’s not the muscles. Or at least it does not originate with them. If you apply a topical form of relief it has little to no effect because the problem is the signals sent to the muscles telling them what to do. This is a messed-up nervous system of some sort.

Another medically interesting aspect is how adrenaline can override the problem and cause things to appear normal, for a short time. If you’re really psyched about something it’s ‘all systems go’ – until you’ve finished the task and then it’s ‘crash like the Hindenburg’. You can’t run on adrenaline all the time, and there’s a big price to pay when you do.

Right now doing as much nothing as possible and counting down to the next useless doctor visit. Ironically that will be under the influence of natural stimulant as it entails a two-hour drive to the city and an overnight stay. I hate to think what shape I’ll be in the day after I get back.

No pictures. I know they’re more interesting than words. Sorry.

What happened to Tuesday

My goodness but Robby Burns was right.

Today I was going to the cabin to do more work. Had the rig all loaded too. Put the computer and camera in this morning, grabbed the snacks, and off I went. Stopping first at the transfer station to unload the garbage, where my ever-undependable grasp allowed the first can to go right over the edge and into the bin. Oh well. I had in fact just bought two new ones as these were pretty beat, but I had intended to take them to the cabin for use there. Sometimes you just go with the Zen, alright?

Off I went down the wretched road, and noticed it was sprinkling a bit. The further I went, the more dense the sprinklers. By about 6 kms it was wipers on intermittent and better have the lights glowing. This was not boding well.

Now, on top of all this I’m dealing with a pain that feels a lot like a broken rib on the left side. It has become rather intense and hard to ignore when moving or trying to use the arm. The fact is loading and unloading those garbage cans was quite a feat, even though they were only half full.

Do I continue? It’s raining now, and probably will be out at the cabin. I’d have to go in and out and do things in cool, damp, muddy conditions. With copious amounts of chest pain. Apply the Rule of Zen: turn around at 8 kms and go back before wasting a lot of gasoline for nothing.

Home again. What now? Well there’s this pain in the chest … Unhook trailer, drive in to town, and see how busy the ER is today.

Getting the X-rays was an adventure in pain. Having discussions with the nurse practitioner and duty doctor about the history of this condition, without going overly into detail, was interesting. Being told the bone doesn’t appear broken anywhere was somewhat disappointing. It sure feels broken. Broken is something I can relate to.

So just what is the problem?

Well you know all that coughing? The fits that I thought might have caused the break? The ones that keep trying to choke me to death? The ones caused by spasms in the intercostal muscles due to … well no one has definitively said yet. So this doctor thinks the pain is due to some really bad spasming or possibly damage to one right about there and I need to see someone about what the hell is causing it because eight years is really too long to be messing about with this.

I’m inclined to agree, but no further along than before.

Anyway Tuesday is shot to hell and the future doesn’t look bright.

I’d add a photo here for fun, but the six I took this past weekend are all no good.

Monday: recovery

It’s Saturday as I start this. Note the word “start” as I’m sure it will take the weekend to get the thoughts down.

I’m trying to recover.

Mowed the lawn this morning, which entailed a bit more than firing up the mower and driving it around. Even so, when I did get to that part it proved quite daunting. Perhaps because of the steps needed to dig the mower out from behind other things and check it over and et cetera until the motor surrendered to my efforts and ran.

Although the “dig” part is more telling, because first of all I haven’t recovered from Thursday’s efforts – some of which involved digging. Never mind Friday’s brief shopping trip.

Here we have a thing. I can do stuff, right? Unfortunately the effort expended in doing what I still consider to be “simple” or “easy” is more like marathon running or an ironman competition to my body. I started out the day with pains which should automatically be equated to “don’t do anything; take the day off and rest” but which get ignored because things have to be done.

Like mowing the lawn. Well, it looks awful afterwards because it’s not exactly neatly mown. More like I drove over the highest bits to knock them down so the place doesn’t look abandoned and invite burglars in. There was a time when I would use the push mower around the edges, but I’m not that much of a masochist. Likewise I can convince myself I do not need to trim, because that causes some rather unique and unwelcome sensations – especially in the hands.

It’s after such moments that the frustration really sets in and you want to swear a lot. Genghis Khan! Does everything have to be such an almighty struggle? Staying active may keep the muscles from rotting away on the bones and it certainly detracts from the problem, but only on a pro tem basis; the minute you stop you become all-too-aware that the body is old and unwell and unwilling and is now going to ‘get’ you for what you’ve just forced it to do. I can’t imagine how many days of really doing nothing it would take before the physical complaints end. I suspect they never would.

And it’s Saturday and I’ve got to prepare for more work ahead and I’m ignoring a big project in the yard outside (an unfinished building) which must be seen to at some point. Do I really want to climb ladders and scaffolding and reinstall roof trusses? No. But it needs doing and no one else will do it. I’ve just had a large does of hired incompetence too, so … here’s me again at the short end of the stick as usual. Now let’s see how Sunday goes before I add that on and publish this for Monday.

Into Sunday we go.

I was going to skip taking pills last night, as I take too many (all of them have dire warnings about long-term use effects). By the time I was ready for bed it was obvious sleep wasn’t going to happen without one. I chose one of the ‘mild’ ones; acetaminophen in a strength meant to anesthetize elephants. By 11:30 PM I was awake and in pain and knew I needed another. This after a day of little activity, aside from mowing the lawn. Twelve hours after going to bed I’m up again, hands and feet tingling, clenched, feeling like they’ve been run over by a truck. Thus the day begins. There is nothing scheduled for today, and I might just about manage nothing.

Midway through and there’s not much improvement in the pain department. I wrote a bit about cameras, and that’s pretty much the extent of my efforts today. Having trouble walking, in fact. Not keen on taking any more pills because they don’t have much effect and I will need to take something to sleep tonight.

Whole lot of no fun.

Now it’s bedtime on Sunday. There hasn’t been much improvement. The coughing fits around dinner preparation were epic – near choking. It seems if I can hold together through them the muscles will stop spasming and ease off. It’s like disturbing them from resting state causes the spasm cough, but then they’ll get into the rhythm again if I don’t choke or collapse. Boy, where’s the comfort in that?

There will be a cyclobenzaprine tonight, so that there may be a tomorrow. Here’s hoping the sleep between will be uninterrupted, or at least not require another pill.

Finally Monday

I got through the night alright, and now just need for the after-effects of the pill to wear off so I can get through today. Coughing has started already this morning. In about three weeks I have more testing and another doctor visit. I’m not expecting anything though; wherever this thing is getting to, I think I’m there.

I’d like to be able to go work on the cabin some more tomorrow. At this point it’s somewhat doubtful and I may have to delay. That’s the worst of it: there are no good days, just “not so bad” ones and they don’t come as a matter of rest or medication. Make plans? Why? You never know if you’ll be able to follow through.

While fresh in my mind

Monday is forever condemned to being about my health. This makes it boring, and easily skipped for those who have more interesting things to do like watching paint dry.

This is being pre-written so that I can remember the vibrant details exactly how they happened.

What happened was another wonderful doctor’s visit, precipitated by a letter from the government sent to the wrong address requesting more information about my condition. Imagine the surprise when the Dr. and I looked at the forms and wondered why they were asking the questions they already had the answers to. Details? Like, an official diagnosis perhaps? Gee, I’d like one too. Now would you mind lighting a fire under the medical services and getting ’round to it?

I guess they are operating on the principal that if they deny me the medical services I’m entitled to they don’t have to give me the benefits I’m entitled to. In this case “benefits” isn’t asking for a handout, it’s requesting the tax credit so my money doesn’t disappear up Justin Trudeau’s nose. Or wherever he puts it.

Curiously our province just did a big celebration about how their new round-the-clock MRI services had done 44,000 exams last year which was far more than they anticipated. That is exactly the procedure I’m still waiting for, even though the request for my case is marked “urgent”.

I had a few words about the lack of other appointments and tests that were supposed to happen. I mean, it was almost two months ago that I got into this unbreakable cycle of near-death experiences (you can’t swallow and cough at the same time – FYI). I wish the doctor had followed me out the door of the clinic, because the next uncontrolled coughing spasm hit the moment I got outside. By the time I got back home I was in a miserable state: along with the coughing comes a shortage of oxygen which gives you a miserable headache, never mind the physical exhaustion. Frankly my chest doesn’t stop aching anymore and I keep having to take pills to calm things down enough to sleep. You’re not supposed to take that stuff so consistently.

Who ever would have thought Limbo is worse than Hell.

Anyway, that’s enough griping. Next entry I promise will be something not so unpleasant. Probably.

Side effects

Today’s missive is on the peripheral problems. You could expect me to mean the tingling or numbness that occurs in extremities or the unwanted reactions to medications. Those would fit. Instead I mean to make brief mention of the illness caused by the illness, which is a little bit more difficult to understand.

First of all it depends on what particular symptoms are most manifest with the individual. In my case it’s the coughing, caused by spams in the intercostal muscles. There isn’t any medication I’ve found that will relieve this without putting me under, so ‘function’ means ‘cough’ in my life. The trouble is the coughing gets bad. Really bad. The more I do, the worse it gets – until it won’t stop even when I’m sitting down (lying down is asking for instant death in these circumstances). We’re talking vomiting and choking here.

And that’s what I mean by ‘side effects’ (in addition to it being an amusing reference to the fact the muscles in question act on your sides, see?). So I can live with this MS stuff indefinitely, providing I don’t try to do anything. Some life, eh? All other sufferers know how it directly affects trying to do things, depending on their specific symptoms. The fatigue alone is enough to curtail activity of any sort.

But here we have a case where symptoms can actually induce additional medical problems. My esophagus doesn’t work right, so I get to have GIRD which causes acid to splash up and not just give you a bad taste in the mouth and heart-attack sensation in the chest, but can actually do damage to lungs or cause esophageal cancer. In the immediate mode, having stomach acid (and other liquid) land in your lungs can induce pneumonia. In the more immediate mode coughing occurring while attempting to swallow can cause choking. Just yesterday I had another run-in with that side effect, and finding yourself in that situation is no fun at all.

Now on the less urgent and dangerous scale there is problem of chest pain of a different sort, caused by the fact the intercostal muscles have simply gotten tired from spasming. The chest aches. It hurts. It is tired. It doesn’t want to go on breathing. If it ever decides to overrule autonomous control by the medula, I’m in trouble. In essence I’ve got three different ways of potentially dying from asphyxiation. Are we having fun yet?

All I have to do to avoid this is … nothing. Literally. Sitting still and doing nothing? No problem.

Except life doesn’t let you, and even if you did it wouldn’t be that much different from being dead.

The pains, the pains.

Saturday morning I walked the dogs twice ’round the house (it’s not that big of a house), grabbed a smaller-than-usual armload of wood, and went back in. Dropped the wood in the rack and sat down. Calf muscles screaming at me like I’d just done some dead lifts of a 1960 Buick La Sabre. Lungs trying to go on strike. Nothing relieves it now. Nothing. I could do with the ‘remitting’ part really soon, okay? And if this is the new ‘plateau’ I’ll take vanilla.

Pain. It’s all about pain. Fatigue, yes. Everyone knows that’s symptom #1, but #2 is definitely pain. There’s too kinds: the severe, and the persistent.

The severe is, in a strange way, easier to deal with. It’s vicious to be sure, but it does go away. Okay, it comes back too. But the knife in the thigh, angina-esque chest discomfort, and random sensations other places that cause agony for minutes or even hours do vanish eventually. Even if they are largely unaffected by anything less powerful than morphine. As with the fatigue there is some break which allows you a few minutes to get through some small daily routine – quickly before it comes back.

The persistent, on the other hand, is just there all the time. It’s like being surrounded by whining children complaining they don’t feel well, and it comes from everywhere. Each part of your body crying for attention and trying to outdo the other bits. Again the medications do little for this, because in fact the afflicted areas aren’t afflicted at all – only the nerves think they are.

Oh the nerves. I can recall all-too-vividly having what was called “neuralgia” on the right side of my head when I was about 12 years old. Nothing helped that either, but it did go away. In retrospect it was probably this thing I’ve got trying out its boxing gloves. As an engineer I can readily understand nerves as the body’s wiring, and the missing myelin as frayed insulation allowing short circuiting. Because the wires run “both ways” (both input to the brain and output to muscles) the unintended sparks cause unreal pain as well as involuntary muscle action – or indeed inaction.

Sometimes I think it would be beneficial to be able to connect one’s nervous system to that of the attending physician, so you could ‘throw the switch’ and say “THAT’S what it feels like, doc!” Most of them would keel over from the sudden shock, but what the hell. If you get the impression they don’t take you seriously when you describe the endless randomized pain inputs you’re probably right. There is a tendency for people to say “that’s impossible” and dismiss your complaint as “whining”. I can tell you that utterly failed wiring is a lot easier to trace down and repair than intermittent faults, and this MS stuff is definitely intermittent faults – until it fails entirely. The biggest difference is you can fix wires. Nerves, not so much so.

So right now I’m stuck. I’m at a point where I can barely manage daily routine, and that with difficulty. The idea of tacking any sort of ‘project’ is right out, and that’s going to cause more difficulty. I see ugly times ahead, and even if they get ’round to giving me an official certificate of diagnosis it isn’t going to ease that problem. Let’s just say I don’t have a lot of support in my personal life and that isn’t going to change either. There is the need for a long-distance trip coming up, and there’s just no way I can do it. That is going to cause all sorts of ill will within the family, and there will be no sympathy for the devil (me). Enough said on that.

Six weeks it’s been (possibly more; I’ve lost count) since this latest relapse occurred. And I’ve just forgotten what I was about to say. Damn. Oh – something about not feeling much like writing about other subjects because of it. I will, though, or remain silent. Why? Because I’m sounding like a whiner even to me.

I need chocolate. It’s a damn two hour plus trip to and from the nearest city that has it. I don’t think I can do that either. As for the cabin … I don’t see that happening anymore either, and that will trigger World War Three around here.

I don’t need this shit happening. I really do not.

Medicinal Monday

I’ve spent some idle time reading through various blogs of others suffering from chronic illnesses, specifically MS. Until I had I thought I was doing well. But here I see people writing about working in their garden and doing … well, normal everyday things most of the time. That’s when it hit me that I can’t even remember when I last had a ‘good’ day. We can argue whether that’s due to failing short-term memory or not, but most likely not as I’m sure if I did have a truly ‘good’ day it would definitely stick in my mind.

It’s gotten so that ‘normal’ is bad, and ‘good’ is unheard of. Take Wednesday last. I had a cyclobenzaprine the night before so I got some sleep which lingered into the post-pill hangover that ruins the morning. But I wasn’t coughing so much, and since I had nothing to do but sit around and do nothing the ill effects were at a minimum. Eventually the residue of the medicine wore off and the coughing increased, right about time for dinner. That’s as close as I get to a ‘good’ day.

Going to town to do shopping and errands is an exercise in logistics and “Plan B” planning, as I set down which stops I absolutely must do and which I can leave off once I get to feeling too ill to continue. Town is all of 15 minutes away, and it’s quite small and used to be easy to deal with. Now it’s a bloody marathon of forced effort while struggling to breath and walking on legs that feel like they belong to a marionette. So I preemptively eliminate the inessential stops, sometimes even before I start feeling sick to my stomach – which generally begins before I get off the end of our road.

Doctors can not understand this. They figure if you are able to make it into the office on your own you can’t be that bad off. HAH! I suppose the day they roll me in unconscious on a stretcher they’ll get the message. In fact very few people (not just medical professionals) understand that you can force yourself to do what needs doing, and ‘pay for it’ later. On more than one occasion I’ve been told to get a divorce, although that isn’t the way it was phrased. More like “make changes to make things easier for you”, which unfortunately would make this really, really hard on my wife. Strangely I don’t want to do that. At some point there isn’t going to be any choice, though, and lifestyle will be radically changed one way or another. I am not looking forward to it. I like the way we live, except for the part where it’s just plain becoming too physically difficult for me to manage.

We know there are no real medicines for MS, just supportive treatment. I have even gone looking to see if there might be a better choice for relieving the spasms than what I’ve got. Something that isn’t counter-indicated for long-term continual use, does the job, but doesn’t leave me feeling worse than dead in the morning. Baclofen might be the right choice here, but that means I have to talk the MD into a small trial Rx to find out. Frankly the local is out of his depth with this and the specialists are too busy to consult with in any reasonable amount of time.

Therein lies a tale. Summer is about to roll in here, and with it all the projects and fun – which it is doubtful I can participate in. I need to know in advance if there’s any chance I’ll be able to get on with things. There are many types of projects which can not be done piecemeal, and I’ve already got three of them rotting away because of the problems. I need to know if now is the time to give it up and change everything. You can not anticipate a future with no idea what the rate of decline may be. Tidying up loose ends and leading a less physically demanding life might be in order. Although that change will not be without a lot of stress when it comes.

And it will come.