The Nothing Report

I thought this was going to be even less than it is, as a week after undergoing the MRI the report still hadn’t appeared. Then it showed up Sunday morning, which seems odd but what the hell.

It says nothing.

It uses a lot of complicated words and two pages to say it, which is typical of the medical profession.

What it doesn’t say is “you don’t have MS that we can see”. It also doesn’t say “aha! THAT’S the problem!” It doesn’t even say “something odd there, we’d better run some more tests”. You know they’re really sick of you when they don’t want to run more tests.

What it does say is there are some minor disc protrusions that aren’t significant and one other anomaly that doesn’t really indicate anything. What it does say is “you are still screwed and we still don’t know why”.

Without a label to put on this thing there’s nothing to blame and no predictability to the future. “You’re going to continue to have bad days” isn’t much help. Well I can make a short cut there as I can’t remember when I last had a good day. This lack of diagnosis has gone too far, and it’s going to trigger more arguments.

Meanwhile on my left foot there are a couple of toes in trouble and I don’t know why. Too much time on my feet? Feet too tired to take the time on them? What do I do? I don’t know. There has been extra strain without having my wife around to look after animals and handle whatever she can. I doubt I can convince her we need less activity in our lives, or a different kind. Yet that seems the only thing that will bring any form of relief.

Yes, I’m still screwed and don’t know why and have no possibility of finding out why, much less doing anything about it. They’ll stick a generic “chronic fatigue” label on me and tell me to go away. That’s what every doctor has done so far; given up.

Maybe I should give up. Life has got too hard already and there’s no chance of that reversing.

MRIonday.

It was actually Thursday, but I save this stuff up for Monday so no one has to look at it.

It was actually Thursday evening, because once they get the MRI machine revved up they keep it going as long as they can. So I drop off the dogs and make the 2+ hour drive into the heat of the Big City. Really; it was like passing through the gates of Hell. Always warmer there than out in the high-elevation country where I live.

Tried to do some shopping on the way to the motel, but the stores weren’t having it. In fact I discovered that one of my favourite snacks is no longer carried by anyone. Why? Because the universe doesn’t like people being happy so it does everything it can to make us miserable, like taking away any small pleasures we might have.

Check in, watch some TV, marvel at how awful it still is and congratulate myself on not having any form of TV service for years now. Not only do I not miss it, there’s nothing to miss. Newton Minnow thought it was a “vast wasteland” decades ago. He had no idea just how inane it could become. 500 channels of pure video dross.

Eventually I wandered over to the hospital and made my way to the MRI department. After hours service is a bit dicey, as there’s no one around to direct you except the cleaning staff. Fortunately this hospital has really good staff at all levels. In fact I’ve only ever encountered one bad employee there, and she got fired. Well I barely had time to catch my breath (literally) before it was time for the test.

Turned out they were going to use the dye, which explains why they tested for creatinine; to make sure my kidneys work. They do, after a fashion. Then into the machine!

Now, they warn you about it being claustrophobia-inducing. No problem. They warn you about the noise. No problem, although the ear plugs they give you do little to alleviate that situation. They warn you about having to lie as still as possible for an hour. Ah, a small problem when you have muscles that act independently, but I can cope. They don’t warn you it’s bloody boring!

Beep! Boop! Tweet! Ratta-tat-tat! Gronk! Gronk! Zing! Loudly. For half an hour. Lie still? Kind of hard when the whole machine is shaking from the noises it makes (actually the noise is from the shaking). Then they stick the dye in and do it again. I’m pretty sure my hearing hasn’t recovered fully yet. There’s room for improvement there, as the noise is a result of vibration induced by the magnetic field. In non-engineering terms, the thing is trying to shake itself apart.

So we have this test which manages to be annoying and boring at the same time. If that isn’t a triumph of technology, what is? In fact it’s a metaphor for society as a whole. One which can be extended to the results which are neither forthcoming nor positive. I expected I’d see them come up on my e-health report, but not a word so far. Well, it is the weekend. When I finally do find out what they found out it will probably be nothing. I have every confidence the trip was a waste of time, effort, and money – just the same as always.

Anyway I didn’t sleep well that night. Messed up schedule and all that. I could have taken a pill, but didn’t want to make the drive back while hungover from the medication. Instead I got up and got out of the city and got back and … failed to get a nap in. Now I’m feeling extra sleep-deprived which I already had enough of to begin with.

Also I’m on tenterhooks waiting results I’m pretty sure won’t be helpful.

The city may be hell, but life is limbo.

Monday

This is the weekly ‘health’ report so you’d best skip it.

If you think you’ve got it bad, it could be worse. A friend of ours … well her son is dead now. Disappeared Friday night, found dead Saturday. The why and how of it don’t really matter compared to the horror of it. He was young and should have had a long and wonderful life ahead. Now … I don’t know what’s keeping her together. I can’t even imagine having to deal with such a thing.

So I’m not wallowing in self-pity today as I usually do. I’m just thinking clinically about the increased symptoms. I was taking a close-up picture last week while standing upright and noticed how hard it was to keep the subject in focus. Took me a while to realize it was because I was wavering back and forth; I can’t stand still anymore. Then I tried to take a picture from atop the scaffolding that remains set up by the shed I have not yet finished after five years. Got up on it with some difficulty, and had to come right back down. For some reason the added height made my vertical instability much, much worse. Try explaining that to a doctor.

Anyway this week it’s all about the trip to the Big City and the MRI. I’m hoping it does show something because I’m tired of having symptoms with no diagnosed underlying cause. Things keep getting more difficult to do. Meanwhile my wife has had to change her ticket to “open” because she has no idea when she’ll be able to return from dealing with her unfortunate sister.

Yet we are not having to deal with anything like the tragedy this post began with, so we’re not so bad off.

Monday, MS, and Moskvitch

In a bizarre turn of events I got a sudden appointment with the neurologist whom I refer to as Dr. Moskvitch because as with all the others I can’t remember his actual name. (Some of them suffer worse fate than to be associated with a Russian car, believe me.) So there I was, about a week after going to the big city, going to the big city a few days before I was to go to the big city. Did you get all that? This was to be a ‘short’ trip in that no shopping was scheduled; just drive down, see the man, and come back. Oh foolish we are to believe anything could be so simple.

I left after 10:30 so I could grab the mail at the post office post-distribution (they’d be shut by the time I got back). No problem; three hours to get to the appointment. It was a lucky day so far as papers I’d been expecting showed up, as well as papers my wife had been expecting and part of an order I had outstanding. All good. I got a two-for-one deal at the bargain store, and picked up another deal that will be subject of its own post later. Everything going well with little effort on my part. That’s the way I like it.

A few showers on the way. Nothing serious despite the threat of T-storms in the forecast. The trip is long, 135 Kms, and it takes over two hours. I’m going to stop once in town, then roll on down to the office. No problem. Park across the street, money in the meter, cross the road, up ten steps … and be ever so glad the elevator is right there. Maybe it was the 30°C temperature. Maybe it was two days in a row previously mowing lawn. Maybe it was just a bad day. I barely made it. The office was right next to the lift on the 3rd floor, I checked in, sat down, and nearly was asleep by the time my name was called. Maybe 5 minutes. At least I got to catch my breath.

We went over the history. It had been 3 years since he saw me. Lots to cover, nothing improving. He poked and prodded and hit me with a hammer. I pointed out that the adrenaline from being wound up for the visit was showing me at my best, rather than typical. We talked about possibilities. He decided the MRI was a “might-as-well” because it would rule out MS or other things or perhaps show them up. It’ll be a couple of months.

The bad part is all the other things he (and indeed the other specialists) could think of all fall under the same category: no cure, not much treatment, going to get worse, do the best you can. I know things that will help, and they are not likely to come about. I’m sort of trapped in a lifestyle which I already have difficulty accommodating. At some point it will just be either “can’t do it” or sudden failure and I know it. It’s hard to explain to a non-sufferer what it’s like to feel yourself losing yourself.

So in disappointment I went home. It was late when I left and I fueled up and got some food and drove back in occasional showers, getting home after 6:00 PM. Just about time to take some pills and go to bed and listen to the storms probably starting more fires (something that keeps me on edge). Lots of pain. My feet hurt up to my knees, for example. Stayed awake for hours, took more pills trying to numb it. Woke up after a few hours – more pills. Repeat. Get up in the morning feeling not improved and begin replanning the day. Such is life from now on.

Now it’s Monday and guess what? I’m going to the big city again. This time to take the wife to the airport so she can have the unenviable flight to England to look after her sister with Alzheimer’s and I stay overnight to get another test tomorrow – and then drive back home to cope on my own for three weeks while she’s gone.

This is all too much for us. I know what needs to be done but she’ll never agree to any of it because she loves the life so much. Unfortunately it is me who enables the life, and that is becoming impossible. I don’t know if an official order from a doctor to stop and change would help convince her, but I’d like one all the same.

I need to go back to my photographic distractions and pretend this isn’t happening. Here’s a picture of a longhorn beetle, for whatever reason.bigbug

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.

The Great Disaster of ’18: a Preface

I have made not-so-subtle references to this in previous blogs, and it’s bound to come up again. I’m not keen on talking about it, but it has had such a significant effect on my life that it can not escape mention. Herewith I will give a small insight into just how bad it was.

For one thing, it cost a lot of money. That isn’t the worst of it.

For another, it ate up a lot of time. That isn’t the worst of it.

Aspect number three would be the lost potential, but that isn’t the worst of it.

In terms of ‘things’ gone … well, imagine a room with 20 Nikon SLRs plus many others, now all gone. Now understand that was a drop in the bucket of the contents of a single room, and there were a dozen such rooms.

The second to the worst aspect of the Great Disaster of ’18 is the innumerable things that should have been there that just weren’t anymore.

The worst aspect was the loss of personal history; like having most of your life erased from existence. Only the memories now, and as one grows older those are not so reliable as the many aide-memoires we take for granted every day. It was the single most disturbing event in my life.

Ongoing

It was March 2 when the depression hit. The usual attempts at remedy failed, day after day. And then the old axiom about “just when you think it couldn’t get worse …” cut in as the physical disability flared up. That was a week ago and it hasn’t eased off either.

There are pills for it. So far they’ve had no effect. It’s bad enough having to go out and do things when you don’t feel like doing anything. When you add to that the need to lean against a wall and wait for your strength to catch up every time you get out of the car it’s overwhelming. Especially when the strength doesn’t catch up.

Putting off what you can put off until you feel up to it feeds the depression: “I should be able to do these simple things, but even those I’m mentally up to I’m not physically up to and if I keep draining myself …”

There’s no point going back to the doctor either. They order tests you have to wait six months for and will never see the outcome of. In fact there are two which were supposed to have been ordered which never made the schedule. They prescribe pills which don’t help you function but make you sleep. Well if I could lay around and do nothing there wouldn’t be a problem.

At this point there’s no end in sight. Look at the forecast. Try to grasp some straw of hope for the future. There isn’t one. What keeps you alive is the lack of motivation and ability to alter the state. A Catch 22 of depression and physical incapacitation. And now it’s warmer and wetter so the coughing is worse.

All I ask is a tall ship and a star to steer her by. – John Masefield

How does it feel

Oh Bob you surely knew.

Ignoring the unexplained stabbing pain in the back of my head (lower left side), I’m still wondering about the several minutes of truly odd sensations this morning just after bringing wood in that felt rather like cardiac fibrillation (five cardiologist have told me I’m fine) followed by some arrhythmia-like feelings which are continuing. Not sure if this is connected with the 5 mg of cyclobenzaprine I had to take last night or not, but that has never affected me this way before.

Which is a strange way of introducing the subject of how difficult it has become to go on living the life I do. In short there are too many demands placed on my dwindling abilities and energies and there’s no way to change it. Not even a large infusion of cash, known for handling so many problems and reducing them to nil, would help.

What would help I can contemplate but not be sure of. I can not achieve it or even experiment with it without dire consequences, and again mere sums of money would not ease the difficulties.

The details are irrelevant. For purposes of understanding you need only try to imagine this: throw away your current lifestyle entirely, and create a new one out of nothing.

There are agencies which will help you overcome health problems such as losing a leg or being a drug addict or even a combination thereof. There are organizations to get you out of bad relationships. There are even people willing to assist with getting runaway finances under control. But when the problem is that you no longer fit your own life there is no one willing or able to help you establish a new one. When it’s simply a matter of “I’m too old/infirm to manage now” but you appear to be well and able you’re up the creek without a canoe, never mind a paddle.

Also I’m worried about the huge number of typographical errors in my own writing this morning (which I have corrected). A clear sign of neurons not firing correctly, and that says I’ve had another TIA – probably going with the weird sensation.

Does any of this make sense? I don’t know.

Let’s NOT talk

It’s trendy lip-service for mental health day.

It’s pretend people saying we really must do something about depression will do something about depression day.

It’s all those celebrities saying they have problems to will somehow magically remove the social stigma of mental illness day.

It’s this campaign is 100 percent bullshit just like all the others day.

Really: what the hell is the point? You can’t be stupid enough to believe that dedicating one day a year to talking about any problem is going to help in any way. If you were you’d be unable to read and understand these words.

To truly affect any improvement would require many changes in society and the medical profession. That is not going to happen. It never has, and it never will.

There will be calls for legislative change which won’t come about. Demands that crazy people be treated as normal, while normal people fear they will be treated like they are crazy. There will be all kinds of things, words mostly – but also some deeds.

In the end there will be no difference in tomorrow from today.

No one is really going to suddenly understand what you are going through. No one is going to come up with an amazing instant solution. That’s all pretend. It’s make-believe. It’s a fantasy to make others feel good, not a reality to make sufferers feel better.

Shit you might as well have an Everybody-commit-mass-suicide Day while you’re at it, as the false hope proffered by this fake effort will only shove those suffering further into their personal hell once the realize it was all just another lie.

And fuck you if you think this isn’t true.