Okay, so they’re food trays – but it doesn’t take much imagination to see them as character sheets with color-coded panels. Image by HANSUAN FABREGAS from Pixabay

I get asked every now and then how I’m doing, same as everyone else, but there’s a difference since I am officially disabled. I’ve always resisted talking about my physical condition and medical problems in any depth here are Campaign Mastery, though I relented a little in Dice & Life: pt 2. But recently I realized that doing so, and couching it in game terms, would benefit GMs everywhere by enabling them to better role-play disabled individuals in their games.

So I’m not posting this for sympathy (though I’ll take any that comes my way); this is using my personal situation as a gateway to understanding for others.

The Original Injury

I don’t know for certain when and how I got injured. It was years of occasional suffering before the problems were even properly diagnosed, and it’s conjecture that they happened at the same time, in the same event.

Nevertheless, I know the incident that I blame – when a boss decided to relocate the family business out of the cellar under his shopfront to a set of rooms on the first floor, I was required to take carry of those ginormous piece-of-furniture sized up the four flights of stairs from one location to the other. I made it up three and then my back gave out on me.

Even with that said, I had to acknowledge that I’d had back trouble in the past, and recovered, and this could have just been a repetition or exacerbation of old injuries. I may blame this situation, but that doesn’t prove me correct. That’s why no lawsuits or compensation claims were ever filed – I can’t prove anything.

So, what were the medical conditions that were ultimately identified?

This image is based on an illustration uploaded to Wikimedia Commons and licensed under the Creative Commons Attribution-Share Alike 3.0 Unported license. I consider it a derivative work of the illustration and hence bound by the same license terms.

Back

Two of my vertebrae look like the tops of wooden stakes pounded into hard earth with a mallet – one at the top and one at the bottom. The disc in between is torn, and turned inside out, but still wrapped around the spinal cord. The interior of a disk has a texture something like that of sandpaper; this disk is now flapping around and free to abrade the muscle wall. The spine is unable to fully support my weight, so the back muscles have to do that job, something they are not really designed to do.

Knees

The synovial fluid, which cushions and lubricates the joints of the knee, has been squeezed out from between the bones in both knees, pushing the kneecap forward and up, and permitting direct bone-to-bone contact (and pinched nerves) when walking and especially when climbing or descending stairs and slopes.

But, to be honest, this was momentary pain at most; it was the lower back that was the real problem.

Surgical Intervention

The possibility of surgical correction of the spinal problem was discussed seriously at the time of diagnosis. This would involve removing the exploded disc and fusing the two vertebrae together, and possibly a little bone carving to remove the worst of the “bloom” from the two ends. The problem was that part of the disc was still wrapped around the spinal cord; the surgeon (one of the best in the country) said that at best, there would be a 50-50 chance of paraplegia. With those odds, we agreed, waiting would be the smarter course of action; techniques improving all the time, and the surgery itself was becoming more routine; by the time I reached the point where I needed a wheelchair half the time anyway, the odds would have shifted to something better than a 50-50 chance of a full recovery, with the alternative leaving me no worse off. If I looked after myself, I might even make it to 20 years post-diagnosis without needing the surgery at all.

Management

Over many years, I slowly learned to manage these problems, and began to actually recover somewhat. That management consisted of knowing how far I could go before the pain began to interfere with my ability to perform ordinary tasks, and how much further I could go before actually making the conditions worse.

It was necessary to view ‘conserving my capacity’ as an investment in being able to do just a little more tomorrow; compounding benefits meant that my capacity improved notably over time.

When first diagnosed, I had the mobility of someone 100+ years of age. After three years of recuperation and careful exercise, that started to improve; over a five year period, it became something close to normal – up to a limit of activity. Then, that limit began to increase, ever so slowly. Half-a-block of walking. A full block. Two blocks. Three blocks (if not repeated too often).

Exceeding the limits

There were set-backs along the way. The usual cause was doing too much because some task needed to be done. The occasional social gathering was another. From those experiences, I slowly pieced together a pattern.

Go just a little over the limit and I would be crippled for a day or two, three at the outside. And often a little stronger when I did recover. (Stage 1)

Go just a little over that limit, and I would be crippled for a week or two, and a little weaker, more prone to re-injury and able to do less, when I recovered (Stage 2).

A little beyond that limit, and the setback was 1-3 months of crippling pain and a pronounced setback in capacity for a year beyond that – just to get back to where I had been (Stage 3).

Beyond that lay the boundary of not being able to physically continuing to do whatever I was engaged in, no matter how willing I was. It’s really hard to walk when your back won’t hold you up you know? (Stage 4).

And, if I pushed on (after a rest) after reaching that point, I began shredding what progress had been made (Stage 5).

The Grand Tour To The Sea

On one occasion, my brother and sister-in-law were visiting Sydney, and she had never seen it, or parts of it, before, so the family gathered to give her the tour. We took the Hydrofoil across the harbor to the beach; and walked down Manly’s shopping district. By the time we got to Manly, I was at stage 2. By the time we had walked those two blocks and started down the beach, I was approaching stage 3. It became obvious to some of the family at this point that I was struggling so they called for a break and started discussing lunch, just as I got to to stage 4. (Part of the problem was the pace being set by my Sister, who seemed oblivious to my situation – she was quite apologetic when she found out).

The Hydrofoil terminal was now so far away that I would not have been able to walk all the way back to it in one stint. It was decided to walk about half-way back while looking for somewhere to eat lunch, which would give me a further chance to rest. Despite that initial recovery time, I was beyond Stage 4 by the time we found somewhere, recovered to Stage 3 while we ate, but was again beyond stage 4 by the time we reached the Hydrofoil. When we got back to Central Railway Station, I was fully in stage 5, and had no choice but to leave the family and go home.

I spent 12 months in constant pain after that event, and another 4 years just getting my recovery back to where it had been. It was a very memorable lesson to learn, and I never pushed my limits that hard again.

Such were the problems when I wrote Dice & Life Part 2 back in 2013-14. While they were restrictive, even limiting, they were carefully managed, and adherence to that management strategy was my #1 priority, so the long term wasn’t looking too bad.

There were times when it was difficult; I was berated by my sister-in-law for not dancing at a cousin’s wedding. It wasn’t that I wouldn’t, it was that I couldn’t; the pre-reception events and reception up to that point already had me at stage 3, dancing would have put me through to the point of collapse (stage 4) or beyond.

Over the last 8 years or so, a more difficult and complicated situation has arisen, with some old problems and some new ones now interacting to make life more difficult. In a nutshell, though, I no longer have to worry too much about the limits I described above – I have a whole new set of limits that don’t let me get anywhere near even stage 2 of the old ones.

More Recent Problems

A complex set of eight interacting issues slowly developed. Any one of these on its own could be easily managed; it was the interaction that really makes life difficult.

Leg Cramps

Maybe 20 years ago,. I had a brief problem (lasting a year or so) when I experienced extreme leg cramping regularly. These aren’t the run-of-the-mill cramps that everybody gets, now and then; they were strong enough to dislocate bones in my feet and split the right calf muscle lengthwise. Heck, I even (only once, thank goodness) had a cramp in the muscles that control the movement of my right eye!) To ameliorate these, i was prescribed curare (yes, the South American toxin), and the problems slowly went away.

Magnesium & Potassium Salts

About eight years ago, they resurfaced; what curare I had left was well beyond it’s use-by date and limited, so I went to the doctor for a new prescription. Instead, he felt it better to try and address the cause of the problem rather than just the symptoms (I was all for fixing the cause, but would have preferred symptom relief at the same time). He recommended that I try taking Magnesium salts, as that was often the cause of leg cramps where shortage of ordinary salt in the diet has been ruled out.

That helped, for a while. But the problem became progressively worse. These days, i know that my biology is especially poor at ingesting magnesium and potassium from dietary sources, and that I need to supplement both from time to time – the first with tablets, and the second with a banana every second or third day. But that’s nowhere near the whole story on this front.

Spinal Damage

Another part of the story lay in the old back injury, more specifically, some low-level spinal damage where nervous impulses were crossing over from sensory nerves transmission up the spine to muscle-contraction nerves down the spine. These would create regular twitching and tendons locking up into cramp. Many of these did not have specific pain receptors, so there was no signal that anything was wrong, until they reached the point of collapse, causing the whole muscle into extreme cramp.

A different prescription, and again it seemed to help. But it also got me referred to a podiatrist, who determined that both lower legs were constantly on the verge of cramping, so locked up were the tendons and ligaments. This was a problem because they locked by filling with blood, and if they stayed that way for too long, the blood would clot; those clots could then break up and cause heart attacks, strokes, etc. Worse still, this blocks or restricts the muscle’s nutrient supply; it can actually die causing all the problems that you would expect.

Dry Needling

Enter a new therapeutic regime: dry needling plus regular home massage. The first uses the tension of the muscle against itself, creating twitches that relax it. Occasionally, the acupuncture needles used get bent by the force of the muscle’s response; in my case, several of the needles came out bent by angles of ninety degrees or more. After each such treatment, conditions improved and the leg cramping became less frequent.

Home Massage Therapy

The second treatment basically means, “rub your legs until you find a sore spot, then push it into the leg as hard as you can for as long as you can, or until the pain starts to go away, then release and repeat.” If you can get the “big stuff” with dry needling, this helps a lot with whatever’s left.

Overdose

Still another part of the problem is that while a shortage of Potassium, Magnesium, or Sodium can cause cramps, so can too much of the first two, and that can last considerably longer.

Prognosis

Overall, the incidence has gone down from three-to-four debilitating leg cramps per night, to often none at all. Adjustment s to sleeping posture so as to avoid triggers have helped. The problem will never completely go away; its something that has to be managed, day-to-day and week-to-week. I went almost all of last summer without a leg cramp; this summer hasn’t been as clear of events, but there have been extenuating circumstances.

Toes & Ankles

Each leg is different, with it’s own idiosyncrasies, in terms of those triggers that I mentioned. The right foot is very sensitive to the angles of the ankle, both in the forward and side-to-side planes; bend it just a little too much, or too little, and a stiffness begins in the calf that eventually becomes a full-blown leg “mega-cramp”. This is especially problematic in winter, when the weight of blankets and such tends to push the foot one way or the other while sleeping.

With the left leg, it’s the toes that are the major trigger, and these usually result in a cramp of the insole of the foot or the bottom of the foot. These are often more easily treated and less enduring than the “mega-cramps” but it can be a problem when they occur at the same time – one wants the toes to go one way for relief and the other wants the opposite!

Prognosis

These are all bound up in the same causes as the leg cramps. Often, they are triggered by the leg cramps or vice-versa. There have been times when I’ve had two cramps in my left foot and a cramp in each leg, all at the same time. That’s painful, and hard to relieve.

Management and treatment were successfully reducing the frequency and intensity, at least until recently, and I have every reason to hope that once some of the current circumstances abate, progress will be resumed.

Feet

For the past few years, my feet have had a problem with swelling, especially at night. This comes from sitting for too long, more than anything else. It’s not a huge problem, which is good, because the primary chemical treatments are contra-indicated by the leg-cramping problem.

Footwear size

Where it does become a problem is with footwear. If I buy something that fits when my feet are not swollen, it will be a size-and-a-half too small when they are, and vice-versa. Complicate that by the fact that footwear. becomes looser when it is broken in, and you have a real problem in knowing what size to shop for.

My primary preference for footwear. is a specific range of thongs, which Americans call flip-flops. These are the only product I’ve ever tried that fitted my perfectly from the moment I first put them on. They are a cheap Chinese import that are not always available; I bought two pair the last time I saw them, and have literally worn holes in both pairs over subsequent years. Their big advantage is that they are more elastic than most; they stretch when my feet swell and shrink back when they don’t.

Current Primary Footwear

The pair that I am most frequently using these days are a different design. They have only just broken in, going from too tight to too loose; I now have to be careful as they threaten to come off my feet every time I climb stairs. And, even at their best, they are not as comfortable as the preferred ones.

I’ve bought other pairs in the “right” size only to toss them after a single wearing – uncomfortable, or they just had no grip, or both.

Other Current Footwear

I have a pair of rubber sandals that are too small by at least a size and not yet broken in. I can only wear them when my feet are not swollen and even then, only for short periods. I hope that they will become more useful when breaking-in is complete.

I have other footwear. – Ugg boots for winter, some steel-reinforced boots with arch support – but they are hard to put on for reasons having nothing to do with my feet. I use these mainly when it’s wet out.

All these, for a man who (for many years) had one pair of boots and one pair of formal shoes, just shows how simple things that most people take for granted can end up costing a lot more when you’re disabled.

And it also shows that even such a simple thing as “what shoes should I buy” becomes something that needs very careful planning and management in that situation.

Knees II

My right knee continued to slowly deteriorate, and a couple of years ago it became clear that a knee replacement, long mooted as a possibility, was something that I would require at some near-future point. That was looming to be my next big healthcare challenge, for a while. Management of the knees was beginning to complicate the management of the leg-cramping situation, and vice-versa, for quite a while.

It’s still part of the picture, but it’s now debatable whether or not it is the focus. I’ll get back to that in a moment.

Neck

I woke up one day with mild chest pain, acute stabbing pain in my neck when I tried to turn my head to the left, and numbness down my left arm. You can imagine my reaction, but by the time I got to the phone to call an ambulance, the chest pain had stopped. Warily, I went to see my Doctor instead, who sent me off for a battery of tests and referred me to a cardiologist, who ordered still more tests. Results: my heart beats a little too fast for its own good, my blood pressure is right at the peak of where it’s safe for it to be (but not enough to require intervention) and everything else cardiac related is normal.

Ultimately, it was determined that a spinal disc in my neck had slipped and that there were the beginnings of arthritis in the two joints above it. Once the disc was massaged back into place, no more problem – for now.

Except that the disc in question likes to play walkabout – the next time, it slipped the other way, and the numbness was down my right side – no pain that time, except when I turned my head.

Putting the disk back where it’s supposed to be is now a part of my daily routine. Until that arthritis becomes a problem, that seems to be all that’s necessary; I have had only one recurrence since this became my practice. So this problem, at least for now, is managed.

Hip

About 25 years ago, I began having strong hip pain. X-rays were taken and examined, and revealed that the head of the femur was pitted; a diagnosis of a mild case Avascular Necrosis was recorded, but my Doctor at the time found that there was a discrepancy between the pain being experienced and the state of the femur at the time. He felt that there was a good chance that the lining of the hip joint had worn, permitting nerves to be pinched, and that surgery was not yet necessary; he gave me injections of cortisone in both joints, and as a result, I was pain free for about 20 years – which rather confirmed his diagnosis.

When the pain began to return, some five years ago, I was sent for a fresh batch of x-rays, and referred to a specialist surgeon. His diagnosis was mild Avascular Necrosis, requiring an eventual fill hip transplant, costing thousands of dollars – not because of his fees, but because his preferred anesthesiologist and surgical support team weren’t covered by government support. The alternative would be to wait in a queue through the public system, possibly for as much as six months, once symptoms became acute.

Since I could see no difference between the image he showed me and the one taken twenty years prior, I wanted to try another set of cortisone injections, but he not only would not hear of it, he refused any other form of palliative treatment or care. To say that I was underwhelmed would be an understatement. But, thereafter, whenever I raised the subject with my doctor (a different one to the first mentioned), all she would say is “you need a hip replacement”.

My attitude was (and is), “Please try the palliative injections. They may not work, but equally, they may. I accept that I will need a hip replacement eventually, but I don’t know that the day has yet arrived.”

So, here we are, five years later, and every time I climb stairs, I can hear and feel bone grinding on bone in my hip. There is no pain from that, and there are no signs that the hip is getting any weaker.

I’d go back to the first doctor, but I think that he died a couple of years back.

More on this in a moment.

Sleep/Exhaustion

Everything listed so far contributes to poor sleep – getting woken up every 90 minutes or so by something or other, needing to spend between 10 and 30 minutes sitting up or walking around or some combination, then back to bed and try to go back to sleep.

I’m pretty good at not needing a lot of sleep – I get by with 6 hours or so a night for long periods of time. I used to be even better at it, which has come in handy from time to time!

But night after night of four hours or less? After about six months, that gets to be too much, even for me. So fatigue and exhaustion – to the point of not remembering to take medication – is a slippery slope that has caught me out a couple of times.

The leg cramps are – were – the driving and dominant factor. When they abate, I get enough sleep, and all is well. The chief difficulty lies in these other conditions making it hard to avoid those leg cramps.

At least, that was the case until the interval between Christmas and New Year, 2022-23.

Abductor Muscles

Returning home from my Mother’s, where I had holidayed, I was walking down the railway station platform with my luggage trailing behind me when I felt something go “pop” in my thigh. It instantly became extremely painful to walk. Later, I found that I could no longer lift that leg under it’s own power while sitting, and putting any weight on it brought instant pain.

I gave it a week or so, noticing some improvement, and then went to see my doctor early in the new year. She immediately assumed that my hip joint had failed, and “You need a hip replacement, urgently”. No tests of any kind, no examination. I was convinced that I had simply strained a muscle, and wanted some input from a physical therapist on exercises to help the healing process. Her response: “if that’s the case, it will heal on its own in six months or so.”

Underwhelmed again. As usual, her primary focus was on my Diabetes and its management, and completely ignored any suggestion that anything else might complicate that.

It was that “some improvement” that I found compelling; if the doctor was right about the cause, there would not have been any improvement. And, over the next 6 months, with no help from my doctor at all, there was substantial improvement, to the point where most of the time, it was as good as it had been – and then a setback.

Knees III & More Cramps

Physical activity in that six-month period had been restricted and difficult. As I recovered, it improved; I was following the same management approach that had been so successful with my back problems – learn you limits and only exceed them, judiciously, when you absolutely had to.

My knee gave out on me. Walking with the hip problem was inducing a twisting motion with each step, and that was something my dodgy right knee simply couldn’t cope with. At the same time, because I had trouble putting my weight on that leg, my left had been left to do most of the work, and started to act up as a result – more leg cramps, more disrupted sleep, etc.

The knee became worse than it had ever been, and that began to put additional strain on the hip. It was a classic catch-22.

Suddenly, my hip went back to being much worse, as well, as a result of modifying my gait to accommodate the knee injury.



I took a photo of my knees (on a fairly good day) while sitting down, and did some sketching over the top. It might not be 100% anatomically correct, but it’s pretty close. The Leg, as usual, is lurking in the background (see below). It shows the displacement of the kneecaps, the potential for pinched nerves and bone-on-bone contact, and how badly the right knee swells on even a moderately-bad day.

I looked into the surgical options, because that’s what my doctor kept telling me was necessary. What I found was that when both have to be replaced, the vast preference (for many reasons) is that the hip be done first, even if it was the knee that was the primary limitation.

But the restrictions that were imposed following a successful hip replacement were more severe than the restrictions that the existing hip problem were forcing on me. Conclusion: I might need one eventually, but not yet. The knee was a far higher priority.

Additional restrictions on sleeping positions made the leg cramps a recurring factor, too. It was like a conspiracy of body parts.

Oh, and one more thing: The knee swells when I use it in discomfort. That puts pressurure on everything else, forcing it into closer proximity, and increasing the likelihood and frequency of pinched nerves.

“The Leg”

It has now reached the point where I simply refer to the whole biological component as “The Leg” – “The Leg is good today” or “I’m having trouble with The Leg at the moment.”

Nevertheless, despite the setbacks, progress continued to be made. I am now much fitter than I was six months ago, and – at times – can even move around a little without the use of my walking stick.

This is good, because about 4 months ago, the other shoe dropped.

The other shoe

That’s when I was given 90 days notice to vacate the premises that I am still dwelling within – with the owner’s consent, I hasten to add. This created three challenges to be overcome.

The first was financial – it was going to cost thousands of dollars to move, and I simply didn’t have the money. It took a month to solve that problem.

The second was packing, given my physical limitations. For three months, I worked daily on the task until I could no longer stand up – pushing my limits to the extreme. That contributed a lot to “The Leg” and its issues. About 2 weeks ago, i reached the point where I could be packed and loading a moving van in 48 hours, and was officially living out of cardboard boxes. With that, and assurance from the owner that I could now “take as long as I needed”, I’ve backed off the pace (but not stopped entirely).

That has led to actual improvements in “The Leg”, noticeable even in only that short amount of time. I am still disabled, limited in what I can do, restricted in how much of anything can be achieved, but I’m better than I was.

Overall Condition Analysis

Okay, so that’s the medical history that’s relevant, and quite a lot of it there is, too. But it’s all context; now we get to the part that might actually be useful to GMs out there – overarching analysis and specific impacts. First the analysis:

Pain-free days

I have very few completely pain-free days. I had one in 2022, and another in 2021. There were three in 2020, and three more in 2018 and 19.

Eight in six years.

And every one of them has been a trap – it’s so easy to do too much when you don’t feel restricted, and then spend the next week or more recuperating from “having a really good day”.

Pain management is a constant, and all the more so when there’s no pain to manage. This takes a little of the shine off even the best days, health-wise.

Let’s say you have three conditions, each of which has a 5% chance of not giving pain on a given day. For a fully pain-free day, you need all three of them to come up trumps.

5% x 5% x 5% = 0.0125%.
x 365.25 days, times 6 years = 0.2739375 – well, I’ve had more than that.

Correction Factor:

6 / 0.2739375 = 21.9; cube root of 21.9 = 2.7978; so 5% x 2.7978 = 14%.

Which yields

14% x 14% x 14% = 0.2744.
x 365.25 days, times 6 years = 6.013476 pain-free days.

That gives you some indication of severity.

Good Days

In general, though, that’s an oversimplification. Most days, there is an ebb and flow, some parts of it okay-to-good, some parts of it less so.

What is a good day? Well, when only one of the three conditions is acting up, and that one mildly, or when two of them are giving trouble but both are VERY mild. Or when one problem gives way to another, with at least half a day that’s pain-free in between.

With some basic assumptions (Very mild = same probability as no pain, mild = twice this) and compounding subdivisions of the day of approximately equal size (regardless of the length of that day) I could calculate it out, but that says nothing about the validity of those assumptions.

Instead (and I don’t remember them or count them, not like the pain-free days) – there are three variations on a good day, each of which is going to be more likely than a completely pain-free day – let’s do some guesstimation: 6 pain free, x 1.5^2 = 13.5; x 3 pathways = 40.5; plus interaction potential x 3^2 = 364.5.

That sounds about right. Around 61 a year, or one in six – except that they will tend to cluster together, so it’s not a random distribution.

Today is a fairly good day (so far); aside from one leg cramp (moderately severe) last night, and some moderate pain this morning, and the occasional brief burst of pain during the day, it’s been excellent. So, not perfect, but not as bad as yesterday. But I have to do some shopping in a few moments, and that could be enough to push it down to being a “Fairly Good Day”.

Fairly Good Days

A fairly good day is fairly similar, except that whatever physical problems do occur will be that much more severe and more painful. Or more frequent.

A day – when you’re counting 3-10 minute bursts – is a LONG time. 144-480 bursts. An average of about 312. Adjust for only 18 out of 24 hours being relevant to get 234.

That’s 234 chances for something to be seriously wrong or seriously painful. Most of the time, there’s little or no chance, but 10% or so of the time – call it 25 times a day – to only have minor issues? That’s a fairly good day.

I have probably about as many fairly good days as Good Days. After all, it only takes one medical issue to be really bad that day or even only for half the day, to push it down into a lower category

Bad Days

The remainder of the six years are evenly divided between Bad Days and Really Bad Days.

It’s a bad day when one issue or another actively interferes with your day, forcing you to plan around it. It might not be for the whole day; it might be first one thing and then another. It doesn’t matter.

Really Bad Days

Really bad days are the ones where two or more are a serious issue for most, if not all, of the day, to the point where anything beyond the daily routine risks taking you from Stage 3 to stage 4 or 5.

Broad Impact

On a really good day, you can do 3 major tasks lasting up to 45 minutes each. One might be sweeping the floor, or doing the laundry, or going shopping. Every additional non-sedentary task pushes you toward either today or tomorrow being a worse day than today by a step. Also note that some tasks you might consider sedentary require leaning forward to the monitor – digital art for example – that can push it out of that category. See also “sitting down”, below.

On a good day, it’s two major tasks.

A Fairly Good Day is one major task.

A Bad day is no major tasks without incurring risks.

And on a Really Bad Day? Any major task is certain to impact on you for several days or weeks. Defer if you can, work around whatever the problem is if you can, give yourself permission to rest if you have to, do only half the job if you have to, and make up the difference further down the track.

Impact On Ordinary Activities

On top of those major tasks, I have a carefully-designed and structured daily cycle, that I vary only at extreme need. Even if there is some need to do so, I will try and work around it.

Before describing the impact on normal, routine tasks that everyone else can take for granted, I thought it would be useful to spell out that routine and the reasons for each part in the sequence.

Daily Cycle

There are ten broad parts to my daily cycle.

Get Up

“Or Not” is usually not an option. I can’t lie in bed all day without incurring leg cramps or back pain or both, and the day does rapidly downhill from there. If I’m really tired, I may be able to sneak an extra hour or two of sleep, but that can impact the tail end of the day.

Shower

This also involves a set sub-routine – I shave every second day, and in summer, shampoo. If I got very sweaty the previous day, I may wash my hair even though it isn’t due. Note, too, that shaving and washing your hair is a great way of restoring energy if you are seriously fatigued; there have been occasions when I’ve known already that I will need a pick-up later in the day in the form of a second shower and those activities.

In winter, unless I’ve been physically active enough to raise a sweat, I might do the washing of the hair every 3rd day.

I have to massage my neck until the disc locks back into place, and massage my back until it stops aching. I may need to rub legs and tired muscles, especially after a major cramp. There will also be a certain amount of stretching required, while the muscles are more pliable from the hot water.

I have to take longer showers than most people, because these activities are what enable me to get through the day.

Dressing

After drying off, it’s time to get dressed. This, plus the walk to and from the bathroom, are my first significant indicators of what the day is going to be like. I generally have to use my arms to lift The Leg enough to get it into underwear and pants. Shoes and boots can be significantly difficult, and socks even more so. I may have to get onto the bed, sitting up, bring my whole body around to get my feet onto the bed, manually lift The Leg at the need using my arms, and lean forward (putting strain on my back) in order to do so.

Medical Assessment / Planning The Day

By the time I’m dressed, I’ll have some indication of what sort of day I’m going to have, health-wise, and can plan the day around the major activities that are at the top of my to-do list.

2-4 hours

The next 2-4 hours are when I am at the best or second-best that I will be, all day. I’ll spend 1-1½ hours of that on some sedentary task (usually emails etc) and the rest on my first major task of the day, usually one of the more physically active ones. A medical reassessment at the end of that period informs the rest of the day.

4-10 hours

The bulk of the day is usually not as good or as productive at non-sedentary tasks, but on a good or fairly good day I can make room for one or two.

10-14 hours

After sitting for most of the 6 hours above, I am usually at my best or next-best physical condition. In summer especially, it is now significantly cooler and more comfortable. Time to have at the last major task of the day. Lately, this has been reserved for packing. On a really good day, I might be able to make a double-stint of it, especially if I can sit down for part of that.

If I’m really tired, I might need to take a nap in this period. That has even more catastrophic consequences on the daily routine, however.

14+ hours

That’s when my day starts running downhill. If I’m in any pain at all. Somewhere between midnight and 1AM I will usually get my second wind, going from fatigued to to alert to sleep. If I’ve taken a nap, or slept in, I might not even be feeling all that fatigued.

If I’m in any sort of pain, or if I’ve mashed up my sleep cycle, I can’t go to sleep until I again feel fatigued; I’ll just lie in bed until beset by a cramp. On days with an intact sleep cycle, that’s usually 3-4AM, sometimes 5AM; on days when I’ve gotten extra sleep, it might be 6, 7, 8, or even 9 AM. Anything past 6AM eats into the available sleeping time before the next day begins, and that can be both good and bad.

Good in that it means I will be more tired the next night and (hopefully) able to go to bed at some more appropriate time of night; bad in that a lot of recovery and recuperation take place while you sleep, so the next day everything will be that bit more sensitive and prone to pain.

Undressing & Getting Into Bed

Undressing can sometimes be as big a production as dressing was, but it’s usually simpler and easier.

When my muscles are especially fatigued from a hard day (a relative term, I must admit), simply getting into bed can be enough to trigger a major leg cramp. When that’s not the problem, I have to turn down the bed, manually lift The Leg up (I can straighten it, I just can’t bend it at the knee or lift it under its own power), pivot my whole torso and left leg to get them into position, adjust how far down the bed I am (I need my heels or toes to dangle off the end of the mattress) and then search around for a sleeping position in which nothing is complaining. That process can sometimes take 10 or 15 minutes.

The wrong position will trigger (a) Leg Cramps (b) Pain the next day (c) Pain in the limb overnight, enough to wake you (d) the slipped disc in the neck and/or (e) back pain the next day, sometimes longer. With that on your mind, it’s understandably harder to get to sleep – hence the need for exhaustion.

Sleeping

As the night unfolds, I will often toss and turn; it’s very rare that what was a good sleeping position stays that way. If I’m lucky, I’ll settle into another comfortable position, especially now that most of my muscles have relaxed, their job done for the day. Of course, sometimes something doesn’t get the memo, and a cramp will start building up.

Looking over that summary, I’m struck by how much of the day is spent doing things that could be characterized as resting, at least physically, just to be able to do the minimal amount listed.

I mean, other things that can be considered Major Activities include cooking a meal (if you have to monitor / stir something); changing the sheets; doing the washing up; taking the garbage out if there’s a lot of it; moving or cleaning a piece of furniture; washing the floor; assembling a bookshelf; changing a light-bulb; changing the smoke-alarm battery… It doesn’t take much to fully occupy the available slots, and then it’s a question of whether or not something is urgent enough to justify the risk of worse days to follow.

Specific Tasks

We’ve been drilling down through the structures of activities to reach the point of talking about specific actions. I’ve listed 18 of these, though some of them are cheats, perhaps. I’ll leave it up to the reader to decide what’s what, in that respect.

The one thing that I should point out before beginning is the physiological context. You have a knee and hip that have no power or strength and don’t like to change; a set of leg muscles that don’t like staying in the same position for too long; feet that want to be elevated; and a back that doesn’t like leaning, bending, or lifting.

Sitting Down

Time was when I could simply drop into a chair without a second thought. Those times are long gone. No matter which problem joint you’re talking about, slowly is much better than quickly. Either I have to use the walking stick for support to slowly descend into my seat, or I have to hold onto the table or chair or both.

I use an executive chair, so it’s on wheels, so sitting down is just the start; I then have to pull or push the chair into position with my one good leg and arms. Then I have to arrange my legs so that I’m comfortable.

Only then have I fully sat down.

Standing Up

Standing up is a production of leverage. Trying to hold onto the chair just pushes it away, leading to a fall – not good when your bones are suspect and a pinched nerve is easy.

Using the walking stick in one hand and the table in the other is usually the best bet.

There is always a protest of pain from the knee of The Leg. It doesn’t last more than a few seconds. The hip makes no complaint until you actually try to let go of one or more of your supports, when it refuses to move The Leg and refuses to bear any weight. That also only lasts a few seconds, and then I’m ready to try to walk.

It’s critical to ensure that I have my balance right when you try to stand up; if I don’t, I will almost certainly go back down, and bad luck if the chair isn’t there to catch me. The action of standing usually pushes it away when my legs straighten.

If I have to be off-balance, it has to be based entirely around my left leg; The Leg will not bear my weight on its own.

Maximum Time On My Feet

As a general rule, unless I’ve been on my feet for too long, I can stand on both feet without support – at least for a while. This maximum used to be 5 minutes, then grew to 10, 20, and now is somewhere close to the 30-minute mark. And that’s despite The Leg.

Walking

Walking is whole separate challenge, and often the biggest difference between the 2-4 hr time period and the 14+ time period. At first, there is pain from the Leg – both Hip and Knee with every step, and as much as I can do to hobble, even with the aid of my walking stick.

But, as I continue, the hip pain begins to fade, and then the knee pain moderates. Depending on the day, it might be that neither goes away completely, but it gets better. The better the day is, the more normally I can walk – but that’s a trap; it only takes one misstep to plunge one or both joints into severe pain. The secret is to take small steps – something slightly better than a shuffle – and to do so slowly, testing The Leg cautiously each time weight is put on it.

Changing direction or side-stepping is another trap that I have to be wary of. Neither the hip nor the knee like turning all that much, and I’ve already talked about the impact of the slightest twisting motion.

On a good day, or a fairly good day, I might not need the walking stick at all, even if my speed is reduced to a shuffle. On any other kind of day, I rely on the walking stick to a greater or lesser extent.

Whenever I can, as much as I can, I do without the stick, even though I may keep it close at hand. There’s a truism that says “use it or lose it” – I find that the more that I walk normally, the more I am able to walk normally. Of course, this only matters on “good” and “very good” days! But that brings me to my next activity:

Maximum Walking Distance

Another area of vast improvement over the years. At one point, it was 50m (164 ft), and then 20 minutes rest. Then it became 75m, 100m and 125m, while the resting period came down to 10 minutes.

What I realized, when things got to this point, was that the full rest wasn’t needed. 2-5 minutes didn’t restore full mobility, but it did give back 80% of it – at the end of which, another 2-5 mins gave back most of that 80%.

By 2022, I could manage a kilometer, occasionally one-and-a-half (0.6 – 0.93 miles). With the new injury, it dropped back to about 25m, and has now built up to about 220m – on a typical day. The nearest bus stop is 125m away – and I can usually manage that even on a bad day.

And that 80% rule still works.

Picking something up

With a knee that doesn’t like to bend, a hip that doesn’t like to change position relative to the torso, and a back that doesn’t want to lift, this can be extremely problematic. If I’m seated, I can lean down to my left while extending The Leg out for balance, with a little bit of difficulty, and moderate pain that doesn’t last.

As much as possible, though, I avoid this.

It’s had a major impact on my packing strategy – smaller boxes and more of them. Even so, there have been some boxes which are just too heavy – I have to repack one of those later this evening, because even though most of the contents are empty plastic containers, the cumulative weight is still too much for me to get to the table where I seal up the packed boxes. It’s most pots and pans, plus those containers. And bread-and-butter plates, and soup/dessert bowls.

Carrying something

Even the way I’m labeling the boxes is impacted – “Very heavy” I can barely carry, “heavy” I can manage with difficulty, and “light” I can carry with some ease – usually because they aren’t full!

It’s virtually impossible to use the walking stick for support unless you can carry the box / object one-handed. So a slow shuffle is called for – see Walking, above.

But there’s a way around that limitation, with my back doing so well – i have a sports bag that I can carry on my left shoulder. Walking stick in my right hand, and I’m fine – at least until I get to slopes or stairs.

Going down stairs

I actually don’t have a lot of trouble going down stairs unless the knee is especially bad. But I do have to be cautious of my balance – sometimes, The Leg isn’t quite where I expected it to be.

Going up stairs

Going back up is more problematic. If I can manage the walking stick in my left hand and the railing in my right, that’s the optimum configuration.

Momentum is a big thing – once I’m going up, it’s easier to keep going up than to stop and start again – but it’s not everything.

But now put something in my left hand – a shopping bag, or an umbrella – and the walking stick under my arm, and it gets more difficult. Even an empty cardboard box can be problematic. So this is something I’m very careful of, and one of the most strenuous activities that I have to perform regularly.

Going down slopes

Small steps are even more important on slopes, and caution concerning balance. This is prime territory for a pinched knee nerve or twisted knee response, especially since The Leg won’t usually be as far forwards as you expect. shuffle, shuffle, balance, shuffle, shuffle, balance… at half even my normal walking rate.

Going up slopes

Going UP slopes is even harder. Sometimes I can only manage s 3″ step forward. The temptation is to take a bigger stride with the left leg, but that’s a trap that leads inevitably to leg cramps afterwards. The steeper the slope, the worse it is.

Coughing & Sneezing

Coughing causes a spasm of pain in the right knee. Sneezing adds a stab of painful protest from the Hip. Afterwards, expect the knee to throb with a low-level of pain for ten minutes or so, intensifying the pain from any other activity.

Cleaning / Laundry / Cooking

For the most part, these are Major Activities, as listed earlier. But the can sometimes be done piecemeal. The problems are those already described, for the most part – picking things up, carrying them, standing up, walking, and so on.

Writing / Sitting

The position of the legs is critical to being able to do this for any length of time. Being seated all the way back in the chair is also massively important – leaning forward has led to chairs slipping out from under me, causing a fall.

Digital Art / Leaning Forward

I’ve mentioned this earlier, but focusing on small details on the screen demands leaning forwards, and that means putting my legs under the chair (where they don’t like to be) and leaning forward (where my back doesn’t like me to be). Instead of 2-3 hours of intense activity of this sort, I’m finding that only an hour or so is now possible at a stretch – more on good days, less on bad. This is just another factor in planning and management of my time.

Exhaustion

When in a good position, if I’m extremely tired, I can nod off – and for that reason, I bought myself a new executive chair for my Birthday this year, one with armrests on both sides, just to keep me in place. Unfortunately, the metal structure within the chair had a fatigue crack that snapped almost immediately, though I didn’t know that for quite some time – not until the right arm fell off.

So this now poses an additional danger that I have to be wary of. If I manage to get comfortable leaning to the left and back, I can sleep securely for hours – which can be a lifesaver if the left leg is on a cramping-fest. The biggest danger involved is getting so much sleep in the chair that it then becomes hard to get to sleep when I awaken and drag myself off to bed.

Unfortunately again, the chair has (and always has had) a list to the right; it is VERY easy to overbalance if the sleep is unintentional, causing me to awaken with a jerk when balance is lost. This rarely results in a fall, but it always feels like one.

Distraction

When you are intensely focused on something, and the phone rings, there is a tendency to jump. For most people, this reaction is so small they won’t even notice it – that changes when it brings a wave of knee/hip/back pain. It doesn’t last, it’s little more than an irritant, but it’s a frequent one.

Packing To Move

At least one third of my packing has been accomplished using small steps; every time I have to get up for some reason, I spend 5-10 minutes ‘advancing the project’. Even if I only get up once an hour, that’s still more than an hour’s extra packing each and every day – and that takes just a little of the strain off the main schedule of tasks.

No Speed Limits

Bear in mind that you frequently don’t know you’re crossing a limit until it bites you, and the damage is already done.

It’s a bit like cruising on a winding country road, at night, with a broken speedometer. You’re the only car around so far as the eye can see. Passing objects come and go from view so quickly that they provide only the most basic guide to what speed you’re doing. There are no speed limit signs posted. And you’re in a sports car.

How often are you going to break the speed limits? Most places (Germany’s Autobahns being an exception) have a default speed limit baked into the law – it might be national, it might be state, it might be regional, but it’s there and you have only a vague idea of what it is.

And lurking in wait, at multiple locations along this country road, are public officials with guns, badges, and radar guns.

Sometimes, you won’t know that you’ve gone too far until the next day, when you find yourself in Stage 2, or Stage 3. You will usually only get to Stages 4 or 5 if, in the course of the day, you reached stages 2 or 3 and kept going despite these drastic warning signs.

There will always be occasions when you have no choice. The best thing that you can do is build up resistance and resilience so that you have some protection in your back pocket for when you need it.

In Game Terms

These tasks all have two things in common – they are done more slowly, and they are always planned.

And that’s the foundation for putting them into game terms.

Mechanics

The simplest approach is to count up how many incidents or events there are going to be in the day using the basic tasks list. There might be twenty, there might be 100, depending on how busy a day it is. It’s always the unplanned events that are the most costly. On average, there will be 3-5 an hour (call it four for convenience) and then adjust upward for a busy day or downward for an easy day.

16 hrs x 4/hr = 64.

My, didn’t that get big quickly?

• For each one, roll 1d6 (do them all at once if you can).
• Anything but a 6 is a success – but keep track of any 1’s as well.
• Each 6 exceeds your limits.
• Every 2 1’s lets you get away with one of those excesses. But there’s a rub – whatever your condition of the day is, you have to remove that many 1’s.
• If the number of 6 exceeds the number of 1s, you still aren’t in trouble; half of those events resulted in immediate pain, telling you to back off and calm down.
• After taking away that half, and everything that’s been cleared by 1’s, count up how many sixes you have left.
• 1, 3, 5, 10, 20 – those are thresholds for tomorrow being one stage worse than today. So it’s really hard to go from a good day to Stage 5 in one hit, in fact it’s only possible if you really do do too much. Getting to Stage 3 in one go is comparatively easy.

While you can slip multiple levels on a single day, you can only ever improve by 1. Sometimes, the best you can hope for is that tomorrow is no worse than today.

These represent a specific form of INT check. So if your intelligence is good, a successful save will take away dice equal to the amount you succeeded by – and, if you’re smart, you’ll take away sixes first, then 2-5s.

INT check? Don’t you mean…?

No, I don’t mean a CON check or a FORT check or a STR check or a DEX check. Those may have their place in determining how successfully a task can be completed, or even if a major task can be completed at all, but that’s not what this is about.

This is to determine the effectiveness of your planning for the day, of your planning each individual maneuver – where you are going to put your feet, where is your center of gravity going to be, and so on – and it’s about recognizing when you’re going over a limit and stopping before you go too far, and modifying your planning accordingly.

Other forms of disability

Okay, I’m not an expert in anything but my own condition, but it seems to me that any other form of disability is going to be analogous, though the interpretation might be different.

The similarities between what I have described and what someone who has lost a limb have to go through seem fairly obvious. Once again, they have to plan everything that they do, though time and training can create a threshold high enough that they don’t even notice and do things automatically.

Same story for any unfortunate stuck in a wheelchair. You still want to do all the things you used to do, you still feel capable of them – but you aren’t.

My grandfather was struck blind by an accident. I saw him having to plan everything but doing so. My stepmother is losing her sight (and has been, for years); together, she and my father have found ways around this infirmity, to the point where I don’t see either of them being able to cope very well without the other – not for very long, anyway. What she is able to do despite this infirmity is astonishing. I doubt I could cope as well – too much of what I do is visual in nature. It would be as bad as losing one or both hands, if not worse.

Things are a little trickier when it comes to those with mental disabilities; I have known several people who were as intelligent as you or me, but who were forced to try and communicate their thoughts through brains that had such defects as to make communications difficult. One of them was a fellow computer programmer back in the day. He could barely speak to anyone, but his code was always as good as anyone else’s, and so was his understanding; his tongue simply couldn’t deliver (and he was in a wheelchair, with one arm that wouldn’t do any fine maneuvering).

Another understood everything that you said to him – but couldn’t retain most of that understanding for even a few minutes. You would have to explain things, repeatedly..

Others have problems thinking at speed, or keeping more than one thought in their heads at a time. There are innumerable variations. But one truth is consistent – to get through their days, they have to find ways of working around whatever their problems are, and that means applying whatever intelligence they possess to planning those workarounds, remembering what worked and what didn’t, and so on.

Unusual Challenges

There are 5 situations that pose unusual challenges both for me and for all other disabled, though the extremity of each can vary from case to case. When they occur, they can cause profound emotional and psychological trauma.

Tolerance and Intolerance

The assertion or belief that people with disabilities are less, in some way, than an ordinary person is something that some have to cope with, daily, while others experience it with less frequency but overall, equal regularity.

The belief that we are rorting the system, or gaming the system, to get an advantage. The belief that we contribute less to society than ordinary people and so deserve less support or consideration.

These all attack the sense of self-worth and the motivation that you need to actually do things and contribute, socially or intellectually. Some cases are like a childish bully being cruel to a weaker kid, but the worse ones are when the perpetrator doesn’t even realize what they are doing.

Ableism

Then there is the attitude that it’s all in our heads and we can do whatever we set our minds to, and that therefore no allowances need to be made for incapacity. Many egalitarian people fall into this trap – in trying to treat the handicapped like real people, they can sometimes fall into the trap of expecting them to be able to achieve like ordinary people.

Within our limits, we can – but those limits are not those of ordinary people. It takes an extraordinary effort to even approach being normal. This is especially true of those with mental handicaps.

You do have to make allowances.

Dismissal

Just as bad are those who assume that you’re helpless, or worse, worthless. Especially if you put in that extraordinary effort. People often don’t see how far you’ve come, or what your limitations are – only how far you have to go before you can “measure up equally”. Thankfully, this type seem to be becoming more rare.

Undervalue

This lies an uncomfortable proximity from that problem – some people will unwittingly undervalue your ability or contributions. They don’t mean to, but – often as a consequence of making the allowances – they do.

Failure To Cope

All of this compounds with the stresses of coping with ordinary life to leave some disabled less able to cope, especially when confronting some of these issues. We rub shoulders with our psychological breaking points far more often, and – as with anyone else – when that happens, sometimes we win, and sometimes we lose.

The Disabled As Players

The hardest thing that I’ve ever had to do as a GM was tell a disabled player that the other players did not want him in the game; his handicaps were interfering with their enjoyment of a recreational activity and coping mechanism.

If I had been able to do it, I would have started a game just for him. He understood roleplaying, he understood character situations, he understood mechanics – but could not learn what those mechanics were, at least not quickly enough for the others.

Accordingly, they presented me with an ultimatum – them or him – which left me little choice. I still wish there had been some other solution, but physical, personal and economic circumstances didn’t permit one.

Having a disabled player means making allowances and compromising expectations. It’s like gaming with a small child, though there will be some areas where the disabled player will be just as good at play as you or I.

It’s up to you to find a way to plan around the problems.

Should the same situation recur, I would issue a procedural edict – whenever game mechanics were needed, he told the party what he wanted to do, and someone else at the table would make any necessary rolls and tell him what resulted. This would have obviated the need to explain those mechanics to him every time they occur, which is what the other players found so frustrating. Even if it didn’t work, at least we would have tried.

The Upshot

There are a lot of people out there doing it much harder than I am. Until this move of home was forced upon me, I was settled and stable; handicapped but able to work around the imposed limitations. While the effort of preparing to move has had a debilitating impact, I have every reason to expect things to improve over the six months to a year afterwards, though undoubtedly there will need to be new adjustments to the routine.

I said at the outset that I was not posting this for sympathy. The above explains why – I think others deserve your support and sympathy far more than I do. I’m coping.

And that’s what disabled characters in your games will be doing, too – they are on a personal journey, an arc of learning new limits and learning not to violate them without need, learning how to cope and work around the limitations imposed on them by their conditions, be those physical, emotional, psychological, or social. It’s a process that takes time, and some people are handicapped in their capacity for making such adjustments.

They appreciate any slack they are cut with reference to the standards of performance of an ordinary uninjured person. They know they sometimes need help doing basic things. But they have the full emotional range of everyone else.

It’s an unfortunate truth that the disabled are like any other minority – underrepresented in media and entertainment of all forms. The difference is that when it’s a racial under-representation, you can become aware of it and solve it quickly and easily.

The handicapped deserve to be more than street beggars in your campaigns. Certainly, some of them will be reduced to that, but some will find ways around their problems, and that attitude should earn them a place in the game – not as a prominent or featured character, necessarily, but simply there in the background much of the time.

There are people out there, fighting new battles every day, and often winning them. They have my total respect for what they achieve, and for what they attempt – even if they fail. They should be represented by characters in RPGs doing exactly the same – nothing less, and usually, nothing more.

One final thought to embed: you can think of every character, PC or NPC alike, as disabled to some extent in some way. In the luckier (and more common) cases, those restrictions are so small that people ignore them, or reduce them to a statistic on a page, and never have to learn to plan around them. But everyone has their limits.