What Happened …

“Been home since yesterday” I wrote in a recent post. Today I’ve been home for five days. Sunday 22nd March my cat attacked me, in the early morning, on my way back from the bathroom when I was barely awake. Out of the blue, but something she had done four or five times before.

I blame myself. After caring for six successive cats previously in my life, as well as a dog, various poultry and a lamb, I believed a rescue cat would present no problems.

The fact that Moggy had been picked up of the streets and had spent 100 days in the shelter should’ve been a warning. I read that history on her hutch at the shelter and didn’t take in what that might mean. The fact that after all the paperwork was done and we said our goodbyes, the shelter’s staff said don’t bring her back … that should’ve been my second warning.

But what should I have done then, leave her sitting on the counter and demand my money back? I didn’t.

The first time she clawed and bit me was a few days in, when I picked her up to give her a cuddle. My whole left hand swelled up and that morning I was at the GP getting antibiotics and my hand dressed. Cured me of ever again trying to pick her up.

She did not allow me to pat or brush her. She scratched the furniture. She ripped up carpet. I trained her out of all those although patting and stroking her was always a dangerous move on my part. Having her sleep beside me sitting on the couch, laying so near she touched me with her back-end was as close as we got. Sometimes lately she allowed me to lay my arm over her back and just recently she allowed me to then scratch her under an ear.

In the day-times it seemed to me we were getting somewhere, me taming her, she training me.

Night times, she ruled the apartment except for my bedroom and the bathroom, both of which I shut her out of at night. I had to be so watchful all day I just wanted to relax at night. I wrote in my journal, then slept two or three times.

The short distance between the bedroom and bathroom was when she’d sometimes claw me, always at night or early in the morning, probably when she thought she should have food and I wanted to go back to bed. When she drew blood, I washed my wounds under running water, dressed them, and called them an unfortunate mistake on her part.

Some nights on my bathroom dash, I was aware and awake enough that I waved a towel at her or a shirt on a coathanger, both of which she respected as too weird for her to deal with. She would run off down the corridor.

Weeks would go by and I would forget to be watchful on those little trips. Lately I thought she had grown out of those measures. That she trusted me enough to know that she’d never go hungry. She’d become quite the heavy weight after all, and got plenty of food, was what I thought.

So Sunday 22nd March early a/m, she jumped me when I turned to go back into my bedroom, clawed me above my ankle and hissed! The hissing part was new and I was terrified! I nipped back into the bedroom, with information flashing through my mind, I’d be alright … I had antiseptic cream in the bedside drawer, cotton wool and sticky tape. The wound looked torn, a flap of skin—awful—I covered with everything I had at hand.

Wrong.

Should’ve called somebody for help then. An ambulance, maybe.

But. It was Sunday a/m and I was in the bedroom, would ambos even come into the flat knowing there was a feral animal in there? The whole thing would’ve escalated beyond what it was worth, in my opinion.

Naturally I did not sleep, feeling baled up, knew I was doing something wrong. Knew something had to change. I’d had Moggy for 20 months by then. I was getting older, more fragile and my skin was already thin. How many more times could I allow her to attack me like that?

I got up at 6.30 a/m, and after I fed the animal with her usual 20 kibbles in the usual way, washed my leg with a Wet One because the skin was torn and I didn’t dare to put it under running water, the pain alone would’ve caused me to pass out. At that time of morning I have very low blood sugar.

Anyway, didn’t hurt once I’d covered it with a large band-aid. Once again hoped for the best. Set to thinking how to manage the situation better.

Wrong.

Didn’t ask anybody for help. Could’ve called K, who would’ve taken me to ED. Thought I could last till Monday and see the GP. Which I did.

GP very unhappy with me. They cleaned wound and dressed it. Drew a circle around the infection, told me to go to ED if the infection went over the line. Put me on antibiotics. Then they put two elastic bandages over the whole lot, these were so tight that I knew if I took them off to see whether the infection expanded, I’d never be able to get them back on.

Monday night, W came to solve the problem of a feral animal which could not be taken back to the shelter. He took her away and I haven’t asked. Mea culpa.

The GP told me to come back on Friday but probably hoped I’d come to my senses and go to ED on Wednesday. I didn’t. I’d had to wait for an eye specialist appointment for four weeks already, I had a very sore right eye, I went to the appointment on Thursday. Went back to the GP on Friday.

The antibiotics hadn’t touched the infection. The whole thing was a pus-filled crater surrounded by a large angry tight red swelling. The GP angry though he did some digging in there and mopping up. With no local anesthetic so of course I flinched. He told me to go home, pack a bag, go to ED. I was by then angry with him because why no local? And why was he so squeamish? How did he even get through medical training?

I went to ED finally. They had a look, didn’t do any digging, put me on intravenous penicillin. Four nights. And sent me home with more antibiotics to take by mouth.

At this moment in time, Monday 6th of April, the wound has partially closed over, still a large band-aid. The antibiotics are now finished and here’s hoping the infection is gone. It’s been fourteen days.

ME/CFS

Paragraphs by Chronically Rising on Facebook are in Blue. My comments and notes in black. I’ve posted up Chronically Rising’s whole article and commented on just the areas that affect me. All of this is bad enough, but note that quite a few maladies shelter under the ME/CFS umbrella.

POTS, OI, Fibromyalgia and PD are the four co-morbidities I believe the term is, that are part of my ME/CFS experience. And finally–I discovered the other day–Lymphoma (DLBCL in my case) is a known possible cancer that can result from ME/CFS.

Why People with Myalgic Encephalomyelitis (ME) Can’t or Struggle to Work

Describing the impossibility of employment while living with Myalgic Encephalomyelitis (ME) is like trying to explain the weight of gravity to someone floating in space. ME is a complex neurological, fluctuating and disabling disease that strips patients of the basic building blocks of daily function—let alone the capacity for work.

We are not lazy. We are not unmotivated. We are not “wasting potential.” Most of us were hardworking, driven and passionate about our careers—until ME took our ability to participate in life as we knew it.

I’m lucky now that I’m of an age where it’s fine not to be working for a living. When I first became ill in 1997, and could no longer work, I had those words thrown at me. People told me I seemed unmotivated (a careers counselor), bone-lazy (a relative), and wasting my potential (a person at one of the schools where I had worked). A heart specialist told me I was the worst hypochondriac he’d met before he physically, hand gripping my arm, walked me out the door.

Centrelink aka the dole office at the time, was the worst place where we all would’ve had to spend useless hours trying to get an allowance just to be able to continue to lay on the couch eking out our days till we became well enough to work.

Getting back to work never happened, though I did become well enough to study part time and when that ran out, to start volunteering. While I was studying, my son was getting through his high schooling. We lived on his Family Allowance and my Austudy. We had a vegetable garden and poultry for eggs, and a lot of help from my parents who were farming nearby.

The Disability Reality

Only about 25% of ME patients are able to work—and many of those can only manage limited, flexible work. At the other end, 25% of people with ME are housebound or completely bedridden. Even those with “mild” ME—often invisible to others—have lost at least 50% of their pre-illness functionality.

These numbers don’t represent a lack of trying. They reflect the physical, neurological and immunological collapse that defines ME.

My level of illness can best be described as mild to medium. Even in the days when I was at my sickest, I managed get up from the couch a couple of times a day to hang up a bit of washing, cook a meal or fetched a loaf of bread. My son was twelve the year I became ill, and as a result learnt a lot of life skills.

The year that followed my son finishing High School and leaving home, and my Austudy Grant running out, was one of my worst years. I had no income for months at the time and Centrelink kept harping about me starting work. For I don’t remember how many months I was forced to attend 10 useless job interviews a fortnight.

The stress built until I was forced back onto the couch, sicker than before. You might think I got an allowance then, but I don’t recall that I could even drag myself to the office. I don’t remember what I lived on that year.

Finally back on my feet in 2004, I was able to go volunteering. Ten hours a fortnight in a volunteer-job were enough to get me an allowance. It got me outside where I could get away from all the bad smells that plagued me, working Landcare sites, learning the difference between weeds and plants–I bet I pulled a few thousand camphor laurel seedlings in my time–meeting people, learning all about catching cane toads and a host of other things, with plenty of rest between sessions. A second job had me making up the remaining needed hours at home, setting up a database for the local museum.

Post-Exertional Malaise (PEM): The Wall We Can’t Push Through

PEM is the hallmark symptom of ME. It’s a delayed and disproportionate worsening of symptoms following even minimal physical, mental or emotional exertion. The crash usually comes 12 to 72 hours later and can last for days, weeks, months or longer. For many, the decline can be permanent.

A 2019 international survey by Holtzman et al. (n=1,534) found that 67% of people with ME reported never recovering from a crash caused by PEM.

This is not just tiredness. It’s post-exertional physiological injury. In ME, pushing through doesn’t make you stronger—it risks permanent harm. Even minimal overexertion can trigger a level of collapse some never recover from. It’s why exercise is not just unhelpful but dangerous for us.

PEM … I get mine 48 hours after the event, usually in the early morning. If I overdid it badly, I’ll get heart arrhythmia (a scary thing in itself) and I’ll be too tired to get out of bed. In the days that I had or have a cat, I will eventually get out of bed. Have breakfast, feed the animal and sink down on the couch. Or I’ll have a nap sitting up after breakfast.

Having a shower, washing my hair, and an all-over moisturizing cannot all be done on the same day. If I’m washing my hair, I’ll just moisturize my face and chest. The moisturizing is needed to prevent the skin allergies that lead to discoid eczema, the second itchiest skin condition I have yet experienced, that is kept at bay with diligent moisturizing.

Preventing PEM, I need to pace. I check my health app on my mobile. If I walked a lot the previous two days, I will stay at home. Like today when I’m typing this instead of going for a walk. Yesterday and the day before, I walked 2970 and 3477 steps, so today I must limit myself to 2000 steps or thereabouts or regret it tomorrow.

Fluctuating Illness

ME is a disease of instability. You might see us online one day or hear our voice in a short conversation—but not see the collapse that follows. ME doesn’t run on a schedule. Our capacity to function can change dramatically from hour to hour and day to day.

This fluctuation makes it impossible to meet deadlines, maintain fixed schedules or commit to the consistency required for employment.

The events I’ve planned to go to, that I haven’t been able to make it to, are a list as long as my arm or longer. I used to believe in miracles, but no more. I’ll never be able to make it to a LEGO exhibition, or LEGO shop. Music festivals. GOMA. Art exhibitions. Painting au plein air. Plays and dramatic productions. Films.

All gone. All too hard. Too much energy needed. Too much stress.

Cognitive Dysfunction

“Brain fog” sounds gentle—ME cognitive dysfunction is not. It’s memory failure, language loss, confusion, sensory overload and an inability to process basic information. Reading, speaking, typing and even thinking become physically exhausting. This is not surprising, as your brain uses 20% of your body’s energy.

Workplaces depend on sustained attention, memory and executive function. These are precisely the areas ME can impair most.

Very fortunately for me, I don’t believe I’ve suffered much of this element. I can still work on this blog, I can still write my fictions, work out an intricate knitting pattern, and read … both fiction and nonfiction. This year I’m studying Depth Psychology. Last year I studied Dream Interpretation.

Energy Production Failure

ME is not a condition of low motivation or simple fatigue—it’s a dysfunction in cellular energy metabolism. Our bodies cannot produce or sustain energy normally, and rest doesn’t replenish it. No sleep, vacation or energy drink will undo what this illness does at the cellular level.

Days when I don’t have energy seem to pass without my input. I don’t understand where they go sometimes. Afterward I have no idea what I did. And I don’t any longer drink alcohol, coffee or chocolate. I don’t smoke anything. And never now eat sugar, chocolate or any other consciousness-altering substances.

My diet is plain. I eat GF DF LowFODMAP and no sugar other than three small serves of fruit per day. What’s left you say? 37 vegetables, 7 fruits, chicken, fish, eggs, and tofu, nuts and seeds, corn chips. Water to drink.

Physical Limits

Even basic physical tasks like sitting upright, getting dressed or speaking can exceed our energy envelope. Some of us need to lie down most of the day. Others collapse after simple movements. The physical exertion of daily life alone is already overwhelming—working on top of that is physiologically impossible for many.

I haven’t sat upright for more then ten minutes at the time for years. I’m working right now at this post with a board across my knees, my laptop on that and typing from a forty-five degree angle sitting back against my couch cushions. I paint, read, eat, knit at this angle. I’ll sit up for brief periods to build with my LEGO and have my breakfast, and entertain the odd visitor.

Light Sensitivity

Many of us can’t tolerate typical workplace lighting. Fluorescent bulbs, sunlight and screen glare can cause migraines, vertigo, visual disturbance or neurological crashes. Some live in darkened rooms permanently.

I have been worse in this department. But I have been able to fine tune my apartment, and I’m not dependent on others. Same as with noise sensitivities. The unit I live in is so well insulated there’s hardly any noise.

Noise Sensitivity

Normal sound levels can be unbearable. Our nervous systems can’t filter noise like healthy ones can. A ringing phone, conversation or keyboard clatter can feel like an assault—leading to overstimulation, pain, confusion or even seizures.

Chemical Sensitivities

Many ME patients have Multiple Chemical Sensitivities (MCS) or Mast Cell Activation Syndrome (MCAS). Scents, cleaning chemicals, laundry products and colognes—everyday in most workspaces—can cause immune reactions, neurological symptoms or even anaphylaxis.

I have a LOT! off chemical sensitivities, intolerances and allergies. There are foods I can’t eat, stuff I can’t to breathe, stuff I can’t wear. Sometimes the sensitivities are affected by all aspects of an entity. For example, I can’t wear wool next to my skin, can’t knit with woollen yarn, can’t eat mutton or any part of sheep, and can’t use lanolin cream. What happens is I get a rash. Inside your mouth a rash is no fun at all.

Other times it’s just one aspect that is a bother. I can’t eat the brown skin on almonds, walnuts and brazil nuts, cinnamon bark, or similar substance. I get a sore throat. I usually don’t bother to reel off the whole lot when people in, for example, the medical profession, ask me for my allergies, or ask me to fill in a form with a tiny box for allergies.

I tell them only the half dozen or so that will impact them. These days, living where I now do–in a retirement village–my biggest regret is that I can’t attend most of the functions due to an overload of perfume and fragrances. It seems to me that as people get older they wear more and more, possibly because they’re losing the fine-tuning of their sense of smell, or they’re so over-dosed on scents that they need to wear more and more just to be able to smell them.

Sometimes, just getting into the elevator means getting into a cloud of scent left there by a previous rider. Usually I hold my breath, easy to do because I live on Level 2.

Since my last crash, I’ve become even more sensitive to chlorine. Bleach and swimming pools have been a bane for years, but now also I have to brush my teeth with water (most tooth pastes contain chlorine.) The list goes on.

Immunocompromised Status

A mild virus for a coworker can be a months-long crash or permanent relapse for some of us. Many people with ME do not have robust immune systems. Shared office spaces, public transport and even remote jobs that require appointments or outings pose a major health risk for some of us.

I still wear a mask in public places like shopping centres, public transport and busy streets. Or if there’s a lot of coughing nearby. Or if I need to squeeze into an elevator with fourteen others after a fire evacuation practice. Or. Or. Or.

Accessibility

Even without wheelchairs, ME patients may need full recline, silence, minimal light, temperature control and no chemical exposure to function. These aren’t preferences—they’re survival requirements. Most workplaces aren’t designed to meet these needs.

The Emotional and Social Weight

We live with an invisible illness in a world that demands visible proof. If we appear “well” for a moment, it’s assumed we’re fine. If we look ill, it’s assumed we’re not trying hard enough.

We’re judged for not working and also judged for trying to do anything at all. The emotional toll of constantly justifying your illness to society, friends and the system is devastating.

We Are Not “Just Tired”

ME is not burnout. It is not depression. It is not laziness. It is a multi-system neurological disease that profoundly disables us.

Some of us write, create or advocate when able—not because we’re well enough to work, but because these brief, careful expressions are a lifeline. They do not reflect our baseline or our capacity to sustain employment.

Sometimes, survival means stepping away from everything you love just to make it to the next day.

To Employers, Friends and Society

If someone with ME says they can’t work, believe them. We are not giving up. We are protecting what little function we have left. Even when we look okay, what you don’t see is the days or weeks of suffering that follow minimal exertion.

We’re not lazy

We’re not “burned out”

We’re physiologically ill

We’re doing our best to survive

That’s all. I’m trying to live the best life I can.

Browser Shenanigans …

My online world broke this morning, like this tile broke … and was rethought in the way that I’m having to rethink my desktop …

I was glad to hit on a familiar page at last with this one … my WordPress dashboard. Thankfully, it was the same as it’s always been. I heaved a sigh of relief when I arrived.

It was then 2.30 PM and I’d struggled since I sat down after breakfast and chores to get back to my familiar scenario. My troubles began when suddenly my online bank was unavailable and the helpline operator and I thought at first that I’d been hacked.

But no, my then-browser updated overnight and apparently threw up a firewall that kept me out of my bank as well as several other places. Well I thought, away with that browser. I de-defaulted it and all my problems began.

Who knew there’d be 500+/- settings, and that there’d be a whole different architecture to accustom myself to, and that there’d be a bunch of new rules? One good thing about the new old browser is that everything is easy to find. I learned more about browsers in a couple of hours than I’d learned the whole year with the de-defaulted one.

I hope all the new stuff sticks in my head, as do I hope that all the stuff I have open on the desktop stays on there when I close the laptop. That I don’t have to find it all from scratch again next time I open the lid.

And although I enthusiastically welcome the password app, I also wrote down a bunch of them. You never know when you might be shut out, and at what level.

I managed to retrieve the situation without the help of an AI assistants, I’m glad to say. What FB AI assistants are doing beggars belief.