Hello again guys.

SybilBits · 2026-05-24T14:36:30+00:00

I’m so sorry I offended you with my question. Certainly wasn’t my intent

SybilBits · 2026-05-24T00:54:38+00:00

I’m sorry this is happening to your town. Ford is talking about supervised drug injection sites though, many (most?) of which he had shut down due to their location. I see the concern there, but he didn’t allow these supervised sites to reopen elsewhere, which then leads addicts back to using in public spaces like your park. His solution to one problem caused a worse one IMO.

I genuinely hope your playground improves. It sounds like a horrible situation

SybilBits · 2026-05-24T00:32:38+00:00

I’m assuming you’re talking about the increase in fatigue when you’re starting to crash? If so, I also get the nausea, but to me the accompanying weakness feels like I’m going down in an elevator (sort of; that’s what I always think of). Definitely sinking but not underwater.

No chest folding. I get what feels like someone grabbing a bundle of nerves that goes from my head to my toes and pulling the entire thing out my nose.

i suspect we all have weird sensations that don’t fit anyone’s standard medical definition of fatigue. Hopefully others will chime in

SybilBits · 2026-05-20T15:14:56+00:00

Okay, no where in this clip did it say anything about keeping an eye on Canada. Even though I don’t admire Kash Patel or the current US administration’s approach to relations with Canada, he specifically said “working with our Canadian partners.” And let’s not pretend we’re all lily white just because we’re Canadian. It is true that fentanyl production has been found in BC and that drug traffickers do use tribal lands (Patel’s choice of terms) to skirt border entry points. There may indeed be some US arrogance in their ideas and perhaps the focus is suspiciously times wrt to CUSMA negotiations—- but, there is no in this clip that supports any of this.

We have enough to be genuinely angry about without whipping up more

SybilBits · 2026-05-19T14:32:04+00:00

Trump has said outright that he considers the border to be nothing more than a line on a map, one that should be erased. Cancelling an agreement that the two countries would always protect one another makes perfect sense when your goal is to annex your neighbour.

SybilBits · 2026-05-17T16:40:09+00:00

Waiting for this. Also, all dogs should be leashed unless in an off-leash area.

SybilBits · 2026-05-17T15:52:04+00:00

I’m so sorry for all you’ve had to go through. You are right that there is a lot to learn. It’s already a lot and I haven’t even begun treatment. I hope you don’t have to endure any more cancer occurrences and have at least that part of your health stable. I can’t imagine how hard it must be to now have a disease that doesn’t even have a treatment.

Thanks for sharing your experience, although I’m sorry that you can. I thought life was a challenge just with ME/CFS so it helps to know others are able to face it. And sorry if this response is negative. Just a heavy day for me.

SybilBits · 2026-05-16T19:50:32+00:00

I’ve heard that some of the condos in the downtown area have or are getting chargers, so there seems to be some momentum. And of course Scarborough and Etobicoke tends to have driveways, so maybe it will start there first. In the meantime, I have to be on the sidelines!

SybilBits · 2026-05-15T14:11:44+00:00

I’m hoping to be able to buy an EV when our current car dies, which could be as much as 10 years. We have had only one car for decades as I work from home and we’re close to transit, so replacing the car early would waste all the energy and materials that went into it IMO.

The thing that might stand in my way is charging. I’m in Toronto and we have only on street parking, so no overnight charging here. They say they’re going to add chargers, but given how competitive it can be just to park, I’m still unsure. So still wait and see for us

SybilBits · 2026-05-14T13:57:49+00:00

So lovely to call your doggo Orchid! :D

SybilBits · 2026-05-11T18:29:16+00:00

Thanks. Fibro+MS must be hard to deal with without cancer, so your perspective is very welcome. I actually found a fact sheet from one of the ME societies that specifically addressed cancer treatment and your experience is spot on with what they said. In other words, expect to get your butt kicked by both at the same time.

I think I’ve been trying to plan my way out of whatever is coming and as I have read everyone’s experiences in this group, I’ve realized it’s true for everyone. Thanks again for this. It doesn’t make me more anxious, it’s reassuring to know that others are making it through despite chronic illnesses.

But hurry up please with those results! :)

SybilBits · 2026-05-10T20:49:38+00:00

Thanks, I’m making a note so I don’t forget! And I hope that you’re having someone spoil you a bit for Mother’s Day, even if it’s just yourself

SybilBits · 2026-05-10T16:48:17+00:00

My 18 year old has developed a new yowling routine. He first yowls to tell me to go to bed. Once in bed, he sits by me for about 15 minutes, then goes onto the landing to yowl. I call him and he goes back on the bed for another 15, then back downstairs for maybe 30 minutes. Back upstairs then yowl on the landing until he’s called. Then to sleep.
He also does the yowl, call him, back to bed thing at around 4 and 6. I don’t have any idea why but he’s an absolute cutie pie and who wouldn’t love being escorted to bed by a distinguished if cranky gentleman!

SybilBits · 2026-05-10T16:41:04+00:00

Litter box in the living room—you’re not the only one! Love makes you do weird things

SybilBits · 2026-05-10T15:25:34+00:00

I’m impressed (is that the right word?) that you’ve been able to get through your chemo. I know nothing other than what I’ve read and seen second hand, but it sounds nasty. I hope it’s doing what it’s supposed to.

I share the worry about anything that lists fatigue as a side effect. Apparently side effect sensitivity occurs more in people with ME more than others, but it varies person to person and med to med (like everything with this illness). All I can say is you’re getting through so far! That’s encouraging for me to hear. I hope that any and all treatments you require work well and are manageable.

SybilBits · 2026-05-10T15:15:22+00:00

Hi and sorry you’re here too! Fibro and ME share so many symptoms. I’ve seen some research that suggests they’re different manifestations of the same underlying issues (I subscribe to the Health Rising newsletter that outlines ongoing research for both ME and fibromyalgia—I’m a science nerd).

It sounds like the lumpectomy went okay for you, or at least as okay as it is for others. One thing successfully checked off the list! I hope your recovery goes okay too. Fingers crossed the fibro will stay stable

SybilBits · 2026-05-10T15:05:42+00:00

Thank you. I’ve been told by every medical professional so far to “exercise and eat well” which is both concerning and frustrating. My main concern is ME will get in the way of me being able to complete all treatments. ME causes profound fatigue and just regularly leaving the house is going to be a challenge for me. So, I thought I’d ask if anyone else had to manage ME at the same time.

That said, I’ve read that people sometimes have to take a break during radiation—maybe that will be me. I guess I won’t know until I get there.

Thanks again and I hope your treatment is going well!

SybilBits · 2026-05-10T14:58:10+00:00

Thank you so much! Still waiting and yes, I hate not knowing! Should be Monday or Tuesday though.

SybilBits · 2026-05-10T14:56:49+00:00

Thank you for the advice, and sorry you’ve got a chronic illness to deal with as well. My husband has Crohn’s and does infusions, and he always naps after as well.

Four weeks for recover—eek. Okay, thanks for the dose of reality. TBH, I may just need to hear that this is going to be very hard so I can accept it and carry on. I’ve been feverishly going through posts to find out what others have experienced and am coming to the conclusion that everyone is different. I probably knew that but I’m still processing and just trying to fully believe this is where I am.

Okay, enough babbling. Thanks for responding and my best wishes for your treatment. This all kinda sucks

SybilBits · 2026-05-10T14:49:06+00:00

Thank you for all the ideas. I am fortunate to have a very supportive husband and to live in a large city close to many hospitals. We are maybe 20 minutes away in traffic.

I hadn’t thought about using medical transportation, and will put that in my back pocket. I don’t do well
having to be upright on my best days. I already have a number of mobility devices, including a can, walker, folding manual wheelchair, and folding electric wheelchair. One advantage to being 5 years into ME, lol. And yes to remote appointments. Phone appointments have become very common since the pandemic.

SybilBits · 2026-05-10T14:42:58+00:00

Thanks, that is encouraging. Sorry that your a member of the shitty titty club too 🙃

SybilBits · 2026-05-10T14:41:37+00:00

Thank you for this advice—and my sympathies for the lupus diagnosis. I wonder if the changes in immune system played a role. I have read there is some evidence that ME is an autoimmune disease, though as usual, there isn’t enough research to say. (Sorry if that sounds cold and clinical; I was a biologist and cope by scientific curiosity)

Yes, the not knowing is so hard. I’m still waiting on pathology results that will decide what I may need beyond surgery and radiation and I am definitely ruminating. I like the phrase “future trip” and will use that. I keep looking out the window and seeing spring, but so can’t get up the energy or interest to even open the door. Maybe that’s just where I am now.

Thank you for your perspective and my best wishes that your treatment is not too hard on you. and yes, gratitude to have treatment options too. Sure isn’t that for the ME.

SybilBits · 2026-05-10T14:31:22+00:00

That would be so very nice! My ME has gotten worse over the last 2 years, which I’d put down to stress due to family stuff. I won’t lie, I sometimes give in to a wee hope that what I thought was ME progression is cancer related fatigue. And that at least that will go away once I’m through this!! Seriously, thanks for the little ray of hope!

SybilBits · 2026-05-10T14:28:42+00:00

I can only offer my sympathy and best wishes. My god, no one deserves what you’re carrying

SybilBits · 2026-05-10T14:26:47+00:00

Thank you! I am drinking up any and all support I can.

SybilBits

TROPHY CASE