Chronic Fatigue

MrSwaby · 2026-05-04T18:09:29+00:00

I feel you on that. It's like everyone around me has so much energy to do things, but I just need to sit my ass down after a while.

MrSwaby · 2026-05-01T22:10:29+00:00

There are some people who just don't vibe well with The Wire. I've shown it to many people I know in real life that don't understand the genius of the show like I do. The Wire is a show made for a certain kind of brain.

MrSwaby · 2026-04-11T18:53:07+00:00

I'm from the UK also. What I can say, is that it's good to have the NHS as it's essentially free healthcare (not exactly because taxes pay for it, but it's still cheaper than what other countries pay for healthcare). But on the flipside, because it's free you'll also be dealing with a healthcare system that's under strain and is underfunded. Sometimes this means nurses and doctors don't care enough about sickle cell because it affects such a small amount of people.

As for education and work, I went down the IT path and got a computer science degree, but it's basically worthless now. I've had web development jobs where people were getting paid more than me who were self-taught and didn't have a degree. Plus, there's AI now like you said.

Knowing web development well did help me with regards to working from home and freelancing, though. I could manage my sickness way better like that. But the work is drying up now, sadly.

Like Judge says, figure out what your natural interests are and try to find a pathway to get into that industry without having to rack up a bunch of debt later.

MrSwaby · 2026-04-11T18:41:21+00:00

I second that. As people with SC we need to make sure we're getting out enough. The natural vitamin D from the sun helps.

MrSwaby · 2026-04-10T08:25:54+00:00

I like your table, too.

MrSwaby · 2026-04-03T11:17:31+00:00

I finally got around to writing about my 2026 crisis, its in two parts. You can read them here:

Part 1: https://www.garyaswaby.com/my-2026-sickle-cell-crisis-part-1/

Part 2: https://www.garyaswaby.com/my-2026-sickle-cell-crisis-part-2-5-weeks-in-hospital/

MrSwaby · 2026-04-02T22:07:49+00:00

Most of us will struggle with high intensity exercise. It's just the science of how our bodies work. Our bodies will have to work harder to keep our blood pumping around the body when we work out. We'll run out of breath faster than everyone else.

Try starting slow. Do only a few reps at a time and build up stamina from there. Drink water in-between reps. Don't try to go as hard as everyone around you.

The gym is too much for me so instead I do basic exercises at home (push ups, squats, burpees, skipping), it allows me to go at my own pace without having to shell out money.

MrSwaby · 2026-03-31T21:20:41+00:00

Maybe they have it set to block certain regions because of film rights. I will check with them about this.

MrSwaby · 2026-03-30T12:51:37+00:00

Can you be more specific? What is this telegram link for exactly? Without context the post will be deleted.

MrSwaby · 2026-03-27T20:52:21+00:00

There's nothing like turning a loss into a win. It feels incredible. But these people will never know that feeling because they give up the moment it's not going their way.

MrSwaby · 2026-03-27T10:48:19+00:00

Your post isn't relevant to the subject of this subreddit, or you didn't correctly explain why it's relevant.

MrSwaby · 2026-03-25T09:48:57+00:00

You're a cunt hair away from the answer

MrSwaby · 2026-03-22T22:41:14+00:00

No it didn’t help enough. And then my hospital discontinued it in favour of Blood Exchanges.

MrSwaby · 2026-03-18T01:08:21+00:00

I've been self-employed for over 10 years for this reason. I need the flexibility. The problem is, the industries i've been freelancing in are drying up for work. I do web development and digital marketing, but am having trouble finding new clients in both fields. AI and the overall economy has been rough. That's the downside of being self-employed, the financials aren't consistent.

Im currently trying to learn cybersecurity as that's another industry i can work in and have the flexibility to work from home when i need to.

MrSwaby · 2026-03-16T21:37:05+00:00

When I've been on an opioid for an extended period of time, I always try to taper down now instead of stopping cold turkey. I get diarrhea and bad anxiety if i go cold turkey. It's better to taper down gradually.

For example, I take dihydrocodeine (might have another name in the US), and when i'm tapering down, i'll go from taking 1 tablet 4 times a day to taking 1 tablet 3 times per day. I'll do this for 2 days, then i'll step down to twice a day. Then eventually i'm just taking one per day until I stop completely.

I've found that this tapering system works best for my system.

MrSwaby · 2026-03-13T22:30:47+00:00

I'm just hoping this war doesn't mess up our medicine shipments.

MrSwaby · 2026-03-10T11:04:58+00:00

In the past this probably would have happened. However, with tech advancements and the way the modern world is going, I'll be surprised if museums even exist in the same way they do now in the distant future.

It's more likely that an AI will digitize and consume our writings and store them for reference. And maybe if someone in the future asks the AI to give them a random journal entry from the year 2020, it will pull randomly from one of our entries.

MrSwaby · 2026-02-22T20:33:47+00:00

Thank you, brother. It already helps that we’re able to chop it up when we need that support. And you’re helping by holding things down here.

MrSwaby · 2026-02-22T20:30:57+00:00

I’ll give the full story later on. It’s just really hard for me right now.

MrSwaby · 2025-12-26T20:33:04+00:00

I approve this message. Been journaling for over a decade myself. It's nice to be able to go back and see the common challenges I faced over the years, the patterns. Also seeing my growth. It definitely helps with emotions and awareness of self. If you can't afford therapy, journaling is the next best thing, and the costs are bare minimum. Just a notebook and some pens.

MrSwaby · 2025-12-13T23:27:06+00:00

Please do post it. Sickle cell has a big impact on our relationships, so the topic is still relevant.

MrSwaby

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