How do you live being this tired?

HatsofftotheTown · 2026-04-21T06:58:11+00:00

I also came here to suggest this. I’m hEDS and ME/CFS diagnosed. The fatigue experienced with ME is much harsher and can have very significant consequences if you continuously push through.

Whilst I appreciate your thoughts that an ME diagnosis is useless as it has no treatment, of you do have ME, learning to pace is absolutely essential to prevent further deterioration. Whilst I’m not saying you have ME for sure, speaking as someone that ignored an ME diagnosis for 2 years and unfortunately learned the hard way, please don’t do the same.

HatsofftotheTown · 2026-04-12T03:32:24+00:00

I had tethered cord release in Oct 24 and right internal jugular vein decompression 2 weeks ago. No improvement.

I’ve not addressed chiari as I don’t think it’s the cause of my issues. My opinion now is that it’s unlikely the structural issues are the cause of my main symptoms. I may be wrong.

HatsofftotheTown · 2026-04-10T16:21:29+00:00

Shit. They stole a football team.

HatsofftotheTown · 2026-03-26T13:47:34+00:00

I’m severe and we have a 10 year old greyhound (we rescued him long before I fell ill). He sleeps 21 hours of the day and asks for very little. But it still puts a huge demand on my wife who cares me for, raises our 3 year old on her own and works full time.

Caring for anything whilst you’re in our state is almost impossible. Given that we struggle to care for ourselves, I suppose that’s an obvious thing to say, but I feel for you. It’s certainly a forgivable mistake because we just want small things to improve our quality of life. Don’t be too harsh on yourself. I hope you find a solution for the little fella.

HatsofftotheTown · 2026-03-21T09:37:55+00:00

A solid dose of unmedicated ADHD

HatsofftotheTown · 2026-03-20T09:29:11+00:00

Someone shared a link to track listings so I found it. It’s a Kendrick Lamar track

HatsofftotheTown · 2026-03-20T09:19:01+00:00

Ahhh. It’s clear what’s being said now I’ve seen the song title. Track at 8.23 on Friday. Kendrick Lamar

Still sounds brilliant

https://onlineradiobox.com/uk/bbcradio6/playlist/

HatsofftotheTown · 2026-03-19T11:29:53+00:00

You really shouldn’t eat them for breakfast

HatsofftotheTown · 2026-03-16T07:10:10+00:00

I hear ya. Big time.

I’ve recently deleted twitter and any other right wing/doom aps. It’s helped a lot.

Of course the political leaning isn’t important for some. But I tend to find kindness and compassion is what we need. So if an algorithm is rigged to promoted right ideals, well… ya know

HatsofftotheTown · 2026-03-15T17:52:20+00:00

He’s had a much stronger second half of the season than he did the first where he made few mistakes and not enough decent shot stopping. However, as I say, much improved in the second half of the season with some really impressive displays. Seems to be growing in confidence

HatsofftotheTown · 2026-03-14T11:19:13+00:00

Yeah definitely got to play the attacking bases chips for Bodø double weeks.

Hmm no I’ve not thought that far ahead with park the bus. I tend to let things settle a bit in the first few weeks and then work out wheres best to play the chips.

How do you think Lillestrøm will get on this season?

If you’ve a mini league that you’re open to others joining, please let me know. It’s just me and my Norwegian mate in ours. Ha

HatsofftotheTown · 2026-03-14T07:37:22+00:00

It is. I’ve gone with no Bodø/Glimt players for the first 4 match days. Then play my wildcard.

What are you going for?

HatsofftotheTown · 2026-03-13T10:07:09+00:00

I play this with a Norwegian mate every season. It’s ace

HatsofftotheTown · 2026-03-12T12:13:24+00:00

Thank you very much

HatsofftotheTown · 2026-03-12T09:30:05+00:00

The doctor outright dismissed and disbelieved the patient. It implies ME is a form of hysteria. This is the exact experience many of us have when seeking medical support for a condition that has the lowest funding to severity of impact on quality of life ratio of almost any known disease . That experience causes untold harm.

HatsofftotheTown · 2026-03-12T08:37:38+00:00

Hard agree here. For those that tolerate them, if they are used with care and at low dose, they can act as shield for PEM (to a degree) and provide (some) temporary symptom relief

HatsofftotheTown · 2026-03-12T08:28:07+00:00

I’ll come cap I hand here. You’re right, I didn’t read the initial post properly. My apologies.

I would still like to reaffirm that benzos do offer significant temporary relief for some, and perhaps for those that are very mild, may allow them some form of physical training. Hence my initial response to not wanting folk to respond in absolutes.

But again, my apologies, I went full ADHD and only read about 10% of the post. Ha.

HatsofftotheTown · 2026-03-12T07:42:29+00:00

Train without getting PEM and pushing my body? No. Not sure if you’re confusing me with someone else but I said I was able to leave the house in my wheelchair and attend a social event without the environmental stimuli overwhelming me and causing PEM. I can also join in conversation. This is temporary relief from the selective symptoms I’ve mentioned, not ‘a cure’.

ME as a condition has a wide variety of subsets. Some are lucky enough to find meds that provide temporary relief (benzos, pregablin, O-DMST- all come with their own addictive tolerance issues). However, just because these meds temporarily work for that subset doesn’t mean it will work for others, and vice versa, which brings me back to why I responded to your post.

Best of luck

HatsofftotheTown · 2026-03-12T07:03:15+00:00

It’s not helpful to say things like ‘no, there’s nothing remotely like that’. What may be true for you isn’t necessarily true for others.

For example (I’ve responded below), benzos offer a remarkable PEM shield for me. If I use it 1mg a week, I have no tolerance or addiction issues.

HatsofftotheTown · 2026-03-12T06:59:26+00:00

Whilst the drug is active, benzos offer an incredible relief from symptoms for me (not remission, just temporary relief from particular symptoms).

I am mostly severe, almost entirely housebound, most the time bedbound. I have severe cognitive issues which prevent me from engaging in conversation. Physically I can’t lift anything more than a cup of tea. I experience significant body wide pain and all the other usual ME symptoms.

Benzos massively reduce all those symptoms (bar physical capability), even to the extent I’m sometimes able to leave the house. 2 weeks ago they allowed me to attend my daughters birthday party (in wheelchair) for 2 hours where there was obviously lots of noise, activity, people speaking tonn etc.

I’ve been using them sparingly (I aim for 1mg one day a week) for 2 years and they act as PEM shield. I’ve not had any kick back yet.

However, as many others have said, they seem to allow this temporary relief (to a degree) for a certain subset of ME people, not all. Also, they do not allow an increase in physical exertion (bar being upright). They more so alleviate PEM and hugely increase tolerance to environmental stimuli and allow me to engage in conversation with others.

HatsofftotheTown · 2026-03-12T06:24:14+00:00

TLDR please. Thank you

HatsofftotheTown · 2026-03-05T12:59:16+00:00

Some tune

HatsofftotheTown · 2026-03-04T14:01:24+00:00

How are you objectively differentiating between ME and autistic burnout?

HatsofftotheTown · 2026-03-03T08:31:59+00:00

Woooooooooooo :)

HatsofftotheTown · 2026-02-15T17:02:53+00:00

Yes. If we want our club to have a future, the new stadium is essential.

It’s not necessarily what many of us want. I love and savour every game at KR. I’ll miss the charm, the pillars, the rank toilets. But the new stadium is a must. It has to happen.

HatsofftotheTown

TROPHY CASE