Exhausted (and really frustrated about it)

[Glenquoich]

Today, I'm absolutely exhausted. It feels as if someone has removed all my bones and replaced them with lead weights. Even as I type this my fingers are dragging across the keyboard.

It's been a bed bound week, with the exception of a couple of hours last night when I was giving a talk to patients via Zoom in the rehab I was in. On account of me being 8 years clean and sober.

Other than that, my week has consisted of phone calls with my OT and counsellor and some emails. That said, the emails have been unpleasant affairs, I'm still trying to access relevant NHS treatment and it's been a 3 years long saga. My emails have been between myself and MSP who's fighting my case and myself and the public services ombudsman, so I'm having to talk about some really unhappy times.

I feel like I could sleep for days but I'm too tired to sleep and have felt like this for a few weeks.

The problem with this is my daughter was in an accident at home yesterday and required surgery today (serious but not life threatening) and my wife has gone down to her house to watch our 4 grandchildren. I really want to help. I was supposed to take my 2 grand daughters (7 and 5) for the weekend and was looking forward to some "Big Grampa Time" with them but I'm too fatigued.

This 'fatigue lottery' has been decades long and these prolonged bouts of fatigue feature in my life every bit as much as they did in the early years post TBI.

It's a horrible day today, I'm too tired to even sleep it off.

[Hidden]

Unfortunately i understand this all to well.Sending a hug ur way🤗

As for the grandkids can u still do stuff with them while u r idle?? Watch tv together,games,coloring or etc? ,this way ur still engaged with them n have the time with them.!?

[Glenquoich in reply to Hidden]

Thanks for the reply, I can't get out of bed without a struggle and I've promised myself never to let the grandkids see me this way, at least until they're much older. It would feel irresponsible of me to be looking after them in this current state and we live in a remote place.

I've probably set myself up for a fall like this over the past few years, my default setting with them is full-on active clownery. It's what they've come to expect and still a bit too young to have that change all of a sudden.

[Hidden in reply to Glenquoich]

Understandable...

Just know we r all here if ya need us.

[bexx87 in reply to Glenquoich]

No you havent set your self up to fail, i dont have kids or even grand kids but you know where your threash hold is

[bexx87]

Dont be scared to listen to your body, it knows what its asking for (its hard for me to trust my body so I get it, I do wonder sometimes if I drift off to sleep will my brain will let me wake back up or does it want to put its self in a induced coma naturally and i wont be able to intervene due to the state of not being able to deal with real live)

I had to take half a day off work yesterday as i had to attend 3 virtual meetings on wednesday and then my ovlaries decided to intervene and i was shattered so in my half a day off yesterday (that i sprung on my manager without warning over instant messenger which he approved off me taking sime self care time out of) i spend 3 hours sleeping and 3 hours pampering myself in various ways and i woke up this morning in a much more happier and productive mood to deal with work and im hoping to stretch out the good mood through out the weekend

[Glenquoich in reply to bexx87]

Thanks,.

About 3 years ago I spent nearly 5 months working 16 hour days renovating a house to sell in order to buy the place I'm in now. Ever since then my fatigue bouts have been longer and more severe, I think I overstretched myself then by thinking I was 25 instead of 50.

I've never been able to pace myself to accommodate my Brain injury.

[bexx87 in reply to Glenquoich]

I am completely the same i seem to think im super women then my body goes time to ache women

And you could always give the headway line a call to vent your frustrations

[Painting-girl]

So sorry you are having a tough time I hate having to limit my time with ny granddaughter (two and a half) since the brain injury, and it's fun to play with them properly isn't it?

Sounds like you actually had a lot of cognitive effort this week. Plus your daughter's accident must have been a shock? ( It's great that you talk to patients in rehab.)

My neuropsychiatrist says that cognitive and physical fatigue are bi-directional. So mental effort makes you physically fatigued and vice versa. Is that what happened?

I find that hard to balance. Bizzarely I seem minimally need half hour laying down doing a mindfulness exercise ( and usually fall asleep) every morning, even on a good day.

Hope tomorrow is better 🌸

[bexx87 in reply to Painting-girl]

Heres some youtube vid on brain injury and how to cope with it, her channel is called Brain Recovery Coach:

m.youtube.com/channel/UCw_4...

[Glenquoich in reply to bexx87]

Good call!

I like the Brain Injury coach videos. I try to watch one or two per week (when I remember). I've found she's explained difficulties I've had for decades without realising what's causing them.

I also find that watching her solution focussed approach leaves me with at least a sliver of optimism, even at the worst of times.

[Painting-girl in reply to bexx87]

Thanks 😊

[swedishblue11]

Hi; I've been stuck in a "vice" of severe fatigue for a few days now so know how you are feeling...I'm only just surfacing from my pit and finding my way back to my "baseline" today. I haven't managed a proper sleep for three or more nights, which is normal when I've hit a crash. Awakening in the early hours (2-3 am), I drink tea and manage another couple of hours of sleep. My ANS plays up at these times too - I'm hot and chilly at the same time. My bleed happened around the circle of willis, so can only think my hypothalamus and Amygdala were impacted. Weather also affects my energies; high pressure fair to good; low pressures - poor.

I think you've hit many "trigger points" with phone calls and unpleasant emails to write. My advice - stay away from the computer and phone for a while until you resurface from the mire. Then start gently back with resuming what's important, taking frequent pit stops. It might be that you've neglected your neuro battery for some time so you need complete quietness and rest...no cognitive workouts. Don't squander your energies on things that don't matter for a while. I'm writing all this as I need reminding too!

I hope this is what its been and you don't have any endocrine problems which also cause havoc with energy. Do you have regular blood checks for pituitary/thyroid/parathyroid/adrenals, etc? It might be a good idea to get these checked.

Good Luck and stay rested!!

[Glenquoich in reply to swedishblue11]

I've never had my endocrine system checked. I'm reluctant to, it's a psychological barrier for me.

After 33 years of being diagnosed from everything other than the after effects of my TBI; from psychosis to malingering to 'clinical fecklessness'; and then having the full extent of my condition confirmed in 2017, I'm always reluctant to approach my GP with anything 'new'. I ended up suffering my current bowel condition for more than 5 years until it got a lot worse before approaching my GP about it and getting a private referral to a Gastro consultant. I'm having an awful time with the NHS at the moment trying to get my issues recognised to the extent that I now have politicians fighting them on my behalf. (it's in my 'biog').

I feel like I'm being a 'pain in the backside' every time I approach my GP about anything. It took an OD last year before mental health services became involved at all and it appears to me that there is a certain stigma attached to me, owing to my interaction with the private sector healthcare (some through my wife's insurance, some through a remortgage).

The hand washing I've experienced from a significant section of the medical profession would give Pontius Pilate a run for his money and I'm sick and tired of fighting. I'll be sending them bottles of Carex for their Christmas.

Just now it feels like my body is giving up.

[Painting-girl]

Rest up and recover from this crash, and wait until you can find your new baseline of activity that you maintain without being exhausted first, even if it is super low, and then start to take it very gently from there. Mega tedious, but you can get there, it sounds like you had a burnout.