Results of Sleep Test from June 2022

[Sunnypad]

AiY "I seem to sleep from 2am to about 11am."

That's sort of me in terms of the bedtime anyway. Never sleep that long though.

I hope this works out for you. I have had a fair bit of experimentation with meds and it can be quite surreal.

Sorry to hear about your wife's health, that's gotta be painful. I had fractured vertebrae - possibly in the time there was no Fool board? My stomach couldn't tolerate painkillers, I hope hers is okay. It was the only time doctors were offering lots of good pills and I couldn't take them!!

You should be all set by New Year I hope.
S

[AsleepInYorkshire]

I've had quite a severe bout of bronchitis, my covid booster and the side effects of the pregabalin to deal with. Apart from feeling absolutely exhausted I've been getting very frustrated.

All the symptoms and side effects are beginning to lessen.

And ... I am sleeping a little better. Also, despite feeling totally washed out and exhausted I am not sleeping during the day like I used too. I am closing my eyes and resting but I am not falling asleep. I've not had much energy because of the chest infection and the covid booster so I can't say with any particular certainty how well I really am doing. Or not.

I'm still not feeling tired until 2am in the morning, but am [just about] coping with getting up at about 8am. But it does feel like I'm coming round from a general anesthetic.

As much as I've wanted to "push" and test my energy levels and get stuck into life I've just not been able to. Not just yet.

My good lady has slept far more than me over the last 3 weeks. Her leg is still giving her some pain but that was to be expected. She seems to be heading in the right direction regarding her recovery and hopefully with a little time and patience the swelling caused by the operation will reduce and she will start to feel the benefits. I was thinking of giving her a new lawn mower for Christmas, but having reflected on that for a nano second, I'm not sure she'd enjoy putting it together . My badness So I'll stick to the tried and trusted alternative - a socket set. She loves Harry Potter so I'll get something associated with Harry Potter. Lego have brought out a new set. It's Hogwarts Express and I think she'll enjoy snuggling up in the lounge with our daughter, watching Harry Potter movies and making her Lego model.

I'm looking forward to Christmas. I'm sure my two girls are too.

AiY(D)

[Sunnypad]

Sorry to hear that
I had the lurgy too, thought I'd shifted it but now feeling either residual ear pain, or have a new ear infection.

All quite confusing with facial pain, especially as I grind my teeth.

I do very little work at the moment, which is such a blessing. It certainly helps with sleep. Are you finding that? I hope your timetable is working for you.

I quite fancy trying lego, but storage issues. I have started doing those "scratch art" thingies but it is making me think I might need an eye test!!

[stewamax]

I have some experience of Pregabalin (and Gabapentin) - not for me.
Its primary use is as a nerve pain blocker. This is why it is used for shingles, inter alia.
Pregabalin can work at surprisingly low doses (the standard 'low dose' is 75mg) but this is very patient dependent.
Its useful side-effect - and whose precise mechanism is not well understood - is as a soporific, although it is not a sleeping pill.
And for dispensing it is a 'controlled' medication.

RLS is susceptible to low doses of co-careldopa (trade name Sinemet) that is the standard medication for those with dopamine deficiency such as those who present with Parkinsons signs.
Whether RLS is also susceptible to medication for deficiency of the other common neurotransmitter acetylcholine is very unclear, but a small (10mg) dose of Donepezil hydrochloride (used to treat Alzheimers patients) may be of help.

As always, get your GP's advice and/or see a consultant neurologist; my suggestions above are only food for thought

[servodude]

I am sleeping a little better

You've had a fortnight since that post...
how's it going now?

N.B. you can tell me to F.....ff for asking. I'm a big boy and can take that

But... we've all heard stories of folk getting misdiagnosed and/or being forgot
We (on this forum) can't do much about the medics "getting it wrong" but we can address the "no one notices"
- and hopefully, where appropriate, convince folk that they don't "do it alone"

So.. I hope you're asleep soundly when you need to be
- but if not, you can let us know and if we can't help directly - we can at least listen to what you might want to tell us

-sd

[pje16]

N.B. you can tell me to F.....ff for asking. I'm a big boy and can take that

AiY would never do that, he's a good guy
it's great that people are decent enough to ask.
It goes a long way when you have something of concern.

[Sunnypad]

I was also wondering how AiY is doing, hopefully well.

[AsleepInYorkshire]

I am sleeping a little better

You've had a fortnight since that post...
how's it going now?

N.B. you can tell me to F.....ff for asking. I'm a big boy and can take that

But... we've all heard stories of folk getting misdiagnosed and/or being forgot
We (on this forum) can't do much about the medics "getting it wrong" but we can address the "no one notices"
- and hopefully, where appropriate, convince folk that they don't "do it alone"

So.. I hope you're asleep soundly when you need to be
- but if not, you can let us know and if we can't help directly - we can at least listen to what you might want to tell us

-sd

There's been a dark side to my journey. One that is difficult to digest, let alone talk about. Sleep deprivation really does have a huge negative impact on anyone. My condition is clearly congenital. My father had similar issues and of course went undiagnosed and without the help he and his family so desperately needed. Sleep deprivation over long periods of time brings about changes to a persons behaviour. They become irritable, paranoid and defensive, all in the extreme. Mood changes occur at the drop of a hat. The personality really does become a Jekyll and Hyde. Those closest who spend more time with this person will ultimately wear out.

I recall from an early age my fathers mood changes. I had to learn to cope with physical and emotional abuse which was consistent. Recently I have realised that his behaviour taught me to believe that it was "my job" to make him happy as if he was happy I wouldn't be on the receiving end of negative behaviours. That has followed me in to my adult years and I have an embedded belief that it is "my job" to make those who are unhappy, or moody, feel happy. I go to great lengths to achieve a positive result. But this comes at a cost to me that I really can't bear. Being awake and having the time to think about this I am now able to bring this self defeating belief under some tighter management . It's not my job to make others happy. I can ask how others are and I can sympathise, even empathise with their problems. But I can't be part of the process of making them happy as I have no control over the effort I put in. And in the "workplace" my "willingness" can and has worked against me. I've been the willing donkey far too often.

Overall I am sleeping better than I ever have. I still don't have much energy which is more than mildly frustrating. There still seems to be some circadian issue though. I don't know if this is comorbid with the RLS or a symptom of it, which with time will pass. I hope for the latter.

We have some vague plans in place which should deal with the circadian issues should it be a permanent fixture in my life. Earlier this year and as I've mentioned in other threads elsewhere on TLF I was aware I needed to step away from work and get my health sorted out, once and for all. As you're aware I was buying my daughters Christmas presents early. If nothing else they needed to be in place. I also bought a new desktop and screen and invested in some software, which if I've done my homework correctly will allow me to offer a service that will be sought after in my industry. The preparation of Bills of Quantities. The software is designed to read from drawings in either 2 or 3D. I've a lot of work to put into it. I saw a demonstration of the how the software could be used to "take off" quantities from a BIM drawing. Using a template from another job of similar nature the "draft BOQ" was created in 11 minutes. This was for a care home costing around £8m. Another couple of days of "tidying up" and that's a BoQ ready to go. such would earn a half decent fee. As I've said I've got to get the "template[s]" in place first and this will come with time as I prepare BoQ's for different buildings.

Slick. Very slick. The correct way to embrace technology. Using the software and my knowledge of what's missing from a drawing I should be able to create extremely robust BoQ's.

As I've previously mentioned one of the issues that amplifies my condition is stress. Avoidance is the route I want to take. This means I don't take on roles I've carried out previously where I became involved in "conflict resolution". I'm aiming to work from home and work about 20hrs per week. If I have valued the above service correctly it will provide a decent income. I can earn up to £53k per year without paying tax by using my personal tax allowance and pension allowance. I need £400 per month to ensure the bills are paid. Financially we're in a good place if I can bring the plan to fruition. Failing which we have assets that, courtesy of Liz Truss, are now slightly less than they should have been and have robbed us of that second comma in the valuation.

Yesterday was probably the best day I've had since ... well I can't recall. I'd slept for 11hrs straight though and didn't surface until 11am. But my energy levels were reasonably good and consistent most of the day. I'm using caffeine to help me wake in a morning if I want to get up at say 7.30am.

It was an extremely kind gesture to ask how I'm coping. It was a pleasant surprise to. Thank you, from the bottom of my heart.

AiY(D)

[servodude]

Yesterday was probably the best day I've had since ... well I can't recall. I'd slept for 11hrs straight though and didn't surface until 11am.

Result!

Keep up the good work, keep positive, and you should be in great shape pretty quickly
Especially as it sounds like all the other clearing out and tidying up you've done on the stuff that drags folk down is going great guns also.
You will soon be well placed to choose what you want to worry about - and it doesn't get much better than that

-sd

[Sunnypad]

Sounds good AiY, especially the work plan.

I think your issues started quite young, as did mine. The option to avoid stuff that stresses you out, especially work wise, didn't really seem a possibility in my 20s, but now I can avoid stress much more, which is good. I think your approach sounds fab.

[csearle]

Listening to a podcast the other day some (I think eminent) medic was suggesting that accompanying every prescription of a drug, a strategy should be embarked upon aiming at the eventual withdrawal of that drug.

Wishing you all the very best D.

C.

[AsleepInYorkshire]

Listening to a podcast the other day some (I think eminent) medic was suggesting that accompanying every prescription of a drug, a strategy should be embarked upon aiming at the eventual withdrawal of that drug.

Wishing you all the very best D.

C.

Yes. This does pervade throughout the NHS that I have been exposed to. However, my "condition" is not curable. The medication, therefore, is a choice I can make. I take it and live with the improvements it brings. Or I don't take it and live with the symptoms.

Horses for courses I think

Cheers Chris

Take care

AiY(D)

[Sunnypad]

How's things, AiY? Hope okay.

[AsleepInYorkshire]

How's things, AiY? Hope okay.

Hi Sunnypad,

Thank you for asking. I was talking to my dentist last week. Having taken the obligatory tub of chocolates for her and her assistant, merely as a bribe to be gentle with me, I told them I wouldn't ask how they both were as it just didn't feel correct. I've noticed I ask everyone how they are as a greeting. But if someone turned round and said "oh I'm not well I've got cancer", I'm not sure I'd know where to take the conversation from there. Perhaps I'm overthinking it but I'm not sure when people ask me how am I that they are expecting a true response.

Comfort Cafe is an exception and I'm more than aware that there are those who are genuine when they ask how I am.

I'm sleeping much better. Overall the excessive daytime sleepiness (exhaustion) is now gone. However, I've still got some problems with my circadian cycle (24hr sleep wake cycle). I've been getting up at 7am in the morning and slamming my face into a light box to try and create a more normal cycle. I'm having some success. I'm not falling asleep at 11pm though. I'm stuck at 2am. I do feel tired at about 7pm and sometimes need to sleep, which I'm sure doesn't help, but it's an overwhelming need to sleep.

I've still got issues with my tummy too. Some days the pain is unbearable. I've had the pains for over five years now and the NHS still haven't found out why. And currently trying to get an appointment with my GP is like trying to get an audience with the Pope. I'm in the process of trying to find a GP to replace my GP who retired a vew months ago (I can't blame her) and I'm struggling.

However, I may have an angel who can help. We have a friend who is a GP and we've asked her for a little support. She's been so kind and has spoken to one of the GP's in my local practice who has agreed to read my notes, meet with me and perhaps sort the tummy out and deal with some other smaller age related health issues.

I know there are many people who have far larger problems with their health than I do. So I have to be grateful, that there by the grace of God.

I am still hoping that I will be fit for work early next year. My work can often be high pressured, intensive and I often have to deal with conflict resolution. Perhaps not the best line of work for my condition. I'm hoping to work at home, in the long term and offer a service for small companies preparing Bills of Quantity. I want to reduce my hours to a 4 day week.

Whilst I've been sat in front of my lightbox I've had the time to prepare a spreadsheet to predict our finances. My laptop crashed early this year and I lost the spreadsheet I was using. I know it sounds very over the top but it's a comfort blanket for me. With some luck and a little effort from me I should be able to get back to earning an income and my girls can think of all the ways possible to spend it .

On 1st December it will be one year since my Mum died. Last year we didn't put much decorations up for Christmas. None of us felt like it. We've got them up this year and I know both my good lady and my daughter love to see the decorations. I'm not that bothered . My badness.

Thank you for asking how I am. My specialist doctor is calling this afternoon to discuss progress.

AiY(D)

[Sunnypad]

Hi *AiY*
Didn't realise you had stomach problems, I hope that gets sorted.

Maybe 2am is your natural time, it definitely was mine. I take so many pills now, I have lost the plot somewhat!

I hope you can find a balance with your work, that's key, and for most of us, impossible to achieve when young and starting out.

Interesting point re "how are you". A former boss made the "observation" that I always answered the question! Since then, I just do the niceties!

Hopefully the specialist appointment has gone well.

S