Sacked because I can’t stop sleeping

[desperateexhausted]

Posting here for traffic and NC because I’m ashamed and furious with myself.

So I haven’t been sacked but if I don’t get a handle on the problem I’m heading that way. I have a job with regular daytime hours (no horrible shift patterns, no very early starts or late finishes) and I can’t manage it.

A week of regular 9-6 work absolutely exhausts me to the point that I have in the past fallen asleep in my clothes the moment I got home, not eaten any dinner and slept through til the next morning several times a week. Some weekends I sleep for almost the entire 48 hours, emerging only to use the toilet or microwave a ready meal. I’ve had countless sick days (probably over 20) in the last year because I’m sometimes so tired that I can’t see straight, I feel nauseous and dizzy when I sit up and the fatigue is so overwhelming I feel like I’m being crushed.

I also sometimes (often) sleep through the morning and simply don’t turn up at work. I have two alarm clocks going off right next to my head and they don’t wake me, particularly if I’ve had a night of insomnia (which I also, somewhat ironically) suffer from. This has been going on since my teenage years (I’m now in my 30s) and affected every single job I’ve had - I’ve had probations extended, been sacked from freelance contracts, and now I’m on very thin ice at work. I’m outwardly a professional and successful person but I can barely hold down a job because I cannot stop sleeping and I’m at my wits end. Chronic fatigue has been mentioned by a previous doctor but wasn’t followed up for reasons beyond my control.

I don’t know what to do. I don’t want to live like this. I’m not exaggerating when I say it’s ruining my life and will ruin it even more if I lose my job (which, frankly, I deserve to). I don’t want special treatment from work, I know how ridiculous it sounds as a grown adult to say ‘sorry I slept through my alarm) 20 odd times a year. I would chop off a limb for an official diagnosis but every blood test I’ve had for the obvious possible reasons comes back completely clear (and I’ve had a lot of blood tests for this over the years).

Has anyone experienced similar and found a solution? It’s getting to the point that I’m terrified every time I go to bed on a weeknight that I won’t wake up when I need to, which in turn keeps me awake worrying, which then disrupts my sleep even further. Any advice would be very, very gratefully received.

@DaisyDreaming

Glad she’s referring you. Do you have other symptoms? I saw lots of people suggesting CFS but that goes hand in hand with things like feeling like you have the flu, feeling really unwell after doing something and pain, not just over whelming fatigue. I hope they get to the bottom of it for you

I do have fairly frequent sore throats and I went through a period of getting tonsillitis twice a year for about three years! I have dizziness and ‘brain fog’. She said she strongly suspected CFS or fibromyalgia but wants to refer me for more tests/scans. I’ve also got to get my NHS GP to email the results of my most recent blood test so a specialist can see what’s been tested and what the levels are.

@ScienceSensibility

Good to see your update, OP, and I’m delighted the private GP has been so helpful, and signposted a future diagnosis.

I have to say, you have done amazingly well to keep going this long.

You must be a great asset at work, even if they are frustrated at the moment. Reading what you have been putting up with, I just take my hat off to you that you’ve maintained a professional career.

I truly hope you are feeling better soon. 👍🏻

Thank you that’s so sweet of you! I think I do good work when I’m actually awake to do it 😂

I honestly look back at my career and wonder how the hell I’ve maintained it. By the skin of my teeth, mainly. I’ve definitely had a lot of awkward conversations explaining how I, a grown adult, managed to sleep in til 4pm and miss an entire shift. The PP who described waking up and it being dark and the clock saying 4, this is literally me probably every other weekend!

My hours aren’t even bad. I work 10-6 which is frankly a luxury work schedule and it cripples me. It’s been slightly better wfh, but I find even the mental energy needed to do good work makes me tired. I used to want to join the police but I knew I couldn’t rely on myself to turn up to a shift on time and that a block of 12 hour shifts would probably almost kill me. (Tbh I’m glad I didn’t given the behaviour of the police lately but that’s another story...)

Oh and the pp who’ve said I could have my driving license confiscated if I have sleep apnoea... I’m afraid I’ve committed the mumsnet cardinal sin of being a non-driver 🤪😂

Stock up with Fortisip or Ensure for when you're too tired to eat. The thing about mental energy draining you physically is typical CFS.

God OP that's just brutal.
I'm so glad I scrolled to the bottom and saw an albeit faint and far away light at the end of the tunnel - hopefully!

Please keep us updated.

I know a few people who have suffered with awful fatigue like you, it's been different reasons, PoT's, ME and another that I can't think of right now.
And I always thought that it's just such an awful waste of life to feel and be within that, so bloody good for you for not stopping the fight to be heard.
Upwards!

You can also do at home blood tests to see if any vitamins are lacking with Thriva.

Is it your insomnia that's causing it?

Have you been tested for ceoliac disease? I used to fall asleep sitting up before I was diagnosed. Please try acupuncture - it helped me stop fibramalygia developing.

I would suggest vitamin b12 test as well.

How are you when you experience strong emotion? Do you ever feel weak / floppy when this happens. has anyone seen you fall asleep that can tell you if you stay in a light sleep or do you go very quickly into a deep sleep.

The overwhelming fatigue, insomnia, sleeping at length but still exhausted. My partner has narcolepsy with cataplexy and has these symptoms mentioned, but narcolepsy can also occur without cataplexy. cataplexy is the loss of muscle tone in response to strong emotion.

It takes approx 60-90 minutes for a person without narcolepsy to hit the deep sleep stage, my partner when tested hit deep sleep stage within 1-2 minutes. The insomnia is another side to it.

Sore throats and brain fog can also be linked to this as it's auto immune. It doesn't show up on bloods either. See how you get on with this?
www.narcolepsy.org.uk/resources/epworth-sleepiness-scale

I haven't read the full thread but might be worth a look.

OP, my husband was diagnosed with sleep apnoea and given a CPAP machine a few years ago now. The difference it has made to his life is enormous, we think he has had sleep apnoea for decades but it wasn’t really obvious until recently when I realised he was stopping breathing when snoring. He was ALWAYS tired, now he has so much energy, it’s amazing. He has also been given permission by the DVLA to keep driving so you don’t always have to stop on diagnosis - I know you don’t drive but thought this might be useful info for anyone else reading who is similarly affected.

Really hope you get some answers soon. You’ve done brilliantly to keep working full-time when feeling like this. Well done!

@Chisandbiscuits

OP, my husband was diagnosed with sleep apnoea and given a CPAP machine a few years ago now. The difference it has made to his life is enormous, we think he has had sleep apnoea for decades but it wasn’t really obvious until recently when I realised he was stopping breathing when snoring. He was ALWAYS tired, now he has so much energy, it’s amazing. He has also been given permission by the DVLA to keep driving so you don’t always have to stop on diagnosis - I know you don’t drive but thought this might be useful info for anyone else reading who is similarly affected.

Really hope you get some answers soon. You’ve done brilliantly to keep working full-time when feeling like this. Well done!

Similar story here regarding apnoea.

As PP say there are quite a number of very treatable conditions with these symptoms, its shocking that in 15yrs your GP still hasn't taken them seriously and expects you just to live like this. Continue with your specialist but look for a better GP as well.

I believe the 'cut off' for licence withdrawal is initially more than 16 stoppages per hour, I was under this so I kept mine. I don't know if you can get it back with further sleep studies too.

@52andblue

I believe the 'cut off' for licence withdrawal is initially more than 16 stoppages per hour, I was under this so I kept mine. I don't know if you can get it back with further sleep studies too.

I have 25-30 stoppages (literally diagnosed and found out last week) and the doctor said because of my answers to the question and that my job doesn’t involve driving or machinery she was happy that DVLA didn’t need to be informed.

I think it’s more nuanced than a simple threshold.

*answers to the questions on the pre-study questionnaire

Sorry to butt in but @NotanotherboxofFrogs*
this sounds like me “ It takes approx 60-90 minutes for a person without narcolepsy to hit the deep sleep stage, my partner when tested hit deep sleep stage within 1-2 minutes. The insomnia is another side to it.”*

I sometimes start dreaming as soon as I nod off too, so I can be on the sofa I’ve nodded off for a couple minutes but I’ve dreamt in this time. I’m starting to realise this isn’t normal...

I’m surprised that you’ve managed to hang on at work-you must be good! Your GP sounds shockingly incurious. Fingers crossed you get some useful help very soon.

Omg please see the doctor, it is not normal to sleep that much x

@Nonpayingdads

I’m surprised that you’ve managed to hang on at work-you must be good! Your GP sounds shockingly incurious. Fingers crossed you get some useful help very soon.

Honestly I’ve never been in trouble for it beyond some disapproving words. My work (and previous jobs) know about my mental health issues so in that respect I am protected as it’s classed as a disability. But the sleeping isn’t caused by MH issues and I don’t want to lie and blame it on them just to avoid consequences because that won’t solve the problem.

Last week was the first occasion my boss has been cross. The only consequence she’s put in place is to informally check in with her for a period of time. It honestly terrifies me that some workplaces would take disciplinary action if you have 10 sick days a year because I don’t think I’ve ever had under 10 in my life

This sounded like me several years ago. Please visit the B12 Deficiency / Pernicious Anaemia Website for details. Drs are woefully uneducated regarding this. I had to fight to get a diagnosis and then necessary medication and wouldn’t have recovered if not for their help.

Have you tried going to a sleep clinic?

I just noticed you said you possibly had low phosphate levels - that is also another symptom of hyperparathyroidism so definitely ask your new doctor about your vitamin d, calcium and parathyroid hormone levels.

Yes lots of workplaces track sick days and 'too many' results in dismissal. Really really harsh. I don't agree that it is necessary.
You need a diagnosis and to start the correct meds and your life will change!

@Howzaboutye

Yes lots of workplaces track sick days and 'too many' results in dismissal. Really really harsh. I don't agree that it is necessary. You need a diagnosis and to start the correct meds and your life will change!

This really scares me. I know I’m really lucky to not have worked somewhere like that. I totally agree that people who are genuinely taking the piss need consequences but I think it’s usually fairly easy to make a judgement on who’s genuine or who isn’t. I’ve always been completely open with my workplaces about my issues and symptoms. I spoke to my boss again this morning and she was fine, she was pleased I’m addressing this with a new doctor and just wants me to keep her updated so no official action is being taken. She’s also said that if I feel a flare up coming on and need to start work later or miss a meeting that’s fine if I can give her some notice. I’m going to try and keep to regular hours and routine as that seems to help a bit rather than giving in to the urge to sleep (although sometimes it’s not possible to fight it off, or I wouldn’t have started this thread!) but I’m obviously very appreciative to have such a lovely boss.

I had sleep apnea and it’s exactly how you described. Waking up gasping, very dry mouth and snoring. I would fall asleep during the day so suddenly, it was awful. I remember struggling so hard to stay awake in different circumstances and I could not stay awake if I sat down for too long. I had tests done for my breathing overnight with a machine and they said it was really bad apnea. I was thinking I was sleeping well but really, really wasn’t. I had to have my tonsils and adenoids removed. This was a few years ago and I’ve not had any problems since. It was a huge relief. Not sure if you could ask them to check this out for you too? I saw you are hopefully getting help at last!

I haven’t read the full thread but I have Klein Levin Syndrome and could have written what you have. Its extremely rare and there’s no official treatment, just support and lifestyle management. Sleep studies also showed that I don’t go into the restorative deep sleep at night, I somehow skip this phase so I’m not getting the restful non-dream sleep needed to keep me going. You definitely need a sleep study done as a minimum by the sounds of it.

I could have been you two years ago. I would literally fall asleep anywhere (park bench, loo, in the middle of conversations, bus, car). I needed a nap after work just to have some energy to cook a meal and get through the evening. I would sleep non stop over weekends. My sleep apnoea was found by chance after I ended up in hospital after an accident (caused by lack of concentration and extreme fatigue!) I was late 30's when I was diagnosed and I don't smoke, don't drink, was not overweight, didn't have large neck circumference and I'm female. I looked completely out of place 🙈 Two years on and I'm using my CPAP machine daily and my quality of life has significantly improved.