Do I qualify for the 4AM club?


#1

i’ve been up since 4.30 am do I qualify for the 4am club? I hate this PD. I’m self employed 48 and totally fed up with this. When you are self employed you realise that all the tax you have paid means nothing, there is no help out there, you have to carry on working. All the test they give you means nothing because you push on. I’m not sorry that I sound a little P off, tomorrow or should I say today I will have to pretend that nothing is wrong and just carry on. You have to make an appointment to see your Doctor, your Pd nurse is off sick and your meds only work on it’s own terms.
I will have to work today, I will drive pass the man with his new car and new walking stick on the back window just incase,but why does he or me have too pretend just to get any help. If you have been diagnossed on meds and at times can’t move then we should get the help.
what can a person do? Do we call the number that I probably will be given, do we talk with the bank manager which is just out of school, do we talk with our partner who just nods and says it’s ok. Talking doesn’t pay the bills… this is the 4am club.


#2

Great Post Reudyfam.
You’re in.
I totally get what you’re saying and I think you have to be crawling on the floor foaming at the mouth talking in strange tongues for friends family and workmates to take you seriously.
See you around 4am mate.
Hubby


#3

Hi, I cannot sleep beyond 03:30 - 04:00 each and every morning, I know I’m disturbing my wife but I cannot just stay in bed. I get up as best I can and start a very long day…


#4

I don’t fit the 4 am model, my pattern is awake until 3 ish or thereabouts then awake again around 6, some days its 2ish until 5. Either way dont remember the last time I had a proper nights sleep, mind at 61 I choose to think at least some of it is age related but who really knows.


#5

Well here I am as usual.
3.44 and wide awake. I took it on myself to move into my own room shortly after my diagnosis. Now I sleep as and when I can.
I have work tomorrow so tonight I hope to be able to get 4/5 hours. If I need it I’ll grab an hour when I get home. I don’t get stressed about it any more.
Hubby. 3.55 am


#6

Hi hubby

Well I’ve been up since 1 45 like you I don’t stress about it I just get up and have my cereal.
I do realise though I’m always disturbing my hubby who has work to go to.

Babs


#7

I think I qualify for the 4AM Club … and the 1AM Club … and any other clubs out there that operate on an hourly basis the moment night comes. I feel so much sympathy for your situation and the frustration you feel. I work for my Mum who has had PD since diagnosed at aged 63. She is now 90 and in Stage 3 of her disease. Her condition is worsening now but I know her likes and dislikes too and although this helps it does not help the feeling of helplessness. On the whole Mum is very caring of me because she knows that I’m doing my best for her, caring for her 24/7, and not getting enough sleep at night. I’m not moaning but at times I feel like running off for a break but it causes heartache and panic in Mum so I won’t. There is a very good Parky nurse here but not apparently when you want her 'cos then she’s out, busy or just doesn’t answer the phone or reply to the texts. Sadly, our world today is gripped with selfishness and fear and surely we must feel sorry for them. I’m praying for you Reudyfam.


#8

Seems like lots of us with pd have a similar problem with sleep, i can only sleep when im really tired, so no point going to bed unless i am. some times sat up till 3am, but its the only way i can get a good sleep for 5/6 hours wake up refreshed. i use to be able to sleep for England, but not now.


#9

Fully paid up member of 3am club. Had a dose of diarrhoea recently, the meds went straight through, result 8 hour sleeps. So proves it’s the meds not the PD


#10

3am club member here, just turned 46 and working full-time like there is no such thing as PD… and I am wondering where does all the energy to move on come from… definitely not from sufficient sleep.

I manage it pretty well by having my tablet with me all the time to surf/read/watch/listen/play in bed until the morning comes, but reading all the posts here I realize how bad this situation is, and there is nothing you can do about it…

At least I am not the only one… Good morning!


#11

Time, it’s strange we think i’s fast, slow,correct,wrong and a nuisance. could we do a week without time and just carry on? Should we go with the PD clock ? I don’t think we can, so many other people are involved I can’t move around the house without everything you do being on full volume and you think you wake the house and the street.
Yes you might feel better for awhile without the meds and your body is tired and you get to sleep, but if we are honest with ourself we are all in the PD time it rules everything, and when you need to work PD says it’s time to sleep… I might be going on too much here but I know which time i’m on.


#12

The notion of a PD clock appeals greatly and I think I am lucky in that timing is generally less important when not being ruled by a work clock nor do I disturb anyone if I am busy ‘doing at silly o’clock’. It does help I think and I can mostly just go with it and not mind it too much.


#13

Most of the problems why people don’t sleep let’s say you got to bed at 10 or 10.30pm and you take last meds at 9pm ,you will just be coming On as pd meds take half hour to hour to kick in so you will find it totally impossible to go to sleep as your pd meds will be just working at there max .So the best time to take last meds say 7.30 or 8pm ,so by 10pm your meds will just be levelling out by time you get in bed your meds should be wearing Off so then hopefully you will go to sleep fine.And if you take CR slow release take them just before you get in bed .hope this helps ,if no luck go to gp or pd nurse see if they can give you something to help you sleep.


#14

I got up at 2 o’clock this morning, started doing a few things, then too late to go back to bed, so beginning to feel apathetic now, if I sleep now won’t sleep again before midnight, then wake at 4…

I’ve been told Parky turns your body clock up side down, tries to make you nocturnal.


#15

I have been in this club for a while now. Think positive, 3 or 4 am is a fantastic time to be up and about. No noisy neighbours, in the summer what a treat to watch the sun come up and the world come to life. Give me this time of day anytime it is truly wonderful.


#16

No wonder sleep deprivation is used as a form of torture. To add my penny worth to this thread, having been awake since about 4, I find that a) my attitude towards being woken , or waking naturally at an unearthly hour makes a big difference, as does the level of sleep I was in …coming suddenly out of deep sleep is awful and very disorientating; esp when as a carer I have to deal with whatever caused my husband to call me. gradually “ coming to” is more humane but either way, one is not getting enough of the right kind of sleep, and that impacts hugely on cognitive and emotional functioning. At such times we need to have realistic expectations of what we can do and put other people in the picture so that they don’t misunderstand what is going on.
It is very hard, I find, to accept functioning at a much lower level than one knows one is capable of, and to find one’s world shrinking accordingly, but acceptance does seem to be part of the key to managing and having more realistic expectations of what one can do.
I take my hat off to the self employed and main bread winners of you out there.
Pippa


#17

I take my meds at 6pm, go to bed about 11… :mmmm.; still wake up :


#18

Then I would advice you to see pd nurse or go, as your body can not function right up do not like giving sleeping tablets out ,but if you talk to pduk nurses they are more understanding.


#19

Meant to say gp do not like giving sleeping tablets out


#20

My mother takes her last PD meds by 8pm. She then sits in bed and reads or listens to the radio, or more than likely I sit with her until she feels tired. She has refused to take sleeping pills - even herbal ones.
As her carer and as her needs have changed my own body has changed with her PD timing. Now we turn the early part of the night into ‘‘late evening’’ and we sleep from around 3-4am until we wake up.
Traditionally we are clock watchers and as workers we must adhere to that but now it does not matter so we please ourselves.
I have great admiration for those with PD still working. It must be very hard to juggle as I see PD first hand through working with Mum.