• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Sleeping arrangements, etc, trouble with family

frozenborderline

Senior Member
Messages
4,405
I have two options for a room to sleep/live in in our house. One of them is upstairs, and as I am too tired to go up and down stairs without difficulty, living in this room would mean not getting any sun at all, and having to have parents bring me lots of things, food, drink, etc., constantly.

The other room is on the first floor. it's warmer and the bed is more comfortable. I can get things for myself from the kitchen sometimes, when not too tired, and I can go outside to get sun. However, it's right next to a bathroom with a shower, and my family also stores some of their clothes in here. So every morning at 5-7 AM they barge in and start making a lot of noise, and I just can't sleep through it. Sleep is probably the msot important thing for me but I don't feel like I can compromise on sun either.
There is another bathroom they could use for showers, they just don't like to. I just kind of asked them to compromise, like not to never come in in the morning, but to try and be mindful and not just barge in and then leave the door open and have yelling matches in the AM. Like treat it like they have a guest, or a severely ill person that needs rest...

Also, they could totally move the clothes to another place.

Anyway, I"m looking for both practical advice on dealing with this decision, interpersonal advice, and advice for practical strategies for coping with the noise and still sleeping. I have earplugs but they don't seem to help at all.

Do you guys think a white noise machine would help, better earplugs, a combination, etc?? Am I being unreasonable wanting them to change habits slightly so I could sleep better?
 

Plum

Senior Member
Messages
512
Location
UK
A few ideas come to mind:
white noise or a fan - I sleep with a fan and air purifier on
could you sleep upstairs and use the downstairs room as your day room? i.e. go up to sleep only
I don't think your requests are unreasonable but family is complex....
 

Howard

suffering ceases when craving is removed
Messages
1,332
Location
Arizona
@deborted13 - these were a lifesaver for me back during the "all stimuli is painful and overwhelming" phase of the illness 2016-2017 - Holmes earmuffs
3M-Earmuffs-With-Liquid-Foam-Earmuff-Cushions.jpg
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
Those earmuffs @Howard look exactly like the ones I wear when I use the leaf-blower, as otherwise I get bad ringing ears for hours afterwards.
Yours are probably even better than mine, but I can vouch for these cutting out sounds! I don't even hear a car go by me (10ft away) when I am working in the garden. I can just about hear the noisy leaf blower through them but it sounds a mile away.

@debored13 what kind of earplugs do you wear? Foam ones (for me) are less than useless. I use wax ones, and warm them a little before putting them in. They cut out noise pretty well.

So...have you spoken to your family about the shower room/clothes room issue?
They are probably forgetting, especially if they are children (?) But very kindly telling them the position you are in, and that you still need to be sleeping when they are getting ready in the morning, is not unreasonable.
Some people who are naturally early risers just don't "get it". I always find that in my life. Although what is hard to understand I don't know. If I know someone is an early riser, if I were awake at midnight when I know they are sleeping -for example -I would creep around!
Asking them if they could please use the other bathroom and re-locate the clothes (for your sake) isn't a horrible thing to ask for either, especially if asked kindly.
Do they know how sick you are?

Things that are no bother for anyone else, can be things we just can't do, or live with much as we wish we could.
 

Mary

Moderator Resource
Messages
17,334
Location
Southern California
I just kind of asked them to compromise, like not to never come in in the morning, but to try and be mindful and not just barge in and then leave the door open and have yelling matches in the AM. Like treat it like they have a guest, or a severely ill person that needs rest...
How did they respond when you asked them?

I know your dad especially I believe has trouble accepting the reality of this illness so I know this may be a touchy situation.
Do you guys think a white noise machine would help, better earplugs, a combination, etc?? Am I being unreasonable wanting them to change habits slightly so I could sleep better?
I sleep with a Hepa air filter running all night and it helps. My former neighbor had 2 chihuahuas that would sometimes bark in the middle of the night (little yappy dogs!) and the filter was great at filtering out their barking. Even if it doesn't screen out all the noise, it diffuses it somehow so it blends in and is not so starting. And it seems with a good pair of earmuffs combined with a filter (and maybe a fan too?) would go a long way towards helping.

I don't think you're being unreasonable at all. I would have difficulty if my bedroom was upstairs too.

I don't know if you have a good doctor; if you did, perhaps he or she could talk to your parents or write them a note about this? I know you're in a challenging situation and don't know the best way to approach this.
 

Dechi

Senior Member
Messages
1,454
Have you considered having a stair lift installed to go up and down the stairs ? I’ve had one installed in my new house and it’s a blessing. It would give you so much more possibilities. Of course you need money to do so, but it’s well worth it if you can afford it.
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
I am sorry @debored13 as I didn't understand your situation in your house. @Mary made it more clear. Ignore what I said as it wasn't helpful under the circumstances.

@Dechi ....a stairlift is a good idea.
 

Judee

Psalm 46:1-3
Messages
4,461
Location
Great Lakes
Have you considered having a stair lift installed to go up and down the stairs?

I often see these on craigslist for around $600. Still quite a bit of money but cheaper than new. So far the ones I've seen look like they don't have a lot of wear. We keep discussing getting one for my mom. Just an idea.
 

frozenborderline

Senior Member
Messages
4,405
Have you considered having a stair lift installed to go up and down the stairs ? I’ve had one installed in my new house and it’s a blessing. It would give you so much more possibilities. Of course you need money to do so, but it’s well worth it if you can afford it.
I'm down to about 40$ to my name, so I don't think this is an option. I can't even afford to buy a white noise machine at the moment, but I'm going to try and figure out how to do that.
 

frozenborderline

Senior Member
Messages
4,405
How did they respond when you asked them?

I know your dad especially I believe has trouble accepting the reality of this illness so I know this may be a touchy situation.

I sleep with a Hepa air filter running all night and it helps. My former neighbor had 2 chihuahuas that would sometimes bark in the middle of the night (little yappy dogs!) and the filter was great at filtering out their barking. Even if it doesn't screen out all the noise, it diffuses it somehow so it blends in and is not so starting. And it seems with a good pair of earmuffs combined with a filter (and maybe a fan too?) would go a long way towards helping.

I don't think you're being unreasonable at all. I would have difficulty if my bedroom was upstairs too.

I don't know if you have a good doctor; if you did, perhaps he or she could talk to your parents or write them a note about this? I know you're in a challenging situation and don't know the best way to approach this.

yeah it's partially my dad but it's also that my sister is severely anorexic and demands a lot of time and attention, so everyone seems to be really, really stressed and even pretty reasonable requests or requests that start out with a compromise seem like a huge imposition to them. It's kind of absurd to me because I've almost given up on the idea of getting a lot of help from them for getting better, and given up on getting better, but want the small comfort of being allowed to rest properly and be left alone.
 

frozenborderline

Senior Member
Messages
4,405
How did they respond when you asked them?

I know your dad especially I believe has trouble accepting the reality of this illness so I know this may be a touchy situation.

I sleep with a Hepa air filter running all night and it helps. My former neighbor had 2 chihuahuas that would sometimes bark in the middle of the night (little yappy dogs!) and the filter was great at filtering out their barking. Even if it doesn't screen out all the noise, it diffuses it somehow so it blends in and is not so starting. And it seems with a good pair of earmuffs combined with a filter (and maybe a fan too?) would go a long way towards helping.

I don't think you're being unreasonable at all. I would have difficulty if my bedroom was upstairs too.

I don't know if you have a good doctor; if you did, perhaps he or she could talk to your parents or write them a note about this? I know you're in a challenging situation and don't know the best way to approach this.

My PCP doesn't really know what's up, but I do see Susan Levine in NYC. She's considered a very good CFS doctor and I like her, but communication with her is already sporadic and tricky (she seems like she's got a lot on her plate and is a little scattered, esp. with long distance patients). I doubt she would do this but I can talk about it.
 

frozenborderline

Senior Member
Messages
4,405
@deborted13 - these were a lifesaver for me back during the "all stimuli is painful and overwhelming" phase of the illness 2016-2017 - Holmes earmuffs View attachment 29673
I'll have to look at those howard. They look great. I usually sleep on my front and side, so sometimes earmuffs would be awkward, but I could maybe train myself to sleep on my back. They would at least be a help with resting comfortably during the day.
 

Hufsamor

Senior Member
Messages
2,768
Location
Norway
I'll have to look at those howard. They look great. I usually sleep on my front and side, so sometimes earmuffs would be awkward, but I could maybe train myself to sleep on my back. They would at least be a help with resting comfortably during the day.

It's a kind of habit.
I sleep on front and side as well, but I'm modelling the pillow each time I move.
An old and tired pillow is better than a new, I think. More easy to lump together.
(My English is rather poor, I hope you understand what I mean)
I don't know what I would do without my earmuffs at night.

From time to time, my ear gets a bit squeezed, tho.

You are not at all unreasonable.
But it sounds like life might is a bit overwhelming for your family.
Maybe they have as much as they can take?
And therefore they might be a bit unreasonable...

As for the clothes....
I don't really know your family, so this might be completely wrong....
But if you have tried to ask nicely a couple of times, I would perhaps just say: I really need those clothes moved.
At Monday (or whatever day you choose) I'll just lay them on the couch.
And then you do, if you have the energy.

(On the other hand, you living in their house you really need to be as best friends as possible, so you might need to think it throug)
 

jesse's mom

Senior Member
Messages
6,795
Location
Alabama USA
I had to make very clear boundaries for my family to really respect my needs for rest and no stress. It has been a long struggle that is settled now, mostly because they see what a difference sleep and no stress makes for me.
(we all slip up from time to time!)

I go to bed very early and that works for me. (9pm bedtime gives me time to sleep and wake up first)
And I sleep with a box fan running for white noise.

I am now in the place that I take part in some family things with a smile. I hope you and your family can make progress in this very difficult issue.

Illness is such a hard thing to trudge through!
 

Mary

Moderator Resource
Messages
17,334
Location
Southern California
yeah it's partially my dad but it's also that my sister is severely anorexic and demands a lot of time and attention, so everyone seems to be really, really stressed and even pretty reasonable requests or requests that start out with a compromise seem like a huge imposition to them
That's a tough situation all the way around - as a parent, I know it would be extremely stressful to have two children with serious health issues. And at the same time I know it's a very difficult situation for you.

I was just thinking - there are apps for white noise. It might be a cheap way to help block some of the noise.
 

frozenborderline

Senior Member
Messages
4,405
That's a tough situation all the way around - as a parent, I know it would be extremely stressful to have two children with serious health issues. And at the same time I know it's a very difficult situation for you.

I was just thinking - there are apps for white noise. It might be a cheap way to help block some of the noise.
i'm (or I guess I was) a musician and actually know how to make white noise and have some saved on my computer but I don't know if I have a good enough speaker/setup to make it so that would play all night and loud enough, I might just save up for a white noise machine if they're louder
 

Dechi

Senior Member
Messages
1,454
I'm down to about 40$ to my name, so I don't think this is an option. I can't even afford to buy a white noise machine at the moment, but I'm going to try and figure out how to do that.

I just bought a white noise machine on Amazon for 20$, but while waiting for it, I found some really nice, 10 hour long, white noise recordings on YouTube. I play them on my tablet all night (or until the battery dies).

This one reduces my bass tinnitus by 90%, it’s really my favorite.


This one is also nice, and it has a black background, so even better if you like it.



This white noise has improved my sleep so much ! It’s still not refreshing, but I don’t spend hours in bed with my eyes open...
 

Dechi

Senior Member
Messages
1,454
I often see these on craigslist for around $600. Still quite a bit of money but cheaper than new. So far the ones I've seen look like they don't have a lot of wear. We keep discussing getting one for my mom. Just an idea.

Actually the one I bought was used, but it looks like new. I saved 500$ and I still have a 1 year warranty on it. Buying used is a smart thing to do. Often people don’t use them for very long, and you only sit on it for 30 seconds before you get off.