Boyfriend doesnt get it, i cant get to sleep .. (emotional offloading)

My boyfriend has upset me a couple of times in the past week due to his lack of being able to understand. I wonder how anyone can have a good relationship with this illness.

He's been giving me advice on my sleeping issues and when I told him I'd already tried what he suggested he said "no you havent". **sighs** after having this illness as long as I have had, I have tried so many things and hence are quite aware what helps and what does. To have him give me that response back when I tell him I've tried something already, rather then him "listen" to and "believe" me.. well its quite upsetting.

Its a common issue Ive had with boyfriends.. each time you get with someone new, they are convinced they can fix you and hence want you to try again all the things you've already tried. Why cant people JUST LISTEN :( rather then think they can fix things.

He also goes "Lots of people have sleep issues like you, all you have to do is go to sleep a little earlier each night" :eek: I guess you guys can see why I just wanted to scream at him for that comment.. He isnt listening.. I CANT SLEEP. I lay in bed for hrs and hrs and just cant get to sleep. My sleep issue is nothing to do with when i go to bed. Ive tried to fix my reverse sleep pattern in the past by getting up earlier and earlier each day but it didnt work (I just then started falling asleep during the day and are so tired and grumpy.. my body dont adjust to normal sleep cycle).

When I have managed to adjust it (after much trouble and months) to more normal time pattern.. it quickly reverts back to an almost reversed pattern as I lay in bed unable to sleep.

My melatonin lately isnt working at all :rolleyes:

Comments

The major cause of sleep issues in my opinion is that on one hand, our body wants 12 hours +- of sleep, but on the other hand, our waking rhythm is more similar to that of a healthy person - up for 16 hours and sleep for 8. You could try this rhythm, the downside is the extra fatigue, especially at the end of the day - in the extra hours at the end of the day, you need to do relaxing stuff since you will be extra fatigued/drowsy - listen to relaxing music, meditate etc.

Instead of arguing with your boyfriend, you need to explain exactly what you have tried, how many times you have tried it and ask how what he is suggesting is different and preferably any evidence that suggests that it works for other sufferers.
 
Hang in there!
You're not alone! healthy people don't understand.
I son't know what else to say besides that, right now. I'm just getting over a break up with a boyfriend who totally didn't understand (there were other issues too) so...
On a brighter note, I've been ill 22 yrs, and finally over the past 6 or so, I became able to sleep, usually
I have certain very few, non-addictive medications I take which have helped, and I think finally I just adjusted and "practiced" sleeping so much (the three-hour comas I collapsed into year after year as I attempted to keep working) perhaps I "learned how" (45 now).
So, hang in there, perhaps lovely sleep awaits! I certainly do better when I do get the 12 hrs (sometimes more) that my body needs, and worse when I don't. In fact, it's like a cycle, if I start getting "deprived" of the needed amount, my nervous system seems to get really out of whack, and then I start experiencing the old sleepless ness, as the first sign of severe PEM.
Warrior
 
it is a universal problem.....an old boyfriend still sends me new information even though I told him I did not want contact with him as its too exhausting talking to someone who is clueless - he was always into me having my amalgam fillings removed - never every learnt anything about my illness and after years of talking I realised he had not heard a word I had said - the last info was some new wonder supplement - the latest thing that will cure long list of ailments - now I am able to read and not get angry - just told him I was researching euthanasia (coz i was having a bad day) - no response to that one LOL!
 
Men like to fix things. They aren't wired to simply listen and be supportive.
Ok well of course I'm going to take issue to this statement seeing as I'm a guy haha. At any rate, though, it is definitely difficult to make someone understand your point of view, regardless of the situation, and this particular situation adds so many complications.
Snow leopard says to be logical and tell him exactly what you've tried in order to show that what he is suggesting is not any different, which I think is a good idea, but unfortunately logic doesn't always prevail. Fortunately, it seems that with enough time people do come to understand to some degree what you have been trying to tell them all along. But more often than not, you may find yourself speaking to what seem like deaf ears. And really who can blame them? Given the current state of affairs surrounding CFS, I doubt I would be any more understanding were our roles reversed. So I think a lot of time the only thing to do is to turn the other cheek. They know not what they do, and we must try with all our hearts to pardon them.
 
Snow Leopard;bt4922 said:
You could try this rhythm, the downside is the extra fatigue, especially at the end of the day - in the extra hours at the end of the day, you need to do relaxing stuff since you will be extra fatigued/drowsy - listen to relaxing music, meditate etc..
Unfortunately in my own case I get the "tired and wired" thing which goes on. The more tired I get, the more wired I get (hyper and irritable but without being able to do anything) and hence the even harder it then becomes to sleep at the times when I become over tired. The less tired I are, often the easier it is for me to sleep. (ever seen over tired children who start running around the house acting crazy.. that is how i get.. very very hyped when I get too tired).

Doing things which others find relaxing arent relaxing at all due to the ME/CFS.. music I find mentally stimulating cause it engages my brain too much and far to hard on my head.. I struggle to be able to have it on even relaxation music during the daytime as its far too much. (I cant even often listen to what most others find relaxing music as my brain engages and like works out on it). (When Im sicker.. music actually throws me into like seizures)

Laying in the bath is relaxing and it isnt uncommon for me to spend up to 4 hrs (i keep topping it up the hot water runs out after 4 hrs) in the bath at times while trying to get myself at the point where I can sleep, it doesnt help really thou. I can lay awake just resting in bed for 7 hrs before I go to sleep. I wish the relaxing thing helped me to sleep but it doesnt work in my case.
 
ask how what he is suggesting is different and preferably any evidence that suggests that it works for other sufferers
That is a good idea :) . I will try that with him when/if I start talking to him again (he's upset me about something else ME/CFS wise so I arent currently talking to him, Im thinking about breaking off our relationship). Issue is he's seeing the ME/CFS sleep issue as being no different to a healthy person who is unable to sleep and not distinguishing we may have certain types of sleep issues which are different... but yeah.. what you said I will give a go.
 
jenbooks;bt4924 said:
Men like to fix things. They aren't wired to simply listen and be supportive.
lol thanks jen for making me laugh, I needed that. (sorry to any guys here) That well may be the case.
 
warriorseekspeace;bt4935 said:
I certainly do better when I do get the 12 hrs (sometimes more) that my body needs, and worse when I don't. In fact, it's like a cycle, if I start getting "deprived" of the needed amount, my nervous system seems to get really out of whack, and then I start experiencing the old sleepless ness, as the first sign of severe PEM.
Warrior
Yeah.. Im like that too. I was just explaining about "tired and wired" to someone when I get overtired, which then makes it even harder to sleep.

Sorry to hear about your breakup... my current relationship is starting to run into some serious trouble due to the ME/CFS and his lack of ability to understand (right now I havent been on speaking terms with my boyfriend for past couple of days as he did another thing which really emotionally hurt.. yelled at me for something the ME/CFS caused :tear: , so Im wondering if I should break up). :sad:

I'll do another blog post about it
 
sandgroper;bt4939 said:
it is a universal problem.....an old boyfriend still sends me new information even though I told him I did not want contact with him as its too exhausting talking to someone who is clueless - he was always into me having my amalgam fillings removed - never every learnt anything about my illness and after years of talking I realised he had not heard a word I had said - the last info was some new wonder supplement - the latest thing that will cure long list of ailments - now I am able to read and not get angry - just told him I was researching euthanasia (coz i was having a bad day) - no response to that one LOL!
ohh lol, Ive researched that one too. I do hope you are in better days again now.

Thanks for the post.. the posts here (bens too) .. all have helped me feel a bit better over it. Nice to have some people to listen when no one else can understand at all.

Thanks everyone.
 
i applaud you for even having relationships with CFS! i cannot even manage to sustain a friendship let alone romantic relationship!!
 
Daffodil.. my relationships involve a lot of laying in bed with the one Im with just laying there too. I dont like have like a "normal" persons relationship with this illness (dont get to go out much with my partner.. only go out for necessary things). It tooks one trying to meet your health level to be able to have a relationship with this illness.

I was on melatonin (took 13 years to convince my specialist to give it to me!!! Its been shocking trying to get my ME/CFS symptoms treated by my doctors). The melatonin thou has stopped working.

Doctors wont give me sleep meds.. they basically wont do nothing as far as the ME/CFS goes. (I cant get treatment for my POTS either).
 
I "think" Ive had a breakthrou with some of the sleep stuff with him. :)

The other day, for once I was sleepy tired at a decent hour to go to bed and did manage to go to sleep then. My boyfriend on hearing I was actually feeling like I could sleep.. got all excited thinking I would (shows he still hadnt understood it at that point) as I had a specialist appointment with orthopedic early the next morning.

The norm happened thou and thou nicely tired.. I still couldnt sleep and layed in bed awake till 4.30am. He gets here at 8.00 and goes "its great you had a good sleep" to which I just looked at him and said "so you think so" and told him what happened and that i didnt sleep till 4.30am thou I'd gone to bed just before midnight tired.
Anyway he was shocked... this time it actually sunk in that thou im tired i didnt sleep. FINALLY ..

Then he goes something along the lines of why didnt you tell me that.

Doh!! I'd been telling him that for 4 mths, he just wasnt comprehending that someone who is tired still cant sleep. So he then goes "I only thought you couldnt sleep occassionally.. I thought you were sleeping okay the rest of the time". **sighs** It appears cause I didnt complain about it DAILY and just told him sometimes about my issue .. he didnt understand. (I dont want to be complaining about my issues daily!!! I dont want to be constantly winging about things.. he says I do that now and here with this he tells me I didnt tell him enough).

If I complain thou about my symptoms daily as he says I should of done.. well then he gets sick of hearing it and switches off.. Im darned if I do and darned if I dont.
(He is yet to understand tired and wired.. but I wasnt wired when this occurred this time when that occurred).

It leaves a big question now.. do i winge and tell him everytime I have a symptom so he understands how unwell I are cause otherwise I think Im going to get "but you didnt tell me.. you only said it occassionally".

Relationships are hard hard work.
 

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