helpless, hopeless and almost given up completely

Everyday living
1

I am sorry to be so down when everyone on here is dealing with lots and lots of issues and I know I am not alone etc etc but I feel alone.

I cannot say a right word in my own home, I am not a naturally half glass empty person, exact opposite normally but when was I last "normal? " Ok so I know hubby has health issues too but I can really not cope much longer with feeling he resents my health issues.

I do my best to get through the days, I NEED my rest at night but hubby is a night owl and won,t get off pc untill 2-3AM meaning I am taking extra drugs to try to stay calm and not lose it with him. I am always ready for my bed by 9 pm and often much earlier but if I rest earlier I then wake after an hour as whichever way I lay gets sore and I have to move…if I wake and the light is on or the pc is on I can,t get back to sleep and am feeling more and more like I have to get up and walk out.

2

Had to stop writing as OH came back in the room,

3

hi anon

you sound so depressed and in need of a deep breath and a calm think.

would it be possible to have seperate rooms for nights when he wants to stay awake and you want (need) to sleep?

this doesnt mean that your relationship is on the rocks but just that you need a positive step towards a solution.

are you able to discuss your needs with your partner?

offer him a chance to air his needs?

sorry that i cant come up with anything better but hopefully someone with more wisdom will be along soon.

take care and have a ((((hug)))) from me.

carole xxx

4

Hello hun. I take it you have MS, is that right hun?

Ok, maybe my own situation can help. I`ll try to offer some helpful advice.

I am the one with a chronic neurological condition in our house, although hubby does also have health problems…both rheumy and oesty arthritis. But he is the stronger of the two of us and is not classed as disabled like me. I dont have MS, but was wrongly diagnosed with it for years.

I do have a similalry knackering condition! There is no cure, no treatment…so we muddle along, the best we can. But recently we are fratching more than we used to…2 people with severe health issues…recipe for a bumpy life, eh?

I go to bed around 6pm evry night. By that time I am ready for my bed…not sleep, but a lie down to stretch out my body, as I am a full time wheelie user, with suprapubic catheter.

Hubby is my main carer, but I have 3 others, so he gets a bit of a break.

After ive gone to bed, hubby has his` time and can watch what he likes on tv, as I do with mine.

We do share a bedroom, but not a bed.

I can go to sleep whatever time i like and again, hubby does what he wants. I dont mind what time he gets to bed.

Is your hubby using his pc in your bedroom? It would better if he didnt, for obvious reasons, as you`ve said.

Would it be out of the question to have separate bedrooms?

luv Pollx

5

thinking on it some more -

why not move the computer into a spare room and also a sofa so he can rest.

electrical equipment in the bedroom interferes with our sleep patterns anyway.

6

Oh dear. You sound so down.

Does your hubby know how you feel? It sounds to me that you are walking on egg shells in your own home and you need to have a good chat about it to hubby.

I agree with all that has been said above by Carole and Poll. Would be best if the computer was in another room to the one you sleep in if that is what is happening.

Wish I could think of something else to help. Just remember we are here for you whenever you need us.

(((Hugs)))

Shazzie xx

7

Hi, I know exctly what you’re saying. My OH is getting on with his life, and communication is now very difficult. I am in a bad episode at the moment and am ready to go to bed by 9.00pm. My other half will watch what he wants on tv and although we have been together for a lot longer than my dx I think he is now finding it extremely hard. The “helpless, hopeless and almost ready to give up” is exactly what I feel like - I must admit I keep telling my OH to cut his losses and go and get on with his life elsewhere. I’ve get to stop doing this because eventually if I keep saying it he will! We’re past the talking stage and just scream hateful remarks at each other at the moment. I know I’ll have to confront thi issue soon. Try and sort something out before you get to that stage. This site is extremely helpful and supportive as everyone has to deal with all sorts of issues so please feel free to rant, unload, cry and generally get things off your chest. Unless you have MS I don’t think anyone can really understand what it does to you and your relationships. Linda x

8

I would set aside the big issues about communication and consideration and understanding and concentrate instead on practicalities - they are usually easier to deal with.

Of course you should have your night’s sleep, starting as early as you like. Of course he should be allowed to amuse himself with computers, or TV, or whatever, ending as late as he likes. And it would be nicer for you both to do these things without getting seriously on the nerves of the other one. What are the practical barriers that make this so hard to achieve? Can you focus together on those, and find some work-arounds? Anything that will get you talking together in problem-solving (rather than blame/criticism) mode is likely to help the mood all round.

Good luck. I hope that you have a better night tonight - being sleep-deprived is just he pits.

Alison

9

Thanks everyone,

situation is my hubby is a hoarder, over the years our house has got more and more cluttered and finally we could not use the lounge…we have only got the bedroom which is too small for single beds can only fit a small double and the kitchen has also got his workbench in it so I cannot use my airing cupboard as the bench blocks the door. I have tried sleeping on the kitchen floor but it is too hard, also too difficult to get down and worse to get up from.

We have to sit on the bed to eat as no place to have a table or chairs in kitchen.

He has stuff stacked to the ceiling his side of the bed so he climbs over me to go to the loo etc.

It,s years since I had a good night,s sleep and even when I take loads of extra meds I wake up all the time.

He is sitting right beside me with the pc so every time the screen changes I am aware of it even tho he uses headphones so I dont hear sound.

I have tried to talk to him till I am blue in the face, he promises EVERY SINGLE day he will change his late night early hours pc use and then doesn,t I am beginning to feel I actually hate him…that is probably unfair because he says he is depressed too and can,t stand me nagging which I know I do, then I wnd up shouting…I probably am a lot louder than I think because I have only got about 50% hearing.

I can,t keep the same hours he does … I have tried but it doesnt work for me I wake early and need to go to sleep early.

I think my MS is getting worse really fast now after some years of not being too bad.

I am afraid to say anything to my gp as he is going to get stingy with meds if he thinks I might take too many. I take diazepam nearly every day just to try not to flip…that is probably not a great idea on top of my other meds…lots of 1800mgs per day of Gabapentin, Tramadol, blood pressure pills statins pain patches I had a stroke a few years back which is why I am on statins and BP pills, not because I have high bp there are also Amitriptyline. aspirin, I forget all the others but too many for sure.

The last 2 months I have had a dead leg, except if it was dead it would not be hurting I guess I don,t know if it is MS and would like to try a steroid course to see if it helped but dare not ask gp.

I am sorry to go on and on…I suppose it has been getting to boiling point over a long time and when I could walk away it was easier, now I can,t and whenever we argue…99% of the time I can,t get away.

He probably hates me too as he says he has lost his working partner. I used to help him do everything and anything.

We have both been retired through ill health but honestly he only gets up occasionally when he has to visit his dad 92 or drive me to a hospital app.

I agree he is depressed but cant get it through to him that life would be so different if we could clear up all this STUFF. He says it is not stuff, they are things he needs.

Sorry again for such a long rant but thank you if you got this far.

10

The truth is that he needs help, which in turn would help you. Hoarding has recently become recognised as a mental health problem. Does anyone know of his problems? He is being very unfair on you as his problem has taken over the whole house and now your lives. Would be accept help? Hoarders can’t get going on their own and you can’t help.

11

Oh what a terrible situation you’re in, really stressful :frowning:

There are two things I want to comment on - the first is what you said about not wanting to bother your Dr or being cut off from meds for taking too many. If you’re having trouble with your leg, go and speak to your GP, don’t think you’re a bother or causing trouble. You’re not. You need to tell him about the situation you’re living with because you need to get your husband help because it is killing you. Eventually it will literally kill both of you because a hoarders house is a dangerous place for things falling over or if there is a fire.

The second is your partner’s hoarding and use of a computer in the bedroom when you’re trying to sleep and climbing over you when he eventualy goes to bed. I understand a little about hoarding and have had to deal with someone who was a hoarder so I know that they believe that everything they hoard has a purpose and that they cannot see that having to climb over things or losing the use of rooms because of their stuff demonstrates that they have a very real problem. It’s probably futile but can you convince him to let you have you a room of your own? Just one room in the house for you and your things. Let him keep his stuff everywhere else (though this needs to be dealt with eventually) but your room is how you want to keep it. I don’t know how your finances are but maybe rent some storage or buy a shed (or maybe get one from the newspaper or Gumtree) to store the stuff in “your” room and then be brutal about keeping his stuff out of it.

If you can’t convince him that you need your own room and space then you have to speak to someone to get him help - does his Dr know how you both live? Does anyone know?

In the very short term, get yourself good earplugs and a good eye cover thing like you get on long haul flights.

12

Thanks everyone for all support and ideas.

Firstly I will order earplugs and eye cover ! Right now.