Feeling alone

PollySid

Warning - a feeling sorry for myself post

I feel so alone sometimes.
I have a lovely caring husband that tries his best to understand, but I don't think he realises how low I feel sometimes coping with this broken body of mine. I don't like to keep going on about how I feel to him as I am worried he might get fed up with me.

I can't be very attractive to him nowadays, walking like I do, and not being able to run around and have fun on the beach/garden etc.
I am not one of the worst cases by any means, but I'm not as strong as some of you and find myself fighting back the tears at times.

Tonight for example we watched a film and then went to bed. I did try to get comfortable, but feet, shoulders, legs and back had other ideas.
OH was snoring in 5 minutes and I lay there close to tears desperatley wanting someone to talk to. So I have got up, had a milky drink and trawled the internet looking for something interesting to take my mind off things.

I used to be so active and could go through the home hoovering and cleaning in one day. Now half an hour ironing or hoovering one room and I have to sit down. Don't even mention changing the bed or cleaning the bath, my OH has done those for years.

I don't feel like myself anymore, I don't have an identity. I used to work, I have worked since leaving school, apart from when the kids were babies, then I did strawberry pulling etc (great for the back).

Now I am trying to claim ESA (had the medical 2 weeks ago) and am worrying that they will turn me down and I will feel that they think I am dishonest and telling lies. They don't know me - I am incapable of telling lies.

Sorry about the moan, I just needed to tell someone how I feel.

resusjan

Dear Pollysid,

Don't apologise for having a moan - thats what we are all here for. Its hard to talk to family at times and they don't always understand, I think its hard for them to see their loved ones struggling and in pain. NIght time is the worst, it just seems to drag on and on when you can't sleep and the rest of the world is.

I've started sleeping in a seperate room to my OH. I don't particularly like it but find I settle better if I'm not worrying about disturbing OH with my constant turning over. I've also put a tv in the room so I can put that on if I can't sleep.

As for the attractive part, its not just the outside part of you that your husband found attractive in the first place. Despite all the health problems, you're still the same person on the inside.

I hope you get some rest today after your disturbed night and come and moan on here anytime you want to.

Thinking of you,
Jan xx

hileena111

Hi Polly
Like Jan I've started sleeping in a seperate room......I am more relaxed knowing that i wont disturb OH and his snoring wont keep me awake. Pain keeping me awake is bad enough I mustn't sleep as soundly as i used to because his snoring didnt bother me before.
Any dont apologise for coming on and having a moan.....we all do it it from time to time.
Families aren't always the best people to talk to because although they are supportive they dont really understand.
Hope you feel better soon....if not come back on and talk.

Love
Hileena

stickywicket

First of all, no apology is needed, PollySid. You are feeling low and no wonder. This disease can rob us of our self-esteem and self-image and I think you hit the nail on the head when you say you feel it has robbed you of your identity. You were an active, hard-working person and now you feel you are no longer that same person. You are though. I bet you put every bit as much effort into the half hour’s ironing, hovering etc as you used to put into the full day’s worth. Measure the effort not the result and you will continue to have reason to be proud of yourself.

I’d guess that the rest of what you describe follows from your current low self-esteem. Whatever the result of your ESA claim, you have not told lies and it really doesn’t matter what they believe on that score as you can hold your head up high.

Your husband? You know, it’s difficult trying to strike the right balance. We don’t want to burden them with all our woes but equally we mustn’t shield them so much that we exclude them. You are assuming that you are no longer attractive to him. That’s a big assumption. My guess is you need to talk, not when you’re upset – and certainly not when he’s asleep :roll: – but just generally, not in a ‘poor little me’ way but just about how each of you sees your illness and how it’s changed your lives and how you’d like to move forward together.

I’m sorry, I have to go now but I’ll be back later. Take care

tillytop

Hello PollySid

Please don't ever feel the need to apologise - and I am pleased you have felt able to share how you are feeling.

Like many on here (and probably most at one time or another) I also struggle hugely with the loss of self esteem that comes with the limitations imposed by the arthritis and associated "stuff". From the replies you have had already, hopefully you will see that these feelings are not uncommon - which doesn't necessarily make it easier to cope with, but will hopefully help you to feel less alone with the way you feel.

I can't come up with any words of wisdom I'm afraid but I am thinking of you.

Tillyxxx

Puschinka

Dear Pollysid, you are not alone in feeling that way. Your words, the way you describe how you feel... they mirror my own feelings exactly and so many others' on this forum, in fact - no doubt anyone whose life has been changed so much by a dibilitating illness.
I don't recognise myself anymore, I used to be so very independent and active,never needed to ask anyone for help, in fact everybody used to ask me for help...friends and my kids ( babysitting duties etc, taxi service...) and still managed to work 10 hour shifts in a physically and mentally demanding job...go powerwalking several times a week, was more supple and flexible than I was in my teens.
Omg - reading that... was that really me? Yes. Now I feel like a mere shadow of my former self, very little energy and I HAVE to ask others for help ( which is sooo hard to do )... and you're right, it feels like your identity has gone.
I don't have any pearls of wisdom, but you really are not alone in feeling like you do.
That's why this is such a good place. Everyone understands.
Sending you warm greetings and hope you feel better soon.x

bubbadog

Hi pollysid, we all feel alone at some point on this Arther journey, and here on this site is where you will feel the same and not definately not lonely! You can always reach out and talk to anyone on here and you can write as you have here and someone will always chat with you.
I'm sure your OH loves you alot and doesn't know how you feel because you don't talk to him. My OH does everything in our house and acutually enjoys it! And we have a cleaner who comes in and cleans the house for us.
I sometimes have to sleep in our guest room if I'm having a flare or flu bug like at the moment .
Don't ever think your moaning, your here like us we all know how you feel.

julie47

Hi polysid

I am sorry that you feel so down and alone. You are not alone at feeling like this, we all have our off days and weeks. I felt the same way not too long ago. :?
I do talk to my husband often, it may go in one ear and out of the other (so now I have started askin questions after ) but at least he looks as though he is listening
I often hate my body too as at one time it was quite a nice little body but my husband has told me many a time that he still loves and likes me as i am.

I was even more aware of my body last week when 2 friends took me shopping and we were trying on clothes and they had to help me.


I am sure without a doubt that your husband loves you just as much today, if not more as he did when you first met

Take care and ....chin up....
Love Juliepf xxx

dibdab

Oh dear Pollysid,

Like the others said, this is a safe place to unload when we struggle, and most of us do. Please don't feel alone, you have got a support system here that understands what you're enduring and just how wearing it is.
Like you I struggle to sleep and the OH snores almost as soon as his head hits the pillow. And like you I get the middle of the night tears-mostly of self pity I suppose, but knowing that doesn't make it easier does it.

I'm sure that your OH loves you just as you are, as you would him if he had the same disease and struggles- sometimes we need to allow them to care for us even when we'd rather be independent. But love does make all the difference, and your shared years count for so much.

I do so hope that you get a better night tonight- maybe diving in to the pain dullers if you need to, or a lovely warm scented bath and a good book before bed-as my gp said recently- it's no use suffering when you have the medication there to make it more bearable, it isn't giving in to use your medication, it's there to improve your quality of life.

Take care.

Deb x

Numptydumpty

Hi Pollysid, I'm sorry I don't have the words to comfort you. I do however, (like most people on this forum) understand what you are feeling.
You are not alone, we are here to listen and help in any way we can.
Wishing you well.
All the best,
Numpty

skezier

Hi Polly,

Oh lower the night times are often the worst....

Never appoligise as here it is safe to unload and also here your never alone.

Leaving ((((( ))))) and a hope you got a better night. Cris x

desjumeaux

Dont apologise for feeling this way, my husband is the same. Very caring and worries so much. I think he feels he should be able to make things all-right, and have the answer to everything, but of course he can't so feels bad about it.

Mind he never vacuums or cleans the way I would like or when I would like and that is so frustrating to us all.

I send my good wishes to you, I am in the early stages of getting the tablets sorted, its frustrating not being able to do what I used to, I cant believe I am like this.

I went into Boots today and had a free make over and feel pretty good after it.

JuliaHod12

Hi Polly

Like everyone else has said...........absolutely no need to apologise for airing your feelings...........its best to get them out and offload ! :-)

I dont talk tomy OH about arthur...........he doesnt understand despite being with me when consultant said i need a TKR.........seems to think its all in my head.
I wont elaborate.......... :-(

I hope you are feeling a little better and have had some rest today

take care

Julia xx

marrianne

Polly just read you post and it really brought it home to me its difficult to put it into heartfelt words telling the personal stuff but you did it so well its for all of us at some time or another just trying to wear a nice pair of shoes ,do something enjoyable without thought sleepless nights terrible we have all been there feeling completely alone ...Dear Polly I hope you are feeling a little better today Marrianne

valval

hi was going to reply to this yesterday but had head from hell and could not string word together.
it is so hard to know how much to tell others and for them to hear. how do you show how much you care with out becoming over protective and stifling some one, it such a hard balance and people sometimes say things they do not mean it just comes out wrong and when in a lot of pain we can take things the wrong way. it a mine field and one that we get no training to cope with. some people like to bury there heads in the sand and try not to think of the bad things, it a matter of letting them come to terms with it in there own time others are just selfish through and through. i do hope you find the right balance that works for you and you feel less alone you have all us and boy do we understand good luck val

PollySid

Thank you so much for understanding all of you. I do feel better atm, but then it is daytime and I have had a reasonable sleep last night.
I hate the dark and would probably sleep with the light on if alone. Some nights I can go to bed at 8 o'clock and fall asleep practically straight away, but then I am up at silly o'clock in the morning.
That isn't too bad on a lovely light Summer morning, hearing the dawn chorus and watching the sun come up.

OH has been decorating the spare room and is fitting a carpet atm. I am looking forward to my bit - dressing it. That is all I am allowed to do , he sends me out if I try to help him. I did get the job of standing in the corner to hold the carpet whilst he got it laid straight - something about 13 stone holding it in place :shock: He has a lovely way with words does Mr K.

marrianne

Well done Polly and Mr K bet it looks smashing to ,I love dressing rooms or anything new .I take the amytripiline 10 mgs at night and have big tv in my room so I watch something boring and it helps me drift of but as Sticky said some where on the chit chat bit there is a thread for people who cannot sleep they can chat to each other Marrianne