have you ever answered a post then deleted your message ...

theresa4

I have been trying to answer others posts this morning but my replies are so one sided andd miserable Ive deleted them before posting. this leads me to think im not in a good place yet again.

My eldest daughter whos 23 is driving me mad I just want to tell her to **** . According to her my pain is because I dont do anything, my stiffness is becauses I sit too long, my exhaustion is because I should do more ....basically my RA symptoms are a direct result of my behaviour :shock:
If only it were that easy Id be cured!! Im tempted to say alot of things to her but know its out of spite so am biting my tongue.

My hubby is being really stroppy with me all the time too, hes in pain from his knee injury but this is something thats been going on before the injury hes just got worse, and if he tells me Im lazy again I will swing fo him. You see he is coping with his pain and working so why cant I?
Let me see he has pain in his knee joint that comes and goes and is nagging a bit. I have pain in all my joints including each finger and toe. They go stiff and painful they throb all night long they swell get hot and are pretty relentless in their torture of me. The more I do the more pain will follow later and the less I can do the next day so I have to pace myself to do the little I do. (and sometimes that doesnt help. ) I have given him the spoons theory in fact to all my family but was told its too long for them all to read they cant be bothered and my hubby hasnt the time. Ive shortened it to an example to explain to them and still they dont get it. Simple fact is the longer this goes on the more I am on my own. Ive stopped saying anything to any of them and if Im teary eyed or in obvious pain I occasionally get asked whats up with you?! Its like theyve never been told its not that they are interested just that Im making them feel uncomfortable. My usual answer to nayone asking is Im fine/nothing.. whats the point Im just boring.

Sorry rant over I just needed to let off some steam

Theresa x

elnafinn

Dear Theresa

I am so sorry that things are not good with you. Yes, I have deleted posts I have started but not for any particular reason.

Perhaps your daughter and hubby ought to accompany you to your appointments - that may help them to understand a little of what you are going through.

You sound as though you really need to do a lot of talking and if your family will not listen then you have us here or you can call the helplines. You never know what suggestions they may come up with. It is soemtimes easier to talk on the phone, than typing it all out and waiting for replies.

I do hope that things get sorted for you - you cannot carry on like this as it will do you no good at all or your hubby and daughter.

I wish I could be more helpful,

Love
Elna x

dreamdaisy

You are very low again, aren't you? Have you spoken to your GP about all of this? Any form of arthritis is mentally draining, emotionally draining and, obviously, physically draining. One of its major problems is trying to adjust to the fact that (for some of us) the meds don't take it all away and we are left to cope with the stuff that is left behind - and some have more 'stuff' than others.

It is very easy to become a one-track record with family and friends as the poorer days often outnumber the better ones by some considerable margin, so that is why here is such a valuable place. We DO know what it is like, we DO understand the impact this rubbish has on families, relationships and friendships but, more importantly perhaps, on US. We are the ones living with the full impact of arthritis and it has quite an impact!

I don't know what to suggest. As you know I am on anti-depressants to tide me over a difficult phase in my arthritic journey through life and they have helped. Could they be an option for you? DD

theresa4

Thanks Elna and DD

Ive been on anti D's before but they dont really help I am reacting to my situation rather than any imbalance i think thats why they dont help. My Daughter much as she hates to admit is just like her dad. They are both extremely selfish when they have something wrong the whole world should sit up and take notice and noone has felt pain like them!! they just cope with theirs better than anyone else.
to be honest I think I need an out but Im scared to go it alone I need physical support and |I suppose mental support but Im not going to get that at home anywaybut they have to provide physical support when I need help dressing etc.. or helping me up when I fall. They cant just ignore that.

Im quite proud and wouldnt want a stranger helping me. Im so angry though my life was supposed to be amazing at 40 my youngest is now 16 so I could now do stuff (not that she doesnt need me but her needs have lessened and changed).
The truth is if not for RA I would have walked away from people treating me like this but then if not for RA people might not be treating me so bad. I would not be a burden and our relationships would be different.

Im not lazy I never have been, if anything Im quite the opposite, well before RA. To do nothing is so frustrating and boring and to rely on others is so against the grain. I was the person helping, caring ... I dont like it this way at all then they call me lazy and it hurts so much and I know thats me being silly but it hurts.
I made lasagne the other day i used to love making it (and I make a mean lasagne) but even dicing a couple of onions and grating cheese is a mammoth task . I was so proud of my achievement as I often cant do it especially not on my own (I still burnt my hand but it was worth it for me to complete something). Noone seemed to care that I had made it or say it was nice or anything. Am I expecting too much, I suppose I am its not a major achievemnt in the grand scheme of things just wish someone would recognise just how hard it is for me to do now. I cant eat it due to my food allergies but it smelled really nice.

thanks for listening

Theresa

hileena111

Awww Teresa,
I'm so sorry that you are so down.
I dont know what to suggest......I'm sorry. I just want to send you some comforting hugs ((((((())))))) and please remember we are hear to listen
Love
Hileena

jillyb1

Wow , you really are going through it at the moment and badly need support from your family . I agree with previous suggestions to maybe take them with you to your appointments so they can see the real you . If none of that is possible then please , please make use of us on the forum as we really do understand and emphasise ; I too am a RAer and know how the constant pain and weariness can take it's toll on you . Thinking of you ,Theresa . Jillyb

elnafinn

Dear Theresa

You are very angry and I perfectly understand why you are angry and so do others on this forum. I feel that you need to talk and talk and get this anger out. Talking, atm, will more than likely help you more than anti depressants. It's not doing you any good at all feeling this way about yourself and your family. As to whom you should talk to, it is only you that can deside that.

I wish I could do and say more to help you.

Love
Elna x

diamond

Sending you lots of hugs.hope you feel better soon .xxx

kathbee

Theresa, I am so very sorry to read your post.

I dont blame you for feeling angry, upset, and very hurt.

Families eh?
Hope things improve for you soon.

If they could have your body for a week or even a day
they would change their attitude.
Thinking of you and sending gentle hugs which you need
and remember, you are not alone.

Love Kath x

theresa4

OMG I have just had yet another row with my OH over how uselss he perceives me as he cant do the work I used to do and I am struggling to explain it to him as my mind is all over with painkillers and it is accounts. He doesnt listen and just yells at me.
What is the point any more

kellerman

Theresa,I had a post on here about almost the same thing.
Luckily my OH is not too bad but my eldest daughter can be just plain nasty.
I was advised to sit her down and talk to her.Well good idea but unfortunately didn't work.
She gets Renauds disease (spelling probably wrong)every winter,finger ends go blue and it is painful but is ok once she is in the house.
I started by mentioning this to her and asked her if the pain was bad.
Her answer "Oh don't tell me you've got this now" I was speechless.
Not a good start.
I'm also told I don't go out enough. Admittidly some days I have that much pain and have to force myself to take my dog out twice a day but I do it.Hanging clothes out is an effort but I do it.
I have trouble using the hoover so if my OH does it should I feel guilty?
Alright there are things I would rather do myself but if I can't does that make me lazy? I think not.I do what I can do when I can do.
Yes,sometimes my OH must get fed up,I can usually tell but he tries not to show it.I have 3 daughters and the youngest does understand so with this I am lucky.
I would speak to your GP as there are support groups for loads of problems.Come on this forum,give them info to read and like has been said take one or both of them to an appointment with you.
Sorry I can't be more helpful but remember we are here.
Take care and keep posting.
Hugs May

kellerman

Oh Theresa,
I was posting only using the one finger I can use today and read your later post.You are right they are selfish.
We spoiled them when we were ok.If as you say they can't be bothered to read any info they will never understand.
I have 5 children,worked full time shifts and my family always came home to a hot meal with the use of a slow cooker.SPOILED.
All my children are married and no longer at home.
My windows need cleaning,kitchen floor could do with a mop as its been raining here but this is a no from me at the moment,I'll see how I feel later.This annoys me but housework will still be here when I'm not.
Please please speak to some-one.
Do you an understanding friend?
The whole situation you are in needs sorting ASAP.
Love May

skezier

Hi Theresa,

First a (((((( )))))) and a shoulder as well.

Ben there and well its not easy to try and explain. I used to take it in silence and then one day just flew into a real rant and well that worked for a few days but unfortunately its not always easy to get someone to get their head out the sand.

I really think you need the help as you say in the emotional sense. I wonder if counselling would help. I know you d=said you couldn't talk to a stranger but counselors are very good at sitting and waiting for you to say something.

I had it on and off for 10 years ( I am a bit messed up) and it really did help so might be a way for you to be able to say how your feeling and get a bit of help to see a way to deal with it if that makes sense?

Counselling is very personal and they way I went maybe a different route to how you go but they are so good at letting you be you and say how your feeling and get it all out.

It might be worth thinking about flower cus it can really help you. Another 9(((( ))))) and a hope. Cris xx

frogmorton

Oh theresa

you poor poor thing.

Yep whoever said it we have spoiled 'em!! We have and l need to stop now before mine grow up any more being spoiled :shock:

I am so sorry, but l dont see how m uch lower you need to go before they see how bad things are for you.

We are here for you at any rate.....don't forget we are and maybe you shoudl look at being a bit more selfish yourself? Is there anywhere you could go or anyone you could visit...freinds l mean so they see you are actually a human being with needs and rights.

If you haven't considered counselling l would. l too have had it in the past just like Cris and actually it was worth it - from one fo those who really dosen't beleive in that sort of thing.

Hugs for you

toni xxx

theresa4

Hiya
Thanks for your replies
My hubby has been to appointments and know exactly how bad it all is and tells other people how he has to look after his sick wife ....
My eldest is just selfish and think the world revolves around her. She honestly wasn't brought up that way my other 3 aren't like her.
I would happily walk out the door if it wasn't for my youngest 2 who are doing a levels not that they are beyond reproach. And my dog cos I have no where to take him.
As for counselling it's like gold dust where I live and because mid sessions I had a steroid and could cope with everything like magic she signed me off saying there was nothing she could do as my mood was fine and coping was fine with steroid treatment.
All in all I've been left on my own (except you guys) to deal with it My gp is lovely but I always worry I'm overburdening him with cr*p that's not his problem.
Thanks again it helps to get it out I sent my hubby an email before I came to bed telling him how his words hurt and to imagine his 1 joint pain in all his joints all the time. Then add pain dullers that stopped you thinking properly 3 solid weeks of no sleep unless drug induced coma and see how effective he is and feels.
He will probably delete without reading. Nothing new there.
Thanks to all who have read my post I am ok just upset that the people around me one wwhom I have spent 26 years with have not one ounce of compassion for me.

Theresa z x x

elnafinn

Dear Theresa

I hate hearing that you are feeling like you do. Isn't there anyone in your family that you can turn to so you can offload? I don't know if you have phoned the helplines ever before but I would suggest you do that, but they are probably not in the office over the weekend and you do really need to speak to someone sooner than next week. I do feel for you and I feel so inadequate that I cannot help you.

Elna x

barbara12

Oh theresa
Has though life is not hard enough, I think a lot of us on here really do understand how you are feeling,none of us can help with words, but just to let you know we are here for you to get it all out, and its good to know that you are talking to people that understand.
Sending you loads of hugs (((((()))) and please keep talking.

tjt6768

what a horrible position to be in. I think they should be bloody ashamed of themselves...
It just beggars belief.... Sorry but I think it's cruel.

I can just wish you luck mi dear..

I want to slap em..

suzygirl

Teresa what a horrible situation to be in. Your home should be a place of sanctuary and refuge for you.

Is there anywhere you can go for an hour for a mood boost? Local library, garden centre? I go to both and have got familair with the staff and have a little natter. It breaks the day up if I am feeling rough. The garden centre has a section of funny cards that make me howl. They are both small and local so not too demanding.

I hear you on the cooking, chopping and grating, ouch!! :shock: It is a sense of achievement if you manage it.

Keep posting to let us know how you are doing. (((hugs)))

lindalegs

Hi Theresa I'm so sorry your O/H and daughter are treating you like this and there's little I can say to help :sad:

Why don't you phone the Helpline at the top of the page and maybe talking over things with them might help you.

0808 800 4050 is the number - I think they will understand very well what you're going through.

Don't lose touch with us either we're hear to listen too.

tkachev

I do know how you feel. i still get angry and upset about the years back when I was up/down stairs and chairs, would long to sit still despite the stiffness, the fatigue and insomnia, the crying while washing up and nobody taking over from me. We deserve a medal that's for sure. We are the strongest, least lazy people going,but get no thanks and understanding.

The only thing that has helped me has been the treatment. I got better so I coped better but in the long run that is not the best answer.

If your kids are doing A levels, they need a quiet home without extra stress. But they are old enough to do some housework/cooking.I could suggest a rota but I'm sounding like Supernanny! Phone the helpline and come on here to offload If you are able.
hugs ((((( )))))
Elizabeth

valval

sorry that your family are such a selfish bunch of loosers. but your daughter is old enough to leave home, tell her if she not happy to look after her self then she will have to leave and save you the extra work she is causing you can not do all you used to it imposible my lot used to dishes in the sink till i feel like doing it they look after there own rooms if clothes not in wash basket then do not get washed they then take them back up i can no longer carry clothes up stairs so do not try i only hoover once a week at most it good exercise but depends what else needs doing feeding shopping and clean clothes top prioritys rest as and when i can be kind to your self they proabully think if they get at you enough you will do it all for them you can not so let them grow up and help you it your home do not leave it but learn to say no and not feel guilty val

cebeem

Aw Theresa
I can relate to lots of this..big (((((((()))))))))))) from me.
My daughter is now 26 and after years of trying to muddle through with things myself, expecting them to help me....she suddenly became my best friend and the support I always looked for.
But she has said that I hadn't explained things to her in terms of telling her how it really was and asking for her help instead of trying to do it myself.
I suspect she (my daughter) really wasn't mature enough to take such things on board and was still expecting to be cared for herself.
Bit by bit the truth was delivered to her and demands had to be made of her..... now I'm glad I did it that way, probably just how you have been doing things.
Don't let this horrid disease separate the 2 of you...I hope that. given a little more time she will begin to understand.

Please take up the advise given and contact the help line.. much love and support to you ..C*

skezier

Hi Theresa,

You know thew gp's councillors are not always the best.... I saw a private one bless her and she helped me so much. I know that sounds smug but I just wish so much you had someone you could sit down and pour it all out to.

Leaving you a ((((( ))))) and a hope for the morning that it will be a better day. Cris xx

theresa4

Thank you all for taking time to reply.
I have 4 kids my eldest is not supposed to be at home as she has her own Place but her bed broke so is waiting for her dad to fix it to go back there. She has a 1 yr old which adds to the mess here although my daughter is the messier one not my grandchild. She sits all day watching films whilst she's here leaving Dishes behind her.
I don't dO the vac anymore as I can't simPle as I can't push it around as the pain is too much. I do my clothes washing but I need someone to carry it up and downstairs as I struggle to get me uP and down although down can be very quick just painful :shock:
I do wash up but can't scrub hard marks and drop things on and off. Few less pots to do.
I need help getting dressed and undressed.
The meds are not working and I suppose things are worse as I'm 3 weeks out of a depo steroid so after being able to function as a normal person for 6 weeks and do everything I am now raPidly declining back to little function.
As time goes on I realise that my home support network is declining and I have to come to terms with it but my oh carries on if house is a mess and he can't do it as he's working over 10 hrs a day to try keep our business afloat. So he screams and shouts about mess.
Because of business we now have 1 car which my hubby has so my independence is gone. I do get buses but I can't on my own as I fall.
It's a whole mess and apparently all my fault ( I was good at running the business one time ) the mess the business his tiredness.
I will get through it I always do and pick up everyone else on the way as usual just right now I'm struggling to find the strength and so glad I can let it all out somewhere.
Thank you all for your kind wishes and hugs
Theresa x

barbara12

Hi Theresa
Like you say we do get there in the end,you carry on talking to us lot, its so good to be able to help...if only a little...
More hugs coming your way ((((()))) xx