find it very difficult to cope

mariam

i am in so much pain allthe time i dont know what to say anymore
friends and family do not understand they just put it to a phase
i am taking pain killers trying to juggle family lfe husband is in a mood he just cant believe i can be in so much pain. i am on my own trying to cope i just dont know what to do .i read the forum and can relate to everyone when they are in pain my heart goes out to them. i dont think i can carry on no friends no family to support they say to me you should look at the unfortunate people.
i have osteoarthritus in the hip and spine and its the worst pain which you live with day and night. i just give up i dont know what to do.

dreamdaisy

Oh mariam, I am so sorry. Living with constant pain is far from easy and those who don't do find it hard to understand. What sort of pain relief are you taking - is it sufficient? Nothing removes all of the pain, even the strongest dullers only remove more of an edge, but it could be that what you have is not being effective enough for you. Perhaps a chat with your GP is in order? I think he should certainly know how low you are feeling. Talk to us, we know what it is like. Take care. DD

skezier

hi Mariam,

oh flower you sound like you are having a very bad time one way and another. back and hip pain are very deliberating and its very hard to rest them at all or get the weight off the joints enough to stop the pain.

i don't know it they have put you on a hip replacement list or who you have seen but it does seem that you are not on either enough of a dose or strong enough pain relief. so if you have a consultant i would try and get to see them or else go to your gp for better or stronger relief.

Mariam this bone stuff messes with heads as well as bones. you can end up feeling so isolated and alone and depressed. i wish things were easier for you and it will get easier but flower maybe talking to your gp will help you to feel happier as well as better pain control.

your family are not playing fair and maybe a few leaflets on arthritis might help you to get the message across? phoning the helplines here could also help you as well. hang in there and i so hope tomorrow will be an easier and better day for you. Cris x

lindalegs

Hi Mariam,

It sounds to me as though your pain meds need looking at. I don't call my medication paindullers as they do kill my pain and are very effective. You really need to talk to your GP or Rheumy consultant/team (if you have one) and try to get on top of things. At the moment the pain is controlling you life and it doesn't have to be like that.

I think also, as Cris suggests, that talking to the Helpline (number at the top of this page) could help you because they're all volunteers and have arthritis themselves, therefore they'll understand what you're going through.

Let us know how you go on.

Luv,

valval

first off you are not on your own we are here for you but you need to see your gp and tell them what you have told us your meds not helping your quality of life is affected and you need help before you end up depressed as well (((()))) val

frogmorton

Yes Miriam

you aren't alone at all - you ahve all of us and we do 'get it'.

The family and friends need educating so they can see how it really is for you. There are leaflets on this site which might help

http://www.arthritiscare.org.uk/PublicationsandResources/Listedbytype/Booklets/main_content/EmotionsbookletAug10.pdf

Don't know if this works - not very technical me! You can also ring the helplines: 0808 800 4050
and agree with Legs too....maybe your pain releif isn't cutting it for you??

Love and HUGS

Toni xx

mariam

hi everyone thankyou for replying its so nice of you alll and for the first time someones understand and can relate what this pain is about
i have been strugling for 2 years now no one to talk to .the medication i am taking are declofenac amtriptine 50mg tamadol solpal and the calcium tablets i have been refered for hip replacement only consultant is reluctant due to my age i am only 38 i go swimming try to do my daily exercise try to be positive but its so hard when small things like combing your hair is a major task it really upsets me .i have 4 children to coppe with they too get upset seeing me in so much pain i try my best not to show but that is difficult when you phsically are very stiff and in tears because the pain is so strong. i miss my lifestyle i was a working active woman and all of a sudden have come to a halt .you know i useto think when all my children are in school i will get back to work and do what i want to. i was a verey independant women i dont want to depend on anyone i want to beat this illness but seem to be failing i just dont have the support anyway thank you for understanding me. i really appreciate it
from the bottom of my heart .you know what really is hurting me that my husband has given up on me he says things like i dont believe that this pain is a daily thing and that i cant help you ,and if this happened to him i would go to the ends of this world to make him comfortable and support him that does not cost anything because i love him so much married for 21 years but he has given up on me because i cannot perform the duty as a wife . its not my fault

GraceB

Mariam,

Sorry to hear you're so uncomfortable. Is there any way your husband could go with you to a GP appt and listen to what you say to the GP? He might then realise how much pain you're in.

Pain is such a difficult thing to deal with - I get people saying to me "you look well" - but they have no idea what constant pain does to you. It drags you down and is constantly there.

I've currently got inflammation deep in my right hip (OA in all other weight bearing joints) and am on 8x50mg Tramadol and 8x500mg Paracetamol a day and it's getting past that lot! I'm practically head banging with the pain but am struggling into work as keeping mentally busy takes my mind off things.

I find hot and cold alternately is soothing; how about trying a hot bath or shower? If the children are old enough to help can you ask them to do little "chores" for you? If you haven't already got a walking stick I'd invest in one - you can get some lovely ones now - and hold it your hand on the other side (right hip, stick in left hand and vice-versa). Sit down to do what you can and break jobs into manageable chunks.

Rest when you can (easier said than done I know when you've got kids) but try if you can.

Keep posting on this forum, ring the help-line and see your GP. When posting on here pour your feelings out - it does help believe me. I've not been a forum member for that long but the support I've had from here has made all the difference.

Sorry I can't physically help you in any way but I'm sending you positive thoughts and vibes.

Take care of yourself,
Grace.

dreamdaisy

Men like to fix things, mariam. They like to know that if C is wrong and they do A and B it will lead to C being mended. We can't be mended and this can cause those around us a great deal of frustration as they feel helpless and, as my husband once put it, ' it renders me ineffectual and useless'. Of course it doesn't, but I could understand what he meant.

I think your husband could be struggling too with witnessing what is going on with you. It is sometimes not easy to talk to one's spouse about this stuff, I made a deliberate effort not to talk to Mr DD too much about it all as I thought he had enough to cope with work-wise let alone adding in washed-up-wife wise too, and then I discovered over Easter that he was in fact feeling excluded from my life. I don't talk too much about it now, either, but more than I used and I ask for a little more help from time to time, eg with lifting heavy pans off the stove etc. We walk along a number of tightropes when dealing with arthritis, and at times the marital tightrope is one of the highest and narrowest. Take care. DD

mariam

thanks for the advice you are right . i think its just so painful that i am exhausted .i have stopped telling people how i am when ever they ask me i just say i am ok
what i am shocked at i did not know arthritus can be this painful i feel for all those people who are going through this day and night everyday
its really exhausting and i really praise those people who are caring for there loved ones they are doing an amazing job helping someone at there time of need the carers cant take the pain away but just comforting them reassuring supporting them and helping them they will really appreciate it .

dreamdaisy

I reckon no-body knows what anything is like until they have it. Some are very caring and empathetic despite being healthy but many aren't. I've been in constant and increasing pain for fifteen years, I am kinda used to it, I dread it stopping as I can deal with it and it's no big deal. I do what I can when I can, and if I can't whatever job it was will still be there tomorrow. It takes time to learn to cope and manage, time to learn how to ask for help and when, time to accept that life is nothing how you thought it was going to be - one thing that arthritis does give us is plenty of time. DD

hileena111

Hi
I'm sorry you are in so much pain. You have us to talk to....we all understand no matter what kind of arthritis we have pain is pain is pain.
Dont think I can say anymore then everyone else.
Try and take your husband to some appts. Mine comes with me to all consultant appts .....mostly because I'll come out ane then say....what did he say about such and such a thing??? So he is my memory in that respect
I have OA in both hips....well one has had a replacement but the mobility is worse than before. Oa in my spine and my ankle and neck. I've had oA for 9 years. and am still learning how to do things or not do things as the case may be and pace myself.
Like I say I dont think I can say anything different but just remember we are all here for you when you want/need to talk
Love
Hileena

kellerman

Oh Hun,
I'm so sorry your in so much pain...My OH is now my main cook and dishwasher...but this is just a new thing for him and now I'm almost banned from my own kitchen.
I consider myself lucky...but I don't know how long this will last.
On the flip side my eldest daughter...who came to see the ortho with me...will never understand.Men are funny creatures (sorry to the ones that post ) We don't really discuss my pain...he knows its there,he knows it always will be but I don't moan at him....I come on here.
Everyone here understands and you don't feel so alone and lost.
So please don't think nobody understands....like I said we do.
I know you'd prefer it if your husband showed some concern,maybe he can't,maybe he just doesn't know what to say...so he's ignoring it in the hope it will go away if he does.
Please keep posting...it will help.I would very probably be in a dark hole if it wasn't for the fantastic folk on here. May

lindalegs

The trouble is Mariam your husband can't feel your pain and sees you struggling and just can't understand. He also feels okay and is fit, healthy, painfree and able to do all the things he ever wanted to do. Your life has been turned upside down and because of this his has too and it's so difficult for both of you especially as you're young at 38 to have to endure this. Sympathy only lasts a short time and when an illness drags on and on this goes out the window and if we're lucky empathy takes it's place.

I've had RA since I was 27 and I'm 53 now and am thankful to be in the same marriage with our two lovely sons. I'm not saying this to show off but to let you know that you will come through this, it is temporary and once you get on top of your pain it will be easier again. Life, for us, is not as we once planned but is just different. We have tough times but wonderful times too and you and your hubby will also.

Talk to your GP and enlist their help, while ever you're not seeing them they think you're okay but you're not are you? Please don't keep suffering when there's help there for you.

Keep us all posted.

Luv,

LolaCrayola

I have OA in my spine. I take nerve blockers at night, I also always take paracetamol and Movelat Gel. I have other tablets for bad days. I am waiting on the pain clinic and I have nhs physio. Just ask the doctor for what you want. Say 'I want...' At least we have, an idea of the pain. My pain is 24/7 but not like it was, it was unbearable for a long, long time. Go back to your doctor.

bubbadog

Hi Mariam, I read what you wrote and can understand how you feel with the pain and with the way family and loved ones react. Pain wise, I suffer badly in my back and hips with Osteo-porosis, I take pain meds but sometimes when it's bad need a top up of something to take the edge off, my GP is great and we have a great relationship and she suggested oromorph to me as a top up for the pain and only when things get so bad the normal meds don't help, and as long as I stop when things ease. And I have to have a weekly phone consultation to keep an eye on how things are and if the pain doesn't ease to re-evaluate pain meds. As my family and loved ones, They don't understand how you feel because they don't feel the pain you feel, it's not like a bruise or cut, they can't see what's wrong so they don't understand. And your husband must hate not being able to take the pain away for you or not being able to understand how much pain your in as like I said he can't see it. I know I felt my husband didn't get it and was being horrible to me until we sat down and had it out, we talked I tried to explain about the pain and how it made me feel and he told me he hated feeling helpless and not able to take it away. Now we talk about how I'm feeling so he understands and he helps me as much as he can. He's a great cook now! And Mariam, you have people here who totally understand and we are here if you need to talk. bubbadog/Amanda.

mariam

hi thank you for your reply i am so alone i dont know what to do i cant cope with family demands 4 teenagers from the age 11 to 17 trying to keeep up with them feel so guilty when i cant do something for them
and my husband reaction is nothing i have explained everything i need alot of help and support but his reaction is i still should make an effort how can i when my body is not in my control i am like on a time machine wher i have to wait for my pain to ease of or the morning stiffness to wear off or really bad nights but regardless i still carry on trying my best to make everything normal but i am hurting so much from the bottom of my heart. i dont think my husband can deal with this and just wants to walk away and is just waiting for me to let him go make his decision easier.i believed marriage was for better and worse health and sickness only true love can survive this. i truly love him so much cannot imagine life without him i just dont know what to do

stickywicket

Mariam, I really feel for you. You have so much on your plate and cannot go soldiering on alone.

Others have suggested you take your husband to a GP appointment. It has helped other partners understand the real nature of this beast. How about your sons? Do they understand? Teenage boys can be blissfully unaware of things but can also be very helpful and careing when stuff is spelled out to them. (I know. I had two.)

I think you should consider giving the Helplines a ring. Talking to someone does help - even if they cannot take the physical pain away it helps to unload some of the emotional kind.

Be gentle with yourself.

mariam

my oldest son is 17 then i have a16 year old daughter a 12 year old daughter and a 11 year old son . my kids are coping and have accepted my limitation but they do feel it. but i am always worrying about them .

stickywicket

Worrying about one's children goes with the territory, Mariam. Mine are 40 & 37 and I still get nattered about them sometimes. Do yours help at all? Washing, ironing, cooking etc (Not every day!) are useful skills which they'll need to learn at some point. I can see you're very worried about how the arthritis is affecting your relationship with your husband. That's why I feel it would be good if you could talk to someone.

lindalegs

Oh Miriam,

I agree wholeheartedly with Sticky, please ring the helpline, they will understand all that you're going through.

It sounds as if your husband needs to talk to someone too to vent all his feelings.

I'm so sorry I don't know what to suggest to help you.

Luv and hugs ((((((((((( )))))))))))

skezier

Oh Miriam,

i am so sorry things are so horrible for you and like Legs and Sticky i think talking to the helplines would so help.

its hard for me to advice on what to do re your husband cus i got it wrong but we didn't talk enough so as well as the lack of underder standing there was also not enough information for him to try and understand. i think talking is so important and i wonder if your husband has his head in the sand so its not happening>?

maybe he could or would talk to the helplines here? i don't know as he would but ask him if he would cus it might really help him as well.

Miriam its got so many things combining to make you feel so down and so helpless and all i can think of is to get your husband to talk to the helplines cus they will be able to help him understand for sure. they also would be good to you as well. laving a ((( ))) and so many hopes. Cris x

valval

the trouble with life is we can not say for certain how life will turn out but we do know that in the end we all have to rely on our selves when push comes to shove.
you can not make him stay if he decides to go i hope it will not come to that and that he is just finding it hard to get his head around it all and will get there in the end.
you must only do what you can do not try things you know will make you worse and see if your meds can be revued good luck ((())) val

kellerman

Hello Marion,
Please keep talking to us.I know we cannot help re your husbands attitude but we do understand.
I am concerned for you....we understand your pain and we also understand what it is like when family don't.
I hope with all my heart that things are improving for you.
PM me if you want to chat any time.
I will always get back to you.
Remember there is always some one here. Love May

valval

how are you doing i hope you are feeling a little better have you been to docs to see if anything can be done to help you




a little treat for you

val

jules44

Hi

When my OA was diagnoised (which I hav in svral areas) my Husband kept telling me taht it was mind over matter!! when his brother heard im saying that to me he told him off lol
As more areas were being confirmed with oa he became very angry about it and was very moody with me which did not help me at all it made me feel worse and down,(by the way he has also been diagnosed with OA in his hip and been offered a hip replacement) so I decided to make an appointment with my GP for both of us (but seperate appointments), we both went in, my GP saw my husband first, we then swapped chairs and I sat there and told my GP exactly what my husband was doing, my GP turned to him and asked if this needed addressing my husband then realised what he was doing and admitted that he was treating me that way because he was angry that I had this disease at a young age and couldnt understand why I should be full of it (I was 44 when diagnosed and confirmed with oa last year). Since then he has been a lot more understanding and has been a lot better with me he no longer takes that anger out on me.

Some times - especially if you have found a good GP -you have to bring these problems to light when you visit them making sure that you take the other half in with you.

Good luck hun