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Date: 04.02.2010
From: Kat

Subject: Struggling emotionally...

Hello all, my name is Kat, I'm 34 and I've had RA for 9 years now. I'm on Enbrel and MTX with some paracetamol and ibuprofen thrown in for good measure. When I was first diagnosed I was hospitlised for two weeks as my arthritis started everywhere all at once and I was in a terrible state. I could hardly walk and I couldn't even start to make a fist. It took over three years and every drug concoction under the sun to get things under control, but finally everything settled down and I had a good four years of relatively ok functionality.

I used to be an archaeologist and would spend several months of the year excavating. I was also very active and would either cycle everywhere or walk. Even up to two years ago I used to do a lot of walking. Unfortunately I had to give up on the archaeology and now have a desk job in a completely unrelated field (Team co-ordinator in customer service). Equally the cycling went out the window and now I walk with a stick. Consequently I've put on quite a bit of weight eventhough I've altered my eating habits to try and compensate (generally, you can't be good all the time, but I don't snack on garbage between meals and I always cook fresh. You'll not find crisps or biscuits in my house, just a fridge full of fruit and veg). Over the last eighteen months or so my knees have become quite bad and I am in constant pain to varying degrees. I'm generally able to put up with quite a lot, but it is all starting to wear on me. My partner tells me I've become withdrawn.

I feel generally down and don't feel like doing much other than the essential things. I have to psych myself up for general things like cleaning and take lots of breaks. Things I wouldn't even think twice about even two years ago I am finding I have to think through in my head before doing, even getting up in the middle of the night.

My partner, Kelli, of three years (yes, I am an arthritic lesbian!) helps me in every way she can. However I sometimes (more often lately) feel more like a burden than a partner and I worry that I am distancing myself from her with my grouchy, pain ridden behaviour. In fact she has said as much. I try very hard to ignore the pain and difficulties I have and be as 'normal' as possible, but there are just some things I can't do any more or am frightened of doing because I know I'll end up in more pain. I'm not talking about skiing or jumping off the wardrobe, just normal things like wandering around town for the day or preparing a romantic evening. It all just seems too difficult. The downside of this behaviour is that I become very intorverted as I don't want to burden Kelli any more than I feel I have to. I can see the destructiveness of it but still I find myself doing it. I know communication is the key but it also means admitting what I perceive to be 'failings' on my part. I don't believe Kelli will run off with someone else as we are engaged to be married and she knew I had arthritis when we first met. It's just that I've gone down hill a fair bit since then and I'm angry with myself even though I know it is something beyond my control.

I would love to be physically spontaneous again as I was when we first met. However these days I am so often so worn out from putting up with pain all day and working full time that all I want to do is crawl in bed and fall asleep. That can't be any fun for Kelli and we often have words about it. Often times I think she is being unfair and my heart says, 'I wish you could feel for two hours what I feel like all the time and then maybe you'd understand!' But I know that is unrealistic and petty. It is a non starter. Sometimes I think I should say it, but I don't want to hurt her. It is very frustrating.

I've talked to my specialist about my knees and he referred me to a surgeon about knee replacement. Unfortunately the surgeon was of the opinion that I was too young and my knees were not structurally bad enough to warrant it. The concensus was that if I lost some weight the pain would decrease. I feel like I am a catch 22 situation. I don't eat badly (generally) but I find it hard to exercise because of pain. I do physio exercises to get my joints working a bit better but when it comes to 'fat burning' I end up in agony, even with hydro. I feel like I am stuck in a rut and I can't get myself out of it. Sometimes I feel like I should go to my GP and ask to be drugged up to the eyeballs to get rid of the pain...but then how would I know if I was causing further damage to my joints by doing too much? I am finding it very hard to become motivated and am petrified that I'll end up in a serious depression.

Have other people gone through the same thing as me? I'm sure everyone does. Is there any advise people can offer because I feel like I am struggling uphill at the moment and damaging my relationship. Thanks for listening to my out pourings. Comments would be appreciated.
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Date: 05.02.2010
From: Steven

Subject: Re: Struggling emotionally...

Hi kat im steven im 20 and suffer from osteoarthritis just read your story it sounds so familiar to mine on lots of it i starting feelin my pains at 12 and got told its growin pains but i knew it definately wasnt growin pains so i kept on going back for years and docs basically left me waiting and waiting till they eventually told me i have osteo in my left hip i get my good and bad days but when its bad its really sore i used to play football everyday for about 7years as i played for teams and tht i thought it was all the running about tht caused it but eventually found out it was osteo i dont eat lots of junk food or tht i always eat fruit and veg and have the occasional curry i weigh about 11 stone coz i was told too much weight would make my joints worse so i watch what i eat due to tht i have a desk job aswell 8 hours a day so i dont get much exercise anymore but i walk about when i can but i get sore when i walk about too much especially for hours my hip locks up and im like an old man... i know wat u mean about psyching yourself up to do things round the house im the and i struggle to move about the house aswell quite a bit unless i take my cocodamols and diclofenac but theyre only gona help for so long... my partner of nearly 4yrs help me a lot aswell but sometimes we argue about it which doesnt help coz i sometimes cant help with much things but feel lyk im being lazy and ppl tht dont have arthritis dont understand the strain we go thru just to do little things etc and i feel lyk im holding her back a lot lyk when she wants to go in town so we go and im fine for a bit then the pains start takin over and im limping about 3 miles behind her and feel lyk im holding her back but she understands more now about tht and i get very crabby with the pains which makes thing worse and i snap at the least little thing due to it i spoke to hospital about giving me a hip replacement as per usual they said im too young which fair enough i am only 20 im the one with the bad hip so it shud be upto me for my body just feel glad theyre other ppl lyk urself tht i can talk to about arthritis and know im not only one suffering with the pain..etc thanks for reading this:D hear from you soon
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Date: 05.02.2010
From: MOONFIARY

Subject: Re: Struggling emotionally...

Hi kat lovely to see you on this Forum, i have only been on here for a while, i have just read about you and what you are going through, congratulations on your marriage to be to your partner Kelli, I know what you are going through, i am 50 now and i was diagnosd with OA in my Facet joints last year L5 S1, I had two sets of injections in my spine which really worked for me, so my consultant suggested that i have an operation on my facet joints, which i had a week ago today, i am in bed recovering unable to do nothing for myself, the op went well, but i really did not anticipate the pain that i would be in after, unable to lay on my back, and could not before my op for over a year and a half. Still can't lay on it as i have clips each side of my spine from the surgery, i am constantly moving during the night and have to get my husband to help me turn over. I gave up my job last year, working for a company which really hit me so hard, i get days sometimes when i just cry, hard for me to deal with as i was very active, i am an Holistic Therapist and a Reiki Practioner and Equestrian Reiki Practioner but i have had to give all that up which hurt and still hurts me so much, i have been in bed for a week to day and it is killing me, i miss my house, but i am confined to my bedroom and the shower room at the moment, my family are and have been very supportive, but i feel so bloody useless and blame myself for being that way, i have RA in my knees, the list is endless Kat, as you will be aware yourself. Your partner and friend will support you throughout, i can only tell you that my husband says's that he hates it that he can't take my pain away. My understanding, love and support goe's out to you, and your partner Kelli, come on here anytime and tell us how you are take care MOONFAIRY xx xx
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Date: 05.02.2010
From: sally

Subject: Re: Struggling emotionally...

hi Kat,
I understand what you mean about the exercise. I used to be very active like you, swimming, gardening, walking every day. Put on a stone which I can't seem to get off. It is very demoralising not to be able to be spontaneous either, having to choose one thing over another. Google 'spoon theory' and have a read, maybe get your partner to read it, explains to people what it is like with arthritis.

Could you ask your specialist to refer you to someone for a second opintion re: the knee op? Also, have you talked to your gp to see if they can help? Being withdrawn is sometimes a symptom of depression and they may be able to help with that. Worth a discussion in any case if you haven't already had one.

Perhaps you could do things in a very small way to make your partner feel special - things that don't take energy - Light candles to put on the dinner table, buy flowers sometimes, etc. Cliched I know but works. Even a very simple effort will be noticed. I find the smaller things often have more meaning than the grand gestures - you don't have to cook an enormous meal to show someone you care!
xx
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Date: 05.02.2010
From: Verity

Subject: Re: Struggling emotionally...

Hi Kat, I understand everything youve written. Im 24 and have had RA for 18 yrs. I have it all over my body and even simple things Im either unable to do or causes me a lot of pain. My boyfriend, bless him, has been an absolute star but its soooooo difficult to keep a relationship positive when youre in so much pain. Sometimes I just don't want him anywhere near me in case he knocks me or squeezes me too hard. This is very hard for him to understand I think, that its not him, Im just in too much pain. I work full time and as you said, end up knackered by the end of the day/week. I stay in the house ALL the time. i like to have my things around me and be in a space I know how to cope with. Ultimately though, tom (bf) is a bit of a house mouse too (although hes very into mountain biking, he rides when Im working) so we play games in the house etc but someties I find it tough not being able to just get up and go get my own space.

Ive found that feeling guilty about not being able to do much only makes you feel worse. I have to think that this is the way it is and nothings gonna change that. So I can either worry constantly and be miserable or just try and ignore those feelings and try and be understanding when tom gets peed off (it does happen often).

If I were you, id definately go get some stronger painkillers. I know its only masking the problem (I refused to take any painkillers all my life until about 6 months ago) but god they can really make a difference. I just, again, had to accept that this pain prob was never gonna go away so had to make my life as painfree as poss NOW.

Keep talking to us as it really does help getting other peoples perspectives and just taking a load off your mind.

Take Care xx
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Date: 05.02.2010
From: jill

Subject: Re: Struggling emotionally...

Hi Kat Welcome to our brilliant forum....the gang that posted to u, spot on.....I felt quite emotional reading your post, that is exctly how I feel.....it was as tho I had written that about Me.....everyone in here totally understand your pain, emotionally too......not long ago I had felt bad(two weeks ago infact) told my fellla that he shouldnt have to put up with my miserable life, and that we live just once and that he should go and be happy......he said "im going no where, cos I love U".....he hates to see me in pain, and wld love to take it away, but becos he cant, he helps in other ways, like cooking, cleaning, hes amazing, for a fella LOLOL, but it makes me feel sad, Sex is a nitemare, causes pain, so I cant be bothered, id rather watch a good film and go to sleep... the things that have helped us Kat, is I take my fella to all my appointments(ive had 7 ops since 2003) so u can see how much care he has given me, spine op, two knee ops,2 shoulder ops, 2 hip operations, and now due a spineal fusion.......I have been very depressed about all this, and feel im a huge burden on him, he is now my carer and works part time......Kat im just wondering, can u afford to work just part time? I cant imgaine working full time, or even part time, no wonder u r knackered, bet u dont even want to eat when u get home? lots of us have had to work part time or give it all up in the end, Moonfairy had to, she had a great career, its about Adapting your life to suit your physical problems........kat also there are better painkillers out there, Im on MTX and Enbrel, but im on great painkillers too, ibubrofen and parcetamol wont help terrible pain.....I wld at least ask to have Tramodol....that will help u so much, I take Opiates for my pain, Zomorph, wow what a differnce it has made to me, I wld deffo go see your Biologics Nurse and ask what else u can have, as u are not coping.....also asking to go on an anti depressant is common, it helps with the anxiety we all feel, so dont feel ashamed, u are Not a failure......u have done the right thing coming on here and telling us all about U and Kelli, wld be great if mb kelli cld read some of the posts, so that she can understand more about the R.A. u have...also take her to all your appoinments, it makes it 'Real' for them.....we dont want Pity, we just want Empathy......she will help u, if she loves U, she will be there for u, as she is now...Congrats on yur forth coming wedding,let us know when u r getting married, dont know what else to say to u Kat, seems we r all in the same boat, and some cope better than others, aall I know is, once I gave up work, that was a huge relief.....take care, Lots love Jill x
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Date: 05.02.2010
From: Kat

Subject: Re: Struggling emotionally...

Thanks all for your comments. Just reading that there are other people out there going through the same thing, or often worse is a comfort and makes me realise that I am not alone and that I do actually have a good life and an understanding partner despite the RA. We had a talk last night and I got her to read my post. Her comment was, "Why didn't you just tell ME?!" I got called silly for keeping it all in, and she is glad there is an outlet for me on here when things get rough. This place feels like a little community.

Jill, I have tried a lot of other pain killers like DF118 and Tramadol and they do make a difference, but it is not terribly long lasting, made me feel tipsy (not so good for work) and I didn't like some of the side effects...dry mouth, constipation...I only go to my GP and get them if I simply can't stand it any longer. The pain does fluctuate so if it is only really bad for 3 or 4 days I can cope-ish.

I suppose I could afford to work part time. I have thought about it...swithcing to working 3 days a week instead of 5 and figured out how much of a money difference there would be. We'd still be able to live and pay the bills but there would be less play money, which I suppose is alright if it improves my health. But on the other hand I am an exceptionally stubborn woman often to my own detriment. I'd like to make it to 40 before I cut down on work (if I have to). I'm 35 in April, so 5 years to go.

Thanks again all for your comments, they have definately made me feel better about myself.
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Date: 05.02.2010
From: Jill

Subject: Re: Struggling emotionally...

Kat Hi, im so glad u and Kellie had a chat, thought it might make a difference her reading stuff on here, ...I know U work full time, but IF and a big If u did work part time, U cld claim Disability Living Allowance....I get highest rate.....so mb that wld help u make a decision about work......got to be honest, Im not sure if ppl get DLA if they work full time....maybe the gang on here will know that ansa.....glad u r feeling better about yourself....tc Jill x
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Date: 05.02.2010
From: KayJay

Subject: Re: Struggling emotionally...

Hi Jill yes you can be in work full time and claim DLA. It's not means tested.
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Date: 06.02.2010
From: jen

Subject: Re: Struggling emotionally...

hey kat! felt compelled to comment as im also an 'arthritic lesbian' haha. although a few years younger than you (23). we seem to be members of an even more exclusive club. great!
i only started with RA 2 months ago so can't give you any advice but just wanted to say, im glad you've spoken to kelli and it sounds like you two will work it out. and as weird as this sounds, i know you're having an awful time just now, but your post actually gave me a bit of hope. im single and obviously everyone thinks 'oh im gonna be alone forever' even when they're healthy and single, but now that this has happened to me i REALLY think that and worry that i've lost any chance of getting married, kids etc. so to know you've managed to meet someone even WITH arthritis, and they've stuck by you and want to marry you despite the difficulties... well that sounds pretty awesome to me. i wish you two all the happiness you can squeeze out of life. :)
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Date: 07.02.2010
From: Jill

Subject: Re: Struggling emotionally...

Hi Jen, when kat wrote her post, it was as tho i was writing about myself, Kat put so much information into that post, and emotion, I could feel it all,I truly felt and feel how Kat said.....Jen regards your R.A. when we first get the diagnosis, wow is that a shock to the system,also im so glad that u have found this fab forum, that we keep going, im sure this forum will help u sooooo much, I didnt have a forum when i was diagnosed, ive been coming on here for a year now, and have met so many nice ppl on here, and had so much support its been unbelievable....some ppl just pop in here and out and dont come back, a lot of us pop in daily, some weekly, monthly, doesnt matter, but the more u pop in the more u will accept your condition and learn some of the tactics we have already been thru.......Jen, I do understand your concerns with finding someone that will underrstand your R.A., often we have to go thru a few boyfriends, girlfriends, b4 we find the right one for us, dont matter if we r straight, or gay, its finding the right person, the one that will support u, as u wld them, also the good thing Jen, U will be getting all the support medically u need, I didnt at age 26, lots fobbing off etc, but it all came to a head in 2002, what im trying to say Jen is, get your head around your condition, learn all about it, and when the time is right and u find someone u can confind in and that u feel are right for u, hopefully they will understand.....I have a daughter your age, and I wld say same thing to her,look after U first, all the other stuff will come to u, U will get married one day, if thats what u want, U will have kids......Jen what has the rhumatologist given u? are u on Methrexate? also sounds dat I know, how bad r u, what joints does it affect u?

anyway U take care, think about U....love Jill x
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