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Date: 07.07.2011
From: kylee

Subject: does anybody else find arthritis lonely

hi guys im going to appologise now coz im on a downer lol.
i dnt work not because i dnt wnt to because i cant with regular flares i cant afford all the time off most weeks and i have lost my last 2 jobs due to poor attendance. my husband works from 8am till 5pm mon-fri and i see noone as all my friends are working and i cant rely get around myself i applied to dla to have my claim looked at again as i have got worse i cnt cook i cant dress myself i cant open things like tins bottle lids and they turned it dwn and kept the claim as it was b4. i kind of rescent my husband for working and im stuck on my own with a dog to talk to i use to be such a socialable person always out and now im a prisoner in my own home in this stupid body that just seems to be falling to pieces i read my friends facebook status about them out at weekends and i just cant do that anymore im a 24 yr old living a 80yr olds live (no offence to anybody) but i feel i havent had time to be young and do what most 24yr olds do. Im so annoyed i can no longer do my life time hobbie of horse riding any more i rode my sisters horse last week and had to get off 2mins later and that hurt me more mentaly than physically as i dnt no what else i have to give up to be honnest i dnt think theres anything else arthritis can take away and it seems to of eaten away everything i once was

again i appologise for such a depressing topic just had enough today lol
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Date: 07.07.2011
From: lynn r

Subject: Re: does anybody else find arthritis lonely

im sorry you feel so down kylee im 34 and have 3 young children and like you im not at work because ive been so sore all the time i could not manage to work i am so tired all the time and like you i read my friends facebook pages and really feel down i used to be the life and soul of a party loved the biggest heels you could buy and now im in bed before 7pm and can only wear flat shoes i am currently awaiting to start mxt and have been told i will be allowed at most 6-7 units of alcohol per week i have just took a bootle of rose wine out fridge and it says 8.5 units so it looks like im going to be allowed less than a bottle of wine a week so im now i will feel isolated even more i am so sick i wish i had never heard of psoratic arthritis. i feel like all i do is moan thats why i come on the forum for a rant lol if you need to chat dont be afraid to i hope you feel a little better soon kayleex
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Date: 07.07.2011
From: nicci

Subject: Re: does anybody else find arthritis lonely

Hi kylee and Lynn, I feel exactly the same as both of you. I have just today got a formal diagnosis of psoriatic arthritis and none of the drugs I take work. I am in the middle of a flare at the moment. Going on to anti tnf soon. I have 4 children, one of which is a year old, life is really tough cos my older 2 don't help, hubby out 12 hours plus a day from 5.30 am. I have no help at all and nobody understands the pain and tiredness. They just think I'm.moaning and making excuses. Just want my old life back and to be able to enjoy my children. They are going to look back when they are older and all they will remember is me being moody. This disease really impacts on families its awful xx hugs to you both xxu
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Date: 07.07.2011
From: kazzie

Subject: Re: does anybody else find arthritis lonely

hi kylee let me give you some hope i am 37 but was 35 before this happened i had a good social life 2 kids a life ect then this ra caught me up omg i couldnt even go the loo myself my partner and mum had to help me i was admitted to hossy 3 times with pain ect and thought id never live again but thanks to enbrel am starting to see a way out am not saying i can go out dancing again as just had a pre op for a new hip ,but i can manage to get up and do a few jobs ect and couldnt be left alone as couldnt move .so there is hope its finding the right meds .if wanna talk am here loads of people helped me on here understand what i was going through .
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Date: 08.07.2011
From: Dilizjo

Subject: Re: does anybody else find arthritis lonely

Hi Kylee and a big hug,
really sorry to hear that you are feeling the way you do, I can empathise fully with the lonlieness feeling and being a prisoner in your own home. In one way I am luckier than most of you being 53 I was able to enjoy the pleasure of bringing up my 5 children mainly unhindered by pain but absolutely hate it that I can't do simple things like get down on the floor to play with my grand children or pick them up to get a lovely hug, sometimes my arms are that bad I can't even hug them:(
As for the DLA keep hindering them, contact your MP if your not happy and please sign the petition we have online.
Never apologise for having a moan we all know what you are going through and although we are not with each other in the flesh these forums are the best support I have recieved since being diagnosed with RA.
Take care xx
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Date: 08.07.2011
From: kylee

Subject: Re: does anybody else find arthritis lonely

hi all thanks for your supporting replies. i to have a 3 yr old daughter that is obviously with me all day i cant realy do much playwise with her and thats realy hard. i am always moody at the moment due to pain but i think mainly because the way my life has ended up im also on enbrol injections they were great upuntil 2months ago my flares are back and im having them every week and the moment i have a flare in right aarm im throwing tablets dwn to take swelling and pain down and all that is happening it it is jumping from wrist to elbow to sholder. my husband just ignores the pain im in i dnt get any support anymore i asked him why he is so cold when im in agony his answer was iv learnt to live with your moods and tears. well thats great but i havent and i shouldnt be doing this alone battleing the pain to get chores done if i dnt do them noone else will. i took my daughter to soft play area yesterday as i no she can run round and play with other children while i can sit down on the seats i was there 2 hours and hadnt spoke 1 word to anybody i just looked round the room to see mums with there other mum friends chat and laugh i felt stupid and so lonely the face i was st in a corner by myself. i think we should be asked how we re coping mentaly as well as physically at the hospital every time i try to tell my rhummy im not coping mentaly the topic is just brushed under the carpet. i hate my life at the moment stuck at home with noone to talk to but my 3 yr old day in day out. my husbaand cant see why i am so upset all the time when i explain he just rolls his eyes i explain he has my perfect life at the min he is in a job he loves he has work friends different people to talk to. when he comes home from work he will have loads of stuff to tell me things he has been doing at work conversations he had and i have nothing to tell him because i havnt spoken to a single sole for the 9hours he has been away. i used to talk to anybody and find making friends and conversation so easy and now i cant keep or even make conversatin with people coz i have nothing to say.
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Date: 08.07.2011
From: Dilizjo

Subject: Re: does anybody else find arthritis lonely

Awww Kylee my heart goes out to you, I am lucky in the way I have a lovely thoughtfull family who understand what I am coping with. I would speak to your GP about your feelings and how they are affecting you, they should in turn referr you to a cpn who will come and visit you at home and talk over your issues with you and hopefully be able to put some startergies in place to help you deal with them. If we lived near each other I'd be right over for a big hug and a good strong coffee.
take care xx and a big virtual HUG xx
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Date: 08.07.2011
From: kylee

Subject: Re: does anybody else find arthritis lonely

lol thanks i love were i live just very out in the sticks with no1 around or anything in walking distance iv sat for days thinking of things i could to do keep my mind busy but theres just nothing thought about selling jewellery online but finace reasons makes it impossible to obtain anything to get me started if any body does anything to keep the days wizzing by please share as im constantly clock watching
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Date: 08.07.2011
From: Lee

Subject: Re: does anybody else find arthritis lonely

Apart from my GF and 1 person from work and 1 friend from Liverpool who rings me every couple of days I dont really have contact with anyone who isnt a forum related chat.

I dont feel comfortable going out and as im off work im restricted to what I do anyway and can be very lonely not having face to face contact
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Date: 08.07.2011
From: mads

Subject: Re: does anybody else find arthritis lonely

Hi Kylee your email really hit a nerve, i agree with everything you said, though i am in a better position in trying to hold down a job. And i am not so young - 44. Mind you Kylee, you say you look after your 3 year old - that is a job in itself, you have to be alert all the time and constantly entertain. Mothers without RA find what you do tiring so don't underestimate your role. I have two children and a husband - kids do nothing and husband thinks he does a lot but doesn't. i get home at 6pm and start making the dinner and feel so resentful that i moan and shout and grump until i go to bed at 9 and everyone just thinks that they are the great ones for putting up with me! Anyway, i was with the occupational therapist this morning and besides talking about practical aids, she really focused on the mental anguish a person goes through when they get RA, and how it is so necessary to take time out to grieve, get angry and plan and organise your life. When i am at the stage where i have accepted it myself, she says that i will find it easier to tell those close to me in a calm manner my problems and my needs and eventually feel less resentful and angry. I am still in the weeping stage! its lasting awhile. I hope that was of some help. I wish we could all meet up and have a good ole yarn
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Date: 08.07.2011
From: kylee

Subject: Re: does anybody else find arthritis lonely

lol meeting would be good lol maybe all non workers should be housed in 1 area lol then we would all have people to chat to over a cuppa lol i see my rhummy on the 20th so may have to have a chat im sure ill prob make an idiot of my self by crying and not getting my words out lol
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Date: 09.07.2011
From: richard

Subject: Re: does anybody else find arthritis lonely

Hi Kylee, I can really relate to everything you`ve said. I was diagnosed with RA about 4 yrs ago and didn`t about think about the consequences too much because I put it down to just another illness that will go away as they always had done in the past. Since then,I think different now as the arthritis has progressed. Its not just the joint pain but the fatigue and general unwellness that just make me feel unsociable, although i`m not grumpy, i just prefer to be left on my own to deal with feeling crappy and get myself in a state fit enough to go to work. When i go to work,(in a warehouse) i get preferencial treatment to help me out but there are other workers who are of a mind whereby they think you shouldn`t turn up if you can`t do everything that they are expected to do which is annoying as i`d love to have the ability to do what they do, but you can`t make people understand theres something wrong if they can`t see it.Anyway, back to the point..I`m 41 and wish i had a wife and kids but I feel that I couldn`t get into a relationship now because it wouldn`t be fair on that person and i`d only make them feel miserable too so I`ve just got it into my head that I`ll always be single.I`m lucky that I have a good family though who are really supportive.
With regards to the horseriding, I don`t know if this will help but my thing is walking. I`m walking the 300 mile pennine way in short bits but i`m determined to do it even though it hurts alot. A week before I do it I take Prednisolone which temporarily reduces the pain and inflammation enough to go bonkers walking for a day. Maybe you could ask your Rheumy if he could help you with this just to give you a chance to do something you love to do. As long as you don`t take them all the time it should be ok.
Best wishes.. rich
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Date: 09.07.2011
From: sian

Subject: Re: does anybody else find arthritis lonely

Hi Richard,

Sorry to hijack the subject in question but your comment on * being single as to not make someone else feel miserable* really touched me. This condition we have does not make us what we are, its just a part of us. I am sure there is more to you than RA, I am sure you have lots to offer a woman/man whatever your preference haha. Anyway, look do sell yourself short look at the positives you have to offer rather than the negative or the postives of the negatives !! I can think of one ... you wouldn't be out all night with the lads drinking weekends!!
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Date: 09.07.2011
From: Sian

Subject: Re: does anybody else find arthritis lonely

I meant * don't seel yourslef short * oops ! Fingers dont work like they used to !
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Date: 09.07.2011
From: Sian

Subject: Re: does anybody else find arthritis lonely

Jesus .. * Sell* I will be here all day correcting my typos so you know what I mean!
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Date: 09.07.2011
From: gill

Subject: Re: does anybody else find arthritis lonely

HI,I am sorry you are so down,it get's to you not being able "normal",the pain can take over,big time,I get a lot of pain,but at least I can get out.....I can't walk far on my bad days,as I have the dreadful big A in my vack,but I can ride my bike,but I hve bad days,I just go out ........I am so lucky to be mobile in spite of it all,you have my sympathy not able to these things.....you get a total life change when you 're in your place.........we don't mind if you want to have moan.......you should the state of my kitchen door from my bad days,and the language is no bodies busness.....we are all here for ,and yes it is lonely sometimes as no one knows what it is like...... hope you feel a little better soon gill
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Date: 09.07.2011
From: marlene

Subject: Re: does anybody else find arthritis lonely

Oh guys i feel for you all. There is life after arhtur rears its ugly head. For some of us it takes longer than others. Take care not to push people away, its so easy to do. You feel so sad and lonely and in pain that life begins to be just about you, but all the people around us suffer too. Partners also have lost the happy bubbly ones they love, its hard for them as they are unable to take away your tears and pain. Some try to ignore it some try too much and smother you, until you come to terms with it yourself its hard to except that people do care and understand but they just dont know what to do. Try to smile at least once a day and think about the thing you will achive on your better days and life wont seem so bad after all. If you sat and wrote a positive list of things you will realise that life is still good. Take Care all of you and i am wishing you all well.
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Date: 10.07.2011
From: Shiffy

Subject: Re: does anybody else find arthritis lonely

Awr, that was really nice and heart touching Marlene.

I feel everything you said...

Nice to hear people like your self understands and gives a positive boost!
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