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Date: 22.10.2010
From: ScaryFeet

Subject: Can someone please help me, I'm lost

Thanks for opening this and I'm sorry for sounding so dramatic but its how I feel. I've had RA for nearly 2 years now and instead of settling down into a pattern of acceptance and painkillers I seem to be withdrawing more and more and falling apart inside. Its hard to believe that one of the only posts I put on here in the early days was asking if anyone still manages to run with RA as I was still planning on doing a half marathon and now it seems like a marathon getting out of bed some days. God how naive I was to think I could beat this by ignoring it - I feel like such a failure. I am 44 going on 74 and can't bear the thought of spending the rest of my life feeling like this. My RA nurse has said I need to develop my own coping strategy - whatever works for me to help me to live with this chronic disease - does a half a bottle of red wine, chocolate and a lorazapam before bed count as a coping strategy? So many of you on here seem to have got there - how did you manage that, where on earth did you find the energy and willpower to motivate you enough to stay positive? I was just about to type 'I'm sorry for being so...........' but I'm not sorry - I'm angry and frustrated and scared, I hurt, I feel lazy and old and ugly and fat and did I mention I hurt......all of these things but not sorry. Please help me to get out of this place and to somewhere where I can see a purpose to all this. xxx
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Date: 22.10.2010
From: athena

Subject: Re: Can someone please help me, I'm lost

hi

i just read you msg,i feel for you i really do, you are not ugly fat or lazy, you are in pain and trying to come to terms with having a life long chronic illness, you are not alone there are lots of people here you can talk too,i find writing how you feel helps even if its a little bit, you are not a failure and its normal to feel angry and scared, i only got diagnosed with RA 3 weeks ago and am still feeling numb,well my brain is the rest of me certainly isnt, im in a lot of pain and feel alone in dealing with it all, maybe i feel sorry for myself,but why not we are allowed to, everytime i speak to my family i get comments like "theres worse people off then you" or "people are taking worse meds then you" i know all that but its not really what i want to hear.

have you got a family who will listen to you? or have you thought about counselling? its a very big thing to adjust you life and accept you have RA but you will never be alone on here and it is a great help as so many here have the same and understand what you are going through.

your right it is like a marathon every morning just getting out of bed and trying to get through the day,its takes me ages to get down the stairs and am struggling to keep working and act normal,there is a purpose to live and part of that is fighting this disease, im certainly not going to let it win, im stronger then RA and its not going to rule my life forever.

ive been on meds for 3 weeks now and trying to be positive they work for me, what are you on? dont think it will always be like this, there a lot of different meds out there and if you havent found the right combination yet dont give up that you wont,there is some great results and when not if you do find the ones that work for you things will seem a lot better.

of course life is going to be different,it can never be quite the same as it was before but dont give up on your dream of running that marathon its just gotta be delayed for a while.

im 40yrs old and didnt think for a minute it would be like this but it is and i cant change it we just have to learn to live with it the best way we can.

take care and keep in touch,dont suffer alone x
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Date: 22.10.2010
From: Sally

Subject: Re: Can someone please help me, I'm lost

Hi Scaryfeet - love your name btw!

'does a half a bottle of red wine, chocolate and a lorazapam before bed count as a coping strategy?'
Yes it does as far as I am concerned lol! And I do know where you are coming from. I've had sero -ve inflam arthur for over a year and can hardly believe how my life has changed. It's all very well telling you to develop a coping strategy but it takes time to make the mental adjustment and it sounds as if you are doing that.

I think getting angry is a necessary thing. For me it is the impetus to change things, to challenge myself and others (mostly others, don't have a problem challenging myself, if anything too hard on me!) I'm all the things you say you are - angry, frustrated and scared. My anger makes me demand support from people (health professionals, adult services as well as friends and family.) It also makes me get up in the morning. Like you, I don't know what is going to happen to me but it's not going to happen without a fight from me.

One of the things that helps me a bit is to have a list of things to do for bad days. The usual, like painkillers, hot water bottle/heat, mediation, stretches. But also someone suggested I have a Plan A and a Plan B for every day. Doesn't always work and I don't always remember to look at my list but when I do it's easier to cope. At least I feel I've done something to help myself that day.

I don't know what your circumstances are but you are not alone. There are a lot of us in your situation and we are here to support one another.
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Date: 22.10.2010
From: Sally

Subject: Re: Can someone please help me, I'm lost

sorry, that should have read meditation not mediation! Though a bit of mediation can be quite helpful some times lol!
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Date: 22.10.2010
From: ScaryFeet (Lisa)

Subject: Re: Can someone please help me, I'm lost

Thanks very much for coming back to me so quickly, and for the positive things you have said. Its weird reading what I typed earlier - its almost like a different person - I know the positive, fighting pre-RA Lisa (thats me!!) is still in there somewhere and maybe you will help me to drag her back out sometimes.

I really like the plan A & plan B idea Sally as one of my biggest issues is having all these plans (and lists, lists everywhere!!)but waking up the next day and not feeling able to do any of them - maybe your idea will make sure there are still some 'softer, more gentle' (cue dreamy music!) things I can tick off the never ending list.

Athena - I'm sorry to hear you are a newbie - I remember only too well how it felt to get my diagnosis. You certainly have a good attitude towards dealing with things and I'm glad we've made contact. I hope I will be able to give you some help and support too as you go through the acceptance phase. You are right to suggest the counselling - I'm going to speak to my GP about it as my RA Consultant can't refer me....

So thanks again to both of you and big hugs over the airway - I'm off to uncork my coping strategy!! xxx

PS ScaryFeet came about when I started running and needed a nickname - it comes from Monsters Inc - the part where he has his training session in the morning before going off to scare children!! Now they are ScaryFeet because they haven't had a manicure in too long and my toenails need cutting!!!
xxx
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Date: 22.10.2010
From: Sally

Subject: Re: Can someone please help me, I'm lost

You are welcome, will be calling on you one day soon for same or similar, no doubt! Enjoy the wine and be in touch soon.
xx
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Date: 23.10.2010
From: karen

Subject: Re: Can someone please help me, I'm lost

hi i ma sure you are writing this bout me i was copin as had ra a year and tried mxt and orther meds but its now just worse worse i cant even move today and been like this about 4 days i have had enough i feel like a totatly waste of space am 36 with a 4 year ols that i cant even get up to see to i just cant see me goin on like this forever
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Date: 23.10.2010
From: Rose

Subject: Re: Can someone please help me, I'm lost

Hi Scaryfeet, I have just read your first msg and all the answers and would just like to add my support and understanding to you as well. I have had RA now for 4 years or so, feels like forever, and still am all the things you say you are. But with support from people such as those on this forum I have been able to keep together and strong to fight this darn disease. I do so hope you are feeling a little stronger today.Take care and I hope we can keep in touch. (((hugs))) Rose X
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Date: 23.10.2010
From: Rose

Subject: Re: Can someone please help me, I'm lost

Hi Karen, I am so so sorry you are in so much pain. It sounds to me like you are having a flare. Can you contact your doctor, RA Nurse or Consultant even if only on the phone to see if they can help with some pain meds. There are a lot of different ones out there to help us cope with the pain. Also have you tried one of the anti TNF Bio drugs that are around now. I am on Humira as well as MTX and have found that that combination along with quite a heavy dose of pain killers make things more bearable. I really feel for you and admire the fact that you still can look after a little one. My children have all grown up now and I am much older than you are but I really admire all the younger mums out there as it is hard enough to cope with just yourself to worry about without little ones as well. We are here for you with support and comfort Karen and I can only say that and pray that you find better days ahead very soon. (((gentle hugs))) to you Rose X
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Date: 23.10.2010
From: Rose

Subject: Re: Can someone please help me, I'm lost

Hi Sally, Cant leave this thread without letting you know I love your sense of humour. Thank you and take care. RoseX
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Date: 23.10.2010
From: Sally

Subject: Re: Can someone please help me, I'm lost

Thank you Rose :)
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Date: 23.10.2010
From: athena

Subject: Re: Can someone please help me, I'm lost

hi scaryfeet

thank you for your reply,i hope you are feeling a bit better today and im glad you are going to see your gp about counselling and there is always this forum to come too.

im sure i will be calling on you too when things get to much,i think emotions are very up and down as is pain and everything else that goes with arthritis,i have felt alone since ive had RA but had a lovely phone call from my mum so that has helped.

we got to take each day as it comes i think and i dont plan to far ahead now as i never know if its going to be a extra bad day or not,and i think now if i cant do the housework one day it will still be there the next and dont let it worry me

sending you and everyone here hugs and hope you all are having a good painfree as possible day x
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Date: 23.10.2010
From: kazzie

Subject: Re: Can someone please help me, I'm lost

thanks rose jus re read my post and my spellin is awfull .i hve tried mxt and orther combaintion of drugs but nothing worked and had bad side effects ended up in hospital so they have put me on sulpher something i am on codine amatrpline and paractmol and arcoxia for pain relief but just touchs my pain slightly .my mum has been to decorate our bedroom and there is stuff all over the house and am so frustated that i cant sort stuff out my mum is brill and been here all day helpin me .sorry just feelin sorry for myself today am sure every suffers bad days
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Date: 25.10.2010
From: Rose

Subject: Re: Can someone please help me, I'm lost

Hi Kazzie,Please dont apologise for feeling sorry for yourself, you certainly deserve to feel sorry for yourself and get frustrated too if you like. I know what you mean though, it drives you mad when you cant do things for yourself and have to rely on others. I am so glad your Mum is brill and is a great help for you, I am sure she does it with love for you. This really is a crappie disease we have to put up with and I get just like you and feel so sorry for myself too I just want to scream a lot. Trouble is I get a sore throat then lol.
It sounds like you have tried lots of meds and I feel for you when they dont work, that in itself drives you crazy. I have finally been put on a Morphine Patch with panadeine forte - 2 x 4 times a day. Not sure if the doctors use this where you live but maybe if you havent tried these you may be able to give it go or something that is similar. Your Dr. will help. I hope you get some relief really soon and are having good days now. In the meantime we are here for you and I send (((gentle hugs))). Keep us posted. and Take care. Rose X
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Date: 26.10.2010
From: kazzie (now tinman )

Subject: Re: Can someone please help me, I'm lost

hi rose thanks for that all i seem to do theses days is sit here moaning i now call myself the tim man lol as when i try walk i am so stiff and cant move my hands are that swollen they feel like rock i keep tryin to move around it dont seem as bad we are goin the trafford centre this afternoon as my partner says a change of scene for me but the truth is am scared stiff but i know he only tryin to help we only goin for a coffee lol cant manage shoppin .anyway thanks for understandin
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Date: 26.10.2010
From: Angela

Subject: Re: Can someone please help me, I'm lost

Hiya Lisa, Iam 54 and had RA for 2 years just like all of us the shock horror of having this all my life.
At first I was very depressed and got worse and worse. Like you say I felt like a sevety year old, especially when riding my mobility scooter as I couldn't walk at all for 2 years.
As time went on my coping strategy was to read up on absolutely everything about this disease so that I could see what I was dealing with.
I then started to focus on getting my insides as right as I could anyway, no more drink,no more crap food. I took lots of natural products now whether they gave me a placebo or what I dont know but I felt lifted.Maybe it was because I felt I was doing something possitive for my body??
I tried to find other so called cures,researched them,and tried a few.In the end I went with traditional medicine (the mtx) and today I am tons better mentally.I think by making the disease part of my interests in life has helped me accept it somehow
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Date: 27.10.2010
From: c

Subject: Re: Can someone please help me, I'm lost

Hi scaryfeet im 35 just been diagnosed with sero neg inflam arthritis. It is such a scary disease Thankfully the sulfasalazine has started to work so the docs say hasnt reduced the pain im in though and the to top it all i get water retention as well as a second helping of Carpal Tunnel tried to stay positive at first but it doesnt help for long. I understand the lazy, feeling old fat ugly. doesnt help does it when you hurt so much ya just lock ya self away friends become phone calls because ya now wrapped in bed at 8pm i really dont want to be like this what did ever happen to growing old gracefully ??????????
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Date: 27.10.2010
From: ScaryFeet

Subject: Re: Can someone please help me, I'm lost

Wow! I've never had so many cyber hugs before and I feel so much better for hearing back from you all - THANK YOU ALL SOOOOOOO MUCH XXXX

Do any of you feel better for letting off the steam but then get uncomfortable with the support and help you get because you feel embarrassed for wingeing and because you are not used to being so open about just how crap you feel???

What is great is being able to do for others what you have all been doing for me and I hope that the replies I post on your topics go some way to helping as much as you are helping me.

Thanks again
Lisa xxx

PS Wanna talk about the flu jab but I'm gonna start a new thread.......be interested to hear what you all think........xxx
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Date: 27.10.2010
From: ScaryFeet

Subject: Re: Can someone please help me, I'm lost

C

What I find is that I make all these dates to meet up with friends when I am having an 'up' day then the date comes around and I am normally on a 'down' day and really don't want to be around anyone other than my lovely hubby so I cancel.

I now find that I have wittled my friends down so that only the ones that really seem to understand that this will happen are in my contact list - the rest get the occasional email and birthday card!!

As for being tucked up in bed by 8pm - I've bought a lovely huge fake fur comfort blanket and have a really comfy sofa and don't have a TV in our bedroom for a reason - I leave the RA at the bedroom door as much as possible for the sake of my marriage and my sanity so no matter how bad I feel I get out of bed and come down stairs (I'm lucky enough to have a loo down here). We always go to bed together (ah! Only married 4 years but hope it doesn't wear off!) and we try and stay up until 11am but if I need an early night we read and eat chocolate or have a hot toddy before I drift off and Steve keeps reading. He's a bit of a sleep head anyway because he works hard and uses his brain far too much!! and has to put up with me and my RA!!

Angela - really interested in what you said but terrified at the thought of giving up my red wine!! I don't smoke and despite what I've just said don't eat a vast amount of chocolate etc and we cook everything from fresh, don't use processed food etc but I've heard lots of times about the benefit of good diet......but I also have a newspaper article where the Arthritis Association recognises the benefits of red wine for both RA and the prevention of Arthritis....Yipeeeeeeee!!!! I'm bound to have loads of questions for you though as I'm interested to hear of things that have worked...

xxxxxx
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Date: 27.10.2010
From: Angela

Subject: Re: Can someone please help me, I'm lost

Hi Lisa, I was a big red wine drinker before all this but suffered palaptations in the middle of the night, and big hangovers even after a couple so my body was already telling me to stop, but I know what you mean, and if it makes you happy then why not do it.
I went on a radical health plan at first. It consisted of taking M.S.M,which was supposed to reduce inflammation, black strap mollases, again to reduce inflammation, vit c, fish oil, evening primrose, meadow sweet tea for pain, and magnesium. I also cut out tomatoes, peppers, potatoes, citrus fruits, anything pickled,and all dairy products.
I did this for about 6 months,and I mentally felt good, but on having blood tests my esp and crp were just rapidly rising.
Then I carried on the same but took sulfasalizine, and after another 6 months still my bloods were sky high but i felt fine witihin myself,still phsically disabled but only little pain.
Then the bloods were getting to high and scary and I began to realise I wasn't going to win so I had to give in and go on the MTX.
I never wanted to start the toxic meds and that in itself was another obstacle I had to deal with.I stopped taking all natural stuff then apart from the fish oil.
Now I watch my bloods like a hawk, and if anything looks dodgy, I am onto it straight away. My esr and crp is still up and down, but never as high as it did.
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Date: 29.10.2010
From: Dalton

Subject: Re: Can someone please help me, I'm lost

Hi Karen, I also have young children 2 and 7 to be exact - ive been diagnosed with RA for almost a year and a half now and im only in my thirties - I felt so depressed when I was first diagnosed but you do literally have to dig deep inside and find the strength to carry on every day rather than let the disease destroy you. I have tremendous pain and have seen a podiatrist who has been special insoles for my shoes because the pain is so bad and I am on an extreme amount of medication including disease modifying drugs and also amitriptline and gapapentin as I have developed problems with pain and numbness through the nervous system caused by the RA. My hands become numb and I have major pins and needs in my hands and sometimes feet. It drives me insane but my GP and Consultant have both said that a postive state of mind really helps with this condition. Dont get me wrong I do have really "down" days but I give myself a good talking to and think of my beautiful children and tackle another day. It would be helpful to know if anyone else has developed these problems with RA as you really do feel alone with this condition sometimes. x
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Date: 03.12.2010
From: dolly

Subject: Re: Can someone please help me, I'm lost

hi scary feet["cute nickname] shows you still have a sense of humor. my name is dolly. you will see my name on the message board replying to some other people and oh yeah read my subject title "got rheumatoid arthritis , any questions?" something like that i can't go back and see exactly how i worded it cause i might lose this site. very new at computer stuff. when i read your story it put a lump in my throat and a tear to my eye cause it was like reading about myself somewhat 41 yrs ago. yes i'm 56 and have had ra for 41 yrs. i've had 30 surgeries. medication wise it is trial and error. you have to try all the medications the doc wants you to. it takes time to find what will work for you . everyone with ra is different. wwhat will work for you will not work for someone else. when i got pregnant with my son i felt no symptoms. after i had him the ra just took off like a tornado with nowhere to stop. when i needed to pick him up i had to lay down beside him and roll him onto my chest then sit up. that's just a small example of how i dealt with a situation back then. today i'm on ptednisone, humira and the painkiller hydromorphone [that's a branch off of morphine] after the doc figures out which "cocktail" works for you things will seem better. believe me i thought it was never gonna get better. i can't do everything i want but i'm content considering we don't have much choices. please feel free to ask anything. you take care now. talk soon.
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