Have I lost my identity?

chrissie691

I feel really low today. I know it was only Wednesday they told me it was RA but I still can't get my head around it. I really thought that it would all go away.

I start the MTX next week. I know that will help but the thought of giving up alcohol.

Chrissie is a party animal, always has been. Love dancing, love drinking, love having a good time. Got weekends, holidays and a few parties this year I WAS looking forward to. Now what?

Can't wear my contact lenses, can't wear my killer heels, can't even press the top of my deodorant.

I'm sorry to rant but I'm really fed up with it. I know you will understand as a lot of you are in the same boat but it's hard isn't it?

Chrissie xxx

theresa4

HI Chrissie
I know just how you are feeling Ive had RA for 4 years and felt like my life was slowly disappearing but the people on here are making me realise that my life is changing rather than ending. Ok I cant wear the heels I used to wear but have found some really pretty sketchers shoes and trainers and am coming to terms with them. I dont go out dancing unless Ive had a steroid depo but still have a good time with my friends. We go out for a meal and chat and laugh all night. And then I rest the day after

Make sure you use this site to help you deal with how you are feeling we all understand how you are feeling and what you are going through. We cant fix it or ask arthur to leave(ive tried!! including denial :roll: ) but we can give you a shoulder to lean on.

Love theresa x

chrissie691

Thank you Theresa. I feel bad for moaning as I know a lot of people will be worse than me but it's coming to terms with it that's a struggle.

Luv Cx

theresa4

chrissie691 wrote:

Thank you Theresa. I feel bad for moaning as I know a lot of people will be worse than me but it's coming to terms with it that's a struggle.

Luv Cx

Dont be sorry, otherwise my apologies will take days and a few hundred posts :oops:
Coming to terms with RA is a long process as it goes a way then kicks up again, sometimes the meds seem to work then a big flare kicks in you just get used to getting some of you back and it throws some more at you. I still struggle somedays with acceptance and still question my rheumy if they made a mistake :oops: I dont want it and would stamp my feet like a petulant child if I could :roll:
Take care and stay in touch

Theresa x

lindalegs

You're still Chrissie, you can still have a dance and a good time, life doesn't end with arthur ....you just feel it might just now.

You have to learn to manage your disease, don't let it manage you. You may not be able to have the live you had on bad days, or even bad spells but these don't last foerever, you might still be able to wear your 'killer heels'.

If you like a drink Chrissie have a word with your Rheumy team, alright you might not be able to drink yourself into a stupor but you might still be able to have some alcohol, just check first. I'm on Mtx and I still have a drink, just not on the days around when I take it.

You'll still have holidays, wonderful things will still happen to you, you'll just have to do things a bit differently.

I know Chrissie, I've had an aggressive strain of RA for 24 years, been married 31 years and have brought up two lovely sons so you might have some battles ahead but life is still lovely.

Luv Legs

robertls

Hi Chrissie................

Have you lost your identity..............No definately not.....

Have you got to make some changes................Yes absolutely....

I was diagnosed last July............

How much the changes are depends on how your condition is now.......and how it progresses

I still get out with my dogs..........Still have the odd drink.......Still enjoy life...

Is it hard work..............well..............somedays harder than others....

I can't dance now....................but I couldn't before

Now you will find your true friends................and meet some you never knew you had....

Try to keep positive................yep easier said than done......

Luv and hugs to you.......

Rob x

dreamdaisy

It does change you, you do become a different person because you now have the most unwelcome parasite in the world living inside you. Arthritis takes away a hell of a lot but, in return, it teaches you patience, grace, and a stoicism you may not realise is there. I agree that those three things are not fantastic gifts, but they are valuable. In my case it's taken years for me to learn them and I still have the odd wobble. I feel resentful more than anything else, especially when I read on here the success others have had with the drugs that have failed me. Grrrrrrr. It isn't going to change, however, it isn't going to get better, it isn't going to go away, so I have to get on with it.

Regarding the alcohol: enbrel sent my liver haywire in October/November 06, so I was taken off all meds and alcohol and spent January to April 07 in a magnificent sulk (and in bed 'cos I couldn't walk.) I was then put on injected meth ('cos I got rashy with the pills) and told to stay off the booze. Liver function figures soared with the meth, so I thought 'bugger it' and started drinking again. They dropped. And dropped. And dropped. There are some people who can drink whilst on meth, but you do have to show some restraint. (For me that's about half a bottle of white wine a night, if I want it). Some nights I don't (much to my amazement). You might be one of those people too.

Regarding parties, well I'm done with those. I find them a chore and an ordeal thanks to the arthritis and the complete and utter lack of comprehension about it from my friends (whose lives continue on the same, smooth path they've always had). Your views will change, your priorities will alter. It will take time to adjust to the new you - in the meantime, sulk for England, rant and rave to us 'cos we know what it's like and we won't get cross. I promise.

I am very much like the pre-arthritis DD. Mine started in 1997 but wasn't diagnosed/recognised until 2006. I suppose I'm fortunate in that I always was quite a lazy person - now I have the perfect excuse for lounging around! I felt quite distressed after my first dose of humira because I felt something akin to well. Most unusual and I couldn't adjust to it. Thank goodness the humira is losing its efficacy! (Humour is my battleshield.) Dreamdaisy

speedalong

Hi Chrissie

- you rant all you like my girl!! This is the place to do it and no one will judge you or get fed up of you doing so.

I don't have RA so I can't really help re the meds etc However the life changes don't all have to happen at once ... they tend to happen gradually. They don't change who you are inside - but how you tackle and cope with life. You'll have plenty of ups and downs - enjoy the ups and don't let the downs spoil them.

Keep reading and posting, you aren't alone,

Speedalong

chrissie691

Thanks for all your kind replies. Feel a bit better now, had a sleep.

I think a sense of humour is going to help. I keep looking at people jogging and cycling and I say to myself 'never going to do that again'. Why? I never had an inclination to do them anyway!

Thanks again!
Luv Chrissie xxx

angel1

You won`t realise it at the moment Chrissie, but you ARE dealing with your illness in the best possible way i.e. railing against it, and all the changes you are facing in your life. Having been in denial, this is now acceptance.

If you didn`t do that, you would be unable to move forward, when the time comes. And the time will come, as Legs has said, albeit a different time. You absolutely have to grieve for what you are losing NOW, in order to accept what is to come.

In the meantime, post regularly to people who, not only understand, but will support you every step of the way.......Ange.

cthornley

Hi Chrissie
it doesn't feel like long since it could have been me writing this very post (although its actually been 10+yrs)
you don't have to give up all the good stuff, just approach it a slightly different way. You will find out this through trial and error as you go along but initially its all a bit over whelming (I was just starting uni when I was diagnosed which couldn't have been worse timing) :roll:
Alcohol is a bit of an interesting one...some people say you must avoid it with MTX but most dr.'s actually agree that as long as you are sensible and moderate your intake that its not too bad. Just remember your liver will be working really hard with all the drugs you are taking ...so you mustn't stress it too much by overdoing it with another drug (alcohol) but there is no need to abstain from it completely.
Ha - My dr husband is the 1st to pour me a glass of wine!
Heels are my main bugbear - I am tiny and used to wear 4inch heels on a regular basis, its taken some getting used to but i've had to give them up on the day to day. As my condition has become more controlled over the years I have been able to wear heels for special occasions and i've made sure each and every pair is now really special as I relish being able to wear them on those days oh and they aren't quite as extreme as they used to be.
As you get your condition under better control the more you will be able to do....as for holidays since being diagnosed i've visited 8 countries all around the world and i'm off for a well deserved week in the sun in 5 days time and for fun, well I do live in Newcastle....:D
If you ever want to chat we'll be here
Chrissie (the other one :P)

vikki30

Hi

I know exactly how you feel, this time last year although suffering some pain for years, i t was bearable and mainly at night.

I am a 30 yr old single parent to two beautiful little girls age 4 and 6 who are bursting with energy, but are too young to understand that mummy cant always play like i used too, my ygst started crying the other day because i had told her i was poorly as i was in agony and she thought i was going to die, it was hard to explain that i had arthritis because its not like she can physically see something wrong.

I have been in lots of pain today with my left elbow, wrist knuckles and fingers and cant grip or hold anything, i cant even pick my little girl up anymore and that is really hard when she comes running out of nursery for me to pick her up and give her a cuddle.

just hope the next lot of meds work as mithatexrate made me ill and has done damage to my liver.

sorry for the rant just feelin a bit low.

hope you feel better soon, take care

vikki xxx

woodbon

HI Chrissie,
I am so sorry you have RA and feel so down. You are bound to be feeling lost and upset, its only natural, but I hope with time you will come to terms with it. Afterall it could be that once you have the correct medications sorted out, you will begin to feel a lot better, but at the moment it must be hard for you to take everything in.

I'm sure your life has lots of fun and happy times left for you, but it will take you time to see them. I think lots of people on here will tell you that they have been through the same things as you, but managed to come through. I have OA, but still have down days.

I hope that you soon get the help you need and find the right drugs to help you. Lots of love Suexxx

page35

Hi Chrissie

i love a dance and a drink too
i cant dance like i used to but i still give it a good go, in me front room anyway
i have RA am 34 and take mtx and Hydroxy, and have the odd drink now and then.
you never know the drugs might work for you straight away and your be off dancing again

Hi Vikki
i have a 3yr old and can sympathise with you, it is so hard when they want to play and it hurts just to hold their hand let alone pick them up.
just sending you a hug and hope things improve
take care

carolanivey

Hi Chrissie,

It's okay to feel overwhelmed right now. You've received quite a blow and no one (here, anyway!) expects you to get over it in a few days.

What you're going through is basically grieving a loss, the loss of perfect health. A grieving process has stages. You've already gone through stage 1 - denial. Now you're in stage 2 - anger. You're probably going to go through 3 and 4 - bargaining and sadness - before you get to the final stage. acceptance.

Be gentle with yourself and allow yourself to go through the steps to get to where you need to be, where you can look forward to the future rather than dread it. It's tough, but you've been forced to grow up (I don't mean that in a negative way) a little sooner than most.

As for drinking, I can tell you that I've been on methotrexate for over two decades and I have a drink or two on the weekends. If I'm going on vacation and know I may drink more that week, I don't take the mtx that week. At first you'll need to abstain from alcohol until you get settled into the routine of taking it and having your blood tested regularly. After several normal liver tests, ask your doctor if it's okay to have one every now and then. Just don't binge.

Hang in there, you're going to be all right. ((hug))

elnafinn

carolanivey wrote:

Hi Chrissie,
What you're going through is basically grieving a loss, the loss of perfect health. A grieving process has stages. You've already gone through stage 1 - denial. Now you're in stage 2 - anger. You're probably going to go through 3 and 4 - bargaining and sadness - before you get to the final stage. acceptance.

I agree and I would also add that you may well not go automatically from one stage to the next, but may yoyo inbetween one or two of them but you will get there in the end. I would also add that there is no set time limit. Keep well away from anyone that tells you there is. It takes as long as it takes.

I wish you well,

Hugs
Elna x

angel1

As a Counsellor, I am always very reluctant to make firm statements about how people deal with the grieving process, because everyone reacts differently. Some people experience total acceptance immediately, without any denial or anger. This, however, is rare.

It is absolutely necessary though, for someone facing a huge loss, to be allowed the time to experience whatever emotions are being played out for them. They need to achieve the self-awareness to understand these emotions, and how healthy they can be, leading to full acceptance. How long this will take, will vary from person to person..........Ange.

chrissie691

Thanks for all your kind replies. They have really helped me. I'm sad, I'm angry, I'm determined to not let it beat me, I alternate between so many feelings atm. And I'm in so much pain. It really feels like it's taken over. I start MTX tomorrow, I'm going to take it after breakfast. My hubby is off then so he can keep an eye on me lol. Wish me luck.

Thanks again

Luv Chrissie xxx

dreamdaisy

We will be thinking of you. I remember the first time I took meth, and it was a doddle. Yes, side effects exist but they are not guaranteed. Good luck. DD

madness1985

Hi Chrissie,

When i was diagnoised with RA i felt like i wasnt vicky any more. But you know what i may not be able to carry my couisens shopping bags (i love carrying bags lol), i may not be able to shop til i drop but i can get my oh to push me and believe it or not its brillent coz my oh has learnt how to shop, and we spend more time together and i love that fact. Im 25 now and im planning a wedding and i intend to dance, have a little drink and enjoy it just the same as if i hadnt got RA.

But do you know somthing RA has given me and thats my True friends. Ive had it tough but i have some of the most brillent friends in the world who listen to my moans, they pick me up and they dont mind talking to me online instead of draging me out. My friends come to me some of them live 3hours away and we stay in and have a good chat and a giggle!

I was a major high heel user infact i hated flats as im only 5ft! But now i love my trainers they are comfortable and there are lots of different types even ones with diamanties on so they look cool to! I broght some red shoes not so long ago pep toe ones but flat and they look fab.

RA isnt the end of you or your life its the start of a new chapter and a chapter of compromise. Some days i can drive som days im so full of fatigue i crnt so instead i change my day and have lots of mini naps.

Please dont feel its the end because it isnt.

p.s I do moan alot about how bad things are but thats because i dont just have RA i have many other health related problems.

Take care x

tkachev

hi Chrissie,

You honestly wont feel this bad forever. There was a time I could not get out of bed unless I took one very painful hour and somebody standing by me the whole time to give me a gentle tug here and there plus help with the final push to standing.
Now I try to get out and about as much as possible and I have a good time when I do.I cant dance like I used to but still have a good few baileys. I never did wear heels-I am a trainer girl.

The parties not over yet,
Elizabeth