Is this 'acceptance' or have I lost it?!!!!

[wen.uk]

Hi all

Firstly thank goodness I can come on here and be so open as I don't think I could express my feelings as honestly to others for the fear they wouldn't understand.  As some of you know I'm just getting over a pretty bad flare and have only just returned to work.  Yesterday, feeling much better, I went shopping to buy an outfit for my Granddaughter's christening in 2 weeks time.  Cutting it short, I could find nothing to buy as practically everything was in black or dark grey, I don't really wear these colours as they wash me out and do nothing for me.

Whilst I was there I began to think that I've bought hardly any clothes for a long time and commented to hubby that I also desperately needed to buy underwear and made a joke that heaven forbid I was in an accident and had to go to hospital I would have to remove my undies first before getting undressed there!!!  Now at one time I loved to buy clothes and underwear, everything always matched, but I've just not had the inclination to do it.  I got home and could have sobbed and all I could I think of was "where have I gone, what's happened to the person I was?".  This illness has really took a toll on me in more ways than I'd ever imagined and I don't like the results.  I want to feel like the sexy sassy me again, I don't want to give everything up to it.  This may sound shallow and vain to you I know, but it's how I felt.

I had a long bath (with my most expensive oils so I didn't dry out!) and for the first time ever thought is this the acceptance I've never had, I know it's there and how it can affect me but I certainly don't want it to change 'me' and the core of what I've always been until the past few years.  Can anyone else identify with this?, have you felt anything similar?  I know it's a long post but hope you can understand what I'm trying to say.  I thank you so much for listening.

Wen x x

[kimbo]

Wen x x

Yes  Yes Yes, I have felt all that you are communicating.
I believe when were down or in a flare too long, we tend to think negatively.
I give myself- talk, a change and spin it back into prospective. Attitude and refocus really can have the power to remember who we are and we still are.

I think You need to find a good underware sale. 
And a date with your hubby.

   
Prayers and hugs
kimbo

[Pooh]

Hi Wen,
Wow! do I know where you're coming from.  For sure.  It's only natural to mourn for the old you.  It's the same with aging as it is with disease.  The same limits are acquired from both.  When you age your body lets you know "Hey, you can't do that anymore".  The same with this Sjs disease.  "Hey, slow down or you'll be sorry!". 

With me, I love a challenge and I guess I fight both to hard and to long sometimes.  However, the alternative scares me to death. 

No, it doesn't sound to me like you have lost it, only backing up to regroup.   I'm sure you will be in town buying those much loved undies that match real soon.  Don't let this disease win. 

Hugs, Pooh

[Scottietottie]

Hi Wen  

I hear where you're coming from too!

I find clothes shopping pretty arduous these days. Window shopping is OK. It's the physical effort required to get in and out of things in the changing room! You have to be feeling good to attempt it! Even if it's a good day - you're knackered by the time you get home which is all a bit of a turn off!

You are still you. You have a condition. That condition can make you feel pretty bad - but the condition is NOT YOU. Don't confuse the essence of you with the illness. You arec not defined by it. (Possibly confined sometimes - but not defined)

Three years ago, even with osteoarthritis, I could walk 3 hours in a stretch, two evenings a week. It was part of my job. I've quit that job because I can't do it now (even though the knee has been 'fixed'.)

If I still had that job I probably wouldn't have been able to spend so much time in here. A case of change of directing - refocusing, maybe.

Take care - Scottie  

[irish]

wen, Been there, done that, as the saying goes. I can relate to everything you said. I have 2 nice aqua blue bras and several t-shirts and slacks that I wear to the doctor. I also have a pair of slip on shoes that I wear to doc cause one has to be weighed and up on table etc.

On the other hand, I dress like a bum at home cause I have not been able to shop much for clothes for 5 years and even before that. I felt too darn miserable to even care what I looked like. My son got married in 2002 and it darn near killed me to look for a good dress but I found one. I told him if he had gotten married 6 months later I would not have made it through the long wedding day.

The underwear issue is the pits. Who has the energy to try on a bra, I ask? I have been just grabbing sports bras at Walmart for several years and just recently bought several good ones on sale. One of these doesn't fit good as I was pooping out and just took it to get the job done.

The worst of it is if my hubby would die I don't have a dress for the funeral and if I die I have one dress. One black one I wore to second sons wedding and I told hubby to have the mortician cut it down the back so it will fit!!!!!! Ya just gotta laugh otherwise you just take yourself way too seriously.

To sum it up, my panties have holes in them(except for the several I save for trips to doc), my bras are sagging, my makeup is drying up in the bottle and suntan lotion is my makeup of choice now. Life is not the same for any of us. The good thing is we have our families and we are alive to enjoy things to the best of our ability. We can still cry(sort of) and we have this site. Life isn't what we planned. But as the saying goes, we must "do the best we can with what is on our plate". Do you think we could get a group rate for bras and underwear? Irish

[Billydude]

Wen,  I hear you even as a man I feel the same way.   Just today I packed up all my cloths that don't fit to bring to the thrift store since I'm a size larger now.  Feeling the way I do excercise has gone out the window and the weight has come on.   I'll be 51 in a few days and have to come to terms that I'm a middle aged man now.  Its hard to accept!
Steve

[salsen]

Oh I so know what you are talking about!  My daughter and I use to do all day shopping sprees going from mall to mall and shop to shop until we found all we were looking for.  Now one store and I am ready to head home.  I just spent two weeks trying to found a new blouse for my nephews wedding.  All the new tops look like baby doll pj's or maternity tops .  I guess I am not styling but what is in the stores just does not seem to reflect the way I am feeling most days.  

The only thing I do keep in good shape is my underwear although they are basic cotton for both.  If they get loose from worn elastic I tend to break out in a rash and that causes more problems.  So if you consider a white cotton bra and  white cotton underwear a set then I do match.  Otherwise my wardrobe is mainly cotton tops and cotton pants.  Comfortable, cool and soft is what my style is like.  

The show "What Not to Wear" would have a field day in my closet!

[pudmott]

Hi Wen,
First of all wanting to look good is not vanity. I know when i've had a few days of feeling miserable and i have a nive shower or bath and make the effort to put on some nice clothes i look at myself and think gee thats nice and then i start feeling better on the inside. it has a flow on effect.
As Scottie said you are not your illness. It is something you live with. It sounds to me as though you are coming to a good plaace in your head where you are able to begin to see yourself beyond the illness and towards this new life and what it may bring. There are times when you will feel like its a pjs and stuff the world day but you are alsogoing to have the nice dress make up and sexy Wen days too.
Go find yourself a good underwear sale. Get some nice bras and pants. A nice outfit and go on a date with your hubby. Don't let this insidious liitle gift take you.

As i have said many times before. This disease may have my body but never will it get my spirit. I will play the game but we play by my rules. Im in charge.

Pud

[Tricia281]

Hi Wen,

It is hard to acceopt that the old you is slowly going or gone but i am soooooo tired of chasing her or trying to be her.  And so I thought today that maybe i should accept this new me.  I can still have days to get sexy and sassy, still have good days but that maybe I am missing out on being a new me by trying to be the one i once was.  Maybe I will have more to offer as the new me and it will save on lots of energy and guilt!  Now I just have to convince everyone else to accept it!!!

One thing Wen, you are not alone!! 

Tricia

[navydad]

I forget now what the old me is,, I long for it but really just forget what it was like,,, I forget what its like to not wake up and feel good about life and not bei n pain,,I really don't have much energy left after getting home from work to enjoy my house,, and to do the needed repairs around it,, I;m sick of the constant infections,, and sick of doctors who think neuropathy is something like a broken fingernail, as for clothes,,, it don't matter much what I wear anymore,, by the time i get home,, eat supper,, shower and try to watch alittle TV,, its time for bed again,, I hate the nights anymore,, constant drainage down the throat,, gagging on it ,, I;m trying to wean off the steroids right now,, down to 15 mg a day,, and as for the rest of the pills,, sometimes i just forget to take them,, between the exovac,, plaquinel,, lyrica,, which leaves me feeling spacey,, i;m ready to chuck the whole mess in the garbage and go it alone without them,, they sure don't seem to be helping much anyway,,

[pudmott]

navydad,
you might not think they are helping but if you stop you will more than likely see that they are. We are all playing a game of trade off. We have to trade somethng for something else. it sucks big time. My whole day is structured around making sure i am awake and refreshed enough to be able to go to work. I have to sleep when i'd rather be spending time with my partner, my housework is divided up into small parcels that i can squeeze in on my days off cause when i work thats it there's nothing else. Spontenaity is gone because everythng needs planning these days.

I don't like it but this is what needs to be done right now. I have the sinus drainage and am still waiting for the specialist appointment. THe ENT and immunologist in a couple of weeks. I have the issue of my thyroid which could be anything from being just hyperactive to atoimmune to cancer. Who knows whats going come out of that. Waiting is the hardest meanwhile everytime i put my head forward i want to choke.

I'm not a fan of this new life but i'll be buggered if im going to let it beat me. I have made adjustments and continue to do so every day. I won't let this thing win. Its a tough road navy dad but don't give in. hang in there and know you have allthe love and support you need right here. We are on this journey with you and are feeling your pain.

Stick with us mate

Pud

[Billydude]

Navydad and Pud.....on the same page with the drainage.   Sjogrens does that to us.  No mucus where it should be and too much where it shouldn't.   For me its just like the sweating.   Even as I type this little rivers are running down my face but the places that should sweat are dry as a bone.
Steve

[wen.uk]

Ladies, ladies, ladies and gents just what can I say, I've had help and advice before from you, but this time you've truly excelled yourselves.  Never have I felt so understood and your down to earth and heartfelt advice has really hit home to me, you've moved me to tears with your empathy. 

Now for some good news, Kimbo and Pooh I've been to the shop and bought some rather luuuvvvvly black and pink underwear so that's given me a lift in more ways than one !!!  I'm still on the shopping trek though as still not got anything for my Granddaughter's christening (perhaps the black and pink undies with my dressing gown? love to see the vicar's face!)  But as you all say, it's just so tiring shopping then getting dressed and undressed again.

Scottie I loved how you say 'the condition is not you' and Irish I've really laughed about your funeral dress or lack of it.  Have to say too Pudmott I think your attitude is fantastic and I' hope some of it rubs off on me.  You've all made such relevant and poignant comments that I feel as though I understand where you are coming from too, and interesting to see that you gents amongst us feel the same way too.

Once again thanks sooooo much, you've really made my day.  I'm sending a huge group hug to us all ((((())))))

Love Wen x x

[beverley]

Wen,
I have to take a lot of care to try and dress well because of going into school everyday, and I do buy clothes ... but oh I know exactly what you are saying.  My big problem is my feet.  They get so painful, particularly being on them all day, and I can't wear the lovely shoes that I would like to wear.  It really takes away from how I feel about my appearance.  I'm not that tall and I used to wear heels (not huge, but enough to make my legs look a bit better LOL) but now I've almost reached the stage where slippers or sandals are all I feel comfortable in.  Also I can't wear eye make up any more.  Didn't wear that to work, but enjoyed glamming up to go out.  Also I've put on weight AGAIN and I don't seem to be able to find the willpower to do anything about it ... vanity?  No I don't think so, just needing to retain a bit of femininity.  But our friends here are right, at the end of the day it's the person that counts, not what they look like.

Hope the good times continue.
Beverley

[pudmott]

Hey Wen,
Forget the dressing gown Just go in the black and pink underwear. You will have all the vital bits lifted and covered. Just add some heels and a bit of lippy and you're good to go. Hi class fashion on shoe string energy. IM sure it will make the vicars day

Pud