what do you miss the most

the thing that change with illness what do you miss and have you gained anything

[Tinwoman2]

I miss most are strong hands. Mine are so weak now & disfigured, they make it hard to do everything I want to do. I've met so many people on FB & e-mail & blogs that truly understand and that is priceless. My hands have sparked a lot of questions from people and I use them to educate them about RA.

[Hidden in reply to Tinwoman2]

that is great you can be so positive I wish you well

[Hidden in reply to Tinwoman2]

Hello. How long have you had RA?

[Hidden in reply to Hidden]

they say about 3 yrs but only had it confirmed in October 2013

[Hidden in reply to Hidden]

Did you have pains that came and went prior to Oct 2013? Or was that the date it showed up in your blood work? Thanks

[Tinwoman2 in reply to Hidden]

Hi Newbie, I was diagnosed @ 2, remission about age 8, back again @ 16 when it attacked my hands & feet (mostly).

[Hidden in reply to Tinwoman2]

Hello Tinwoman.....May I ask how long you've had RA?

[nomoreheels]

Heels!!! Gained a less positive attitude personally because of how I feel now with the treatment I've received so far in the UK. Sorry for being negative but you did ask. Working on it

[Hidden in reply to nomoreheels]

Lol. I'm with you

[Hidden]

I miss having a life and I've gained a lot of weight!!

[fridayfever]

Lost freedom and heels.

Gained weight.

[Hidden in reply to fridayfever]

Hello I just joined this site the day I was diagnosed which was two days ago. I am amazed how many people comment on missing their heels. I would have never known that I will not be able to wear daily. I was hoping the feet problems were temporary bit from reading this blog I see that's an almost exempt thought.

Did you gain weight from a lack of mobility/depression or from your meds?

[nomoreheels in reply to Hidden]

I haven't gained weight but then I never was prone to weight issues before RD. As for depression, felt fed up with it all now & again but never anything as severe as depression. Depression is so misunderstood & when someone has clinical depression as my m-i-l did it's a frightening thing for those closest to you to experience.

[Hidden in reply to nomoreheels]

Thanks! One more question. When people refer to "RD" instead of "RA" another name like rheumatoid disease or does it mean something else?

[nomoreheels in reply to Hidden]

Sorry for the confusion, so used to using it now I forget when we have a newbie! Many of us, & medical professionals, are now preferring to use RD (Rheumatoid Disease) as an umbrella making it non specific as we've been struggling with RA being misunderstood as "just" arthritis. Take a look at this thread, it's interesting reading healthunlocked.com/nras/pos...

[beeckey in reply to Hidden]

hi yes just fats for me.I have had RA for for about 10 years and my feet and ankles are agony feel like i walk with 2 sprained ankles.Have had a few pairs of shoes made for me at hospital fine in winter when wearing long trousers but not for summer but you can get some nice flats but not much support for feet

[aligator]

Being able to plan ahead with certainty that i will be able! And yes heels,dancing & long walks

[Hidden]

I would like to blitz things - go at jobs like a bat out of hell, walk all day in the rain, use energy without thinking about consequences.

On the plus side I'm not such a brat as I was, possibly. I've worked out that lots of things go horribly wrong with lots of lives, that's just how it is. It doesn't take as much as it used to to make me happy.

[marcus6]

Have my freedom back! to do what i like when i like.

[farm123]

Would love to be able to do what I like, when I like and how I like and not suffer afterwards.

I would like to be able to get to a stage of being able to plan ahead and know that that plan will not have to change.

As for gaining anything cannot think of anything positive at the moment but that is probably because I am not under control and cannot remember what normal is.

[Hidden]

I miss so much! Heels, make up, long walks, dancing, fitness classes, having any energy, being slim, never taking even a paracetamol for anything, working, late nights and being a happy soul always ready for a laugh.

I have gained patience, tolerance, awareness of disability rights and issues, and ways to entertain myself using my brain ( cryptic crosswords, reading and researching about health, nutrition, politics, 38 degrees, welfare rights, etc).

And having all the time I need to do what I can, when I want. My OH is amazing, and our collie keeps me company.

So glass nearly half full I suppose?

[Hidden in reply to Hidden]

wonderful response we could all use your positive out look I wish you well

[Marz21]

I miss feeling 'normal' but Ive gained so much - patience, understanding of welfare/employment rights and have found my voice, standing up for myself and others. Determination combats the frustration.

[Hidden in reply to Marz21]

another great response

[jenwight]

I miss some of my friends - lost along the way, I miss being able to walk, go out nights and dance, I miss the old size me, i miss the 3 days each week that I loose through feeling so .... after injecting mtx, I am still working on the positives the only one right now is I found you all

Jen xx

[MarshaM]

Miss planning ahead for trips and events. Find I stay home more now than I did a yr ago. Missed the Fall tennis season w the 3 teams I belong to.

Slowly now gaining back muscle tone lost this in the last 7 mos. Going to hot yoga now 3 times a week which helps my joints gain mobility. Starting to hit some tennis balls recently and swing dancing again, so starting to see some light at the end of this dark tunnel.

[Hidden in reply to MarshaM]

great to keep trying the thing you love

[Annlesley]

I miss the old me, who was so full of energy and slim! On the positive side, I do read lots now (because of lack of mobility) which I love doing and never had the time for. I enjoy the company of my lovely dog who always seems to understand how I am feeling. Have learned how precious each day is. x

[Chappy1]

I miss my work. Used to be a tour guide at Hever Castle which was a fantastic job and I loved it.

[JEM95]

I have found I can do just about everything I used to, albeit in a slightly different way and on good days. I can't plan as much, it's a case of do it when I can.

The thing I miss most is that I won't be able to play tennis anymore!

I have actually lost weight (getting on for 2 stones) since starting MXT - which is a definite positive. I'm just not hungry any more, and things I used to crave (chips!!) don't excite me any more.

[chelleD]

I miss just being able to do what i want to do when i want to. My mind suggests all the things i should do but the body just doesnt agree! i cant plan ahead. But i have gained patience and inner strength. I have found positivity and taking each moment at a time to b the only way to go. RA will NOT beat me

[soootired]

I miss my stamina and energy, working out, running and learning to roller blade, being able to do anything without having to think about "over doing it" - an expression I never had in my vocabulary! Feeling young (well, young ish!) And fit.

I have gained tons more empathy, patience and understanding towards people living with illnesses that are invisible or otherwise.

[julie_warwick]

lots of things , I miss being able to do what I want to without worrying about the after effects , had a lovely family bbq at the weekend and now feel like I've been beaten up ! planning ahead is impossible as I never know how I'm going to feel , running , having a social life , I'm useless in the evening , my memory , it is now that of a goldfish , and to be really shallow , heels , and being slimmer. on the positive side although I miss the people and the money I don't miss getting up for work and enjoy the time at home , I understand the problems people have with illness and disability and I don't take my health for granted and am thankful for " good " days that I wouldn't have given a second thought to .

[Karen77]

I miss wearing heels, weightlifting and running long distances. I've gained an appreciation for what I can do, a greater understanding of the human body, and a greater understanding of the power of nutrition on health (I've actually lost weight). I've learned that it's okay to put myself first and that I need to listen to my body and not push myself beyond my limits (but that testing them now and again can be rewarding!). I've also gained a greater appreciation for my husband, who has been an incredible source of support, love and compassion, and my two young boys, who love me even when I can't play with them or pick them up (my 5-yr old offers to play "slow" tag with me when I tell him I can't run!).

[ellilu58 in reply to Karen77]

That's fantastic that you've got such great family support..bless you all xxx

[ellilu58]

I just miss the life I had - working, planning things, exploring, running, going out, romancing...I was always an active and ambitious person and it's taken me a very long time to adjust to losing everything especially my confidence.

BUT...it's given me time to work on my spirituality. I have time to sit in the field with my two amazing dogs who love me whether I'm well or ill, and listen to the birds, watch the seasons go by, realise how beautiful this world is.

I'm learning to listen to what my body says and if I need to rest, then I rest and have stopped fighting it and stopped feeling guilty for trying to push myself when I just can't. I don't think there are any positives whatsoever to having RA but it does give you time to work on your 'mental' strengths and abilities and learn stuff that I never had time for before - like photography and tarot cards etc!!!

I've also started writing again - always been creative but never had the time - so who knows, there may be a book to come out of all this

The major downside is my newly found addiction to reality TV shows...The Real Housewives just rock.... ha ha.

Stay strong everyone. We all have each other on this wonderful site xxxx

[Hidden in reply to ellilu58]

hi I also love photography but yesterday I dropped my slr braking the camera as it was to heavy for my hands I used to be a psychic consultant on tv and radio but did not see this coming lol

[ellilu58 in reply to Hidden]

Lol....but not really that funny ... I must admit that I do have days when I just can't hold my camera but then I'll use a stand...only problem then if I'm on the ground looking through the lens waiting to get 'that' picture, I can't get up again!! Its a bugger isn't it? xxx

[Louise09]

Everything you all have said already!!!!!!!!

[norfolkjo]

The great Manchester run I did it every year and got slower each time. I am no athlete but loved the achieve ment of it . I watched the coverage and cried my eyes out . Part of me mourns the challenge itgave me . I ccouldn't walk a mile now let alone running six

[norfolkjo]

I missed out the positive . I ran six grt mcr runs with undiagnosed PsA so I must have had sone stamina once xx

[Dolly84]

Heels, dancing, being slim, long walks!

Still awaiting treatment so no positives right now but I'm sure their will be in the future. Lol

[honeybee13]

The girl that used to be me

[honeybee13]

But.....jenny wren who nests in my shed, the tree bumblebees in my bird box, the mason bees in the home I bought last year, honey bees in the hive all bring a big smile to my face. I just watch, listen and enjoy, this makes me forget...for a while

[Prairie]

I miss the old me...the happy healthy planning buying shoes bags fashion spending time with my family socialising with friends...my list goes on

[allanah]

Fell walking but now I try to challenge myself with something small to achieve each day x

[Kittykatxxxxx]

I do nearly everything I used to. But I am in so much pain. I miss not worrying about how I will cope if I have to stand for a long time. I just miss being healthy.

[shazbat]

I miss me !