Life changing for the worst

Pinpointed everytime I eat red meat I have a flare up. This disease is stripping me of everything I love doing in life.

Socialising - can't have a drink

Meals out - can't eat sirloin steal my favourite

Getting dressed up - can't wear high heels

Spending days out with the grandchildren - come back knackered

General housework - my hands hurt

So basically all I'm left with is a red face(side affect off methotrexate) no eyebrows, bloated off the steroids look like a frump when I do drag myself out of the house and then everyone saying stay positive it's not the end of the world at least it's not cancer. I'm off to America in November one of my bucket lists. I play poker so had this holiday to Vegas booked for over a year now. To tell the truth I am a now absolutely dreading it I'm panicking in case I'm ill over there and spoil it for my husband and 2 of our friends who we are going with. This disease has reduced me to a withering wreck of a person I used to be who I'm finding hard to live with

21 Replies

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  • Hey you!

    I could waffle on about how a person doesn't need to drink to have fun, that you will learn to have other favourite foods when eating out, that the line 'well at least it isn't cancer!' will loose its scream factor when delivered by another well meaning soul who just hasn't a clue (bless them)... But the bottom line is some times RA is sh1t... The secret of life is don't wallow in it or head out into the really runny stuff but get yourself to a pontoon and rest there until you've the strength to head for shore once again... true friends and loving family members are a great asset and will even pull you onto the pontoon or help you find the shore if they can. In the meantime try to relax, rest, have a bloody good cry if needs be and find one thing that offers some respite (mine is being in the garden... bare feet on cool grass is soooo soothing!).

    All the best (fingers crossed that you come back from Vegas richer than when you went)

    Ali

  • Thx for your reply Ali. Just reading your post has made me feel better. In fact I did exactly what you said I went out into the garden in my bare feet and your right it felt great. I don't think I'm in Daniel Negranus league in poker but I'm definitely going to give it my best shot. Much appreciation for your kind words x

  • These people who say its not cancer don't have a bloody clue do they. \We take cancer drugs to help our disease as well. Keep your chin up darling and tell those well meaning people to go and get stuffed and come back when they have looked into what is wrong with you and then say it isn't cancer. Cancer you either get cured or you die,we don't die with this.xxxx

  • Thx for your reply Sylvi. I think all my pent up emotions just came flooding out today. Had a month of excruciating pain which has totally wiped me out. Rheumatologist has upped my methotrexate so starting to feel a bit better. people like yourself who offer kind words and support and know exactly what your going through keep me going thx so much x

  • Yes, and there is a lot more public awareness, understanding and support for people with cancer compared to RA. Don't forget even next doors cat has RA.!!!!

    We should not be put into the situation of being grateful of not having cancer or compared to people who have. What RA does to our bodies and mind should be recognised in its own right.

    xx

  • Actually my life is normal I wear high heeled shoes in celebration of being in remission, and have the occasional drink on LEF. I'm not defined by a disease but am me; I live with it not despite of it.

    I actually I do think I'm lucky this is a rotten disease but can be treated and treated well. I really don't even think about it much, just take that triangular pill each night and be aware of some risks. Last year I had Pulmonary Embolisms a life threatening condition that meant a few weeks in hospital so every day is a bonus and I'm not going to waste them by worrying about things I can't change.

    So if I were you I'd it get my eyebrows tattooed, wear clinique anti redness face cream and buy some gripper knickers from M&S. Then have a glass of low alcohol wine (Sainsburys do some good ones) and get some sparkly ballet pumps now all the rage and make the most of Vegus. After all they have doctors in America and the climate will no doubt ease the aches and pains.

  • What are gripper knickers?

  • Sort of spandex, hold in that which pops out, lift up that that sags and generally make it hard to breathe. But gives a great outline. !! lol xxx

  • I love spandex !!

  • Thx for your reply Medway. I'm loving your positive attitude. All my pent up emotions have just come flooding out today after a crippling 4 weeks of excruciating pain. Rheumatologist has upped my methotrexate so starting to feel a bit better and hopefully it will continue. I do try my hardest not to let it get me down and I do have a strong pain threshold but there's only so much a person can take. But always the trooper I will soldier on and combat this bloody disease just like yourself and all the other sufferers on this blog. Much appreciation for your kind words and support x

  • Hello Kazwilks,

    I totally understand how you feel. For the last 6 months I feel like I'm standing on that dark slippery slope and it's scary. Then I remind myself of the good things in my life.

    I have watched my children grow into two amazing young adults. I feel lucky and thankful that my kids where 17 & 21 when I developed RA.

    Hubby and I can't canoe, paddle boat , etc anymore. So we bought a used power boat. I love being on the water.

    I had one more year of schooling to recieve my wset deploma. My hubby and I could of travelled anywhere in the world making vast amount of income. I now can not drink wine or spirits....---

    RA has forced me to re evaluate my life. I love my family. Travelling the world with an expence accout would of been amazing, but in reality, I am a homebody. I would miss the BC coast and my garden.

    My life has changed, I just have to learn to adjust to it. I am known to say,

    " RA doesn't define me. I think of my RA as a piece of dog poo that I stept on and no matter how hard I try, I can't seem to wipe it off my shoe" So now I have to adjust to it.

    I hope you too can find your way.

    Peace and love to you

    Sue

  • Thx for your reply sue. I don't talk about living with RA much especially not to my husband who I think is struggling to come to terms with it. He just sees me as me because physically I don't look any different. I try to hide how much pain I'm actually in and end up overdoing a lot of things I shouldn't be doing. It does help having someone like yourself who knows exactly what your going through. I think I have bottled a lot of my emotions up trying to stay strong and they just come pouring out today. Thx for listening and caring X X

  • Looking back, if I were to describe my personality for the last 2 years since diagnosis I would say,

    "Cleopatra, Queen of Denial" I would bottle up my emotions, suck up the pain and carry on. I have always had a positive and strong outlook on life.

    "suck it up Sue" was my motto as RA is nothing compared to the horrific tragedies my hubby and I stuffered in our younger years.

    I've been off work now for 6 months. I am alone as my hubby and son are working, and my daughter is in College. I have been forced to re evaluated my life. Boy oh boy, I am glad I did. It is so emotionally "freeing" to say "no I can't do that....I can do this though..."

    I don't want to educate people on RA, if they care about me they will google it. I don't want to hear their advice on how to cure RA. I'm done with being polite and crying inside when friends and family say something like, " you look fine, lets go shopping...." or be acused of "Pulling the RA card" just to get out of going somewhere.

    Please feel free to pour out your emotions on line. We all need to connect to people who are traveling the same path in life.

    Take care

    Sue

  • Hi kazwilks

    Yep, RA sucks, and I've felt - and sometimes feel - just as you do.

    Now 64, I haven't been able to wear high heels since it all started at age 24. Since about 35 could wear only sensible lace ups and now only orthotic footwear.

    I can't even lift up my (under 3yr old) grandchildren, and can't get down on the floor to play with them - in fact I couldn't get down on the floor to play with my own children 35 years ago.

    I can't do any housework other than dusting as have not enough grip in my hands or strength in my arms.

    I can't put on my own socks and shoes.

    I don't eat steak when out - as it is embarrassing having to get someone to cut it for me.

    My husband is becoming my carer, we can't do all the things we'd like to do now we're retired. I can walk only a short distance on level ground - I'll never be able to walk along a beach again, or a coastal path, or over a moor, or explore deep into a wood.

    I could go on . . and on . .

    I don't say this to make you feel bad, but to show how easy it is to list all the bad things. It doesn't make you feel better. And it doesn't make anyone else feel better. They feel sorry for you, but they can't make things right. So they feel bad too.

    I got a wake up call years ago when my daughter was at primary school. They had been asked to write about "My Mum". My daughter started at the top of the page with "My Mum has arthritis". . .

    From that day I determined to try my best not to let RA define me.

    It's hard. I've had a difficult couple of years - but when I find myself on the slippery slope of "woe is me" I try my best to get back up.

    It's not easy, but you can do it - put on your gripper pants and sparkly pumps and hit Vegas like you mean it - go girl, have fun (and if you win more than you can handle let us know - we're here to help! ) 😉xxx

  • Thx for the much appreciated reply. I could break down and cry for you going through this at such a young age. I'm 54 on Thursday and feel like I've being given a raw deal but you heart rending story has put things into perspective for me. I will appreciate the things I still can do and try and fight through the pain and just get on with my life now the best I can. Sending you big hugs for your support and motivating words x

  • Have a great birthday kazwilks , you can and will have really bad days with RA , but stay close to your dreams , as these dreams will keep you going , each day will bring new challenges , grow into each day , it's not easy , and hey we can rant and rave about what this cruel condition can do to our dreams and aspirations . Go to America and win your game , you are worth it ! Sending you best wishers for a great birthday .

  • Thx for the reply flugelgirl and the birthday wishes. I don't know what your thoughts are but I feel RA is not recognised as a life changing illness. I really want to shout it from the hilltops to make people more aware of what we are going through I'm going to do some research on why it is not been made more publically aware of all the hardships and life changing difficulties people are facing living with this disease. Anyway on a brighter note have felt OK today thx for your support and wish you well X X

  • I love your attitude npkd what a positive post .

  • Great Ali H. I couldn't have put it better myself. we all get fed up with it at times but feeling sorry for ourselves doesn't improve things. There are ways of getting round everything and in time you will discover those ways. I have all the things you mention and I have a wonderful life. I have a beautiful family, great friends, a nice home and I am alive. Be positive and you will see that it isn't all doom and gloom. Sorry to be harsh but that is the only way to deal with this disease. I wish you all the best.x

  • aww..you aren't alone! I go to a place called Bullhead City AZ./ Laughlin NV. they are near Vegas but on the Colorado River! That's so cute it is on your bucket list...so much to see here in the states! I'm saying a prayer for you now!

    I am also keeping close track of my food etc...I've noticed soy sauce really makes me hurt and now coming to the sad realization that alcohol does also :((( I will start paying attention to the red meat :(

  • Thx for your reply lamrosey. I wasn't aware that certain foods can trigger flare ups. My Sunday roast would always be beef or going out for dinner would be sirloin steak. The morning after I would be agony with swollen joints and a burning pain which would last for at least 2 days. Hence I now don't eat red meat which is a pain I find chicken or pork really boring lol. Anyway take care and thx for your support and caring x

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