A positive frame of mind can get you through anything right? Even during a flare?  Maybe. But, boy is it hard to try to keep smiling when you have gone on 2 hours of sleep and can barely sit still because every position stiffens each joint within seconds.  I like to try and give myself a little pep talk daily.  I have fought many different health battles throughout my life, not just AS, and have always somewhat defeated my obstacle.  I do know eventually I will feel some relief, I have accepted that it will never completely go away but I refuse to let it get the best of me.  I must say the challenges do keep me on my toes.  It seems when I let my guard down that is usually when something sneaks up on me.  When I was diagnosed with AS, I had already progressed but figured this was something I could kick.  I knew nothing about AS at that time and figured it was just a few aches and pains.  I had lived with health problems for so long that  my high tolerance of pain could easily get me through this.  It was going to be something else I could take medicine for and the pain would be gone.  I did not account for the medicine not working, flares and the unfortunate side-effects that come along with AS treatments.

Quit Complaining

There have been so many times that I have felt that this is what friends and family have wanted to say to me.  AS’ers you know the “look” you get.  The rolling of the eyes, the scrunch of the nose or raised eyebrow.  The look that says you don’t look sick so stop complaining.  I try my hardest not to “complain” but it has become a challenge all on its own.  You want to be able to share with your support system that you need them yet not be a burden or the outcast.  You begin to avoid others just so you don’t slip and say an extra ouch or mention you may need a little rest.  Without your loved ones you may literally not be able to make it through your day.  How will you walk up or down the stairs, throw in laundry, open the juice, or even be able to get your shirt buttoned?  Your hands, neck, back and knees are in so much pain that you feel helpless.  I think this is one of my biggest frustrations.  I have always been so independent, even with my past medical history, and now with AS, I just have to accept that now I can’t do this on my own.  For those who know me well, know “can’t” is not a word I like to say.  I am still learning that can’t and limits are two different things.  I am learning my limits daily and hope to eventually accept that I do have some.

Walk A Mile In My Shoes

Walk a mile…with AS…yeah right!  You wouldn’t wish your pain on anyone.  It is hard to explain what you feel.  AS’ers we all know exactly how it feels but what I want is for our pain to be accepted.  You finally get an explanation from a doctor and feel welcomed in the AS community that your pain is real, you then go into the “real world” and you are right back to where you were before your diagnosis.  Lost, alone and feeling out of control.  Thankfully, I can’t say this happened to me by all of my family and friends.  I have a few loved ones that have become my biggest supporters.  They are there for me, if for nothing else, but to let me vent and then not judge or tell me to get over it.  They accept that I have Ankylosing Spondylitis and want to learn whatever possible to help me through this journey.  You guys know who you are and I love you for never making me beg or feel like a burden.  You don’t expect a medal for loving and supporting me.  Me, with AS, not me, the person who can always be positive.  You expect nothing in return for your love and support and I can’t stress how lucky I am for having you in my life.  To our family and friends who brush us off let me just say, we will gladly carry this pain for us both so that you will never have to experience walking a mile in our shoes.  I can’t express enough the hurt that I feel when I find out the whispers that have gone on behind my back.  I always end up hearing about them and at this point should not be surprised, but to be honest, it still hurts.  Although you may not support us we will still continue pushing forward.  Our bones and body may be weak, but our souls are not.

Smiling Doesn’t Always Work

AS patients are known to try and “hide” the pain.  We add a little smile, take a few extra deep breaths and add a little more make-up just to try and pretend we feel “normal”.  What about the week before our next treatment when the TNF’s have worn off or you are in the midst of a flare?  What about when the frustration has once again set in because you get your latest labs back and now you are told you have to worry about whether new complications have arrived?  You want to stay happy and smile.  You ask yourself how much more can you possibly take; trying to remember you are only given what you can handle.  I look at my loving husband and beautiful children and remember what keeps me going.  So yes, smiling doesn’t always work but in the end, I will try my hardest to keep positive.  I know there is no cure but that also doesn’t mean I just give up.  I could throw my hands up and say forget it and wilt away.  I am not that person.  I will not allow something to tell me how to live.  It may not seem like it right now but with the proper attitude, a strong support system, and medical care we can all smile again.

Share With Me

AS patients – What helps you stay positive?  Any advice to fellow AS’ers on how to get through those down times?

Support System – Do you have any little things you do to help your loved one with AS keep positive during their darkest times?  Does your loved one seem to “hide” it?  Do you honestly feel burdened at times?

15 Comments

  • Michele says:

    Feel burdened? Are you serious right now? I’ve walked a really long, painful and unanswered path with you and to finally have you have some type of answers as to what has been going on and causing alot of your pains-you must be crazy if think I’ve walked all this way along side of you to just feel burdened by you and your medical situations. In the toughest of times is when you find out who really cares…who is really there and ya know what, if someone is going to feel annoyed, or burdened, or talk about you behind your back…you DON’T need them in your life. Easier said than done I know but it’s true.
    As for darkest times…I try to be a light. A smile at the end of the darkness…whether it’s just a open ear or a well needed smile…hoping to make atleast that moment better, or easier to cope with for you. 1 hour at a time…and if I can make that hour better, then I did my job as a best friend..better yet, as a sister.
    And as for hiding….OF COURSE it’s hidden often (as if I don’t know) but ya know what…you can’t hide stuff from someone who is really there for you and actually cares and loves you. I often pretend I don’t know that you’re hiding it…but I do my dear. I don’t ask questions or pry if I feel you are, I just go with the flow and hide it at that moment too…cause if you try to hide if from me…I have realized that at that moment, you just want it to go away and you don’t want to talk about it so why should we?

  • Mysti says:

    I do feel burdened a lot of the time. Here I am 28 and still not done with school. Each semester is harder than the last. Each day is stiffer the the last. I cancel family trips bacause I don’t think my back can handle the sitting for very long. I feel like I am a burden to my husband and my child. My friends do not understand that I feel like a 98 year old lady that had been in a car wreck; they think it is not as bad as I make it seem. No one truely knows till they walk in your shoes. God forbid anyone need to borrow mine! I could have never imagined this or understood it years ago. When someone doesn’t hurt they just can’t understand even if they tried.

  • Jennifer says:

    I am 33 and was diagnosed with Fibromyalgia about 4 years ago but no matter what meds they put me on it never got much better. I actually got much worse over the past several years and my back, hips, knees, neck and shoulders have become extremly stiff and much more painful than I can explain but I guess now I have found a place where someone actually does understand what it feels like. Anyhow I finally visited a different Rhumetologist recently and she diagnosed me with AS which I had never even heard of. I am in shock that none of the many doctors I have been to has never even spoke of this to me when it fits me exactly. I have been through so much, Physical Therapy, tons of different meds… you name it and here I am now! I am a mess, stiff as can be! My neck feels like it is gonna break…everything is just a MESS! But it was one of the best days of my life to finally go to a doctor and actually here that they knew what was wrong with me and not just blame all these symptons on Fibro!!! She even started me on Humira and says it will help decrease the pain!!! Since when do people celebrate being diagnosed with a chronic disease and thank the doctor that told them they have it a million times with tears in their eyes??? Just to hear that there is something, it has a name and meds to help with it… HOPE… I now have some HOPE that the pain could get better and I am going to hold on to it as tight as I can!!! I am new to this so any advise that anyone has is appreciated. God bless all of us that suffer from AS!

  • admin says:

    Michele-You’re one of the biggest supporters to me in my personal life & AS experience & I’m so grateful & blessed to have you w/me. It can be so hard to have to battle AS & you prove daily that a great support system can make all of the difference. We have known each other for many years & you have stuck by me through good & bad & that means the world to me! xoxo

    Mysti-I can completely relate. I to, feel like I’m overwhelming my husband but he tries to reassure me that is not the case. I can’t tell you how many times I have had to cancel things because my body was so stiff it killed to move an inch! Please know you are not alone in this. We are here for you! An open ear can mean so much!

    Jennifer-I find it so interesting that so many AS patients were misdiagnosed 1st before getting the actual diagnosis. I was just telling my husband that it is amazing how similar so many of our stories are at the beginning. I can’t stress how “happy” I was to get diagnosed also. Years of unexplained pain & suffering. I think 1 of the important things for us as AS patients is we need to have HOPE. Hope that we can find some sort of relief. Maybe not today, maybe not tomorrow, but eventually.

    WISHING YOU ALL A PAIN-FREE DAY!

  • Bill says:

    hello everyone my name is bill, i;m 49 years of age and i have AS. in 1996 i was diagnosed with AS. i have been recieving remicade treatments for a little over a year now. i recieve this every 6 weeks at 1000mgs per treatments. i just found your website just the other day. what i am looking for is a place were i can talk to other people that suffers with AS. my grandpa was the first person i ever knew AS. he was a quite man who never complained. well i am not in that much control. everyone says you can;t give up and my doctors says work yous arms and legs but when i do i pay for it the next day .my AS has fused all my neck joints also my hips i know that i’m not along in this world. but after all my fussing . i want to tell my loving wife sherry, that i love her and i thamk her so much for helping me and loving me even when i am not lovable

    • admin says:

      Bill-I’m so sorry to hear you are in so much pain. Sherry sounds like an amazing woman! Please also remember, you are amazing. Battling AS is a success and strength all its own and you seem to be giving the fight your all.Please know you are never alone and that other AS’ers are always ready to lend an ear. Wishing you a pain-free day!

  • Vic says:

    I have a few in-laws that don’t really understand just what we have to go through on a daily basis. My wife understands some what, as she has been with me through-out the progression of this disease. She has her own medical issues to deal with as well.

    So glad to have found your site.

    • admin says:

      Vic – thank you so much for your support. I am sorry to hear that both you and your wife have to suffer from medical issues. Wishing you a better tomorrow!

  • Jennifer says:

    Since my last message I have been on Humira and it has helped decrease my pain alot. I still have pain of course but now I am less stiff and able to get around better so it is a blessing for sure. I still struggle with fatigue and really tend to wear my self out because I think I can do more now than my body can really handle. Went through a colonoscopy and it was good so no Crohn’s and that is great. So just fighting the AS and Fibro plus multiple side effects for now, I think that is enough! God Bless you all!!!

    • admin says:

      Jennifer – I can relate. I always think I can do more than I can and then by nightfall or the next morning I am just exhausted! I’m also on Humira. I have done 4 injections now. The 2nd one is when I noticed the most but the last 2 have not been as successful. I am hoping my 5th will put me right back on top again. I got a “taste” of energy and I want more!! LOL! Wishing you a better tomorrow!!

  • Jackie says:

    I have had AS for nearly 40 years, as I read your blog I was nodding the whole time! I understand all you are saying, loved the mentionm of make up,close friends know when I am my worse cause -f the makeup, jeweleery everything I can do to hide behind!!

    Stay strong, try to keep smiling xxx

  • Marilyn Kamna says:

    I try to get outside and appreciate nature. When I am too tired or crippled to do anything else (even tapping the keyboard hurt my fingers and the glare of the screen hurt my iritic eyes)… I muster the strength to cook up a curry or a pot of soup*, make a cup of tea and sit/lay back down and grab a big fat cushion grip pen and write (journal) or crayons and draw how I feel-or how I want to feel (art therapy for me), followed by sleep, sleep, sleep 🙂

    * when I’m feeling ‘good’ I try to remember to cook extra and freeze some food ahead so I always have good home cooked food (that follows all my dietary restrictions) on hand for the ‘bad’ days.

    • admin says:

      I like the idea of cooking a little extra and freezing it on the good days! I am definitely going to start doing that! The “bad” days can make it such a struggle to cook.

  • Shelley says:

    I was diagnosed when I was 18 and I am now 27 …
    Sometimes when I’m physically feeling crappy I like to remind myself that in this moment there are worse things in the world than a “little” bit of pain – and then other times I quietly fall apart so as not to burden anyone else …

Leave a Reply to Jennifer Cancel Reply