Support

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?

After being diagnosed with AS I remember thinking in my car on what seemed to be the longest drive home ever, how do I explain this to my loved ones?  I have had health problems all my life but they were things that I COULD explain, not a disease that I knew nothing about.  How do I explain something that I don’t understand myself.  I have 2 small kids, how do I explain to them that mom’s bad days will be days that I need a break or maybe a little extra help from them?  I may not be able to take them to the park to run around, shopping at the mall or go on the green-way for a walk because even a 1/2 mile walk will knock me on my butt for days after.  How do I break down and accept that their real life super hero may not always be so super 100% of the time?  I felt so out of control!  As a person who has always needed to be in control of things, even down to little details, this was going to drive me insane! My doctor stressed how important it was to share the information with my support systems but I just couldn’t grasp that.  Why would I want to put any extra stress on my husband, kids, friends or family?  There are people out there fighting worse health problems than this, who am I to feel helpless? I could do this alone, or, so I thought.

It’s okay to break down

I did indeed tell them I was diagnosed with Ankylosing Spondylitis, I just didn’t let them know how bad it could get some days. Those who know me well, know if I want someone to know something, I will tell them, I just have to do it on my own time, in my own way, not when I necessarily “need” to. I needed to accept the changes in my life before I could share it with anyone else. I would walk into the doctor for my monthly check-up and just break down.  I felt like a basket case. It was the only place I thought I really could, as if I would be shunned from family and friends if I opened up.  I wasn’t good at expressing emotion.  Tears weren’t okay for me. I had always encouraged others to let out their feelings, but for me, personally, I wouldn’t allow it. Growing up with health problems I learned not to express the pain to protect my loved ones, but now being older I realize how much that was for a child and have learned from it. The doctor would tell me my break-downs were a normal stage and it was okay to cry, I just needed to find the courage to do it with my loved ones also.  I would need their support. He said a break-down now and then is good for a person, it shows character…that actually made me laugh for a moment.  He, learning my personality quickly, knew my sarcastic way of thinking and liked to throw in a few remarks here and there.

I am not made of steel

I had to accept I was not made of steel.  I had to be selfish and find support for me.  I needed help and finally accepted I could not face this alone. I was always annoyed by the people who complained about EVERYTHING, I didn’t want to be that person. Little did I realize I was not alone.  There was a select few I decided to share the “real” pain with.  They were people I knew would never judge me.  They would listen with the open ear I needed and wouldn’t tell me I was wrong or even (as petty as it sounds) go behind me to gossip of what a complainer I was being.  I know it sounds silly to think about people who will talk behind your back but at that time that was what was going on in my head, not wanting to be “that” person.  The one everyone avoided because they didn’t want to listen to their complaining.  I can pass on the medical description to my support system but how do I really explain it to them? I searched for a way to tell my loved ones what it felt like to have Ankylosing Spondylitis.  How do I tell them I am sick when I don’t actually “look” sick?  Unfortunately, people sometimes only believe what they can “see”.  It was actually recommended to me by one of the support groups I found online to share an article called the “Spoon Theory”, by Christine Miserandino.  The web link is http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf. It is about a woman that has Lupus and it was her way of explaining what she was going through to a friend.  What it actually “felt” like to be sick. Although I do not have Lupus it explained my days so well that I put it out there for my support system to read.  The explanation in her article was amazing for anyone who has an illness or disability.  It was as if she took a page of a day in my life and wrote it down for all to read.  It stressed how important our “spoons” are daily and how so many “healthy” people take them for granted. I could instantly tell the people in my life who thought I might be a little insane and the ones who genuinely wanted to be there for me.  I have a very good friend who said something to me when we were younger that has stuck with me. In times of obstacles you learn who your true loved ones are. I found this very relevant when I decided to share my “news”.  Was I over thinking their reactions?  Possibly?  I couldn’t shake the feeling though that some just didn’t “get it” and soon I just began to slowly distance myself from them for both of our sakes.  It wasn’t fair to them to have to “listen” to me and it was definitely not fair to me to not have the support I needed to face the newest challenge in my life.  I am human, we all have stress, but I didn’t need any extra stress if I was going to give 110% to this challenge.

The best help of all

Although I still have my days where I feel like a burden to my loved ones because I can’t do the little extra or I need to vent about the yucky feelings, I do know that I am very blessed to have people who are there for me.  Without them the bad days would be even harder to get through.  They don’t even realize the little things they do like just pouring me a glass of juice because I can’t twist the cap, a call/text/email just to say hello, or just showing that time was given to look up information on AS really gives me comfort.  As an AS patient, I wish I could really explain what a “lonely” disease this is to our loved ones. It’s frustrating and confusing.  All I can stress to our loved ones is we DO need your support. A helping hand, an open ear and heart, these things can make our day.

Share with me

Question time.  If you are an AS patient, what are some of the great things your support system can do/does for you?  What has worked?  What has not? Do you prefer to be alone?  I know some days, I must admit, just being left alone is the best “help” I can get. How did you explain Ankylosing Spondylitis to your loved ones?  What reactions did you get? What are your biggest frustrations? What are you most thankful for?

If you are support for a person with AS, what do you do to try to help? What has worked?  What has not? What questions do you have about Ankylosing Spondylitis? What kind of support would you like? How did you feel when you were told your loved one has AS?  What are your biggest frustrations? What are you most thankful for?

As you see, the questions are pretty much the same whether you are a fellow AS’er or their support system.  This is why spreading awareness is so crucial.  We have so many unanswered questions and together, if we get the word out there, we can help us live “with” AS, not “for” it!