Bed and pillows

Are You a Morning or Night Person?

By | Experience | 7 Comments

Is this really even a fair question? This question can haunt a person with AS.  You wake in the morning and take almost 20 minutes to get out of  bed because your body has decided it does not want to cooperate with you today.  Let’s not even mention the fact that you probably have only gotten about 1 hour of restful sleep since you are constantly waking throughout the night in pain.  Night time comes around and you’re tired, you want to sleep, but you cannot.  The hustle and bustle of the day has exhausted you and along with that add on a couple cute swellings, bruises, aches and pains to top off the evening.  The nausea and headache from your most recent treatment has you so uncomfortable that the thought of even trying to get settled for the night is way out of reach.  So how does someone with AS really answer this question?  Well I guess it depends on the moment.

I want to be a morning person

I can’t remember what it was like to wake up in the morning and pop out of bed.  Did I ever pop?  How I would love to open my eyes in the morning and not have the first thought in my head be something negative.  I am extremely thankful I woke up but would really be happy if I didn’t hurt.  I pray that the morning has brought me a pain-free day.  I am already grumpy and I haven’t even lifted my head yet from the pillow but can feel that my body wants to bring adventure for the day.  I like to use the word adventure a lot when it comes to my AS.  I think it adds a little something extra. A little pizazz to the pain. Lol.  I drink my coffee to wake up enough to get the kids off to school and of course grab a bite of something so I can take my meds without getting sick.  So now I want to go to the gym and get in some cardio to keep my lungs and heart nice and strong.  I also want to try to get in a pilates or yoga class to help with my reducing flexibility.  Now, I know in my mind if I do all of these things it will be great but I will also choose to not do anything for the rest of the day then.  Do I have any errands that must be done today?  Do the kids have any activities after school?  I must choose wisely.  So as I sit and think what will I accomplish for my day I start to wonder what it would be like to just do something in the morning without really having to worry about the consequences of the evening or next several days after due to, what would seem to be, a simple decision made for my day.  I can make myself so angry and frustrated once I start.  I get jealous of my husband’s “Mr. Morning” happy attitude.  He gets up with a smile and is off to work within an hour.  For me, I need to allow at least 2-3 hours to get ready.  I might have to wear my hair back that day because my hands are hurting so I can’t hold my straightener.  Make-up, as all ladies know, can be a project.  I have to add a little extra foundation to hide the newest bruises I got from just rolling over in the middle of the night.  I am at the point now that I get excited when my face does not have a bruise so I can go make-up free.  I know that even healthy people have “bad” mornings.  I know it is not just me but I would love to not have to plan my day around my “what ifs”.

Night time, is it really the right time?

So the exhaustion of the day has set in.  Time to relax…ha ha, that was funny fellow AS’ers wasn’t it?  I believe sarcasm makes everything better!  The throbbing feet, hands and spine are almost too much to bear. You look forward to sleep just because the pain is so bad that you know if you are at least asleep you won’t “feel” as bad but you also have yourself prepped for another night of tossing and turning.  You get invited to go out for drinks with friends but are so sore at this point that you have to cancel…again.  So now disappointed and once again frustrated you miss out on something fun.  To be able to put on my dancing shoes and head out for the night would of been amazing but again the choice came and I had to dissect what will happen if I choose to go.

I’ll take Happy Hours 4pm – 7pm

I’m not sure about others, but for me, I seem to have a little burst of energy around this time of day.  Not every day, but I have noticed when I do; it seems to be in this time frame.  It is kind of funny to me that it is during these specific hours as if I am on a “natural” intoxication.  The pain is a little less and the fatigue seems to take a little breather for me.  My husband probably likes it because his dinner is prepared and the kid’s homework is done so he doesn’t have to take care of picking up the slack for me.  He definitely chips in when needed though.  I think about my day thus far and I had already had a next to impossible morning and an extreme bout of fatigue during the early afternoon so I figure that a few hours of possible energy are an amazing blessing.  I know there are many AS patients out there that do not even get that little break per day.

Share with me

AS patients which do you prefer, morning, night or are you an HH fan like me?  Do you get a “break”? What does your routine consist of to help you get a few extra restful zzzz’s?  Any routines to help you get moving in the morning?

For our loved ones out there, how do you feel about our ever-reducing energy?  How much has it affected YOUR daily life?

Hope box

The Birth of United Voices for Ankylosing Spondylitis

By | Experience, General | 7 Comments

WHAT? That is what I have? Really? Those were the first thoughts that went through my head when my Rheumatologist gave me the diagnosis.  What does this mean for my future?  I am young. I can’t possibly have an arthritic condition, but I do, I have Ankylosing Spondylitis.  I had never even heard of this crazy unpronounceable word and now I was diagnosed with it.

Like many AS patients, I have the genetic marker HLA-B27.  My doctor said he could tell by my “personality” almost instantly that I most likely had the gene.  I am strong-willed, short-fused at times, a bit of OCD-like tendencies and quite the perfectionist.  I try to take on the world and really hate being told no or I “can’t” do something.  Those words only make me push harder to prove others wrong.  I now feel I can admit this since AS patients often have some of these traits and I feel “normal” because of it. As I sat in the office, my doctor was explaining the disease but I could hear no words.  I was kind of in shock.  I had never been relieved and scared all in one moment.  Yes, I said relieved.  It answered years of frustrating visits to different doctors being told these symptoms must be in my head.  They don’t relate to each other, they don’t make sense, I don’t “look” sick.  I almost started believing them.  Maybe they were right, maybe I was a little off my rocker.  Within a 5 minute visit to a Rheumy I was given a sense of peace, reassurance that these symptoms were real.  I had never been so thankful for something in my life.  A diagnosis that could try to control me definitely scared the crap out of me but gave me a reason to never doubt myself again.

Now what do I do?  How can I live “with” AS not “for”it?  I wanted to stop it in its tracks.  I was going to be a new case where it just goes away or so I hoped, unrealistic, but as I mentioned I really don’t like being told, I can’t.  I knew I was going to have to learn to slow down a bit and allow the laundry to wait a day, the groceries to last a little longer, teach the kids to help around the house a bit more and limit my all day excursions to only a few hours.  Rest was going to have to become a daily habit.  This was not me.  I was constantly on the go and I liked it that way no matter how exhausted it made me.

My hope for United Voices for Ankylosing Spondylitis

My hope is exactly that, hope.  Hope that patients find comfort and reassurance that they are not alone.  Hope that together, spreading awareness of the disease will educate others to help them understand what AS patients go through.  One of the hardest things at the beginning for me (and sometimes still to this day), was a feeling of loneliness.  I felt nobody got me.  As if I were always complaining or Debbie-downer and that was not normally me but I just didn’t have the energy to fight it. On the “bad” days waking up was even a chore. Trying to get out of bed after a night of restless sleep due to the horrible pain that even the pain medicines couldn’t fix.  I try to stay positive and live by the saying “God only gives problems to people that can handle them”, but as most AS patients know, on those “bad” days, it is really, really hard to keep that smile. The more people I met through online AS groups, in the infusion room and with each visit to the Rheumatologist I found that my complaints were not uncommon.  There were tons out there just as uncomfortable as me. Before meeting fellow AS’ers I was afraid to vent, as if I was doing something wrong. I decided that I may only be one person but by creating UVAS I can bring patients, their family and friends together to find the courage to share their experiences to help others.  I don’t think that the people I have met with AS realize how much they have helped me.  I have learned so much from them just by talking with them.  I am no professional but I do believe it is important to share experience with others.  Every little bit helps.  I constantly tell my children that it is important to learn something new daily, even if it is something small.  A day without new information is a wasted day in my eyes.  If I can help spread awareness to others than I feel I have accomplished my personal goal of UVAS.  Please find the courage to share your experience with us and help spread awareness.

The Disease – Ankylosing Spondylitis

For those new to this disease here is a bit of basic information. Ankylosing spondylitis (pronounced ank-kih-low-sing spon-dill-eye-tiss), or AS, is a form of arthritis that primarily affects the spine, although other joints can become involved. It causes inflammation of the spinal joints that can lead to severe, chronic pain and discomfort. The inflammation can cause the spine to fuse in a fixed, immobile position, lovingly nicknamed bamboo spine.

AS can also cause inflammation, pain and stiffness in other areas of the body such as the shoulders, hips, ribs, heels and small joints of the hands and feet. Sometimes the eyes can become involved and rarely, the lungs and heart can be affected.  In the end, for me at least, AS is pain that brings you to the point of trying anything to have some relief and feel better for longer than a day.