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?

7 Comments

  • CiMO says:

    hi
    your happy hours are my nightmare hours lol,my pain get worst in that frame, I am more energetic in the night , I like to work and activities even gym at night and sleep the day.
    My daily life hmmm I have AS for more than 10 years , now I’m used to live with pain like something normal and I act like a normal person, people around don’t even figure out that I am sick.
    The thing I regret is I never had a young or teenage life, I start feeling pain at 13 years old and got a late AS diagnostic at 16 year so 3 years of sufferance I was completely unable to move or sleep or nothing, the pain was unimaginable.
    AS affected also my school results because in addition of being constantly absent I lost my ability to focus.

    I have dreams and AS make em hard to release. But I AM NOT GIVING UP.

    Thank you for your post
    Good luck

  • admin says:

    CiMO-I’m so sorry to hear you are in so much pain! It can be so frustrating to have to try & battle AS. I feel I never know what tomorrow is going to bring pain-wise so it has become so difficult to plan my days ahead of time. I’m so glad to hear you are not giving up! That is success against AS all in itself! Wishing you a pain-free day!

  • Josh says:

    I am the same as you. About 6-10pm I’m good. Then I get drowsy but am afraid to go to sleep due to back spasms etc from lying still during sleep. Plus I have nightmares of pain and dying. Mornings are, well. Let’s just say that now that I have lost my job I get out of bed in the afternoons. The painful redness of eyes and pain everywhere are real nice in the mornings. This disease has taken everything from me. My career, my fiancee, you name it. I just pray that it will one day go away.

    • admin says:

      Josh – I am so sorry to hear of your pain. I strongly believe that we need to continue to be “strong”. I have had many days that I loving call, “I’ve had enough” days. I then remember I am not alone in my fight w/AS and that the day will go on. My hope is that this site will comfort you in knowing you are not alone. Wishing you a better tomorrow!

  • Mary says:

    It is a blessing really that I was laid off and then went on disability. It was so difficult to try to work (try–I wasn’t doing a very good job..fatigue,pan+exhaustion). I find myself quite isolated now because I can’t commit to groups because I never know from day to day what my energy level or mobility will be. I’m still befuddled over the fact that grocery shopping can put me down for 2 days. Then other times I can actually do 2-3 errands all in the same day. For me the fatigue will come quickly without mercy–like in the middle of shopping or driving. I find myself spending more and more time home..where I feel safe.

  • asgirl says:

    I am best early/ mid-day. I wake up in pain but if I can have a hot shower, and get all of my pain and hypersomnia meds on board, I start to feel better. I work in a restaurant so if I work the morning or middle of the day shift I feel better. By around 4 in the afternoon, I feel like I need to go to bed, then get another burst around 11pm. I then have trouble getting to sleep as the pain sets in from “resting” I get in the bed and try to get comfortable, and wake up evry little bit as I try to reposition myself.

    • admin says:

      I agree that a hot shower definitely helps! In fact, sometimes my hubby will come in the bathroom to check if I’m okay because I am in there so long just enjoying the shower on my back…ha ha. Wishing you a pain-free day AND night!

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