Archive for the Week 07: Sleep Category

Sleep, Friendships, Social Gatherings And A.S. By Meloni

Posted in The Blogs By Meloni, Week 07: Sleep, Week 08: Friendships, Week 09: Social Outings on September 5, 2011 by Cookie Has A.S.

So, I’m literally cheating right now.

I’m part of an ankylosing spondylitis blog group

and I’m several blogs behind

and yep-I’m combining them to catch up!

Because I literally been in a BLOG FOG!

So the first item is sleep-which I now think should’ve been a 4-letter word! Those of us who are in pain 24-7 don’t really “sleep”. Have you ever woke from your sound sleep because you’re hurting? Maybe you moved and something all the sudden felt like a KNIFE stabbed you? Well, I have and do all the time. My eye even hurts and wakes me up. MY EYE THAT’S CLOSED! So, sleep is not something we “really” do. We try and rest every now and then, and even that’s hard! OK-so what happens when we need some sleep or have a lack of sleep? We get ill! Not sick ill, but cranky! Hence the reason we’re sometimes a bit short and snappy. But, folks don’t realize that. They just think we’re rude or something. You try going without sleep for days, weeks, months, YEARS!

Friendships–sometimes it’s just best to not have them. They don’t really understand. So, my “close” friends are few. I have those few (very few) that I can call on the way home from the doctor and cry or share how I’m feeling and they listen. They do try to understand, but I know you can’t understand “things” that you haven’t gone through yourself. I am thankful for those “few” that I have and love them dearly! DW and T–I love ya’ll sooo! As for “couple friends”–you know the married couples that you and your spouse do “stuff” with. Hmm…we have a few of those, I wouldn’t say close though—but my outings are few.

Which leads right to, social outings! We LOVE doing things and going out. But, my time is short. I can’t do what I could before AS. I’m finding “outings” have to now be timed around my infusion. Like the week or two after that I can actually function–not a normal functioning–but function. Because if something comes up when I’m in week 4…forget it! All I’m thinking about is how much I need that infusion and could it hurry and get here. So, for the most part, my outings will be focused on what my kids are doing. I have to pick and chose what I do and know that some of the things I do chose are going to put me down for a day! Oh, and that’s not sleeping, it’s a day of rest. I call them time-outs!

So, here’s the deal with sleep, friendships and social outings–are you going to be all upset when I cancel because of how bad I’m doing at that hour before something is planned? Then it’s not worth you being my friend, because it’s going to happen. Just recently my sister wanted to take me to lunch for my birthday–I called her 30 min before we were supposed to meet to let her know, I’m not feeling good and can we do it another day?….she understands-would you? Most don’t understand. They all the sudden get the “oh, she always cancels attitude” and then they stop inviting. We’ll that’s not what a “true” friend does. A “true” friend tries to gather all the knowledge they can on ankylosing spondylitis so they can understand a little of what I go through.

Do you know someone with a chronic disease? What have you done for them? Do you even try? Have you ever said- hey “you’re feeling bad today?, we’ll how about I bring over some dinner”. Maybe clean their house. Or pick up their children? Send a card letting them know you’re thinking of them. Or simply, I’ll be praying for you and I’m sorry. Most acquaintances simply stop “acquainting”. They can’t understand nor do they want to try, so it’s just best to not be “friends”.

I’ve learned a LOT about how I should’ve acted all through my life–because I’ve always known people with chronic illnesses. We are all just so busy with our own lives, it’s hard to really stop and all the sudden walk very slowly beside someone with a “disease”. There are only a few people who will slow down for a disease ridden friend. If you’ve read this far, maybe you are that person–I’m not saying come clean my house or bring me some food–hahaha But, you know others–people who are in need. Can you help them today? Is there one little thing that you could slow down and do for them today?

AS has my body, but NOT me!


I Don’t Sleep Anymore, I Wish I Could By Kate

Posted in The Blogs By Kate, Week 07: Sleep on August 22, 2011 by Cookie Has A.S.

 I don’t sleep anymore. I wish I could.
You would think it was from bad thoughts invading my head-
I don’t sleep anymore. I wish I could.
You would think it was from pain-

I don’t sleep anymore. I wish I could.
I lie in bed half awake, half dreaming about the day.
I don’t sleep anymore. I wish I could.
I wake after two hours in frustration, wide awake with no hope of falling back asleep.

I don’t sleep anymore. I wish I could.
Sometimes the pain is too much and I can’t breathe.
I climb out of my bed in agony in search of a pain pill.
I don’t sleep anymore. You know I wish I could.
I am sad and the emotions are just too much.
so I lie there crying wondering if this will be my life forever?

I don’t sleep anymore. I wish I could.
My brain doesn’t want to shut off.
My body hurts so bad I can’t breathe.
I lie there in tears thinking it has to get better. It has to! This pain can’t last forever!
I don’t sleep anymore. I wish I could.
It gets so lonely when you are the only one awake in the wee hours of the night or morning.
It gets old, very quickly.
The tears get tiring very quickly.
The nights I am up and pain is not distracting me are actually worse because I am alone in my thoughts.
I don’t sleep anymore. God I wish I could.

A Night In The Life Of Chronic Pain And Gratitude By Jennifer

Posted in The Blogs By Jennifer, Week 07: Sleep on August 22, 2011 by Cookie Has A.S.

I go to bed with a heating pad and a special pillow and I close my tired eyes and try to quiet my mind which is running in a way I no longer can.

The pain in my chest keeps me awake and my cheeks are damp from knowing she is nearing the end of her time with us.

I toss and turn but even that is altered now — it’s a process to turn over and there’s pain if I lay on my back and pain if I lay on my hips, and if I lay on my side my ribs ache.

I give up for now, and push aside the covers, reaching for my glasses on my bedside table, and quietly get into a sitting position and then stand and grab a sweatshirt and slip out of the bedroom as silently as I can, trying not to wake my husband.

I put on the tea kettle and flip the knob to high and watch as the burner glows red in the dark kitchen. In the dark night.

Opening the microwave, I ball up a second heating pad and place it on the rotating glass plate and press “3.” The appliance hums to life loudly in our silent home and I hope, like so many previous nights, that I am not disturbing the rest of the three gifts God has given me — my husband Jonathan, and our daughters who sleep with well-loved bunnies and dollies in a shared bedroom lit by soft nightlight.

I pad over to my recliner and sit with my now-hot heating pad placed against my chest, where it feels like a heart attack is brewing right along with my tea. Costochondritis, inflammation of the chest wall, is just one of my symptoms with Ankylosing Spondylitis.

I rock and sip and wait for medication to kick in, and remember when my oldest was only 4 and she would find me balled up on the floor and tell me, “Medicine takes a long time to kick in, Sweetheart, but it will kick in.” She would squat down and stroke my hair and sing me a little song.

My family has lived with chronic pain for several years now. It has come in different forms — first, after a miscarriage, as pelvic pain, and then as spine and joint pain.

It wasn’t invited, but it’s here nonetheless, and although we didn’t ask it to come, we have learned our way around it. We have learned, every single one of us, how to take better care of each other. We have learned, from 6’2″ Jonathan to 44″ Natalie Kate, how to be more compassionate.

We have learned how to love better and how to be more patient and we have absolutely learned to be flexible with plans, as I don’t know from one day to the next how I will be feeling. Because of that unpredictability we’ve also learned how to seize the day. Mama can walk without a limp today? Let’s take a family stroll!

I sit and rock and sip and wait for the heat and the medicine to soak in and through me and I wipe away a tear that represents the grief I feel over Sara’s life ending soon. More tears swell up and pool in my eyes that represent this profound love I have for my family and friends and life itself, and my gratitude that I am here to experience all of this, the good and the bad.

Eventually I head back for a second try at sleep. I slip back under the covers, fold my glasses back onto my bedside table, adjust myself with two heating pads and a special pillow, and finally drift off to sleep with my chest hurting and my heart aching.

I don’t enjoy the pain, and I resent how it effects our family (especially when I see the hurt and worry in my daughters’ eyes), but I relish these sweet gifts it has taught me:

Live this life you’ve been given. It’s precious!

Oh So Bad I Ache! Oh My God, I’m Still Awake!!! By Dana

Posted in The Blogs By Dana, Week 07: Sleep on August 22, 2011 by Cookie Has A.S.

OK, Now it’s time for the Sleep topic for the MOWer’s blog carnival. I hope you learn a lot from this topic. I think this is an important topic for others to read about those with chronic pain/illness. It is, sadly, something that affects all of us.

What I find so interesting is that when our son was born 8 months ago, the question that was asked the most was, “Are you getting any sleep?” I always had to laugh. No, I wasn’t getting any sleep, but it wasn’t because of my sweet baby boy. He was amazing! He slept through the night since the day he left the hospital. I couldn’t believe it!

The reason it’s so interesting to me is that this seems to be the only time anyone seems to care if you are sleeping through the night, if you have a new baby. No one asks you if you have a chronic illness, especially chronic pain, if you have been able to sleep (unless the other person is also experiencing chronic pain/illness and also not sleeping). Why don’t people think to ask that question? Why is it that we would only not sleep if we have a baby? It was actually torture for me to have a baby that slept through the night from the beginning. I kept thinking, “How perfect; I’ll have someone to stay up with me through the night, and we can keep each other company. I will take care of my baby, and the baby will help keep my mind off my pain.” Well, that is what I get for trying to think ahead and plan…

I have tried it all…new mattress, flip/turn the mattress, only use the bedroom for 2 things (sex and sleep), meditate before bed, take a soothing bath before heading to sleep, Sleepytime tea, wind down and read just before bed, journaling before closing my eyes, using a TENS unit while sleeping, pain meds, sleeping meds, heat/cold on painful areas, different positions, prayer, and many more…


Lately it has been much, much worse. I stay on the couch, and stay online until the wee hours of the morning while my hubby and dog go to bed. My son also sleeps so soundly. He sometimes loses his pacifier, his fafie. He might whine a little. I smile, and as quickly as I can enter his room to soothe him with his favorite fafie I place it back into his soft little mouth. Thank goodness I was awake. 


My hubby gets so aggravated. He doesn’t really like to be awakened from a deep sleep, and I always get into bed around two or three a.m. He always thinks that I have just been up watching t.v. and goofing around. It is so hard for him to understand that I just can’t sleep. If I try to go to sleep when he does, I stare at nothingness. I watch the clock change from 11 to 12 to 1 to 2 to 3 to 4 to 5.  By then, I do finally doze off.  Then, he is waking up and getting ready for work. Then, my son wakes up and is ready for breakfast. Everyone is well-rested and ready to face the day. I on the other hand am even more tired than the day before…

Each day I am even more and more tired…

Because I am more tired, I am more and more fatigued..

I need to be able to place my head on a soft pillow and sleep…

I need to be able to find a position to sleep in on a good firm mattress and drift away to dreamland…

I need to actually have a dream again…

I don’t remember the last time I had a dream…

I do remember the last time I pulled an all-nighter…last night…

I forgot what it’s like to know the difference between night and day…to wake up in the morning refreshed and go to bed at the end of the day…

I want to be able to say to all the people with chronic pain/illness, “How well did you sleep last night?” instead of “How did you sleep last night?”…because I want to ask a question expecting a positive outcome rather than to ask it expecting a negative outcome…

For those of you who don’t have a problem with sleep, I have to tell you, it is the worst thing to experience. To just lay in bed and stare at a dark ceiling is miserable. The fact that the pain is keeping you up to begin with is bad, but that you are so fatigued and would give anything to just fall asleep is a different kind of pain. I lay there and want to sleep so badly that it actually hurts!!!! I pray to God to help me to drift off to sleep. I try teas, meditation, hot baths, music, medication, EVERYTHING!!!! Nothing works…And to know that if I could just get some sleep, I would feel a little better.

Sometimes if my hubby wakes in the night, and asks if I am still up, I answer yes, and keep on talking. I am just so happy that someone is up with me. It isn’t long-lasting, however. He soon falls asleep as I’m still in the middle of a story. The next day, he doesn’t even remember ever talking to me.  When I tell him about it, he gets mad that I interrupted his sleep. He doesn’t even remember!!! He isn’t tired, how did that interrupt HIS sleep?  Oh, well.

The biggest thing that I want to get across is what it feels like, why I can’t sleep, why many of us can’t sleep.  This is how it is for me:

The pain in so bad, I flip to my back instead.
On my back, my knees begin to ache,
Oh my God, I am still awake!
My feet, my feet, I can’t feel my feet!
They Start out numb, but then I start to feel HEAT!
My feet hurt so bad,
I feel like I could actually go mad!!!
Please God, when will it pass?
I want to sleep!!!
The pain is beginning to make me weep.
Now crying hard.
I change positions, but I have to guard
my hip, my shoulder and elbow too.
Oh God, what do I do?
The pain is now so intense,
and sleep just doesn’t make any sense.
How do I sleep in a bed
that feels like rocks underneath my head?
Will I ever dream again
when my pain is so deep within?
It feels like my marrow is fighting back.
I feel like I could break if I hit the sack.
Burning, pounding, aching, stabbing,
Bruising, biting, pinching; all
of it I’m having!!!
It’s funny weird;
Each night, having the same things feared,
I want to be able to dream,
but need sleep, so it seems,
to be able to even have a dream again.
So when I think about where I’ve been,
I dream that I will someday have no pain,
so I can in fact dream again, all the same.
As for right now, when I lay in bed,
the pain is so bad, I often wish I was dead.

Sleep By Jackie

Posted in The Blogs By Jackie, Week 07: Sleep on August 22, 2011 by Cookie Has A.S.
Sleep, something there never seems to be enough of. Sleeping can be difficult for us as the pain can hinder peaceful sleep, or getting your aching joints into a comfortable position for any length of time, or exhaustion allows you to sleep – for a while. We have become used to the wee small hours when everyone else seems to be asleep but we have woken up with pain, or discomfort.
Do you lie there and hope sleep comes back, or do you get up and try to stretch, move, anything to help aid a degree of comfort so that when you go back to bed, so you might sleep? If you have someone else there, you have the added pressure of trying not to wake them too, if you are working you have the stress of knowing how wrung out you will feel the next day while trying to carry out your duties well.
Then there is the fatigue, it is such a debilitation part of AS, but when combined with lack of sleep can make it impossible to carry on – to do your job, to have a social life. I have to say that one of the most enjoyable parts of not working anymore is that when I wake up at 2 or 3 in the morning – it doesn’t matter!! I can get up – make a cuppa – settle with my book – with no worry. I remember lying awake, especially on a Sunday night, and watching the hours go by knowing I needed to sleep, and sometimes with no sleep, sometimes with an hour or 2, because of course the more you worry about it, the more difficult it becomes, and then having to try and function at work.….
Most people go through periods in their lives when they find sleep difficult, but for us, and others like us when fatigue is part to the disease; it is difficult to describe the intense bone weariness, the feeling of walking through treacle, both physically and mentally. Oh I am so jealous of those people who can cat nap, I have never ever been able to do that either, but I am expert at staying awake all night long……..

Sleepless In Texas By Cookie

Posted in The Blogs By Cookie, Week 07: Sleep on August 22, 2011 by Cookie Has A.S.


Those seven simple words put into my Internet search brings up about 5,090,000 pages of important information telling us why sleep is important to your health. I have spent years struggling to get a good nights sleep, most of the time the pain was too much to get comfortable to get a full nights sleep. As my Ankylosing Spondylitis progressed so did the amount of pain I endured. It became impossible for me to deal with the pain of lying down on the bed and finding a comfortable way to sleep. Every doctor visit for more years than I can count ended up with me in tears and frustrated and angry. I would always ask for something to help me sleep. The response was always, well it is short-term use only and is addicting so there is really no need to begin it. You will need to find a happy medium that will bring you relief. I became desperate, I drank, and I took over the counter drugs having no clue if they would mix with my prescription drugs. I always meekly listened and followed my doctor’s advice as society and our mothers taught us to. I was only able to become my own advocate out of pure desperation. I was at my pain management doctor, for my once every three-month visit. How are you, where do you hurt, how are you sleeping, what is your pain level and here are your prescriptions and see you in three months. I finally got the courage borne of desperation to question why I couldn’t have a prescribed sleep aid to help me. The response was I (doctor) am afraid you will become addicted to sleeping aids, and we will have to deal with your addictions. I said you are f…, well let me rephrase that, I said you are kidding. I have been given every narcotic drug and procedure you can imagine with no thought of consequences. I mean really? You are afraid I will become addicted to sleeping pills, so what if I do? I have to sleep every night till the day I die. I told him you tell me how important it is to my health and well-being to sleep, yet you won’t help me. I told him that I need to sleep, and I can’t because of the pain. It hurts to lie down, it hurts to have the covers on me, and it hurts to turn over. I finally convinced him, that even if I did become dependant on the sleep aids, it would be worth it because of the benefits of sleep. I have been prescribed the smallest dose of  ambien for the past 4 years and I take a half a dose nightly

I do not have a sleeping problem; I can fall asleep at the drop of a hat. My sleeping dilemma is caused by pain, pain in every fiber of my body and I am not able to lie down in the bed, without crying out in pain. I am thankful that my doctor was willing to listen to my first attempt to be my own medical advocate, and I am thankful I loved my self enough to do so. What that day taught me, was I do have the right to challenge my doctor, I do have the right to present my side of the story, showing the pro and cons. Sleeping is as important to health as are eating properly and getting proper exercise. It is actually damaging to your health to work too hard and not get enough rest. Although most of us have heard we need eight hours of sleep a night to maintain good health, we are seldom reminded that quality of sleep is just as important as quantity. Poor quality sleep can lead to poorer performance at work, accidents, and mood swings. Health problems also begin to develop if poor quality sleep persists for a number of days or weeks.

Remember you have to be your own best friend, both physically, emotionally and in your health care program because you have the most to gain or lose.

I pray each sunset brings you peace and comfort and each new sunrise brings you hope.

Sleep? What’s That Then? By Ricky

Posted in The Blogs By Ricky, Week 07: Sleep on August 22, 2011 by Cookie Has A.S.

Everyone at some point experiences sleepless nights. Whether it be stress from work, crying babies at 3am, or that cough/cold that just won’t let up. This is all part and parcel of being a grown up, is it not? However; true insomnia is a different ‘kettle of fish’. Depending on which stats you believe, anything from 50% – 90% of people suffering with chronic pain say they suffer with sleep problems. Often waking up feeling like they haven’t even slept at all. This is certainly something I have experienced personally.

Fragmented and disturbed sleep interferes with your normal sleep cycle. During a normal nights sleep you go through light sleep, deep sleep and REM (rapid eye movement) sleep. It is this deep sleep and REM sleep that makes you feel rested and refreshed in the morning. This cycle is repeated 3-5 times a night. So it stands to reason that the more of cycles that are disturbed, or the less cycles you complete, the more tired you will feel.

I think it would be fair to say that chronic pain sufferers experience this more than your average person. The obvious factors for this such as acute pain flares, chronic pain and discomfort, muscle spasms, neuropathy / nerve pain all make it near impossible to to drop off to sleep at times and increases the likelihood the the suffer may wake up once asleep. Other factors such as medications and associated health problems only compound this problem more. Of course tiredness can have the obvious effects on mood, concentration and motor abilities. Prolonged sleeplessness however, can also make pain worse. Adding to the daily challenges of chronic pain sufferers. People who have chronic pain usually suffer with chronic fatigue. In the case of Ankylosing Spondylitis (AS) its the repetitive inflammatory processes that happen that contribute to this. A lack of restful sleep only increases the level of fatigue in which chronic pain sufferers experience. Yet another one of the vicious cycles which seem to be prevalent in AS and all arthritic conditions.

There are many documented management strategy’s for insomnia. Just ‘google’ it and you will soon see. But I’d like to here from you. What are your experiences? How do you manage it? Medication? Exercise? Or do you have some secret technique you’d be willing to share? For those of us that experience this we know the negative side of insomnia. So I’m inviting you to share any positive experiences you may have had, and any advice you may have for people that may be experiencing this for the first time.