Tag Archives: sleep deprivation

The real cost of being sick

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 There is so much more to chronic illness expenses than doctors appointments, tests, and prescriptions. Those are the more obvious expenses. Those are costs that you can control to a certain extent with the type of health insurance  you have. These are some of the less obvious costs…

Lets start with diet.  I don’t mean the kind of diet you go on when you want to lose weight. I mean the kind of diet that completely changes how you eat. I won’t say that I avoid trigger foods altogether–I am human. I know [emotional? you just said “eating” which is good!] eating it is not the best idea, but sometimes it’s emotional therapy.

Many times the prescriptions that people with chronic illness take can cause digestion and gastrointestinal  issues as well. What that means for me is I can not rely on a good quality multivitamin to catch any lapse in diet. A good quality highly absorbable multivitamin can cost fifteen dollars or more per month.

The reality is fresh fruits and vegetables cost almost twice as much as canned or frozen fruit. Why is this an issue? Well this ties into the digestion issues. Many people with chronic illness cannot process the additives, extra sugar, processed sugar, and preservatives as well. This makes canned and frozen fruits not the best choice. I am not saying I never get these but its not my preferred choice, and I always have more issues after eating these foods.  I am lucky in my diet the only issues I have are preservatives, additives, lactose and corn.  This still makes it difficult, it could be so much worse.

While my family normally tend to be fairly healthy eating to begin with even before I got sick, it’s not even a choice now. It is how we have to live.  This is not necessarily a bad thing, just another hidden cost people don’t think about. I did do about six weeks of juicing with fresh fruits and veggies. It worked really well, and I did feel better. It cost me  about forty dollars a week. When it came down to it, I had to start focusing on making sure my family had enough groceries for the week and not just enough to juice.  Its great to juice or make smoothies, but I still have to feed my family.

Next we have what I like to call my toolbox. A list of things that you can do to help alleviate some of the chronic pain that goes along with chronic illness. Oh just take an Epsom salt bath every night. I use Icy hot and love it. Pick up some Tiger Balm. Pain patches, supplements, and exercise are what helps me.  It is one thing to say that but here is the hidden cost.  To be effective you need to use at least a cup of Epsom salt per bath, while recommended amount is two. At one point in order to take a just plain Epsom salt bath every night I was paying roughly fifteen dollars for salt each week.  This is just plain epsom salts. This was not for the ones that have added benefits of lavender or menthol or eucalyptus, rosemary or ginger added to them.  Not to mention its not like I can just jump into the bath tub any old time I need to.

Then you also pick up a variation of rubs, creams, and ointments. Each of these run from as cheap as five dollars up to twenty  bucks each. Since we often use them multiple times daily, we might get a week or two out of a tube or bottle–if we are lucky. Pain patches, however wonderful they are, are one short use and they are done. Five dollars for five patches that if you stretch it can last you four days. It gets to a point that you can easily be spending fifty to sixty dollars a month on these kinds of things.

There are some more natural remedies that you can take to help bolster the prescriptions that often you have to take. I have gone off a lot of prescription medications and have gotten down to my bare essentials so to speak. My bare essential prescription cost is about  [$150] {or} [One hundred fifty] every three months.  It was almost that a month at one point in time.

It is easy to say “go pick up a supplement.” Looking at quality matters a lot here. Turmeric, which is great for chronic pain, is a minimum of ten dollars for a month supply. Then often people in chronic pain use Magnesium which can be relatively cheap, again the type and quality counts here. The one I have had the best success with is fifteen dollars a month. I use a strong omega three supplement as I have both heart issues and mental health issues, and that helps with both.  I also take Melatonin as opposed to a prescription sleeping aid.  It is not hard for me to spend fifty dollars or more on supplements [a month? how long?]. Fifty dollars is where I am at right now with just the basic cannot-do-without supplements.

This is really just the first layer of unseen costs of being chronically ill.  This is not even taking into consideration that the kind of mattress you sleep on matters, keeping shoes fresh and supportive by changing them out every three to six months.

This does not even take into consideration that people that have chronic illnesses tend to not be able to work but yet not meet the terms for disability through the government.  I am lucky I have decent insurance and my costs are low comparatively speaking. Shockingly enough, to many the answer is not through medicaid, I actually paid more and struggled more going through the medicaid system.  The stress the system puts you through to jump through the hoops to get what you need……it’s unbelievable.  Even with the good insurance we have now my out of pocket expenses are anywhere from 100-150 a month. This is not including prescriptions that are significantly cheaper with insurance.  This is what I have it boiled down to as essentials. It could easily be twice that.

I often deal with people who are very flippant about my chronic issues because they are not visible nor are they the same from day-to-day.  To date my diagnoses are: Myofascial Pain Syndrome; Chronic Fatigue Syndrome; Fibromyalgia; Degenerative Disc Disease of cervical, thoracic , and lumbar spine; Irritable Bowl Syndrome triggered by a corn intolerance; Supra-Ventricular Tachycardia;  Raynauds; malabsorption of Vitamin D, Potassium, and Magnesium; severe outdoor allergies which borders on allergic asthma; OCD with tendrils of ADD.

I don’t look sick. I don’t like to talk about being sick or what I can or can’t do. If I am discussing it in detail with you, I trust you a lot.  I am not willing to continually prove my conditions to people over and over. What would I do to do that? Carry X-rays and MRI reports and blood test results around with me constantly? I am not being lazy or taking the easy way out and yes I can read that in your eyes. After dealing with Doctor after Doctor after Doctor who did not believe me, I can tell exactly who does and doesn’t believe me. Some of the disbelief comes because I was super active and really did a lot one day. The next day it takes everything I have to get out of bed. I am paying for being so active. When you have a kid, you tend to push yourself to do more, for them.

I have gone through the disability process with the government. Essentially they believe I have the issues I have but because I can parent to some extent and function to some extent, I am not disabled. What I was doing when I was working and trying to parent was not functioning.  I was a mess. I could not enjoy any time with my daughter. I focused on getting through the day til I could medicate and hopefully sleep. I had no quality of life, not to mention the immense damage to my organs that the prescriptions were doing. It has taken two years off of three medications to get my liver and kidney functions to somewhat normal levels. TWO YEARS.

It has been a long hard road to get my health back to some extent.  We are lucky that we have family and close  friends who understand and help us. We are functioning, barely, at a fourth of what we were earning when both of us worked full time, and this is with my husband working two jobs to help support us. If anything ever happened and he could not work, we would be completely screwed.

************************************** some exciting news in store***********************************************************

 

Below is a brief outline of the campaign, which illustrates what we’re trying to achieve and how people living with chronic conditions can help.

 

Via the “Hidden Cost of Chronic Illness” campaign, Debt Advisory Centre aims to raise awareness and visibility of the challenges faced by those living with chronic and ‘invisible’ conditions. We’re also conducting our own research into perceptions of chronic illness, especially in relation to the work environment.

 

 

We’d like to know the following about the patients that use your services;

 

  • How long they’ve had their condition.
  • What their specific condition is.
  • How it affects them (professionally, socially, emotionally)
  • What things they have to purchase in relation to their condition.
  • What other financial disadvantages they face.
  • Roughly how much they spend per month in relation to their condition.
  • How they feel others perceive their condition (employers, friends, strangers)

We’re keen to gather as much user-generated content as possible and welcome contributions via email and video.

 

Once we’ve gathered the information, we’ll combine it with research we’ve conducted ourselves and research supplied by other organisations ourselves. We’ll then be distributing and sharing those findings with the media.

 

Patients can find out more by visiting the campaign page http://www.debtadvisorycentre.co.uk/advice/Illness-and-Debt-What-are-the-Hidden-Costs-of-Chronic-Illness-0-4163-0.html

 

Please note, if you aren’t already aware, that Debt Advisory Centre is a fee-charging debt solutions provider and not a charity.

 

The precarious state of my sanity, aka week five summer break

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One month down, I am over it. Already. I just want to sleep. I am over the running here and there. I am over the heat. So so so over the heat. I enjoy spending time with my daughter. Really I do. I also enjoy just having Mommy time. Summertime does not equal enough Mommy time. I am again finding myself in need of remembering to keep it balanced. She does not have to be entertained every second.

I have dealt with more flares than I expected. We had more roadblocks than I expected. I always feel like I did something to cause the flare. I let my guard down somehow. I spend so much time reviewing what I have and have not been doing to keep myself at the same level. Have I been resting enough? What about my diet? Have I been active enough? On one hand I know its more of a balance thing and its not possible to keep it in balance always.  Flares are gonna happen no matter what.  I also know I have a tendency to push when I know I am starting a flare. It works for me sometimes, when the kid is in school. It is not working for me with her here. I even added back in almost nightly baths in Epsom salt with menthol and lavender.

I am trying to remember I need to be patient with myself as much as I do with the kid. I knew I would flare. I guess I just forgot how badly I could flare. If that makes any sense at all.So here is what we did accomplish:

Sunday June 29th

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A very mentally stimulating sermon on Sunday. We are lucky to have the talented Barbara G Walker in our congregation. I love when I am intellectually stimulated to learn more on the subject! All in all a very relaxing and enjoyable day.

Monday June 30th

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Monday we walked to my cleaning job. Well I walked she rode her bike. She is getting really good at it. She lost TV and computer privileges so she had to read the whole hour and half of my cleaning. As you can see it was tough.  Neeka loves it though.

We also found this chair for the kid. No we did not buy it. It was some ridiculous price and space is at a premium here. We did however take a picture. It lasts longer that way.

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Spritzers were my thing when I was pregnant with her. She thinks she has a soda.  Little bit tricky mom right there.

Tuesday July 1st

We spent the morning doing Math and reading and we skipped writing in favor of sewing her purse. A light lunch and we were off to a library class.  We car pooled with Princess P and family as the one we went to is ….a bit creepy. There is a large homeless population that congregates around the library. We used to go to this one a lot. It is kinda far away though and there are several nicer ones closer. The wonderful world of invertebrates, so interesting! Starfish are now called Sea stars because they are not really fish. Whatever, Patrick will always be a starfish to me.  There was even a hermit crab……race.  The marine biologist was great and stressed the importance of conservation. He gathers all his specimens from the sea and returns them after the class.  So even he didn’t know how the races would go.

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Princess P was more interested in exploring so I took her out to read and explore. It was a real hardship to spend some quality quiet time with her, let me tell you. The lap sitting, the little hands, the kisses, and yes even the sassy.

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Wednesday July 2nd

The same marine biologist had a class at a different library. He said it would be the same content but that each class is customized to what the kids were interested in. The kid was a bit more willing to touch things at this class , there were a few new preserved animals and live animals. This one we also heard a story about tides and there was a discussion about tides, how they work, how far apart they are, why they are good.

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Another hermit crab race with new hermit crabs. This time they raced across the US….however the oceans were a big draw! lol.

Thursday July 3rd

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Math tutor lesson .. Daddy sat in on this one for the beginning while Mommy snuck out for breakfast with a friend. We did our hour of reading , an a writing prompt. Then we just took the rest of the day off. The  storm passing through is really messing with me. I know I am on the outskirts of this flare and I really want to rest but I also suspect the amount I have been resting is also messing with my sleep at night as I have not slept well the past two nights.  This is a chronic illness rock and a hard place.

Friday July 4th

This year we were really popular and got three invitations to fourth BBQ’s. We were going to go to Princess P’s house however without a car, transportation is an issue. Instead we went to a friend’s house who is much closer.Much more exciting though was that we found our new car! That will probably have it’s own blog post though because I am that excited about it. Here is a sneak peak though

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We had a great dinner…..

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We went downtown and parked the car , we then walked to get Gelatto and then down to the beach.

It was nothing short of gorgeous.

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It took three weeks or better but I finally got to the beach again! Hopefully now that we have a car we can go more often as originally planned.

Saturday July 5th

Today is all about recovering. I have not even gotten out of my pj’s. I have not had coffee. I don’t want to wake up. I have not had the tv on.  I am paying the price for not only being so active yesterday but also my diet choices yesterday. The bathroom and I have spent  a lot of quality time together. I doubt I will even get dressed today let alone get out of bed for more than a few minutes. Medication , possibly a bath and lots of water are on the menu today.  My stress level and even my conscientiousness level will go down dramatically as the kid will be off to a sleep over.

Start

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That is the key. First you have to start.
Many people assume because I go on walks, I am feeling better. It looks impressive that I walked two miles.It is impressive but it did not happen overnight. I has been over a year though since I started walking and it has been slow and steady increase.

When I first started half a mile completely fried me for the day. It was all I could do to make it back to the house.

I didn’t give up though. I kept doing it. First it was one walk every three days.. Then every other day.. then every day.

This allowed me to ease  my Fibromyalgia and arthritis ridden body  to walking. Giving myself time to deal with flares when they happen.

It wasn’t about stopping when I hurt. If I did that I would never get anywhere. You will find that there is a period of time that the walking makes you feel better. It is typically ten minutes into the walk for me. Then I can go for a bit a feel pretty decent. Then the pain returns. That’s when it is time to turn around or be heading back.

Be gentle with yourself. Fibromyalgia does not like it when we try to minimize its impact on us. Remember that you need rest after these walks. Typically there is not a lot left for me to do for the day when I take my walks. If I take them too early in the morning I am completely fried for the day.

Track your walks with a pedometer. I use an app on my phone. It helps to keep you on schedule with walking. It is also an added bonus of something to show your doctor to show you are trying.  It is also fun to see the patterns you walk on the GPS mapping part of it, at least for me it is.

It is also important to remember to hydrate yourself. If you don’t like the taste of water. I recommend chugging at least eight oz of water prior and after the walks. Remember to keep hydrating through out the day.  I have found that people with Fibromyalgia need more hydration that normal.  It helps your muscles in so many ways.

Something else that helps is having someone else go on the walks with you. When I first started out I went with my husband or my best friend, neither of them have chronic illnesses but, they know when I am pushing myself too much. Now I tend to walk with another friend who has chronic illnesses. We keep each other accountable for walking. Now we tend to walk twice a week and we are averaging two and half miles. Sometimes it is too much for me, sometimes it is too much for her. We get each other through it.

Keep playing around with it and find what works for you. It maybe that it works better for you to walk in the morning. It maybe something you do by yourself,for yourself. I promise you will find it helps in so many ways than just exhausting you.

Walking can help improve your mental state, ease anxiety, it boosts your energy levels, it increases your Vitamin D intake(since most people walk outside in the sun). It strengthens your heart and other muscles, it aids weight loss. It can also help prevent dementia and lower the risk for other disease. I also find that when I am dedicated to walking, I sleep better at night too.

It is to your benefit to get out there and walk. So get out there and just START!

 

Rest when you need rest

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Rest! I can’t rest I have a house to run! I have stuff to do! I have cleaning to get done! Oh and I got to get time in for me and get everyone where they gotta go and think about dinner and I CAN’T POSSIBLY REST!

This is the one area that I am constantly struggling with when it comes to managing chronic pain and illness. I am absolutely horrible at it. Then when I do rest, I feel guilty about resting!

I know I have been doing too much. I know it. I have felt it. I did it anyway. I had a lot to get through. December always brings so much running and doing. I can’t tell you how many times already that we have been double triple or quadruple booked this month.  Of course on some of them we made decisions not to go or not to do it.

I get caught up in wanting to see my daughters reaction to things. To seeing Santa to seeing the Christmas lights. To experiencing it all through her again.

So when I crash. I really really crash. I rarely sleep during the day as I already have soooo much trouble sleeping at night. Today though it wasn’t a choice. It was a demand. My body demanded I nap.  For once when I woke up I felt better. That doesn’t always happen. It tends to happen more when I crash though. This is the second time in five days I have crashed like this. I need to get better at truly resting. Laying down in bed watching tv. Sitting down to write is not resting. I need to just lay down and read or lay down and watch tv. Not try to always engage my brain.  If I need to grab a cat and snuggle and just pay attention to petting the cat, then that is what I need to do.

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It doesn’t do any good to beat myself up more for resting. It doesn’t I know that. This morning though I was feeling guilty about not getting any cleaning done. Not moving the laundry along, not finishing the few dishes , not getting the floors done.  Then I realized I was not getting anything done until I at least attempted to sleep. Sleep I did. I now feel that maybe when I come back home I can get some cleaning done at least do the few dishes and make dinner.

So today I have a renewed motivation to be better at resting. To pace myself better. So that I can better enjoy the season. That even when I make sure to schedule in self care in a walk for myself I need to also schedule in time to rest. To actually rest and to not feel guilty about resting. It is a form of self care and my body needs it more than most. To rest and say, its okay to rest.

The insomniac waltz

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Fibromyalgia brings many joys. Like learning how to do the insomniac waltz. A mixture of sleep deprivation and pain.

 

Get comfy in bed. Got to go pee. Get up to pee. Get comfy in bed.

Five minutes later flip to your left side. Close your eyes again. Deep breathes.

Sleep for maybe thirty minutes. Wake up.

flip to your right side.

Sleep for maybe an hour. Wake up

lay on your back.

Nope lay on your stomach.

Nope lay on your back. Listen to deep sleep meditation. Listen to another one.

Get up have a bowl of cereal.

Count how long its been since last medications. Take some more.

Lay back down. Play Facebook games until can’t keep eyes open.

Go through relaxation techniques. Fall asleep somewhere in the midst.

Sleep for two hours. Not a second more!

Wake up stiff and sore.

Change positions. Scroll Facebook.

Fall asleep.

Thirty minutes later……

alarm goes off for the day.

Sleep clean sleep

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Last night I was suddenly overwhelmed with exhaustion. It wasn’t even a choice. It was you are sleeping now.

I slept for about an hour around six pm. I vaguely had an idea that it was after five. That was about it.

I was able to get back to sleep and sleep until 10:30. By eleven thirty I accepted the fact that I was now awake.

Instead of trying to force sleep I got up. Did a little laundry. Did some dishes. Wiped down counters. Swept the floors. I didn’t think I just did it. Well I did think a little bit. I wanted to vacuum as well but by this time it was almost one am. Probably not the best idea.

By two am I was back in bed.

Sometime around three am I fell back to sleep.

Sometimes you just got to go with what Fibromyalgia and its symptoms gives you.

Sure I would rather have been sleeping. However that wasn’t happening. Tossing and turning is exhausting all on its own.

I am fairly certain that the few hours I did sleep. I slept better than if I had tried to stay in bed and force sleep.

Of course, this only comes from trial and error. Meaning there have indeed been nights that I tried to force sleep.

Life with a chronic illness, add or two or three, requires some trial and error learning.  It is an ebb and flow that takes some practice to finesse.

Sometimes it just throws you lemons and you don’t get what it is trying to tell you. Frankly sometimes I don’t think it really knows what it is doing. Fibromyalgia is a fickle fickle illness.

I got a box!

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Nevermind the fact that I asked for the box to be sent to me.

I GOT A BOX! It was like Christmas came early!

I tore into it not unlike a kid at Christmas time.

And then the Mamalode exploded on my bed.

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I had to spend some time pouring through them. Laundry and dishes obviously had to wait. This was way more important.

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Not only was I excited by the back copies but I also was touched by the card and that inside it was handwritten. It is rare anymore that anyone anywhere sends things handwritten unless they are among friends.

As Mothers we are pulled in so many different directions all at the same time. This is a perfect magazine to have in the car to flip through while sitting in carline. There are quick little reads as well as longer articles. One thing that really caught my attention was the last page, a poem by a child typically a preteen or teenager. I love seeing things from their perspective.

So I took some to the baby rhyme and sign at the library and it was a pretty big hit. Some of the kids were actually a little more interested in the bright and colorful candy on the front…ooops.

Princes P says it tastes just fine.

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So I read some as I was waiting for the girls to get out of school. I kind of just flipped through but got stuck on one about pregnancy loss. It touched me deeply and it took all I could do to not cry in the car. There is a little section in the front called “Because I said so.” very easy to read a submission here in under a minute. Truthfully a friend of mine keeps her Mamalode and other Mommy magazines in the bathroom. You know sometimes that is the only few minutes we mothers get to ourselves.

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The girls were pretty enthralled with the back copies. There were a lot of discussions about pictures and it turned out some of them were advertising pictures. Something that as a Mommy I passed right over.  There was some discussion about what a trailhead was….which quickly digressed into what happened at school today.

However they were drawn back after our trip to the library, yes my second trip today, for reading with the dogs. I looked back at the stop light to see this in the back seat.

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I am pretty sure however from the amount of giggling that they were whispering amongst themselves and using Mamalode to “hide” from me.

On the Facebook page for this blog I call our followers Stalkers. Stalkers in a good way. We support each other and laugh together. This is exactly what Mamalode does as well. So go be a good stalker and follow them everywhere. I do and its nice to see things pop up in newsfeeds and whatnot amongst all the other things that are in my newsfeed. This is one that feeds me. So that I can keep feeding others.

So get stalking already!

Instagram: http://instagram.com/mamalode

Twitter: https://twitter.com/Mamalode

Facebook: https://www.facebook.com/Mamalode

Pintrest: http://www.pinterest.com/mamalode/

Youtube: https://www.youtube.com/user/MamalodeTV
and of course good old fashioned online website :http://mamalode.com/

When mornings go wrong…..

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Okay thats basically every morning when you have Fibromyalgia as one of the symptoms of Fibromyalgia is non-restorative sleep. The whole non-restorative sleep thing mixed with insomnia with frequent waking. Mornings are hell. At least until the meds kick in and the second cup of coffee is swallowed down.

The night before the kid wanted to sleep in our bed. Fine. Whatever as long as it was bedtime I was good with it. Plus it had been a while since she asked and I got to snuggle with her.

I did my typical awake every two hours up for thirty minutes or so before falling back to sleep. I knew it was after 4am as that was the last time I woke up. This time  I woke up because I felt something wet. It is the greatest way ever to wake up. When you know for a fact it wasn’t you who peed the bed. I moved over. I peeked at the alarm clock. 545am. Swell. Husband gets up and gets ready for work.Peek at clock. 615am  the Kid gets up and went to take a shower. I maybe got another twenty minutes of sleep before she was back.

“Mommy I am cold.”

” Go put clothes on.”

“But then I have to move the towel. Its keeping me warm.”

“I thought you said you were cold. Go put clothes on for school. Remember its going to be chilly out. So PANTS.” this was said to her retreating form.

Do I really have to get up? Grab my pills and take a swig from the water bottle that is always on my bed stand. I am just laying there, waiting  to feel something other than sore muscles and joints that are angry with me.  To have some kind of motivation to actually get up out of bed. Because really I am pretty sure roadkill that has been hit over twenty times feels better than I do right now.

The kid comes back in and asks me to help button her shirt.

Seriously? She is eight can’t she do this yet. Its like an ungodly hour. This should be illegal.

By seven am I am awake. I might not be happy about it. But there it is. Fact of life. I send a text two friends…. “I quit” One says back. “Amen” The other says ” Me too”

This means we can go back to sleep right?

Stumble out of bed to the coffee pot. No coffee.Seriously? (I know I am spoiled here, that hubby makes it most mornings)

I took a few minutes to just smell the coffee beans. I may have held the coffee grinder up so that my nose could smell them grinding.

I went to the dryer and pulled the pair of jeans I had set to dry at four am when I was up out(sometimes I try to make my thirty minutes awake productive. sometimes it exhaust me enough that I don’t stay up the whole thirty minutes. Of course that’s an approximate time, I don’t really count each time.)  Get dressed myself.

Found the kid a jacket. It really was hiding. It was right on top of the basket of clothes on the chair. Really hard to find.

As I hand her the jacket she just causally mentions….”I peed my bed the night before too. That’s why I wanted to sleep in your bed.”

She walks off as my jaw hits the floor and I just have no thoughts. Nothing. Actually no, give me a brick wall and I will bang my head over and over and over and over.

Then there is the most sweetest sound ever. The ding that signals the coffee is done. Its only been forever and a day since I grinded those beans.

Seven fifteen. First cup of coffee . FINALLY. Let the sanity flow back into me.

Get on the computer and do some stuff.Return emails and publish and post the blog post for the day.

Seven forty five we are stripping the beds and doing laundry. Next up is  feeding the dogs and corralling the cats in the bedroom for the day. The kid now wants a cheese stick and an apple. Fine whatever.

Second cup of coffee.  Send the kid out to the car. She needs a head start. You know all that molasses that you have to go through from the front door to the car door.

Out the door at 820.

And I wonder why by 845am I am ready for a nap.  Thankfully this is not every morning.

Simply sleep

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Sleep.

So simple.

Lay down, close your eyes….and it happens.

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Except when it doesn’t.

The first night it’s not so bad.

A little extra coffee.

A little extra soda later on.

I got this.

So, because I didn’t sleep so good last night and I have been tired all day, I will sleep really good tonight!

Then sleep laughed and laughed and laughed and laughed.

Sleep and I have come to an agreement.

Well, mostly.

Sometimes sleep likes to throw a wrench in here and there.

First, you need to read about sleep loss and how to correct it.

Read several different sources.

I can not tell you what will work for you.

I can only tell you what works most nights for me.

Even then, I only get two or sometimes three hours of sleep at once.  Sometimes I can roll over and go back to sleep.  Sometimes not.

Normally, I start by winding myself down around four pm. Mentally.

That goes as it does most days. By four pm I start THINKING about sleeping. Sometimes it’s like, “Why is it not bedtime?” Sometimes it is like, “Ooh, it’s four pm! Need to start winding down for bedtime.” TELL YOUR BRAIN BEDTIME IS COMING. I don’t know why it works. It just does. For me.

Around five or five thirty, I take 5mg of melatonin.

Melatonin is really tricky. It seems so easy. My 5mg may knock you out for days. I suggest getting a bottle of 1mg, and increasing until you find your magic number. I didn’t and started at ten mg. It DID work. I just happened to find by chance months later that 8mg split up over time was my magic number.

Then, I either take a magnesium supplement or drink Natural Calm typically around six. Magnesium is a natural muscle relaxer, and with fibromyalgia that is not a bad thing at all.

After dinner, mostly at seven thirty though, I take my heart meds, Benedryl and an additional 3mg of melatonin.

For the most part, the husband does bedtime – for the most part.  It is harder to keep track of time and meds/supplements when I am doing it. It IS possible though. It’s not always important the actual time, as opposed to the distance of time between meds. Kinda like stepping down a staircase.

So… where was I? I got distracted by the judgey little squiggly line…

So last is around eight pm – my Ativan and aspirin. If it’s a really bad day, Tylenol gets tossed into the mix.

Like I said, it’s crazy. It’s not for everyone. It’s what works for me.

Some nights I have forgotten completely, or I am out and about and then it’s TAKE ALL THE PILLS and hope for SLEEP.

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Then there are nights that no matter how much I tried, how much I continue to try, sleep is an elusive butterfly that will NOT STAY STILL FOR ONE SECOND.

I have learned I can go without a lot more sleep than I ever thought possible.

So read up on insomnia from several different sources. Read about insomnia with not being able to fall asleep. Read about insomnia without being able to stay asleep. Read about what happens when you have both.  Read scientific articles, read holistic articles, read it all.  What resonates with you? What can you incorporate into your life?

ALSO BEFORE YOU START ANY SUPPLEMENT EVER, TALK TO YOUR DOCTOR.  I am not your doctor. The pharmacist is not your doctor, although they can be your friend.

I also crank the AC down to 70 and have two fans going…..I like it cold…but I also like to wear long sleeves and pants to bed and bury myself under at least a sheet a blanket and a quilt….at least…

Then there are the pillows. I like lots of them. Four is sufficient. But I mostly sleep with five and then a body pillow folded in half as well. All behind my head.

I have post nasal drip as a constant companion. It does not like to let me breathe if I lay down. SOOOOO at least a 45 degree angle most of the time.  Which also explains the Benedryl at night.

When you know what your OPTIMUM sleeping environment is, you can take steps to rule out what is keeping you from sleep or keeping you from staying asleep.

It becomes a little check list just like the one you had when the kid was a newborn. Could it be this? No we did that. Could it be that? No I did that.

Sometimes Sleep is just a bastard and you won’t find what is missing. Mostly though, I know what happened.

When you just want sleep

Standard

Sleep is sleep right?

Wrong

People with Fibromyalgia and Chronic Fatigue don’t get restorative sleep. I should say, they don’t get nearly enough restorative sleep.

I might sleep for two hours at a time. Out of that two hours only approximately fifteen minutes of it was restorative sleep.

Restorative sleep, that sleep that makes you feel refreshed and energized and rested.

I really don’t remember what that feels like. Oh sure I get some. I wake up and am awake and refreshed however it is only two am. Then tossing and turning happens. I get maybe another two hours of sleep before the door flies open.

“Mommy can I watch Cartoon Network?”

“No. Its a school day.” It is painful to even think that clearly that early in the morning after very little restorative sleep.

I find school days are slightly easier. I can push myself to function with the illusion that I can come home and go back to sleep.  It rarely happens. I am pretty good at lying to myself about it though. Well at least about going back to sleep.

The weekends are harder. I still want to sleep in. I want that luxurious feeling that comes with it. Some weekends it takes everything I have to get out of bed. Its better if I make plans. If I know someone is coming over or we have to meet someone I can get myself moving.

Part of my motivation is I don’t want my chronic illnesses to ……….take away from the wonder of childhood. She needs to be out exploring and doing things not inside watching tv.

For the most part we stick to a pretty strict schedule. We start winding down for the day most of the time by five. I divide up some of my night time medications . Its kinda like stepping down from the days activities.  Some of this has been pure trial and error. I can’t take this one until seven thirty because it makes me too sleepy and such. Bedtime is eight ….eight thirty at the latest. There have been plenty of times that I leave the last bit to hubby to get the kid into bed. I spend 12 hours in bed, but leave the bed at seven am feeling like it was two hours. Other nights I get somewhat decent sleep, those days I try to take advantage of.

Its not always this cut and dry.  There are many days that I function. I pick up the kid from school, take care of the dogs, but it seems like cement fills my legs and arms. I have no desire to do anything but lay in bed watching tv and possibly scroll FB. I don’t really care if dinner is made or if the kid is watching tv or if the dogs need to walk. My body is done and it doesn’t want to squeeze out even a tiny bit more.

For me this is where self-care is super important. The more I ignore my needs the more likely I am going to fall into that paragraph above.  I need to walk. I need to be outside even if its miserably hot outside. Nature centers me like nothing else. So does taking time to connect with friends. To laugh til our sides hurt and tears are running down our faces, the looks from the kids that we have gone crazy is just a bonus.

The thing about self care is it is a sneaky bastard. Not only does it want you to forget about it , it also needs to be changed up here and there.  It says it won’t matter just this one time if you don’t get time alone. It won’t matter if  we don’t make it to that playdate this week. Then before you know it its been over a week since you did anything more than just function and survive. The other thing it likes to do is convince you that this one thing is all you need. So you do this one thing, say take a walk, and before you know it, its not helping you anymore. Its just another part of your day. So you have to make sure you are doing different little things for yourself. Meet a friend for coffee one morning, go out to lunch another, take a walk the next day, whatever gives you that shoulder dropping sigh of relief. Where you can recenter and refill yourself.

Sometimes you have to force the self care.  Make that playdate even if you don’t really want to.  Take a detour and a little walk before picking up the kids.  Let yourself lay in bed and read a book Saturday or Sunday mornings.

So what does all this mean? How does this link back to sleep? The better you care for yourself , managing your meds, taking time for self care, getting some very light low impact exercise it all helps us sleep better. I know before I had chronic Illnesses I didn’t think about my actions and what I was doing each day as much as I do now.

There are still times that I wish I could just lay in bed. We do have times that we do that. I have some good friends who tend to know before I do that I need the break and take the kid over night.  Then I realize wow I really really needed that. I sleep better because I am not keeping one ear open for the kid, or I actually allow myself to take meds that will make me sleep that heavy. It all depends on how I was sleeping.

I think people with chronic illness and or chronic pain have to work harder to get ourselves centered. To find our inner peace.   Our inner peace likes to run from us just a bit more than normal people. It makes every aspect of our lives just a tad more difficult. The day to day stuff people take for granted.

All we want is sleep. Deep restorative good sleep so we can function.  So that we can do more than function, so we can do more than survive. So we can thrive.

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