The Strange Foe and Friend by Amy Nora

When it is 3AM and you are awake for your sixth day straight from painsomnia, it is hard to see anything good or nice in pain.  When you have a chronic disease such as Lupus, Fibro, Rheumatoid Disease, or many of the hundreds of others auto-immune diseases pain is just a part of life that sadly you live with.  Pain is a function that warns us that something is wrong.  It is our body warning us of danger in the case of a heart attack, of a catastrophic injury, or of the constant disruption of a system or systems.
This morning, I was laying there thinking that the pain in my legs had become almost a comfortable old friend.  It Is the pain I know that lets me know I have gone to far, the cliff is about ten feet ahead, but I am okay.  It is actually the oldest pain of my disease state.  Maybe that is why it is so familiar to me.  I hate it, I am by no means saying that it is something I like or appreciate as an entity within me.  Yet that leg pain is always the first to warn me that my disease is going haywire, that I have pushed to hard, that my world is not right.  In an odd sense, my foe is also my old friend.  It lets me know that my nemesis is preparing to strike.  It has become something I have learned to cohabitate with regardless of whatever else is going on.  The fire may burn hot with inflammation, but it is a familiar inflammation I know.   I know what will come next… I know what the next steps of my treatment protocol will be.
Today, I challenge you to think about what your warning symptom/Sign is… Do you have something that lets you know you are getting ready to flare?  A trigger?   Is there a common symptom or symptoms that warn of a coming flare?  Part of disease management is being able to target these.  Sometimes, no matter what you do there will be no warning.  You will wake up one morning in a flare, or you will be out to lunch and by the time you get home you will be unable to walk because of fatigue and inflammation.  But knowing symptoms of flares help prepare you to fight back against these diseases.
You can then work with your doctor to isolate these symptoms and work on a treatment protocol when these symptoms arise.  It also gives more information to your doctor as to how your disease works and acts.  This grants them more insight and information.  Remember, any information that we can continue to glean on auto-immune diseases is needed.
Knowledge is power!  Preparing yourself, Knowing what to expect and how to help yourself empowers you.
In Lupie Love…..

My Top Ten Must Have Items For Living With A Chronic Illness

I don’t know about you, but I am really bad about taking time to care for myself. Or spending money on things that will benefit me. I often put others needs before mine and that is something I’ve always done that. Until recently, when I realized that my needs truly need to come before others and I need to do more to take care of myself and not just symptom management and doing only what I feel like doing. So I won’t usually take the time or spend the money to take care of me outside of what has to be done daily just to function. Sometimes it will really take a reminder to spend some time taking care of my skin and and body outside of my daily routines. I assume that others are like me as well. Over the last year I’ve actually been taking the time and spending the money to take care of me. So I decided to share some of my favorite products that I think others with Chronic Illness/Chronic Pain should have on hand and would enjoy.

Bath Bombs/Epsom Salt

One of the things I have found that I enjoy and can be both beneficial and a way to pamper myself is a good hot bath. So I wanted to tell you about a couple of my favorite items I use in the bath.

1. One of my FAVORITE things is to take a HOT bath. So the first thing on my MUST HAVE list is a good Bath Bomb. Most of my bath bombs come from an Etsy shop called “ThisLittleLymeOfMine.” Her products are not only aesthetically pleasing, they also have healing properties. She uses Himalayan Pink and Dead Sea Salt to make her products, both of which are known to have a healing properties. One reason that I like to support this shop is because it is owned and run by a fellow Spoonie. She is currently running a special for those who use the code 5OFF15, which will get you $5 off a $15 purchase. You can visit her shop by clicking on the link above.

2. Another must have in my opinion is a good EPSOM SALT! I’ve tried out many different kinds of Epsom salt throughout the years. And my most favorite is Relief MD Lavender Epsom Salt. I use this a lot at night due to its calming properties. Lavender is known to help one sleep, and the magnesium in the product helps to soothe sore and tired muscles and joints! I have found this in stores local to me but it can also be found on amazon. The link above will take you to the product on Amazon.

Skin Care

The older I get the more I realize just how important taking care of your skin really is. And not just the skin in your face, we need to take care of all our skin. We only get one face so we have to take care of it. I’ve been looking for some good skin products over the last few years and the following are the best I have found.

3. The next thing I want to share is lotion, because I have been having some major skin issues due to my illnesses. And I know I am not alone in this. Many with chronic illnesses will deal with skin issues. So I felt it important to share a good product with all of you. Recently, I have really been liking the Jergens Wet Skin Lotion! One of my favorite things about this lotion is that you can put it on your skin while it’s still wet and you don’t feel slimey. When it dries my skin feels so soft and nice!! By clicking the link above or looking at the picture below you will see that if comes on amazon in several size and quantity options, and 5 scents. My favorite is the coconut, it reminds me of being in a beach with a drink in my hand!!

4. Another line of products I’ve been loving is the Senegence Skin Care Line. (And no this is not a shameless plug because I sell them! I truly love them and that’s why I’m sharing!) I use the whole normal to dry line which includes a cleanser, a day moisturizer and a night moisturizer, as well as some other products. Including a polishing exfoliator. Even though I have some major skin issues on my face as of late due to my lupus this line has significantly helped those issues. My skin is much more even and much less red. The dark circle treatment has done wonders as well. You can see before and after pictures below. And if you want anymore information on the skin care products I use just click the link above.

Heat Products

One of the non-pharmacological ways I’ve found to deal with my pain is by using heat! That’s why I want to share my two most favorite heating devices.

5. When struggling with chronic pain a good HEATING PAD is essential. Over the last few years I’ve tried many different heating pads. Most of which didn’t hold up to frequent use. I just got the best Heating Pad I’ve ever had. They have a couple different size and color options for this pad. The things that I like about this specific heating pad is that it’s made more like a heated blanket. This particular product isn’t like the older ones where the cover and the pad are separate, and over time the heating pad gets misshapen and doesn’t fit in the cover. Another positive thing about this pad is that you have options of how long you want the pad to be on before it shuts off. You have the option of a two-hour timer or no automatic shut off. Another benefit is the automatic shutoff. I also like that the temperature can be set anywhere between 1 and 6. Not like the older models where you got not hot, really hot and way to hot!

6. Heated blankets are simply a MUST when you have chronic pain!! There are different sizes and options for these blankets. I have one that’s a heated throw that’s nice for cuddling up on the couch. And one that is queen sized and stays on my bed. All of my heated blankets have been made by Sunbeam. My all time favorite is the Sunbeam Dual Control Heated Blanket. One thing I like the most about this blanket is that there are dual controls so if you were sharing the bed with a significant other you can each set your own temperature. And there is a wide array of temperature options. My other favorite thing about this exact blanket is that you can preheat it. I like to turn on the preheat function about 10 minutes before I get into bed so it’s ready for me when I’m ready. When you are ready to buy this kind of blanket you should watch the prices. Certain times of year (usually during the holiday season) the blankets will drop in price. .

Sleep

Sleep is so important when you are chronically ill. Yet it is often one of the biggest problems we deal with. I have found a few items that have significantly helped me in my battle of with poor sleep.

7. One of my favorite ways to pamper myself is by putting my super soft sheets and fleece blankets on the bed. The ones I currently have are T-shirt sheets . They feel exactly like your favorite soft T-shirt. In my opinion there is nothing better than getting into a clean, super soft, set of sheets! The particular sheets that I have and are pictured below will come in 9 different colors so you should be able to find ones to fit your bedroom decor!

8. A good BODY PILLOW is a must! When you deal with chronic pain of any kind or insomnia good pillows are important. Especially a body pillow because it helps you to find THAT spot that is often very hard to find! When you look them up you will find that they are called maternity pillow because of the shape. My body pillow is a maternity pillow, but has really helped me sleep and I have less nights of insomnia since I got this pillow.

9. Anyone who struggles with migraines, light sensitivity or even insomnia needs a good Sleep Mask. Like many other items on this list I have tried MANY different sleep masks over the course of several years. Things you should look for in a sleep Mask is that it truly blocks all light and is the correct size and will fit your face. Like many other products, you get what you pay for, and that’s the same with sleep masks. The cheapest is usually not the best. But you also don’t need the most expensive. Just try a few and find what you like. The product linked above and shown below is one of my favorites

Miscellaneous Items

10. I think all ladies (and men I suppose) should have a good foot spa! This spa is the one I have and I really enjoy using when my feet hurt! It’s also fun to use for a girls night in! I used it a lot more when I was working and had been on my feet a lot. But you can really use it anytime. It comes with interchangeable pieces that can be used for massage or scraping the dead skin off your foot. Any spa would be good. The one I linked is simply the one I have.

These are just a few of my favorite MUST HAVES that I discovered over the last few years. The items I mentioned and linked are good for all people and can be used by anyone. But they are all very beneficial to those dealing with a chronic illness or chronic pain. These days any product I find that will make my life easier is going to be high on my list of necessity and to share with other. I feel like we all need to support and help each other, one way to do that is to share the things we have found in life that make things easier. I hope my list will help one of you and possibly make part of your life a little better or a little easier. If you have any questions about any of the products please just leave them in the comments for me.

With Love,

Amber

Why Is Sleep So Important?!?

Sleep…. sleep…..sleep. It’s all my doctors seem to want to talk about these days. I can count on every doctor I see to ask me how I’m sleeping. When I tell them the truth I always get THAT LOOK! A look I’m sure anyone with a chronic illness/pain is used to seeing. Then they proceed to tell me why I need to sleep more. That being said I’ve always wondered how much of a difference sleep really makes. And why it is so much more important for us (the chronically ill and those with chronic pain) than other people. So I decided I would do some research and pass on what I found to you guys!!

The 2015 Sleep in America Poll found that 21% of Americans deal with chronic pain, along with 36% who suffered, in a period recent to the time of survey, from acute pain. That shows that only 43% of the population report being pain free. Pain joins with stress and poor health in general equals poor sleep, shorter duration of sleep and poor sleep quality! The people who suffer from either acute or chronic pain are more likely to have problems sleeping that will impact their daily lives. More than half of the people with chronic pain and were part of the poll say that sleep difficulties have or will interfere with their work. That. Number drops under 25% for those who have no pain. Those with pain also report that lack of sleep often Interferes with their mood, the activities they may take part in, relationships and overall enjoyment of life.

People with chronic pain also feel that they have less control of their sleep, the report that worry more about lack of sleep could affect their health. This group of people also say that they are more likely to have their sleep impacted by environmental factors that make it more difficult to get a good night sleep. These could be things like noise, light, temperature, mattress or even the person who they share the bedroom with. Just to give you an idea the survey indicates that sleep is a significant problem for those with chronic pain. The statistics don’t lie. It showed that almost one in four people with chronic pain (23%) said that they have been diagnosed with some kind of sleep disorder by a dr. That is compared to just six percent of those who don’t have any issues with pain.

These statistics above show what we all know. They show that those with chronic pain issues don’t sleep well. But why is it so important?!? Some doctors feel that the duration and quality of sleep should be considered a vital sign, because both are known to be strong indicators of qualify of life and overall Health. It is recommended that a person gets 7-9 hours of sleep a night. The importance of good sleep should never be underestimated. Sleep deprivation has been clearly linked to increased rates of obesity and increased body fat. Along with a compromise immune system, and even diabetes. Research shows that a full nights sleep (7-9 hours) is essential to help the body repair and rejuvenate. Lack of sleep has been linked to poor performance on the job and very slowed reflexes behind the wheel. A non-restorative sleep pattern can potentially cause diminished energy, depressed moods, fatigue and along with experiencing more pain. That being said new research is showing that getting a full night of sleep can not only help you be more alert and it can also reduce inflammation and pain. Basically the takeaway from this is that sleep deprivation and poor sleep along with chronic pain are part of a vicious cycle, that can be hard to break.

The good news they say, is that sleep deficits can be remedied easily and the effects of lack asleep can be reversed. There are specific ways to improve your sleep hygiene that can give you immediate rewards. The American Sleep Association there are some steps that one can take to make sure that you can get better sleep. These steps are done to help you wake up feeling refreshed and energized for your day!

The following are steps recommended by the American Sleep Association(ASA):

  1. Keep the room cool- In General when we sleep our body temperature drops. So it is recommended that you keep your bedroom around 65 degrees. That is so you can add blankets. The drop in body temp signals your body that is time to sleep!
  2. Go to bed earlier- Just like kiddos, adults can get over tired and won’t be able to fall asleep. Also for those who like to stay up late and sleep fewer hours research has shown that those who keep that as part of their routine oftentimes report more negative thoughts and more pain.
  3. Stay on Schedule- In order to help your body get used to sleep, try to go to bed and get up at the same time. By doing this your body will get used to this rhythm. This making sleep somewhat easier.
  4. No Naps- This is a very debated topic. That being said the ASA says that nap decrease the “sleep debt” that makes it harder to fall asleep at night. So by napping during the day you increase the odds that you will have trouble falling asleep and/or staying asleep!
  5. Turn off screens- Turning off all kinds of sleep a couple hours before bedtime for all ages allows the body and brain to settle down and shift into sleep mode.
  6. Make the bedroom only for sleep and intimacy- In today’s society the bedroom have become multifunctional. It is no longer just for sleep, it is used by some as their office, or a place to workout or a movie theater of sorts. By making your bedroom uni-functional it will make it easier to sleep there. It’s hard to relax and go to sleep when you can see your desk piled high with tasks that need to be completed. By making the bed and bedroom just for sleep one can hope that your brain will subconsciously associate being in the bed or bedroom with being asleep. They also say that one shouldn’t lay in bed and surf their phones, watch TV or even read. They suggest sitting in a chair in the bedroom to do those tasks and crawl into bed only when you are feeling sleepy.
  7. No caffeine or other stimulants after noon – in order to get better sleep it’s best to avoid any caffeinated beverages, cigarettes and alcohol after noon. By doing so it is hoped that your body & mind will be able to wind down and sleep when it’s time for bed.

Let me be real and honestly say I don’t think that this is something easily changed or reversed. As someone who has suffered with insomnia for many years and have made many of these changes through the years. And I just don’t see the great change in my sleep by doing so. That being said these tips may benefit one of you reading this greatly. So I feel like even if it hasn’t helped me I want to share this information with others in hope that it can help someone else. By doing this research I was able to see the dangers that can come from not sleeping. This the importance of getting a good nights sleep every night. So I am willing to make these changes once again and see if it is beneficial to me. I will try the tips listed above for a month or so and report back to you all as to whether or not they have improved my sleep!

Finally take a moment to look at the graphic below. It shows some Interesting information on this topic. Graphic is from the National Sleep Foundation.

With Love,

Amber

Resources

https://www.spine-health.com/wellness/sleep/chronic-pain-and-insomnia-breaking-cycle

Better Sleep Guide

https://www.sleepassociation.org/sleep-disorders-n/insomnia/amp/

Explaining Fibromyalgia in Six Quick Points

Fibromyalgia is a term that has been thrown around for years. For many years the medical profession used Fibromyalgia as a catch all. People who had generalized pain that couldn’t be diagnosed would be given the diagnosis of Fibromyalgia. The medical profession didn’t really seem to understand what caused it, and what could be done to treat it. In the past decade the condition has become much more understood and there are new diagnostic criteria that the patient must meet. I will discuss those shortly. Like many other conditions the more research that is done the more everyone understands it and it can be treated.

1. So what IS Fibromyalgia? The definition for this condition has evolved over the years. For now it is defined as a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and tenderness in localized areas.

2. How many people have Fibromyalgia? Most recent estimates say that there are 3 million cases per year!! According to The National Fibromyalgia Association, Fibromyalgia is one of the most common chronic pain disorders. It is estimated that 10 million people in the U.S. are affected, and an estimated 3-6% of the world population. This condition is normally seen in women, approximately 75-90% affected are women. But it also occurs in men and children of all ethnic backgrounds.

3. What causes Fibromyalgia? Currently researchers are not exactly sure of the cause of FM. That being said more research is being done all the time that is leading in the direction of determining the exact cause. Most agree though that FM is caused by issues with the nervous system. They feel that those with FM will experience amplification of pain due to the abnormal way the nervous system is processing the signal. The newest research is leading in the direction that there may be a genetic predisposition in those who have FM. I expect to see a lot of new information coming on this front in the coming years!

4. What symptoms would a person with Fibromyalgia present with? The main complaints a person with Fibromyalgia usually present with the following: pain, fatigue, and sleep disturbances.

Pain– The pain that comes along with this condition is usually chronic and widespread. It can be felt all throughout the body and may vary in intensity. The pain can be described as stabbing, shooting, aching, throbbing or even as numbness and tingling. Usually people will complain of morning stiffness and abdominal pain until they get stretched out.

Fatigue– The fatigue associated with Fibromyalgia is much, much more than just being tired at the end of the day. This fatigue is an all-encompassing exhaustion that interferes with daily life! It is causes an inability to complete basic tasks.

Trouble Sleeping– Often times many people who have FM also have some sort of a sleep disorder that prevents them from getting a deep, restful, restorative nights sleep! This making the fatigue that much worse!

Cognitive difficulties – Many who suffer from FM will complain of “fibro fog.” Which is also known as brain fog. This is a symptom of fibromyalgia where you feel as though you can not think straight. You may have trouble understanding things, remembering things, or even losing things. All of which can be “normal” with Fibromyalgia. This is a form of cognitive dysfunction that comes and goes with FM.

5. How is Fibromyalgia diagnosed? In 1990 the American College if Rheumatology (ACR) developed classification criteria for diagnosis. The criteria included a history of widespread pain in all four quadrants of the body for a minimum of 3 months prior to diagnosis. It also required that the patient have pain in at least 11 of the 18 designated tender spots. In 2010 the ACR developed new diagnostic criteria that did not rely on evaluation of tender points. Instead focused on the person’s pain being widespread and accompanied with other symptoms like problems sleeping, and fatigue. They also take into account the cognitive issues that the patient may be feeling/dealing with.

6. How is Fibromyalgia treated? In order to effectively treat FM the symptoms need to be treated. Thus treatment is really about symptom management via medications,or other treatment modalities. Medications or other treatments like massage to reduce pain, sleep management and finding ways to lower stress are the main treatment modalities. Exercise and eating healthy, as with most conditions are encouraged to help lower the pain level. A person with FM will also need to discuss the cognitive difficulties they may be having with their provider so a proper treatment plan and recommendations can be made.

This was a quick and dirty way to explain Fibromyalgia, how many people are impacted, the suspected causes of FM, as well as the diagnosis and treatment of the disease. Even with the changes in diagnostic criteria and more research being done, FM is still not fully understood. And treatments often end up being trial by error. One medication/treatment may be prescribed and if that works they will continue it. If not, they will continue down the line trying to figure out what works for each person. And the fact that many will also experience a number of other symptoms and overlapping conditions, like Irritable Bowel Syndrome, Lupus & Arthritis can complicate things. That being said over the last decade the understanding of the disease has increased and they are always working on new medications for treatment of FM. Based on the trends over the last few years it should be expected that there will be big advances in the understanding and treatment of FM. This post just shows more clearly that those who suffer from FM are NOT alone! It also shows that patients need to continue to advocate not only for their own care, and the care of others who can’t advocate for themselves. And more focus needs to pushed through the proper government channels to advocate for more money for research of this condition!

With Love,

Amber

Tips to Help You Get Moving in Morning. 

Those first movements of the morning. You know what I’m talking about. When you wake up and try to move for the first time of the day……. Painful? Stiff? Frustrating? Are these words you would use to describe the morning in your world? They are for me. There are mornings when I wake up and am almost in tears bc I literally can’t straightened or bend (depending on the joint) and extremity! What can we do to help this? What can we do to make our mornings a little less stressful and painful? 
 Tips for getting moving 

1. Take a hot bath or shower. 

2. Avoid nicotine, alcohol or caffeine before bed. These stimulate your brain and can make it hard to get a good restful nights sleep. 

3. Try a morning self massage of the areas that are the most sore. 

4. Try to avoid sleeping on your stomach as it causes unnecessary stress on your low back. 

5. Try to avoid sleeping in cold damp areas as both these conditions can cause increased stiffness in the mornings. 

6. Do light and easy stretches while laying in bed!

7. Drink lots of water! It’s just good for you, period. But it will also help you be less stiff. 

8. Make sure to dress for the season as the extremes can make it harder on your body. 

9. Try to get regular exercise. Even 10min a day will help! 

10. Plan ahead! This one can be very helpful. This can be something as simple as making sure you have plenty of time to get up and around in the morning. 

11. Take your pain medication before getting out of bed. This one will take some planning, especially if you have to be somewhere. Because you will need to give the meds 30min to an hour minimum to kick in. 

12. Use your clothes dryer to your advantage. Before you need to get dressed put your clothing in the dryer on high for just a few short minutes. This will help soothe those achy joints! 

In the list of things that will improve your morning-time stiffness there are a couple catch 22s. The shower, yes it will loosen everything up and make you feel better. But it may also deplete you mr energy tank for the rest of the day. Also, regular exercise. We all know it will help. But it’s another that sometimes you just think “I hurt so bad, the last thing I want to do is exercise.” Or at least I know I do. However, exercise doesn’t have to be aerobics or heavy weight lighting. It could be riding a stationary bike or walking for 10 min. I know that my Rheumatolgist suggest some kind of exercise for at least 10 min a day. Doesn’t matter what it is, just get that badly moving!!  
Personally, my biggest suggestion is to make sure you have plenty of time in the morning. That way if you are more sore than the average day or if you need to jump in the shower to soothe those joints you have time. There is nothing worse than waking up late and having to push through the stiffness simply because you don’t have time to adequately deal with it. 

If you feel like your stiffness in the morning is getting worse or if you notice it primarily in one joint (like a knee), please make sure to contact your doctor and let them know. 

I included this little diagram of a few exercises you can do first thing in the morning to get moving.   


Hope some of these tips help!

-Amber 
Resources:
http://www.everydayhealth.com/fibromyalgia-pictures/7-ways-to-cope-with-fibromyalgia-morning-pain.aspx
http://www.fmcpaware.org/fundraising/176-movement-therapies/907-10-tips-to-overcome-morning-stiffness.html
http://www.healthline.com/health-slideshow/rheumatoid-arthritis-morning-stiffness

The Ins and Outs of Fatigue

Fatigue…… something everyone deals with at one point or another. The definition of fatigue is a lack of energy and motivation. This means anyone can be effected by fatigue. However, fatigue brought on by a chronic illness is like nothing a person has ever experienced. And most people don’t understand this kind of fatigue. It’s the kind of fatigue that makes daily life hard and sometimes impossible. It makes special outings a thing that is paid for for days, not just a fun care-free time out of the house. How do you explain this fatigue to others who think you are just being lazy? The best definition I’ve heard is: If you’ve ever had the flu and been so tired you can’t move, well multiply that at least 20 fold and you will know the feeling of chronic fatigue. Are there more than one type of fatigue? How can you combat it? What can you do to ease the fatigue? Let’s learn a little about fatigue find out what we can all do to ease its effects. Clinically fatigue is divided into three different categories: 1. Fatigue caused by a systemic disease like cancer and immune conditions. With cancer patients the fatigue is usually defined as acute and related to the disease or its treatments. Or a more chronic fatigue in those undiagnosed that often resembles chronic fatigue syndrome. Or it can be classified based on timing. Like with sarcoidosis, which is further divided into morning, intermittent and afternoon fatigue. 

2. Fatigue that one might experience when they have neuromuscular disorders, during normal exercise. Patients who have MS may complain of fatigue. This fatigue is separated into two categories. Nerve fiber fatigue which is based on pathology. And fatigue of disability based on the face they need more energy when dealing with such a chronic illness! And also sleep deprivation caused by the disease or its treatments. 

3. Fatigue that defined as “painful weariness” that generally has no defined cause.
So now let look at how Chronic Fatigue Syndrome (CFS) is different from other types of fatigue. CFS is diagnosed when there is no clear or possible medical conditions present. A person has to meet certain requirements to be diagnosed with CFS. Those requirements are: One must have unexplained, persistent fatigue for six months, or longer along with four of the following issues. Loss of memory or concentration, sore throat, enlarged lymph nodes in your armpits or neck, unexplained muscle pain, pain that moves from one joint to another with no swelling or redness, headache that is new and has increased severity and pattern, sleep that is not refreshing, extreme exhaustion lasting more than 24 hours after physical or mental exercise. Once the diagnosis is made the most common treatments are sleeping pills, antidepressants and therapy. 
Now that we have looked at the kinds of fatigue and Chronic Fatigue Syndrome. Let’s look at what we can do to decrease fatigue in all cases. 

– Pace yourself throughout the day and set your own pace. Try to avoid over doing even if you are having a “good day.” If you pace yourself throughout the day you will hopefully be able to get everything done you want without being totally exhausted. 

– Get moving and exercise. Lack of exercise can cause the muscles more stiff and painful, and make exercise more difficult and tiring. You will need to build up your exercise. You can’t ever go too slow. If you do too much you are likely to cause you other conditions to flare. Schedule your workouts so they become a regular part of your schedule, when you keep your schedule it’s easier to keep doing the exercise. Also, pick a time of day that is best for you. If you choose a time when you are less stiff and tired it will be easier to continue your regimen. 

– Just say NO. Saying no is okay and should be something you do when needed. Try to plan your activities when you are least tired. And if it happens that something falls on a day that you are extremely fatigued don’t be afraid to reschedule. It’s better to reschedule then overdo and pay for it later. 

– Have a bedtime routine. Lack of sleep can cause a person to be fatigued. At bedtime, do whatever helps you wind down. Take a hot bath, listen to soothing music, gentle stretching, or maybe some light reading. And don’t get into bed until you are ready to go to sleep. Make sure the area where you sleep is dark and quiet and at a comfortable temperature for sleeping. Try to end all screen time (phones, iPads, and TV) at least an hour before you are planning to go to sleep. 
Hopefully, after reading this post you can define your fatigue and find ways to decrease fatigue. Always, talk to your doctor if your fatigue is worsening or your current sleep regimen is no longer working. Also, make sure you are doing what you can on your end to fight fatigue and get better sleep. 
-Amber
References: 

http://www.everydayhealth.com/fibromyalgia-pictures/fight-back-against-fibromyalgia-fatigue.aspx#10

Autoimmune Fatigue: The Staggering Symptoms Beyond “Feeling Tired”

http://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/basics/treatment/con-20022009

But You Look Fine…..

We’ve all done it.  We’ve seen that person get out of the car at the local shopping center while parked in a handicapped spot. And thought, “There’s nothing wrong with them, who do they think they are?”  I’ll admit it I’ve thought that. And I think that’s the mentality of most. If you can’t SEE the disease it’s not there. Right?   NO Oh so WRONG!!!! Here’s some food for thought. 

So if 96% of illnesses are invisible that just leaves 4% that one can outwardly see. In 1997, there were 26 million Americans considered to have a severe disability and only 7 million of them use a wheelchair, cane, crutches or walker (U.S. Department of Commerce).  So you can only imagine how that number has increased in the last twenty years with medical advancement.  Chances are someone YOU KNOW has an illness that they are suffering from that you can’t see or may not even know about. 

So what exactly are invisible illnesses? They are conditions that you can not see by just looking at someone. These could be things such as: Anxiety, depression, mental illness, Autism, Chronic Pain, Chronic Fatigue Syndrome, Fibromyalgia, Lupus, Endometriosis, Interatitial Cystitis, Chrons Disease, EDS, epilepsy. Just to name a few. 

So how do they hide their disease and how do they feel? Here’s my story!

You may look at me and simply see a healthy-looking, overweight 30 something. However, just by looking at me you would never know the things I suffer from.  You wouldn’t know I have disabiling migraines, Systemic Lupus, Insomnia, Fibromyalgia, Interstitial Cystitis, Endometriosis, and Adrenal Inssufiency.  None of these things can be seen outwardly. 

You wouldn’t know that I am almost ALWAYS in pain somewhere. Whether it be my back or my hands or even my feet. Something always hurts even on the good days. You wouldn’t know that chances are I didn’t sleep well the night before because of said pain. And I’m so tired that it took 15 extra minutes to convince myself to get out bed. Even after taking my medicine 45 min before finally rolling out of bed.  And then I spent another hour getting through the process of showering, hair, makeup and getting dressed because I had to take 4 breaks. And by the time I’m done with all that, I really just want to get back in bed because I’m EXHAUSTED and it’s not even 8am. 
You won’t ever see me cry because I had to cancel plans for the 3rd time with my best friend. Because that is something I hide. You wouldn’t know that it rips me apart to have to stay home when everyone is out doing their daily activities. You wouldn’t know that grocery shopping is the vain of my existence. And something I have to mentally prepare for because it…..takes….so…..much……energy. And then actually putting the groceries away……that’s a whole different story. 

You will never see my utter frustration with constantly being sick. I’m sick and tired of being sick and tired. Go ahead and think what you will. “She can’t really be sick again, can she!?”  “I bet she just doesn’t want to work so she says she sick!” Let me answer those questions. Yes, if I actually tell you I’m sick. I’m sick. The rest of the time I hide my illness for fear of being judged. As for just wanting to stay home. NO. I would much rather be in the workplace than on my couch. I didn’t go to college for 6 years not to use my degrees. 

By looking at me, you would never know that I may have had a migraine for three days. And am fighting the constant urge to throw up because of the migraine. You wouldn’t know that I might be having a hemiplegic migraine and my hands are going numb, and it’s hard to talk. You might see me in public with my shades on and think nasty things about me, none of which are true. I don’t have a hangover. And I wasn’t beaten up. I simply have a migraine that won’t quit. So don’t be so quick to judge. 

To talk to me you still probably wouldn’t see any difference in me. That is until the Brain Fog hits. It’s a thing!! Much like pregnancy brain or Chemo brain. You probably wouldn’t know that I constantly lose my train thought, sometimes in mid sentence. Or that some days I spend a lot of time looking for things that are right in plain site. You will probably notice me hunting for words while speaking. No, I’m not on drugs, or alcohol. I simply have brain fog associated with my invisible illness. Remember it’s a real thing….. look it up if you like. 

By looking at me you wouldn’t ever know that often my bladder is on fire and I have to urinate all the time. And I may get up four to five times a night to do. Yes at the ripe ole’ age of 31!!   You also wouldn’t know that many days out of the month I have severe pain in my belly. Either caused by the Interstitial Cystitis or by Endometriosis!  The pain can be disabling at times. And I would like to cry and lay in the fetal position. But I don’t! You also wouldn’t know that my chance to carry my own baby is slim to none now due to my invisible illnesses. The one thing I have wanted more than anything my whole life is no longer a possibility. But you can’t see that! 

Another thing you would never see by just looking at this 31yo lady is that the depression can be real. If you suffered from all the things I mentioned above you would probably be depressed too. You probably wouldn’t know that there are days when getting out of bed feels pointless. And crying is the only thing that seems to help.  Anxiety is also real. You never know when you get out somewhere if one of these diseases will strike its ugly head. Then what happens? How do you excuse yourself to head for home? Will I make it home safely? Should I bother my working family to come get me? All things you have to worry about because you never know when you could get sick. 

Any invisible illness can take over your life. And not usually for the good. There are so many struggles. Loss of friendships and family members because they don’t understand. Or don’t take the time to learn. Loss of wages/job because of being sick. And anyone who says getting disability is Easy is so WRONG. It can take years for people with an “Invisble Illness” to get approved. Because just like you the judge can’t see if either. We look fine on the outside.  

If you take anything away from this please thing before you hurl thoughtless, mean words at people. Try to be less judgemental when you see a young person parked in the handicapped spot. He or she probably needs it or they wouldn’t have it. Also, try to be a good friend! And know that even though we may cancel 5 times before we can actually have dinner with you, doesn’t mean we don’t value your friendship. It just means that we are listening to our bodies. Lastly, remember what your Mama taught you. “If you don’t have anything nice to say, don’t bother saying anything at all!”

I hope this encourages others to share the things that no one can see outwardly due to their Invisible Illness. Let the world know what you go through. And others in the same boat know that they are not alone!!

-Amber

What Can You Do to Improve Your Sleep?

Before sitting down to write this I did quite a bit of research to find the best recommendations to improves ones sleep. Things that we all haven’t heard multiple times The best recommdations I found came from Spark People. I will provide the link to the article at the end of this post.  So here we go…. One step closer to better sleep.

When you live with chronic pain, headaches, an autoimmune disease or an old nagging injury from the past it makes it hard to get solid rest.  Which then throws you into the, what seems like, the never-ending cycle of escalating pain and sleeplessness. Due to the fact that when you hurt most of the time you just can’t sleep. 

Pain doesn’t just cause you problems falling asleep and staying asleep. It makes an impact on the KIND of sleep you get when you are able to sleep.  However, sleep has so many benefits for your health, more than just staving off pain.  Sleep has a huge impact on your brain and how it learns, and how it remembers things.  Sleep helps to bolster the immune system, keeps moods stable, and helps to reduce stress. It has been said that sleep can even reduce the intensity and duration of pain. So lets dive into the tips for sleeping better.

– Adjsut your pillow. 

Okay this one may seen silly and obvious, but if you have pain in your neck or back, sleeping on your stomach can actually make the pain worse. Due to the fact that it causes your spine to arch and your neck to twist. Always check with your physician before making any big adjustments to your sleep position.  So how can we change this? Body pillows can help reinforce the changes in position you are making.  One Suggestion is that if you have back pain, sleeping on your back with a pillow under your knees can help the back pain as well as preventing those bony prominences and help keep your hips in alignment.  If you have more neck pain than back pain you might want to consider looking into a an orthopedic or contoured pillow could provide support. It is also important about to think about other places you might sleep. So make sure you have a travel pillow if you fly a lot or are in the car for long periods. 

– Practice Mindfulness 

Do you have a hard time turning your attention away from the pain while you are lying in bed at night? Here are some examples of simple, pain-reducing techniques.

  • Set a timer for about 5 minutes
  • Find a comfortable position and lie down
  • Focus on your breathing. Take notice of your lungs expanding and contracting as you breath in and out for a few moments. 
  • Try to put yourself in a natural frame of mind (I know easier said than done). For some it might help to imagine cares and worries sailing or floating away.
  • Think about your thoughts but do not label them “good” or “bad.”
  • If a negative thought pops up like (I’m never going to sleep because this pain is just so terrible) acknowledge the thought and then put it aside and go back to focusing on your breathing.

– Relieve Muscle Tension

Take time to make time in your schedule for pain-management techniques that work for you. These could be things like a hot bath, an ice or heating pad, or a few moments of focused slow and deep breathing. Common relaxation rituals, such as listening to calming music, aromatherapy (lavender works best for sleep), and relaxing aching muscles to break the cycle of pain and may help you drift off to sleep more easily. 

– Only go to bed when you are feeling sleepy 

A person can NOT will themself to sleep.  In fact, the more you focus on falling asleep, oftentimes the harder it will be to fall asleep.  If you have been unable to go to sleep after 20-30 mins of lying down, you should get up.  Get up and go do something soothing, like knitting or reading your favorite book. 

– Adjust the room temperature

There is no one temperature that will work for Everyone, but as a general rule you will sleep better if you are in a cool environment. 

– Get Strategic 

Sleep hygiene and the habits you follow around bedtime can make a big difference in how well you will sleep.  Below are some suggestions to improve your sleep hygiene and give some examples of things you might want to implement into your bedtime ritual. 

  • Limit environmental noise at night (like a snoring spouse) or wear earplugs.
  • Make your bed just that a place to sleep and to be intimate, not a place for work or media viewing. 
  • Go to bed and get up on a schedule. Seven days a week. (Even on the weekends)
  • Try to avoid long naps especially late in the afternoon or evening. 
  • Limit caffeine &/or alcohol intake in the hours before bed.
  • Exercise daily but not within three hours of going to bed.
  • Limit time spent using electronics of any kind before bed.
  • Try to avoid sharing your bed–or your room– with pets, which can disrupt your sleep.

– Rethink your Attitude

When you are constantly thinking and dwelling on your pain it can impact your life negatively. Thus making it harder to sleep. So try to schedule a fun disctraction, even something as simple as reading a book or favoriate magazine.Doing so can take your mind off of the sleep  and pain issues at hand and make it easier for you to fall asleep. 

– Consider Supplements  

Supplements such as Melatonin which is a sleep promoter may help you get the much-needed sleep without needing a prescription for sleep. If you want to take this route, make sure to check with your physician before starting any over the counter medications. 

– Rule Out Other Underlying Conditions

When you pain is not tolerable,  sleep is virtually impossible  If the other options haven’t worked for you, you should talk to your doctor.  And discuss your daily pain levels and how to balance your day to day function with pain relief. Ask directly about the pain that occurs near bed time and ask if there are any medications that you might be able to use for nighttime pain relief, if appropriate. 

A quick conversation with your PCP during a routine visit can help by ruling out conditions that might be causing your inability to sleep (or sleep well).  This conversation could help rule out sleep apnea and ensure  that meds you are already taking are not interfering with your sleep. 

Sleep has such a major impact on your daily life that it is essential that you are able to find a way to get that good restorative sleep. By getting that good sleep there is a good chance that you will also be able to decrease your pain.  And breaks that no sleep, lots of pain cycle
I hope you find some of this information helpful. It is a little different information that we often times will hear form our physicians. May you be able to find “the spot” and start sleeping a little better.

~Amber

Resources

  • http://www.sparkpeople.com/resource/wellness_articles.asp?id=1841
  • Http://www.spine-health.com/blog/5-little-known-tips-sleeping-chronic-pain 

Sleep….. Why have you forsaken me?

Sleep….. Something many of us really enjoy doing. It’s a good way to pass the time if you are bored. It is how our body refuels itself for the next day. It’s just plain good for us. In fact most doctors will tell you that you need at least 8 hours of GOOD sleep. Good sleep is a whole new ballgame. I’m going to make a generalization here and say that most people with Lupus or Fibromyalgia or many other illnesses have trouble with sleep.  We as a population are the ones who probably need it the most.  Lack of sleep can cause so many problems for all of us. It can cause difficulty sleeping, errors at the workplace. And just plain make you feel like crap.

It seems to me like my insomnia comes in waves. I do really well for awhile and am sleeping at night like a normal person. And then BAM something hits and throws me totally off.  Like for the last two weeks. It is usually 3 in the morning before I can finally go to sleep, and then I only sleep for a few short hours.  It seems like being sick with the flu is what triggered this episode. But it is so frustrating when you just lay there and look at the ceiling and can’t go to sleep.  Lately I have tried everything to sleep. You name it I’ve tried it. Hot baths, soothing music. Something has to change especially if I am going to go back to work soon. I will need that sleep.  So my goal for today is to research methods to help you sleep without taking a sleeping pill. So be watching for that post with tips and tricks to make sleeping easier.  Now it’s time for me to take a nap.  #lifeofalupie

~Amber