Sleep Deprivation Torture

Being a relative newbie to the FM world, I don’t know if this is normal or not – but it seems to be that EVERYONE is discussing sleep…or lack of it, to be more precise. Is this a seasonal cycle? Or is it just coincidental that we ALL are suffering from (and discussing) sleep deprivation right now?

So what happens to our bodies when we don’t get enough sleep?

Dr. Rafael Pelayo of Stanford University’s Sleep Disorder Clinic doesn’t mince words:

This is what happens to your body if it’s deprived of sleep:

• You have problems with memory and concentration.
• You have problems finding the right word.
• You get irritable – you think so?
• Neurotransmitters in the brain become altered.
• You become more susceptible to infection.
• At its extreme, sleep deprivation can lead to death.

Depression and Low Self-Esteem

Sleep-deprived people have longer illnesses, more severe depression, and greater fatigue than those who aren’t sleep deprived. Other studies link sleep deprivation with self-esteem problems. Getting good sleep and curing insomnia helps to fight depression and increase self-esteem.

Weight Gain

If you’re losing sleep your body mass index (BMI) is likely to increase, and so is your waist circumference (hey! where’s the part about my arse?). According to Professor Francesco Cappuccio of Warwick Medical School, your risk of becoming obese is almost doubled.

Sleep deprivation increases appetite through hormonal changes. Specifically, more of the appetite-increasing ghrelin is produced when you’re not getting good sleep; less of the appetite-suppressing leptin is produced. Sleep deprivation causes you to eat more.

Physical Appearance (other than weight)

I can’t believe that I’m publishing this photo – but please, tell me my appearance isn’t changed because of those big black circles under my eyes!

Despite study participants being convinced that their looks were affected by their lack of sleep, Alex Gardner of the British Psychological Society and emeritus Professor of Dermatology Ronnie Marks of the University of Wales found that sleep deprivation did not alter study participants’ physical appearance – tell that to the black suitcases under my eyes! Nonetheless, the study participants who were sleep deprived felt self-conscious about their appearance and thought their skin showed their lack of rest. Getting good sleep makes you feel better about yourself — but doesn’t change how you look.

Memory Loss

Dr. Jeffrey Ellenbogen of the Harvard Medical School found that “sleep protects memories from interference.” The more quickly you fall asleep after studying for a test or learning a new skill, the more likely you’ll remember it later. If you learn new information and then go about your daily business, you’ll have about a 44% lower chance of retaining what you’ve learned. This research could be particularly helpful when you’re learning a new job. Getting good sleep helps your memory, while sleep deprivation damages it.

Intellectual Impairment

Researchers at the University of Virginia have found that lack of sleep can impair IQ and cognitive development. Sleep helps to organize memories, solidify learning, and improve concentration. Getting good sleep increases cognitive ability and the ability to relate to others.

Physical Impairment

According to the National Sleep Foundation, your body suffers when you don’t get enough good sleep. Your coordination and motor functions may be impaired, and your reaction time may be delayed. You could have reduced cardiovascular performance, reduced endurance, and increased levels of fatigue because of sleep deprivation. Tremors and clumsiness can also result.

Immune system

It doesn’t seem fair… Right when you are exhausted after a stressful move or a big project at work, you come down with a cold. That’s no accident – sleep is essential to the immune system. Without adequate sleep, the immune system becomes weak, and the body becomes more vulnerable to infection and disease.

Nervous system

Sleep is also a time of rest and repair to neurons. Neurons are the freeways of the nervous system that carry out both voluntary commands, like moving your arm, and involuntary commands, like breathing and digestive processes.

Recent studies have suggested that sleep downtime of the brain, so active during the day, may replenish dwindling energy stores that cells need to function, repair cellular damage caused by our busy metabolism, and even grow new nerve cells in the brain.

Hormone release

Many hormones, substances produced to trigger or regulate particular body functions, are timed to release during sleep or right before sleep. Growth hormones, for example, are released during sleep, vital to growing children but also for restorative processes like muscle repair.

Sleep deprivation can be dangerous not only to you but others, since it affects motor skills like driving. Chronic sleep deprivation is also thought to cause long-term changes to the body, which contribute to increased risk for obesity, diabetes and heart disease.

When you continuously don’t get the amount of sleep you need, you begin to pay for it in daytime drowsiness, trouble concentrating, irritability, increased risk of falls and accidents, and lower productivity.

So when is some-one going to help us?

Related articles

• How Does Sleep Deprivation Affect You? (mattress-find.com)
• How The Brain Becomes Impaired By Sleep Deprivation, Leading To Improper Food Choices (medicalnewstoday.com)
• Sleepy brains drawn to junk food (thechart.blogs.cnn.com)

Chronic Comic 93

My Face of Fibromyalgia

A long time ago (but what was actually March), I was messaging another FM page person (Fibromyalgia Wellbeing) about promoting awareness within the community. At the time I was very hesitant about putting my face with the condition and she wanted to promote her book (which is actually being launched July 14^th at the Walkerville Town Hall at 10:00am).

I tried to contact all the current affair shows and lots of print media, with no response. I had attached a purely factual account of FM and perhaps that did not have enough appeal.

So, now, I have attempted to contact the print media again (I’m a bit scared of TV right now) with my own story (all I want to do is get the word out there!) – and I have already had some interest shown.

Now, if anyone has some media contacts, here is what I sent them (and what you could pass on, if you don’t want to share your own story:

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Fibro-My-What?

Me – prior to breakdown/depression

In 2010, I was about to turn 40, single and about to embark upon an illustrious career in law.

Prior to this new life, I had worked in hotels, at Crown Casino, on cruise ships and then back to Crown. While I was at Crown (the second time), I spent 6 years working (in the ‘real’ world) and studying (in ‘academia’) to get my law degree. About halfway through my studies, I had (what I call) a major breakdown.

I stopped working – I was broken. No getting out of bed. No getting in the shower. No getting dressed. I was depressed. I had depression. It took about 3 years to swim out of those murky waters (with lots of drugs acting as my life-preserver – and definitely no photos from that time!)

With the help of my family, drugs and counselling (& some photoshopping for wrinkles) – graduation!

For some reason the only thing that kept me going was my studies. Maybe it was the opportunity to start a new life, to get away from shift-work, or to live within the mainstream – but whatever it was, my studies saved me (I was never suicidal. I always thought that it had to get better than THIS otherwise how did other people survive. My psychologist said I was a very positive depressed person!) and I made it through.

I was able to ‘practice’ law for one whole month before the debilitating purple wave took over my life – FIBROMYALGIA!

Fibro-My-What?

I had never heard of it, either. But this isn’t some exotic, rare condition. This is a condition that affects between 2-4% of the population – most people (and, unfortunately, doctors, don’t know what to call it). It affects more women than men, and more adults than juveniles.

Fibromyalgia (FM) is a collection of signs, symptoms & medical problems that occur together but are not related to a specific, identifiable cause…which makes this disorder so incomprehensible to many, and so frustratingly cruel to those who have it.

The symptoms of FM vary a great deal. People with FM often suffer from varying degrees of muscular pain, stiffness and fatigue.

The pain of FM is usually described as aching, throbbing or burning and is unpredictable in nature. Its severity varies from day-to-day and different parts of the body tend to be affected at different times. Symptoms include:

• Pain
• Fatigue
• Stiffness.
• Headaches
• Jaw and/or facial pain
• Abdominal Discomfort
• Numbness and Tingling, also known as “paresthesia”,
• Cognitive Disorders
• Disequilibrium
• Environmental Sensitivity

Fibromyalgia Syndrome is often described as the ”Irritable Everything Syndrome” and increasingly, additional symptoms  and syndromes are being associated with FM.

One of the first things I did when diagnosed with a ‘probably fibromyalgia’ was get on the internet – leading me to blogs, medical pages and associations. Although, disappointingly, there was nothing I could find in Australia. Historically, FM has been considered either a musculoskeletal disease or neuropsychiatric condition. As such, it falls under the umbrella that is the Arthritis Foundation, despite the Foundation being ill-equipped to deal with the multi-faceted problems that arise from the condition.

Prior to any diagnosis, FM sufferers receive all kinds of comments from family, friends and even doctors: ‘It’s just you getting older,’ ‘it’s all in your head,’ ‘do you really think there is something wrong with you?’ Even after a diagnosis, which itself takes a long time and an exorbitant amount of money, as a FM diagnosis involves at least 3 months of pain and the exclusion of everything else so sufferers must be tested for everything beforehand, many health practitioners are unwilling to consider this condition as a REAL condition.

At this stage, those that do believe that what you are suffering is REAL refer you to a rheumatologist. Yahoo! Finally we get a diagnosis – however, there is no cure. Nor is there an acceptable amount of pain relief.

Notwithstanding that I take approximately 14 medications each morning, that I have a Bachelor of Laws (Honours), that I have a Diploma of Business, and that my brain thinks I can do anything, I am writing this from my couch. There is no word for the fatigue that I feel throughout my entire body. My ankles and wrists feel swollen and at least twice their size, despite no outward change. My face, head and neck are throbbing from some unknown pain. And I am sitting in the dark because the natural light is killing my eyes. So, no, sufficient pain relief for a FM sufferer does not exist.

Mind you, this is not every day – sometimes there is respite from many of these symptoms (although never all of them); however, it is impossible to predict when these better days will happen. This can make it impossible to hold down a job. What kind of employer wants some-one who cannot be relied upon to turn up at every shift. Chronic illnesses are fickle. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, and the next I’ll struggle to reach the kitchen.

So what do people like me do?

Making a phone call is an energy-consuming activity that requires a rest afterwards. In fact, most things require a rest afterwards. We clean our homes in stages because it is too hard to vacuum the whole place in one go – even though I only live in a two-bedroom unit. We incorporate gentle exercise classes such as, hydrotherapy, yoga, tai chi for arthritis, into our lives (for those that can afford it). We grieve for the person we used to be. We try to maintain relationships with people around us – even though, most of the time, we have to cancel any plan we might have made.

I am currently on Sickness Benefits, which gives me almost $500 every fortnight. Should be able to live on that, right? What about when your medications cost about $250 per month, and your mortgage/rent needs paying, and your doctor has a gap of over $150? Then what?

The Disability Pension is slightly more but I was rejected. I was told that my condition was not completely diagnosed as I had further doctors’ appointments. I am currently appealing as those extra appointments were made by me because I do NOT believe that this is the best that medical science can do for me. It is almost like Centrelink wants me to give up totally before they are willing to help me.

Don’t get confused – I am not a permanently-complaining, miserable old cow! You need to understand the difference between ‘happy’ and ‘healthy’. When you’re sick, you probably feel miserable, but you also know that it will pass. I’ve been sick for so long that I can’t afford to be miserable all the time. In fact, I work hard at not being miserable. So I can and do sound happy a lot of the time; but this means that I’m happy – it does not mean that I am well. I may be in pain and sicker than ever.

I have a limited amount of energy to expend. I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realisation that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. I am NOT giving up. It’s just how life is when you’re dealing with a chronic illness.

Fibromyalgia is a chronic condition. This means that it will last a long time – perhaps forever.

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So, that’s it – I really don’t know what else to do at this stage; as I am feeling quite down because most of my efforts are hitting a brick wall. I know that WE know about FM – but WE need to get THEM to know.

It’ll all look better tomorrow.

Related articles

• The REAL Fibromyalgia Awareness Video (fibromodem.wordpress.com)
• Staying Aware… (fibromodem.wordpress.com)
• FIBROMYALGIA – What is really going on? (drkennethorbeck.com)

A (Rei)Ki to Effective Pain Management

I have a friend who I met at high school. We weren’t great friends then, but I knew her. When I started working at the casino, I met up with her again. For a while, she seemed to be more friends with my brother than me. She was always very relaxed, laid back and also on a different shift to me. We’d go out now and then but I don’t think it was a major relationship in either of our lives.

Now, we have both left the casino; and I have eagerly embraced her yoga-teaching, reiki-practising, kinda-hippy, relaxed friendship. She is a wonderful addition to my support network – she offers unrivalled understanding and support; she reads all the things that I send her about FM, my blog and my Facebook page (unlike most of my family); and she puts up with shopping trips with me (even though she HATES shopping!)

This friend, I have mentioned a number of times, is Thais. We keep talking about having regular yoga and reiki sessions, except that each time she comes over, we get distracted. I have no idea by what; I guess it’s just stuff that friends talk about.

But sometimes, and not often enough, she treats me with reiki. Reiki is a treatment in which healing energy is channelled from Thais to me, to enhance energy and reduce stress, pain, & fatigue. It is supposed to work by opening up a channel between healer and patient to transfer energy, and restore the body both physically and mentally.

By ‘laying on hands’ on specific parts of your body or even just positioning hands slightly above your body, a qualified Reiki practitioner can help bring relief to your chronic pain and make you feel better than you have in years. It is an ancient Japanese technique, also called ‘biofield’ therapy.

During a reiki session, muscles are relaxed, and energy flow is unblocked. This helps reduce physical tension and pain. Anxiety and stress also are reduced, helping to unblock and release emotional pain. Although you may not be completely pain-free, you feel relaxed, refreshed, and better able to cope with your condition.

A number of reiki clinical trials was recently reviewed by the International Journal of Behavioral Medicine, which concluded that there was strong evidence that biofield therapies help reduce the intensity of pain in general.

No serious side effects or risks have been identified in the medical literature on reiki, and it is considered to be a very low-risk intervention. Since reiki is facilitated either with a very light touch or with no touch — slightly off the body — it provides a therapeutic option for those who are in pain or unable to be touched – that would be some of us.

Sounds too good to be true? I can only tell you about my experience. When Thais and I do finally get round to trying some out, I always feel deeply calm and relaxed (in fact, we want to try to reiki me to sleep one night and see if it helps with the quality of my sleep). I don’t know if this is just because Thais is a calming influence to be around at any time, or if she is actually channelling her energies into me.

Has any-one else had some experience with reiki? Perhaps with a practitioner that they did not know personally (for a less biased opinion)?

Related articles

• Is Reiki a Reality? (mindbodyintegration.wordpress.com)
• Lesson Four ~ Reiki Treatments (sensualblissvoyager.wordpress.com)
• What is Reiki? (celestialhealings.wordpress.com)
• Reiki….What the – ? (livingeverydaywonderful.com)
• Reiki & Me (cosmictuesdays.wordpress.com)

Chronic Comic 92

Loneliness is the Most Terrible Poverty

I’ll admit that sometimes I like to just hide alone in my little house and be by myself – because (beyond the physical) living with the emotional pain of trying to cope with FM can be exhausting. And, sometimes, I don’t want to put on my happy face; I just want to sit, in silence, and brood.

But whether you’re all alone, by yourself like me, or all alone and surrounded by people who don’t understand, living with FM can feel total isolating.

There are plausible reasons why living with FM makes it seem like you’re living on the peripheral of life:

• An Invisible Condition. FM is an intensely painful experience for us, but it is invisible to those (especially those who aren’t really looking) around you.
• Trauma. FM, whether set off by a traumatic event or not, is a trauma in itself. It is like a permanent fight-or-flight setting, and when your whole system is set to trauma response, it’s hard to invest in relationships.
• Altered sense of self. Chronic pain can change the way we relate to ourselves. If the relationship with ourselves is disrupted, you’ll see ripple effects in all your other relationships.
• Other people’s reactions. Living with FM often means becoming accustomed to the people around you telling you that your condition is “all in your head” and that you should “snap out of it.” But you know what you feel is real, and being misunderstood and judged isn’t conducive to happy relationships.
• Practical barriers. Pain, fatigue, and related problems such as sleeplessness and mood changes can make it difficult to show up at social events or even work up the energy for a phone call. It makes it very difficult to do the things you want to do. You can never make plans, as you never know how you are going to feel from day to day. These barriers cause isolation and may even lead to depression.

Connecting with supportive people, although not always easy to find, can help us overcome these emotional side effects.

The Ultimate Relationship Dream List

1. Working with a doctor who understands fibromyalgia and is keeping up with cutting-edge research should lead to effective treatment approaches — perhaps medication, lifestyle changes, or alternative therapies such as acupuncture.
2. You want a variety of relationships, and spending time with others who have FM could ease some of your isolation. There may not be others within your physical proximity but you can establish cyber-relationships by joining on-line support groups that meet your needs. My Facebook page may not be your sort of thing, but at the bottom of this page is a list of other support groups that you might want to explore.
3. Don’t engage with the people who say FM is NOT real – although you can’t cut off your family, you can limit the time you spend with those who refuse to acknowledge what you’re going through.
4. Whether it stems from living with FM or has another cause, depression is a common coexisting condition. Depression treatment or stress-coping skills should be part of your treatment plan and will help ease loneliness as part of the healing process.
5. Don’t forget to give yourself time to see results – forming relationships takes time. As your emotional distress eases and we find ways to manage our stressful relationships, hopefully we will start to feel less isolated.
6. And, lastly, believing you will be trapped forever in an incurable, painful condition can be a self-fulfilling prophecy. So if that’s your mind-set, it’s time to start building a support system of doctors, nurses, friends, and family. This network will help you cope with and manage your fibromyalgia symptoms more effectively so you can get back to the life you deserve.

Chronic Comic 91

A Plan Goes Awry

It has finally dawned on me…remember that my GP, Mommy and I are using me as a lab rat for my treatment plan. This could be the reason that I’m feeling worse (inside, not necessarily pain-wise) than I ever have before (except perhaps after an operation where a knife-wielding surgeon has carved up parts of my body)!

The plan is/was to replace Sertraline AND Lyrica with just Cymbalta:

1. maintain Lyrica dosage – 150 mg am & pm (til step 6);

No problem with this part of the plan.

2. stop taking the Prednisolone;

No problem here, either

3. Wean off Sertraline over the week;

Slowly becoming more irritable (or so I have been told!)

4. no anti-depressant for one week;

Really irritable, some collapsing on the floor in tears, really tired – this would be when I posted the SQUISH picture, and started the Things I Have Lost series

5. 4 weeks of 30mg Cymbalta;

No real help on this minimal dosage, still really tired, not quite as much crying, can’t be bothered with much, lots of pain EVERYWHERE! – and that would be The Mess That Blubbered

6. 4 weeks on 60mg Cymbalta – NOW:

Not impressed with Cymbalta as an anti-depressant (not even up to the FM dosage yet), feeling nothing but exhausted ALL the time, really noticing temperature changes within my own body

So now, I’m supposed to increase the Cymbalta again while reducing my Lyrica but I really can’t see how the Cymbalta is going to help me with pain management when it can’t even cope with the depression in my body, and it appears to be making a lot of symptoms worse

And I’m just not sure where to go from here…

Chronic Comic 90

No Word for It!

I am exhausted (I know most of you are, too – but I’m going to tell you about it anyway), so exhausted that there is no word for it (no matter how much we discuss it).

Today, I organised myself some time so I could sleep in – it didn’t work. I woke up at about 7am and tossed and turned for a couple of hours, just trying to make myself go back to sleep. I finally gave up and moved to my couch, where I immediately felt like I could go to bed forever.

So, sitting on my couch with my tummy grumbling, I don’t even have the energy to think about, let alone making, something for breakfast. Hopefully a row of chocolate will boost my sugar levels enough to even consider food.

Just as I have heated up the last of special lactose-free milk for a hot chocolate (oops! more chocolate!), the delivery men arrive with my new washing machine, dryer and microwave. Yippee! Excitement plus! Beautiful, sparkling white appliances! So, out into the rain to open the garage so the guys could reach the laundry the easiest way possible. Out goes the old washing machine – leaking water then entire way back to their truck, so, whether I feel like it or not, it’s time to clean the laundry floor. OK, so I just sort of moved the mess into the kitchen to clean up later. No problems with dryer and microwave installation.

Taking a seat back on the couch, I hear Mommy’s car horn honk. Grab my bag, look around the house for anything I may have forgotten (does everyone else do that?) because I have always forgotten something, whether I can work out what it is or not. Now, it’s off to the supermarket – all the essentials and now I need to buy special front loader washing powder. And then, home, thank God. I feel like I’m about to die. Gravity is pulling my body to the ground, my head has stopped thinking even the most basic thoughts and my whole house is a mess!

My shopping has been dumped in the kitchen. There is a huge pile of paperwork and folders (to do with establishing a charity) to collate in the middle of my lounge-room floor. Bags of unwanted stuff litter the floor, to go to the Op shop (which closed early – I walked up there – Bummer!) There’s a couple of bags of returned stuff (no idea what) from Mommy. The point being that I have to clean all of that up before bringing out a broom and vacuum cleaner.

So, once again, I am sitting on the couch, trying to work out where to even start. I also know there’s a tonne of clean washing in my bedroom waiting to be put away (but I can’t actually see that from the couch, so I don’t need to deal with it right now).

Now I know, as tired as I am, I can only do a couple of these things. The most important is the floor and vacuuming – but, of course, I can’t get to it through all the other stuff. So, here I remain, trying to decide if it’s worth doing the other stuff, while I’m so tired, when it’s not going to make a big difference (compared to the floor, anyway).

I can’t even make that decision – and now it’s dinnertime. What am I going to eat?