Fibromyalgia-things that may help

There are a few things that I have found very helpful over the last few years to help ease or at least distract myself from fibromyalgia pain.

1. hot water bottle
2. ice pack
3. epsom salts in the bath-eases my muscles and helps me sleep
4. tiger balm
5. essential oils
6. a good laugh!

These might not help everybody but they have certainly helped me.

 

How Can Global Warming Help Us?

Sometimes it takes a drastic solution for a drastic problem.  At the time it seems like the solution is the problem.  Cataclysmic, even.

When Monsanto introduced its Frankenstein plants into our environment people wonder if they realized what would happen.  Of course they did.  They patented the genetics of their “products”–they patented life.  They then sued any farmer that ended up having their “product” show up on their farm.  Sued them for a LOT of money, threatened them, ruined them.  Plants are funny.  They are living things, and they tend to play by Nature’s laws, even when we don’t.

Pollen and seeds tend to be made to travel.  That is how Nature made plants to spread.  Monsanto genetically altered plants, and the new DNA has begun showing up not only in new places not originally planted, but through cross pollination.   That’s right–Frankinstein’s dick works, and he knows how to use it.

So what, you say?  Well the genetically altered plants cause all kinds of problems.  They have already contributed to super antibiotic resistant bacteria, poison resistant pests, and herbicide resistant plants.  They also cause health problems like tumors, organ dysfunction, and death.  The geniuses at Monsanto put suicide genes in their plants, saying that that way they would die after being alive one year, and that would minimize the potential threat of cross-contamination.  Great.  Now that gene will spread as well, which makes plants infertile, which means that they cannot make seeds and fruit–you know, our food.

But, you might say, if they have a suicide gene, they won’t be able to spread.  I would answer, yeah, and everything else they have done so far has worked so well.  Guess again.

Did I mention that they have test plots of trees, as well as many other types of farm foods?  Oh, and fish?  Fish that escape into the wild population.  These are freak fish.

I have not done a great job here of really shedding light on this–there are video documentaries that are very intelligent and thorough.  Look for videos on Monsanto, and GMO and BT .  Watch them.  Then you decide.

Global warming may be our only hope, because that may be the only way to wipe out what they have done.

Autoimmune Disorders in Women: What to Look For and What to Tell Your Doctor - InjuryBoard.com - October 24, 2009

Posted by David Mittleman

October 24, 2009 10:00 AM

Here is a daunting fact: one in five Americans has an autoimmune disorder, which occurs when the immune system attacks itself. Moreover, about ¾ of those with an autoimmune disorder are women, or about 22 million women total. However, there is an even more disturbing trend amongst women with autoimmune disorders: 40% of those who are eventually diagnosed with an autoimmune disorder were initially told that they were “too concerned with their health”. Essentially, a large percentage of women with serious immune problems are passed over and told they’re hypochondriacs.

However, armed with some simple information, you could prevent yourself from falling into the category of women who suffer needlessly. In fact, health experts say that the best way to protect yourself is to educate and empower yourself by learning names, risk factors, symptoms, and treatments for the seven most common illnesses women face.

• 1. Polycystic Ovarian Syndrome—the most common type of hormonal disorder among women of reproductive age, and one of the leading causes of infertility. It stems from having levels of androgens, a male hormone, that are too high. The most common symptoms are irregular periods (or none at all), more hair on the face, chest, back and limbs, moderate-to-sever acne, baldness, and rapid and substantial weight gain that seems impossible to control. There is no single way to diagnose PCOS, but your doctor can check your reproductive organs for signs of mass growths using a pelvic or vaginal ultrasound. However, it is your responsibility to first inform your doctor that you have the aforementioned symptoms. Otherwise, the doctor may never know that there is a serious problem because the illness is so easily written off to bad diet, lack of exercise, or other “simple” explanations for seemingly benign symptoms. While there is no cure for PCOS, it can be controlled with birth control pills and Metformin to help regulate the hormonal production.
• 2. Fibromyalgia—doctors aren’t sure what causes this painful disorder, which results in symptoms that include pain, numbness and exhaustion, and often begins in early or middle adulthood. While there is no lab test or physical exam that can find fibromyalgia, doctors can do a tender-point exam, which identifies places in the body that are painful to the touch despite no immediate physical signs. The test is positive if 11 out of the 18 spots tested come back positive. There is no way to cure fibromyalgia, but sufferers can take over-the-counter pain medications to quell the pain. Furthermore, stretching, exercise, and massage can ease pain as well.
• 3. Chronic Fatigue Syndrome—at least 1 million Americans are believed to have CFS. However, doctors are unsure what causes the extreme fatigue that is common to the disorder. Some studies indicate that it could be related to dormant viral infections, hormonal imbalances, and stress. The common symptoms include decreased physical or mental activity that doesn’t improve despite long periods of rest. Loss of concentration and unexplained muscle pains are also common symptoms. In order to diagnose a patient, doctors must rule out other conditions that cause similar problems, such as Lyme disease or thyroid problems. While there aren’t any treatments or cures, Ritalin has been effective in some patients in reducing fatigue. However, the treatment is still experimental.
• 4. Lupus—there are four types of Lupus, however the most common is systemic lupus erythematosus. SLE is a nightmare: a malfunction in the immune system causes the body to attack itself, including wreaking havoc on the skin, joints, lungs, kidneys, nervous system, and blood. Doctors suspect that hormones play a vital role in the development of the disorder, particularly because women are usually diagnosed between the ages of 15 and 45. Overall, lupus seems to strike during or following a pregnancy. The most common symptoms include fatigue, fever, joint pain and stiffness, chest pain, memory loss, and skin lesions. A diagnosis of lupus is confirmed if a patient has at least four symptoms: a facial rash after exposure to sunlight, painless mouth sores, kidney disease, swelling of the lining around the lungs and heart, and low counts of red blood cells, platelets, or white blood cells. While there is no cure for lupus, mild cases can be treated with over-the-counter painkillers. Moreover, anti-malarial drugs have proven useful in stopping the progression of the disease, while corticosteroids counter inflammation in the joints and lining of the heart and lungs. Overall, doctors suggest leading a balanced life since emotional stress seems to trigger episodes of lupus.
• 5. Multiple Sclerosis—MS strikes when the immune system attacks the protective covering of cells in the brain and nervous system. Eventually the destruction of the cells causes a breakdown in communication between the brain and body. Women are three times as likely to develop MS, and most scientists believe there is an environmental link like exposure to viruses or toxins. Classic symptoms include numbness or weakness in the limbs, dull pain, fatigue, and vision problems. Despite these symptoms, it is difficult to diagnose MS and to distinguish these symptoms from others that are related to other diseases like Lyme disease. However, tests for these other diseases can help rule out any other options and ultimately narrow the diagnosis to MS. Currently, those with milder symptoms from their MS are treated with corticosteroids. Other sufferers with more serious symptoms are put on an immunomodulator drug that helps prevent a complete relapse in muscle weakness and other symptoms. Exercise is also a crucial component in maintaining strength, muscle tone, coordination, and balance.
• 6. Rheumatoid Arthritis—RA attacks the lining of the joints through the immune system and can cause swelling, aching and potential deformities. The symptoms are easily detectable: simple activities, such as climbing the stairs or opening jars, can cause tremendous pain. It is difficult for doctors to diagnose RA, however, blood tests can reveal an antibody that is related to RA. Treatments include alpha inhibitors, or drugs that fight the inflammatory proteins. A second treatment is called DMARDs, which help to slow, reduce, and prevent joint damage. Finally, corticosteroids can cut inflammation around the joints, but become less effective over time.
• 7. Irritable Bowel Syndrome—simply stated, sufferers experience serious bowel problems including gas, diarrhea, and constipation, as well as abdominal cramping and pain. Doctors can usually pinpoint the problem by using the “Rome criteria”. In other words, if a patient experiences 12 weeks of symptoms out of 12 months, they most likely have IBS. The treatment is also very simple: eat more fibrous foods. Furthermore, some patients have found relief by using peppermint oil, a natural antispasmodic that can ease abdominal pain.

While most of these autoimmune disorders cannot be cured, they can still be controlled via simple methods. Be forthright with your doctor if you experience symptoms that you believe could be related to an autoimmune disorder. Most importantly, be persistent! If your symptoms bother you and interfere with your daily life, there is probably a more serious problem that needs further attention.

COMMENT:  Posted by Joanne Drayson

October 24, 2009 3:49 PMYou can not rule Lyme Disease out by a blood test blood tests are only about 50% reliable for Lyme being antigen tests.

All the above illnesses mentioned in this article could be caused by Lyme Disease and with those symptoms should be checked out by a Lyme Literate Medical Doctor through ILADS.

Currently our doctors follow the IDSA 2006 Discredited Guidelines, these are currently being reviwed. Presentations shown at the July IDSA review hearing show considerable evidence proving seronegativity and persistent infection. Details on the IDSA website.

Food for Thought: Healing From Within...A Positive Diet & Positive Thinking for Better Health - David Martin, Executive Director, WPA Chapter

“The Doctor of the future will give no medicine,
but will interest his patient in the care of the human frame,
in diet and the cause and prevention of disease.”
-Thomas Edison

That quote is from my recent Arthritis Radio guest’s website … Janet McKee, a board certified Holistic Health Counselor.  Here is an excerpt from my intro to that show:

I don’t know if you’ve seen the iphone commercials – where the tag line in “we have an app for that” … want to order a pizza – we have an app for that … need directions … need to book a hotel – we have an app for that – amazing technology.  It has changed society as we know it … something else that has changed are the levels of stress and anxiety … depression, obesity … overall wellness … are you stressed – we have a pill for that … depressed we have a pill for that – overweight, have pain – we have a pill for that … everything is quick – never enough time and one area that really suffers is what we eat and consume.  Drive-throughs, coffee shops, energy drinks, processed foods, vending machines, microwaves – this has changed society too… and has changed our overall wellness.

I used to think my father was a “fanatic” over what I called his “health foods” … his attention to what he ate and how much of it always resulted in some good-natured jokes as the rest of us stood around with our quarter pounders … he was right.  He was right and is now the healthiest person in my family.  A family that has Rheumatoid Arthritis, Psoriatic Arthritis, JRA, Fibromyalgia, Lupus, auto immune disease,  and more… is there a connection?  If you ask Janet Mckee … you would get an enthusiastic yes!

Considering the pills and the drinks and the processed and fast food we consume — what we should be considering what is on the end of our fork.

Please let me know what you think of the interview on Arthritis Radio. Leave a comment and your personal story.  I should add – Are we suggesting you drop your meds and eat “vegan”?  No… but a better diet, a diet and lifestyle that suits our particular bodies can only lead to feeling better.

On part 3 of the interview we also touch on the power of your mind.  I recently read a book entitled “You Can Heal Your Life” by author Louise Hay.  She has a DVD of the same name and the potential that exists of how our bodies and life can change depending on our thoughts and outlook is simply astounding.  How many times have we awoken to a gray, rainy day not having received enough sleep, dreading going to work, having too much on our plate, not feeling 100% and not looking forward to the day ahead.  We plant the seeds for a miserable day – and that is what we get…  What we expected from the moment we opened our eyes.  What would have happened if we had greeted the day being grateful, thankful for the rain and our work day ahead and thoughts of how we expected to feel good.  A different outcome, I suspect.  Louise Hay has been quoted talking about “waking up and thanking the bed for a night’s sleep”!  Now that is grateful.  The idea has been around for centuries.  I first heard of it as a child and came across the book, “The Power of Positive Thinking” by Norman Vincent Peale.  It’s been most recently brought back into popular culture through books like Louise Hay’s and “The Secret”.  Organizations like Abraham Hicks and best-selling authors like Chicken Soup for the Soul’s Jack Canfield and Michael Beckwith have promoted positive thought for a better life. Our thoughts, expectations, imaginations and life-outlook can have an impacting effect on our health and how we feel.  It’s a journey worth taking.

A better diet, positive thoughts, feeling better… sound good?

Check out the interview! To listen to Arthritis Radio Episode 11: Parts I, II, and III - please visit http://arthritisradio.podbean.com or simply search Arthritis Radio in the iTunes store to download it as a free podcast!

We have recently posted another AFWPA “Rheum for Wellness” blog entry about Janet McKee and the “food for healing” aspect of this topic.

View Ashley’s entry, “Food for Thought: Healing from Within” HERE.

To learn more about Janet McKee, holistic health counselor and drugless practitioner, please visit her website at http://www.janetmckee.com

Thank you, and be well!

- David Martin

Executive Director

Western Pennsylvania Chapter

Spas, concerts and coffeehouses

The fibromyalgia has started to wear me down. I have pushed myself too much in the past week, but every experience has been worth it. Finally meeting my penpal after 15 years and seeing his country – worth every second of the fatigue and pain. The fibro has mostly asserted itself through my muscles and the bone-weary fatigue. My feet are especially stiff and sore; my lower back throbbing. Today I am also fighting a moderate fibrofog – head in the clouds, difficult to make decisions, takes me longer than normal to understand when people speak to me (and remember, they are speaking German and I have been trying to answer back in German…). It has only really hit today. I think the adrenaline of meeting Andreas and his family has started wearing off.

The spa on Friday helped immensely – I would be in worse shape today otherwise. Andreas, Stefani, and I spent a lazy afternoon at a spa. There are spas like this all over Austria. Envision a glamorized swimming complex. Not nearly as simple and plain as American community swimming pools, not as ritzy as American spas, not as big and loud as waterparks – a civilized combination of the three. The spa is situated over natural hot springs. For all the pools, the water is piped in as is, no tampering with the temperatures. It’s a massive complex compared to American swimming pools, yet still manageable. There are three big outdoor pools of varying temperatures, all of them hot. One is a salt water pool. Inside are a number of cold, warm and hot water pools, and a whirlpool (kind of like a hot tub). Rows of lounge chairs ring the pools. People will come for the entire day with a bag full of books and magazines.

We just spent the afternoon there, but by the end I was so relaxed and my muscles had untightened to the point my pain was less than it has been the entire trip. Soaking in the hot water, sleeping on the deck, people-watching…why don’t we have these spas in the States?

I am determined not to let the recent fibro flare impact my last couple days in Europe. I still managed to see a lot today, but I am trying to be smart about what I choose to do. I have had a classic Viennese day in a way that has allowed my body to rest. In lieu of a walking tour, I jumped on the tram that circles the city center on the Ringstrasse as a low-impact way to see and get around to some of the sights. Spent the afternoon sipping a melange (Like an American latte. Don’t ask for a latte or they will give you hot milk) in a classy but comfortable Viennese cafe. Vienna is rightly famous for its cafe culture. These classy coffeehouses are all over the city, holdovers from the glamorous days when Vienna was the capital of the sprawling Hapsburg Empire. Here you can sip a coffee all afternoon, read piles of newspapers and chat with new acquaintances. I found a cafe called the Braunerhof just a block away from the Hofburg. Caught up on the news and listened to waltzes from a live ensemble of musicians.

I also attended Mass at the Augustinian Church in the Hofburg neighborhood. This was an inspired idea on my part – I could sit for a couple hours in the splendor of the church and listen to the music of the organ and choir. This church is famous for putting on a musical Sunday Mass and the choir even sells CDs. Today’s music was from Hayden. I got shivers from the music – here I was sitting in a gloriously lit Gothic church as the heavenly church music of Hayden lifted my spirits, just as his organ and choral music was meant to be heard. Not in a concert hall, but here, in a church as the people celebrate Mass and the Eucharist. One of the most amazing concerts of my life.

Hopefully tomorrow I can start to hit the streets of Vienna in full sightseeing force, but for now, I am living Vienna through her coffee and music, and my body is all the better for it.

America’s sweet tooth

Sugar. Also known as: Brown Sugar, Corn Syrup, Dextrose, Fructose, Glucose, High Fructose Corn Syrup, Honey, Evaporated Cane Syrup, Lactose, Maltodextrin, Maple Syrup, Rice Syrup, Sucrose…I could go on all day, but I think you get the point – we’ve come up with over 50 names for sugar. Food manufacturers love this because they have to list ingredients in order by weight and many food makers use multiple sugars so sugar doesn’t show up so high on the ingredient list.

Thanks Egoscue Portland for a great blog…. Read the Rest of This Blog

Something got me yesterday

Not really bad.  But enough to make it into my dreams.  Since I’ve been diagnosed with FM I’ve had nighttime bears clawing me, lions biting me and a host of weird situations reflecting my sleeping pain.  Last night, my dream hips would not work; everywhere I needed to go (urgently) was like walking through thigh high slush.  Fortunately I discovered a way to get around by sliding backwards on my rear dragging my useless legs along.  That part wasn’t too bad as each slide got longer and smoother until it felt like I was flying along…backward.

Anyway…

What got me yesterday?  I had no obviously big deviations from the diet.  In fact, it was my brother’s birthday breakfast and I entered a restaurant for the first time since starting the Diet Experiment.  I studied my options and came up with the idea of eating before I went and just having tea once I got there.  That worked.

But then Jacob and I got in the van to go home and it wouldn’t start.  Argh… Kevin was home and on his way in a matter of minutes.  Leaving Jake and I sitting in a cold car staring at his leftover box.  I knew there was bacon inside…I could smell it.  So I ate it. (I asked politely first…but Jacob is pretty easy.)

We got home and I felt no ill effects from the single bacon strip.  Okay. So far so good, I hoped.

Dinner planning was for a celebration.  Kevin got notice of not one but TWO parts he’s been cast in!  We decided on steaks.  Beef steaks all around and I skipped the potatoes.  Had a green salad with some new dressing.  It was a vinaigrette with basalmic vinegar and it was organic and the ingredients didn’t list anything really bad.  Except “organic sugar” and “organic spices”.  Kinda vague.

So what was it that got me?  Dietary?  Corn in the bacon processing or maybe the nitrites? Something in that dressing…that tasted so sweet?  Or was it mechanical since I’m working on painting three full sized papers; they are on my dining room table (my studio is too messy) and it’s just the wrong height.  I have to bend over just slightly and reach as I paint.

Well…there’s nothing to do today but stretch it out, stay aware and watch my food.  It’s still only about a 5 or 6 out of 10 but I’m greedy these days.  I’ve had so many great days with pain hanging around a 3 that I don’t like going back at all!  So we’ll see how it goes today.

Brain Based Treatments For Pain Not Previously Available

We are now offering patients unique and previously unavailable treatments for many chronic conditions.  Our three pronged includes: biomechanical, neurological and biochemical assessment and treatment of your health.

Our neurological assessment and treatment of your condition is what sets us apart from other doctors in the area.  The nearest clinic to offer these breakthrough treatments is over 50 miles away, and it just happens to be our other office.

Conditions that have benefited from this type care include:

#1  Chronic back pain

#2  Chronic neck pain

#3  Chronic Sciatica or leg pain

#4: Spinal Stenosis

#5: Failed Back surgery syndrome

#6: Chronic shoulder and arm pain

#7: Fibromyalgia (FMS)

#8: Balance Disorders/Dizziness

#9: Numbness/Burning/Tingling

#10: Migraine or chronic headaches

#11: Hand or foot pain

#12: Restless Leg syndrome

#13: Insomnia/lack of sleep

#14: Tinnitus/ear ringing

#15: Carpal Tunnel Syndrome

#16: Chronic fatigue syndrome (CFS)

#17: ADD/ADHD

#18: Peripheral Neuropathy

To find out if you or someone you know could benefit from our treatment, call our clinic at (828) 324-0800, or email us at drshook@alliancechiropracticcenter.com and schedule your free brain based, neurological examination.  We are only extending this offer until November 1st.

**You must contact us in advance for an appointment due a limited number of available time slots**

A really good day

Yesterday, I had Princess Ramsey over from 11:30 to 8:30.  That’s a long time of babysitting plus to make things harder, she got sick during the day.  Poor baby got so unhappy that she went to hide on the dog’s bed under my computer desk and fell asleep!

That’s the bad news.  The good news is that my energy level outlasted her.  I ate simply and cleanly with a protein shake for breakfast, leftover chicken soup for lunch and a crock pot roast with roasted veggies for dinner.  Snacks were fruit.  Easy, right?  Plus before she got here I did some dishes, picked up a little and took a shower.

It was crazy.

When I was in the shower I lost my balance and fell over.  Yeah, I’m so graceful.  I rammed my back against the facet head.  Ouch.  I immediately panicked because these small falls have caused flare ups that last for days.  But guess what?  No big problems.  It’s sore just where I hurt it but no “pain echo” and no flare.  I just cannot believe the difference.

Some days I want to go on a speaking tour or write a book or something because I wonder how many other people are out there with fibromyalgia that could be helped by eating differently.  It’s changing my life.  Not just back to where I was BF (Before Fibro) but better than I remember feeling for a long time.

I’ve decided to try and focus on the big four; gluten, soy, corn and dairy.  I know I can get away with eggs in small amounts…same with cheese but I’m still trying to avoid these for the most part.  Soy and corn are the hardest because they sneak in the weirdest places.  Like corn in my table salt (dextrose).  And soy in the tuna fish.  But compared to what I’ve been putting into my body for a long time, the idea is “progress, not perfection”.

And compared to how I’ve been living for the past 4-5 years, just avoiding some foods and focusing on others is pretty dang easy.

Hallelujah, can I get an Amen!

Long Time, No Post: a journey through work, school and life during 2009. Pt 2

Days like today remind me why its so important to take my medication on a regular basis.  I’m sitting at my desk and I’m so miserable I can barely focus on work.  Without my antihystamine my hives flare up. I have red spots on my face and arms and its all i can do not to scratch.  Without my antianxiety pill my tics are all over the place. My left arm keeps flailing and my fingers keep shooting out making typing very hard. I try so hard to reign it in so its not noticable but in the end that just makes it worse for me. Without my lyrica, my fibromyalgia sparks pain and discomfort in my fingers, neck and arms. I’m hurting today and I just want to roll up in a ball and cry and not be here. It makes it very hard for me to be the “Kim at work”, with the smiles and the offers of help and the getting my work done on time. I feel out of place, from my hair (can hair really hurt?) to my toes.

The last year has been a hard one for me.  I have been diagnosed with a movement disorder called Choria, which was later changed to Motor Tics – TS.  The medication that I was originally given worked wonders for about three months. After that not only did the movements come back, but they came back more often and in more limbs. My Neuro wouldn’t change my meds so I found a new one who specializes in movement disorders and we are working on finding the right combonation that will work for me. For the most part, we are on the right track.  As long as I take my pills and try to stay unstressed, the large embarrassing arm waves and movements have declined.  They have been replaced by small quick tics by my hand, wrists and fingers, as well as a small one in my face that i noticed yesterday. The doctor feels that this is an improvement though so we’ll see where it goes.  I was also diagnosed with the Fibromyalgia, which explains why I was always in pain and why certain places always hurt when I was touched.  There are a lot of people who do not believe in this disease and find it a cop out that doctors use when they aren’t sure what the problem is. To be honest, i dont’ care if the word or the disease is real. I’m in pain. Everyday. And if they can do something about it, I’m on board. I was crying in bed every night becuase my arms, legs, fingers and toes were on fire with pain, from joint, to muscle, down to the bone I could feel the pain. My Lyrica isn’t at the right dose yet but we are working on it. I was recently told about a Chiropractor that works with Fibro patients and I may look into it.  I long for a time when mixing cookie dough with my boys or even just blow drying my hair doesn’t incompacitate my hands for hours or days.

In the meantime, I have had more blood tests, scans, exams, that one person should have to go through in one year. I heard once that it takes up to 7 doctors and 10 years for a woman, and a fat one at that, to find the right diagnosis and doctor willing to help with compassion. Since I have been complaining about some of my symptoms for well over ten years and I have seen about 7 doctors, I’m thinking they may have a point. I have a good team now though and I look forward to moving into 2010 healthy and heappy.

And my wonderful husband, who was working from home today, is driving in with my pills as we speak. I would never have asked (and didn’t) but he is there for me in amazing ways and so he makes the trip and I could be back on track by this afternoon.

I should mention that its fall now and I am so happy with the weather and the changing colors. I love autumn!

The chill in the air, the smell of wood burning, the colors! Its all something to smile about and I’m glad its something I can focus on when times are harder like today.

Documenting a bad day ...

Owch I’m sore!

Yesterday was a really bad day ok? I tried to write about it but my brain was such mush all i could come up with was “I feel …….”  My fingers struggled to type, my brain failed to compute and my whole body hurt.

I didn’t sleep well, or much, and got out of bed feeling like a sloth. My night time symptoms were still there, all bunched in with some bad-day morning symptoms and i just wanted to sleep. It might have been wise to just take the day off and rest but I had things to do, kids to get to school and besides.. I’m on this “DON’T TELL ME WHAT I CAN’T DO!” kick at the moment where i intend to show the whole world (or at least myself and my trusty sidekick) that i CAN do anything that i want to do! (admittedly, it’s not going well so far)

So i made the breakfast and the lunches, walked the children to school, saw zo to her classroom and spoke to my supervisor about when to start back, all the while concentrating very hard on looking and speaking as normally as possible, even though my brain had turned to mush and I was walking about in a complete daze. Then I walked home and proceeded to make the shopping list. Sounds easy right? On a bad day, nothing is easy. After the exertion of the walk and the ‘acting’, i was exhausted and just wanted to sleep but i had to force myself to sit quietly and focus on writing the list, it ended up something like this:

• bread
• milk
• veg
• dinner x 3
• stuff for lunchboxes
• baking
• fruit

pretty vague huh? I just had to hope for some clarity to hit me before I entered the supermarket. Next was catching the bus and going to the furniture store – more having to speak to people -eek!  What I do on a bad day is to practise over and over again what i’m going to say to people so that I don’t forget. I also think of how the conversation may go so that I have some words ready and don’t go blank when asked a question (how embarrassing) It went pretty well at the furniture store with my pre-prepared words, until right at the end when the store Guy said something that I hadn’t anticipated or prepared for. I don’t even remember now what he said to me but I know that I replied “phew”. This totally made no sense and store guy gave me a very strange look but In my mind, I was thinking “phew” because our transaction was complete and i could leave. Oops, I guess I said it out loud.

Next I had to get the groceries, and I completely wasn’t in the mood. What I really felt like doing was crying, curling up into a little ball someplace and sleeping for ever. My tingly foot was back and along with some calf muscle cramping, was making me walk slow and stupid. I felt as though all strength had drained out of my arms and legs. I did quite a good job of buying groceries, all things considered. It did however take a great deal of focus and concentration, which is just as exhausting as the being vertical and moving about stuff. I crept through the aisles methodically, list in hand, willing my mind not to drift or fuzz and hoping that I wouldn’t bump into anyone I know, lest I be expected to actually form words and make them come out of my mouth.

Amazing – I actually finished shopping just in time to catch the bus! (saving me cab fare home:) and I had bought just the right amount of groceries that I could carry them to the bus stop – just!  I was sitting on the bus feeling rather proud of myself – I had done everything on my list and would be home by 11:30 – when suddenly I smelt a foul smell:( Harry had thrown up all over himself. Harry lives at the nursing home nearby and while he isn’t really that old, he is quite ’special’. Harry often shows me a picture or toy that he has brought on the bus with him, He also coughs when he is nervous and if he coughs too much he throws up. It’s never actually happened ON the bus before, I wonder why he’s allowed out without a carer? Anyway, the smell was putrid and I felt really nauseas and had to make a decision…

1. Get off at the next stop and call a cab (more $$)
2. Get off at P.St and walk a block home (less 15 min, more walking)
3. Do the full loop ( +15 min, dropped to my door)

I opted to get off and walk, which was fine at first but I soon realised that my Groceries were far heavier than anticipated. I ‘carried’ 6 bags, precariously wobbling and stumbling all the way. I stopped 4 times, three to rest and once to rearrange the contents of a busted grocery bag. In the end I was hurting, sweating and silently chanting ‘I can do anything’ as I crossed the finish line!  Bleh, my arms were sooooo sore!  Still, I had groceries to put away, washing to hang and children to pick up, so on I went.

By 4:00, I had fetched the children home, fed them home made caramel tarts (tin of caramel + bought pastry cases + sliced banana = easing of guilt feelings for not home baking for children) and lay on the lounge room rug, dying. Or at least making dying noises. I was hurting bad, my arms and back and shoulders and neck especially were aching and burning and throbbing and stabbing with pain. I was close to tears and couldn’t get comfortable, let alone rest or sleep and I resorted to paying the children in gold (in gold sounds better than 2 bucks) to come and massage their poor dying mother. Usually I would never ask them to do such a thing, but it hurt bad:( Luckily they have been quite competitive lately so they fought over who could massage me the best and the longest.

After an hour rest, I managed to take in the washing, cook dinner, and ‘bake’ some muffins (but mostly spray the kitchen with muffin mixture off the electric beater) with a whole lot of help from my wonderful girls (this time for free;) -they even helped me to do the dishes and went off to bed happily, insisting I go take a bath. THE BATH – yum. I figured if taking magnesium supplements was helping my muscles then soaking in the stuff must be good right? And it was sooo relaxing and I went straight off to bed feeling much soothed.

Now to today: I still didn’t sleep well. What’s new;) and I woke up feeling VERY VERY sore and sick but my brain is less mush today (I can mostly make and say words:) My back is very sore from where the girls rubbed it, It hurts to lift my arms, my legs and feet are very sore and I have a sore throat and sniffles but I am feeling somewhat more positive. On a bad day it is so easy to slip into doom and gloom thinking, worrying about the future, worrying about when I’ll feel well, how I’ll get things done. It frightens me a lot when I have trouble thinking and doing the simplest things, I feel like a little old lady, like i’m past my best; and that’s a depressing thought to be having aged 31.

I try to educate myself and read all I can about Fibromyalgia, M.E and Hashimoto’s but sometimes it serves only to frighten me more. Yesterday I read about women in their 20’s and 30’s who have given up work and driving because of these conditions, people who need help to shop and do housework, people who are housebound and can’t even go on holiday.  I read about studies that show chronic pain like fibromyalgia causes brain shrinkage resulting in more often brain fogs and lowering IQ, It makes me very sad and scared and all at the same time I am struggling to explain to those around me just how I am feeling. Because it doesn’t show on the outside, people have no idea what it’s like to live in this screwy body of mine, how much pain and weirdy-ness can be going on while I appear and strive to look ‘normal’ on the outside.

I don’t want to constantly whinge about the things my body is doing to me, but at the same time I wish there was someone else who understood, who asked, who cared. It’s lose-lose;) anyways, enough wah wah wah, time to finish up with some positives:

• today I completed my much hated subject ‘legislation’, assignments x3 done!
• washing is done!
• kitchen is cleanish.
• bathroom is clean and cleared out ready for painter tomorrow.
• I have wonderful children x2 who think i make the best caramel tarts and muffin/scone/thingys ever!

m:)

I keep thinking of that saying

“hope for the best but plan for the worst”

- I haven’t decided if i like it or not yet, kinda scares me.

And the Fibro Finally Rears Its Ugly Head...

I arrived in Krakow on the night train from Budapest this morning, feeling a bit groggy and disoriented, but otherwise in great spirits. Found my hostel, got some breakfast, and strolled around the Stare Miasto (Old City) a little before the mad rush of tourists. Felt perfectly normal tired. Then it hit. A severe exhaustion and unbearable lower pack pain. 20 minutes from my hostel. In the middle of my wanderings of Kazimieriz, the old Jewish Quarter. Frankly, I am ticked off. (That’s the nice version – keeping it family friendly for everyone back home.)

I debated continuing with my sightseeing. There was a free 3 hour walking tour of Kazimieriz I desperately wanted to go on. There was a period film being shot in Market Square. I hadn’t even peeked inside the huge St. Mary’s Church yet. I debated, and realized that pushing myself today would mean bedridden tomorrow. So napped for 2 hours and now here I am, feeling slightly sore, but much improved. The lesson – ALWAYS listen to your body, even if you don’t have fibromyalgia.

A couple things of note: In Budapest, before catching my train, I visited the House of Terror museum on Andrassy ut. A somber way to leave a new favorite city, but I am glad I checked it out. It is housed in the former office and prison complex of two notorious agencies in Hungary: the Nazi-supported Arrow Cross (much like the Gestapo) and the Soviet-supported AVH (secret police). Here the people of Hungary were terrorized, tortured, and disappeared into the night. Just walking into such a building gave me the chills, but the exhibits furthered my horror. An impressive array of artifacts, photos, video footage, and art installations with powerful messages. For example, a maze of walls made of bricks of pig lard in a room about the shortages and rationing Hungarians experienced under Communism. Wandering the maze to find your way out, you contemplate all the invisible mazes they had to go through just to get the basics for survival. Another exhibit showed the two uniforms of the Arrow Cross and AVH back-to-back and spinning slowly, demonstrating how the secret police switched sides, or “turncoated”. Most powerful to see were the actual rooms used to imprison and torture Hungarians citizens. It is estimated that 1 in 3 Hungarian families had someone killed, tortured, questioned, or imprisoned by these organizations.

You may ask, “Why visit such a disturbing museum on your vacation?” I reply, it is disturbing, yes, but as members of the human race where we have perpetrated countless horrors on each other, it is important that we are witness to what happened, that it make us uncomfortable, and cause us to ponder and questions what happened. It is also an important piece to understanding the Hungarian people today.

On that disheartening note, I will head back out into the city. Krakow awaits my full attention and my back is at least 30% better.