Truth vs Helpfulness

There seem to be two common ways of thinking- Judging thoughts and words on ‘truth’, or judging them on ‘helpfulness’ (or usefulness).

Those of us who judge by truthfulness pride ourselves in doing so, we tend to judge others who don’t, hold ourselves to a high standard, and don’t understand why the rest of the world doesn’t do it like we do, or at least wonder why we are judged for doing so. When we say or hear something hurtful, we judge it on its truth first and see being hurt by it as a necessary consequence to the truth. We see people who hold back on telling the truth to avoid hurting themselves or others as weak. That facing the truth of this sometimes-cruel world is strength.

But this gets us into problems, not just with others but also with ourselves. It is easy, with “truth” in hand, to be quite self-deprecating. The truth can be used to defend negative thoughts – not just about others, but about ourselves. In downward-spiral-thinking, fueled by “truths” without any regards to usefulness, negative (and often harmful) but true thoughts remain undefeated.

In some way- this kind of thinking is “small truth” thinking. Take for example the “truth” that in the end, you are “destined to be alone”. Yes, no relationship you have ever had has lasted, each time you were left lonely. But the “big truth” is this: that’s how it works- for you, for me, for everyone. All relationships end- by death or choice. This is how the universe works, how society works, how life works.

Helpfulness (or usefulness) is a tool we can use to see the big truth, and to help us out of our self-deprecating rut. Is it true that after a breakup you are alone? Yes. Is it helpful to feel like loneliness is a punishment made only for you? No.

To punish yourself with small truths while avoiding the big truth is not only unhelpful, but also untruthful. To edit out these bigger truths is as much a white lie as any other.

So the next time you find yourself judging something on truth, ask yourself – is this a small truth or big truth? And how useful are the feelings that surface?

What “small truths” keep you stuck?

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Things that work: Yoga

Yoga is beneficial in a few ways- first it’s a great way to stretch. Having a chronic condition means you likely don’t exercise in the way you use to or at all, and that life in many ways is more sedentary. Combine that with inflammation, achy joints, and muscle soreness and you have an excellent set of reasons to stretch everyday (or even 2-3 times a day).

Second it’s meditative. It’s time to yourself. To draw your attention away from your todo list and the needs of others into yourself and allows you time to reconnect with your body. This helps reduce stress and taking mental breaks will likely improve mental function.

Third it focuses on breathing too. This is another stress reducer, and in turn could reduce the severity of some symptoms.

One of the best things about yoga is that it’s popular. That means there are likely plenty of choices local to you, including gentle yoga which is a great place to start. Even better yet- there are tonnes of youtube videos so you don’t even have to leave your house.  What I like about using youtube videos is that I can choose the length of time you want or have to spend. I choose 10-15 minute videos- which are easy to fit in, easy to convince yourself to do, and I can get in more than one a day that way. They are also a great way to practice poses, find a teaching style you like (by trying out multiple videos), and work on flexibility and stamina without embarrassment (if you are prone to such things).

Here are my favorite videos at the moment:

Gentle yoga when I’m feeling particularly stiff

Beginner yoga for flexibility

Bedtime yoga to help calm me down for a good nights sleep

I should note that yoga does not need any special equipment. You can choose to use a mat, and buy special clothes, and blocks, etc- but you don’t have to. I usually do it on the carpet in my pajamas. After you find a sequence or teacher you like, you’ll figure out what you need to move your practice forward. And it is a practice- you won’t become a yoga master- it’s something you practice your whole life- I like how down to earth that sentiment is.

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Learning to be flexible

“Certainty is fleeting. That is why we must have faith” From the Call the Midwives Christmas special 2015

Instead of trying ever harder to control the future or narrowing what, of life around you, you choose to “let in”, bolster your self-confidence that no matter what comes, you can handle it.

Life never ceases to teach, so never stop learning, growing, changing.

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Garden wrap up 2014

2014 was a brand new year for me garden-wise. Last winter I moved (not just country, but continent)- leaving behind my pots, perennials, seeds, and all.

What my new locale lacked in growing season length, it more than made up for in number of days with sunlight (and warmth!).  But one thing did remain the same- pots! I must have container gardening in my blood, or written on my forehead. I would love to expand beyond containers, but I’ll take what I can get, and this year it was pots on a deck.

This year I tried out new things like rotating crops- when it got too hot for lettuce, in came new plants from local nurseries (I didn’t have time to do seeds this year). I tried eggplant, chillies, and savoury for the first time. I also let my cilantro/coriander go to seed for my spice collection (and it smells soooooo good!) for the first time (it was so easy!).

I also managed to dry and store oregano, froze or pickled any of my chilies that didn’t make it into curry paste, made pickles with the dill, and saved my dill seeds to plant next year.

I also repeated thai basil (which was so attractive all planted together in a single pot in almost a “ball” shape), basil, dill, cilantro, chives, beans (snap peas actually), sage, rosemary, oregano, lettuce, and salad greens. And I also used marigolds again for insects, and tried borage for the first time for it’s ability to attract beneficial insects.

Most things were a huge success. I would love more coriander seed, and maybe even more chilies. I didn’t use as much sage, rosemary, or chives as I thought I would. And the eggplant was too near the end of the season to produce much. I loved (loved!) my basils and will do both again.

What I did learn was how to make the pots visually attractive. I paired short, overflowing plants (like oregano, savoury, thyme) with spindly plants like the eggplant, and will do that again next year (beans come to mind). The ground-cover effect the short plants have also helped keep the soil moist longer (bonus!). Other plants take on a beautiful shape if you bunch a few together in a pot- like the thai basil.

Now is the perfect time of year to reflect on what worked, what didn’t, and what to order from your favorite seed catalogue ;) . What will you be growing in 2015?

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Gratitude- Papa Hank

When you live with a chronic condition, it is easy to loose sight of the good in your life. Constantly battling symptoms can focus your attention inward, and on unhappy thoughts. Taking the time to think of things that are going right, or remembering what you are grateful for can turn your small, pained world back into a larger, happier, and calmer place. In turn reducing stress levels, which in turn reduce the intensity of symptoms or even frequency of flare ups.
Today, I’m thinking of someone very special, who I am very grateful to have known. This would have been my grandfather’s 101st birthday.

I’m grateful for the childhood memories- summers spent in the tree house he would build for us, long walks in the woods, and baseball games on the radio. But mostly I’m grateful for his love. Papa had a special way of viewing the world, sometimes in a way most hilarious, but no matter how much we laughed at his expense he never got cross or held it against us. He could see beauty in the mundane, and had a deep respect for nature- something he passed on to us.

Happy birthday, Papa. I miss you.

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CFS definition- the CDC 1994 definition

There are multiple definitions of CFS/CFIDS/ME. Which not only makes it confusing for patient and doctors, it can make diagnosis difficult, and even affect scientific research. I’m going to lay out the different definitions here, to serve as a guide for those who are looking for more clarity. I’ll start today by offering the definition used widely in the US, and in future posts, I’ll talk about the UK and Canada.

Note: I don’t support or agree with many of these definitions- they are hard to understand, difficult to use as a tool for diagnosis, some were written by the experts in the field while others were not, and some have not been updated for decades despite new research and evidence. I am merely providing you with the information your doctor may be working with, with the hope that you may be able to better communicate.

The CDC (Center for Disease Control and Prevention) in the US came up with this criteria in 1994. Most doctors/insurance companies use this definition when diagnosing a patient. These criteria are also known as the Fukada definition of CFS. You can find the full set of guidelines here: http://www.cfids-me.org/cdcdefine.html

The basics are as follows:

1. The patient must have fatigue that is long lasting (chronic), from an unknown cause (unexplained), and must not be life long (ie not since birth). This fatigue is not made better by resting, and has affected likely numerous parts of your life.

2. For six months or more, the patient must have at least HALF of the following symptoms:

Difficulty with memory or concentration

Sore throat

Tender lymph nodes

Muscle pain

Joint pain (without swelling or redness)

Headaches (that are different from any kind you had before you had CFS)

Feeling tired even after sleeping

Fatigue from physical activity. The kind of fatigue that lasts more than 24 hours

3. The patient should be tested to make sure the symptoms are not caused by another condition. A few are listed specifically:

Hypothyroidism

Sleep apnea

Narcolepsy

Iatrogenic conditions (like side effects of medications)

Illnesses that have been treated but came back such as Hepatitis B or C

Bipolar affective disorders

Schizophrenia

Delusional Disorders

Dementia

Anorexia Nervosa

Bulemia Nervosa

Alcohol or substance abuse

Severe Obesity (defined as a BMI greater than 45)

Routine and further tests should be done to rule out other diagnosis such as Multiple Sclerosis

4. There are some conditions that do NOT rule out the diagnosis of CFS (meaning you could have one of these AND CFS, or your previous diagnosis was wrong and you only have CFS):

Fibromyalgia

Anxiety Disorder

Somatoform Disorder

Nonpsychotic or melancholic depression

Neurasthenia

Multiple Chemical Sensitivity Disorder

Treated Hypothyrodism

Treated Asthma

Treated Lyme Disease

Treated Syphillis

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Personalized gift tags DIY

Crafting is my “me” time. Being creative helps get me out of my head, and is such an easy way to change from thinking about what I can’t do to what I can do.

This year, I wanted to decorate some special gifts with a little extra something. These little clay gift tags don’t require much time or effort. But add that little home-made (aka I spent a little extra time making something just for you) feel!

You’ll need:

Air dry clay

Old cookie cutters

A rolling pin

A mat to roll it on (or just a plastic bag!)

A straw (the kind you drink out of)

And a place to let the clay pieces dry- preferably a wire rack, but a plastic plate works

If you plan on painting them, you’ll need:

Craft paint

Paint brushes

A pencil

Clear sealer/top coat (I went with a satin finish)

To finish it off/optional:

Ribbon

Felt

Pinking sheers (to cut the felt)

How To:

1. Roll out some of the clay to about 1/8″ thick

2. Use the cookie cutters to cut out fun shapes. I used old biscuit cutters for a round shape with a pretty edge. Smoosh any the leftover clay into the remaining clay block, and store in an airtight bag.

3. Use the straw to punch out holes (for the string) – either one on the top, or one on each side

4. Carefully move the clay gift tags to a rack to dry, or put on a plastic plate and turn every few hours until dry (which takes about a day)

5. Draw with a pencil what you want to paint onto your clay tags (you can skip this step, but I suggest it for spacing lettering)

6. Paint – get creative! Let dry and touch up if needed. Let dry again.

7. Paint (or spray- depending of what kind you purchased) with a clear sealer or top coat and leave to dry

8. Add any final touches, and put them to good use on all your Holiday gift packages!

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What works- Vitamins

Vitamins have really helped. Personally, I believe it’s because most chronic conditions have some underlying issue with the gut (which is so intertwined with your immune system they are inseparable). If your gut isn’t working properly, it’s not crazy to make the assumption you likely aren’t taking in enough essential vitamins and minerals (maybe due to lack of proper digestion, or maybe because your diet is restricted or lacking).

I believe that in my case it’s a combination of a very restricted diet (which greatly helps in relieving symptoms but reduces the variety of nutrients in my diet) and a gut that just doesn’t want to work well (that’s an understatement).

But how do you know what vitamins to take? The FDA here in the US restricts what manufacturers of vitamins and minerals are allowed to tell you about what each supplement is good for (and often they have a wide variety of uses). Instead there is confusing and sometimes contradictory information everywhere you turn- most prevalently on the internet.  So who can help you figure out what is right for you? There are some options: 1. Find a more open-minded physician or dietician who knows more about your condition and find out what supplements (s)he recommends 2. Find books written by specialists about your condition that offer suggestions about supplements 3. See non-western doctor who you trust (shop around if you need to)- but herbalists, acupuncturists, and naturopaths are a good place to start your search.  This last option may seem like the craziest option if you were raised to believe that western medicine is the only trust worthy option, but non-western practices will tailor the treatment (in this case supplement suggestions) to your specific needs. That’s because they believe that you are an individual, not a disease, and what your body needs might be different from someone else’s needs- even if you have the same condition.

Personally, I started with the book path. Using books, and not people, meant that not everything I tried was going to work for me, so trial and error has played an important role.  I have adapted and added to my vitamin intake over the years, as my research has led me to new ideas. I then try it from a trusted source, and use my own body to guide me. There have been pills that I didn’t react well too, and I stopped taking them right away. But the vitamins and mineral supplements that do work should have a mild positive effect. They won’t “cure” you overnight. The point is to remove or reduce symptoms, allowing for a fuller life.

In my journey, I started with the book: Hidden Food Allergies by James Braly and Patrick Holford. I had read another book by James Braly and trusted his judgment. I also had researched delayed onset food allergies, and it felt right to me. His list of supplements and what to take them for was a great starting point, and is the reason I take most of the supplements I take now. Once I knew what I wanted to try, I did some research and found ones that were free of my allergies and intolerances. I have had good luck with The Vitamin Shoppe here in the US. Their online store sells their own brand, which clearly labels what is and isn’t in each supplement, and they carry other brands that do the same thing. In the UK, I had decent luck with Holland and Barrett. It’s worth it to “do your homework” and find an option that is suitable to your specific needs- ie gluten-free if you avoid gluten.

In case you’re curious, here’s a list of what I take, and what each does for me. You may have a completely different list, even if we have similar conditions- it’s all about what does work for you.

Supplement name Why I take it Where I heard about it
Glutamine Healing the gut Nutritionist/Dietician
Vitamin C Immune system Book*
Quercetin Allergies (food) Book*
Caprylic Acid Help heal the gut Book*
MSM Pain, especially joint pain Book*
Magnesium Headaches, stress Book*
Vitamin D A blood test showed I’m low My western Dr
Folic Acid Mood Trial and error
Omegas (Flax seed oil pills) Brain, body functions Multiple sources
Primrose oil Calming, sleeping Online
Aloe Vera juice Demulcent (soothing to digestive tract tissue) Trial and error

Book: *Hidden Food Allergies by James Braly and Patrick Holford. 2006.

What works for you?

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Lost

I am feeling impatient with the uncertainty of the time scale and path of my healing. Never know if my experience, thought, idea is a helpful one or a hinderance. If I’m just around the corner, or have years to go.
How can I align goals, aspirations, and even identity with such an uncertain, fluid sense of self?
Feeling a bit lost.

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Feeling stuck

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