Tensions, Accepting Life as it is

The tension of chronic illness, aside from any symptoms, is the desire to fight it and the need to accept it.

I’ve been reading Simply Tuesday: Small-Moment Living in a Fast-Moving World by Emily P. Freeman.

It has been a breath of fresh air.

Freeman speaks of fighting the city builder within and nurturing the bench sitter instead. The bench sitter is the one who sits in the moment. Who sits with others in their moments, a witness, not a fixer. Who allows themselves to process their own moments.

Frequently I’ve had to combat my runaway desire for achievement, to reorient myself to what success means for me.

More recently my challenge is to accept things as they are. Accept my body as and where it is. Accept the day as it is. Not to stress over it.

The yoga instructor who helped me to create a sequence reminded me of it, accept your body where it is. (Not where it used to be).

I’ve been trying to take stock of my actions and reactions. Just notice.

And to increase my time to relax and release.

No Tiny Mission here, just an attitude adjustment and a commitment to take all practicable steps to reduce stress in my life. And to try to be more accepting.

Tiny Mission Gluten-Free Conclusion

“It may be what I am including, rather than what I am excluding that is making the difference.”

I suggested this in my first post about my Tiny Mission turned huge mission and it resonated with a few people.

I have finally completed my two month experiment being gluten-free. (And the first sentence is a spoiler!)

It’s been an exciting journey. Lots of good things have come from it.

I have been battling candida for several months, culminating in prescription antifungals (three weeks into the experiment) and a recommendation for taking probiotics permanently. Just before this, a rather bad flare up manifested itself, lasting for two weeks.

After 60 days gluten-free, the only difference I noticed was a slight reduction in the brain fog, the filmy cloud that hangs over my brain.

At day 40, I was experiencing less bloating, I am not sure whether it was the food, the antifungals or both.

I lost 2 kilograms and put 700 grams back on in the first three weeks. I ended up 1.5 kilograms lighter than when I began – this is my pre baby weight! Yay!

At day 50, after four days of an upset, bloated tummy with immense hunger, I decided to listen to my body when it demanded gluten. I had a little wheat flour over two items, two days apart.

After day 60 I gently began reintroducing most glutenous grains. I am still too scared to try oats again after an intense reaction at week two.

I have had no negative reaction to gluten so far.

I am going to focus now on what I am eating. I will nourish myself in the best way possible and I believe that includes a diet high in vegetables,  fruit,  whole grains, meat and dairy alternatives (for the most part).

Gluten-free goodies
Gluten-free goodies

It was a good experiment, unfortunately gluten wasn’t my magic bullet, but it did help me to examine my eating habits and encourage me to be wary of too much of anything.

Tiny Mission Gluten Free – Part One

Alongside my coQ10 Tiny Mission (which is a long one), I’ve been looking into dietary changes.

I slid, rather than dove, into my gluten free experiment.gfree

After some recurring problems with candida, I had mostly given up bread already (which was most of my gluten battle).

I had circled the gluten free idea for ages. A naturopath suggested I give it up. Research and blogs of fibromyalgia/CFS warriors suggested the same.

Here’s a few links about non-Celiac gluten sensitivity:

Is Non-Celiac Gluten Sensitivity a Real Thing? 
Symptoms of Gluten Intolerance 
Following a Gluten Free Elimination Diet 
Improving Fibromyalgia Symptoms with Food 

I let a negative celiac test give gluten a stay of execution.

After reading It Starts with Food and deciding a gentler approach to elimination would be wisest, I made plans to go gluten free.

I’m a planner. I will not make a decision that could knowingly increase my pain and fatigue levels, I have a responsibility to my baby and my husband as well as to myself.

So I created a plan, worksheets to track progress and lists of food ideas. A month long trial excluding gluten, initially including oats, would begin on June 1.

As luck would have it, I ended up with a super bad virus on May 30 and experienced such severe fatigue and pain that I got a fright! But I managed to fight through it and get back on track just four days late.

I began the gluten free experiment on June 4.

Let me just say that I had no idea that withdrawal would be so bad!

It felt like I was withdrawing from a heavy addiction. From day one I was ravenous and desperately wanted gluten and sugar (not that I was avoiding sugar any more than moderation). By day three I experienced a detoxifying lot of bowel movements, this continued into day four.

The day four symptoms were probably due, in part, to being exhausted post virus plus being up with a teething baby. However I had a massive headache, sightly diminished hunger pangs and a general blah feeling. Unpicking the general fibromyalgia/CFS threads from the flare up from the viral infection from the gluten withdrawal threads would be impossible.

I was gentle with myself, allowing myself to eat what I liked (without gluten). I found a nice half vegetable, half fruit smoothie was useful in getting me through the morning. I just can’t fill up at breakfast time, so thinking of morning tea as second breakfast helped. I allowed the chocolate craving within reason with some dark chocolate. Fruit, vegetables, our usual meals with quinoa or rice, some gluten free bread, smoothies and nuts and seeds where my staples.

Day five and six were good days! I felt like my head was clearer and my energy levels had risen.

After a week, I thought I was feeling better and a little less fogged. Certainly less upset in my stomach. However, I can’t be sure as 15 days in, I realised that some wheat fillers had snuck into some of the foods I was eating! In addition, as soon as my virus cleared up, my son gave me a lovely mucus-y cold! After three weeks sick and just over two weeks gluten free, I think that it is worth it.

It may be what I am including, rather than what I am excluding that is making the difference, but I am pretty happy with the results. My husband has been amazing, twice he has done the supermarket shop and brought back a whole heap of gluten free products (I was too stingy and ended up struggling for what to eat) but he has joined me with gusto. I have been having more quinoa and millet – both have far more vitamins and minerals than rice or glutenous grains. Breakfast smoothies full of fruit and vegetables have amped up my fruit and vegetable intake. Whole foods are taking centre stage.

Here’s a couple of things I have been reading to help me continue:

The G-Free Diet: A Gluten-Free Survival Guide 
Hidden Sources of Gluten
Grass Fed Girl blog
Gluten Free on a Shoe String blog

I was going to post my part two after my month and reintroduction was completed. However, I added oats back in for one meal and experienced severe stomach cramps followed by a mini version of the withdrawal process afterward. So I am going to do six months (yikes!). I will update then 🙂

Tiny Mission – D-Ribose

Since the the seismic shift of moving cities to take on a 3/4 time role, I have taken tiny steps to improve my life.

In the same vein, in order to track what makes a difference and to fit it in to a busy life, I’m going to try some tiny missions.

After reading some research. And taking the Energy Analysis Programme  from “Dr T” and after talking to my new doctor, I added a scoop (5g) of D-Ribose powder morning and night (when I take magnesium also).

The first dose gave me a sort of buzz, not dissimilar to a double shot coffee. It soon wore off and began to feel like taking any other supplement.

It’s a little hard to judge energy levels as my son finally stopped waking in the middle of the night so often right when I began taking the D-Ribose.

But I do feel I may have been dealing with a few seven hour nights better than previously.

It’s rather hard to experiment with my fatigue as so much changes with my baby waking or sleeping. I am noting how I feel each day but am concurrently adding in meditation and will slowly add other things as I get to know my new doctor.

After three weeks (when the doctors suggest you can see a difference):
I wasn’t sure I had experienced a difference.

As an extension to the experiment, after six weeks of taking the D-Ribose, I stopped taking it. After tracking how I felt for a couple more weeks, I realised that it hadn’t made a difference.

With some minor deflation after the hope that this was my “wonder try” that would make a huge difference, I carry on to the next experiment.

Trigger Point Therapy

Having been plagued by spots of extreme tightness on various parts of my body for years that numerous physical therapists have attempted to release and only ever achieved a small but fleeting degree of success, I am keenly interested in the study of trigger points.

It started with an article that I’ve long since lost. It showed me a few key trigger points to do for my shoulders and neck to release stiffness and pain. I use these every night when I wake in pain due to my neck.

Some of my links are affiliate links, I may receive compensation at no extra cost to you if you purchase using these links. I never promote anything I don’t 100% support myself.

This fantastic article was posted on Fibro Daze recently and gives a good explanation of trigger points and has a video showing you how to deal with your neck to relieve dizziness.The Trigger Point Therapy Workbook

Now I am reading The Trigger Point Therapy Workbook: Your Self-Treatment Guide for Pain Relief by Clair and Amber Davies.

I am loving it!

Because I have so many active trigger points, I had to start with the ones that were screaming the loudest. My neck. I have been working on my sternocleidomastoid and trapezius muscles. The book gives an overview of the muscle, the symptoms the trigger points in these muscles cause, where pain is referred to, causes and treatment. It includes great instructions on how to deal with them safely, as pressure on arteries can cause havoc.

The theory is that you deal to your trigger points three times a day until they are no longer sensitive to touch. I am unsure how helpful this will end up being. I have a lot for trigger points and my body overreacts to stimuli.  For example, I get sore legs if I don’t exercise enough and if I overdo it!

This is not a Tiny Mission. This is a big piece of work. But I’m game! Giving myself the ability to treat my body is a big opportunity. It gives me power. It gives me control. It gives me the opportunity to help myself, not helplessly wait for my next treatment session with my muscles clenching tighter and tighter!

I have also made the decision to try trigger point injections for my neck if I can’t relieve the daily tightness. I can’t go back to work and look after my baby if I continue to have daily tightness and pain to the point of headaches, nausea and dizziness.

It’s very exciting. I’ll check in with it in a few weeks. Has anyone else tackled their own pressure points and found success?


Update March 2018

Trigger points have become such an important issue for me to face since realised I had myofascial pain syndrome. The trigger points in my neck being the biggest issue I have fought for  a long time. I see a physiotherapist every three weeks still. I also self-treat at home with my theracane trigger point massager, which I adore. It is so helpful to be able to treat myself at home and not hurt my poor fingers with the level of pressure that I need.


For more information:

For access to my free resource page, sign up here. This includes templates, reports and my free microcourses.

Sign up to my FREE five lesson eCourse You vs Fibromyalgia: Arm Yourself with Knowledge

My book Melissa vs Fibromyalgia: My Journey Fighting Chronic Pain, Chronic Fatigue and Insomnia is available on Amazon.

Experiments, Or How Do You Know?

How do you know if something works?

A well designed research study tries to ensure results are attributable to the experiment and not something else.

But with fibro/CFS things change daily. There are a tapestry full of threads that make up my conditions and my context. I’m having a flare up, despite doing everything in my power to be well!

I’ve been taking D-Ribose for just over three weeks but I can’t tell you if it’s making me feel better.

My boy has finally started sleeping between 10pm and 6.30am for the most part. So that must help.

I’ve started meditating for 15 minutes a day, so that must help.

I’m also stressing about work and finding a job that fits with our schedule and doesn’t make me too sore.

My baby is getting more and more active each day!

I’m finding that not only is pain and fatigue subjective to each person, but it can be within a person. I know that I’m far better than when I was working full time or was pregnant. But I can’t tell you how I feel relative to three weeks ago.

I can’t even tell you if that’s my fogged memory or an inability to distinguish between the pain and fatigue I was experiencing then and now!

So now I don’t know whether or not to continue taking D-Ribose. Or whether it’s time to try something else. And if I do, unless there is a magical result, I may not know!

I just keep wishing for that one thing that makes a real difference. That I’ll KNOW works.

Resting on My Laurels?

Driving down the main street of our little suburb, my small double shot coffee already IMG_9390gone, I stopped at a pedestrian crossing to let a mum with three children on bikes cross. I was battling upper back pain, like every single rib and my spine were pulsing tighter and tighter in pain and a very tight, sore neck after a physiotherapy session stirred it all up, after a big day the day before taking the baby to a fair and after nine long months of being a sleep deprived mama.
A procession of thoughts struck me.

First, that mum, who gave me a big wave and smile to thank me for stopping, looked fresh and full of life. My baby had slept nine hours, through the night, but I hadn’t due to my back and neck. Those kids had a mum who was taking them for a walk at 10 in the morning, when I was so stiff I couldn’t even contemplate that.
The second was about my baby. I feel like he isn’t getting everything he deserves. His mama has very limited energy levels and soon, some of them must be expended on work. I have so many things I want to do with him.
The final, and epiphany level, thought was that I have been resting on my laurels. Yes, I have come a long way since I left full time work, on the brink of falling over. Yes, I cope phenomenally well. But I have only done what is relatively “easy”. Working three quarter time, eating healthily, exercising as best I can, seeing a physiotherapist – these are all easy. Yet I keep ignoring other things to try.
Why, when I feel so dreadful that I want to cry, do I not try meditating or going gluten free or exploring anything else to try?
It took years of fight or flight mode, doing too much, not eating well enough (and genetics) to get me into this mess. It may just take more effort to recover as much as possible.
It’s time to research all other things to try. I tried a very expensive naturopath, from which nothing happened, but I can tick that option off the list. I am currently trying D-Ribose and magnesium supplements. I am waiting to hear from my doctor about the results of a whole lot of blood tests he took last week. I am waiting to be referred to a rheumatologist.
I will keep researching. I will keep fighting on. For my boy. For myself.

Mindfulness: The Mindfulness Solution to Pain Book and Ruminations

I recently read the book, The Mindfulness Solution to Pain: Step-By-Step Techniques for Chronic Pain Management (2009) by Jackie Gardner-Nix. Katarina from Painfully Aware wrote about it and I decided I needed to check it out!

Affiliate notice: Please note that some of my links may be affiliate links and I will make a small commission at no extra cost to you if you use these links.

One key idea from this book latched onto me and has not let go since. The idea of noticing my pain and, non-judgmentally, taking note of all the details. Where it is, how it feels, what may have caused it.

mindfulness for pain

Through this idea, I have come to understand more and more the separate components of my pain. For example, I know that the pain in my neck and back is probably caused by the overreaction of my muscles to stimulus. Also, there may be a problem in my right shoulder that is causing some of the problems around there.

Edited to add 2019: It is amazing that I noticed this as I learnt in 2017 that my neck pain was caused by myofascial pain syndrome and that was a huge piece of the puzzle!

I have noted an interesting paradox with my leg muscles, they respond most negatively to exercise when they have had a break. Longer periods of exercise do cause more tightness, but it is the getting used to exercise again, even after a one day break that causes the most trouble. So I really need to make an effort to walk or do Pilates every day. Which is not easy with rain, the baby and not much sleep!

I have also noted, more clearly than before, that not enough sleep causes the most problems in my life. When I can get 8-9 hours per night, preferably uninterrupted, I can cope with it all. The pain, the fatigue and the resulting roller coaster of emotions that come with this. When I don’t get enough sleep, for a long time, I spiral. Neck flare ups, more general pain, more deep-in-my-bones fatigue, cold sores, ulcers and lethargy.

The idea of meditation has always appealed, but I have never been any good at the sitting still and focusing on the breathe version. I would take to the five minutes of lying down after yoga practice, happy for the rest after the work. I can enter a mindful, peaceful state while walking and just being. But I don’t just go and meditate.

One afternoon, I had an hour to lie down between finishing work and getting my boy, and I didn’t feel like struggling with myself to have a nap. Falling asleep in the day time, potentially because I use Amitriptyline at night-time to get to sleep, is very difficult. I get frustrated. So instead, I meditated. I breathed, I performed a body scan (mentally checking in with all of my muscles) and rested. I felt very nice afterwards.

One night, after several particularly bad nights with the baby, I found that my neck was too sore and my headache too great to fall asleep. So I attempted visualisation (the concept of visualising my pain receding and the muscles relaxing). I gave it a good effort and found it not to be a useful form of pain relief for me. I took Panadol, waited about 20 minutes and finally, when the medicine took the edge off enough for me, got to sleep.

Mindfulness and the tools that this entails are useful aids for dealing with my pain and help to lessen the effects of the emotions that come with the chronic pain. But they can’t replace medicine when it is bad, or my whole of life wellness plan.

The Mindfulness Solution to Pain is well worth checking out!

If you are interested in using mindfulness for chronic pain and fatigue:

Check out my free workshop

Changes and a Family Home

We have been looking for a house for a while. We have tried different neighbourhoods and different counties. We even considered buying a house for someone else to live in, as an investment, in an area we couldn’t live in.

But we have finally found a house in an area close enough to where we currently live and work. It has plenty of indoor and outdoor space for our growing boy. The neighbourhood is “up and coming”. But there are good schools around.

Now I’m excited to get to work with “cheap chic” decorating ideas. I’ve been waiting to decorate baby’s room and have made do with his scrapbook so far.

Of course, my first stop was the library. They have some great books on the subject. The next will be scouring the internet for ideas.

Last week baby started three short days per week with his in-home carer. I’m so thankful for this option of childcare. He will know and bond with his fully qualified early education teacher/carer, who will have no more than one other baby and no more than four children total at a time.

So the time has come to get back into my business and set up some work. Which is a bit exciting and scary at the same time. Will I have enough energy for work and my baby? Will I be able to find a good balance, physically? Will I have the energy to do other things? Will I be able to generate enough work to help is pay this mortgage? Will my neck pain skyrocket?

These questions can only be answered with experience. Please send positive thoughts my way!

Experiments

I have previously mentioned my renewed enthusiasm for achieving a higher state of wellness, since I had my baby. I have been thinking, reading, talking and generally mulling over what I’ll do.

I met a friend yesterday who had chronic fatigue for about a year after having glandular fever. She posited an interesting idea. She found that taking an immune system support supplement (with olive leaf, echinacea and vitamin c) helped dramatically reduce her fatigue. When she stopped taking it for a time, she found she got more bugs and higher levels of fatigue.

Her theory is that, while she takes the immune supplements her energy levels are supported. She’s not expending energy to keep her immune system firing.

This makes sense to me. I had just purchased high dose olive leaf and magnesium tablets. I planned to “hit” for one month and see how I felt.

The magnesium is supposed to help my muscle pain and the strong reaction my muscles have to my trying to rebuild my tolerance for exercise. During pregnancy I had fallen to only 20 minutes of walking and no pilates or yoga by the last trimester. The olive leaf was to help me kick the cold that’s been hovering, taking hold and backing off in turns for the last few weeks.

When I have completed this month, I’m going to try the immune support idea. This will be my last trial before I go ahead and get testing for potential vitamin/supplement deficiencies and treat these specifically.

It’s quite exciting to be actively trying to combat my pain and fatigue rather than just trying to get on with my moderated lifestyle!

from www.canstockphoto.com
from www.canstockphoto.com