Playbook: Here ’tis

So back in Feb, I had a go at the PEM crash kit, I think I lasted doing it for about a month. I had to fill it in 3 times a day. It got a bit tedious and totally doesn’t mesh with my lack of discipline. I think I lasted about 3/4 the way through it. In the end the symptoms they needed recording about, it just got repetitive.

Then I just saw a post about a new sufferer who was diagnosed as ‘mild’ who was searching for advice on how to stay at this level and not get worse. In addition to this, I had a conversation today about my approach with some friends, one who suffers from chronic conditions and the other who is Personal Trainer. So after waking from a 4 hour deep recovery sleep from today’s beach outing, I think the universe is telling me to share my Playbook.

So it’s about survival, yeah?

Acuteness

Deal with the acute, because it’s going to happen. Don’t get your knickers in a knot, just realise it will happen. Take the day off work, or move your work around. Take that nap, take that sleeping concoction if it’s going to get you through the night.

Relapse Plan

If your acuteness is going too long, i.e. you are taking that sleeping pill every night and not making it out of bed for a week or so, implement a Relapse plan.

Invest in Yourself

The absolute scariness of going through the battle to receive welfare these days is not worth the stress. I think I invest about 1/3 of my income on keeping in a workable state. Financially and emotionally it helps me.

This includes:

  • Chiropractic: 1-4 times a month (depending on symptoms)
  • Naturopath: once a month
  • Myotherapy (flushing massage): once a month
  • Supplements
  • A supportive Doctor, as required

Food

Keep disciplined about your diet, keep away from the crap and perhaps rethink foods that result in inflammation of the body. For me it’s reduce the gluten, white rice, dairy, chips and sweets. Up the complex carbohydrates, raw veges and protein. So know what foods work for you. Also eat regularly, about every 2 hours, I always pack a food bag.

Hydration

This works for me. I try to get about 2 litres of fluid in my body before 11. This includes supplements drinks (an alkaline Basica and an Ayurvedic called Elite), about 1 litre of water and a couple of cups of green tea or warm water. Then I just sip the remainder of the day. Gotta be near a bathroom though as lots of visits.

Don’t Push It

This is super important. My Mum always said, you have to have petrol in the car for it to go. My daughter does dance eisteddfods and these are fun days but full-on. Depending on the date, I spend the lead-up with some heavy rest days and then after, if I can, also jump right into bed as soon as we hit home. Do not feel that because someone else is pushing themselves you have to. Never compare.

You need to learn your body’s reactions and work with your ecosystem. Mine include starting to drop things, I start to get ‘auras’ in my eyes, and when it’s bad, I can’t form sentences.

Be assertive and say no. You’ve got a good argument, it’s the difference of being there or missing it all. You chose the sacrifices you have to make.

Keep Fit in body

If you can, do something. Please note though, I am not a fan of a forced exercise plan.

For me, for the past 6 months, it’s just a little yoga. I had a session with my local yoga guru and asked for some moves that could help when I felt up to it. She gave me 3, I do only 2 of them. It isn’t taxing but I feel better after doing them.

Given some recent activity levels indications, I decided that I should just dip my toe into some activity. I found a clinical Pilates centre that treats fitness in chronic disease. We are going at snails pace here in working up to a level where I will be able to take a class. Again, work with your body’s ecosystem, and where you are at.

Keep Fit in Mind

This is a big one for me. I have outrageous Reverse T3 levels, nearly twice the maximum level. For me, stress turns directly into physical symptoms. So I work on my outlook and try to approach life’s challenges with a more tolerant mind. The book, The Art of Happiness by the Dalai Lama has played a wonderful part in this. When something is a little bit annoying, I park it and reflect later, does it still matter? The Dalai Lama says, if you worry about something and can fix it, fix it, if you can’t fix it then don’t worry.

Another great book the Dalai Lama has been involved with is Destructive Emotions by Daniel Goleman. Eye-opening about how some emotional concepts exist in some cultures but not in others. It gives you permission to remove the toxicity in your emotional life.

Also, I don’t feel I am owed anything, that it is society who should look after me. That I am a victim. I see that my last relapse was partly caused by my work that formed part of a perfect storm. I didn’t put in a workcover claim, I didn’t make anything offical, but I did ask them for support while I got well enough to return to work. Their loyalty there was heartful. I get teary thinking about it. They are happy to invest in a partnership with me.

Be Informed

Stay in touch with other sufferers and developments in the field of M.E.. This can be through Facebook groups, blogs, or organisations. A great thing about the sufferers is the collective effort in sharing information. Use what works for you and keep your level of involvement at a healthy level. Be balanced, after reading a heavy tech document, search for cute baby goat videos as well.

A note on social media posts, don’t feel you need to be involved in all of them. Offer your love and support when you can but your world is also outside this condition.

This is it for now, but I will add to it as needed.

Blessings

Em

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