Dear Diary...

A couple of weeks ago, I was able to take part in a webinar held by Toby Morrison, founder of CFS Health in Australia.  I'll put links at the end of this post so you can find out more about him & what he does.


The webinar was on the subject of setbacks & flares, something I am keenly interested in, especially since at the time I was in bed suffering a major symptom flare.  Just as Toby suggested, I took notes & am now beginning to put in practise some of the tips he gave.  Since I am already seeing some benefits to the couple I am already doing, I thought I'd pay it forward & share them, so more people can benefit.  I'll do this over a couple of posts or so.


Okay, the first couple of tips & advice I'll talk about is having an Activity Diary & a Journal.


First let's talk about the Activity Diary:


Toby mentioned that one key thing to avoiding setbacks or flares is to find your baseline activity.  This can be done by thinking about what daily activities you CAN do, writing them down & then each time you accomplish that task, you simply tick it off.  It's important to be positive with your list, don't focus on what you can't do, but also to be realistic & not give yourself tasks that you simply cannot cope with & end up with nothing ticked off.  In the beginning avoid things that worsen your symptoms as these can likely lead to symptom flares.


For example, if the only daily task you can do is brushing your teeth, write it down in your diary, or have someone else write it down.  Then each day you accomplish that task, put a tick next to it.  Don't worry if somedays, you are not well enough to do a certain task on your list. It's still important to listen to your body & take each day as it comes. Also avoid adding tasks to your list until you are consistently achieving your first list, do not try & rush this process, that could cause flares & setbacks. It's important to learn to be happy with the level you are at & only when YOU feel ready, add another task to the list, not before.  This also ensures that your body is coping & happy with the activity it's being asked to do before wanting it to do more.


Now for the Journal advice:


Regarding this Toby began talking about Stress & Anxiety & how these two are killers for those of us with M.E/CFS. Now those of you that are healthy may be wondering why that is. So here's a little bit of incite into how they affect us (from my very limited knowledge on the subject)


When you suffer from stress & anxiety, unknowingly, your breathing pattern can begin to change & instead of breathing deeping, your breaths become shallow.  This means that you are not expelling the carbon dioxide out of your body properly. So this begins to build up in your cells, especially in the mitochondria cells, which are the engines of the body that give us energy & also help to contract & relax our muscles.  In a person with M.E/CFS these cells are damaged & then the stress& the build up of the toxic carbon dioxide causes them to become even more damaged.  This results in a major pain flare. 


So really it's something that needs to be avoided at all costs!  Now journal writing can help with this. Toby suggested that by writing down how you are feeling & finding the root causes of your stress & anxiety, you can work through it & know exactly what to avoid in the future.  This isn't going to cure you of never having stress & anxiety again, but it can go a long way to not letting yourself be sucked into any situations that could cause them & result in setbacks & flares.


So taking on the advice Toby gave in these two things, this last week I finally got myself organised & purchased an 18 month week to view diary with a page opposite the days for notes (black) & a journal (blue). I've opted for pocket size versions so I can easily carry them around with me & write or tick off anything I want to. 










I've already seen benefits in using both of these.  The Activity Diary is helping my "Can Do" attitude & to see what tasks I am able to do everyday no matter what & also showing up the tasks that I am yet to become more consistent with.  Once I am achieve them on a good level of consistency & are feeling ok & no worse, I can then add another task to the list. Once I'm acheiving all my daily tasks, I will then begin to add in small amounts of exercise. Toby stressed "Don't consider doing any exercise, until you are able to achieve your daily tasks" (or words to that affect)   I have to admit as well, that it's a nice feeling ticking off a task on my list.


The journal writing has done wonders!  I've recently been experiencing a lot of stress & anxiety & couldn't get to the bottom of dealing with it & the resulting symptom flares were not fun!  My usual methods of calming myself is to exercise my OCD quirks, but sorting skittles isn't really the best way to deal with it. Yes I may feel calmer, but this simply doesn't identify or solve the root causes of the stress or anxiety, so it simply keeps coming back. Plus sugar is also a pain trigger for me so it's not really ideal.


So I've being trying to figure out a new way of dealing with this issue & I don't know why I didn't think of this sooner, as I really do find writing quite therapeutic.  I will admit, I'm not great at journal writing, but then my past attempts have never really had a purpose.  This journal is going to help in my recovery & I can't think of a better purpose than that!


I wasn't quite sure where to even begin but once I started writing down how I was feeling & making myself acknowledge honestly how I was feeling (which actually was incredibly down) I began to slowly identify a couple of causes of this & realised that what I was feeling was okay & that I shouldn't be feeling guilty for wanting to protect my mental & emotional state of mind.  Working through these feelings & causes by writing it all down has helped me to let go of all the unimportant negative things & is making me realise that my happiness & well being is just as important as everyone else's.


This concept is a hard one for me to adjust to in all honesty.  I really don't like focusing on myself, I'd rather focus on making others happy & doing what pleases them.  But I'm realising that this can be damaging to your own health.  There needs to be a balance: don't become a selfish person who never thinks of others & only cares for yourself.  But do make time for yourself & do what you can to make yourself happy & to protect your own mental & emotional state.


More importantly: Don't Feel Guilty About It Either!


Though all this isn't an over night cure for stress & anxiety, it is helping & after a couple of nights, writing down everything & letting it all go, I woke up the other day feeling like myself again.  I felt so much happier, more positive & with renewed determination of not letting the stupid little things bother me, especially if I have no control over them.


Putting into practise just these two things from Toby's webinar has really helped me & that's why I wanted to write about it. Hopefully, if this could maybe help even just one other person, then that would be amazing!


I am so grateful I was able to be a part of the webinar & to learn from Toby & his own experience with M.E/CFS. I really do reccomend looking him up & checking out what he does & the advice he gives.  Here are the places you can find him & learn about what he does:


Facebook: CFSHealthCentre
Twitter: CFSHealthCentre
Instagram: Tobyjmorrison
YouTube: TobyTVCFS


Huge THANK YOU to Toby! You are truly awesome!


L x