Today I leg pressed 193 kg (not bad for someone who weighs about 58kg’s)
And it got me thinking..
91 weeks ago I had one of my biggest relapses with CFS.
And 87 weeks ago I decided that would be my last, I was giving CFS recovery my absolute all.
That’s the day my life changed, that’s the day health was my mission.
Picture the worse flu you have ever had, now times that by 10 in severity- now that’s exactly what CFS is like, hard to imagine isn’t it?
That was me everyday for FIVE YEARS!!
You set your alarm for the morning, hopeful you’ll be feeling better because you can’t take one more day of the pain and aches and fatigue (and everything else).
Your alarm goes off, and you wake up from a restless sleep, the pain you had is still there, the headaches still there, the fogginess is still there, and the drowning fatigue is. still. there.
You go back to sleep hoping if you give yourself just 30 minutes more that it will all be gone. Unfortunately you wake up worse than before.
If you’re lucky you’ll sit up in bed and slowly get back some awareness, some. The day goes on, with you coping with the bare minimum, that includes walking to the toilet, possibly standing in the shower, and carrying your doona to the couch and setting up some mind numbing TV for the day. I want to make this clear, that is a GOOD day with CFS, a bad day? You wouldn’t make it passed the bed, and you’d sleep for maybe 14-16 hours a day.
This goes on for months at a time; there might be a few good days, but mainly just the bad ones. Sometimes you’d push yourself to leave the house socialise, school, or in some extreme cases- party. Usually you’d pay for this later with a bad day.
What people don’t understand about CFS:
-YOU CAN’T SLEEP OFF THE FATIGUE.
-Fatigue isn’t the only symptom
-What are the other symptoms?
Muscle & Joints aches and pains
Inability to get a refreshing sleep
Lack of appetite digestion issues.
-There’s no set cure, no answers
-There’s no hope a lot of the time
-CFS exacerbates other illness’ and can bring on more Illness’ such as depression, anxiety, pots, BP issues, and all the rest!
-CFS fatigue is not your normal fatigue after gym, or a full day at work. It’s the fatigue where even lifting your head off the pillow is tiring, or picking up the kettle is too hard, standing in the shower is difficult to say the least. There is nothing normal about the fatigue you feel with CFS, there’s nothing good about it, and there’s nothing comforting, this fatigue feels like it’s eating at your life force, your energy, and on dark days eating at your existence.
Now that I’ve told you the bad, I had that for 5 years, can you believe it? I went through that hell for 5 years.
Hard to comprehend when I was just bragging about Leg Pressing 193kg.
Now I want to start by saying
I FULLY RECOVERED FROM CFS.
And I want to take you through that process. It wasn’t easy, definitely not easy, but IT WAS WORTH IT.
Here’s where it started
This is my second email to Toby; I applied for the program 2 years prior but wasn’t ready to dcommit.
I was just wondering what your 12 week course entails, right now I’m looking at all possible avenues to get back to healthy -I’ve had CFS for 4 years now- and I was just wondering if I need to purchase your book or join cfs health centre, or meet with you, or what my best options are. I’m open to all ideas, and any information or guidance you can give me will be much appreciated.
Feel free to email me here, or call.
Your story is very similar to mine, I was an avid netball player and at the age of 14 I found out I had glandular fever and then Chronic Fatigue Syndrome, it’s been almost 5 years and I’m ready to get my life back.”
A response came from Toby a day later- There were no spots for me at that time, but one of his seminars were coming up. So I booked for that, adamant I could annoy Toby enough to help me (desperate= 100% yes)
This was the seminar- (23/6/2013)
The topic was on Chronic Fatigue. “The talk will not be about the negative effects of CFS but rather the positive ways to react to the negative causes of CFS and ways to reverse it.”
First thought? ‘Wow there’s a positive way to look at this hell?’
The Seminar was amazing! I was so nervous about it all as I had to drive an hour to get there, then sit in the seminar and hope I could get it all in. My wonderful Mum came with me. The moment I met Toby, I knew he had recovered, there was no doubt in my mind it was possible- I mean the man just looks like the definition of health!
The seminar was amazing (yes I said that already) It was so great to meet people who were going through the same thing, and I wasn’t alone! I even managed to speak and ask questions- something in any other circumstance I would NEVER do.
After the seminar I had a chat to Toby, he reassured me it was possible for me to get better – and that, was the very first time I actually believed it.
Post seminar, Mum and I talked all the way home about my soon to be recovery story and straight away went to the supermarket, and bought a ridiculous amount of healthy food, and a brand new drink bottle- because hydration is important, and food is fuel.
The next day (24/6/2013) Toby had a ‘cancellation’, I’m pretty sure that cancellation was him giving up any form of a lunch break to see me.
The first session is always the hardest, because I had to be brutally honest, and actually accept how this illness was affecting me- I’m not one to admit I need help (I am now.. when I need to). It was easy for Toby to see just how much I had suffered through, and how many little mistakes I had made to detriment my health along the way (I’ve admitted it once, and I’ll admit it again- I used to treat my body like sh*t.)
We spoke for ages, about what I was doing right (very little) and what I could work on (A LOT), We first went through baseline and eating habits- both were all over the place. Anyway, after the first session I went away with the biggest smile on my face, and more determination than ever before- I was going to do this.
This is what Toby sent me after day one-
Great to meet you today Raeya,
You are inspiring to me the fact that you have got to where you are at with minimal help! You have a bright future ahead of you.
I’ll admit my first session with Toby, my health wasn’t at it’s worst, here is my very first health assessment-
My Energy levels were a 5
Muscle soreness at a 5
And Body strength at a 3
**To me, anything other than a 10, may as well have been a 1
I started off with a 5 minute walk- which to me felt like an absolute joke.
15 push ups (wall I think)
15 sit ups
25 second plank
** I know a lot of you think that’s quite high, and it is, what I need to explain; is previous to seeing Toby, I was already trying the GET theory by myself (and over doing it) I started with 5 and worked my way to 10, and then with Toby got to 15. That became my baseline, my starting mark.
During a standard day I found I couldn’t really do much, school was way too hard, housework too, and especially socializing. Exercise for me was okay, but those things I really struggled with.
Day one of the program I kept a journal- thing’s I did throughout the day, activities and movement and energy levels. For me, that kept me going as it was solid proof that I was going upwards. I still have it- I worked my way up from day 1 to day 365.
Progression with exercise for me was easy, that was slow and steady, yes I pushed it a few times (classic Raeya) but I always bounced back quicker than I thought I would.
It was progression with healthy eating, socializing and day-to-day activities that I struggled with.
Socialising was what usually would bring on a setback. What I didn’t understand or think about until I became a health coach was: Socialising is hard, on every aspect; you’re physically working and mentally working at a higher capacity than standard activities. Why? Because we don’t want to look sick- so physically we look fine, we’ll walk that bit further because our friend can and wants to. We’ll talk and talk and talk because we want to be surrounded by people and life, not TV shows.
I struggled with healthy eating- how easy is it to grab the crap stuff?
Not over night, but slowly I worked on my healthy eating, as I started to pick up a bit, I started to learn how to cook, and prepare myself better food, and yet even though I was working a bit more, I was feeling better because my body was getting the nutrients it wanted. I’ll admit, I’m not a crazy healthy eater, I still have my bad food days (Hence my nutritional therapy cause, practice what I preach.)
Slowly over the 12 week program, my health increased, there was no magic cure, no quick fix, nothing but determination, good help, and dedication.
A lot of people ask me about my experience, and the outcome is ‘how can I recover that quick’
How? Make yourself NUMBER ONE PRIORITY, you can’t do what you want to do, or be who you want to be until you accept where you are right now. Dedicate yourself to YOU, and that’s when the results come. I am talking from personal experience. I didn’t recover in 12 weeks, but in those 12 weeks I built habits that focused around my health, and yes I still have those habits. I stretch everyday, still exercise, still have a bedtime (sort of), still make sure I eat often and don’t skip meals, not because I have to, but because I look after myself, and I still listen to what my body is telling me.
It’s the most invaluable thing I could have learnt- being in tune with my body.
I could go into more detail, but I feel I have rambled on enough, the next big thing I went through: was dealing and accepting the new and improved me. We expect we will go back to being who we were, for some people that’s not a good idea, they’ll just get CFS again.
But we don’t go back to who we were, we learn too much- I became a very different person: I feel, for the better.
Those 12 weeks I spent with Toby were the best thing I could have ever done for my health, not only was I learning, I was changing, and growing.
All throughout recovery all I wanted to do was go back to exactly who I used to be- but eventually after learning everything I learnt, that was the last thing I wanted to do.
During CFS it’s hard to remember who you are, you can’t do what you used to, and usually you can’t keep up with your own personality. I used to think this was a bad thing- not knowing who I was. But as I got better, I realized I had a blank canvas, I could go be whomever I wanted, do whatever I wanted (I felt Invincible).
So coming out the other end of the tunnel sometimes was a hard thing because I was creating a new me, my new canvas. Comparing myself now, to who I was in 2009, I would say I’m completely opposite. Health is my main focus; not only for myself, but promoting health and helping anyone else I can on their journey to health. My principles are different, my beliefs, my hobbies, and even my friends. During my recovery, as bad as it sounds, I gave a few friends the flick, just because they were energy drainers. There’s a famous quote “surround yourself with those who bring you up, not down” and that’s exactly what I did, and still do. There’s a few people I see who say “you’ve changed” to me, that’s a compliment, I’m so much better now than I ever was.
It’s important to surround yourself with those who value your happiness as much as you do- and that’s exactly who I surround myself with.
What’s it like post recovery?
Recovery was hard, dealing with being a new me was hard. LIFE IS HARD.
I had this glorious idea that post CFS, life would be amazing, and nothing would ever go wrong, I soon learnt that!
Having gone through everything I did, I wouldn’t take any of it back. My foundations are strong, and whatever is thrown at me, I can deal with,
Despite my sometimes feelings, I am not invincible, I still get sick, such as cold’s but only if I ignore the warning signs if I’m a bit stressed. I still get tired, because that is a normal part of life, but the fatigue is different, it’s your normal ‘okay I’ve done something hard, I’m tired’. As I said in a previous post, I used to be afraid of fatigue, because with CFS with the 20/10 fatigue, it usually brought on everything else. It took me a long time to figure out that normal everyday fatigue is okay, it’s normal, and it’s not the CFS trying to crawl back in. It also took me a very long time to realize I was fully recovered because I was too fearful to push myself further; it was only through exercise and unexpected events that taught me I had fully recovered.
With everything I’ve said, what I was trying to get across is:
The process is hard, but worth it.
Post recovery and learning who you are is hard, but worth it.
Coming out the other end of the tunnel is hard, but worth it.
Being a new person is hard, but worth it.
Changing for the better is hard, but worth it.
And last of all life is always going to be challenging, but always 100% worth it.
Can you believe this has been the short version of my process?
I hope it has been relatable to a lot of you, and I hope that when you feel like you may be going through it alone, I’ve been there, many others have been there. But most importantly, your goal of health is 100% achievable with the hard work.
This is me now working at the CFS health centre in Melbourne Australia. I can’t recommend the program enough, it practically gave me my life back! If you want to enrol in the same program I did click here https://chronicfatiguesyndrome.wufoo.eu/forms/cfs-health-recovery-program/
All the best – Raeya BQ – CFS Health coach.