So in previous parts of the seminar, Toby talked briefly about what CFS/ME is and how and potential causes (Link), Toby’s Triangle of success: Survival, Accept, Adjust, Believe & Achieve (Link) and the effects of stress and mindset to recovery (Link).
All the above are great, but how do we get past the acceptance stage and start adjusting, how do we keep a positive mindset and hope if there is nothing we can do to help ourselves or we think we have no hope of ever getting better?
In most cases this simply is not true, there are things we can do to help ourselves, it may not mean recovering fully from CFS/ME but giving you access to a better quality of life.
As I mentioned in part one a the IACFS/ME conference held in San Francisco earlier this year, the largest of its kind where specialists from all around the globe came together;
Self care was rated the number one thing to make people get better from CFS.
So if self care is so crucial, what specifically can help us to start to feel better?
Toby has pinpointed 5 areas which he calls the 5 pillars of health, which each will help us to start to feel better, and these actually mirror the advice that I have been given from the NHS Courses I have been to as well(Sleep & Relaxaton):
Toby’s 5 Pillars of Health
- Stress/ anxiety management
Sleep is different for very individual, what one person needs will differ from the next, good sleep hygiene/routine is important.
Waking up at the same time every morning and trying to go to bed at the same time every night really does help; if possible ween yourself off of day time sleeping as this will improve quality of night time sleep, although ween yourself of it slowly so that it doesn’t have any adverse effects.
I have found that on week days I tend to go to bed at about 11 get to sleep for about 11.30/12 and wake up naturally at 9 now, it has taken a couple of months to start waking up naturally at around 9 (15 mins before my alarm goes off).
I talked about sleep in a lot more detail in one of my previous posts, so if this is something you are struggling with it might be worth a read (Link)
Food is Fuel
Fad diets for the majority of people don’t work, and can often be very expensive and when they don’t work you can be left feeling very despondent.
Instead figure out what works for you, be careful when trying out completely new diets as this could cause you to have a set back.
Remember: Don’t stop if something works or has worked in past and if your doing something doesn’t make any different after a decent period of time CHANGE.
If you eat crap your feel crap.
Exercise has got such a bad reputation when it comes to CFS/ME, through poor advise given by various health professionals, the thought of simply pushing through the fatigue and pain is simply wrong and has a very high chance of causing a monumental set back.
So if it isn’t about pushing through what is movement all about then?
Toby begins to explain, that if you are bed bound and your muscles start to de-condition etc, how can you expect to be able to go out for coffee with a friend etc.
What we need to do is to build: strength stamina and energy, and to do this we need to move.
Movement/ exercise for us does not mean a session in the gym, what you can do now will be completely different from others around you and your old-self, so never compare what you can do to others or what you used to be able to do.
Movement for someone who is completely bed bound could be to sit up once a day.
For Toby during his recovery began with one wall press up and a 1 min walk a day.
At the IACFS/ME conference movement was listed as one of the key factors for recovery and improvement for CFS/ME.
That is all being well, but it is really hard to know where to start, as it is so individual what is right for one person can be monumentally wrong for another, and getting it wrong and doing too much will likely put you into a vigorous push crash cycle and lots of time in the valley of death.
So what should you do?
Well start small, what worked for me which I talked about in a previous post is to think about what you think you can do and divide it by two, then think to yourself what is the likelihood you would be able to do that every day out of 10?
If you think 7/10 or above that is probably a good place to start, if lower than a 7 lower it a bit.
So what exercises are good for us to do? Basically low intensity and resistant exercises, such as:
- Light stretching
- Stretching with a physio band
- Wall press ups
- Going from siting to standing
- Walking if you are ready for it
Progressive exercise isn’t about pushing yourself which leads to a push and crash cycle, it is about getting consistency and slowly increasing over time (on your own time scale)
When it comes to progressing Toby recommends using the 5-10% rule, so for a 10 minute walk you would do an extra 30sec to 1 minute extra when it comes to increasing. The NHS recommended (link) to me 10-15% which has worked for me so far but I guess Toby is being more prudent.
Key is consistency over intensity
Remember you are not going to see change over night, it usually takes at least 6-8 weeks to see change in your body.
Toby talked more about this earlier in the session (Link).
One of the great things about Toby and his health center is how he has redefined CFS, and on all his hoodies and t-shirts etc it stands for:
Choice Future Success
Whilst it is hard to do so, it is really important not to let your illness define you.
For me this is about not talking about my illness all the time with friends and family to try to feel a bit more normal, and try to do some of the things I used to do even if it is in much shorter quantities in both frequency and time. Also writing this blog is something that has really helped as I feel that I am bringing something positive out of a pretty rubbish deal.
If you think that you don’t need to change your mindset for the better because you have an illness, and you use being ill as a reason not to do anything (however small), how can you expect yourself to progress? As you are negatively reenforcing to yourself how ill you are and how you won’t get better.
Recovery is not just about mindset, as you need to focus on every aspect of life. But having the right mindset can help set you up and give you the motivation to live within your means right now, accepting you can’t do everything but that you can do somethings and take it from there.
Stress the final pillar of health, Stress, stress, stress you are o so stressful.
Stress is something that I really struggle to deal with, as I can get very overwhelmed.
You have to accept that stressful things happen! They happen to everyone whether you are sick or health, rich or poor; a lot of stressful things in life you can’t control/ eliminate so it is how you deal with them that’s important.
A great quote that I love, I know that it has religious origins, which I am not but this saying has really got me through a lot of things:
Accept the things I cannot Change, the courage to change the things I can, and the wisdom to know the difference.
For me this means trying to cut out toxic people and activities in my life, obviously this can’t necessarily happen over night but over time this is so important and has really helped me. This is often not an easy task, especially if you are like me and like to try and help everyone or have known some of these people for a long time and also if you have been doing certain actives for a while. I am not quite there yet but getting there and it feels so freeing even though it is really hard to do.
Acceptance is key, I cannot control that I am unwell so I can’t do everything I used to do which can be really stressful, I can’t work full time or get up to full time quickly, or be spontaneous when it comes to social or anything in my life. So if you can’t change this and you are doing all you can to try and reach it, it is wasted energy (which I have limited amounts of) to stress about these things.
In theory this is great but I still stress about things, but instead I try to meditate (link) or read my wellness wall (Link) have a nice bath or try to think of action plan to how to change the things I can.
So remember control your stress or it will control you.
To give the seminar justice I am breaking it down into 5 Parts, so not only is it easier to read but also for me to write 🙂
- Part 1 – Intro to Toby Morisson Road to Recovery (Link)
- Part 2- CFS/ME Triangle of Success (Link)
- Part 3- Effects of Stress & Mindset on CFS/ME Recovery – (Link)
- Part 4- 5 Pillars of Health for CFS Recovery