Whilst Toby clearly stated that CFS/ME is not all in the mind, he emphasised the negative effect stress has on those with CFS/ME and a lot of chronic illnesses, and from personal experience I can defiantly vouch for stress causing my symptoms to flare up.
Stress is the #1 cause of chronic illness in the world.
We can be our own worst enemy. People with CFS/ME can often stop doing things because doing them causes anxiety and to be frank it is truly quite scary.
This can be from:
- The anxiety that doing the thing in question is going to cause you some pretty serious payback
- You wonder if you have forgotten how to do it
- Run over various outcomes in your head about how it is going to go and,
- How people are going to react to you.
Toby went on to talk about a memory of his, when he had began to recover he was invited to a party, he wanted to go, however when his Mum pulled up outside his friends house to drop him off he went grey and started to feel sick which resulted in his Mum turning around and driving them both home.
To be perfectly honest this has happened to me a lot, not necessary the driving up to a friends house, but calling and making excuses to why I can come:
- Sometimes this is because I am not up to it
- Not having enough credits (Link) left that day
- Being scared of how my body will react
- Being worried what people will think of me be being there.
I think the later is the biggest one for me, as I can be good for a night have a few drinks and can appear back to my old-self and then friends or colleagues get the wrong idea, as they don’t see the fall out (Link) or the preparation that was involved in me going (Link).
What are you telling yourself?
When you think about yourself, your ability to do something or go somewhere, what is going around in your head?
Are you telling yourself all the things you can’t do, lying to yourself about where you are right now or focusing on what the current you can do? What are you rehearsing to yourself?:
- I’m sick, life is crap, life sucks, I’m too sick to do that,I’ll never be able to do it, I CANT’ I CAN’T I CAN’T! Focusing on all the things that you can’t do, comparing yourself to others or what you used to be able to do.
- I can do this every things fine, I won’t give in to this illness, I can still do everything I don’t need to make adjustments, I just need to plough through. I’m fine everything is fine.
- I have CFS its not great, but I can still do X,Y,Z with these various adjustments, I can put things in place to help elevate some of my symptoms and get some more functionality in my life, and I can do X,Y,Z.
Both options 1 & 2 are bad and are things you need to overcome.
Being negative and focusing on the bad things in your life and what you can’t do; you are mentally rehearsing that you are ill and you can’t do anything. This will lead to you feeling worse, as basically you are mentally rehearsing not getting better!
Equally number two is just as dangerous, as you are not accepting where you are right now. You will keep experiencing extreme pushes and crashes and are likely to make yourself worse in the long and short term as you are not listening to your body and making adjustments to your life.
Option three is by far the best, accepting where you are now, but instead of focusing on what you can’t do and comparing yourself to others or what you used to do; focusing on what you can do now and celebrating the little achievements that you make.
Mindset has be proven over and over to have such a significant impact on recovery, not just with illnesses like CFS/ME but a vast array of illnesses (Link).
So that being said how can we focus on the positives when to be frank we are living with such a grim condition? Well make a list of what you, but also what you can’t do but would like to be able to do in the future:
So for me a couple of these would be:
|Can Do||Can’t Do (Right Now)|
|Walk for 10minutes (Link)||Take the dog out for a long walk or go for a walk if doing other things that day|
|Work for 3 hours by doing 1.5hrs working 30min Break 1.5hrs working (Link)||Work full time|
|Socialise providing I plan (Link) and accept there is likely to be payback (Link)||Be spontaneous with social events/ go out as much as I would like|
|Drive for 20 minutes outside rush hour traffic||Drive long distances or during rush hour|
With these lists you can start to turn your can’t do (right now) list into your goals, and gradually items move over to the can do list.
Remember worrying uses energy which we want to conserve.
Real life example
Toby then talked about how this exact exercise has helped one of his patients:
She called him six months ago crying for help, with the biggest list of problems Toby had ever seen, not just CFS/ME or CFS/ME related issues. Toby was really worried about if he was the right person to help her but she pursuaded him to give her a shot.
She had been suffering for 9 years and house bound for 3, unable to sit up or go to the bathroom unaided. So after both of them agreeing to try, conducting a few exercises including the one above.
I can’t remember if he said he had another Skype call with her a month late or 3 months later. But when he skyped with her it was like we was talking to a different person, now she was able to sit up and was smiling.
In the space of time between the calls she had realised that she could do things like go to the bathroom, talk for short periods of time and sit up in bed.
She had for so long been telling herself she couldn’t do those things, but by changing her mental rehearsal, from ‘I can’t sit up’ to I’ll sit up for 1 minute and when she could do that making it 1.5 then 2 etc she realised that she could do things she didn’t realise that she could.
Now six months on she is at a point where she can drive, and go for a 15 minute walk.
She was told by her doctors that she wouldn’t ever get better or experience any improvement, but whilst she is not cured and she might never be the functionality and quality of her life has seen such significant change.
What do you want?
This is such a complicated question in my opinion, I immediately go to thoughts of wanting to be better go back to what my old life resembled, not to be in pain. I would imagine these are pretty common answers for any person suffering from a chronic illness.
So think instead about all the things you can’t do right now think : I do want to feel good, I can do XYZ
End each day by writing one thing (or more) that you did well that day.
I have a little note book by the side of my bed, not only do I do through and work out how many credits (Link) I have used that day, I also write a brief summary (just a couple of words) on what went well (WWW) during the day, what went not so well (WWNW) and my focus for tomorrow.
When it comes to the WWW, this could be little achievements like I managed to walk an extra minute, I spent 20minutes writing for my blog, going out for coffee; but equally for me it is I managed to rest periodically through the day, I listened to my body and didn’t just ‘push through’.
You might not think that not going for that coffee with a friend is a good thing but actually if it is because it would take you outside of your credit limit or your body is crying out for rest, it is a positive.
With the WWNW I tend not to write about things that are outside of my control, sometimes I put a comment on if my pain or fatigue is worse than normal but then I try to write the reason why I think that is. More often than not my WWNW tend to be things like I pushed myself too much, didn’t rest or do my exercises or even I didn’t do my previous days focus for tomorrow task as I just watched TV or played on the internet.
I think it is most useful when you WWNW is something that you can act upon, it can then feed back into my focus for the next day, so on a day I haven’t rested enough, my focus for tomorrow would be to schedule X amounts of rest times and to come in at less my top number of credits.
My focus for tomorrows, really vary as they often fit around what I am doing the next day, if it is the night before a work day, my focus is usually ensure have sufficient rest breaks during the day and after work.
If one of my WWNW was that I didn’t eat regularly/three meals that day one of my focuses for the next day to eat 3 meals and at least one snack.
I really recommend doing this, it helps you try to focus more on the positives in your life and what you can do, but also turning some of the things your not doing well into ways you can help move forward.
- Stress is the number one cause of chronic illness worldwide
- Natural for those suffering from chronic illness to suffer from anxiety
- Mental rehearsal is crucial – make sure you are mentally rehearsing the things that are most likely to help your recovery.
- Make a list of all the things you can do (however small) and a list of things you want to be able to do, as you move forward move these items across, from can to cant. Also create smart goals to enable you to get there (Link- Coming soon)
- Focus on what you can do right now and the small achievements in your life
- A great exercise to do to help this is at the end of the day, write one or more thing that went well, one that didn’t go so well (one that is in your control) and your focus for tomorrow.
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 🙂