The evil of PEM

A post I’d especially love the the ‘normals’ to read!

Having a bit of a PEM day today and was just reflecting on how I think PEM is probably one of the main reasons that CFS is so misunderstood.

PEM stands for ‘Post-Exertional Malaise’ meaning symptoms and illness that you get AFTER doing stuff. ‘Malaise’ seems a bit of a ridiculous word to be honest, which conjures up images of neurotic Victorian women swooning on couches....just me then?! But for better or worse, PEM is used to describe the ‘crash’ in energy that can happen a day or two after doing more activity than usual along with the joyful symptoms that entails (migraines, swollen glands, dizziness etc etc).

I think the reason it’s such a tricky one is that people can look at us and think ‘but you were totally fine doing that walk on Monday; why would you be ill on Wednesday if it was the walk?!’

I think this is where the ‘all in your head’ ideas come from - as people outside think something along the lines of “well if she is fine on the walk and ill two days later, it must be the sitting around at home that is bad for her.”  

And hence the spirals begin - people push you to do more as you seem fine whilst doing things. And you feel anxious and resist, because you know you will suffer for it later. So then people begin to think that you are just a really anxious person and that that is the reason you can’t run round going to work, seeing friends and exercising.  This leads to a lot of conflict and misunderstanding between those with the illness and the people around them I think!

There is some technical reason why our CFS bodies can only produce energy at a certain rate that is lower than non-CFSers (mitochondria). The irony is, if we keep within that rate and don’t expend energy at a faster rate than we make it, we can gradually build strength and be able little by little to be able to produce energy at a slightly higher rate.  

However, if we give in to others’ well-meaning urges to do more, we continue to stress our body by using up all the energy available to us, spend several days (or weeks or months) crashed out and then having to start all over again.

I’m just beginning to learn that my assertiveness is something I must develop in order to win the long game with this illness.  I hate conflict with others and feeling that others are disappointed in what I can do, or that they think I’m not ‘trying hard enough’ by pushing myself to do more.  Not to mention that I also want to do more than I can currently.  But I’ve been through enough cycles of relapses now to finally realise that I’ve got to put some firm boundaries up with other people or I could get stuck in these cycles forever.  And I am not having that!

Wishing you all lots of health and happiness.

A Rose through Concrete (I will get there!!) xx

Ps - shout out and lots of love to the supportive non-CFSers who listen and don’t go down the ‘just push yourself’ path - you are literally saviours, thankyou xx

Graded Exercise Therapy

Graded Exercise Therapy (GET) was also the first CFS strategy I tried after my first really bad period of my illness where I’d been hospitalised for a while but hadn't yet been diagnosed.  I found out about it on the internet, read the manuals and tried it out on myself.

The basic theory of GET is pretty straightforward - you work out how much activity you can do in a day without making your health worse, then add 10-20% to that each week or two so that you gradually do more and more.  So if you can walk 10 minutes a day, every day, you do that for a week or two; then you walk 12 minutes a day, every day - the next week.  And so on, as far as you need.

It’s supposed to avoid the major ‘ups and downs’ of CFS - where you wake up feeling a bit better than usual, go for a walk and then spend the next few days in painful misery in bed.  That used to really confuse me when I first got ill. I’d always be thinking “but I felt better yesterday! I thought I was finally recovering, but now I’m worse than ever!!’.  GET was useful in understanding that I was worse the next days BECAUSE of the extra I’d done on that better day.

For me personally, it did help me to get some stability back and gave a bit of a sense of control over my health which all helped my sanity.  However, it definitely didn't magically transform me into a fully-functioning health bomb either!!

For me personally, GET helped me to:

• Understand why I got awful days after good days.
• Even out days to more of an 'average' level rather than (relative) peaks and massive troughs.
• Gradually build up my confidence in doing a bit more activity.
• Build up how much I could do so I could walk more and do more.

Bad things about GET for me personally:

• It certainly didn't 'cure me' - I had a ton of brain fog from pushing myself walking everyday.
• It worked quite well in my first period of recovery, then seemed to work less and less well after each relapse and became harder and harder to do.
• My days varied in how good and bad they were despite keeping physical activity the same.

I think those are the main things! So in a nutshell I think for me, GET helped me to understand better how my activity levels influenced my symptoms, but there was a lot else going on with my health that it didn't resolve, it made the brain fog worse (from physical exhaustion I think) and didn't resolve the relapses.  

Nowadays, I don't believe that a single approach can resolve this illness, I think a much more holistic approach is needed, but there are things I learned from doing GET that I carry forward - I do need to challenge myself a little at a time to progress and running around doing tons on 'good' days is a recipe for creating a 'trough'.  A more balanced approach to activity levels across my days is helpful to me.

Wishing you all lots of health and happiness, Rose 🌹xx

What I have done so far...

So, as the Occupational Therapist told me at the CFS clinic ‘we don’t have a medicine we can give you to make you better so what you do is your medicine instead’.

In CFS it seems to be all about removing as much physical, emotional or any other type of stress possible, so your body can grow stronger and become well again.  

I love reading recovery stories of people who have got better from this condition and it seems like there are some common themes: mindfulness/meditation, minimally processed diet, a healthy balance of rest and gently nudging up activity a teeny bit at a time, dealing with patterns that may have overstressed your body.

So this is what I’ve tried so far: 

• Graded Exercise Therapy (aka ‘GET’).
• Activity management (like GET but broader).
• Cognitive Behavioural Therapy by CFS specialist (CBT).
• Hypnotherapy.
• The Lightning Process.
• The Gupta Amygdala Retraining Programme.
• Mindfulness/meditation.
• Psychotherapy.
• Massage.
• Nutritionist.
• Dietician.
• Plus about a million doctors who found me very mystifying and didn’t know what to suggest!!

I’d say most of these approaches helped me a bit, though CBT and the nutritionist didn’t help me personally.  I’m actually scheduled for an appointment with a much more specialist CFS nutritionist tomorrow morning, so fingers crossed - I’ll let you know!

Feel free to fire questions at me about any of the above if you’d like; some of it will be fairly mysterious to those who are unfamiliar with CFS.  I definitely didn’t do all of these at once, but perhaps when people wonder what I do all day when I’m not able to go to work - this might shed some light 😁

Hello everyone, this is me.

I'm the 'Rose' of this blog's title.  I have been working hard for two years to recover from Chronic Fatigue Syndrome (CFS; also known as Myalgic Encephalomyelitis or M.E.)

I decided to start writing this blog to help me record my recovery journey - as an online diary really.  I don't know if anyone but me will ever read it, but if you do and you have any constructive suggestions of things I could do to improve my health or my blog, I'm all ears.

I'm in my early thirties and was working full-time in my dream job, zipping round the country at weekends visiting friends, walking in the country, sipping delicious cocktails... you get the idea.  Then I got ill.  But I am determined I will get better.

I am really determined that this blog should be a positive account of my journey (though anyone familiar with these illnesses will know they are challenging beyond belief) so I don't want to dwell on the details and lows of the past couple of years, but in a nutshell and despite my best efforts, I'm mostly housebound currently.  


I've made good progress a number of times (using a variety of approaches - that's another post to come!), including returning to work and being able to walk as far as three miles in a day at times; but I've also experienced several major relapses which have left me unable to get out of bed much for months.  


I try to learn from my experiences each time, to build a more sustainable recovery in the future.  That's part of why I decided to make the blog too - so I can put all my learning out there to reflect on and hopefully grow through.  Even if it feels like trying to get through concrete sometimes - if the flowers can do it, so can I!!