Saturday 16 June 2018

The Lightning Process - my experience

I did the three-day course a few months ago after the Bristol University trial showed that people improved more after doing the Lightning Process than from ‘standard care’ (pacing activity etc) alone.  Real scientifically-tested evidence!!

Comparing the program’s publicity ‘overnight recovery stories’ with the University research was a bit of a red flag.  The university found people improved on average 12% more than the control subjects over 6 months.  Useful, but not the overnight miracle suggested by the publicity. 

However, with limited evidence-based options available I decided to give it my all. To my surprise I did manage to attend all three days which I’d been really worried about beforehand having been housebound a few months since a relapse. The course is mostly education about how your brain is subconsciously in ‘fight or flight’ mode and that if you ‘turned off’ that by doing ‘the process’ you wouldn’t get all your symptoms and exhaustion. Voila - no more CFS/ME - simple!!

Getting the promised theory to work in practice was another matter however.  The ‘process’ is a mixture of visualisation, self-coaching and kinda miming!! I kept doing them, hoping that persistence would pay off and I’d get some kind of magical transformation like some people online reported.

My confidence in doing things did improve a bit, I found the traumatic memories from some of the worst parts of my illness seemed to fade away a bit and the positive memories and experiences came to mind more easily.  I took a ‘leap of faith’ and I did some activities outside of the ‘graded exercise’ limits.  That might sound small but was actually quite a scary prospect when limiting your activity is the only thing that has kept you ‘safe’ from horrible symptoms for months.  I did still get PEM quite a bit, but it wasn’t as bad as I expected and I was able to do a bit more than I’d thought ‘safe’ before.

So I improved a bit over the course of a few months. I started doing a bit of part-time work and was delighted that I managed to carry on doing it for 2 months. Each day I’d never be sure if I would make it through work or not, but I was just about coping. I was doing ‘the process’ a lot, hoping it was helping.

Suddenly some unexpected stresses popped up in my personal life and together with every day already feeling like a real effort and physically exhausting, my health fell apart again and I had a significant relapse.  I phoned my practitioner for advice ‘just keep doing the process and working on your thoughts and your health will be fine’ she said. So I did. Everyday, many times. But no change.  

I’ve improved again slightly over the course of a few months but I can’t say that LP has been a ‘cure’ for me even though I really wanted it to be.  I wouldn’t say it was completely useless either and I do still do some ‘processes’.  I made a list of what was helpful/unhelpful for me in case it helps anyone else:

Helpful: 
  • Traumatic memories of illness got fainter.
  • I managed to get out of the pattern of ‘imagining things going wrong’ when thinking about doing something I’d not been well enough to do for a while. For example imagining *coping* with going to an appointment physically, instead of imagining *not* coping. This seems to help things go better in practice.
  • Helped me to focus more on positive memories and experiences, which can be a challenge when most of your memories are illness-based in recent years.
  • Helped improve my confidence in extending my activity limits.
  • Overall, mentally it was generally helpful.
Not helpful: 
  • Although LP says you should only focus on your own progress, it’s difficult not to feel like you are failing at it when you don’t achieve the ‘transformations’ from it that some people report.
  • I ended up ignoring a secondary health problem for ages as I kept being told that my symptoms were caused by ‘subconscious fight or flight mode’.
  • Trying to get what my brain wanted (to do my job and see friends) conflicted with what my body wanted (rest rest rest) and this didn’t change however many ‘processes’ I did over months.
  • When I relapsed it didn’t make any difference to my physical condition even after days and weeks. It helped me stay more positive during this challenge but physically, it doesn’t seem to be the key for me. If it is having a physical effect, it’s a small, very gradual one. Just like the 12% the university trial found really!!
Wishing you all health and happiness as ever ❤️x

Tuesday 5 June 2018

Sensitive stomach eating

Hello all and hope life is going well.

As an incidental - anyone who wants to know when I'm posting a new blog post - if you go on the 'desktop version' of this site there should be an box at the bottom of the page where you can get email notifications of any new posts (it's automated, so I don't get your email and no spam or anything).  Also, I'll mention each new post on my CFS instagram 'A daisy through concrete' depending on which method you prefer!

I've been thinking a lot about my food and nutrition this week and though I'd do a post about it as I haven't come across anyone who has mentioned similar issues (though I'd love to hear from you if you have).  Basically I have a very sensitive digestive system, it seems to get very inflamed and as much as I'd love to follow all the 'eat lorryloads of fruit, veg and wholegrains' advice to support my health, my insides can't deal!

So I get left with a dilemma about how to eat in a way which is supportive to my health in terms of providing nutrients without making my insides really angry.  At the risk of tmi - it isn't IBS cos my bowels are fine - it seems to be more a stomach/upper GI issue.

I recently had an appointment with a specialist CFS nutritionist and we're doing more investigations to try to get to the bottom of what is going on.  And of course I've been through all the NHS checks, they are totally baffled.  I do have diagnosed Coeliac Disease so gluten is a total no-go and I haven't had any for years.

What we do know makes it worse:

-Fibre, especially insoluble fibre. So fruit, veg, wholegrains, bread, seeds, dried fruit, nuts etc.
-Fatty foods.
-Large quantities of protein.

Which mostly leaves a bit of lean protein, white rice and dairy.  I do eat little bits of fruit and veg but have to keep it minimal or it leaves me in mega pain.   I take multivitamins to help nutrition and omega 3 too.

'FODMAP' recommended foods (a diet recommended for IBS) also cause me issues so it doesn't seem to be the 'fodmaps' that are causing the problems. By experimenting on myself I found I could manage 'orange veg' pretty well - carrots, squash etc and I just learned on Chris Kresser's website (Paleo diet expert guy) that these particular vegetables are low in 'insoluble' (indigestible) fibre.  He describes eating insoluble fibre as like taking a wire scouring pad to your insides if you have inflammation.  Which is what it feels like frankly!

So the question is - what to do to decrease the inflammation? I've been taking some soothing herbs that the nutritionist has recommended me; she also suggested I do a dairy-free month to see if that helps.  I'm working on increasing my non-dairy calcium intake this week in preparation to try this (tofu and sardines mostly, as I can't do it through green veg!). I'll let you know!

Probiotics and prebiotics are also mentioned a lot as solutions to digestive issues.  Prebiotics are indigestible fibre so not an option for me currently.  I can manage some probiotics (mm, sauerkraut!) but kefir made my insides go insane!!

This topic is very much a work-in-progress for me so I can't offer any 'ultimate insights' currently, but I wanted to share my experience in case it helps anyone else with sensitive insides be able to eat again. I've literally had months where I've scarcely been able to keep anything down (isn't digestion a glamorous topic!!).  Orange veg, rice, lean protein and 'soft' yoghurty-type texture foods are the way!

Wishing you health, love and happiness as always xx