Friday, 21 September 2018

Learning from setbacks

I’ve had a very up-and-down journey with my illness so far; I’ve had episodes of being well enough to work and walk, interspersed with horrific relapses that have taken months to improve from.  Having unfortunately had another significant setback this July, I wanted to reflect back on my pattern of these to try to extract any wisdom possible to minimise potential pitfalls in future.

Causes of my major relapses:

1. Going back to work when still ill after a bug & living in a stressful flat situation.
2. Given a dose of thyroid meds by GP that was too high.
3. Given a dose of thyroid meds by GP that was too high again (should’ve learned the first time!!).
4. Getting back into a push & crash cycle through social temptations, trying to work more than able & catching a stomach bug.
5. Pushing myself beyond my abilities to cope with work, plus two emotionally stressful events.
6. A major emotionally stressful event and possibly herbal supplement side effects. 

How I’ve improved each time:

1. Resting more and eating well, moving to live somewhere nice.
2. Graded Exercise Therapy & hypnotherapy
3. Graded activity management & time.
4. Time & the Lightning Process
5. Time, pacing, positive social interaction.
6. Currently in process....

So....from my reflections it seems like significant factors are a) my dose of thyroid medication, b) trying to work more than my energy permits and c) large emotional stressors. 

Of help appears to be carefully managing my activity levels and working on factors that promote positive neurology/provide support.

I’d recommend mapping out factors like this for anyone who suffers from CFS/ME, diarising my activities has been so useful to me in providing me with objective evidence of how I respond to various situations and interventions.  Now I’ve got this overview, my new recovery plan is in process!

Fingers crossed (plus continued hard work!) for onward and upward.

Sending you all healthy wishes,

Rose Through Concrete xXx

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:

  • 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

Wednesday, 23 May 2018

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

Wednesday, 16 May 2018

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

Tuesday, 15 May 2018

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 😁

Monday, 14 May 2018

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!!