When times are tough it’s difficult to find the mental and emotional strength to keep going. It can be comforting to hear of others going through similarly tough times and coming out the other side.
I found listening to positive stories really helped my emotional state, and built my belief that I could recover; that I could beat this horrible illness.
For the first nine months of my illness I couldn’t read. It was too difficult for my brain fogged mind to cope with. During this time I signed up to the Optimum Health Clinic’s Secrets to Recovery Website; I highly recommend this resource. As well as having great information about things that can help your recovery, it has lots of recovery stories from former patients. I listened to these stories, sometimes multiple times. Slowly they helped me understand that although there is no magic cure for ME/CFS, it is possible to recover.
Later in my recovery, when I could read again I searched for inspirational books. Two that stand out for me are:
- Things Get Better by Katy Piper
- After the Crash by Martin Spinelli
I’m currently reading Wild: A Journey from Lost to Found by Cheryl Strayed. I’m only part way through this, but I’m already inspired by this book too.
These books are not about ME/CFS, but they are all about people working through difficult times in their lives.
I also came across the film Fat, Sick and Nearly Dead. If you haven’t seen this yet, then make an effort to watch it. It is a great example of how changing your diet can change your health.
I’d love to hear about other inspirational stories you’ve come across and enjoyed, either books or films. Please share in the comments below.
“The power of healing is within you. All you need to do is give your body what it needs and remove what is poisoning it. You can restore your own health by what you do—not by the pills you take, but by how you choose to live. When you eat and live in accordance with the needs of your cells, your body can finally concentrate on healing, and that is when the dramatic changes will happen for you.”
Dr Terry Wahls
I saw Dr Terry Wahl’s TEDx talk Minding Your Mitochondria a few months ago. If you haven’t seen it yet I suggest you check it out.
Here’s a quick bullet point summary
- Dr Wahls has MS
- She went from using a tilt recline wheelchair to being able to walk unaided, cycle 30 miles and horseback ride.
- She did all this via changes in diet, meditation electrical stimulation of her muscles and self massage.
- She recommends eating a paleo diet with 3 cups of green vegetables, 3 cups of sulphur rich vegetables(cabbage and onion family, mushrooms and asparagus) and 3 cups of colourful vegetables each day.
She is proof that the functional medicine approach to chronic disease works and she is now working on clinical trials to prove it to the wider medical community. In the meantime she’s sharing the information she has learned in a new book: The Wahls Protocol. I’ve pre-ordered it and I’m looking forward to reading it next month.
Meanwhile if you’re struggling with ME/CFS, MS or any other chronic disease I hope her TED talk gives you hope that things can change.
It may seem to you that all has been quiet on this blog, but I have been beavering away and I’m really pleased to announce that my pages about meditation are all now live.
Some of the pages have been available for a few days and I apologise to anyone who read them and tried to follow the links. I discovered several of them were broken. I have now checked and repaired them all.
You can find all the pages about meditation under the other helpful stuff tab, but to make things easier, here are direct links to all the pages.
Today I’ve put a new page up all about the fight or flight/maladaptive stress response. Since I’m not sure you get updated when I post a new page, I’m writing a post about it too.
It ended up quite long, as for me it’s a really important component of my ME/CFS. If you have brain fog and struggle to read long articles, break it up into sections.
I hope you find it useful. I always enjoy feedback so feel free to leave comments.
Here’s the page link again fight or flight/maladaptive stress response.
I’ve been struggling for the last week. I don’t know why; perhaps it’s the change in the weather, perhaps I’m fighting off an illness. All I know for sure is I have less energy than usual, and the everyday tasks that I’ve been gradually getting more successful at managing are once again too much for me.
So I’m writing this post as much for myself as for anyone else who’s also struggling. Here’s what I know I should be doing to get back on track.
- Listening to my body, not pushing to do more activity than I feel I can manage.
- Getting enough sleep.
- Having regular rests in the day
- Not catastrophising. It’s easy to let the negative thoughts take over – “I’m back to square one”, ” I’m never going to get better” “nothing I’m doing is working”
- Doing very gentle stretching exercises. I’ve got some very simple yoga exercises that I do. WIth the decrease in my daily activity and more lying on the sofa my muscles get more achy. Gentle stretching helps my circulation.
- Using distraction to stop focussing on how bad I’m feeling
- Reducing neurological activity
- Continuing with my healthy eating
- Focusing on things I’m grateful for
So how am I doing at the above list?
- Sometimes with three children I am forced to do more than I feel able. However, as much as possible I am easing off on the activity front. My husband is being really supportive and the kids are quite good at fending for themselves (sadly they’ve had plenty of practise in the last two years).
- My sleep is not as good as usual. I have been having some daytime naps because I am so tired, but this isn’t helping my night time sleep. Moving forwards I will be trying to do more guided meditations throughout the day to stop me reaching the point where I feel I need the daytime sleep. I will also make sure I have valerian tea before bed to aid my night time sleep.
- For some reason I have been reluctant to go back to my rest schedule from a few months a go – 4 rests of 30-60 minutes each. I think this is because I don’t want to admit that I’m not maintaining my progress. However, I know that the way to get out of this is to nourish my body with plenty of rest. Tomorrow I’m going to be strict with myself. This will hopefully stop my need for daytime naps and help me improve my nighttime sleep.
- I have had some negative thoughts creeping in, but I’m aware that they’re not reality. By using guided meditations that focus on positive visualisations I will be counteracting these thought patterns and building positive neural connections.
- I’ve been doing little bits of gentle yoga and stretching exercises.
- I’ve watched plenty of Rom Coms and other “happy” TV over the last few days. That’s worked well at distracting me, but I think it’s been too much neurological activity. I’ve also been doing a bit of reading, but despite trying several books I can’t get into any of them. I’m not sure if this is because the books are not very good, or because my brain doesn’t want to do reading at the moment. I’ve just downloaded a new audiobook. I’m hoping that will be a less demanding distraction.
- I think I’ve been having too much neurolgical activity. When I’m physically fatigued and looking for distractions TV, computers and books are the obvious choices. However, by increasing my rests I will decrease my neurological activity.
- My diet is generally good. I haven’t managed to do my juicing the last few days; it has felt like too much effort, but my meals are still good. I also had a piece of gluten free cake, so I have slipped on my sugar-free eating, but overall I think I’m still a 9/10 for my diet.
- I have found focusing on things I’m grateful for helpful in the past, and I have been using this technique to counteract the negative thoughts.
Sometimes it’s necessary to take a step back on the road to recovery. However, I know I’m not back at square one. I have a really good understanding of my illness and what to do to feel better. I just need to be extra diligent at doing all these little actions over the next few days.
To anyone else struggling at the moment. Remember, it won’t last forever, things will improve. A book that really helped me last year was Things Get Better by Katy Piper. If you’re struggling to cope with everything I highly recommend it.
During my recovery I have made several major changes in lifestyle. Most of these have been done gradually, as when you have very little energy it’s hard to change anything.
I have been reflecting on how I have made these changes and realised that when I’m successful I focus on what I am increasing or moving towards, not what I am decreasing or moving away from. Here’s a couple of examples to illustrate what I mean:
Increase rest and decrease activity
I focused on increasing my rest by agreeing a rest schedule with my Occupational Therapist and over the coming weeks my focus was on ensuring I rested at the times we had agreed. To do this I had to stop whatever my activity was at that time and go and rest (at that time I used to lie on my bed to rest). This naturally meant I decreased my activity, but I didn’t think about that aspect.
Increase vegetables and decrease processed food
I have made many changes to my diet. You can view my foods to eat more of and foods to eat less of lists. Whist there does need to be some awareness of what you are trying not to eat it is much better to focus on adding in the foods you want to increase.Since we have a finite appetite this will naturally lead to a decrease in other foods (the processed stuff we want to move away from).
With this focus I can think about eating the foods that nourish my body and help it to heal, which makes me feel good about myself, rather than focusing on the foods I can’t eat and feeling deprived and negative about the changes.
I personally don’t ban any foods, I haven’t been diagnosed with a food allergy/intolerance. So therefore if I want to eat a certain food I can. However, the more I stick to the foods that are good for me, the better I feel and the less I want to eat the foods that I’m trying to avoid.
If you’re struggling to make a change try focusing on the positive aspect of the change – know what you are moving towards and focus on that rather than what you are moving away from.
This morning I heard a story on the news about sleep being a time when the brain detoxifies and I wondered if there is a connection between this study and the brain fog we get with ME/CFS.
This is purely my own speculation based on observations of my brain fog. My brain fog improved gradually as my sleep improved (after I began treating my adrenal fatigue). Perhaps this is because now I’m able to sleep better my brain has more time to detoxify itself, and hence everything works better.
Another possible reason for brain fog is mitochondrial failure. Perhaps our brain cells simply can’t make enough energy to operate properly.
Whatever the reason behind my brain fog, I’m glad it’s receded sufficiently for me to be able to write this blog. I’m thankful every day that my health is improving.
I just came across this excellent article by Nancy Blake entitled a Radical Care Pathway for CFS/ME.
I believe this approach would make a huge difference to patient outcomes. There are far too many people being told to keep pushing, when the best course of action would be to rest.
I hope the NHS takes this on board and treatment of CFS/ME patients improves.