Making it to the Other Side: Pamela’s ME/CFS Recovery Story

Liz: Thanks for sharing your recovery story Pamela. 

Pamela: My pleasure. I was delighted when you approached me to be interviewed.

Liz: Can you describe how your journey with ME/CFS began?

Pamela: In hindsight, I was the ‘perfect candidate.’ Although I’ve learned that for some it can hit from nowhere, for most it can be the result of a long-term period of stress, a busy lifestyle with little let-up, or a weakened immune system after years of ill health. I experienced all three. 

It’s little wonder that I found myself hitting the awful health-related ‘jackpot’ that is ME/Chronic Fatigue Syndrome. 

After a bout with glandular fever (infectious EBV) in my late teens, I became very prone to throat infections and tonsilitis. This meant repeated antibiotics over the years, which likely messed up my gut biome (an important part of our immune system I’d learn).

At age 39, after a throat abscess wouldn’t go away with IV antibiotics, the hospital recommended that I have a tonsillectomy, which carries greater risks with age. Unfortunately, I was ‘unlucky’ and had a postoperative bleed, which led to me losing half of my blood in a couple of hours. Doctors rushed me back into the theatre and sewed me up nicely, but by then I think my body had had enough. Energy wise, I was never quite the same after that.

I remember telling my employer that I needed a few days off for the operation, and it was six months before I saw them again!

Over the next year, I had a bad bout of shingles, followed by appendicitis and subsequent appendectomy.

My body was clearly in crisis.

But it wasn’t just my immune system – I’d recently left a bad marriage after years of emotional abuse. And I was working long hours as a senior manager for a financial services organisation which was very demanding.  All of these things contributed to developing ME/Chronic Fatigue Syndrome, I’m sure.

Liz: What was your early experience seeking medical answers?

Pamela: When my journey with ME/CFS began ten years ago, in the UK at that time, there really was very little support for people with this condition.

However, unlike most others, it didn’t take me very long to be diagnosed as it was clear that my energy levels hadn’t returned to where they should have been, following the tonsillectomy. I was also experiencing increasingly bad brain fog and a constant feeling of malaise. My regular hospital stays and other health complications meant I was fortunate to have a GP who recognised something was really wrong and referred me to a local hospital consultant soon after my failed operation. I had to wait two months for the appointment, but they confirmed the diagnosis there and then. 

At that time, it was a postcode lottery as to whether you had access to a medical expert who understood the condition – at least a little.

So I was one of the ‘lucky ones’ in that respect. 

Liz: Did receiving a formal diagnosis early on help you?

Pamela: To some degree, yes.  It was important for me to receive a formal diagnosis. 

I needed that piece of paper from my GP in order to be signed off work for several months. 

This surely prevented my health from declining even further. But I never received constructive information on how I could actually recover.

The health service here didn’t have a treatment protocol to offer, other than some guidance around how to pace myself, and the offer of Cognitive Behavioural Therapy (CBT). CBT is a type of talking therapy that works on the premise that talking through any negative thoughts and beliefs can help you to overcome them and move towards recovery. It didn’t work for me, but I can see how it might potentially help some.  

So I decided to find my own answers.

Liz: Can you describe your experience finding your own answers?

Pamela: Of course. I quickly realised that I had to take control of my own recovery plan and it’s fair to say that I grabbed hold of it with both hands.

At first, I would have tried anything – I scoured the Internet for articles on helpful approaches and therapies and read as many health-related books as possible. 

I learned so much about the human body and how it functions. I read about nutrition and supplementation, and one of my first big breakthroughs was stumbling across a lady called Dr. Sarah Myhill who had set up a clinic specifically to help people with ME/CFS. She lived in Wales, several hundred miles from me, so it wasn’t possible to go and see her in person, but she had a really informative website where she shared her recommended diet and supplementation protocol.

I followed Dr. Myhill’s protocol to the letter.

Liz: Can you describe the diet changes you made?

Pamela: On the whole, I removed processed food from my diet and replaced it with clean home-cooked food. Which was physically difficult for me to do, especially in the early days, but luckily my boyfriend was a better cook than me! 

And I ensured my body was getting all of the right nutrients it needed, by supplementing with a high quality multi-mineral supplement. As well as some amino-acids that I’d read were particularly helpful.

It was all about rebuilding my immune system, but also eating foods that would give me energy, rather than sap it.

Liz: What were your energy levels like?

Pamela: The severity of my chronic fatigue wasn’t as bad as some people experience – but it was still pretty bad! I was effectively house-bound for the first six months. And on bad days my boyfriend would have to carry me up the stairs. But, other than when I was experiencing a really bad crash, I was never bed-bound for weeks or months on end.

My progress wasn’t linear, but my energy capacity gradually expanded over my seven-year recovery.

Liz: My partner helped lift me up the stairs, too. We called it a “tush push.” What would you say were the cornerstones of your recovery?

Pamela: I love the sound of a tush push! You’ve just reminded me that, once I was able to go for walks again, if we encountered even a small uphill slope my husband would gently push me forward with his hands on my back, while I leaned back into his hands. It worked brilliantly! 

As for the main elements to my recovery, I truly feel that having time away from my demanding job, along with my new focus on nutrition, were the absolute foundations of my subsequent recovery.

I had the space to effectively pause my life as I knew it and focus on what felt right. 

I intuitively knew that I needed to ‘rebuild’ my body and my immune system, and I gave myself the time needed to do this. I also had the support of my wonderful boyfriend (now husband!) who was so supportive. As were my amazing family and friends.

Liz: That’s wonderful to hear. Having support from loved ones seems to be very helpful for ME/CFS recovery on multiple levels. What are some of the ways in which your loved ones supported you?

Pamela: It’s difficult to describe, because it wasn’t any one thing. Or even anything particularly tangible. But it was the right blend of them absolutely understanding that I was sick, while also still treating me like the same old Pamela! 

It was only really afterwards that I appreciated just how supportive they’d been. I’ve since spoken to many people with this condition whose friends and loved ones just don’t even try to understand what’s going on. 

After all, this is often an invisible illness, and this means some find that their family and friends don’t even believe they have a ‘real illness’. 

It was learning this that started to draw me towards finding a way to help these people myself.

Liz: Thanks for sharing what led you to your calling in life. Can you describe your trajectory back to health? How did your intuition about needing to rebuild and give your body time to heal (mentioned early) factor in?

Pamela: It wasn’t all smooth sailing. I wish I could say that my recovery was quick and seamless, but it was far from it.

And because of that, it did get tough sometimes to stay positive and keep consistent with my plan. 

But looking back, of course it took a while! You can’t heal and strengthen your body in a matter of days, or even weeks. 

For me, it took around a year before I was well enough to be able to leave the house on a fairly regular basis. And even then, I had to put all of my pacing knowledge into practice to have any hope of having any energy at all by the time I returned home. 

After three years, I was feeling optimistic that things were solidly improving, and after five I remember thinking that if this was as good as it was going to get, I could live with that. I was far from back to how I’d been pre-diagnosis, but I had a good semblance of my old life back. 

Liz: From our earlier chats, I know you’re fully recovered and can exercise now. What was your experience like, though, trying to exercise during recovery?

Pamela: I’d been quite a gym bunny before I got ill, but I wasn’t able to really ‘exercise’ again for the best part of seven years.

For those years, I just couldn’t get a handle on doing any sort of intensive exercise while successfully pacing my energy in a given day. 

During my recovery journey, I did get to a stage where I was walking a lot though. Only small amounts at first, but after five years or so I was able to walk for 20 or 30 minutes without triggering any bad reactions. I learned to love walking.

Liz: You mentioned “pacing”. Can you explain what your interpretation of pacing is, and how it helped you recover?

Pamela: Sure. Pacing became (and still is) such a way of living, that I forget sometimes that many people and medical professionals aren’t familiar with what it is. We’re taught “exercise is good,” but almost nothing about recovery.

I think the first thing to note is that pacing is different for everyone. The whole point is that it’s about learning your own body’s rhythms and limits, and then working out how to start living your life while not overdoing it. After all, everyone has a limit to the amount of energy they have. Even athletes in peak health. 

But for those who have an illness that compromises their energy and their ability to recover from exertion, they really don’t have much to use.  And they have to learn how to balance what they do have, with the key actions they need to do each day.

Liz: Can you describe your personal experience of pacing – what lessons did you learn?

Pamela: As my condition improved, so did the amount I could do. But it was important not to get carried away with the optimism that this then created.

I’d soon learn that if I got carried away and pushed things too much, I’d suffer the consequences over the coming days. 

My pacing did get hit when I returned to work and as I slowly ramped up my hours again. Although it was desk-based, my job was pretty full-on and would leave me wiped at the end of every day. But again, it was back to basics with my pacing approach and I soon found a way to ensure I could give what I needed at work, even if it meant I could do very little once I was home in the evenings. I didn’t always get it right and occasionally I’d have real setbacks that would knock me for six. And every time that happened, I’d worry that I’d gone right back to square one – but that wasn’t the case, I’m pleased to say.

Slowly, I learned to stay positive and believe in my own recovery.

That made a huge difference – learning to relax and let go of the almost phobic fear of getting ill or overdoing things and causing my body to ‘crash’.

Liz: How did you learn to keep your spirits up and believe your full recovery was possible, despite setbacks?

Pamela: I think the biggest thing was my sheer determination to recover. I just didn’t want to even contemplate that it wouldn’t happen. Plus, of course, the support of those around me, as I’ve already mentioned above.

We hear a lot about the importance of ‘positivity’ when tackling CFS/ME – which is absolutely true. But positivity alone won’t fix you, it’s the combination of things. I think where positivity helps most, is in keeping you focused on your plan and motivated to continue it until improvements start to happen. 

I’ve since qualified as an NLP Coach, and have learned tools and techniques that are helping my clients get into a positive recovery mindset. 

Liz: Wonderful to hear Pamela. Neurolinguistic programming was one thing that also helped me heal. Was there anything else that helped you recover not mentioned above?

Pamela:  One of the final things that I’m sure tipped me into complete recovery was making a decision to quit sugar. This was five years after being diagnosed with ME/CFS. I was an avid reader of various health journals and websites and had read time and time again how damaging sugar was. But while I heeded all the best dietary advice, I had selective hearing about sugar! I loved my sweet food, and I hated the thought of giving it up. 

But one Easter I remember feeling so sick after eating way too many chocolate eggs, and I decided to kick sugar ‘just for two weeks’, to see what happened.

Long story short, the transformation to my health and energy was so remarkable, that I ended up kicking sugar almost completely for two years.

I’d only allow myself treats on very rare occasions, such as an ice-cream on my birthday or a dessert when we were on holiday. 

Although I’ve now reintroduced sugar to my diet, having fully recovered, I’m nowhere near as bad as I used to be!

Liz: When would you say you were fully recovered?

Pamela: The day I now mark as my ‘recovery anniversary’ is 10th April 2017. I was back working full time and able to travel a fair amount again for work and pleasure.

I’d also managed to plan a wonderful wedding, which had taken place the month before – a real dream come true and something I wondered if I’d ever be well enough to organise, let alone attend. 

I remember the 10th of April very clearly. I was sitting on the sofa at home with my new husband, Pete. And I suddenly stood up and announced I was going to go for a run! I just felt such an overwhelming surge of energy and the need to go and burn it off. So, I did! I went for that run – albeit only for a few minutes – and I felt fine afterwards. So, a couple of days later I did it again, and over the next few weeks I really reconnected with exercising again – I even joined a gym! 

This feeling of having enough energy to to expend a large amount of it on exercising and feel good the following day was such an amazing change. And it’s why I use the date of that first run as my anniversary marker.

Liz: Congratulations! On your beautiful wedding and your recovery. What is your life like now and your new mission?

Pamela: That brings me to where I am today – I’ve just passed my three-year anniversary and I’m feeling better than ever.

Top: Pamela on her birthday this March 2020. Below: Pamela in Sri Lanka in 2018.

So much so, that a couple of years ago I started to put plans into place to leave my senior corporate career of 30 years and retrain as a Wellness Coach to help others with ME/CFS. I love my new career and it feels wonderful to be able to help others with their recovery journey.  

I’ve combined my personal experience of what worked for me, with the knowledge I’ve gained while studying for my NLP qualification, and have designed  a framework to use as a starting point with my clients. I very much tailor each session to each specific person, but the framework is a great way of quickly getting them into a better place fairly quickly. And from there we start to discuss and build a tailored recovery plan.

I get so much satisfaction from helping people tackle this frustrating and debilitating condition.

The feeling of knowing I’ve helped someone start to get their life back never fades. And I don’t expect it ever will.

If you’re interested to learn more about Pamela’s work, you can visit her website www.pamelarose.co.uk. If you’d like to chat about how Pamela can help, she’d love to hear from you. Pamela works with clients in-person and virtually across the UK and overseas.