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Recovery, when mentioned in relation to illnesses like Fibromyalgia, CFS and chronic Lyme Disease, is a controversial topic.

I’ve encountered people who remain hopeful and believe that recovering from Fibromyalgia, CFS and Lyme is possible. And, I’ve also come across others who completely shut down the idea given that there is no known cure.

Recovering From Fibromyalgia, CFS & Lyme Disease is Uncertain

I can completely understand both viewpoints. After all, recovery from Fibromyalgia, CFS and chronic Lyme Disease is an uncertainty.

People can live with these illnesses for years— even decades— and see no progress despite their best efforts trying various treatments.

Recovery can feel like a chronic illness version of the lottery. You never know who will strike lucky.

There Is No Set Treatment Plan or Path to Recovery

The most difficult thing with chronic illnesses such as Fibromyalgia, CFS and chronic Lyme is that there is no set treatment plan. There is no one thing or path to follow that will help everyone.

Treatments are very much a case of trial and error. You can do your research and minimise risks but, ultimately, going into them no one knows how they will respond. Some will see progress, whereas others will notice no difference.

The scariest part is that there’s even the potential that treatments may make us worse. What turns out to be the best option for one person could end up being someone else’s nightmare.

Living with chronic illness is harder than I can describe. And, sometimes trying treatments can be even more difficult. Some treatments I tried left me feeling utterly broken.

Each of us is Individual

We are all individual and can respond differently to treatments despite living with the same diagnoses.  My view on this is that we may all be living with the same diagnoses but how we each got to that point varies.

Though there are set diagnostic criteria for each diagnosis, we can be affected differently; both in terms of the symptoms we struggle with most and in symptom severity.

The bottom line is we all share diagnoses but what’s actually gone wrong in our bodies is unique to us as an individual.

Trying To Get Better Can Feel Overwhelming

This in itself can feel overwhelming. How can we possibly know what will help us if we don’t even fully understand what is going on with our bodies?

It’s soul destroying to try treatment after treatment over the years and either see no progress or only get so far.

To put yourself through it time and again in the hope that this time might be different… it takes a lot of resilience. Resilience that gets worn away as time goes on and you find yourself falling flat on your face yet again.

At one point, I couldn’t bear to read about success stories because it felt so out of reach for me. It felt like everyone was recovering by doing all the things I was trying.

Yet, they weren’t working for me.

I would always be asking the question, “why not me?” And I never knew if it would ever be my turn.

At my lowest points, my mind told me it never would be.

We Need To Show Ourselves Self-compassion

Over the years, I learned that I had to show myself self-compassion and let go of expectations. Instead of trying really hard to get better, I parked the idea whenever things felt too overwhelming and difficult.

The stress and pressure we can put ourselves under trying to improve can be completely counter-productive. It can all become too much.

Sometimes this isn’t helped by people around us who don’t fully understand and expect us to get better with time.

Plus, it can feel all-consuming taking umpteen pills a day or having to try and fit in various things like meditations, yoga, healthy meals… you name it! It takes over your life and that’s not fun for anyone, especially when the progress doesn’t match the efforts being made.

Being At My Lowest Led To New Discoveries

Ironically, it was always when I felt ready to completely give up that I’d find a missing piece to my puzzle.

I was at my lowest point when I found Dr Rawls and the Restore program (which has helped me greatly over the years). And, it was when I was ready to accept that I’d only be able to progress so far in my recovery that I found Infusio (where I had stem cell treatment).

Click here to save $50 on the Restore Kit

Holding onto The Hope of recovering from Fibromyalgia, CFS & Chronic Lyme Disease

So how did I manage to keep hold of the hope of recovering through all of this? Especially given it’s such an uncertainty.

The truth is I didn’t. Sometimes I lost it completely. And, that was okay.

I needed to give myself a break and go with the flow of things. Learning to adapt to where I was at in the current moment was more important for me.

In fact, it was often quite liberating and reminded me of the benefits staying relaxed about my situation.

With time though, hope would start to gently creep back in and I’d allow it.

I guess now that I am very much on the road to recovery, I’m acutely aware of those of you who feel so distant from it. I, therefore, wanted to share some of my thoughts on the topic of recovery and let you know that I’m sensitive to your situation and completely empathise with you.

It’s Okay To Let Go of The Idea of Recovery

Know that it’s okay to feel upset reading about other’s progress (I’ve been there many times!). Show yourself kindness and compassion when you need it.

Sometimes I needed to stop reading, researching and following how others were doing for the sake of my own mental health.

My advice to anyone in this situation would be to look after yourself first and foremost. Try to remain open to the idea of recovery but appreciate that it’s okay to stop trying to get better right now and live in the present moment.

Take things as they come and do whatever feels right for you. And, never let anyone make you feel like you are not doing enough.


I’d love to hear your thoughts on this topic down in the comments below.

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6 Comments

  1. Very good summary of what”s wrong with Afflicted and the cruel comments at Reddit and elsewhere. My ME/CFS phone group discussed this and someone suggested writing a comment at Netflix”s Facebook page. I did that. I suggest others do that, too. We can raise a fuss with Netflix. If they are flooded with complaints, the network may respond. Pressure sometimes affects these stations.

    • Hey Stef, I think this comment may have been left on the wrong post as there’s no mention of Netflix’s Afficted in this post.

  2. Hi Donna I was wondering if you could shed some light for me. I’ve been very sick and housebound for many years now we’re everyday feels like dying and I’m scared to put a foot wrong in case I end up back in a and e for the millionth time we’re they have no clue how to treat me. I was wanting o go to Infusio but I’m not well enough to travel abroad without getting some treatment in the uk so was thinking about Breakspear but I’ve heard some negative comments about it recently which has me concerned but I don’t know what else to do because I’m in a weak position were I’d need treatment in the uk first. Are Breakspear good? I don’t know anyone else who has been there to ask for positive feedback we’re theyve received treatment and got better. It’s a lot of money to spend if they can’t help me.

    • Hello! I am sorry to hear that you are very sick and I empathise with your anxiety and concerns surrounding Breakspear. I can’t tell you what to do but my approach to Breakspear was to go to the initial consult, speak with my doctor and decide whether or not to have treatment following this.

      Here are my posts on my treatment at Breakspear that may be helpful for you to read:

      * My initial consultation at Breakspear Medical
      * An update on my Lyme Disease treatment at Breakspear Medical
      * 8 things I’ve personally learned about taking antibiotics for chronic Lyme Disease

      I also just published a post today, chatting about whether I wish I’d had stem cell therapy sooner which may be of interest. You can read it here.

      • Thank you very much I will check them out. I’m very apprehensive about whether antibiotics will do anything as I’ve been exposed and exposed to Lyme unaware for over a decade so another reason why I originally wanted to go to Infusio first but my health is so severe my family worry that the trip alone could put me in a hospital in Germany. I will read the posts you suggested and thank you so much for your response.

        • You are welcome, I’m happy to help if I can. I appreciate your concerns about antibiotics. But, know that you don’t have to agree to take them if you go to breakspear (even if they are suggested). My advice to everyone is to follow their intuition when it comes to treatment. It sounds very woo but I believe in being our own health advocates and making the choices that we believe as best for us. If you’d like to chat more about Breakspear or Infusio, you are welcome to email me— donna@februarystars.co.uk 🙂

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