Believe you can beat CFS: How I made a quick and complete recovery from CFS/ME
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I battled with CFS for almost two years, before making a full recovery in May 2011, and two years on it is now well and truly behind me. I largely owe my recovery the amazing and inspiring recovery stories of other ex-CFS sufferers. I am deeply grateful to everyone who recognises how valuable it is to get these stories heard. It is because of people like this that I am now in a position to tell my recovery story to the world.
May 2009: The beginning.
When it all started I was working as a psychologist for a consultancy company. I worked from home on projects that were large, daunting and really tested me to the limit, while also trying to learn to drive, apply for an MSc, and finish writing a novel. I started this job straight after finishing a degree where I had worked myself into the ground to get a First, not realising that for a significant part of my final year at university I actually had glandular fever!
One day in May 2009, I sat down to start work and found that I simply couldn’t. I was unable to focus or think and instead felt drained. In the past my mind had always been busy, and my thoughts would be racing from one thing to the next. All of a sudden, I’d lost the thing which made me who I was, instead my head was filled with a thick fog, and my preferred activity became sitting in silence staring at the wall for long periods because reading, talking or too much noise were overwhelming.
When I went to my GP, he said that I may have Chronic Fatigue Syndrome. Knowing what was wrong didn’t bring much comfort, as most information I found on the internet was very negative. I quickly gave up doing any research about the condition.
Around two months into my illness, I moved in with my boyfriend of six years. This involved moving to Kent where he had a new job, and would mean living about three hours drive away from most of my friends and family. However, I was very excited about the whole thing, and I think at this point I just assumed things would just work themselves out.
July 2009 to December 2010: The Middle
A lot happened during this time, I got engaged, moved house again and started planning my wedding. I went through various stages of trying to cope with my CFS. Some things I did were helpful, some really weren’t.Anger
Initially, I was frequently filled with anger about my situation and set about picking apart my past to discover all the different reasons why it might be my fault or something that I deserved. It was a difficult and emotional time.Looking Back:
I wish I’d been kinder to myself. It’s not a good thing to think of CFS as a “punishment” for something you’ve “done” as it won’t make you feel any better and it’s not true. Nobody deserves CFS, just like nobody deserves other illnesses.Acceptance
Gradually, my anger faded. I decided that things were not going to change any time soon. I went to see my new doctor in Kent and he referred me to a CFS/ME service but there was a 40 week waiting list for an initial appointment. As I was not given any other advice, I felt there was nothing I could do but wait for this appointment.Looking Back:
Some degree of acceptance is useful, as accepting something is wrong motivates you to get help. But I was too quick to believe there was nothing I could do except sit around waiting for an appointment. Emptiness
Throughout the whole experience, my lack of identity was one of the things that disturbed me most. I didn’t know myself anymore. I didn’t know what I liked, what I wanted out of life, what I was good at or what sort of person I was. I’d given up everything I used to enjoy doing, and I couldn’t make any sense of what was left of me. My main identity essentially became that I was ill, because that was what I spent my time doing, and thinking about. My world shrunk. It was difficult to keep in touch with people; have them ask what I was doing and have to reply that I was ill. Looking Back:
I suspect that feeling like I had no identity anymore reduced my motivation to get better. Because I didn’t know who I was or what I wanted, I think on some level I probably couldn’t see the point in being well. I wish I hadn’t spent so much time dwelling on this. My identity had not disappeared forever, once I got rid of the CFS it returned.Routine
I managed my CFS on a day to day basis with routine. I did the same amount of activity each day and it kept my energy levels fairly stable. In terms of physical strength I actually began to improve, but I couldn’t deal with any stress or anything requiring much thinking (and by this point I was trying to plan my wedding, which involved a lot of both!) Looking Back:
I would say that, while helpful, keeping a strict routine was more a case of dealing with the symptoms of CFS than tackling the cause. However, I think routine was really important to keeping my mind healthy as it allowed me to achieve things each day, and I could congratulate myself on every small thing I achieved, whether it was getting out of bed, sending an email, or going out to post a letter. I felt pleased each day that I managed to do everything I wanted to do, but importantly I also tried not to beat myself up if sometimes I couldn’t. Blood sugar
I’ve always been a bit prone to low blood sugar, but as my CFS continued it became like a prison. If I went out, I’d have to have snacks with me in case it got bad. I ate what I thought was a normal healthy diet- low fat, high carbohydrate, but I was always hungry. I began to put on weight while ironically my body seemed to be telling me I was starving. I felt hungry again about an hour after eating a meal and I would watch the clock for the next time I could eat again. I usually ended up making dinner in a terrible state- shaking, unable to think properly, weak, with blurred vision and a terrifyingly intense craving to eat sugar- which I would have to do in order to continue- and I’d be irritable and confused, snapping at my fiancé.
I spent a lot of time wondering if there could be something wrong with my diet. I was so worried that I asked a doctor for advice but because I was a normal weight it wasn’t suggested that I change my diet. Apparently my blurred vision was caused by my body releasing loads of adrenalin (thinking it was starving to death, I suppose!), but the advice to combat this by “eating a biscuit” left me more confused than ever. I never ate biscuits. I seemed to be piling on the pounds as it was, I didn’t want to start eating stuff like that! I knew my situation wasn’t normal, but the world seemed to disagree. Looking Back:
I knew my body was telling me it was in serious distress, but I let myself be talked out of it. When your mind is exhausted it’s hard to trust your own thoughts, but I knew what I was experiencing was wrong, and I was right.Control
Ultimately, my life became all about control. I knew what I could do, and I knew what I couldn’t do. I didn’t like extremes of temperature, different food, different people, different places or anything I had to think too much about. Any disturbances to my little world resulted in debilitating amounts of anxiety. As long as I could just stay in my flat with NO interference everything would be fine. I felt really guilty about how much my fiancé had to help me, and all the things it seemed like he would have to sacrifice throughout our life together. I wanted to be nice to him and show him how much I appreciated his support, but my mind was so addled by low blood sugar and anxiety that I was often in a bad mood. Looking Back:
I think my anxiety was understandable in a situation when everything felt so out of control in my own body. Unfortunately, trying to change everything in my environment to suit what I needed was fighting a losing battle. Sooner or later I would have to change myself. Rock bottom
I reached my lowest point over Christmas in 2010. My fiancé was off work over the Christmas period, but it seemed like we weren’t getting on and I was constantly confused- it felt to me like we were continuously falling out but I wasn’t sure why or how to make things better. It also seemed a shame that I couldn’t be more positive and excited about our wedding (due to take place in November 2011). I found the whole thing stressful, and couldn’t help but dwell on the fact that after the wedding everything would just stay the same, I’d still be ill, so what was the point in celebrating anything? In the end this crisis prompted me to make an attempt to find out more about CFS, hoping that this time I might find something positive. Looking Back:
I had got into a routine where I could cope fairly well with my CFS on a day to day basis. Frankly, this was too comfortable and allowed me to stay stuck in the situation. It may sound harsh, but it took this crisis to give me the wakeup call I needed to take some positive steps. At last, an answer!
In January 2011 I bought the book “Recovery from CFS- 50 Personal Stories
” by Alexandra Barton (http://www.alexbarton.co.uk/cfsrecovery-stories.htm), and as soon as I started reading I realised that I could get better. I set myself a goal of being well before my wedding, and was filled with confidence that I could achieve it.
January 2011- May 2011: The end
Incredibly, once I bought this book, my recovery was really quick. It took some serious willpower, but I had that. I was absolutely determined. CFS was NOT going to be my life anymore.Diet
The first thing I tried was a low-carbohydrate diet- essentially eating meat, fish, dairy and vegetables while cutting out refined carbohydrates such as white flour and sugar, and some other foods like potatoes- I used "The Big Book of Low-Carb Recipes
" by Nicola Graimes (http://www.amazon.co.uk/Big-Book-Low-Carb-Recipes-Lifestyle/dp/1844831388), "Low Carbohydrate Diet for Health
" by Anne Charlish (http://www.amazon.co.uk/Carbohydrate-Diet-Health-Anne-Charlish/dp/0754809803), "The Healthy Low GI, Low Carb Diet
" by Dr Charles Clark & Maureen Clark (http://www.amazon.co.uk/The-Healthy-Carb-Diet-Nutritionally/dp/0091902541) to help me*. As soon as I started this diet my problems with low blood sugar disappeared. Within days my mood was stable, my mind was clearer and I felt far more motivated. My sleep returned to normal- instead of feeling tired all afternoon, going to bed feeling wide awake, and then struggling to wake up in the morning, I went to bed sleepy and nearly always woke up refreshed. My physical strength increased to the point that I could do 4 mile walks with my fiancé. I quickly lost the excess weight I’d put on. Within a matter of weeks, around 70% of my symptoms were gone. Lightning Process
Although the low carb diet helped me a lot, a few months in I realised that I still had some real issues with stress and anxiety. I would feel tired for days or sometimes weeks as I anticipated a stressful event, meaning that I still had to restrict my activities and was therefore unable to progress with life the way I wanted to. This was when I considered the Lightning Process (www.lightningprocess.com), and made the decision to give it a go.
I found the three day Lightning Process training that I did in May 2011 incredibly valuable. From the first day my remaining problems with tiredness disappeared, and over the following two days I made great improvements with my levels of anxiety and confidence. It paved the way for me to re-shape my mind to the way I wanted it to be, and ultimately led to the sense of liberation, empowerment and wellbeing that I feel today.The NHS CFS Service appointment...
My appointment with the NHS CFS service did eventually come through sometime after I had already recovered on my own. I cancelled it.
May 2011- March 2013: Back to the beginning again!
Having recovered, I was left in a strange situation. I wasn’t ill anymore but my life had totally changed. I couldn’t pick up where I’d left off, I basically had to start again.
I’m not going to lie, it was a challenge to figure out how to rebuild my life. I had always wanted to be a writer, but I was unsure whether this was still the right path for me. In the end I did some voluntary work for Sevenoaks Area Mind, and the wonderfully positive environment there boosted my confidence still further. Soon after I started volunteering I got married, and my wedding day was wonderful- all the stressful planning while I was ill had definitely paid off. And it was such an achievement for me to be well for it- to be able to look forward to the future with my husband rather than dreading more years being ill.
It was an exciting time of change, but although I enjoyed my voluntary work, soon I began to need, to crave, more. My mind was busy again. It was bigger, it needed more to fill it. Eventually, I made the decision to begin writing again. My husband got a new job and we moved house to a different part of the country. It was good to have a clean slate, a fresh start. A flat that I had never had CFS in. I learnt to be kinder to myself, yet also to push my boundaries and face things that scare me, because inevitably the feeling of overcoming the fear is better than the comfort you get from avoidance. There’s a lot of things that scare me, so I think this process might be lifelong. But still, this month I decided to start writing a blog (http://lkchapman.blogspot.co.uk) about my progress as a writer. This terrified me- people would be reading something I’d written! I did it. The world didn’t end. Instead it got even better.
If I was to give a few main pieces of advice from my experience, they would be:Be kind to yourself. Don’t feel like you don’t deserve to have a full, happy life because you do.
Take pleasure in whatever you can, however small (a sunny day, a nice meal, something good on TV), and recognise what you do achieve each day, even if it is only one tiny thing like getting out of bed!
Believe you can get better. If you believe that you can, and you really, really want it, then you can be stronger than CFS, and you can stay stronger than CFS. Don’t believe anything (or anyone) trying to tell you that you may never make a full recovery. Seek out positive recovery stories to inspire you and if you come across anything with a negative tone don’t read it.*Looking back, one comment I would make about the low-carb diet is that although it was important for me to be strict initially, I needn’t have worried too much about never being able to eat certain things ever again! I still follow the diet the vast majority of the time because I genuinely find it a fantastic and healthy way of eating, but as I don’t have any actual food allergies or intolerances and my body is now much stronger, if I really want a cake, I’ll eat a cake, and it’s fine. If I’d known at the start that I’d reach this point it would have been reassuring!
This recovery story is in categories: Chronic Fatigue Syndrome, ME (myalgic encephalitis), Post viral fatigue syndrome