Managing Chronic Fatigue Syndrome
Words by a wonderful woman who suffers with CFS herself
I’ve always packed as much into my life as is humanly possible. I would be running from one rehearsal to the next at school as I insisted on being in two plays at the same time. Not to mention choir practice, jazz band, sports; you name it, I was involved in it. You can imagine how unsettled I became at University when my body seemed determined to stop me doing everything I wanted, as I suffered from severe tiredness and joint pain. After a year of blood tests and Doctors appointments in 2008 I was finally diagnosed with Chronic Fatigue Syndrome (CFS). It is estimated that around 150,000 people in the UK have CFS and diagnosis is not simple. This attack on the nervous system causes extreme exhaustion, muscle/joint aches and does not go away with rest. In severe cases of CFS, it can be completely debilitating. It often targets those with hectic lives and may be related to viral infections from your youth (I had glandular fever at school). With the way I had been feeling, I was glad to know it wasn’t something more serious but I was deflated when I heard from my GP that technically there was ‘no cure’. I was told I had to take a step back and do less of everything, which I found incomprehensible. The good news was I did not have CFS in its most severe form and I was comforted to hear about people who had learnt to manage with the condition and had eventually fully recovered.
Now, four years on and after a lot of lifestyle trial and error, I want to share some tips that have helped me. By making some changes and learning how to manage and pace my lifestyle, I am now even able to run my own online business and feel as healthy and happy as ever.
Exercise – the worst assumption I made was that exercise should be avoided – it is in fact the complete opposite, introducing moderate exercise has been a huge benefit. I was advised to undertake graded exercise, a couple of years ago my body would not have accepted this but now I walk for 30 minutes a day no matter how I feel. I go first thing every morning, which I find is also a great way to gather your thoughts and plan the day. For me the consistency of this slow burning exercise helps keep the aches in joints and muscles at bay. If I don’t go for a walk one morning, I’ll feel worse the next. I also do pilates. Pilates is a great way of strengthening muscles without over doing it and (having saved my pennies) I am joining a gym with a swimming pool so I can do lengths in the mornings before work.
Energy food – It’s tempting to reach for sugary foods thinking that they will boost your energy levels but for me this was the worst thing I could do – it would give me a short burst of energy followed by a come down. Blueberries and grapes are my new sweet treat along with dark chocolate (70% cocoa or over). It gets rid of those sweet tooth cravings whilst being a lot better for you and is proven to actively help chronic fatigue sufferers. Another tip is to replace sugar with nature’s sweetener where possible – Honey (Manuka is best as it is naturally antibacterial). I try to be wheat and dairy free, which takes a lot of will power, but in doing so I have been introduced to a whole new range of foods that I would never have tried before. These not only help sustain my energy levels but also give me the nutrients my body needs. Eating little meals often also helps ensure a constant energy supply. Wheat free pasta by Doves Farm is a lifesaver as are their wheat and gluten free flours for baking! I’ve never enjoyed cooking and baking as much as I do now even though I (normally) stick to the dietary requirements.
Water! I, like many other people, find drinking the recommended 8 glasses of water a day quite a challenge and yet I could overdose on tea very easily! I’ve replaced half my daily tea intake with hot water and a slice of lemon. I find sipping hot/warm water much easier and it doesn’t feel like such a conscious effort!
Stress – Stress and Anxiety naturally peer their nasty head round the corner when dealing with CFS and ironically they play a major role in further zapping energy and triggering aches in muscles and joints, headaches etc. I found writing things down when they were worrying me was a great way of being able to put my mind at rest. My GP also recommended Cognitive Behavioral Therapy (CBT), which I found incredibly helpful. CBT teaches you to put situations into their true context – ‘What’s the worst that can happen?’ Simple changes to the way you deal with stressful situations make a huge difference – I found this technique especially helpful when setting up my business.
It definitely took me time to realize that just ‘plowing on’ as I was, would not make the fatigue disappear. I have made lifestyle changes and have also been lucky in that my symptoms have slowly reduced and allowed me to move forward. I live as busy a lifestyle now as ever, I just do so in a controlled manner – keeping an eye on my diet, getting enough exercise and rest and dealing with obstacles in a positive way. Although these tips are things that I have found helpful in coping with CFS, I like to think that they are all things which would help anyone lead a more hip and healthy lifestyle!
Hip and Healthy – Suggested Alternative Treatment:
The Lightning Process – A therapeutic treatment for auto-immune diseases that has been proven to be a very effective; particularly for sufferers of ME and CFS. We asked a recent participant of the programme what they thought about this supposedly life changing course…
Caroline W has been suffering with CFS for over 30 years. Just like our lovely anonymous writer, Caroline has always been an extremely physically active person and so this has been a particularly debilitating time for her. She heard about the Lightning Process through a fellow CFS sufferer and took the course in December 2011:
1.What is the Lightning Process?
The Lightning Process (LP) is a training course, it is not a therapy. It is based on a combination of approaches from osteopathy, NLP, and life coaching.
2.Which course/practitioner did you choose and why?
All LP practitioners are accredited by the creator of the process, Phil Parker. I chose a local practitioner, whose website gave me confidence, as the practitioner herself had suffered from severe CFS, and had recovered through LP, which gave me a great deal of confidence, and convinced me that the LP was worth a try.
3.What is the success rate of LP?
The practitioner I saw claimed a record of 100% success, but the LP website suggests approx. 82% of participants have successful outcomes from LP.
4.How long is the course? Are you supposed to keep up the approach once you have finished?
The training is an intensive 3-day course available as an individual or as part of a group. The purpose of the training is to provide you with powerful techniques to practice on a daily basis.
5.Does this mean that you are given ongoing support after the course has ended? What form does this take?
Practitioners will usually offer a 30-minute follow-up, plus some telephone support within the cost of the initial training.
6.What makes it different from ordinary life coaching?
Life coaching is normally about motivation and decisions; LP is a set of techniques designed to teach you how to adjust your unconscious thought patterns, which can have a profound effect on your physical well-being.
7.Do you feel that it has worked for you?
In some ways, perhaps, but certainly there are no guarantees, and it is not a cure-all. It requires constant practice and rehearsal of the techniques, which takes time, and requires a degree of energy (usually lacking in CFS sufferers!).
8.Would you recommend it to other people? If not/so why?
I know from my own situation that CFS makes you feel desperate and therefore sufferers are generally willing to try anything that may help them. Personally, I felt too self-conscious to be continually rehearsing the techniques, which require a private space (not easy in a family home!).
I decided, because of a complicated personal history, that it would be more beneficial for me to undergo this training on a one-to-one basis, which was exceedingly expensive, and really too intensive for me.
From a cost point of view, (unless you have a spare £1,000) I would not recommend it. Also, I selected my practitioner on the basis of the training taking place in London, but the follow-up has been offered in Devon (not very practical!).
9.What is the most important thing that a sufferer should know before considering to take the course?
LP is a training course, it is not a therapy. Read the book (by Phil Parker – available on Amazon) and decide if the training looks right for you. You need to find a practitioner you can fully engage with.
10.What advice would you give to people who are carers, long term partners or family members of someone with CFS or ME?
Unless you have suffered from CFS, it is almost impossible to understand the limitations it places on those who suffer from it.
Patience, love, and support are the best things to offer, and a belief that the sufferer can get better in the long term.