CFS/ME and depression

If your journey to diagnosis was anything like mine then it may have been that your doctor tried to label you with depression. For me this was desperately frustrating. With a history of depression in the family and several points in my life where I had suffered from depression, I clearly knew the difference. Following the onset of ME/CFS I was depressed because I couldn't do anything, rather than not being able to do anything because I was depressed. My doctor asked me a series of questions about being tearful and showed me the computer screen highlighting past depression, as though this was somehow evidence. Similarly when I went for my assessment for continued incapacity benefits a different doctor again tried to ascertain if I was suffering from depression by asking me if I was tearful for no reason. I smiled and remarked that I thought having become abruptly disabled, lost my career, needing someone to take care of me 24/7, and not being able to leave the house on my own was perhaps a justified reason for tears!

However, although ME/CFS is a separate condition from depression, I think it is important to also acknowledge that depression often exists alongside the condition. And why wouldn't it - if you are not able to do many of the things that you associate with being you it may take some time to adjust, this is only natural. Along with the host of things that I feel are missing from our general education in the west, (I feel we should teach children to manage anger, build self-esteem, self-evaluate, relax, effectively goal set etc), we are also not taught how to cope with being ill. In fact if you look closely at our culture, illness has a certain underlying taboo. This often stems from pressures in the work place where it is often frowned upon to take sick leave as others generally have to cover for you. No employee wants to take a sick person on board the team and your past sick record is always reviewed before you are allowed to take on a new role. Employees often speak with resentment towards colleges that are frequently sick, and some companies employ shame or guilt tactics to ensure better attendance, even when employees are genuinely sick. So it is easy to fall into this general feeling that we are letting someone down when we become sick - not pulling our weight or doing our bit. This feeling can be compounded when we have ME/CFS, particularly because of the lack of understanding by the general medical profession and the way we have to fight for benefits and recognition of our illness. And then of course there is the great loss we suffer - I love to dance, drum, sing, socialise, exercise, practise yoga, walk, go to gigs and generally celebrate life. This is a far cry from the 20+ hours per day that I had to spend in bed at the start of the illness.

Let us also remember the chemistry of our illness. Many pioneers highlight the involvement of the hypothalamus in the condition and this gland affects most of our body chemistry. CFS/ME seems to have a particular affect on the adrenals for many people, and we are very often in fight or flight response. The aftermath of this is usually physical and emotional exhaustion, which can quickly spiral into depression.

So when depression strikes and you don't have any reserves due to ME/CFS, it is really challenging to drag yourself out of it. However, I feel that addressing the depression that you feel around the illness is one of the most important thing that you can do to aid your recovery. THIS IS NOT BECAUSE I FEEL THAT ME/CFS IS ALL IN THE MIND! However, I think the psychological aspect has a huge bearing on the physical aspect - even Western medicine understands more and more that the mind affects the body and the body affects the mind. There have been countless medical studies on how positive thought and a belief in recovery help to overcome even the most severe conditions, such as cancer. In future blogs I will be exploring these issues further but for the time being it is important to understand that if you believe you will get better then you stand a much better chance of recovery that if you believe you won't, and depression, with it's many negative messages, can play a huge role in jeopardising your recovery.

Furthermore, the host of food intolerance's or allergies that you may suffer from because of the condition may also be contributing to your elevations and dips in mood (I am challenged by wheat, grains, sugar, caffeine, chocolate, alcohol, citrus, some dairy, potatoes, MSG sweet fruits, plus a host of chemicals and perfumes, so I can empathise if you also suffer). Intollerances can steal your energy and make you feel very unbalanced and it makes it worse that our body chemistry makes us addicted to the foods we are allergic to, due to a release of endorphins when we eat them. Sugar and caffeine also play particular havoc with your adrenals, and can severely affect the mood and balance of someone with CFS/ME.

And let us not forget the effect that severe pain has on your mood. If you are in extreme pain with your condition it can be very challenging to remain positive and optimistic.

Personally, when I slipped into the dark hole of depression my main experience was fear. I feared death, the doctors, losing my partner, financial ruin, and I worried constantly about problems within my family. I seemed to find within myself a current of negative energy that would perpetually feed itself and in my weakened state I almost forgot that this was a choice. I was irrational, fearful, neurotic, and I kept envisaging the worst possible future I could imagine. I felt frustrated about my situation and I felt like I'd been robbed of using all the skills I had to help others. In short I felt pretty damn sorry for myself! However, what I realised was that there was a lot of work to be done emotionally on myself. As I explained in my introduction, there was a definite turning point, and I have since discovered many tools that have helped me to combat this.

I had one session of Life Coaching and 2 sessions of Reverse Therapy and these helped no end to clear a huge chunk of this. I also tirelessly looked for other things I could do to help myself. Subsequently I came across Emotional Freedom Technique (EFT). I have been blown away by this technique which is easy to learn and only takes one minute per round to practise on yourself. It basically involves tapping on various points on your meridians whilst focusing on a specific problem you have. It can be used on anything - all physical and emotional problems - and works by releasing the tension in your nervous system created by a problem or illness. Since I've learned it I can cope with the depression and the pain as it eleviates them in minutes and it's great to have something in your tool bag to be able to do so. You can also use it to clear your painful memories one by one - one of my problems was that I allowed myself constantly to be bombarded with invasive thoughts from the past and this was a continuous drain on my energy. In future blogs I will talk in greater detail about EFT and review various books that have helped with the condition. One such bood is The Healing Power of EFT and Energy Psychology: Revolutionary Methods for Dramatic Personal Change

Another thing that I've found really helpful is Energy Medicine - there's a great kit available that is very user friendly and teaches you the basics of Energy Medicine without having to read too much. It contains a DVD, lovely coloured cards to remind you of the exercises, an audio CD, a booklet and a crystal. It is called The Energy Medicine Kit by Donna Eden - a fantastic and remarkable lady who healed herself of her own physical illnesses. Donna also has a book if you want to look at the subject of energy within the body more deeply - Energy Medicine: How to Use Your Body's Energies for Optimum Health and Vitality. It's quite an big book but is emensely informative. Despite my training as a shiatsu practitioner, yoga teacher and reiki practitioner, I was completely blown away by this book. There are techniques for testing different energy systems within the body and techniques for for correcting weak areas. The five minute energy routine has allowed me to stabalise my energy no end (this can be found in the book or in the kit), and when you are stronger energetically you are much more likely to remain positive and optimistic.

Here are some other ideas for keeping your mental health in good order whilst you recover from ME/CFS:

1. Do some work on your depression on your good days - learn your triggers and plan for ways to manage it if it does occur.
2. Learn EFT. Use it to clear the memories that make you depressed and the feelings that you have about yourself the contribute to your depression.
3. Be aware of any food intolerences that are contributing to anxiety/depression. Do your best to find replacements or alternatives for these foods, rather than just avoiding them.
4. Where possible, surround yourself and connect with positive people. It's good to find ME/CFS friends who are keen to overcome the condition and make improvements, rather than those that dwell on the negative side of the illness. Try and minimise spending time with people that drain your energy and connect as much as possible with those that feed your energy.
5. Learn to assert yourself. I have found that countless people with ME/CFS have issues with asserting their own needs. In a future blog I will address this issue in more detail.
   
6. Read uplifting literature - search for stories of people that have got well and recovered - a great resource for this is found at http://www.alexbarton.co.uk/cfsrecovery-stories.htm where Life Coach Alex Barton, who herself has recovered from ME, has collected 50 stories from other recoverer's to inspire you on your journey to health.
   
7. Watch some comedy - the more you laugh the better. Laughter is truly a great healer and expose yourself to it as much as you can. Even if you don't have the energy to laugh, comedy will connect with something inside you and raise your spirits.
8. Allow yourself recovery time. Learning to see illness as your teacher rather than your enemy and letting go of preconceived ideas that you "should" be healthy will lay the ground work for physical and emotional healing.
9. Try and have some fun everyday. Reverse Therapy teaches balance, variety and fun as the main building blocks for getting better. Although it might seem challenging and be the last thing on your mind, don't discount or overlook the importance of fun in your journey to health.
10. Try and get some balance in your life. Even if you've only got the energy to do a couple of things a day, try and ensure that you still see yourself as a whole person and look at all aspects of living. Make sure it's not all grind. In future postings I will draw from some tools I learned in Life Coaching which will help you to look at the balance in your life. Remember, we usually get sick because something goes out of balance and restoring balance can help you on a mental, physical and emotional level.
11. Learn some relaxation techniques that you can do whilst laying down and practise them regularly. Releasing tension from the body subsequently releases tension from the mind. Don't wait until you are tense to practise the techniques, practise them daily if you can. See 'Relaxation 1' on this blog where you will find a description of a technique.
12. Get some help if you need it. An outside perspective can often help you to identify your patterns. Learn to take help from others in order to develop your own coping strategies rather than letting others be a crutch when you are depressed.
    
13. Picture yourself healing and do not allow thoughts such as "I'll never get better". Each night as you fall asleep, or after a relaxation session, visualise your body healing and see yourself getting better. In this way you are using your mind as a positive tool to help you with you health rather than allowing it to dominate your illness.
14. Forgive yourself if you do slip back into depression. Do not self-punish or blame yourself.
    
15. Be gentle with yourself. Needs no explaining!
16. Learn to forgive everyone and let go of the past - harbouring bitterness and resentment feeds depression and is very harmful to mind, body and spirit.
17. Make a contribution to others if you can. It doesn't matter how small it is, but making a contribution to others can help you feel more connected and improve your self-worth. If I can't manage anything else in the day, I like to bring my partner breakfast first thing in the morning when he's really groggy and I'm at my best. Other suggestions are things like emailing a link or an article to a friend or sending a positive email to someone who is really struggling.
18. End the day with a glad-of-the-day. However much of a struggle the day has been, try and find something to focus on that has been positive. You can make a note of these, affirm them out loud, or share them with someone else.
19. Be greatful for what you do have rather than focusing on what you don't have. Again, this is something that is easier said than done when you are depressed but it is something to aim for, even if you do find it challenging. It is a good idea to make a gratitude list.
    
20. Try to stay present rather than dwelling on what your life was or what it could be. There are many books to help you do this. You might find books by Echkart Tolle to be helpful. He gives a very unique view on presence, and often uses humour and helps us to laugh at ourselves. His tapes/CD's may be more appropriate as they are full of humour and easy to access if reading is a challenge.
    
21. Remember that although this is a very challenging condition, there are lots of worse conditions!! When I'm feeling sorry for myself I try and remind myself that at least I haven't got Cushing's Syndrome. This terrible disease includes hair thinning, psychosis, moon face (masses of fat round the face), cateracts, acne, hypertension, peptic ulcer, kidney stones, hyperglycemia, menstural disturbances, tendancy to fracture, osteoperosis, tendency to infection, vertebral collapse (of spinal column), central obesity (masses of fat round the stomach), stretch marks, muscle weakness and wasting. Bet you feel better already!
22. Assess your environment and work out if it is draining you. Housework is a real challenge when you are ill but you may find that if it slips it will add to your negative feeling. If you can't manage anything else, try and keep a tidy bedroom. Another good tip from Feng Shui is to try and keep things off the floor. Having clutter on the floor drags your energy downwards and can contribute to depression.
23. An interesting book is The Power of Negative Thinking.This takes on a whole new perspective on the purpose of negative thought, suggesting that we use negative thought as a protective mechanism. In this book the author discourages New Age positive thinking which he feels is too challenging if you feel negative. Instead he teaches working on your feelings first, and ultimately positive thinking will follow when your feelings change. It's a breath of fresh air from the usual affirmations and forced positive thinking, if that isn't where you are at present.
24. Watch the DVD The Secret. This DVD needs a whole article to itself but will completely change your perspective on the world around you and how you interact with it!! Based on the Law of Attraction, it gives a very scientific perspective on positive outlook and abundance. Even if you are not usually inspired by life changing approaches or materials, you will be blown away by this one!!
25. Learn to love yourself. Life is to precious to constantly fret about whether or not you are perfec, whether you said the right thing, whether people like you, etc. Learn to become your own best friend and treat yourself with the same love and respect that you treat others. You deserve it.
26. Take VegEPA. The depression that you are suffering from may be as a result of an essential fatty acid deficiency, and Professor Puri's book Chronic Fatigue Syndrome: A Natural Way to Treat M.E. highlights the role of essential fats in the recovery from CFS/ME.
    

Don't try to do and do all the above at once! If you are very tired, fatigued or low, please don't be overwhelmed by the list above. Instead, pick one thing that you feel would benefit you most and work on it when you can. If you are able to practise positive thoughts and employ optimism then do so asmuch as possible, as this will benefit your journey to recovery no end. However, please don't beat yourself up if you aren't able to tap into positive thought just yet - go easy on yourself and take your time.

It is your personal choice if you choose anti-depressants, and an understandable course of action for someone who is weak, tired and depressed. I have often heard it said that some people need to chemically rebalance and I know in my own family they have been a great help to some of my family members. However, it is my hope that if you do choose them that you do so when you have explored all other possibilities. A very good book that highlights natural alternatives to depression is Depression-Free for Life: An All-Natural, 5-Step Plan to Reclaim Your Zest for Living . This book highlights a combination of supplements that you can take to help combat depression. There is also an excellent 15 CD course from the Midwest Center - this is expensive but has helped thousands of people to overcome depression naturally - if you have the money and the energy to take this option it is a good resource, taking a cognitive behaviour approach, but very empowering as you work through the course on your own. My concern about anti-depressants are numerous. Sometimes it is very hard to get off them once you have started them, and like many drugs they have side effects. If you have ME/CFS there are certain ones that work better than others - I think Action ME may be able to advise you on this. However, my main concern about our western approach to taking anti-depressants is it often masks the problem. Depression is often a marker that something is wrong - it may not necessarily be something in your external world, but rather your thought patterns or your conditioning from childhood. If you can face the thing that is making you depressed and move through it then you will feel stronger. If you mask it with pills there will come a point where you have to face it. You may not feel strong enough whilst you have ME/CFS but on the other hand if you do manage to face it and move through it then you might have more energy and feel better.

None of the above is designed to overlook the fact that ME is a physiological condition. However, if you take the attitude that you are going to do all you can to keep yourself as positive as possible, then you are ultimately going to affect your body chemistry in a positive way. Seek medical advise by all means, but be your own master in the choices that you make about your recovery.

CFS/ME what's the difference?

There seems to be lots of confusion over whether CFS and ME are two different conditions, or the same illness. I would like to give my opinion on the subject.

As I search the Internet I have noticed that there are a number of differing opinions. There are those who use the term ME/CFS interchangeably and to mean the same illness, whilst others claim that ME is a different and more debilitating condition than CFS ; that ME is a more long-standing illness. People in this camp claim that ME is possibly caused by a viral infection where as CFS is expressed when an individual burns out physically. It is almost as if an elitism exists - an attitude that makes me very uncomfortable.

CFS and ME may initially be different illnesses, but if this is the case I think that it is important to note that their outcome is the same. It may simply be that the initial causative factor differs - i.e. an individual becomes debilitated after a virus or an individual becomes debilitated after burn-out. However, pathologically (i.e. in the body) the condition is expressing itself in the same way, whatever its label.

Lets take my own diagnosis for example. I was diagnosed with CFS after a series of multiple stressors - it seems that my body just gave up on me. Taken on face value we could assume that the stresses caused the CFS. However, this is a very Western medical way of viewing the illness, which does not connect past illnesses with present, and views disease in terms of what is presenting now or the symptoms, rather than looking at the whole person. However, if you go for a Perrin treatment, or visit the Bristol Frenchay Centre for ME and CFS, a complete history is taken of your illness from birth to present day. Why is this relevant? Because ME/CFS is a progressive illness and should not just be viewed in terms of the main trigger.

So if we take a deeper look at my medical history, it becomes clear that the point in which my body gave up following multiple stressors was not the start of my condition, rather it had been building for many years and this was it's crescendo. Like many ME/CFS sufferers I had early tonsillitis as a child - so bad that the poison from my tonsils was causing blisters in my stomach lining. I had eczema from birth, suffered a really intense bout of measles, and was what would generally be labeled as a 'sickly child'. During my teens I was constantly off from school with unexplained illness - general malaise and a severe lack of energy. This occurred so frequently that there was Social Services involvement. Just before my twenties I got a cold sore in my eczema which spread all over my body - I had over 1000 sores and was in isolation in hospital for some time. It took me 3 years to get my A-levels instead of 2, and 4 years to get my degree instead of 3. I was often tired and lacked energy, and would alternate between this state and being a complete 'fire ball'. At times I seemed to have spurts of uncontrollable energy and would be completely over-excitable. When my energy was down I fell into the cycle of using stimulants to keep me going, and lived on a rollercoster of adrenaline and energy crashes. When I did finally qualify as a teacher I always had the worst sickness record out of all the team. I never made it through a single half term without some time off for general exhaustion. I had severe blood sugar problems for most of my adult life although I was tested for diabetes many times and the tests became fine. 8 years before I had my major crash with CFS/ME I became allergic to alcohol, caffeine, sugar, wheat, and my digestion became very volatile. I left one teaching position in about 2003 due to exhaustion and spent 18 months recovering. I finally had to walk out of my position as a performing arts lecturer at the beginning of 2006 as I simply could not carry on. Also, six months before I became severely ill with ME/CFS I did have a very severe virus that was so intense that I hallucinated for days. This was the beginning of my decline and I had severe muscle pain and dizziness every time I stood up for the next six months before I finally crashed.

So the questions can be asked: is the CFS that I suffer from a simple matter of burn-out or is it an accumulation of all the illness I have suffered over the past 34 years? Was the initial virus six months before my crash the causative factor or was it the fact that I was so burned out physically that I was not able to fully recover from this virus? I know from talking and connecting with many ME/CFS patients that my story is quite a familiar one. So if ME and CFS are different conditions how can we tell which one I have if we don't have a reliable test to differentiate between the two? But more to the point, I feel that it is not important to me whether I carry the label of CFS or ME. What is important to me is what I do to get better. We could all waste a lot of energy arguing the corner about which condition we sufferer from or whether it's the same condition, and we could all play the "who's worse off than who?" game. But that energy would be put to a far better use if we spent it on ourselves and put it towards overcoming the condition - whatever you want to call it. It is my hope that we can move forward together and overcome this unhealthy attitude towards the labeling of the condition. We often feel isolated as it is without dividing among ourselves.

Wishing you health, whatever your 'label' may be.

Perrin Technique Part 2 - Shirley Kay

If you are considering undergoing the Perrin Technique for CFS/ME and you're in Bristol, then you are in luck! Shirley Kay is the practitioner for the technique in Bristol and you will be very safe in her hands. Shirley studied Oesteopathy and Naturopathy at degree level and it appears that she hasn't stopped studying since! She continuously updates and develops her wealth of knowledge and is qualified in a host of therapies across the board. As well as being highly skilled in the Perrin Technique she is able to carry out allergy testing (through muscle testing), and assess your metabolic type to ensure you are getting the right balance of macro-nutrients (essential for health). Additionally, Shirley is trained in Iridology and is able to assess the strength of various internal organs and systems through the pattern of your iris. She uses a host of other Naturopathic techniques tailored to your individual needs, in order to support your journey to health. With the Perrin Technique, the introduction of Metabolic Typing into my diet, and a homeopathic remedy for my dust allergies, I have started to make good progress.

I look forward to my weekly visit to Shirley - as well as being an excellent practitioner she is a truely lovely human being. Her warmth and positivity are infectious and she helps me to keep focused on the positive side of healing. Quite often if I have a dark moment during the week between visits and I recall something that Shirley said and am able to refocus myself. We all know that the journey to health for CFS/ME patients can be a lonely one, and it is really good to have someone on your side who is rooting for your health and contributing to it at the same time.

When I first started the Perrin technique I felt extremely nauseous and uncomfortable - I take this as a good sign as if the treatment was a placebo then this would not be the case. However, over 3 months into the treatment I have moved through the initial wobbliness that it created and feel like I am starting to make progress. Good signs are that the hard lumps in my breasts have become less painful and have started to shift, and my energy is more consistent. I would definitely recommend this path to fellow sufferers, and particularly recommend Shirley to those in the Bristol area. Check out Shirley's website:

www.shirleykay.co.uk

and contact her on info@shirleykay.co.uk
07870 767439 or on low call 0845 0091249