journaling your recovery

Writing a journal is an important part of the recovery process with any illness. I feel that it is crucial to write a journal, not so that you can have a record of where you have been but more that you can process your thoughts at the end of each day, focusing on the positives and analysing the challenges. It is an excellent tool for personal development and sometimes you may find that you don't know what you think until you write it down. It therefore clarifies your thought processes. However, in my experience I have found that many people are not sure how to journal. I have also found that there is a danger of using the journal to exemplify the negative aspects, rather than analyse them. I have fallen into these traps when I have been in more depressive phases of the illness. I also realise that when recovering from ME/CFS it can take a lot of energy to write in a journal daily. However, as I have been writing a journal for some time (not always consistently), I have created a formula that really works for me, so I would like to share it.

Firstly I write my journal at the same time every night. This is because I am trying to develop some kind of routine. So by 10.30pm I make sure I'm in bed, and I write the journal before relaxation time and lights out at 11pm. This helps to sum up the day and focus on the positive in the day. The formula for my journal goes like this:

1. GLAD OF THE DAY! I start my entry with this title. My glad of the day is the best thing that's happened all day. Some days it is making a new contact, others it's an email I received, others a goal I achieved, sometimes a visit from a friend, others a realisation that I've had, and sometimes a lovely moment that I've shared with my partner or a friend.
   
2. OTHER GREAT THINGS IN THE DAY. I then make a simple list of all the positive things that have happened in the day. This is a great way to round up this section as when I go back over the day I am usually quite surprised at how much I have actually achieved. I list anything here from "I ate healthily", to "I did some cleaning up", to "I read an inspiring article", to "I stayed calm in a stressful situation." The key here is to celebrate the little things that you manage and to build on them.
   
3. GOALS. I usually have a goal of the week. I believe that small, achievable goals are very important when you are overcoming long term illness. Past goals have included finding healthy snacks, walking for 5 mins per day, having 3 structured rests per day, only doing taxing activities for 20 mins at a time, etc. I use this section to review my current goal. If I haven't achieved it I ask myself what I could have done differently in order to achieve it, so I have a kind of action plan for achieving it in the future. I only move onto a new goal when the current one is firmly established.
   
4. OBSERVATIONS. I make 1 or 2 observations about how I went through my day, and any triggers or issues that arose. I do this as though I am observing myself from the outside. Again, this is not to criticise, but to help me move forward.
5. "TODAY I CAUGHT MYSELF......." The purpose of this section is to catch myself at any negative thinking. In the past I have been quite harsh on myself, so I use this section to check that I am keeping my thinking positive. However, I must stress that if I do catch myself negative thinking then it is not an excuse to beat myself up! Rather I celebrate the fact that I am becoming more self-aware, and moving towards being kind to myself all of the time!
6. THE THING I LIKED MOST ABOUT MYSELF TODAY. This is a special focus on something that I have achieved on a personal level.
   
7. MY FOCUS FOR TOMORROW. I've found it helps me when I wake up in the morning to have a focus, so I don't just drift into a task and then get lost in it!! This is a very gentle way of forward planning and trying to create some structure. Sometimes my focus for the following day is to get a task done whilst taking adequate rest, other times it is to structure the day so that I can have a visitor, other times it is to go our for a treatment and to rest on return. I have found with a bit of forward planning then I feel much clearer. Sometimes if I know the day is going to be challenging, I mentally rehearse the next day, and include rest time and food stops in my mental rehearsal. I do not create a rigid structure (although I used to try to!) There is always room for some change or spontaneity.
   

This may all seem like a lot but if you do choose to follow this structure it soon becomes quick and easy to make notes, providing you are able to write. You can simply shorten the headings to GLAD, OTHER GREATS, GOALS, OBS, CAUGHT, LIKED BEST, FOCUS, and make quick notes. If you are unable to write, and there is no one to make notes for you, or if this all seems too much at your present stage in the illness, a good place to start is to just say your glad of the day to yourself at the end of each day. Even if all you managed was 2 steps around the living room, celebrate this and build on it. As always, your mental attitude is everything on your road to recovery. Happy journaling!

Prof. Bassant Puri and VegEPA

I wrote a testimonial for the product VegEPA. This was written in Nov 2006. I thought I would include it here as the product is still very much part of my recovery programme. There have been lots of sceptics who have attacked Professor Puri's research on the VegEPA so before you read any further I would like to reassure you the Professor Puri IS NOT BEING PAID BY VEGEPA TO MAKE THE STATEMENTS HE DOES ABOUT THE PRODUCT. He has been falsly accused of this. Professor Puri is one of the few Dr's in the National Health Service that is wholeheartedly fighting the cause of those with ME. He is a kind and humble gentleman, a genious, and a compassionate human being. Please be reassured that HE ONLY RECOMMENDS VEGEPA AS IT IS THE ONLY PRODUCT ON THE MARKET THAT HE HAS FOUND TO WORK FOR M.E. PATIENTS. This is because it is the only DHA free EPA supplement and he has found high levels of DHA to aggrevate ME patients. Information in my testimonial will support me own personal experience of this.

"I started taking VegEPA about 6 weeks ago after reading the CFS/ME book by Professor Puri. I have had a severe case of ME for around 12-18 months. By severe I mean that I had to give up my career as a performing arts lecturer, I was unable to work, I had to give up my flat and become completely dependant on someone else to do even minor tasks for me. In fact, there have been times when I have been too weak to put my own socks on and when I have to crawl upstairs and go to the toilet. I have been so ill that I am under assessment for disability living allowance (a process which takes many months). Previously I danced and exercised every day, did yoga daily, and was very active and physical in my job as a drama lecturer. I was the kind of person that was always on the go, full of the joys of life and often described as "a fire ball of energy".

My story with regards VegEPA reinforces all the things that Prof Puri says about the product in his book. This is because six months before I started taking VegEPA I had my essential fats tested privately at Biolab in London and my omega 3 was extremely low. The Naturopath that tested me insisted that I try a non-vegetarian source of omega 3 (I have been vegan for many years), and recommended a product called Bioforce which is high in DHA and EPA. The product made me severely vomit, which backs up what Prof Puri says in his book about DHA for ME sufferers, although I didn't have this information at the time. I assumed that it was because I hadn't eaten fish for about 20 years and therefore had no ability to digest it anymore. I stopped taking the Bioforce and went to ask my doctor what he recommended I should take. He called essential fats "peripheral medicine" and claimed that it was my choice whether I took a vegan source or a fish source. He believed essential fats were only relevant in cases of heart disease! I therefore turned to an American product called Omega Zen 3. This claimed to be the leading vegan product on the market and I checked the research of the company who claimed that they had many cases of people being cured of omega 3 deficiency with their product. It was being recommended by a leading vegan doctor in America whom I had the greatest respect for. I took Omega Zen 3 for about 6 months. To purchase it in the UK it was £17.99 for 40 tablets which would last me about 13 days. This product is pure DHA from golden algae. It did not make me vomit like the fish product but it did not make a jot of difference to how I felt. I was just about to go and get my essential fats tested again when I came across VegEPA and Professor Puri's research. I decided to wait and try this product first as in reality I still had all the symptoms of essential fat deficiency, so it seemed a waste of money to test again.

I started taking the VegEPA and I had outstanding results. Within a week I started to sleep through the night. My cognitive function became clearer. I became much brighter, in fact, so much so that several people began to ask me "what are you doing, as you look much brighter?". I attend a training for naturopathic nutritionalists once a month for a weekend and this is the only thing that I manage to do at present. The weekend is usually a terrible struggle for me and often ends with me going home early. I made it through the whole weekend quite easily after a month on the VegEPA and even my lecturer commented on how clear, bright and mobile I looked. I am usually in such severe pain by the end of the weekend that I can barely get in and out of the chair, and I shuffle around the classroom, but after taking VegEPA for a month I could get up and down and walk around the classroom quite easily by the end of the Sunday. At the end of the Sunday afternoon we usually have an examination session and I am usually too ill to even be in class by this point, yet on 4 weeks of VegEPA I was actually able to volunteer to be the one being examined - something I'd usually be in far too much pain for normally. It was obvious that many people were quite suprised at my volunteering!

Similarly, my Aunt came to visit and the purpose of her visit was to help me around the house. My mum had been down to visit only 4 weeks before I started taking VegEPA as my day to day tasks had built up and I wasn't able to cope. However, when my aunt came down, just 4 weeks into taking VegEPA, it was a different story. We were able to go clothes shopping twice in Bristol city centre - something I haven't been able to do since I became really ill with ME. We went to the theatre in the evening - my first time since I have had ME - and I sat through the whole performance without paying for it the next day. I was also able to teach my aunt to meditate - the first time since I've been ill that I've been able to do anything for anyone else when previously my whole world had revolved around helping others.

So generally, since taking the product, the pain in my legs has subsided significantly. This pain was completely disabling. My cognitive function has improved, my outlook is brighter, and I have been able to deal with my depression and the emotional problems that ME has brought me. I have not had a panic attack or spiraled into negative thinking whilst taking the VegEPA in the same way as I was doing before I took the product.

It is also important to note that after the first month, I ran out of VegEPA so I had to ration my supplies until my new order came. This was only a couple of days as they always send the product at lightening speed, but I definately felt worse in those couple of days without the support of the product. Sceptics might say that this was phsychological. However, anyone with ME will know what I mean when I say that the pressure started to build up in the back of my head and I got that familiar flu like feeling back that signifies a return of symptoms. It is therefore vital to take the 8 - 9 capsules a day recommended by Prof Puri, and to do so consistently. This product really helps so it's importat not to take it for granted when you start to feel well again.

This is still early days for me. Last week I was examined by Dr Perrin, the leading chiropractor in the field of ME, who has been curing people of ME for 17 years. He outlined my physical symptoms of ME - I have a deformed spine between my shoulder blades, my lymphatic system is so blocked that it is pooling in my breast tissue and has formed hard lumps, and my cerebro-spinal fluid is not flowing properly and therefore not taking toxins away from my brain. He gave me a score of 4 (ten is well) and estimated that it would take 18 months to 2 years for me to get well again. It would be interesting if he had scored me before the VegEPA - I am quite sure I would have been at least a 3 (where 2 and 1 are completely bed ridden). I am now receiving treatment through Dr Perrin and it will be also interesting to find if the VegEPA speeds up his very skilled estimation of how long it will take me to recover - he also now recommends the product.

I would recommend VegEPA to anyone suffering from ME. As we all know, there is not one single magically cure for the condition, but this product has helped me control my symptoms so significantly that I feel like a human being again. It has given me hope. I feel different in a very positive way. In fact this testimonial itself is proof of my improvements. I have written it in an hour and a half when previously it would have taken me a week or more to get so much information down - the future is very bright!".

You will find more information on Prof Bassant Puri's research in his book:

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.