Need any self-help advice?

Need any self-help advice? Email me at me.cfs.selfhelp.guru@gmail.com. Questions and answers will be posted on this blog where appropriate.
Follow me on twitter: @MECFSSelfhelpGu and like my page on facebook: MecfsSelfHelpGuru

All information posted on this blog is shared with the understanding that self-help is all about taking responsibility for your own healing journey. This illness affects each one of us in different ways and with different levels of severity. Only you can be the expert in how this illness affects you. You must make up your own mind as to whether any of the advice I offer could be helpful to you and take responsibility for any choices you make. If in doubt consult your doctor.

Sunday, 20 April 2014

Your Views on How Coaching Could Help with ME/CFS

Today I’m writing to ask for your help. I’m planning on writing (and delivering) an affordable group coaching program to help people take their lives back from ME/CFS. I have a clear idea about what I think could be a part of the program, but I’d like to hear how you think you could benefit from such a program.  I want to design a program that will truly meet your needs. I’ll also do my best to address these issues in future blog posts.
  • What do you struggle with the most?
  • What are your biggest challenges?
  • What has been the most difficult thing to come to terms with?
  • What are you most worried about?
  • What skills might you need to learn that would help you manage this illness better and live a more fulfilling life?
  • What do you want the most?
  • How might you benefit from a coaching program?
I’d be really grateful for any feedback/ideas either through my comments section below or by email (me.cfs.selfhelp.guru@gmail.com). Any of you who have been following me on twitter will have noticed I’ve already started to ask these questions. If you are on Skype, let me know by email if you’d be willing to be interviewed about what you’d like out of a coaching program.  I’ll offer a 10% discount voucher to the first 6 people I get to interview on the subject. (For various logistical reasons I am unlikely to start such a program before September of this year.)
To get you thinking here are some of my thoughts:
Coaching could cover 4 main areas:
  1. Illness management-damage limitation: e.g. identifying and avoiding what makes your condition worse; learning to live within your energy limits; relaxed effortlessness.
  2. Illness management-optimising conditions for healing: coaching to optimise sleep, diet, movement, meditation e.tc.
  3. Dealing with the emotional impact: dealing with loss; coping with other people’s attitudes; copings with anxiety and low mood; challenging limiting beliefs.
  4. Cultivating happiness and fulfilment: learning new low-energy ways of being happy; rebuilding self-esteem and reconnecting to your core being; identifying your unique talents that don’t depend on high energy;  future planning and goal setting.
Please bear in mind that at this stage these are just thoughts. This will be a work in progress. Would this kind of program appeal to you? What would you be willing to pay for?

Sunday, 13 April 2014

ME/CFS and Setting Up the Day Well

I have quite a complex morning routine for setting up the day. It has various elements and takes a while but it has so many benefits that not doing it seems unthinkable. I usually wake up feeling quite unwell. I always feel dehydrated, I often have a headache and sometimes a sore throat, and my lack of energy feels like a ball and chain. Most days though, I don’t pay too much attention to feeling unwell because I know that by the time I’ve finished my morning routine I’m going to feel so much better. I just throw myself into it. However when I’ve been below baseline for a couple of days and wake up feeling even worse than usual I can also be quite grumpy and miserable.

Burning essential oils
First thing in the morning I set the oil burner going with a blend of lemon, thyme and tea tree oils. I’ve experimented with various blends with the aim of tackling my sore throat, headache and boosting my immune system. If my headache is particularly bad I might use peppermint and lavender instead of tea tree and thyme, but lemon oil remains a constant. These blends have evolved intuitively. I’m pretty sure they add something to the benefits of my morning routine, but even if they don’t, they make the room smell nice and give me a sense of indulgence and self-care. When I sit down to meditate I also add a drop of sandalwood to the blend to summon a sense of peacefulness.

Rehydrating with hot water
During my T’ai Chi practise I drink 2 or 3 mugs of hot water. During the day I tend to need to drink a lot more than a non-ME/CFS sufferer and I’m pretty sure that not drinking for 8-9 hours every night results in dehydration and poor lymphatic circulation. My theory is that we have more trouble detoxing than a healthy person. I find that getting my fluids topped up goes a long way towards curing my morning headache and boosting my sense of wellbeing.

T’ai Chi
At the very least I believe that my gentle T’ai Chi movements get my lymphatic system back on track and help my deal with the toxins that have built up over night. According to the theory behind Traditional Chinese Medicine these gentle movements can help release any blocks to the flow of vital energy (chi) around your body and balancing this flow improves health. Other aspects of the practise (breathing and attention) enable you to take on chi from the earth and the sky. Early on in my illness I found that my energy was always so much better on days when I did T’ai Chi compared to days that I didn’t and I soon became very motivated to do it every day!

Meditation
By the time I sit down to meditate my headache and sore throat are usually a lot better if not already absent all together. Now is the time to set myself up mentally and emotionally for the day. My morning meditation usually includes a self-healing practise, followed by a few minutes of quiet stillness.

Intention setting
At the end of my meditation I set my intentions for the day. These usually include the intention to approach all tasks with relaxed effortlessness and the intention to be loving, light-hearted, peaceful and joyful. On days when I know I’m a little below par I include the intention to be kind and compassionate to myself. I then briefly run through how I hope the day will turn out, visualising my relaxed effortlessness and moments of fun and light-heartedness. (This practise has recently replaced my attention to affirmations).These positive intentions set me up in the right frame of mind to make the most out of my day

Gratitude
The last part of my meditation session involves paying attention to all the things that I am grateful for. I tend to have a routine list that I recount everyday but I try to add to it with little things that happened the previous day or that I’ve recently noticed. These few moments of gratitude set me up to notice the good things in the day and spontaneously feel grateful for them as they happen.

By now I am no longer grumpy and miserable.

Brief lymphatic massage
Before getting up to go about the day I include a brief lymphatic massage around my face, head, neck and chest. This has evolved from one I read about it Dr Perrins book and from watching a couple of different videos about lymphatic massage on Youtube.

Hearty breakfast
Finally I sit down to a hearty breakfast of black beans and egg. I have found that I need to start the day with a protein boost. If I have carbs for breakfast I’m craving more within a couple of hours and  the tension involved with these cravings undoes all the good work of starting the day relaxed, energised and with a positive mental attitude.

What do you do to set up your day well?

 

Sunday, 6 April 2014

ME/CFS and Surrendering to Taking It Easy

Since my ‘crash’ forced me to face up to the fact that I’d been trying to do too much I’ve chosen to focus on looking after myself and taking it easy. Once again, I pushed it back up to the top of the priority list. I never deliberately removed it from prime position, I just lost focus and didn’t notice that I was starting to put other things first. I’ve not just renewed my decision to put my health first; I’ve decided to commit to it fully!

Instead of waking up thinking ‘what do I need to do today?’ I think about ‘how can I make today as relaxed as possible?’ ‘What kind of rest can I have when?’ I allocate a little time to doing stuff but with an important proviso: I will only do it, if I feel like it at the time. If my body or mind is resisting the task in any way, I will not force it. Neither will I allow myself to think about what I can get finished in what time frame. My focus is on doing things in a relaxed effortless manner. My goal is to surrender to taking it easy.

My first experience with this illness taught me that relaxed effortlessness is key to giving my body the best chance to heal itself. But it’s so easy to get distracted from this goal either by desires to live life more fully or perceived external demands. One benefit of a ‘crash’ is that it provides a fresh opportunity to renew your commitment to taking it easy; to put looking after yourself back at the top of your priority list above having a life! They are both important but the reason that they need to be in that order is that only by optimising wellbeing will we have the energy we need to have a life!

What I really want to talk about though is how much making this commitment has really paid off for me this week. I haven’t had to give up on productivity. I’ve only had to give up on putting it first. By surrendering to taking it easy I’ve found time to do little bits of writing/work. I’ve actually kept on top of the house work even better that usual. By not pushing my productivity I’ve stayed relaxed and been able to do a little bit here and there more regularly. By only doing things that I feel like doing I’ve actually got just as much done as when I decide I will do this, this and this today. But I feel much more rested and happy. By making my activity fit my energy rather that expecting my energy to keep up with my chosen activity, I’ve used my energy far more efficiently. I’ve enjoyed resting more too because I haven’t pushed myself into a state where I have no choice but to rest. My mood has generally been a lot better too, I’ve felt lighter and I’ve been more aware of the little moments of joy that surround me. Even better is the fact that my energy has gradually returned and after just 10 days of being committed to taking it easy I’m already getting close to my pre-crash baseline. This time though I’m not going to celebrate my renewed energy with plans for doing more, I’m going to carry on enjoying life by surrendering to taking it easy. I know that I can trust my activity to spontaneously fit how I’m feeling as long as I don’t let go of my commitment to putting taking it easy first.

What does surrendering to taking it easy do for you?

Sunday, 30 March 2014

ME/CFS and Managing Improvement

There are many strange challenges involved in this illness and one that ranks high in the strangeness ratings is how difficult it is to manage getting better. Increases in energy are never infinite. There are still going to be limits which if surpassed will lead to a crash. When we feel better we know our limits are wider we just don’t yet know how much wider!  The best strategy for dealing with this is to make sure that you increase activity in tiny increments and make sure each increase is sustainable before adding another. The wisdom is there, we know what we’ve got to do but it’s almost impossible to actually do it.  When we are so used to the limits to our ability, suddenly finding that you have more energy that you’re used to is intoxicating. However much you want your improvements to be sustained it’s hard to resist all the urges of your spirit to celebrate this new found energy. We may even manage to take small tentative step towards increased activity at first but sooner or later the sense that we are OK takes over and we just go for it.

I see it as a natural expression of our life force. Our illness often forces us to reign in this life force because we just don’t have the energy to express it but it’s something that wants to be free. This urge to live our life to its full potential is a good thing. If we can harness it appropriately it will lead us to fulfilment. We don’t want to supress it altogether. Part of the challenge of this illness is learning how to express it within the confines of our limited ability. I find it perfectly natural that it will push those boundaries whenever those limits seem to slacken. I embrace my life force, like an exuberant child that needs careful management so I can’t resent it when its exuberance breaks free.

So once again I am in a crash from overdoing it after making some substantial improvements. I choose to see that really I’ve done quite well. It’s taken about 3 months of improved energy before I’ve overdone it sufficiently to crash for more than a day or two. As always that temptation sneaked in; my life force burst through the seams. However I’m not going to beat myself up about this. I am human!

It’s probably pretty hard for outsiders to understand but I’m sure every ME/CFS sufferer who has ever had an improvement understands how difficult it is to keep to minimal increases in activity levels. Crashing is almost a natural part of the process. The less we can do it the better, but it happens! Now I remind myself to look after myself. I remind myself that even though I’ve been getting better I still have a challenging illness to deal with. I remind myself to pace. I decide to monitor my activity and energy levels again to get a better idea of my new baseline of sustainable activity. I remind myself that even though I’m in crash at the moment I’m still functioning better than on an average day 6 months ago. It isn’t the end of the world and I will get over this.

We don’t always get illness management right. It’s extremely difficult to do. But when we get it wrong we must be kind to ourselves, accept ourselves as fallible human beings and try to learn from our mistakes. OK, so this is a lesson I’ve had to learn over and over again, but that’s the nature of this particular lesson.

Yes, we definitely need to be very careful about increasing our activity when we start to feel a bit better, but if you don’t get it right don’t give yourself a hard time. This is a very unique challenge that is extremely hard to overcome.
 

Sunday, 23 March 2014

ME/CFS and Supplements 4: Vitamin C

Vitamin C has long been associated with giving health a boost especially when you’re run down or fighting infection. It’s now understood to be a powerful antioxidant and is thought to play a role in the immune system and repairing damaged tissue. In her book ME: Chronic Fatigue Syndrome: A Practical Guide (1988), Dr. Anne MacIntyre also suggests that it can inhibit inflammation and may even act as an antiviral agent. These are all fantastic properties for someone with ME/CFS. Whilst vitamin C isn’t going to be a cure for ME/CFS it will definitely help the body to help itself. My goal with self-help is to help my body enough so that it can reconnect with its innate ability to heal itself.

The question is do we need to take vitamin C as a supplement and if so how much? Vitamin C is available in a huge range of fresh fruit and veg so the more of these we can eat raw or lightly steamed the better:

Broccoli; bell peppers; kale; cauliflower; strawberries; lemons; Brussels sprouts; papaya; chard; cabbage; spinach; kiwifruit; cantaloupe melon; oranges; grapefruit; limes; tomatoes; courgette; raspberries; asparagus; celery; pineapple; lettuce; watermelon; fennel; peppermint and parsley.
We are a bit strange in the animal kingdom as our bodies do not store vitamin C.  Because of this we need to take it in on a daily basis. In general excess vitamin C is easily excreted by the body; however, taking very high doses of vitamin C is thought to have possible dangers.
In the natural world, the animals which produce their own vitamin C will produce up to 10 times their normal amount when their bodies are under some kind of stress. I take this as evidence that my body probably needs several times the recommended daily allowance (of 80mg) because of the constant stress placed on it by ME/CFS. Although I eat a large amount of fresh vegetables I tend to take between 1 and 2gm of vitamin C dissolved in water spread out over the day, as I take may various doses of other supplements. Large doses of vitamin C (500mg or above) should always be spread out across the day. Also, at this level the body can build up a tolerance and rapid withdrawal could lead to deficiency. So if you are taking a large dose and decide to stop, it’s a good idea to cut down gradually. 2gms has been set as the upper tolerable limit for this vitamin. Above this level some people start to experience a stomach upset. 
There is a controversial school of thought that suggests mega doses of vitamin C (from 2 to 20gm) could be beneficial to many conditions including ME/CFS. Unfortunately now that the tolerable upper limit has been set at 2000mg (2 gm) science will never give us an answer, as strictly regulated research will not be accepted as ethical for doses higher than this. The following 2 links explore mega dosing of vitamin C in more detail: green girl fights fatigue and health, healing and hummingbirds.
Please remember that this post is not intended as a recommendation. We are all different and different supplements are likely to have a different value for each of us. We must each take responsibility for our own decisions about which ones might be worth investing in, making sure that they are adequately informed. If in doubt consult your doctor or alternative health practitioner, and always consult your doctor if you have any other conditions and/or are taking any kind of medication.
Again, I would recommend that when you choose to take a supplement you introduce each new one, one at a time. I would also suggest that you record your symptoms and general state of wellbeing before and after to observe if and how they make a difference. Every few months, if you are well enough to experiment with not taking it, it’s a good idea to cut it out for a few weeks and see if there are any ill effects. If there are you can resume taking it with confidence, if not you might want to economise.
What are your experiences with vitamin C?

Sunday, 16 March 2014

ME/CFS: Changing Our Ways of Being!


Dealing with this illness effectively didn’t just involve learning new skills, but involved me learning completely new ways of being. This wasn’t easy because my old ways of being have had years to develop and be reinforced. First I had to see the benefits and believe that the new ways of being would work for me, then I had to commit to practising them. They were soon reinforced by their positive results when I remembered to put them into place. These are some of the new ways of being I have found most helpful, some of which I still have to pay attention to cultivate, others now, already come more naturally.
  • Being accepting of my bodies limits in the moment
  • Being committed to noticing when my energy is getting low and to stopping before it runs out
  • Being committed to taking responsibility for optimising my health
  • Being willing to assertively communicate my needs to those who need to understand them
  • Being joyful and willing to notice the joy that is always all around me
  • Being confident in my value and willing to receive help, support and love.
  • Being trusting that this gentle, joyful, relaxed way of being will be enough to make life work for me
Knowing how you want to be isn’t always enough though. Sometimes we also need to focus on challenging the things that get in the way of being how we want to be. The following are some very natural obstacles to cultivating helpful ways of being. How many of these can you relate to?
  • Forceful determination to overcome. Being committed to better health isn’t a bad thing as long as we can replace forcefulness with relaxed effortlessness.
  • Lack of understanding of what you need by those around you. Being pushed beyond your limits or your illness not being accepted. We often don’t get the information we need that will help us manage our illness appropriately. Even when we do discover what we need there can still be others around us pushing us to be different.
  • Not wanting to let people down or be a burden.
  • Not accepting that the way you spend time with people needs to change, and that means they have to adjust to your situation too. Not feeling worthy enough to expect others to adapt to your needs.
  • Wanting others to take all responsibility for making your health better.
  • Believing that your emotions are all about what’s happening to you and not about how you choose to deal with it
  • Worries about essential things not getting done
  • Feeling you have to be productive to be worthy
  • Boredom, not knowing how to have fun without energy
  • Feeling better and wanting to make the most of the opportunity to have fun
If any of these points are still a challenge for you, don’t worry, in a way its good news. These are all areas where different choices can be made; new ways of being can be learned! Recognising them brings you an opportunity to grow and hopefully improve your health. What could you do to challenge your obstacles to a happy, healthy way of being?

Sunday, 9 March 2014

ME/CFS and Recognising Emotional Interference


If you’ve read some of my other blogs you will have gathered that my approach to dealing with unpleasant feelings is to embrace them, accept them, accept yourself for having them and have faith that they will flow and change. Generally just let them be! The important thing is not to block their flow by non-acceptance, resisting or suppressing the feelings or by holding on to them with unhelpful thought processes.
For example when you’re dealing with a feeling of loss you could block the flow with non-acceptance: ‘It’s wrong for me to feel like this’; resistance ‘I shouldn’t have to be feeling this - I want my old life back’; suppression: ‘feeling like this doesn’t get me anywhere so I’m just going to ignore it and get on with things’; holding on: ‘How is my life ever going to be good again’ ‘life was so much better before’ etc.
Basically I suggest that by being present and compassionately accepting with a feeling, it will flow and change and soon you will feel better.
However the picture isn’t always as simple as that. Sometimes a feeling can be hooked and exaggerated by what I am choosing to term as 'emotional interference'. What I mean by this, is when there are factors influencing your present feelings that have nothing to do with the here and now of the present situation. This could be a belief system that no longer serves you or perhaps the fact that the present feeling feeds into left over feelings from past experiences which were suppressed and never got to flow to their conclusion.
For example, sometimes if a friend lets me down, along with feeling understandably disappointed I may also experience emotional interference from my childhood feelings of not fitting in or belonging. As I’ve already worked with a counsellor and during my counselling training on these issues, I can easily recognise them as not belonging to the present situation. I accept myself for being disappointed and then I accept my younger self for feeling the way I did back then, and my feelings soon flow.
The first stage in dealing with emotional interference is to recognise it for what it is. Usually you can get a sense that the strength or quality of your present feeling doesn’t quite fit the present situation. Emotional interference may also be indicated if certain feelings regularly repeat themselves and you seem to get stuck with them often. If you have learnt how to be present and accepting in the here and now with most of your feelings, but something just won’t move then it’s probably time to look deeper.
As emotional interference is often stubborn and difficult to deal with it can be good to enlist some help with it. There are a large range of self-help techniques for challenging such issues but sharing with another person gives you an added boost of acceptance and understanding in the areas you are struggling with.
In the present moment though you can recognise that the feelings you are experiencing have an aspect of emotional interference; you can accept that emotional interference is a part of being human; you can compassionately accept yourself for the feelings that are appropriate to the here and now and for the extra elements; and you can put the extra elements to one side and resolve to deal with them at a more appropriate time. Follow through on your promise to yourself though, because if you keep putting it off, next time you need to put your exaggerated feelings to one side you might not be able to let yourself. You need to be able to trust that you’ll deal with them later!
Dealing with ME/CFS brings us plenty of emotional challenges as it is, if we can recognise and deal with emotional interference it will be a lot easier to overcome those challenges!