A Poem about growth, and real life for all those who have had an experience with debilitating health, (CFS / ME, POTS, and Fibromyalgia). I wrote this to help inspire people who need it, and lighten up the subject, but be honest about how challenging it can be. Life is all around us, even when we may be being pushed beyond our limits. It’s at these trying times, that life becomes even more special. When everything slows down, and you are so in the moment, even in the midst of something terrible, there is peace, and connection.
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I guess it wasn’t until I truly made a type of recovery plan, that things started to come together. I also didn’t do this until three months after diagnosis, on the back of a major relapse. Until you’re diagnosed it’s hard to set any helpful ideas in place, because you’re just in a shitty place wondering what the hell is happening to your body. Sadly I was in this position for a year and a half, which was too long, and which made my health worse because of a spiral of panic.
So the plan comes about, I guess at a different time for everybody. Even though in May 2014, I started to receive more specific help from my local ME/CFS service, it was limited and I needed to create something which I felt would address all areas where there was stress or weakness, not just physically but also psychologically. I knew there were cycles within cycles occurring and I needed to get free of them.
After hitting almost bottom again after a few months of progression, I realised I needed a foundation to see me through and help me gain some greater control. Funnily enough the plan I mapped for healing my body, looks to me now, like areas which contribute to a balanced life. I didn’t know then I was to be re-modelling my world, which continues!
One of the best ways to understand something is through a visual representation, so I made this video which outlines the main areas I added to my plan, and which can hopefully be useful for yours.
I live an hour train ride from London. I used to live there whilst at University during my first degree. I worked there for years, before I was self-employed and I studied there for my Masters degree. I have spent a lot of time there, it’s clear but I haven’t been there for three years since getting ill, until today Aug 24th 2015! She does a little dance…
I planned a short, easily achievable trip for my first time. I chose a good goal, to have lunch with my lovely sister, and at a place nearby the end of my line, Fenchurch Street. St. St Katherine’s docks was the venue, I knew it was a suitable walking distance and now I just waited for a good enough day to go.
It was raining, but hey, less people out to lunch so that’s a bonus! I was a bit fluey, it comes and goes, but I knew it would boost me to go, plus I could rest both ways on the train, little did I know what the universe plants in your way for some kind of weird scnychronistic test. I’ll get to it later!
I felt so elated inside to be riding the train all the way to London. I have been able to do a few train rides now, over the last six months, to nearer stops around where I live. It’s been great feeling my independence again. It’s been a bummer I don’t drive because when I went down into the dark tunnel of ME/CFS, I’ve been dependent on others to get places further afield.
If it still remains hard for the general medical profession to agree on what ME/CFS is, then how are we supposed to comprehend it when we have it ourselves. Furthermore, if we are the one experiencing the horrid, life altering experience, then how are those around us to understand our experience, or find ways to help.
This is why, in my opinion, it makes having this illness / condition / experience, or however you wish to frame it, a real tough situation to tackle, because there is just so much ambiguity, and even, in some cases, denial and judgement about the seriousness and reality of the actual bodily experience. This can and often does, lead to worsening cases of it when diagnosis is not swift, as in my case, and when information and support is not available at the outset. This lack of firm recognition can lead to further denial of the bodily experience, a tendency to, “battle on” and therefore, a deepening of the severity of ME/CFS and Fibromyalgia.
Action for M.E., a leading charity suggests: “Myalgic Encephalomyelitis (M.E.) is a long-term (chronic) fluctuating illness that causes symptoms affecting many body systems, more commonly the nervous and immune systems.
Defined by the World Health Organisation as neurological, M.E. affects an estimated 250,000 people in the UK, and around 17 million people worldwide.
Many people with M.E. experience persistent fatigue associated with what’s called post-exertional malaise (the body’s inability to recover after expending even small amounts of energy; sometimes also called ‘payback’) and chronic pain. However, M.E. is characterised by a range of additional symptoms.”
Last year I created this vision board, when I was really struggling on my recovery. I remember finishing it off in December on a day where it hurt just to hold the scissors and turn the pages of the magazine. Now, eight months on, I’ve achieved the majority of goals within this vision. My bum still isn’t quite like the beautiful peach depicted on the board but I continue to work on it. However, I did have some more pressing things to focus on over the year.
I imagine the aspects we want most desire from our hearts, are the things which come to fruition quickest or easiest. The ball really got rolling last Sept/Oct, after a major relapse in August last year. There have still been hard days and weeks. My health is still mending and there remain ups and downs, albeit less extreme, but there has been much change. Here’s a run through in relation to my vision board: Continue reading
I haven’t needed to use my wheelchair since November, (well apart from one trip to Homebase in December to choose a Christmas tree), but that doesn’t count because it wasn’t from the ME/CFS symptoms, it was more a case of a physical boom and bust. I had got a little over excited after a relapse and really wanted to get to a supermarket nearby, which meant I extended a graded walk up to 75% one day. Therefore I busted my knees up for a week. The cartiledge and tendons obviously still need more conditioning, you live and learn. Re-conditioning of the muscles and internal structures, when you’ve been seriously out of action for a year and a half just takes a little time but I’m getting there now.
It’s such a great feeling to progress to walking to and from places again, of course these are very short distances at the moment, of around 200 metres or 500 metres and longer paced walks with breaks. I just couldn’t stand being pushed around any longer and due to working my way back up with physio, I was ready to release it to the shed! My husband always said that I had to push him around in it for fun when I was well, so he may get a turn soon.
My journey with the wheelchair has taught me so much. I didn’t want it at all in the beginning, but of course if I got to the car, which was down steps from our apartment and up more steps to street level, then I was still unable to walk around a shop or out in nature. There were times my husband had to carry me in a fireman’s lift to the car as I couldn’t even get up the steps. I’m lucky he is a strong plumber man, used to carrying heavy boilers up flights of stairs.
We can all feel dis-empowered at times, especially when things aren’t going our way, we are battling things beyond our control, or we feel low. When in this place, there are some things that we can do to feel more confident and capable again, despite our situation. In this video I will show you my formula, (at the end), for making changes. Some things we need to accept, and this allows us to manage our feelings about our situations, but other things need shifting. When change is required, taking action is the prime route toward making yourself, and your world, a happier, and more harmonious place to be. Taking appropriate action doesn’t have to be pushy, or forceful, it can be loving and sensible. It will lead to a better feeling of overall personal power, which comes from listening in and being responsive, rather than living up to an image you hold of yourself. Even when facing difficult situations, you can move through them.
Watch this video for the lowdown on the difference between empowerment and feelings of dis-empowerment, and learn about the process I use for making positive changes. Everything begins inside, so use the force within to guide you, and master your own thoughts so you stay focused and away from unhelpful thinking. You can do it! For more inspiration, or for info about services visit: http://www.lifepathinspiration.com
No-one escapes tough days in life, it’s part of the experience. There are hundreds if not thousands of reasons for these challenging days, but there is a common set of events that unite them. We are all built the same way, but it’s not so much the painful or disappointing situations that crop up in our daily lives that give us so much grief, more so, it’s the way we deal with them.
This common event is the body/mind reaction. It’s the way your mind, emotions and body reacts to the difficulty which arises. We can’t end suffering but we can find a way to be with the difficulty without adding to it.
Dwelling, giving in, denial, feeling sorry for the self, guilt, criticism and victim-hood are all approaches which prolong the pain. Whereas acceptance and appropriate action can bring about more peace whilst you deal with sadness, pain and other feelings, which we tend not to like spending much time with.
As a society, we have an aversion to “negative” feelings, but in fact, we can chose to stop seeing these emotions as a threat, and instead, acknowledge them more of a part of life. Trying to avoid unhappiness will only make it more painful when you experience it. It also sets up an in-authenticity and a shallow need for the constant good. Which we all would prefer, I’m sure, but if you realise that life is ultimately about growing, then you can’t grow if you only experience one side of life. What goes up, must come down, at somepoint!
Taking action provides us with a sense of personal power. When we don’t like something, are unhappy, or want more positive qualities in our life, we must make a conscious choice for it to come about. Rather than giving in, or resigning ourselves to more of the same, we can get stuck in and make an effort to be proactive.
Do keep in mind however, that especially when it comes to situations of recovering health, that in some cases, the action may be less about doing and more about making a decision to accept a current situation and make the best of things, until more activity and ability to move forward can be taken. Acceptance in general can be deceiving, we may at first think that it is giving into weakness, or even apathy, yet it’s often the first stage to true transformation; and this stage cannot be rushed. Things don’t end at acceptance, it’s just an essential step for any type of new birth in life.
Once you have accepted your current reality as it is, including all “perceived” and real limitations, then you are ready to see what is truly possible. Often we don’t know what we are completely capable of, until we try. This is especially true when treading new horizons in our world. Be prepared for all manner of events, as you step into a slight unknown.
A goal comes about once the desire for change is big enough for you to devise a plan or create an aim to make a new or different step. This visionary stage is the first step. Often, if the feeling for something more positive in your life is strong enough, then you will have the fuel to get you through each stages of achieving your goal.
There are certain highly regarded qualities which are normally at the heart of our desire, which lie behind our goal. We don’t always recognise these at first, but it can help to look deeply into our bubbling passion, because once we understand these universal qualities, we can attract greater assistance from the universal flow of our life. In a nutshell, it brings us into a place of deeper manifestation.
This curry is so easy and really warming and filling! You want to cook this in a super big pan if it’s not going in a slow cooker. This creates about 4/5 portions. You can add a couple of diced chicken breasts, if eating meat.
- 5 large potatoes
- 2 large carrots
- 2 onions
- 2 cans chickpeas
- 200grams red lentils
- 500ml veg stock,(normally 2/3 Kalo cubes)
- 3 tblsp mild or medium curry powder, (I like a mixture of both)
- Additional sprinklings of paprika, garlic salt, cumin, turmeric, cayenne pepper, (make it as hot as you like).
- Salt and pepper
A taste of fruity, natural heaven, this simple muesli is so fresh and filling. A great way to start the day.
- 3 tbls Bio yogurt
- Small banana
- 4 tbls porridge oats
- Couple handfuls chopped walnuts
- 5 dates
- Handful raspberries
Just dice all the fruit and mix up the remaining ingredients with the yogurt. Then enjoy!
Building a firm meditation practice can really transform your unhelpful habits, behavioural patterns and relationships. It can literally make your body, mind and life, in general, a much better place to exsist.
The type of meditation that can really help to transform your life is one where you spend time aside from your mind. It’s a reflective exercise where attention is payed to the breath so that you observe your mental patterns, rather than simply being them.
This practise is often called mindfulness meditation. It’s different to other relaxation methods, such as guided creative visualisation or hypnosis, where there is an aim or an experience of intending to lift up and out of yourself. This is incredibly useful for the purpose of relaxing, or in the case of hypnosis, for working on changing, an already identified negative habit.
However, these techniques may not offer, true transformational change within us, without the addition of a meditation practice. This is often because it can lead to escapist tendencies or avoidance of truly being with, and seeing the mental constructs which are keeping us stuck in the same cycles of behaviour. Of course, becoming more present and awake to the moment doesn’t have to arrive solely out of meditation. Many people can come to this in other ways, through shock, life trauma or just an evolving entry into an alert being state. However meditation for many, remains a useful tool to become steadily more free from the mental suffering.
Playing with my new slow cooker, I made a favourite all orange ingredient, soup of mine and it was fun to just let it simmer away all morning. In fact in only took around three and a half hours until it was ripe for the hand blender. This recipe has evolved each time I’ve made it, and today I think it’s reached the peak of flavour. It’s a thick, harty soup for cold days and hungry tummy’s.
- 2 large sweet potatoes
- 5 large carrots
- 1 large onion
- 2 cans, drained butter beans
- 175grams of red lentils (around 6 handfuls)
- 3/4 can coconut milk
- 2 veggie stock cubes in 700ml water
- 5 tblsps curry powder (mild or medium depending on how spicy you like it)
- Salt, pepper, splash cayenne pepper
- Peel and chop veg and add to either your slow cooker or very large soup pan, (if using soup pan you may need to top up the stock water a little more).
- Literally chuck in all the ingredients and allow to simmer until ripe to blast with the hand blender
- You can play with adding more spice or coconut milk to make hotter, or cool it down again with the milk.
- Serve with a swirl of coconut milk, dash of spice ontop and eat with bread. Alternatively, because it has a chunky Indian taste, a nan bread or chapati may be nice for dipping.
Enjoy the veggie, curry, coconut orange soup and share with your buddies if you dig it 😉
Key Cause – Long term over-arousal of nervous system: An abnormality in the functioning of the Hypothalamus / Adrenal Axis, (causing a maladaptive stress response) and leading to problems with the metabolic system, primarily in the production of ATP
Differential terms – Chronic fatigue or adrenal burnout is not the same as ME/CFS and Fibromyalgia which are more serious health conditions. This does not however mean that one can not recover, although the level of recovery is likely due to be different for everyone and perhaps largely based on how many contributing factors have been present and for how long, equally the time in getting diagnosed will effect things. Moreover the level of commitment to seek healing for the body and to do work on transforming ones individual psychology, in addition to biological factors will greatly accelerate things. A healthy spiritual attitude and the development of mindfulness meditation and present moment is key to this.
Further explanation: The ME/CFS and Fibromyalgia experience is when things have tipped beyond the state of stress overload. Likely a collection of prolonged stressors or a single trauma has lead to a crash state of ill health, which often culminates in malfunction in a number of different systems in the body. Once in this position further over-stimulation will lead to pain and an immune or nervous system reaction. Over-stimulation can be anything from moving, talking, thinking more than is possible, or exerting any energy beyond what is capable at your particular stage or level of severity.
Symptoms – This can result in some or many of these factors: depleted / weakened immunity (with auto-immune related symptoms, such as swollen lymph glands, low grade fever and raised inflammation, gut and digestive problems including Candida, IBS and subsequent nutritional deficiencies). Additionally further problems with autonomic nervous system over-activity which can cause, sleep disturbance, nerve pain, adrenal burnout, eye problems, hormonal imbalances, neurotransmitter dysfunctions / anxiety and depression, cardiological abnormalities including arrhythmia and POTs, migraine, muscle and joint pain, and metabolic dysfunction
A great and quick way to use up your veg and also get some lunchtime protein is to have a fritter, mmm! You can also make it vegan by using a chia seed alternative to eggs, see below. There are only three staple ingredients and it takes minutes to make.
- 2 medium courgettes or one large
- 2 eggs or 3 tblsps chia seeds with 9 tblsps water
- Half mug wheat / gluten free flour or buckwheat / brown rice flour
- You’ll need a jelly cloth or kitchen cloth to squeeze excess water from the courgette