This week is M.E awareness week, and this wouldn't be Cosmos and Cotton without acknowledging that. Many of my regular readers will know that I have been struggling with this debilitating illness for nearly five years now, wow, five years, I still can't quite believe that I have lost so much time in my life due to an illness, pretty scary. I am going to add right here that this year my post about ME is not going to be all doom and gloom as this girl here is on the road to recovery, yes, you heard me say it and you read right. There is NO stopping me now, I am determined to kick this M.E's butt and boy that is exactly what I am doing, and I hear so many of you say, but HOW?!!
Well, the honest truth, first and foremost through acceptance, you see I haven't really lost so much of my life over the last five years, if anything I most probably gained something that I never would had, had I not fallen ill, and that is compassion and love for myself and my body. You know this illness is tough, there is NO denying it, it throws you through hell and back several times in a day and spits you out when its done with such little regard. It is filled with many sad moments, loneliness, pain, brain fog, or in my case (and many others), just the inability to use your brain full stop, in fact it's more like NO BRAIN. There is constant pain, sleepless nights, nausea, vomiting, diarrhoea, dizziness, stomach pain, inability to eat or digest food, let alone absorb any nutrients from it. There are pins and needles, burning all over your body like someone is scalding you with hot water, ear ache, sore throat, muscle pain like you've run a marathon, oh you name it the whole tutti, or as you lot would say the full Monty.
It is tough, yes BLOODY impossibly at the best of times and why, well you know the funny thing is NO ONE KNOWS!!! Neither does anyone really care as there is no magic drug, which means no additional profit margins for governments or pharmaceuticals, sad, but hey oh so true. It is this invisible illness that hides within each and every one of the apparent 250, 000 people who suffer from this condition in the UK alone, yes in the UK alone, let alone the rest of the world, yet there is no support and no insight into this.
This is most probably the single most complex illness that exists, and the reason why is because even though each and everyone of us exhibit the majority if not all the symptoms and more, we all have a completely different experience of them as they manifest and affect each and every one of us differently. Well to be honest this is not surprising seeing that each and every one of us have a completely different DNA profile, so not at all that strange right. The issue is there is NO CURE, NO MAGIC DRUG, NO FIX.
Now there are many so called treatments claiming they can cure ME, Chronic fatigue and Fibromyalgia and for many people these treatments really work. The question is why do they NOT work for EVERYONE. Well I have an opinion about this, but I will save it for just another minute or so, bare with me. Treatments are geared up to focus on your emotions with specific emphasis on events in your past (I am not ruling out that past events can have a significant impact on our well being), some would argue that it is a build up of toxins in our bodies that affect our lymphatic system and eventually cause havoc with our parasympathetic nervous system (I am pretty much supporting this camp!), others argue that it is all about our thought processes and what we do with these thoughts (CBT), some say that symptoms are emotions-in-motion (you get that e-motion and I am also supporting this camp!), others argue graded exercise is the ticket (hell YEAH, certainly not in my case, it threw me for six!). Then there are a host of alternative medicines, Ayurvedic treatments, homoeopathic treatments, herbs, Chinese medicine, acupuncture, Reiki, you name it. I could be here all day typing this up. Now some of these can really help and alleviate the pain, discomfort, reassure, sooth the mind or body, but they don't really focus on the root cause of it (maybe the emotions in motion does). So even though I am sitting firmly with both feet in the 'build-up of toxins overloading the lymphatic system camp', how did they get overloaded in the first place??? Well for me the answer is simple, by ignoring all the signs that my body was giving me when it was shouting, stop doing this activity I really don't like it (headache), stop doing this for too long (back ache), stop eating that (dicky tummy or gas), etc. The same pretty much goes for the treatments that work for some and not for others, the answer in my opinion why it doesn't work for everyone is simply the same reason why some people function optimally eating vegan foods and others being the complete opposite and living life to the fullest on a paleo diet. We are all different and ONLY YOU can really understand what your body needs, no one else can do it for you. They can guide you and support you, but only YOU can unlock the keys to optimum health. All these programmes do (mostly) is give you the tools, you still need to do the work. As for the lymphatic drainage, well that's a physical treatment, so it is helping with unblocking the lymphatic system and believe you me IT REALLY WORKS to alleviate symptoms, I am still doing it four years down the line, so that says a great deal about the Perrin Technique but it is not the only treatment that is going to get your better. You need to find the root causes (and yes there will be more than one, trust me, we are complex creatures!).
I am someone who is very 'hungry' for information and also for life itself (we only get one chance right!), so when something like Fibromyalgia (as in my case) happens, you don't take it lying down, pardon the expression as ironically I was lying down for many years. What I did do though was to read a few minutes when I could, listened to audio books even just a few minutes at a time (its a weird thing how you brain just can't take things, it feels like the pressure build up from information is just so intense that your head is going to explode). I read a lot of crap and a great many wonderful and inspiring books over the years, some of which I will list at the bottom of this very long blog post (sorry!). One thing that kept coming through time and time again was that I had power and control, I just needed to learn the tools of how to use it. Now hang on, I can hear those with this illness screaming what I screamed out for so many years: 'but I have complete adrenal exhaustion', 'I have parasites', 'I have really high levels of ESR (inflammation in the body)', 'I have heart failure', I have low white blood cell count, etc. how can this possibly be something I can fix, it is all physiological right! The bottom line is I can't fix it for you, but you have the power within you to make changes to your life so you really focus on what your body and mind needs. This is such a complicated subject and most probably one that I can talk about for hours, but in a nutshell, this illness is a blessing in some way, it is an opportunity to REALLY STOP, YES STOP and LISTEN!!!! Don't think about the pain, the hardship, the sickness, the inability to sleep, no, think about how you can listen to these messages. These symptoms are NOTHING more than your bodies way of talking to you, it is giving you messages that you need to start listening to, that is why they are shouting out at you because you are NOT listening (present company included!!) and the thicker your skin (as in my case) the longer it is going to take. So when you are spending hours in bed cursing these aches and pains and sickness start loving your body and giving it the care and support that it is needing at this time, just like you would with your child. It needs lots of very special TLC, don't just ignore these requests. It also might very well be telling you that it wants something different than what you are doing right now, so try it and see if it works, if the symptoms dissipate or lesson.
Now if you were anything like me, prior to illness I honestly must have thought I was superwoman, a full time degree whilst working a full time job and two pregnancies, writing a dissertation whilst breastfeeding two or three times a night, gawd what was I thinking??? And when the going got tough I jumped on my mountain bike to blast a few hills just to relieve a little tension, or add some shall we say. One thing is for sure I NEVER listened. I heard all right, the signs were all there, but I chose not to listen, why because how the bloody hell was I suppose to know they meant something. In society we are conditioned to suppress these feelings of discomfort or pain, we are brought up to having to conform and just to go with it even when we don't like it, 'just eat those things on your plate', 'awh you will be OK, just carry on', 'don't be upset', 'don't be ridiculous that's not scary', 'you're OK that doesn't hurt' and on goes the list, you get where I am coming from. Well for me (and don't get me wrong I am not telling you what to do here, I am purely trying to put my perspective out there) it has taken me years to realise that these symptoms, pains around my body, diarrhoea, you name it was a sign that my body wasn't happy with it and now finally I am really homing in to address these issues. I am going to take the opportunity to add here that it is far from easy, it is going to take years of practice, but I will get there!!!
It's NOT easy, simply because we just aren't brought up to be mindful, we are not conditioned to look into ourselves, that would be seen as being selfish and self centred right, well in my opinion it is far from that. As a Mum of two, I know just how hard it is to look after two small and dependable children when you are not feeling well enough to even lift your arm, so yes I know just how important it is for me to be well so I can give my children and family the best possible care and attention. It is a bit like the life jackets on an aircraft and having to ensure that you have yours on before helping others. Now that I have a different perspective in life, I often giggle when I see people spending hours cleaning every little spot on their cars, polishing the wheel caps, their pride and joy, yet do we do this to our bodies, hell no! We would never spend hours each week or every other week just giving our bodies a little TLC and maintenance, we don't have time for things like that, but why???? These are our gorgeous and amazing bodies (vehicles) and without the correct fuel and love they don't function properly. You wouldn't put diesel in a petrol car would you, yet, we so often put so much crap in our bodies and wonder just why it is we feel so shitty. Hey, I am not preaching here as I am the first person to hold up my hands and say guilty as charged, no more though, I know now just how important nutrition, meditation, time to yourself is and I am never letting go of these golden keys, well never say never (a lesson I learnt becoming a Mum, it sure as hell has bitten me in the bum several times).
So yes, this is not a conventional post about ME today, but I just wanted to give people a little bit of hope. DON'T give up, never stop believing and never say never. No one can really tell you what your body needs, only you can decipher that and isn't it strange and equally amazing that we all are so very different and that a vegan diet can bring optimum health for one person whilst a paleo diet works for another, lets not judge! Experiment and try them all, the world is your oyster, and have a little fun with it, life is to short to be serious all the time.
Sorry for this super long post and for those of you who actually managed to get to here, WELL DONE and THANK YOU!! Don't get me wrong I am by no means cured, I still have a long way to go, but it is all baby steps and the confidence that these steps will get me there one day. I realise this is a super long post, but I wanted you to know that despite the fact that I still have heart problems, adrenal exhaustion (yes borderline Addison's disease), high levels of ESR (inflammation in the body), very low white blood cell count I am on route to hopefully turn some of these around. I have gone from not being able to walk at all to now being able to walk small distances, I am no longer lying down in the day (yay!!) and I am grabbing back a little of life where I feel I can. I will also stress here that the last couple of years (not so much the early ones) I was happy with life, I accepted my life and I was content with being mostly confined to my house, being at ease with your situation no matter what it is has got to be a good thing as it brings calm to our minds which in turn affect our sympathetic and parasympathetic nervous system. Constant negative emotions and thoughts breed illness and there is no doubt in my mind that a positive mind will bring a positive body over time. I am NOT saying that thinking yourself well is going to get you there, NO not at all. What I am saying is being positive, tune in, take time, listen, figure out what your body needs, how it operates and how to get it to function optimally, only you hold the key to solving this mystery.
So here are some of my all time fave books (in the order of preference)
Quantum Healing. Exploring the frontiers of the Mind/Body Medicine - Deepak Chopra
When things fall apart - Pema Chodron
Fat Chance, The hidden truth about sugar, obesity and disease - Dr Robert Lustig
Self Compassion. Stop beating yourself up and leave insecurity behind - Kristin Neff
The power of Now - Eckhart Tolle
CFS - Call for Soulwork - Gretchen Brooks Nassar
Unconditional Parenting - Alfie Kohn
Mindfulness in plain English - Nhante Henepola Gunaratana
BEEN THERE, DONE THAT? DO THIS! - Sam Obitz
You will note that I have added a parenting book, but it is a book I read alongside the Science of Parenting (which is another fascinating book) by Margot Sunderland, which really emphasises why as a society we are developing in the way that we are, not being able to express our emotions or at least when we express it that it is accepted and understood. It also explains why we develop this feeling of never feeling good enough and always striving to please. We can learn a great deal from ourselves and our problems by looking at the way that society raises children. Alfie Kohn's book really brings many issues to the forefront that mothers and father will be able to relate to so if you have ME and have children, you might find this read insightful.
So that's it for today's post and thank you for sticking with me. I would love to hear your comments and thoughts, so please don't be shy to share your views. I was actually hoping that by now my new blog, which would be more geared up for these kinda posts, would be up and running by now, but you know its not and hey I don't do pressure anymore, it will happen when it will happen, se la vie! For those of you new to my little space, a very big welcome, I suspect this post might blow your socks off, I promise a little crochet related chatting next time.
Wishing you all a very pleasant weekend, I am actually going to my first concert in years tonight as I just couldn't miss the opportunity to see the legendary Prince, and 'tonight I am going to party like its 1999' (haha).