ME (or Chronic Fatigue Syndrome) is totally confusing to me and I suffer from it, so I can conceive just how crazy it can seems to others. And I’m not even talking about the ‘judgement factor’ – for this purpose lets just assume I am speaking with those (unbiased) folks who know that ME is ‘real’ but are just baffled by the complexity and understanding of it.
Quite honestly, I barely know what to call my ‘illness’ most days as it just has so many layers. If asked, I often rotate diagnosis titles but nothing ever feels quite right.
*“I suffer with Autoimmune disease.” OR “I have Thyroid & Adrenals problems.”
Both statements are true but neither quite en-capture the whole picture or do this disease justice. But at least they are more specific than CFS or ME. A label is not that important in terms of recovery because I believe that many illness’s have at their core the same issues if you go far enough back. But a diagnosis (or a name) just make life and social situations easier and it also gives you a starting point or a frame of reference to work from.
I personally dislike (and rarely use) the term ME or CFS in relation to myself simply because it has become an ‘umbrella term’ and as such starts to mean very little when basically so many random sick people (who may share some symptoms) are lumped together under one broad term. Having said that I see no point in getting caught up in the ‘label’ debate either. That doesn’t interest me.
You can read more about my story here but basically I acknowledge that there is no ONE thing wrong with me. Especially now after so many years. I think most disease stems from a combination of poor lifestyle, environment, toxins, diet, genes and/or a trigger point. The way it then manifests and develops varies from person to person. And not everyone will get sick from the same triggers either. Let’s call that ‘the luck of the draw.’
And for this reason there could never be ONE simple cure (for me.) Even to find the root cause (were that possible) would still need to take account of the resulting additional and accumulative damage inflicted ever since. However, discovering such a cause or an initial viral trigger (likened to searching for a needle in a haystack) could still be hugely beneficial and welcomed.
There is an intricate web of debilitating complexities going on which need deciphering intelligently and fully.
I have been trying to put all the jigsaw pieces together for 18 years. My head is often in a spin 😉
The more I research and the more I learn the more tangled it becomes. It is hard to piece all the information together and know how to proceed. One wrong move can tip the entire delicate balance, as I have discovered on many occasions to much devastation. But going slow is excruciating when so many years have already been wasted.
So how do all the various theories of Thyroid, Autoimmune, Adrenals, Leaky gut, Inflammation, virus’s, Infections, Toxins, Mitochondria, Methylation cycles, Food allergies, Cellular deficiencies and so much more fit together exactly?
And how then do you put them together to fit each individual?
When you face this concept you can begin to comprehend why such little progress has been made with this disease. It is such that it likely requires a highly individual and tailored approach from a field of experts and researchers working together with YOU to break it all down.
Or maybe a team of of NASA scientists! hehe
As a sufferer trying to work all this out (with brain fog) it can be frustrating and challenging to say the least. Yet it is very important to be the main player involved in your health plan. No-one knows better than you do so don’t surrender your power or confidence over to any doctor or expert. Take their advise (if it rings true) and find your own healing blend, because otherwise you will get caught up in many contradictory theories and be pulled and pushed in a million directions. You will be spinning.
Unfortunately, one wrong move in this nerve-wracking game of chess and you can be back where you started. For instance; one treatment approach may be helping one issue, but another variant is still so out of synch you don’t even notice the potential improvement, thus deem it a failure. Or perhaps taking ‘X’ may make you worse because you haven’t yet discovered you have a genetic mutation which will stop you absorbing it in this particular form. Were you to have this information to hand then a different form of ‘X’ may have shown benefits?
Confusing you much?
And so the cycles continues……
Round and round. Year after year until you don’t know where you are and you question whether you have really got anywhere at all. At least in terms of how much you are physically (and consistently) able to do on a daily basis anyway. Because we definitely ‘grow’ and develop on this journey a lot. We find strength and we are strong. We become pretty ‘evolved’ I would go so far as to say. If only we just had ‘good health’ we would be sweetly flying oh so high 🙂
Don’t you love a bit of irony?
And timing can be crucial too. The 3rd or 4th time of looking down a particular avenue – say adrenals – may now work simply because this time ‘problem A’ has now been fixed which now makes all the difference…. Or, perhaps because you have made so many improved dietary changes the body has managed to build stronger roots and this time things work out.
Its a total crazy minefield! And you are mostly left to figure it out alone.
Recovery is a full time job.
ME is like being swallowed up by by a huge avalanche. There you were taking a lovely trip and skiing down the glorious mountain. Admiring the view. When WHAM!…… buried under snow.
You start to become overloaded with more and more piles of snow (issues) the longer you are consumed. Careful and precise digging needs to take place and slowly. Various experts (with differing credentials) called in. These ‘experts’ are rare creatures though so be warned that you may not even be able to find one.
Digging layer by layer.
Maybe as you begin to dig more of the white stuff falls and a whole other complexity emerges? Argh.
Are you getting the picture now?
I personally concentrate massively on diet and lifestyle. Its the basis for any good solid wellbeing foundation and it needs to be in place. It makes a difference. It gives you some control. Starting over (again ) from this point just puts me in a better position for my body to heal when it can. And I have to say that for many people – particularly those CFS sufferers who perhaps have not been ill for longer than a few years and are not too badly affected, this is potentially enough to allow your body to do its innate and capable job of healing itself. It certainly is the first place to start and see what happens anyway. It would be great if there was a set basic protocol in place for people to follow as a basic starting point.
For sure, the combined length of time and severity factor, often make this an entirely different disease now requiring a differing, multi-faceted and highly intricate treatment approach. Rarely will working with one expert/plan cure all. And yes there is absolutely an essential element of taking as much control of this as you can for yourself – but that is true of any illness or life issue. Yes, we do have the ability to heal and recover and I fully believe in that, but sometimes we need additional help too.
When your condition is long-term and chronic and you have been dealing with this for 10 or 20 years too much snow has potentially fallen for your body to recover without outside assistance of some kind. Be that alternative, mainstream or combined. Be it an autoimmune diet, supplements or more serious medication. I appreciate an holistic approach. For instance, much as I would have liked to have claimed credit for healing my adrenals naturally (and I tried hard for years) it got to the point where medication was needed to raise my low cortisol levels. Similarly my thyroid does not produce enough hormone and without some Natural Dessicated Thyroid I cannot get out of bed no matter how much meditation I do or Chicken broth I consume.
Although there is of course a distinction between medication that masks symptoms and medication which replaces vital missing hormones. The latter allows your body to receive that which is a fundamental requirement to thrive.
The main desire is to be and feel well, however that is achieved. This is where I stand right now. It feels good to be clear. To find my own clarity. To accept that I do have principles and ideals but that they are not always the most important thing. I am open to all approaches and will keep my ego in check.
The point of this piece is to share my confusion and lift it from my own shoulders really. To know my own stance on this jumbled topic. Does that make sense? I think that those who suffer will get what I mean.
At least I hope that they will?
I just want to let you know that I am also working through all this too and I will update and share things as I go along.
The next area I am personally testing is Genetic Genome testing (and Methylation) to see which mutations may be causing issues. Will fixing this be the last clue? Who knows?
I expect there may be many more pieces of the jigsaw puzzle to find. Quite likely I need to discover my root cause which triggered this devastating cascade.
* Update Sept 2014 – The Discovery of active Parvo B19 Virus in my system and in much more detail here.
Leave me a comment and let me know what has helped you. Or if you ‘get it’. It is a complex topic and this is only my personal stance on my own situation. I am mindful of respecting everyone’s opinion and there is no judgement here.