Why MDS?

[johneatwell]

For many years I have been endeavouring to find meaning in my life; and this extends to gaining an understanding of the ailments, both physical and psychological, which have afflicted me. The first point to make is that I believe that the physical and psychological are inextricably related: this is the basis of holistic medicine, which treats the whole body, mind and spirit as the unified entity which it truly is.

Once diagnosed with MDS, the primary remedy is the latest offering of medical science, based on a developing understanding of the condition. This is undoubtably of great value, as it seeks to relieve suffering and to prolong life and the quality thereof.

I regard my diagnosis in May 2011 as a wake up call, and a challenge for me to gain an understanding of the thought processes which have caused my condition to develop.

Earlier this morning I listened in to a radio discussion between Richard Dawkins, the celebrated scientist and atheist, and Jonathan Sacks, the Chief Rabbi. As you can imagine, their respective world views are poles apart. Dawkins, whilst undoubtably warm and compassionate, takes a rational view of everything. Dr Sacks, whilst accepting the usefulness and importance of left-brain thinking, holds that a dimension is missing here, namely the sacred and the spiritual.

I won’t attempt to précis their discussion further (it’s available for a while on BBC iPlayer), but it set me going in right-brain mode, and led to the following insight.

Why MDS? It is characterised by mis-shapen precursor cells in the bone marrow. Maybe I am holding onto a core belief that I am mis-shapen in some way: a misfit, not really fitting in to the world or society.

I am watching myself writing this and posting it to the forum, aware that in so doing I am demonstrating exactly this point: everyone else is posting with details of their current condition, treatments, and the perceived performance of the medical profession, whilst I am exploring another way through. Perhaps this will provoke irritation, even hostility, amongst other sufferers. I hope, at any rate, that it may act as a catalyst for discussion.

John

[janetstanford]

Well John thats the question we all ask y !!! bit like the chicken and the egg and square peg in round hole do you not think ...

Janet

[Jayne]

Hi John

I certainly hope you do not receive any hostile replies.

Your train of thought is similar to my own (I think). I believe I have caused my body to malfunction by my actions and my levels of happiness over the last 10 years. The saddest part of all is that where I am is where I want to be, I just haven't realised it.

So what now? I have been having spiritual healing and guidance and it does help me to understand my reason for being here and it does create inner calm and peace (I also meditate...but not as often as I should). I have had amazing results with my trigeminal neuralgia but my blood problems are not being seen, as if I dont have any problems. Wouldn't that be amazing? However, I know I do and I am continuing down the medical route. But sometimes I feel like I have 2 roads, my spiritual one and my medical one. It would be great if the 2 came together.

Anyway, it is food for thought...and there is another subject. If diet can influence our MDS? My consultant said pretty strongly on Wednesday that there is no evidence to suggest I should change my diet.

We all have to do what we believe is right for us.

Jayne

[chris]

Hi All

I just wrote a huge reply to this and lost it all when I tried to preview it so really hacked off!

Briefly then:
- don't feel I am mis-shapen or a misfit though will own up to being eccentric and not run-of-the-mill!!I feel very content with my life , am not materialistic and had no reason to succumb to this disease. In fact, we probably all had MDS for a while before diagnosis so it's hard to pick out significant events which might have triggered it.
- I think we have all asked the Why Me and Why Now questions. We need more independent research into causes and treatments but sadly less likelihood of that in current economic climate and nobody will make any money out of dietary solutions - if there were any - it's the drugs companies that will make the Big Kahunas from novel drug treatments.
- whatever gets you through the night and helps you.. but there might be consequences.... or maybe not!
- don't think there is any evidence that changing diet if you are already eating nutritiously will make any difference at all but no reason not to change if it's going to make you feel better. Make sure you are wised-up about good nutrition though as you might be doing more harm than good! The only dietary links are mis-diagnosed MDS due to Vit B12 deficiency and alcohol causing MDS-like changes in blood.
-why a microscopic bone marrow process which has worked effectively for 30,40,50,60 etc years should suddenly change is the big question. I certainly had not changed my diet/lifestyle before this happened so see no reason to change it as I eat very healthily, am physically fit and slim and have no other medical issues so must be doing something right!!
- I read that Steve Jobs delayed having surgery for his slow-growing pancreatic cancer and instead went on a "cleansing" diet. We shall never know for certain if this contributed to or reduced his 5-year survival - though we might have a view depending on our approach to complementary medicine - but the thing was, he did what he was happy doing and with all his wealth he would surely have had the best treatment possible?
-You pays your money and you takes your choice in these matters. You can go "off-piste" medically and that is a courageous step. Amazing things can happen in the body and nobody quite knows why. But we do have to be careful about the difference between using complementary treatments as a feelgood extra and rejecting conventional medicine which does have a research basis and safety guidelines in favour of unregulated, unproven alternative treatments and I certainly wouldn't want to throw the baby out with the bath water so to speak.

Best wishes to all
Chris