Wednesday 13 March 2013

M.E. Herbalist

I bring to you today, the story of another small trader, who has M.E.. If you're interested in herbalism, or seeking herbal product from someone who understands the condition, Merionwen is the business you want to look at. Here is her story:

Around six years ago I was married, had two smashing children and a job I loved. I had spent years working in the heritage and tourism sector. I provided costumed interpretation for a variety of heritage sites. Bringing entertainment to education and a sense of fun to stuffy museums. Prancing around castles being everything from the cook to the lady of the manor.

I was lucky enough even to be able to involve my children. It was long hours and involved a lot of background research but I loved it.

Then disaster struck. I had been diagnosed with gynaecological problems and severe anaemia. I just couldn't seem to find any energy.
I continued to try to work but my lack of energy started to show the cracks in my marriage.

I devoted all my time to my children foremost and then my career. I expected support and understanding from my husband but that wasn't to be.

Eventually the marriage became untenable and we went our separate ways. I suddenly found myself cast in the role of a single mother. Financial support was non existent and work pressure increased.

This stress was then compounded by my father falling ill and what seemed at the time as a minor car accident.

I suffered serious whiplash and I was left with back pain that never seemed to recover.

Next came the constant round of tests and doctor's appointments. I kept returning asking for blood tests and a reason why I just couldn't seem to get back on my feet. I was constantly bone weary but this was coupled with the searing pain that never seems to settle in any one place. I had constant muscle burn and my fingers and toes would feel so swollen I couldn't walk or pick up a cup of tea.

this all came to a head one day when I found I couldn't wash my own hair and cried out with pain when my daughter hugged me.

So back to the gp and a long and frank discussion. It was suggested I had fibromyalgia coupled with cfs.

Further tests proved this so.

I went on to be prescribed a battery of SSRI's and painkillers.

Over the following two years I put on five stone in weight and had to give up work. I just couldn't cope with being a single Mum and live with this illness all the while keeping up with my career.

It broke my heart the last time I said goodbye to my workmates.

I felt at my lowest ebb.

But, things were about to change. Almost like a bolt from the blue I was to meet my current husband to be, Andrew. We were sat at the table of a mutual friend while I expressed my loathing of the male species. Then he smiled and made me tea.

There is more to the story than that but lets just say over time I fell deeply in love.

He opened up whole new way of thinking for me. When discussing the medication it was him that first made me question whether the side effects were not as bad if not worse than the illness itself!

I am pleased to say I am free of all synthetic medication. I take a variety of supplements and have made vast changes to my diet.

Don't get me wrong. I am by no means cured. But I do cope! Rather well at that!

It was also himself who asked why I was not trading as a herbalist. One of the key parts I have played in the past is that of an herbalist. I know the subject back to front.

I told him how EU law suggested I needed a formal qualification. So he asked "why not get one then". Frankly I had no answer to this.

I went on to study Phytotherapy at degree level, a higher diploma in massage therapy, Advanced aromatherapy and most recently cosmetology (the study of natural skincare).

I am now proud to say my chosen career is that of an holistic therapist. I am able to work at my own pace and have a good client base.

However, that was never going to be enough. Over many years I have formulated and produced my own skincare products. These have been given as gifts of used by myself.

It is now time to turn the hobby into a business.

I am launching my own range of organic, natural skincare. IT is called Merionwen and is a business I feel very passionate about. four years ago I never believed it was possible to achieve these things and live with illness.

I have proved that that is not the case. I shall make success of this and I hope everyone else who has lived with any sort of set back can take heart and see what can come to pass.

I am attempting to get Merionwen on it's feet with a crowdfunder pitch. There are a variety of splendid rewards for anyone who invests.

What could be better than organic, natural, spa quality skincare?
Well all deserve a little pampering...
You can find Merionwen here:

Thursday 7 March 2013

See the Invisible

When you tell someone that you have M.E., most people tell you that they knew someone who had it, who had got better. Presumably most of these people are mistaken, or they all knew the same handful of people, since the rate of recovery is extremely low. Having said that, if people see you leaving the house, they presume you are better. If you fail to mention M.E. every time you see them, they presume you are better. Most people just generally assume that M.E. is a mild condition, which most people recover from with ease.

It is not. 

I've actually had people ask me why they don't see any of these really really sick people. It seems a really dumb question. It actually says quite a lot about the image M.E. has, rather than those people being particularly dumb. For example, if you assume you have flu when you actually have a cold, then you can't understand why others with the flu are throwing up, sweating hot and cold etc. You understand? It's the same with M.E.; it is NOT this mild affliction that the public have assumed it to be. The people you have known, or do know, who have M.E., particularly if you've not met them online, are most likely to be very mild cases of the syndrome.

The serious cases, those with 'moderate' or 'severe' M.E. are seldom seen. Those with extremely severe cases often can't even use a computer, so you won't even meet them online. Imagine that all you can cope with is lying in a dark room, in silence, every movement hurts. You feel constantly nauseous. Your skin burns, freezes, and itches, for no reason. You can tolerate few foods, so have either been losing or gaining weight for the duration of your illness. You practically rattle from the amount of medication you're on. Your limbs feel as if they have weights on them, and you can't tell whether you're holding something or not as your hands are not only in considerable pain, but are frequently numb too. Can you imagine how totally isolated these people feel? What are they to hope for?

A friend of mine, has been in so much pain that she has not even been able to talk. She just discovered that she can talk again, so to celebrate she made a small video. It's extremely illuminating. Please, view it. You will start to understand where the invisible sufferers are, what it is like for them:


Hello, ummm. Oh, I've made this message about three times, this video, and I have managed to cry all the way through. I am so distressed today, and I am so on fire, and I'm so shaky, and generally scared by what's happening. It's also a very very personal video, and I promised always to be very honest with you, but it's quite hard, coz the British English girl gets all sort of .. she wants to hide! Also I am fully aware of the irony of making a message like this, when I look like the wreck of the ##. But, you know, I'm sure I would scrub up all right, honestly, with .. uh ... a couple of ship loads of make up, and a hair brush would be a good start!

Anyway, the thing that I wanted to say, was that, I'm very afraid of dying. I think about it all the time. Ummm, the pain is so unendurable, and so constant, that in some ways there isn't any reason to be afraid of dying, because it would be an ending to something that is, on a daily basis, unendurable. And everyone who has M.E., is enduring the unendurable all the time. And we find things to laugh about, and we have each others, and we have our families and things like that, but it doesn't take away that the pain is constant and unrelenting and bit of a spiteful bully really.

And, and, I think about dying, and it it it terrifies me because I feel like I'm unfinished. I feel like there is so much of my life that I haven't lived yet. I got ill at 12, and was housebound by 15. I'd like to go to university. I'd like to travel, and I'd like to kiss boys(!), and I'd like to hug my friends, and to learn to fly a plane, and go up in a hot air balloon. I'd like to ride horses, I'd like to write books, I'm mean there's just so much I want to do. And life is so beautiful. The idea of not getting to actually live it is quite heartbreaking. But, when it's really really bad, I think .. well I do believe in heaven. I would probably do all of those things in heaven, except for kissing boys. And, I can't tell you what a heartache it is to think that I might die before I fall in love, before I ever really get to kiss someone. I mean I have kissed people, but it was absolutely disastrous *laugh*. Well, perhaps I shouldn't say that in case they watch this! But, it was not a fairy tale.

And, I've never danced close to someone who really matters, and no one's ever fallen in love with me, or been tender with me, or made love to me, or any of those things. And it feels like such a heartbreak to me, that I may never get those things. And, when I'm in my bed, and the fire is everywhere, even breathing becomes a mission, that's often something I think about! I think "I can't die, I can't die without knowing what all those things feel like", and I hate the idea that, in this world, because of the way doctors are neglecting people with M.E., there are hundreds, if not thousands, of young people, dying without having such ordinary and beautiful things.

I really really don't want to be one of them. But, even if I am, there are others going through it too. I mean, none of them would want to be one of the ones who didn't get those things. And it just seems so appalling to me that so little is being done, when life is so wonderful, and we would have every opportunity to live it if we weren't ill.