A Conversation for Myalgic Encephalomyelitis (ME)

A Fellow Sufferor

Post 1


Interesting article, only wish I'd found this a year ago !

Was diagnosed in March 2002, and have struggled ever since with the symptoms, recognition, research for therapys etc. Slowly getting there. I have to say if it wasn't for the people closest to me, I don't know how I would have coped. You certainly learn who your true friends are. I lost my job over it !

But on a very positive note, it has turned around my thinking about life. My world became a much smaller place, literally over night. I had to start to be selfish, not in my nature, always put everybody else first. I got off a corporate merry-go-round I didn't even know I was on. I am no longer a puppet, and feel more powerful in creating my destiny. My quality and expectations of life are a million times greater !

smiley - magic

A Fellow Sufferor

Post 2

Lighthousegirl - back on board

Hi Bubbles

Great to hear from you smiley - biggrin

I am glad you found the entry interesting - I certainly found when I was diagnosed that it was hard to find anything sensible on the subject.

I am also glad that you have found so much out as a result of what for many people can be a negative experience. There is far more to life than the corporate world and quality beats quantity every time - although that having been said sometimes I worry my life is becoming too quantity focussed again smiley - erm

So a new destiny to create? I think I read you are exploring lots of creative avenues - I have never tried batik but have done a little silk painting which I really enjoy. Before I took a job I care about passionately (which is waht takes too much of my time) I used to make silk scalves and greetings cards in my spare time which I sold at local craft markets. A real treat to be able to make a hobby pay for itself!

Have you had any thoughts on what that destiny / direction will be?

smiley - lighthouse

A Fellow Sufferor

Post 3


Hi smiley - lighthouse !

My destiny....hard to say really, I would so love to air on the artistic side, but I need to earn money to put food on the table, my artwork is not that good smiley - laugh

I too am concerned about getting dragged back into the quantity thing. There is not enough spiritual (not religious), emotional and mental stuff to make the world go round. Alas everybody craves for physical objects, and thus that is what keeps us spinning ... greed !

How did you find the silk painting ? I am on a slow learning curve at the moment with the batik, I have all the tools, the tjantings though are causing me some strife ! The wax flows too quickly and I am just ending up with splodgy art !

Finding batik was the best thing for the ME, it is just soooo relaxing ! And as a newbie finding hootoo is good for the ME I have made so many good friends and that is in just a few days, they are very caring, particularly when you find people in the same predicament as yourself.

I would very much like to improve 'my space', and in time I would love to write an article, not sure of subject, will be on something I am passionate about ! But, slowly, slowly catchy monkey ! Got to learn about the process etc, time is on my side which is good. I really believe in H2G2, to beable to come on line, meet great people all over the world, learn something new, share in yours and others knowledge, I can feel my brain growing is size already smiley - laugh

I am in Surrey England, where abouts are you located ?

Must smiley - run chores to do smiley - sadface

Great to hear back from you smiley - lighthouse, would be good to catch up soon, if you could advise of any good threads, or researchers that would be really useful.

Speak soon

smiley - magic

A Fellow Sufferor

Post 4

Lighthousegirl - back on board


Good to see you on line again!

I am not sure that being good at art is the same as being able to make a living at it - I managed to get the silk paying for itself and I remember being told by my teachers at school that if I chose Art they would resign as I was terrible and unteachable - I consistantly failed the Art exams - and I did not think that was suposed to be possible!

I love the silk painting -the colours you can get are amazing - I am largely self taught and as such my techniques are kinda different. I find the outline techniques quite difficult but persist with them. I gather that silk outlining is easier than wax. With silk outliner you can work from a tube or I found some outliner pippetes which work more like rollerball pens where the ony secret was to draw really slowly! I also like the fact with silks that the results can be seen quite quickly. I have only really used the heat fix paints although some of the best colours come in the steam fix versions.

What drew you to batik? Do you find when you are doing it time slips away? I also make cards a number of other ways which I enjoy too - its so much more rewarding that just buying them. Recently I have tried tapistry too. My job takes me away from home during the week which means silk painting or card making which need lots of things are inpractical and after a hard days work reading a book is relaxing but I long to be more creative! That having been said I am also trying (with very little success just yet) to teach myself to do cryptic crosswords - a particular challange for me as I am mildly dyslexic!

I am very lucky I have been gradually able to build back up to holding down a good job back on the corporate side. I am passionate about my work and as a recovering workaholic I have to work really hard not to get so wrapped up in it that it takes over everything. I am lucky in that I work for a company which is respected for its social concious which makes me a lot happier - they also have a great phylosophy about people and my work is about maintaing and promoting that - what could be better than a job where you know you make a difference to individuals and to the company?

I am glad you are enjoying hootoo - there are certainly people here who I would count amoungst my best freinds and they have been there for me when times are tough. I come to this place to play and laugh as well as to try and learn to write. I seem to get to do all those!

It would be great if you wrote something - a word of caution though - I cared passionately about this piece on ME - there is a real lack of good information! This made it really hard for me to call it finished and let it go. Certainly write on something you know a lot about and basically just go for it!

Where am I located - thats one of those questions that should eb easy but my answer depends on when it is! Home for me is in rural Oxfordshire (another reason why having somewhere to go without leaving home is important for me) I love it here - tiny village in great countryside. During the week I live in digs up in Birmingham. What gets me is that even though I dont live here most of the week the chores still mount up smiley - erm

OK - ACE hat on - great places to go and people to meet - there are so many! The advice I usually give is to follow your instincts and just jump on on! I know lots of great people and many of them are subscribed to my smiley - blush fanclub. Please feel free to drop in there and say Hi - and then to check out any of them who interest you - they are a pretty diverse bunch but all are wonderful! You seem to be finding your way round OK but if you are not sure how to do any of this just let me know and I will point you in the right direction!

Mmmmmmm The washing machine is calling!

Catch you soon

smiley - lighthouse

A Fellow Sufferor

Post 5


Hay smiley - lighthouse !

Great to hear back from you ! smiley - ok

I have come across some lovely batik work, mostly in my teens, when Mum and Dad took me to great places in the world. Amazing that having loved art so much, I had never developed the intrigue for Batik itself. Then a month ago, my boyfried and I went to Malaysia for a relax holiday, spent mostly by the pool, drinking yummy drinks. Somebody happened to mention that there would be a batik class by the pool the next day. I have done quite a bit of artwork on material, but not batik, so I thought I'd give it a go. I loved it, was so relaxing, I spent hours painting, loving the attention to detail. That was it, I was chuffed with the end product and decided that as soon as I landed back in the UK I would research and have a go ! I mostly do geometric designs and so this sits well with Batik. If you look at batik from Thailand it too is very geometric, and very rich. Great inspiration !

Time does slip by, bonus is that it is helping with distraction techniques for me giving up smoking ! Although not succesful at the moment, that is another goal I WILL achieve ! smiley - erm

I try to make alot of my cards, I have great fun, and it is very personal. What techniques and materials do you use ?

Impressed with the criptic crosswords, very proud ! I am utterly useless at the moment, particularly with the ME, you need concentraction, and its just not there at the moment. Tires me out !

How do you cope with being away during the week ? You are very lucky to work for a 'social conscious' employer. There are not many of them out there. I am happy to no longer be working for my previous employer, theres more to life than politics and watching your back. Over what kind of period did you work yourself back full time ? So great that you can have an impact on peoples everyday working life, fulfilling ........smiley - biggrin

My parents lived in a tiny little hamlet near Lechlade, have you heard of it, I know Oxfordshire is a large county ! Beautiful part of the country, I spent quite a few happy years there ! But alas they have now retired to Spain, what could be better......smiley - ok Although it has made it tougher for me to see them, because of the ME, and even worse than Dad was diagnosed with Cancer last September. But we'll get there. We are a very close, loving family smiley - hugsmiley - hug

I am still pondering the writing of an article, the inspiration will suddenly strike me smiley - cool and then there will be no stopping me !

must smiley - run

smiley - magic

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