Comments on green words growing: 15

Just found your blog today, greenwords, and am rea...

2011-02-10T10:03:27.716+10:00

Just found your blog today, greenwords, and am really enjoying your writing. Learning to tap dance is my dream, too! I'm well into year six and have just marked three years bedridden. I used to be an herb gardener and have talked the husband into putting in some raised beds at our new house and planting them for me this coming spring.

Having a cranky pants day too - I love that phrase...

2010-08-15T07:57:37.077+10:00

Having a cranky pants day too - I love that phrase :o)but just found your post and feel better already! Your positivity never ceases to amaze and inspire me...
I've had M.E for 28 yrs in all its phases. One day too, I hope I can dance. Couldn't before M.E - but hey! LOL

Greenwords - I stop by when I can to read your be...

2010-08-15T01:19:32.969+10:00

Greenwords -

I stop by when I can to read your beautifully flowing posts. Even when you are writing about frustration and things that anger you, you manage to find a way to express yourself with an exquisite transcendence that can take my breath away.

Though I began my acquaintance with ME as a young girl, I had the great fortune of getting to have some years in a career I loved and moderate activity, with only several weeks a year of being completely bed-bound. It wasn't until a month after I turned 40 that severe ME decided that I would be one of the Chosen Ones to be almost completely bed-bound.

As I come closer to my 50th birthday this Autumn (yes, I think seasons should be capitalized, too :), something about this 10th anniversary has a weight to it that almost surprises me. I promised myself to end it all if I was still suffering after 5 years, but, here I am. The promise did not feel negative; rather, a weight was lifted to know that I would not abandon myself to endless suffering. That there could be help, of a sort, somehow allowed me to feel less isolated and helpless, and to take up the task of finding positive ways of surviving. What is that quote about the thought of suicide getting one through many a rough night? . . .

So, I focus on every beautiful aspect of life available to me. So lucky to be disabled in the time of laptops and other technology. So lucky to have a supportive husband and others in my life. So lucky to have not been struck down fully in my teens like you and so many others. So lucky to have a couple of "vertical" hours for every twenty-four. So lucky to almost always have use of my hands, the ability to take care of my own hygiene, pull a weed or two every six months . . . All things so many of my fellow severe ME people cannot do.

All things that my dear mother couldn't do once she became a quadriplegic at 25. Reflecting on her nine year valiant struggle against the constant pain and extreme frustration of her "new life" have gotten me through many a bout of temporary paralysis, many a near-death day. And reading your posts - aware of how much energy they take - have given me many moments of escape, many hours of feeling the comfort of solidarity. I am so thankful for the light touch you bring into the WEIGHT of ME. Please know what a HUGE gift you are giving to me and so many others. This gift of your courageous, witty, deep, sarcastic, gritty, whimsical, erudite, and beautiful soul.

-Kandice

I can't believe I missed this post, but am so ...

2010-08-05T12:54:47.347+10:00

I can't believe I missed this post, but am so glad I finally read it! What a touching story - I've forwarded this on to my mother, who has a distant relative who has your same illness. Saying you feel like you're buried alive makes me cry for you, and if I had one wish I'd wish the illness left your body so you could dance. I think you're incredibly inspirational and am glad to have connected with you.

Hi all, sorry for this belated reply, have been fe...

2010-07-23T20:51:52.367+10:00

Hi all, sorry for this belated reply, have been feeling bad for not getting to it until now. Thanks so much for taking the time to leave such thoughtful remarks.

Signs, it is very striking the way we all count the years. Nobody has to think twice about how long they've been 'in' for.

Sofa Karen - SATC is definitely not an occasion for cranky pants! Am a bit behind in my blog reading but hope to catch up with yours again soon.

Juliet, how did the jumping on an electric fence go? Am glad to hear you can potter in the garden most days, I bet you love every minute of it.

Hello there, Priscilla, thank you for your words.

Meg, I have to tell you that my husband said your comment is his all-time favourite. Has your new little one arrived yet? Would love an update!

Ros, I have been enjoying your blog and learning more about your condition. Can't believe you were made (more) ill via processes that were intended to help. What a story. You're so right that finding others in the same leaky boat makes all the difference, though.

xoxo to everyone!

Hello there :) I am writing to thank you for your...

2010-06-18T23:52:03.523+10:00

Hello there :)

I am writing to thank you for your recent comments on my blog. I really appreciated them. As you know I have only recently discovered your blog through the ME Awareness work this year. I think it is fantastic, though I have so far had energy to read only snippets.

I am a mere baby in ME terms (4 years this bout) but I think the worst thing about having it is the uncertain prognosis. It is very hard to remain positive when stuck in this on-going situation. However what has really helped me is slowly discovering others out there who are in the same leaky boat as me. Finding friends who actually "know how I am feeling!" That is the best thing.

Your writing is a fabulous example of how we can get through life with this delightful chronic illness, by our inner strength and support of those around where possible.

I especially love your 'Cure Ideas' section - my personal favourite, maybe if you did more, you'd feel better? And your "But you look so well!" count - think I might start one of those myself if you don't mind??

I'd really like to wish everyone much love on our journeys together.

Love Ros xx

Hi! I am going on 18 years with this illness. Some...

2010-06-12T14:45:03.133+10:00

Hi! I am going on 18 years with this illness. Some years have been better than others.

I have an almost two year old little girl and another one due any day. Most days I think I am insane having children. I struggle so much taking care of my little girl, and now I am having another one. I rely heavily on other people's help. Which is hard on my pride and my motherly instincts. And I wonder if I will pass this along to them, or will they be resentful because of my limitations.

On the other side of the coin I am so blessed to be so loved and to have so much love in my life. My husband, my child and the one coming, and family and friends who do care and understand. Who I couldn't survive without.

I don't know what the future holds. I don't know much of anything.
Except that I still can be loved, and love back, nurture and be nurtured, laugh, have fun, and be happy...although maybe not in the usual way. Maybe in really small ways.

I think that your blog is very valuable. It has been to me. Many times it has made me feel less alone. It has nailed down feelings that I couldn't begin to explain to myself. I've even made others read it so they can "get it" better. It has helped me.

And I thank you.

Meg

It's so hard, and you still live beautifully.

2010-06-11T07:20:01.156+10:00

It's so hard, and you still live beautifully.

Thank you for your visit to my blog the other day ...

2010-06-07T06:17:14.466+10:00

Thank you for your visit to my blog the other day - I'm happy to meet another gardener with ME too!

Sorry to hear that you're feeling cranky - though I think it's a perfectly reasonable way to feel sometimes, when you've been so ill for so long. I've had ME for 19 years now and I get cranky as well, though my ME is on the mild side of moderate and I can get out there and potter in the garden most days, which does help.

But I'm glad that you're still thrilled to be breathing and view each day as brimming with possibility - and I have to say that this really shows in your blog. I've only recently discovered it and haven't had the time to read very much of it yet, but the posts I have read come over as being full of life, hope, and humour.

And I love the cure ideas from laypersons ... I'm off to jump on an electric fence ;)

Just wanted to say thank you for using some of you...

2010-06-04T01:49:54.927+10:00

Just wanted to say thank you for using some of your very precious energy to reply to my comment and to visit my blog. I'm really touched.

SATC was sooo much fun. But definitely not a day for 'cranky pants'!!

Sending you love and energy....xx

Beautiful pants, lovely writing. It is very strik...

2010-06-02T15:27:19.201+10:00

Beautiful pants, lovely writing.

It is very striking how we all count the years, as though we need to keep scratching the marks on the walls to help us make sense of it.

What you write here about your lived experience counts - really counts. You have a way with words, Greenwords.

Hi Sofa Karen! Thanks for dropping by and for your...

2010-06-02T11:41:44.129+10:00

Hi Sofa Karen! Thanks for dropping by and for your thoughts. I did have a short moderate M.E. period, so I know there are challenges wherever you are on the spectrum - and 6 years like you've 'done' is still a long time, by anyone's count.

I am a first time visitor to you blog, hello!! Thi...

2010-05-27T03:15:42.616+10:00

I am a first time visitor to you blog, hello!! This post is so moving. I have M.E. but it is moderate and I've only 'done' 6 years. I have found this tough enough so I can only imagine how 15 years of severe M.E. has been. My heart goes out to you. You are very brave to be honest, honest is hard. I think you are perfectly entitled to have your cranky pants on!!

xx

dotsandyarn, thank you for the happy 15th wishes, ...

2010-05-23T22:39:33.161+10:00

dotsandyarn, thank you for the happy 15th wishes, and thank you also for your thoughtful remarks, certainly food for thought. I know there have been times when someone else's story leaves a lasting impression on me.

Kerry, would love to see a photo of your pyjamas! Thank you for your lovely long comment. I was hesitant about mentioning it, but I know many people with this condition have contemplated ending it, so we might as well be frank about it. I'd never want anyone reading this blog to feel encouraged in that direction though, we all must fan the embers of hope for each other. Now is not the time to be giving up, as Nancy Klimas says.

Kate, thank you for your heartwarming words. Would love to hear more about you, if you feel like commenting again in future. Love your name too, one of my dearest friends is a Kate. :)

I love your blog and have done for sometime ,I alw...

2010-05-21T19:42:09.520+10:00

I love your blog and have done for sometime ,I always feel a little less alone when i read it.Thank you.Kate.

Oh what an awesome piece of writing this is! From ...

2010-05-21T03:07:37.604+10:00

Oh what an awesome piece of writing this is! From one ME/CFS veteran to another, you've told our truth masterfully.

I applaud your courage to be vulnerable about the thought of ending it...to share that the brutality of this illness brings us all to our knees. The decision to stay and hang in there is a courageous one in itself.

I too after twenty years, now hope for improvement and to be able to see any bit of progress that brings the truth of this illness to light...

I'm so glad you are here, that your blog which holds your story is here. I am strengthened in my journey by your journey.

... AND, I THINK YOU HAVE THE CUTEST CRANKY PANTS PJS! Makes me want to find a pair cute enough to photograph. Hope you are feeling as well as can be today. Again thank you for this beautiful, truth-filled post!

Happy 15th - if one can say so. I had my 15th year...

2010-05-17T22:03:15.188+10:00

Happy 15th - if one can say so. I had my 15th year last April. I used to think like you about living with chronic illness before I had to experience it first hand. It's not an easy task to achieve with grace and sail over all the bumps (e.g. people not believing you, bad days) with enough ease to be able to enjoy the good days.

Even if it seems little to you, your words might change the world to someone else. Thank for keeping it up even if it feels like whispering in a football stadium. One day you might be amplified. :-)

Amy, 19 years – ouch! Thanks for sharing more of y...

2010-05-17T20:01:20.871+10:00

Amy, 19 years – ouch! Thanks for sharing more of your story and as always, expressing your kind thoughts and solidarity. (I have always felt ambivalent about blogging and presumably always will, but not quitting just yet.)

Ashy, love the idea of everyone posting a picture of their best pair of pyjamas! Yours sound lovely. Hope you have more dancing days very soon.

Dominique, you can borrow my cranky pants anytime. I hope things don’t go backwards in the US as you fear. Love the Cervantes quote.

Emma, the email letting people know there’s a new post provides a snippet of the beginning to show the topic (it’s a partial feed and is the same in feed readers), so people can decide whether or not to click through. I’m sorry the links aren’t obvious enough, there are three in each email but I agree that they’re not sufficiently prominent. Feedburner formats them like that and there’s no option for me to make links underlined, which is bad for accessibility reasons, but the title of the post is the direct link. I have changed it so the title will be a different colour from now on (green!) which may hopefully make it easier? Have also updated the subscription info page and will see what else I can do.

Ash, that’s interesting, I too was initially told it would be short-lived and that I’d definitely recover. Various disastrous management approaches ensued, I was in a factual information vacuum which didn’t help matters. 3 years seems an arbitrary sort of number to tell you? I remember reading in an Australian magazine that it usually lasted 8 years. Was horrified at the time, but of course would be thrilled now if it only had have been 8!

kp, thanks for your remarks to Emma, you’re right, it’s the post title that’s the link. I read recently of someone organising a campaign of collecting socks (called ‘Sock it to ME’) to show the numbers of people ill, which is interesting. I guess they’re smaller than pyjamas.

Laurel, thank you so much for your kind words!

Amanda, thanks for your comment, I’m so glad you and your husband have had a reasonable time accessing services. I love a good news story! You’re right that accessing services is a problem right across the community, I guess with your OT background you’d be very aware of that, I have been thinking recently that disability services in Australia are, on the whole, woeful, and it’s not just PWME who are affected.

Hiya and thanks for visiting my blog and taking th...

2010-05-17T11:19:00.704+10:00

Hiya and thanks for visiting my blog and taking the time and energy to comment. I was dismayed and shocked to hear about your trip to the endocrinologist. I know I am really lucky with my medical situation. I have a doctor who is a physician and he specializes in CFS. My husband and I have faith in his abilities and with his support we've had a reasonable time accessing the services we need. There's a lot of symptomatic relief to be had from allied/alternative health therapies and they are much more difficult to access because they are so minimally funded by medicare, but that is a problem right across the community. I do know that when I lived in Melbourne for 2 years and hadn't found a doctor who I trusted, I felt not only more ill, but scared, vulnerable and angry. I do count my blessings, and I know not everyone is as lucky. (I'll post this on both your and my blog, because I want to make sure it reaches you). Take care! xo

This post brought tears to my eyes as well; I coul...

2010-05-14T00:19:12.573+10:00

This post brought tears to my eyes as well; I could relate to so much of it (14 years for me). Thank you for your beautiful writing, and expressing many of the thoughts I have myself. And I love your cranky pants! :)

hey emma, i found if i just click on the title in ...

2010-05-13T20:29:24.103+10:00

hey emma, i found if i just click on the title in the email (15 in this case) it takes me here...wonder if that would work for you too?

always thought the PJ's would make a good awareness campaign - we certainly spend enough time in them and they symbolise a lot about how our lives are.

just been thinking about the years thing myself (for the 'what about me' project and realised that it's 19 years since i first got sick at 13, 17 since the ME/CFS set in for good and 12 since fibromyalgia entered my life. this would be why i try not to think about it i suspect! and couldn't agree more on the how would we have made it this far if someone had told us at the beginning we'd still be sick now...

Only clocked past yr6 in Feb into Yr7 & thankf...

2010-05-13T13:33:42.644+10:00

Only clocked past yr6 in Feb into Yr7 & thankfully not as badly affected but still, I never thought it would last this long & the number of people I know who have had it for 2 or 3 times longer than I is amazing, in a really sad way.

When I was diagnosed I was told it usually sorted itself out after 3yrs - seriously who only has this for 3yrs?!?

Hi! I subscribe to your posts and just wanted to ...

2010-05-13T09:50:35.231+10:00

Hi!

I subscribe to your posts and just wanted to let you know that I only get the first 4 of 5 lines of your post. I assume that's because you put breaks in - but it means I don't get the whole post. There's also no link in the e-mail to take me to your full post (or none that I can see!) thought you might like to know that.

Loving your cure ideas! "Just fall in love" was a suggeestion by my (ex) best friend!

I just noticed the Aristophanes quote. Love that....

2010-05-13T09:05:47.735+10:00

I just noticed the Aristophanes quote. Love that. One of my favorite quotes is by Cervantes: The pen is the tongue of the mind. Thought you might like that one! :-)

I think I want a pair of 'cranky' pants. ...

2010-05-13T09:03:31.388+10:00

I think I want a pair of 'cranky' pants. They look really comfortable. LOL!

I can relate to your story. I have been sick for over 20+ years now. It is amazing that we have made it this far, huh! And we still have our sense of humor, our tenacity, and our determination.

Like you I am not impressed with the lack of progress in finding a cure and I have this horrible feeling we may be taking a wrong turn here in America. I hope I'm wrong but the writing seems to be on the wall as they say.

I'm really glad I discovered your blog. I am really enjoying it. Glad to 'meet' you cranky pants!

You know, I just realized that I've been cranky for the past 2 days! Look who's calling the kettle black! Can I borrow your pants?! LOL