Hello lovelies 
A bit of an unusual post for today. If you pop by regularly here you know I usually write about what makes me happy, like cakes, frilly pants, or my latest doodles . Anything I have found pretty or yummy tasting usually ends up here really.
But just lately it’s been hard to concentrate on any of those pastimes and loves because something strange has been happening. And because this is an honest place, and also because you are all honestly my friends, I wanted to share it with you. But I promise all normal silliness will resume after this post, just wanted to let you know what’s been going on in the world of ickle. Sometimes things do take a more serious turn don’t they? , but I guess that’s how you appreciate the jolly bits *wink ! …
When I was a little girl I had lots of dolls, most of them were plastic with big yellow hair and “boobies” and I never really warmed to them, but one day my mum bought me a set of little china dolls. They had tiny White painted faces with rose petal cheeks, big eyes and finely painted fluttery eyelashes. Their bodies were made of soft cloth but their arms and legs were bone white porcelain, I can’t tell you how much I loved them, I adored them.
I put them to bed with me each night and played with them constantly. Then one day I dropped one, my favourite one. I heard her crack , I picked her up and her tiny leg was shattered. There was a wire running through her leg from knee to foot and it was holding the biggest china shards together. I knew if I showed it to anyone she would be taken away, the sharp bits too dangerous for a little one to hold. So I took her quietly upstairs to my room. She had a very long velvet dress and I smoothed it down past her brokeness, the dress was thick and it covered all the damage.
And no-one knew, not for years and years except for me what was underneath that dress. But I couldn’t play with her anymore so she just sat and watched the games we played. And that doll never let on, she just gazed out on the world with her pretty glazed eyes.
Your probably wondering where this is going, but let me just explain. Or rather start from the beginning…
This year stared with me getting the flu, it was a evil one and made me feel like total death for about a week. After that I still felt off, nothing I could really put my finger on . But weak I guess, and achy. I took lots of vitamins and drank lots of water and got lots of sleep but nothing really helped. And I started to feel worse. Visits to the doctors came and went, tests were done, but nothing showed up.
So I pushed on, and ignored all the pains by taking lots of painkillers and drinking lots of coffee. But I started to feel very strange in my mind too, just like having the flu or when your really drunk, my head filled up with invisible, impenetrable fog. Impossible to think past, impossible to speak past, almost impossible to breath past.
In this greyness, I lost words that should have been just right there to speak. I lost ideas and thought’s in the fog, it was like being in a nightmare where I couldn’t wake up. And I was so tired, more than I’ve ever been, even when the kids were babies. I thought maybe I was going mad, or maybe I was depressed, so I kept very quiet about the pains in my legs and the blankness in my head. And I just sat and watched, doing as little as possible , sleeping whenever I could. I watched, in a the distance it seemed to me, as the year flew by.
Then one morning a few months ago I woke up in lots of pain, from the top of my head to the very tips of my toes was agony. And I was tired sooo tired. The energy required to open my eyes was too much. I lay there thinking if someone comes in and tells me I’ve been in a car accident I won’t be the least bit surprised. I wasn’t of course, but I couldn’t move for over a week.
Now I can’t walk far. And the stairs I used to run up with milly tucked under one arm seem like mountains.
If I do try and walk for more than a few minutes, everything seems to run slower and slower until I just stop dead. like I’ve run out of fuel. I was thinking about it, It’s a bit like being one of those inferior bunnies on the Duracell battery ad.
I used to be the one that kept going, now I very literally, slowly grind to a halt. I went for a little walk with the family yesterday for the first time in ages. By the the time we got near our house I was just shuffling , using millys buggy for balance, like an old lady, concentrating on every tiny step. Then comes the pain, everywhere! the pay off for any exertion is high 
The funny thing is the less I do, the better I feel. When I’m properly rested I can catch almost all of my thoughts and I can take on those stairs without needing to stop half way up. But as soon as I try and do things again I fall back into the darkness. Its hard and a bit cruel to be honest . Who wants to live just watching ? Sitting on that shelf, I seem to have my very own brokenness now, one that’s hard to see, Or understand .
I finally got a diagnosis this week though after lots of tests . I have something called CFS/ME , a chronic illness, probably brought on by an infection. Very little is know about it, but they think it has something to do with the way your blood cells work ( or don’t).
The doctor said it might get better, or it might get worse, it might just stay the same. But people rarely come out of it the same as they were before. It’s odd to think about that, how “normal” things were before, and how easily we can get “broken”.
As a wise Sting once said, “How fragile we are? “. Ain’t that the truth!
On the plus side though, it’s given me a lot of time to think. To pick out the things from my life I treasure. The really important things that are “worth the energy” and also weeding out the things that simply are not. Because now, I really do have to choose. So you could say in that way I’m lucky, Silver linings xxx
This post is dedicated entirely to Helen ( @HelenW71 ) and Kat (@secretsofabutterfly ) Without you both, these last few months would have been far more dark and confusing. Your both my hero’s ! X
Tags: Chronic illness, coping with ME/CFS, Foggy brain and CFS ME
Even the Duracell Bunny will run out of batteries some time hunny… I should know that…
Enjoy the good things you are learning! they are what make life worth living!
big big biiiiiiig bear hugs!!!!
xxxY
Your so right! and thanku too for all your help, that spoons piece you sent me really put stuff in perspective. Really happy i got to know you through such a weird thing, one of those silver lining things ;D XXX
Oh my lovely wifey I can’t believe all that you’re going through. I don’t know if I have the right words but please know that we love you very much and fog or not, we’re always here for you. Big gentle hugs you gorgeous thing you xxxxxxxxx
Thanku Wifey! Your such a super friend (one of my oldest, but not in years
) its lovely to know your always around for a chat and that’s something you really need when your stuck inside all the time. Gonna need some serious Saint Tropez soon, or they’ll be calling me up for the next twighlight movie 
xxx
I read this with tears in my eyes. I do hope that you manage to rest and to take it easy and that you get better soon.
It is hard to have to watch life taking place whilst you sit on the sidelines. I know that
Oh Lovely I know your going through your own stuff right now, its so lovely of you to send me support too. Love and hugs, we *will* both be okay
xxxxx
Oh my goodness what an enormous mountain you have had to climb. I really hope the fog begins to clear and that you get better soon. This is a beautifully written piece, I read it with my mouth open and ended wiping tears from my eyes. Much love to you. xxx
Thanku so much Chris, it was so hard to write but has been the most brilliant therapy and peoples hope and kindness i honestly will never forget. It can be a very lonely thing, this illness ( as all can I guess) and this whole blog post has given me so much hope and smiles , and HUGS! thanku ! XXX
Oh Helen, I don’t know what to say. Now its your turn to make me cry. You write so amazingly. I am so so sorry lovely lady. I can’t begin to imagine how this must be for you. You are one of the first people I met on twitter. (remember the Ralph Lauren Jacket ? ) It seems like we have known each other forever and been through so much together publicly (and privately). I am so sorry I haven’t been there for you as much as I should these last months. I did think many times that it was odd that you had so much illness but I suppose I put it down to you having a germy toddler in the house : ) and all the other “stuff” you told me about. I am so, so sorry I haven’t been more caring to you.
I don’t know how I can help you practically, being so far away. Always here in a DM sweetheart. xxxx
LOL! Oh My, I totally forgot about that! thank god for Ralph Lauren ;D You have always been THE most amazing friend to me and I know we will be friends forever. Love and massive massive hugs my pal
xxxxxxx
*hugs* it’s always the little things that matter, that really make a difference. Keep on finding them, keeping them close, keeping you smiling.
And it sounds like you’re finding the time to find them and draw them in to you. Keep going
Thanku so much Mr, leaving a *wink, Just for U !
I don’t usually check twitter much, but I’m glad I got a little email telling me your tweet as that way I found your post today. You have written it so beautifully darling. Believe me I know how hard it is to write the hard stuff without wanting to seem to grim or self centred. Your balance here is spot on. You’ve summed up the reality but YOU still shine through.
The first year or so I had such a similar ride to you with the pain and the fog. And I’d rest and the try school again, lasting a week before I’d be off again, and then a week turned into a few days, a few days into half a day before I had to stop again.
I wanted to say though that it does morph & just because you have pain now doesn’t mean it stays. Yes the fatigue may and the need for recoup time, but that can be sorta worked round easier (sure you’re learning that as you go)
Also the more severe cases tend to be in people who get it younger, like I was in my teens. So it’s in your favour that you’re older. It is much more likely to stabilise and even abate. Especially and this is the big thing, if you rest as much as possible in these early onset times. Don’t be tempted to push, try not to take stuff to get through. Or if you do make it just once in a while not everyday. I know that’s hard with a family to care for. But it’s worth it now.
Thank you for your words to me at the end. That means a lot.
Lotsa love babe, kat xoxo
Thanku for EVERYTHING Kat, and most of all thanku for being my friend. I will always cherish that XXXXXXXXXXXXXXXX
Oh my, if ever a post was written to remind us how precious our health and family our then this is it.
I’m so sorry you are going through this but nice to see how much love and support exists here for you. I hope you begin to get better very soon.
Xxx big hugs xxx
Thanku Karen, your right, if you have your health, you honestly have everything :0) Big thanku hug back XXXXXX
feel for you, I hate being ill for a few days, and am normally a right grump about it. But its good you can see the silver linings and lets hope they shine brighter everyday. Big hugs x
Thanku Aimi, its so lovely of you to send me hugs, this whole experience has shown me how lovely people really are XXXXXXXX
I’ve had CFS/ME for 12 years now & yet could never have described it as well as you have in this piece. The all-consuming nature of it, the frustration at sitting broken on that shelf. You write so well lovely lady. I’m so pleased to have been able to have offered you some support over the last few weeks & of course will continue to do so – you know where I am. Hxx
Thanku Helen, I will always always be indebted to you for all the help and advice, even at half eleven at night!
your a star and one of the very very good ones in life! 
Love & Hugs! xxxx
Helen this is a post from the heart. CFS/ME is a very difficult thing to live with, partly because it is all about management rather than “cure”, and it is often misunderstood by professionals. My best friend in the UK has ME, she has had it for a long time, and is learning to manage it so it doesn’t affect her day to day life as much as she can influence things. She has a lot of support (she is recently a new mum!) and accepts her condition much better now. I hope you get the help and support you need too, it’s such a hard thing to have, for someone who has been so energetic in her life…. sending lots of well wishes from NYC x
http://www.styleonthecouch.com
Thanku my Gorgeous Shire Friend, I know your right. its as much about knowing your limitations as anything else. I’m learning its not admitting defeat or being weak, not to do things, more a case of self preservation
Love and hugs back to you and my favourite city! XXXX
Couldn’t not comment, I’ve been following your beautiful pictures on instagram for a while now and knew things weren’t quite right. So sorry to hear your news, but I suppose the silver lining is that now you have a diagnosis you should be able to access some proper help and support to manage your illness. Sending you my warm wishes, you write as beautifully as you take pictures xx
Thanku so much Abby, both taking and painting pictures has given me so much happiness since ive been poorly, Im really glad u like them. Your right, it is nice to at least have a name for it now, rather than the fog or mr darkness! ;’D
Ps, I LOVE your shop xxxx
Oh, lovely, I had no idea. So sorry you are having to go through this. We are all rooting for you. Wishing you much love and strength.
Aw thanku for your kindness Julie, you always make me smile on twitter, and thats what makes things better isnt it? lots of kindness and bloody big smiles! XXX
Thank you for your honesty and wonderful eloquent words!! I have suffered from me/cfs since I was 8 years old, I’ve always found it tricky to say no and have hidden my suffering from almost everyone until earlier this year I started to say no, took more time to rest and the benefits have been huge! I have focused on my kids and occasionally a bit of crafting and am finally learning to live with my condition instead of round it! I’ve learnt to not let it get to me that some mums can do all the normal stuff and go to the gym, do coffee, work etc I am who I am and part of that is the cfs and we bumble along quite nicely now. Hope you have a restful eve x
So glad to hear a story of someone else living through ME chick, its lovely to know it wont always be quite this hard
xxxxxxx
Oh gosh, Helen, I didn’t realise you were having such a bad time of it & I’m so sorry for that. It’s a great piece of writing and I’m welling up for you. It’s great that you’re able to see the silver linings, I have a lot of admiration for that. I like to see the positives in everything but not sure I would if I was forced to slow down to that extent. I just can’t even imagine how hard it must be, sending big big hugs lovely xxx
thanku so much for the Hugs Katie, and thanku for stopping by, Im honestly gob-smacked by peoples kindness and warmth xxxxx
I only got half way thru that post and I knew u were going to say either MS or ME. I’m glad u have the diagnosis, that alone is a great relief! And I’m glad you are seeing the positive and using ur illness to learn from. Life is precious. I wish my mother would see this rather than feeling sorry for herself. I’m sure u will become a great inspiration to others who are suffering. I can see u are an amazing person! Good luck with this new chapter in ur life and don’t let it get the better of you! Xxx
Hi Emma, thanku so much for leaving me such a kind message, I hope your Mum finds her way through one day, its a very hard dark place for her I guess?
xxxx
Your words made me smile and honestly keep me going
Wow lovely lady, you write so eloquently about what you have been going through, maybe a new job is beconning, something that doesn’t take your precious energy, a book on your illness would help others that are suffering too. I thought I got tired with my 10 month old but nothing like what you have had to put up with! Keep you head positive my lovely, you are an inspiration to us all. I hope this has been a cathartic experience for you. Rest well sweet Helen xxx
Hay V, thanku so much! your not the first person ( * cough , Karen
) to say I should just write something for a living, your right maybe this would be the thing 
and with so much kindness around I think I have the best chance of a blummin Happy Ending 
love and big big Hugs for u and ickle Ava xxxxxxxxx
Hey Helen, I’m so sorry to hear about your diagnosis. I knew you’ve been ill and I really hoped it wasn’t gonna be something like this, although I know little about it. I just thought of Kat too and how lucky you are to have someone to talk to who knows exactly what you are going through. I can’t even begin to imagine what you are going through right now and I’m not going to say things like ‘you,ll be fine’ and you’ll get through it’ because I have no intention of being condescending. I really don’t even know what to say but you know I’m always about if you ever need to chat about anything (including planning Noah and Millys wedding
lol)
I know we have never met, but I feel like I have really gotten to know you and you are one of my closest IG buddies
You are a fab mummy and an amazing artist. I really hope you can try to remain positive during these hard times. My heart has broken a little reading this but you expressed yourself so beautifully. You know where I am if you need anything. A million hugs, Claire xxxxxx
Thanku so much Claire, I really really appreciate your friendship, even though from afar. I know your only a picture away, and that’s lovely XXXXXX
Helen,
Well we’ve only been IG buddies a short while, but it’s funny how it makes you feel like you kind of know someone you’ve never met, or at least know a bit about them – like with you your amazing artistic talent and your beautiful family. All I can say is I truly hope from the bottom of my heart that this fog lifts and life gets easier for you again soon. It sounds like you are going through an incredibly testing and difficult time. Without wanting to sound condescending in any way, I think you are so brave to open up like this and just know you have support here for you – even from someone like me, a virtual stranger.
Jules xxxxxxxxxx
Hay Jules, Thanku so much for dropping by and leaving me that message. Its funny but I feel the same, its a special kind of connection you make looking through peoples pictures I think. Its like art, its very personal, you get to know a lot about someone that way. Thanku so much for your kind words, they honestly made my day xxxxx
Hello, I just came over to read your blog from instagram and as I also have M.E. I know how you feel. I’m lucky enough to be in a good patch now and managing work etc but have had ups and downs since I was young. If you need anyone to talk to about it, just let me know. It’s hard to get used to a condition like this, but you can do it, you can ask for support, and it’s obvious from your posts that it’s not taken away your spark. Xxx
Dear Alice, I had no idea, but then why would I
Its such a hard condition and I think im just coming out of that acute stage. Its soo good to hear from people who are living with it, and really living..if that makes sense. 
xxx
Beautiful post honey. I’m so sorry to hear you have been through so much these last few months. Big big big hugs. I hope the fog eases for you soon. Xxxx
Thanku Polly
)) Im glad I wrote it, even though it was hard, everybody has been sooo amazingly kind. your big hugs are most appreciated ! XXXX
What a post lovely, I know this has taken so much for you to write, I know how you have hidden your illness but you must always share your fears and pains with us your friends, we LOVE you, I don’t know why in my head but I feel as close to you as my sister or family, you are a beautiful woman on the inside and out and I know thankfully you have an amazing support in big J and your babies.
I wish I had a magic wand so I could make that fog and pain leave you, fog is hard, so very hard.
You are still there though and your natural gifts are there for you to embrace on the days you feel you can.
I really feel you should talk to my lovely friend Anna @mammadolcevita on twitter, she has suffered with the same illness since she was 15, she like you is an amazing person.
Always here for you x
Lovely K, Its funny i think sometimes you meet people and make strong lasting connections with them. it doesn’t matter whether you meet them at work or on a bus! ( or though the lovely web
) Friendship is friendship and im so glad i found you Xxxx
you make even the most desperate things seem funny…..i can just see the inferior duracell bunny grinding to a halt….that is not you though, even through this grey fog you are still a shining beacon of beauty, lightness, warmth, smiles & talent, such talent. stop beating yourself up that ur not at the front of the marathon, sometimes it is good for the body, mind and the soul to be the tortoise…this is something i have had to learn. Sometimes you just have to be. You have a wonderful family and incredible support, this time that support is for you rather than you being the one supporting everyone else. I know its difficult to take it when it is offered but sometimes you have to. People like to repay the kindness and care that you have shown them over the years. Take time to heal, dont rush, it will happen. Just enjoy the new ride your on and see what magical places it will take you. You know where i am if u ever need to offload. dont bottle it, share it. there is something to be said for that old adage ‘a problem shared is a problem halved’
take care honey and take it slow xxxxx
you made me cry! but in a good way. Ive been so grateful for your friendship over the years ( i know right? years! ?) and I know (strangely) we have been through a lot together. I love you and really appreciate your words, you know me too well, but I am trying to ask for help more
xxx
Helen, this is a beautifully written post which so articulately describes CFS/ME. I was diagnosed with it 7yrs ago now, during my first year of teaching, after contracting glandular fever. It is scary that you can go from being so busy and energetic to barely able to walk, wash your hair etc. I remember those early days well and how incredibly hard they were. Things for me did get easier and I eventually managed to return to work, although part time, and things became more manageable again. I think one of the hardest things is to really be ‘sensible’, know your limits and pace things as much as you can. As you very rightly said- it makes you realise which things are important.
I hope things improve for you, and that you are being given as much support as you need. I am always here if you have any questions or just want to talk to someone who understands. Big hug and I am thinking of you Becky x x
Oh Becky Im so sorry, only just found your comment. Its lovely to know someone else who has come out the other side of this awful thing. Thank you so so much for your advice, seems like its just a new world that i am just learning to get used too, been better the last few days, fingers crossed it continues, for us both
xxx
Oh sweetie. I read this the other day but wanted to wait until I was on the PC to comment so I could really take the time to say this properly. I read this post with tears in my eyes for you. We have tweeted for quite some time now, and I have been aware of your difficulties this year, although I did not know quite the extent to which you had been suffering. I also found that your words spoke so directly to me – and summed up perfectly how I have felt at times in the last six months. I am also awaiting investigation into a potential CFS diagnosis, although I have not felt the level of physical pain that you have, but I certainly recognise that feeling of living in fog and of words disappearing from your head.It is such a frustrating time.
But you, my friend, have always seemed such a little ray of sunshine to me – brightening my day whenever you appear. And do you know what – strong rays of sunshine can be seen through the fog. I still see you, your beauty, and the beauty you see in life. You make me look at the world in a different way – inspired and filled with wonder. Nothing can take that away from you.
Always here for you if you need ANYTHING.
Much love,
Heather
Heather, you have made me cry, big fat tears too ! But thanku so so much I honestly think that’s the kindest thing anyone has ever said about me. Thanku thanku dear friend, and I really hope you get your answers and sunshine too. Love and billions of hugs xxxxxxx