About me Daily Life Memories Sleep Deprived Tough Times Worries: chronic fatigue deepest darkest fears exhaustion fatigue fibromyalgia illness more pain Motherhood not fair pain recovery relapsing remission Sleep is for the Weak Tough Times
by Josie
33 comments
Fear
I am blogging this morning in a desperate attempt to stay awake.
Kai is busy doing things that Kai bear’s do: hiding things in various places to be retrieved later, pushing things round in his beloved new fire engine. He has a small plastic duck in his mouth and my cardigan wrapped around his neck. So normal day for him.
I, however, am not feeling quite so breezy. I keep falling asleep, my limbs feel like lead, I am dizzy and wobbly on my feet. And I am scared, very, very scared.
I don’t think this is low iron, or lack of sleep, or over-exertion. I think this is my FUCKING Fibromyalgia (and yes people with sensitive ears I WILL swear), and the thought of that taking a hold again makes my stomach lurch and my skin go cold in a way I can’t possibly make you understand. The doctor won’t see me till Friday but I know that’s what she’ll say. The pain levels are ok, but this overwhelming fatigue is how it starts. I have been here many, many times. Hopefully this will be a bad couple of weeks, maybe a month and then it will lift. But last time it was years. I thought I had beaten it, I really had.
I cannot go back to being ill again. I can’t. I am grabbing you by the virtual lapels right now and shaking you because you have to listen here. I cannot be that person again.
For six years I was a pale, floppy can’t-do shadow, managing to walk to the end of the road and back on a good day. I won’t tell you about the bad days. My life revolved around wheelchairs, and overwhelming pain that makes labour look like a walk in the park, pacing, and positive thinking and TAKING IT FUCKING EASY.
I don’t want to take it easy. I want to be alive and not a ghost person. I want to DO and get to be the person that I AM – full of energy and enthusiasm, and not some miserable, pathetic not-Josie.
And the real bitch is that everything was going so well. I was feeling happy and settled, I was FINALLY getting going with life and doing things that felt right and that were taking off. I wasn’t depressed or anxious or all the other things that no doubt my doctor and everyone else will assume is respsonsible for the relapse. I was doing great, I really, really was.
It.is.not.fair.
I don’t care if I sound petulant and whiney. I know it could be a lot worse. This illness won’t kill me but my god it kills my life. It kills my plans, my ambition, my potential. And it has done this over and over again my whole life.
I will not let it do it to me again.
I will not put my life on hold again.
You hear me?
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I’m so sorry hun, being less able to do things must be a nightmare – especially with a young son. I’m sure you’ve tried everything so no advice from me, but I do know how you feel (I have Charcot-Marie-Tooth) and I’m sending hugs, hope the net helps you stay sane.
tattooed_mummy´s last blog ..OK Just a quickie 
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I hear you, loud and clear. I don’t know the illness (but will Google it now), but it sounds awful. Your sense of humour is bound to help, Kai will help, your friends will help. But as I know nothing about it I’m not going to pretend all will be well. BUT you know how to deal with it, hopefully it will be a matter of weeks, and it might even just be the start of winter and feeling run down? Strange kind of silver lining, but you never know.
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Oh Josie…wishing you luck and strength. I’m sorry you’re struggling. Keep us posted and know Little Miss and I are pulling for you!
Karin
Cafe Bebe´s last blog ..1 Pack, 1 Vaccine
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Ah, hon, that’s crap, it really is. And I can’t believe you can’t get a same-day doctor’s appointment, that’s so stupid.
Here’s hoping for the best for you when you see the doc.
x
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Sending lots of hugs and best wishes and, if thoughts and willpower were sufficient, fighting with you all the way.
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I do hope it is just the start of the winter blahs and nothing more serious. Feel free to shake us by the lapels as much as you want if it makes it a bleh and nothing more serious. x
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Oh Josie, I am so sorry about the way you are feeling. I do not suffer from a chronic condition, but have suffered healthwise over the last year, so thought I would offer a little unsolicited advise (I hope it doesnt offend), firstly the things that have helpped me. Positive thought cards (for those really black days), SpaTone Iron Water (2 sachets everyday), Eating well and often (MadDad leaves me little fruit salads and bags of nuts), A walk in the sun even if I am not feeling up to it, hot chocolate, family cuddles and focusing on what I can do rather than what I cant.
No get on the phone to your GP and get them to bring the appointment forward, you deserve to be seen before Friday.
Sending virtual hugs and take care
TheMadHouse´s last blog ..Childhood innocence lost or a mum behind the times
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I hear you J. Please try to stay positive and gve the Dr what-for if she tries to fob you off. x
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So sorry to hear you’re feeling like this. I don’t have any helpful advice so can only say I’m sending positive vibes your way. You sound like you have the mental strength and determination to deal with this and I’m sure you will. Thinking of you x
Emily O´s last blog ..Blogging again and stuff I’m not thinking about
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Big hugs!!! Can’t really add too much more than already said, except to say that although I only know you “virtually” I know you are a lovely and generous person who makes me laugh! and if you ever want a virtual hide under the slanket with a big bar of chocolate, tweet me, i am your girl!
And ,i agree with everyone… kick docs arrogant arse and make a fuss you need to be seen now:) xxx
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I hear you, and I understand the panic, on a smaller scale. I felt worn out, dead on my feet, a couple of days ago, and after going to bed at 3pm and not getting up again I really believed that M.E. was back to bite me in the arse.
It’s been two days, and I’m fine. But always when I feel like that I feel like you are doing now. Memories of months of being in bed while my children played with someone else…
It might just be a blip. We need to always think this way. We’re well, we’re well, and it’s probably just a blip.
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Oh Josie, I hope it’s not the fibro rearing it’s ugly head again. You’ll get through this, whatever it is. We’re all here for you; online at least if not in person!! xxx
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Oh God, I know how you feel. I do. Keep fighting it with all the strength that you can muster, and get the bloody quacks to do something. It’s taken me a private appt in London (at not inconsiderable expense!) to finally get the right medication. Believe me, it was worth every single penny and a whole lot more.
Tim´s last blog ..Giving it away…
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Hey, swear all you want. It fucking sucks feeling ill and there’s no shame in saying that. I do hope the doctor is able to help you figure out a plan to minimise the pain this time. I’m here if you need anything (an ear, a Snuggie, an inappropriate limerick, etc..) so just holler. Big hugs. xx
Noble Savage´s last blog ..Why the sexualisation of girls hurts boys, too
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I have crohns so I know what it’s like to be the shadow, the person on the outside while everyone lives their life. There is nothing I can say that will stop the illness taking hold but try and stay strong and remember that it is a phase, and hopefully a short one.
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This post was mentioned on Twitter by porridgebrain: I am so scared today. I can’t go through this again 
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I’m sending every little bit of positivity I can muster to you.
You can get through this and be everything you want to be.
(((Hugs)))
x
Insomniac Mummy´s last blog ..Good Intentions – A Journey Through Breastfeeding
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I am so sorry. I know there are not enough words to provide comfort but know I am thinking of you right now.
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Oh josie! You beat it before, you will again! Stay positive honey, I’m thinking about you xx
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Oh, Josie. Your energy on this internetty-web of ours has been magnificent and so very much appreciated. From a selfish point of view, I don’t want to see that diminished even one iota.
From your point of view, I can only imagine… Thank you for sharing with us. We’re all thinking of you and hoping it ain’t so.
x
The NDM´s last blog ..The Mighty Worrier
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I hear you. Do try not to send yourself mad with worry. How frustrating the doctor cannot see you until Friday, that’s really quite dreadful when you obviously need to see someone. Hang in there. All your blogettes and twitterettes are here to support you, shout if you need us.
Rosie Scribble´s last blog ..Food wars
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I can only imagine the stress you must be under right now. Huge hugs and oodles of smiles and positivity are being sent your way! =)
Spongebob for President´s last blog ..Random introductory facts
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Josie, Keep strong, keep positive. You will get through this and I am sending all my good vibes your way. Sometimes the universe just has a way of testing us.
Now go and insist that you need a doctors appointment. FGS if this isnt one of those doctors emergencies, I don’t know what is…
zooarchaeologist´s last blog ..Wordless Wednesday; Its hard being the smallest
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I don’t think that you sound petulant and whiny at ALL. I think that what you are feeling is a perfectly reasonable reaction to something that is simply not fair.
I’m sending all the good thoughts I can muster to you. I hope that they wrap you up and hold you like a big, comforting slanket. Be well.
Amber´s last blog ..Never Again
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That’s horrid. Friends of mine suffer from Lupus (she) and ME (him) and go through long dreary cycles of this. Swearing is completely in context. But you will cope, you really will. Though you may swear a lot.
Dad Who Writes´s last blog ..Childminder Maternity Leave Disruption Blues
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(De-lurking at last) Good luck at the doctor tomorrow! Hope that they listen and give you all the support you need.
As far as moral support is concerned it looks like you have it in bucketloads from the comments on this post and I’m sending another virtual hug (if that isn’t too creepy from a stranger!) – here’s hoping that all this virtual energy can help you find the strength to beat this again xx
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Stay strong and positive.Thinking of you and family.
Aly
My Hodge Podge Life
Aly´s last blog ..Fun Friday- Stewie (Lois mom mum mummy)
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Oh man, I should have read this one first (as opposed to the next entry). I have a much better appreciation now of what great news it is that you DON’T have a relapse. I know how much illness can screw with your life, so I hope it stays the hell out of yours.
Michael´s last blog ..One decade on…
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thankfully i read your later post first so i’m hopin your fears are allayed. poor you, it sounds absolutely awful. i know – as do many of us who read you – that just havig kids and writing is enough to keep us on the edge of exhausted while we deal with the rest of our daily lives – so to add in any form of illness or mental anguish (in your case this terrible thig, in mine, multiple miscarriges one after the other) leaves you feeling drained and scared becasue we just don’t know where the reserve is going to come from. so hold on tight, and i hope this is just a blip… your sense of humour sines through…
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Oh, Josie, sweetie, dearest – I hear you. Big hugs!
Mwa´s last blog ..Tourist in my own country
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Hi Josie,
I was recently introduced to your blog by a friend. I have M.E. and am suffering through a particularly bad relapse myself. I also discovered last week that I’m pregnant.
Living through the fatigue is almost not living at all. I really hope (in both our cases) that the fatigue passes soon. People don’t always realise how much of your soul the tiredness consumes.
Sending you hugs!!!!
Sam´s last blog ..Crashed!
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Josie Reply:
November 17th, 2009 at 10:43 am
@Sam, Hi Sam! So nice to ‘meet’ you! I’m sorry you’re having a bad time of things at the moment – but HUGE congratulations on the pregnancy. I actually found I got a lot better when I was pregnant – I’m not saying you’ll find the same but you never know! In any case, I really hope this rough patch passes soon xx
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Josie Reply:
November 17th, 2009 at 10:43 am
@Sam, Hi Sam! So nice to ‘meet’ you! I’m sorry you’re having a bad time of things at the moment – but HUGE congratulations on the pregnancy. I actually found I got a lot better when I was pregnant – I’m not saying you’ll find the same but you never know! In any case, I really hope this rough patch passes soon xx
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