It may only have been a few days or so - but it feels like MONTHS since I last sat to write, whether my own blog, or to respond to anyone else's blog. This constant tiredness and sleeping so much, without being refreshed - has really screwed up my time-line! I never know what year or month it is - let alone what time of day it is. Then there's the head honcho of all that ails myself, and you fellow sufferer's, that jolly old Mr. Fibro! My, what a powerful hold he has eh folks? He's got me so confused and disoriented, I don't know which way is up - let alone my left from my ruddy right! And his vice-like grip that fills us all with such constant pain, the likes of which we've thought we'd never know before diagnosis? When in fact he Brain Fogged us into thinking it's only a short time we've felt such agony - when in fact, it has gone on for many, many years for us older Fibromites. And what's with the yo-yoing bouts of diarrohea and constipation that's now known as IBS - why is he so cruel? I thought with my confusion, it was loose VOWELS not bowels - I now realise Mr. Fibro has been robbing me of my vocabulary and clear thinking speech as well! Why, oh, why, does he want to torture us so badly? What did we ever do to this evil creature? I know, I know! - Oh, no I don't - I forgot - my short term memory is shot! No doubt robbed from us by Mr. Fibro - for some sick, twisted reason that only he will understand.
There's something missing from this scene - hmmm - I can just about recall - ah, yes I know! It's the REAL ME - and I've been missing for YEARS - Will I ever truly find the me that was - EVER again anytime soon? I hope and pray I do - Do YOU miss YOU?
Love to everyone,
Carol xx
19 Replies
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I know how you feel I miss the me I was, some days I can cope, some days I have a major wobble and I cant see any future,the trouble is it take over every aspect of our lives, from thinking, speaking, mobility, sex drive, oh I could go on and on and on, I truely bloody well hate my life now, but some how I know Ive got to adapt, I dont know how, my family are helping , but its hard for them also, I wish I could wave a magic wand and it would all go away
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Hey Lally, Gentle hugs.
Thank your for responding - As you will have guessed, it was written tongue in cheek to make our suffrage less dark and dreary!!
I'm trying my best to "adapt" but this tiredness just will not quit. In bed at night , my head plans as if I'm the old me - and I get all excited about what I'll be doing the next day - Then morning comes and as I move to get out of bed - reality dawns and those happy twosome, Doom and Gloom become my shadows for the day.
I too, hate my life - hah! Some life we're living now eh? My Daughter does understand - but as she is busy with her 10 month old son and her hubby - and no car to pop to see me daily - I live 8 miles - 2 bus rides away - can take upto an hour and half to get here and the SAME going home. - I don't have anyone else - Am seeing my GP next week about involving Social Services and see what I might be lucky enough to be helped with. I'm hoping they will at least look into my request for a transfer back "home" into a smaller flat, nearer my daughter. And I hope the can get me some help in this house too.
As I type, I am yet again, nodding off on my PC. Time for some more zzzz's now. Enjoy your day as best you can Lally.
Love,
Carol xx
Cadee, please try social services, I did and theyve changed my life, in fact they saved my life, \ive got a great social worker \lucy, my daughter had an assessment for being a young carer by some one whose mother has fibro so really understood what we are going through, through themDr Barnardos have placed my daughter on their young carers programme, and they will support me getting dla
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Hey Lally, I will try social services - If I do it through my GP next week, it might help things go faster getting help than if I went direct to the SS myself. You've got a fantastic young lady in your daughter Lally. She's an absolute gem! I have DLA but only low and middle rates - and I can NEVER remember which rate is for which thingummy! <<< Fibro Fog!- I'm going to see if I can at least get higher rate on one - if not both. Right now am barely getting about on a stick- which is not helping the pain in my shoulders. Grrrr! I want a mobility scooter that can go on buses!
Hi cadee, Dito! if i didnt know we are on this site.....
I think we all mirror your words, and you told how it is for us so well.
I think you should copy and past your post and send it anonymosly ofcourse, to the powers that be who decide our 'fate' so they can get even a small grasp of fibro.
Am so glad it made you chuckle - it was my intention to set everyone's day off with a smile - despite our ailments!- I was thinking myself - OMG! I can think - for the moment at least! - Now where was I? - Ah, yes, I was thinking of sending it to someone in the powers that think they be - or maybe someone in the media who was sympathetic to us Fibromites and sufferers of other invisible diseases. I'd send it with my copy of the Letter From Fibromyalgia (My initial blog - I think :-s ) that I found on the net many years ago. Ah! Maybe I could print off copies and post them around my hometown of Cardiff and nearby towns to further our plight/cause? Have free bus pass - Will travel! - (Panic attacks will have to bloody well keep at bay whilst I'm on this mission- am sure my daughter would love to help and my baby Grandson! - Now, if only I could keep awake long enough to get the project off the ground! *Sigh* Damn you Mr. Fibro! Damn you to Hell! Oh, that's where you're from? *GULP!* Of course you are, you evil son of a gun!
Got a bit side tracked there Poppy, sorry - one of my MANY flaws I've been told!
Hi Cadee & every 1 wud u mind if i keep this on my comp 2 show my social worker when she comes 2c me next wk plz hopefuly she might b able 2 understand exactley how Fibro affects us. I tried 2 explain 2 her other day but fibro fog took over & i ended up getting all stressed/upset which made fibro fog worse. Thank u Cadee 4 putting in2 words how we all feel ive tried for yrs 2 explain 2 peeps how my life is Gentle hugs 2 every 1 & big x
Hey loobie, gentle hugs,
I don't mind at all if you keep this. I hope it does help explain to your social worker how Fibro affects sufferers. You might want to show her this as well
I wrote my "moan" humourously as I always seemed so darned miserable whenever I blogged my rants et cetera - I thought this would put a smile on everyone's face knowing we are all in the same boat - and it's our sense of humour that keeps us afloat! - I know that without my sense of humour I'd have given up on life years ago.And the picture was EXACTLY how I felt yesterday - not helped by the fact when I looked in the bathroom mirror - THAT face stared right at me! True story!
Love,
Carol xx
hi cadee
I am so angry with you lol or at least i could be cos you sharing my man....but hey on second thoughts you can keep mr fibro i dont want him he is a womaniser and even gets into men. so yes please kee phim but in the garden shed away from you and all of us loves ya petal
LMAO! Hey Petal, Gentle hugs.
You call that evil son-of-a-gun Mr. Fibro too huh? It's my polite way of say what I really want to call him! I did not steal him from you hun, he attached himself to me and just would not let go - he's been with me over 30 years - GRRRR I feel sorry for anyone whose been affected by his overly, personal handling of us - A shed could never contain him - he's too strong and powerful. Only a true miracle can save us all.
Love,
Carol xx
Cadee you are a laugh plus your post is full or nerve and verve, you have such pazazze, wish I had, did once, was so proud of my strong heart and body, my get up and go, ( which has all but got up and gone), you cheer us all up with your funny piece, and I think you're right I've always said it, the flippin fibro fog/confusion and memory loss is the worst, ever, just wish I could get rid of that completely, and then maybe everything else would'nt be so bad.
Isin't it hard to be strong? I was always naturally in every way so strong, and now I believe I'm going to lose my house probably in the near future, because I can't work with this ( and more) flippin things wrong with me, I find to-day I'm weaker and sorer that most, writing out my budget (what budget!), I realize I'm finding this reall so hard, and I wish the medical services got with it and realized we are sick,, cant' help it and they are making everything so hard for us, I fear I'm not going to always be able to keep strong, it's a dilly.
Anyway enough of that depressing crap, I think I've a fever running today also so that's probably why I'm a bit low, have to try and make myself forget and be happy, thank's for your lovely post it cheered me up, and if you need any signatures on anything just ask, I'm sure everybody would oblige, with that.
Take care and gentle hugs, and tell Mr Fibro he's welcome to stay there and not come back to haunt me, thanks xxxxx
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Hey Claire, Gentle hugs & good morning to you - Thank you so much for your kind words. I've always had a way with words - my daughter does too - but Mr Fibro robbed that from me a good while ago and I'm lucky enough though, to have those words be allowed a visit from time to time - Nothing I will thank Fibro for - I think they snuck back home awhile, whilst the son-of-a-gun was busy collecting another poor victim to join the ranks of Fibromites.
You still have a way with words there somewhere Claire - Mr Fibro has just hidden them away from you hun -
It is very hard to stay strong, yes, I agree whole-heartedly - But then Mr Fibro wins a bit more from us if we do not stay strong doesn't he? I wouldn't want to give him the satisfaction - would you?
Don't give up heart - no matter how bad things get - something will always turn up good from the bad and tough times - trust me I know! I hope & pray you do not lose you home.
As soon as I buy inks for my printer and feel up to setting out letters/petitions - online and out in town etc., I'll post the petition on here and FB also. It won't be anytime soon as I'm waiting on new meds to settle in and have a few personal things to try and sort through- BUT - it will be done eventually.
I'm really glad my blog cheered you up - but I'm afraid Mr Fibro does not listen to - though he hears - anything I tell him - so if he decides to visit/haunt all other Fibromites - I have no say/sway over the control he has - Sorry!
Cadee, you remind me so much of an old friend who suffered with cancer long term and who developed a black humour which had her friends in hysterics. She was a writer by trade before her disease robbed her of her job, so she used to hold court with words in such clever ways that we almost forgot what a plight she was in. She still survives despite everything that has been thrown at her. She literally has no family to rely upon.
I'm glad that you have family moderately nearby and will keep fingers crossed for the change of accommodation that will bring you closer to your daughter. Meanwhile, weep and rant at every agency who might, just might, give you some assistance where you currently live.
Mr Fibro has lots of enemies and I keep hoping that we can kick him in the pants one day and send him packing! I'm an advocate of petitions and uniting for a cause - one voice alone doesn't always achieve much but many voices become a big shout that has to be heard. If enough energy and funds are thrown at fibro, maybe, just maybe, we'll start to regain our old selves and in my case, I can learn to dance properly with my wonderfully romantic partner of 2 years who adores me despite everything and whom I adore without reservation. We're just now planning a trip to Italy in Sept and it's an exciting prospect to be looking forward to our first holiday together (I never EVER thought I'd find my soulmate this late in life!)
Cadee, keep being who you are, foggy or not. Keep in there. Hang on. And come on here for your "rants" or whatever - you're in like-minded company xx
Hey Sammicat, Gentle hugs & good morning to you - Thank you for responding to my blog.
My heart goes out to your friend. To lose your job like that because Mr Fibro stole your words must be a crushing blow in more ways than one. But like her, we are all survivors, despite what's been chucked at us - some more than others agreed. As I said in my above reply - if we lose our strength to go on - to survive, then that vile creature called Fibro will win out!
Until a cure is found we must all rally against the Government, and many in the medical profession who are still in denial that Fibromyalgia IS a real disability and very debilitating to sufferers And we deserve full and proper disability pay as much as others with disabilities - some with lesser ailments than Fibro sufferers. As per above response, once I'm able. Petitions will be sent out online and around and about my neighbours etc.
Am so happy you've found such a good man - your soul mate - late in life - I've quit worrying years ago if I'd meet anyone myself - and accept with the way things are now - I would rather stay without a man in my life and just do want I want to do - how and when I want/am able to do things. Fibro has made me a tad selfish of late methinks!
I can only be who I am and have no intention of changing ME! Fibro is trying his best to do that - but I keep fighting back.
Take care Sammicat,
Love,
Carol xx
Hi Carol,
Thank you for your reply, I only saw it now, and thank you for your kind support and words, and I do hope you start up petitions when you can or someone starts up some fight against the governments stance on fibromyalgia, big time, because believe me if I can I will walk (perhaps with a stick or on someones arm) and protest with them,or sign as many protests about it as possible, don't think I could orchastrate (sp), them myself but I wish I could, something has to be done.
I will try and not be sad or down Carol, I promise, I don't think I've prayed as much as I've done this past year in my lifetime, sometimes I think God is trying to tell me something but what?, my son says maybe God's being cruel to be kind and probably has something special lined up to make the rest of my life a lot easier and happier, well I don't know because I love living her with my 3 children, (grown), and don't know how I could be happier, as far as that is concerned, but maybe he can see things I'm not aware of, maybe he means my illnesses, you never know, I get tired accepting things, first of all I had to accept I was'nt too well, then I had to accept that I was being made medically retired, and accept the hole that left in my heart for a while, then.....a well that's life I'm sure for a lot of us, the rest as they say is history.
Good at words did you say, well funnily enough when I speak orally my words get jumbled a lot and I forget what I'm going to say, as well as forgetting everything else, so I guess it is a little bit easier writing your feelings down, isin't that what we were always told (In secondary school) to write down any bothers you have to get them out of your head, or to deal with them easier, I remember when I was a teenager I loved writing a lot, but my Mam found my writings once and gave out to me for something I said about her, so I did'nt bother after that, and of course you don't have time really once you start working and a family.
Take care Carol, you're great fun, that picture of Mr Fibro was fantastic, you should sell it, it would make a lot of money, love Claire xxxxx
And Carol I see on another post you think maybe you are selfish, be selfish all you want pet, sometimes it's necessary to survive xxx
Hey Claire, gentle hugs.
I used to think that if there was a God, then he would not let me suffer the brutality and evilness at the hands of my father - I call the ogre - and through anything else that should not have happened to me. But when I saw what your son says about God being cruel to be kind etc., even that makes me question why God would make us suffer show to give us a better life lined up to make your life easier and happier in the future. Perhaps a "chosen one" will have a miracle cure for Fibro - if that's the case it'd better happen soon - after 30+ years of Mr Fibro try to bring me to my knees with the pain - and after today he may just do that! - And I want to be able to do all Gramma thing's with my Grandson that it's impossible for me to do now.
It sounds to me, from what you've written about your mother that you had a similar experience with writing something about her as I did when the ogre found damning stuff I'd written about him - he'd snooped high and low in my bedroom (shared with 3 sisters) to find what I'd wrote - and he beat me with his belt until I was close to passing out from the pain - he was like a devil possessed. He'd taken my dignity, my childhood and teen years, almost taken my life on more than one occasion but one thing he NEVER took from me was my sense of humour. Though at the time I thought he had.
I will be sorting out petitions very soon Claire, have ordered inks for my printer - online of course!
That picture is not mine - I found it on the web and it's also, if I remember correctly - on Email stationary.
And you are right of course, about being selfish from time to time - I had my daughter and grandson over the weekend and 1 day is just fine but by the end of their stay I was really flagging and Mr Fibro was starting to make his presence known - after they left at noon yesterday, bless them, I came over very out of sorts and suddenly passed out - I'd never admit that to her as she'd be swallowed up by guilt - So when next time ske wants to stay an extra night I'm going to actually say NO for the first time. And despite my guilt at doing that I know she'll be fine with it - I hope!
Well, sleepiness is creeping over me so I'll leave it there. Please take real good care of yourself Claire.
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x
I feel sorry for anyone whose been affected by his overly, personal handling of us - A shed could never contain him - he's too strong and powerful. Only a true miracle can save us all. 
I spend more time on here than i do on FB !! every moment i have
Well, I never knew that!!! Did you??
"Well you don't look unwell!!!"
The eyes see but the brain does not react!!!!!
i am so scared of everything......
