Friday, October 24, 2008

Completely hacked off.

Have spent all day wanting to down pills and sleep but Belle needs looking after so feel like screaming instead. Hubby has come home from work early to take over from me so I can crawl under my duvet. This is the second time this week he has had to come home early and I'm really not sure how he feels about all of this anymore.

I've been making some small changes to see if I can get any relief from the pain but as of yet nothing seems to be working. I hate taking the pills as I feel like a zombie on them but without them my speech and mobility are non existent.

A friend of mine is not well at the moment. She has low energy and needs lots of iron to get her back on track. I feel so jealous of her as I know that very soon she will be back to normal whilst I have to live in this shell that refuses to function. Don't get me wrong I hate seeing anyone feel ill...and I can't wait for her to be back at work and happy again...just wish it was me as well.

Yesterday I actually got dressed and put a load in the washing machine. Played with Belle and Tina popped round for a chat. Hubby came home and commented that I must be feeling better...then he ducked as I threw a toy at him! Its my kids I feel the most sorry for. My fifteen year old son is one of my carers and does a lot more than most boys of his age. Belle gets upset when I can't play or cuddle her and that breaks my heart.

Belle tends to get up very early in the morning so whenever anyone comments that I look tired they automatically put it down to Belle....I wish!

I also heard this week that someone in my little crafty world has been commenting on my illness. She cannot understand why I have to go to bed with it and has been questioning a mutual friend. Well read on....

Fibromyalgia affects us in different ways...for me its...chronic widespread pain, Migraine, Irritable Bowel Syndrome, Irritable bladder, hot flushes, muscle spasms, heavy frequent periods, speech problems, short term and long term memory loss, weakness in limbs, eye sight problems, ME (fatigue), sleep disturbance, diminished attention span,depression, anxiety, the inability to multi task and twitching....( I also have a deterioration on the left hand side of my brain that was discovered in April when I had my MRI to see if I had MS)....so if I want to go to bed then I flipping will!

Can you tell I'm hacked off? Its hard enough being a mum and trying to get through each day without stupid bloody comments off other people. Don't get me wrong I don't want sympathy or pity (God I hate it when I'm out and people take one look at me shuffling along with my stick and BANG...there is pity in their eyes...drives me nuts.) but I don't question other peoples lives so why the heck is it ok for them to judge me or anyone else in my situation?

So for anyone out there that thinks us Fibromites are attention seeking (oh yes another blogger has accused me of that as well!) for sympathy...we're not...just some understanding for something that we have to come to terms with....every bloody day.

I'm not going to apologise for ranting because I think most of you know me by now and I'm sure you won't mind if I stomp my feet once in a while. So if I'm not around for a while I'm not going to feel guilty anymore. Hopefully once the cold weather is over and Belle is at nursery I may get some sanity back.
Em.x

42 comments:

LINANNA DESIGNS said...

My dear Emma i am sorry your are feeling so poorly at the moment, you are so right, if you feel like getting under the duvet then you are more than entitled to, sod what anyone else says or thinks! you have to put up with so much, and i know you do it without complaining. I think for anyone who hasn't experienced this condition or know anything about it, its impossible to understand what you have to put up with every day of your life. I have several friends who suffer from ME and that is a terrible condition and you have more than that to contend with, it doesn't seem fair. I feel for you huney, not pity just feel for you. You get as much rest as you need and you take care of you!!!!! Big hugs my friend, as i feel you need them right now. Love Linda x

katy said...

Hi there Emma, a HUMONGUS hug coming right at you, i had no idea the extent of your illness and i know you said in this post you dont want sympathy but i really do feel for you love. I dont understand some people, why they have to be so horrible, and if it's ignorance what causes it then maybe, i hope, they will feel ashamed after reading this. You take it easy wont you? I wanted to say thank you for the lovely comment on my blog earlier and if you would like some santas helpers let me know, i have added an email ad to my blog now. Have a restful weekend and hope things become much better soon xx

Sarah C said...

Oh Emma, I'm feeling so mad at these awful, thoughtless and stupid people that feel they have the right to judge, critiscise and generally open their mouths. Aargh They should learn to 'judge not, lest you be judged'.

I'm sending so many hugs to you right now. You'll have to share the tissues I'm afraid as I have a couple of tears in my eyes.

You rest whenever you want to as only you know how you are at any given time. Also, it's understandable to feel how you do about your friend. I don't think any of us can honestly say we've never looked at someone and wished that were us. I'm sure your family understand. Your son sounds like an absoplute star and when you can, give him a hug from me for all the help he gives you. Also, a hug for your daughter.

BTW, I came here to tell you I have something for you on my blog, but that pales into insignificance against this.

Sending more love than you probably have room for XOXOXOXOXO

NGCARDS said...

Oooomph that was a right big whinge, good on you!! lol It's always good to get thinkgs off your chest in one big go once in a while! Cant believe the cheek of them two people, shows how narrow minded some people can be!
Big hugs, hope you start perking up a bit more soon, we need to see some crafty creations :) xxx

bubblegum said...

You rant away Emma - you have every right to to and as for others saying you are just looking for smypathy - please don't listen to them. :) :)
There are always people ready to put others down for any reason.!
I do feel sorry for you and you have my sympathy - because you are a very sweet mother and obviously loving mother and wife.
I do admire your inner strength and if you are tired and need to rest - then go ahead - take all the rest you can. :) :)
I think people can be shallow minded - if they have never suffered anything dibilitating then they just don't understand.

You take care of yourself

{{hugs}} Debbiexxxxxx

Alison said...

You rant on Honey I know exactly what you are going through as I live with someone who has it! Some days I can't even give my DH a cuddle because he is so sore. MY darling hubby can't remember our wedding day. He also walks with a stick too so I know what you mean about the pity it makes me mad too. These people have no idea what it is like to live with such a condition never mind the side affect that the medication brings. You've got my email if you need me or want a rant. Please take care Emma, gentle hugs honey.

Emma said...

Hi Emma,
I know we don't know each other but I often look at yor blog....I say sod em all...you do what you need and have to do.
I have just been diagnosed with chronic fatigue and am finding that bad enough, you have that and more.
People just don't understand.
Take good care of yourself.
Love Emma x

Terrie B x said...

Oh `Emma` I totally feel for you here!!!
Obviously the persons in question have no idea ....and are not really genuine friends then are they..
Hey you let your steam off I say...
and why should you be answerable to anyone!!!!
They could never begin to understand if they are not suffering from it ...
Sending Sincerest *big* wishes your way and hoping you feel a little bit bettter soon!!!!
You get under that duvet and take plenty of rest...:)~X~

Pauline C said...

Oh hun ... so sorry you are feeling like this. I so hope that you will feel a bit better (however temporarily) when you've got some rest ... I can't really imagine your situation, but you let your feelings out. I'm sure if anyone has asked quesitons about your condition they haven't been meaning to be unkind .. people's understanding and way of dealing with things is just different. My mum is seriously ill and even her surgeon doesn't really understand what she has to put up with ... I don't think anyone can if they don't have to go through it.

You take care.
Hugs
Pauline x

Jennifer Rose said...

This is your blog, you should not apologise for ranting! This isn't ranting anyway. Just trying to give people a better idea of what happens during your day.

"I also have a deterioration on the left hand side of my brain that was discovered in April when I had my MRI to see if I had MS"

did they have any idea what caused that?

I would have a few choice curse words for anyone that thought I was attention seeking or faking. If I wanted attention I would just flash people my boobs for *ucks sakes :p

Hubby is afraid that if I need to get a cane that I will hit people in the head when they look at me funny :p

CraftyC said...

Hello Emma,
Sorry to hear your down in the dumps, hope your feeling a little better very soon and you know you have loads of blogging buddies here if you need us!
Clairexx

Macpurp said...

hugs.

talk to you face to face soon xx

Sammi said...

Oh hun! *BIGHUGS* but they are soft fairy hugs so they won't hurt!!
I think that you are incredible what you can and do do!!
Love ya!!
Sammi
xxx

Oma said...

I have a friend with fibromyealgia and she had days when she found it very hard to function normally. The person who criticized you should spend a day in your shoes on one of your worst days and maybe then she would be a little more sympathetic.
The worst thing about this disease, is that it is very difficult to diagnose. It took my friend's doctors 4 years to finally figure out what was wrong with her. She never let it get her down and even on her worst days, she would have a smile for you. There were days when she would ask me not to give her a hug as it hurt too much.
So, pooh to this "friend" (and I use the term loosely) you do what you have to do and the h*ll with what others think about it! Gentle hugs and I hope you feel much better soon.

Ruth - Crafty Wanderings said...

Hey Emma - you rant all you want sweetie.

Have emailed you with the other things I want to say!

Love and hugs - Ruth xx

nessy said...

hey girl if you feel like hitting the pillow you do it ~ yes both to sleep and to hit it ~what sort of friends are these any way!!?? my husband suffers with ME ~ and he always wakes with pain ~so i can sort of understand what you are going through ~people are so horrid!!! beleive me i`ve had many upsetting comments and looks over the last 11 years ~with aarons behaviour ~ people do not understand what other lives are about!!
take care emma,biggest hugs, vanessa xx

MeandLilG said...

Right hun. Sit up and pay attention... Stuff em all!! That's what I say. Life is a struggle for most of us, and for you it's made a whole lot harder cos your body's having a strop. But what the bl**dy h*ll does that have to do with anyone else, may I ask?
You know who your friends are - we are the ones that always here and supportive and don't expect anything more than you can give. As for the rest, well they're not friends and are SO not worth your energy.
I for one don't pity you - I think you're incredible. I think the way to deal with all this - and the crap that others have chucked at you lately - is inspiring. Puts my little catastrophes into perspective!
So chin(s) up, chick!! You have a great family around you and so many true friends; *raspberry* to the rest.
Hugs xxxxxx

Trace Dee said...

Hi Emma im sorry you are feeling poorly. Its nobodies business but yours what you do. (sod them they're not very good friends if they are talking about you behind your back) take care of yourself on these nasty cold and dark days, if you feel up to it do a little if not stay under the duvet where its nice and warm.

Thank you so much for your lovely comments on my blog. (by the way it's 3.30 in the afternoon i have been busy all day, its cold and raining outside so i have put my pj's on and i'm writting this from under the duvet where its lovely and warm. (and i have no excusses))

Love

Tracey

Tracey said...

Hi Emma,

so sorry to hear you are so unwell, you have every right to feel hacked off and people should keep their rotten opinions to themselves. If you want to go to bed, you go to bed girl.. sod um all. I've been feeling very sorry for myself this week but having read what you have to go through day to day I feel lucky to have good health, at least it helps me get through the rest.
take care Em,
Hugs Tracey x

Sharon said...

Goodness Emma I can't believe that someone you know has questioned your illness. I agree with you and the above poster, if you need to have a rest/climb under the duvet then so you should and without having to justify it to anyone.
Although I don't have any experience of Fibromyalgia or know anyone with it I really feel for you.
Take care, sending you lots of hugs.
(((((XXXXX)))))

Sharon said...

OMG Em, I've never seen you so annoyed. How dare anyone feel entitled to comment on anyone elses life or question what you have to get relief from this terrible illness. I'm sending you my biggest hug (((xx))) & please remember there are so many more of us out here who care about you.

((((hugs))))

Sharon Xxx

Joana said...

(((((((HUG))))
Emma sorry to hear you not feeling to good . what a wonderful boy you have there .
you are a superwoman , is not easy at all bringing kids up when you are full of health ,never mind having everything else on your shoulders , you deserve getting under duvet for a charge up , stuff the one who thinks differently .


hugs
Joana

P.s hope you are having a good weekend :)

Supermum said...

Um...hacked off....no.....I think you've kept it well hidden. lol!!
Bless ya...take no notice...if you wanna got to bed...you go chick. I think you are very upbeat considering what you live with and you obviously have a very supportive family!
Take care and look after yourself.
Sue. x

Deb said...

Emma this brought tears to my eyes! I sooo know how you feel, the part about your daughter really got to me because that's what bugs me the most too! I have had the same issues and have ignored them. I am so glad to see you take a stand for yourself!! Whoever thinks this is a picnic better hope it never happens to them because it's far from it! I hope you get some rest and feel better soon!! Do you mind telling me what you take for your fibro? I take a lot of pills, but none of them help that much! I couldn't take the lyrica, it made me feel like a stumbling drunk and I thought I was going blind!!

Not too long ago, my hair started falling out in addition to the other things that you stated and I have to say, it's been more difficult to cope with this than I would imagine. I asked the doctor why they always ask me if I have a cough or if my hair is falling out, he said they ask because of Lupus. For months I've been saying yes and they still haven't done any tests. I go to my regular doctor Monday and I'm going to ask him about it!

Don't let ignorant people get you further down!! Even my doctors must think I'm crazy since I have to see a psychologist! She is very nice though!!

I hope your husband is there for you and understands. Mine usually is pretty awesome, but the money problems are starting to get to him I think and it's been more difficult. I would go back to work, but I know I'd just get fired. I couldn't get to sleep until 5:30 this morning, then woke up at 6:30. I laid there until I finally fell asleep and had to get up at 10:00 because my DH had to leave.

If you ever need someone to talk to I'm here!!

Big Hugs!!!!!!!!!

Donna said...

You go girl, i can't believe anybody would question your illness or how often you are going to bed, its ridiculous. Why should you explain yourself to anybody? Your friends are the people who care and listen, the rest aren't worth getting yourself annoyed over. Get under that duvet and get all the rest you need, your family love you for who you are and you have a lot of good friends who think the world of you. Big Hugs to you. Donna x

Belinda said...

Hi Emma
Can I just say that those people that make judgements on others based on their own prejudices really should learn the art of empathy. Quite the opposite to pity, I who have been complaining and feeling sorry for myself due to a bad cold this weekend, have read your post and feel very grateful for my health, that will improve for sure in the next few days. It's about caring and feeling for others who do not have their health. You come across as a brave and strong person and that will see you through, ignore these ignorant people, don't get angry, use your energy to get well.
When you are feeling better I have tagged you!
Belinda xxx

Emma said...

Hi Emma, sending you get well wishes...hope you are feeling better.
Emma x

ScrappyPam said...

I'm not sure why people feel the need to comment about something that's none of their concern. But flip them. Hugs to you!

Rosietoes said...

Emma dear never feel that you have to explain yourself to a living soul. No one can begin to understand the total frustration and helplessness that accompanies Fibro. The pain is indescribable and does not respond to medication. The fatigue is profound and affects everything you try to do. I know - I have it as well.
You can feel sort of OK in the morning and totally wrecked by the afternoon, you never, ever have a proper night's rest and just trying to get through a day can be a mammoth task.
I have been accused of attention seeking behaviour, hypochodria, of being neurotic etc etc.
I would like to see some of these people coping with this condition for a few days and then ask them if they think I am putting it on.
I hope you take comfort from knowing that you are not on your own when it comes to this horrible condition and I am sending you as many gentle 'hugs' as you can bear. Chin up! :)

rattytatty@fsmail.net said...

Hi Emma

Having suffered from ME which is very similar to Fibromyalgia. I had very similar symptoms to yours And was rushed into hospital 3 times.
Don't feel guilty about having to rest. The best way of dealing with these illnesses is to work within your limits and if your bodys telling you its time t take a break then you really really should.
Hope that you feel better soon.
I will be thinking about you
Have a hot bath. cuddle up in a blankie and give you and your body a break. Take care

kerry said...

Hi Emma, I won't ask if you're feeling ok but I will say rant & stomp as much as you want!!
I can't believe some folks that think they have the right to question & judge others, but you usually find if anyone does the same to them....well they don't tend to like it.
Sending you huge hugs,
Kerry xxx

p.s re your comments on my last card (thank you) I've popped a lil freebie on my blog lol...

Cathy said...

Aww Em, have a huge hug. Heck there are days when I want to crawl back under the duvet, and I don't have anywhere near as much as you to live with.
I just wish people would let us all be ourselves, good days and bad days, and if people can't understand/empathise with your life and condition, then quite frankly I don't want to know them ... but I want to give a big hug.
Lots of hugs and love,
Cathy xx

Kath said...

Listen lovely lady...if you want to have a rant....you have every right....ignore what others say...I know that's not always easy...but you have to do what's right for you so cuddle up under that duvet and sod them,
Hugs
kath
xxxxx

maddy hill said...

Hi Emma x you go to bed girl if you feel like it ! Im having tests at the moment and ive figured out that if i dont do certain things every day - at the moment its washing my hair and drying it which completely drains me , then i can have some crafting which in turns helps my memory .. ive been having a good few days so far - i look a mess mind lol

my daughter is complaining how messy the house is - so she has agreed to help me - very odd !
you keep on doing whats right for you , i can understand your frustration , i never know how i am gonna feel the next day ,...
little by little x
keep smiling eh ?
love maddy

kim-paperbabe said...

Hi Em sweetie, can't imagine how you get through a day I moan just being a mum sometimes!
So you rant!!!
Have to say I don't really know much about Fibromyalgia and I wouldn't wish it on anyone!
Sending BiG Happy HuGs and wishes your way and hoping you feel a little bit bettter soon,
You get under that duvet and take plenty of rest!!!

Joy said...

Hi Emma you have every right to be hacked off, people should not make flippant comments about illness they do not understand. I also have a friend who suffers with fibromyealgia it's a horrible condition. You take as much rest as you need and wht a wonderul son you have, Sending you both great big squishy hugs xxx

Michele said...

Hi Emma, Sorry to hear you haven't been well. I hope you are feeling better. I have an award for you on my blog.
Take care
Michele xx

Just call me G said...

WoW! 37 replies and all of them rooting and a tooting for you... does that not say something??

I can not add anything to those lovely lovely posts that hasnt been already said... apart from ...

YAY!!! you found out that someone didnt deserve your time or already depleted energy... maybe those people who 'doubt/are ignorant' might after reading your rant and the lovely comments left here, understand a bit more about how your life is affected by something you have no control over. If they decide they still 'doubt/live in ignorance' then it is them that deserves pity in a way.... and I so hope they are not parents, it scares me at times to think how youngsters have such negative influences around them... anyway thats another rant of mine..

Keep safe angel, I recommend two quilts for when you need to go hibernate.. does me the world of good.. and warmth is healing..

Love

Gxxx

Anonymous said...

Hi Emma,

Just stumbled across your blog and would like to extend my sympathy to you. My wife suffers from Fibro so I have an idea what you are going through. It really upsets me when she is at her worst, it just breaks my heart that I cannot take her pain away.

Have you tried a TENS machine or the 'pain gone' pen? It doesn't make you pain-free but it helps a little. Anti-depressants will really help the low mood too. My wife couldn't see she was 'down' but I mentioned it to the doctor and he prescribed some. It doesn't help the pain but she is now her usual cheery self again (most of the time).

Hope this helps Emma and keep your chin up!

KAT said...

My heart goes out to you! My SIL who is my favorite person in the entire world has this illness as well as many others. It's a shame that people don't want to take a moment to try to understand the impact that a disease like this has on a persons life. My SIL lives with the motto - you can live your life or you can live the disease - she tries to get the most she can from each moment - especially on the good days. Enjoy your good days and thanks for sharing your ART!!!

Ermz said...

Hi Emma. I'm a danish woman who also have fibromyalgi and almost the same symptoms as you.
I have three kids, aged 13, 10 and 8 and its been tuff raising them and being sick at the same time. I understand completly how you feel and how hard it some times is to keep going on.
You are welcome to write me back if you like.
Hugs ' Keep up the spirit..
Rikke, Denmark.

Inspiration Alley said...

Emma I hope that you're feeling a bit better by the time you read this. It's so difficult for others to understand when you have an invisible illness or disability, but living with a husband and son who have conditions which have similar symptoms to those that you are experiencing I can fully understand how you feel. That said, I can never understand why others feel the need to say such hurtful things rather than just keeping quiet.