I'm Kind of thinking that I better head to bed soon as I will need to be up at for dad coming up to visit. I sit with my BIG headphones on listening to music and pondering what I can include in this entry which will undoubtedly be the last of the night. I think I made some progress today but in what I don't know. Realising I do deserve to be happy? That some people are interested in my opinions and what I have to say? That I am a strong resilient woman or that I an do things when I put my mind to it because to me doing this blog is a HUGE commitment it's scary and I'm not going to want to do it all the time but I need to for myself as well as others.
As creative as I am or sometimes wish I was because that's who I feel like on the inside. Writing doesn't come easy to me. I wish it did because I could be an author which work be awesome. I have loads of ideas for books in my head but don't know how to put the words down that's why I couldn't keep a full diary before and why I was a crap pen pal. People ask me so what's being happening and my reply is nothing much I would love to be one of those people who could turn little mundane daily things into an epic tale of adventure. Thinking tomorrow I may also start a favourite song lyric blog as well because I need somewhere to put them
So when do I start believing in myself. When will I believe I'm OK at writing I don't think I'll ever be exceptional some people's stuff you read just flows has the right words in the right places, what are mine - demented ramblings of a crazy person. Why don't I go for thing in life - because I don't see the point in wasting the precious time I have on things that there is a million people better at it than me, so I would never get a second look. I am OK at some things, I can't think of anything I'm particularly good at and there is nothing I am exceptional at. I am quite smart and the one good thing I had that was good was my memory but now it is going too. My long term memory is still rather good but I fear what will happen if I start losing that to. My memories (however bad they may be) and being able to remember is what makes me who I am. Without them who am I? Am I nobody?
Again Good Night and thanks for listening x
Friday, 6 April 2012
Thursday, 5 April 2012
How do you find the blog?
Hi everyone and Welcome please feel free to read the blog and leave feedback. Seems some people are reading but only a few have left feedback every bit helps so I know how people feel about my writing, the blog, is it helpful?, Is there anything yous would like to know or like me to write about? What are your own experiences? Any advice? Do yous like the style and direction of the blog? Do yous find it interesting, informative, helpful, eye-opening? Any feedback at all xxx
I think anything would help, sometimes the words are right there in my head and just come tumbling out the way that I want them to and that I hope they will. But often I am left struggling for inspiration the words just don't seem to come. Suggestions of topics or discussion points would be really good and helpful and I can write on my experiences (if I have had any) or my opinions on them. I will try to be as honest and blatant as I can about the things asked and help in anyway I can. But I would also like personal opinions "Did the blog speak to you as such?" "Does any of it ring true?" Do you enjoy reading it? If so why?
Any comments and feedback is greatly appreciated and helps me on my way to getting my mind back and helping others do the same.
Thanks for reading xxx
I think anything would help, sometimes the words are right there in my head and just come tumbling out the way that I want them to and that I hope they will. But often I am left struggling for inspiration the words just don't seem to come. Suggestions of topics or discussion points would be really good and helpful and I can write on my experiences (if I have had any) or my opinions on them. I will try to be as honest and blatant as I can about the things asked and help in anyway I can. But I would also like personal opinions "Did the blog speak to you as such?" "Does any of it ring true?" Do you enjoy reading it? If so why?
Any comments and feedback is greatly appreciated and helps me on my way to getting my mind back and helping others do the same.
Thanks for reading xxx
Bleurgh
Feeling Very Very run down and ill again, started feeling far too warm and very very sick. It's like a hot flush and you can feel the energy drain from you. Was a little bit sick and bad stabbing pains in tummy. Hubby asked if I was OK when I came out and I told him not really feeling too good and been a wee bit sick, he thinks it may be a wee bug because there is ones going about and he's been feeling kinda yucky too. So decided I was going to go to my bed have a wee lie down and either wait for it to pass or I fell asleep whatever came first. But my little cherub decided that was not to be and came up and into my room and started pestering me going in about all my stuff which is still all lying about my room because we have just moved house. So just decided to get back up, brought my art folder down and may try some art therapy lol. Not done my art in years in the old house my art folder which is a big black portfolio folder with all my art stuff in it had got put in the "Narnia" cupboard and discovered it again when we were moving. I love my art and I do need to start drawing etc again. I love writing, love writing poetry in fact most arty/creative things but most times when I have a minutes peace to actually do it I'm far too tired and worn out. So Little Miss is in the bad books she needs to learn maybe I'll just stay up when she goes to bed and do some arty stuff. She will be going just soon anyway. I know sometimes it's hard for her me being unwell but she knew I was in bed really unwell and was just being a little pest. Typical 4 year old.
Until the day I die I will KEEP FIGHTING
I was going to add a support my blog button but when I went to set up google merchant account it seems that you need to be an actual business. Oh well that's that idea down the drain.
If anyone wants to donate to me and support my blog feel free to message me for details lol. Any money would go towards a car to help me get out and about lol. Aww well worth a try lol.
Think I would feel guilty taking money off you good people anyway but was going to add the support my blog button so if people wanted to they could seems it is in a lot of blogs. But that's not what my blog is about anyway, at one point I think I will set up a Just Giving Fibro Page as I already have a Hughes Syndrome one and have so far raised £372.94 plus gift aid supplement of £39.43.
Have thought about contacting Noel's Christmas Presents because after everything I have been through I think I deserve something nice. I sure as hell don't deserve all this bad luck and everything that has been flung my way.
But here is the thing I struggle to ask for any kind of help never mind asking for something for nothing, that's not really who I am. Maybe I should be more like that as a lot of people seem to get a lot of help and things to make their lives easier by doing this. But the things I want aren't for me they are for my family unit and more so for my daughter to give her the life she deserves the kind of life I never had. Yeah there are things I want for myself like nice clothes, some new perfume, nice things for my bedroom but in my eyes they are not necessities I would rather get things for my daughter, then my hubby, then the house, then maybe myself but rather than ever getting the things I need for myself I will always put others first and get things for them because at the end of the day what I really want is my health and I can't have that. Seeing other people happy makes me happy. Don't get me wrong I love little gifts just as much as the next person but I like making other people happy.
I feel guilty for taking help that I should be getting never mind anything else and because I don't ever ask for help it gets to me when I do eg at the doctors and you basically just get ignored. I am a very proud person and I wish I could have the energy to cook and clean and be the perfect wife and mother but I can't. Even before I "got ill" I have been plagued all my life with the most horrible depression and anxiety which means sometimes when I am in a very depressive spell yeah I do lack motivation, energy and get up and go. I wish I wasn't like this, but wishing won't change a thing. Nothing will change what happened to me and all the things that continue to happen, things that to an extent have ruined my life ..... Some people have a LOT to answer for. But all of those things are what made me who I am today and all I can do is keep being strong. Who knows if all the things in my life hadn't happened I would be a different person, a stronger person, a happier person .... but one thing I could never be is a braver person. Because only recently have I realised that yes I am in fact one of the most brave, resilient people I know. I may not feel like that at times and at times I don't feel strong and I don't know if I can cope but at those times I will look back on this right here and remind myself that I can do it, I can get through it and with my hubby and daughter by my side I can get through anything this life throws at me because I have hit rock bottom many times and been heartbroken, lost, scared and confused. I have been angry, suicidal and felt alone. I have hurt myself and pushed those close to me away but one thing I have always done with the help of my hubby is manage to claw my way back up and stay strong and keep fighting because I will NOT let these things beat me. I AM stronger than that, I WILL keep fighting and I REFUSE to let these things destroy me. I will smile when I am sad, I will laugh through the tears, I will swallow down my anger to deal with when I am feeling stronger and I WILL NOT LET THIS OR ANYTHING ELSE BEAT ME!!!! I deserve to be happy, I deserve to have an opinion and what I say does matter. I am allowed to speak my mind without worrying about what others will say but not be mean or nasty while doing so. I deserve to walk with my head held high because I have SURVIVED through so much that a lot of others wouldn't have. I have kept on fighting and never gave in, I have been close - I have self harmed and took an overdose in the years before my daughter was born but I will never ever allow myself to give in EVER, because then I have let the things that hurt me win.
I am struggling a bit more with the stairs today, every bit of me from my waist down is in agony - from waist up too but need my bottom half for stairs, It's really P**sing me off but I won't let it beat me and I won't let it define me.
Until the day I die I will KEEP FIGHTING and I will STAY STRONG
Thank You for listening x
If anyone wants to donate to me and support my blog feel free to message me for details lol. Any money would go towards a car to help me get out and about lol. Aww well worth a try lol.
Think I would feel guilty taking money off you good people anyway but was going to add the support my blog button so if people wanted to they could seems it is in a lot of blogs. But that's not what my blog is about anyway, at one point I think I will set up a Just Giving Fibro Page as I already have a Hughes Syndrome one and have so far raised £372.94 plus gift aid supplement of £39.43.
Have thought about contacting Noel's Christmas Presents because after everything I have been through I think I deserve something nice. I sure as hell don't deserve all this bad luck and everything that has been flung my way.
But here is the thing I struggle to ask for any kind of help never mind asking for something for nothing, that's not really who I am. Maybe I should be more like that as a lot of people seem to get a lot of help and things to make their lives easier by doing this. But the things I want aren't for me they are for my family unit and more so for my daughter to give her the life she deserves the kind of life I never had. Yeah there are things I want for myself like nice clothes, some new perfume, nice things for my bedroom but in my eyes they are not necessities I would rather get things for my daughter, then my hubby, then the house, then maybe myself but rather than ever getting the things I need for myself I will always put others first and get things for them because at the end of the day what I really want is my health and I can't have that. Seeing other people happy makes me happy. Don't get me wrong I love little gifts just as much as the next person but I like making other people happy.
I feel guilty for taking help that I should be getting never mind anything else and because I don't ever ask for help it gets to me when I do eg at the doctors and you basically just get ignored. I am a very proud person and I wish I could have the energy to cook and clean and be the perfect wife and mother but I can't. Even before I "got ill" I have been plagued all my life with the most horrible depression and anxiety which means sometimes when I am in a very depressive spell yeah I do lack motivation, energy and get up and go. I wish I wasn't like this, but wishing won't change a thing. Nothing will change what happened to me and all the things that continue to happen, things that to an extent have ruined my life ..... Some people have a LOT to answer for. But all of those things are what made me who I am today and all I can do is keep being strong. Who knows if all the things in my life hadn't happened I would be a different person, a stronger person, a happier person .... but one thing I could never be is a braver person. Because only recently have I realised that yes I am in fact one of the most brave, resilient people I know. I may not feel like that at times and at times I don't feel strong and I don't know if I can cope but at those times I will look back on this right here and remind myself that I can do it, I can get through it and with my hubby and daughter by my side I can get through anything this life throws at me because I have hit rock bottom many times and been heartbroken, lost, scared and confused. I have been angry, suicidal and felt alone. I have hurt myself and pushed those close to me away but one thing I have always done with the help of my hubby is manage to claw my way back up and stay strong and keep fighting because I will NOT let these things beat me. I AM stronger than that, I WILL keep fighting and I REFUSE to let these things destroy me. I will smile when I am sad, I will laugh through the tears, I will swallow down my anger to deal with when I am feeling stronger and I WILL NOT LET THIS OR ANYTHING ELSE BEAT ME!!!! I deserve to be happy, I deserve to have an opinion and what I say does matter. I am allowed to speak my mind without worrying about what others will say but not be mean or nasty while doing so. I deserve to walk with my head held high because I have SURVIVED through so much that a lot of others wouldn't have. I have kept on fighting and never gave in, I have been close - I have self harmed and took an overdose in the years before my daughter was born but I will never ever allow myself to give in EVER, because then I have let the things that hurt me win.
I am struggling a bit more with the stairs today, every bit of me from my waist down is in agony - from waist up too but need my bottom half for stairs, It's really P**sing me off but I won't let it beat me and I won't let it define me.
Until the day I die I will KEEP FIGHTING and I will STAY STRONG
Thank You for listening x
My Knight in Shining Armour
So just took meds because I have a bursting sore head again that has been the last 3-4 days. Migraine wafers are only seeming to ease it a bit but then it comes back again and considering I am only allowed 2 a day and max of 10 a month it's really not good.
Had some Bacon on Toast for lunch but now my stomach is in agony again. I hate feeling so unwell. I'm tired and fed up and just want to escape from this pain. A nice relaxing spa treat is what I need if only I had the cash and a babysitter because think Darling Hubby needs a relaxation break too.
Every bit of me is sore I don't think there is a bit of me that doesn't have pain or feel sore and yucky.
I have pain in places I didn't even think possible. I feel so stressed out and honestly just want to scream, I can't get the words out to describe how I feel. I'm fed up, pissed off and just wish for once I could be pain free or not so tired.
I think one of the hardest things sometimes about being ill is getting people to understand that you just can't do some things or sometimes just can't be bothered doing anything. Understanding is a hard thing but compassion is not. How do you explain to people that sometimes you just don't want to talk, don't want phone calls. Don't have the energy to reply to things or make decisions.
For the last year all my life has been is pain, worry and appointments and the only person that seems to "get it" is my hubby, he is the one there every step of the way. Even though at times things have been a BIG strain on our relationship, even though at times I can be a downright bitch to him because he is the only one there so my anger gets vented on him which I know is not fair. I know he's no angel, neither me or him would claim he is but at the end of the day he is only human, he is here, sometimes the only person that is here for me. He has stuck by me and continues to stick by me through thick and thin, where a lot of lesser men may have walked away. The is what a partnership and marriage is all about. We just need to have the wedding, in our hearts we are already married just not legally lol. The only reason we are not is money.
There is part of me that just wants to get to witnesses go to registry office and that would be it we would be officially married. But then there is the part of me that wants that 1 day that I get to feel like a princess and I know that's what my daughter wants she wants me and her to be the beautiful princesses and her daddy to be our handsome prince and that part of me wants to hold on to that dream of 1 happy fairytale day.
Hubby said to me a couple of months ago that he wants to do it soon while I can actually still walk down the aisle and have that first dance and as the tears filled my eyes I was reminded of how loving, caring and absolutely awesome he was. If only we had the money.
Same thing with the car he went and learnt to drive and passed first time so it would be easier for me to get out and about yet we can't afford a car. I know this gets to him because he deserves to have a car and get out and about himself and because of me being ill he can't yet he rarely complains about it. I wish I could give him that one thing. He has done so much for me and continues to do so and there are no words that can describe how much I love him or how grateful I am for everything he has done for me and continues to do. He truly is my knight in shining armour, my angel and the love of my life. And I wouldn't change him or our beautiful for the world.
Had some Bacon on Toast for lunch but now my stomach is in agony again. I hate feeling so unwell. I'm tired and fed up and just want to escape from this pain. A nice relaxing spa treat is what I need if only I had the cash and a babysitter because think Darling Hubby needs a relaxation break too.
Every bit of me is sore I don't think there is a bit of me that doesn't have pain or feel sore and yucky.
I have pain in places I didn't even think possible. I feel so stressed out and honestly just want to scream, I can't get the words out to describe how I feel. I'm fed up, pissed off and just wish for once I could be pain free or not so tired.
I think one of the hardest things sometimes about being ill is getting people to understand that you just can't do some things or sometimes just can't be bothered doing anything. Understanding is a hard thing but compassion is not. How do you explain to people that sometimes you just don't want to talk, don't want phone calls. Don't have the energy to reply to things or make decisions.
For the last year all my life has been is pain, worry and appointments and the only person that seems to "get it" is my hubby, he is the one there every step of the way. Even though at times things have been a BIG strain on our relationship, even though at times I can be a downright bitch to him because he is the only one there so my anger gets vented on him which I know is not fair. I know he's no angel, neither me or him would claim he is but at the end of the day he is only human, he is here, sometimes the only person that is here for me. He has stuck by me and continues to stick by me through thick and thin, where a lot of lesser men may have walked away. The is what a partnership and marriage is all about. We just need to have the wedding, in our hearts we are already married just not legally lol. The only reason we are not is money.
There is part of me that just wants to get to witnesses go to registry office and that would be it we would be officially married. But then there is the part of me that wants that 1 day that I get to feel like a princess and I know that's what my daughter wants she wants me and her to be the beautiful princesses and her daddy to be our handsome prince and that part of me wants to hold on to that dream of 1 happy fairytale day.
Hubby said to me a couple of months ago that he wants to do it soon while I can actually still walk down the aisle and have that first dance and as the tears filled my eyes I was reminded of how loving, caring and absolutely awesome he was. If only we had the money.
Same thing with the car he went and learnt to drive and passed first time so it would be easier for me to get out and about yet we can't afford a car. I know this gets to him because he deserves to have a car and get out and about himself and because of me being ill he can't yet he rarely complains about it. I wish I could give him that one thing. He has done so much for me and continues to do so and there are no words that can describe how much I love him or how grateful I am for everything he has done for me and continues to do. He truly is my knight in shining armour, my angel and the love of my life. And I wouldn't change him or our beautiful for the world.
Titanic
OK so for today's first post. Got up at half 8 this morning then went back to bed for a bit, was just so sore and tired - Even though I have a new bed now which is much better that my old broken one the pain I am in when I wake up is unbelievable especially in my back. I swear it's getting worse. So another sore painful day today looks like it's on the cards.
Got Appointment through for Gastroenterologist today for the 19th, It's a different doctor again. Think they are the ones that are mucking about the most so I'll wait and see what they have to say this time.
Today we are watching Titanic as My daughter J has been going on and on about it but now she has the wee sad confused face and keeps saying they aren't going to die and does the granny come back to life lol. Trying to tell her Rose is the Granny. Aww her poor wee sad face xxx
She is now arguing that Rose isn't the wee old lady lol. Gotta love Titanic, have seen it so many times. Even went to the pictures to see it in 1997 when it first came out. Didn't let her see the end where the old lady died. Now she is saying the old lady is still nice and cute which has caused much laughing and hilarity. I'm glad I can still laugh even though I feel like crap. Gotta love my wee honey bug x
Got Appointment through for Gastroenterologist today for the 19th, It's a different doctor again. Think they are the ones that are mucking about the most so I'll wait and see what they have to say this time.
Today we are watching Titanic as My daughter J has been going on and on about it but now she has the wee sad confused face and keeps saying they aren't going to die and does the granny come back to life lol. Trying to tell her Rose is the Granny. Aww her poor wee sad face xxx
She is now arguing that Rose isn't the wee old lady lol. Gotta love Titanic, have seen it so many times. Even went to the pictures to see it in 1997 when it first came out. Didn't let her see the end where the old lady died. Now she is saying the old lady is still nice and cute which has caused much laughing and hilarity. I'm glad I can still laugh even though I feel like crap. Gotta love my wee honey bug x
Wednesday, 4 April 2012
Start Listening Doctors
I've had depression nearly all my life so well before I got fibro but I don't like how doctors the straight away assume everything is "all in your head" because you have mental health problems at the end of the day I know the cause of my depression but people with depression still get real illnesses luckily I had CPN and Psychiatrist to back me up on the fact the pain and illness was real and not "all in my head" a lot of people don't have that.
I think it's about time doctors got a grip of themselves and realised people with Mental Health Problems are normal people to. Ever heard of the "SEE ME" campaign, yet it is doctors that attach a lot of the stigma to mental illness and treat us like second class citizens. They should look at every person with symptoms the same rather than saying oh wait a minute in your notes you have depression therefore anything you come here about that I can't see and even some I can must all be in your head. Start Listening Doctors
I think it's about time doctors got a grip of themselves and realised people with Mental Health Problems are normal people to. Ever heard of the "SEE ME" campaign, yet it is doctors that attach a lot of the stigma to mental illness and treat us like second class citizens. They should look at every person with symptoms the same rather than saying oh wait a minute in your notes you have depression therefore anything you come here about that I can't see and even some I can must all be in your head. Start Listening Doctors
My Diagnosis's
OK so here goes so far my illnesses/diagnosis's
Fibromyalgia
Joint hypermobility syndrome
Degenerative Spinal wear & tear / Prolapsed Disk
Colitis & 2 places on colon oozing blood (yet then My GP told me biopsy's were clear even though they seen it during colonoscopy)
Idiopathic Intracranial Hypertension (& Swollen Optic Nerves)(Causes Pressure Headaches)
Antiphospholipid Syndrome (Hughes Syndrome) (Told me this was cause of my recurrent miscarriages which I've had 4, 1 of them at 14 1/2 weeks and 1 at 16 weeks)(However blood tests now show as negative)
Migraines
Recurrent Miscarriages
Abnormal Liver Function
Psoriasis
Positive ANA blood Test (which has since been negative)
Depression
Anxiety
Tiny cyst on one ovary
Hiatus Hernia
IBS
Other symptoms also include
Hair falling out and what looks like bald patches
Strange rashes and new allergies eg playdough, baby wipes, medical tape...
All over muscle/joint/bone pain
Random Swelling
Unexplained bruising
Excessive Sweating
Constant Temperature Fluctuations
Extreme Fatigue
Constant Gagging
Nausea
Blood in my vomit
Severe daily diarrhoea
Throat seizing up
Difficulty swallowing Medication
Severe stabbing stomach and bowel pain
Symphysis Pubis Dysfunction when I was pregnant with daughter
Chronic hip pain
Electrical pulse pains up my spine
Sciatica
Regular Thrush Infections
Severe Pain during sex
Chest pains
Pseudo-Dementia Fibro Fog could explain this)
Yellowing skin on eyelids
Constant redness across my cheeks looks bit like rosacea
Weight Loss
Abdominal Swelling
Fast Pulse
Stabbing pain in eyeballs
Itchy eyes
Generally feeling unwell and run down
Also when I am pregnant and my waters break I go into full blown constant labour (when this happened with my daughter I was in constant labour but wouldn't dilate past 3 Cm's, when I had miscarriage at 16 weeks I gave birth about 30 Min's after waters breaking maybe not even that)
When Pregnant with my daughter also had dilated Kidney
This is all I can think of at the moment there is probably more.
To me I think they may be missing something, surely there is something that covers everything because a lot of these thing only became problematic after the trigger point which was in June 2010 when I had miscarriage at 16 weeks, also exactly one week after miscarriage I had blackout/seizure and when I came round I had wet myself yet this was never investigated as a lot of the things haven't been.
Any suggestions?
Fibromyalgia
Joint hypermobility syndrome
Degenerative Spinal wear & tear / Prolapsed Disk
Colitis & 2 places on colon oozing blood (yet then My GP told me biopsy's were clear even though they seen it during colonoscopy)
Idiopathic Intracranial Hypertension (& Swollen Optic Nerves)(Causes Pressure Headaches)
Antiphospholipid Syndrome (Hughes Syndrome) (Told me this was cause of my recurrent miscarriages which I've had 4, 1 of them at 14 1/2 weeks and 1 at 16 weeks)(However blood tests now show as negative)
Migraines
Recurrent Miscarriages
Abnormal Liver Function
Psoriasis
Positive ANA blood Test (which has since been negative)
Depression
Anxiety
Tiny cyst on one ovary
Hiatus Hernia
IBS
Other symptoms also include
Hair falling out and what looks like bald patches
Strange rashes and new allergies eg playdough, baby wipes, medical tape...
All over muscle/joint/bone pain
Random Swelling
Unexplained bruising
Excessive Sweating
Constant Temperature Fluctuations
Extreme Fatigue
Constant Gagging
Nausea
Blood in my vomit
Severe daily diarrhoea
Throat seizing up
Difficulty swallowing Medication
Severe stabbing stomach and bowel pain
Symphysis Pubis Dysfunction when I was pregnant with daughter
Chronic hip pain
Electrical pulse pains up my spine
Sciatica
Regular Thrush Infections
Severe Pain during sex
Chest pains
Pseudo-Dementia Fibro Fog could explain this)
Yellowing skin on eyelids
Constant redness across my cheeks looks bit like rosacea
Weight Loss
Abdominal Swelling
Fast Pulse
Stabbing pain in eyeballs
Itchy eyes
Generally feeling unwell and run down
Also when I am pregnant and my waters break I go into full blown constant labour (when this happened with my daughter I was in constant labour but wouldn't dilate past 3 Cm's, when I had miscarriage at 16 weeks I gave birth about 30 Min's after waters breaking maybe not even that)
When Pregnant with my daughter also had dilated Kidney
This is all I can think of at the moment there is probably more.
To me I think they may be missing something, surely there is something that covers everything because a lot of these thing only became problematic after the trigger point which was in June 2010 when I had miscarriage at 16 weeks, also exactly one week after miscarriage I had blackout/seizure and when I came round I had wet myself yet this was never investigated as a lot of the things haven't been.
Any suggestions?
Yummy Scrummyness
Just had my dinner tonight I had Steak Pie, Chips, Broccoli and Bread & Butter. It was yummy scrummy deliciousness, thank you to my wonderful hubby for making it. But now as usual after every time I eat I had bad stabbing pains in my stomach and weird jaggy pains in my mouth. I hate that every time I have a meal I get excruciating stomach and bowel pains.
The unrecognised carers, Thank You!
Having a really bad day today I feel so ill, have a really really bad migraine that won't go away. I have took my migraine wafer and strong painkillers but it still wont shift. Feel to warm, too sore and just really crappy.
However I done my hair and makeup to go to the shop and while I though I looked and felt crappy (really dry skin on my head, hair seems really greasy today) I came down the stairs and my darling hubby told me I looked really good before I even said that I felt like crap and thought I looked the same lol. Have not done make-up all last week because for some reason I keep getting abnormal rashes and reactions to things that I was previously fine with, plus I've not really been feeling up to it. So waiting for the facial explosion lol, that's just my luck.
I have to say it is my hubby and daughter that keep me going especially on days like this, as much as they both drive me cuckoo at times I wouldn't change them for the world. He has been my carer for 10 nearly 11 years since we met through my depression etc but in the 22 month since I "got ill" and gradually got worse over the last year or so he has had to take on a much greater job as my carer while still being my partner and a father to our daughter while keeping in mind that minus the physical illnesses I still have Mental Health Problems and he still needs to watch out for the warning signs and triggers to a depressive stage.
I don't think he or other carers get enough recognition for what they actually have to do and it winds me up.
Meanwhile I made it to the shop even feeling like this and got the few wee bits and bobs we needed, while coming back i was crossing road when a smart ass in a black Honda decides after he turns corner which was a wee bit away from where I was to slam the foot on the Accelerator ... Oh my god I am crossing the road with a walking stick and was on the road before you even turned your car round the corner which I am not even near, wouldn't be that if the idiot had actually hit me - Boils my blood, hate ass holes like that.
My daughter continues to screech and cry and fly of the handle for no reason. I can't stand it especially when I have a migraine and feel like this. I love her to bits but wish she would just behave and listen. The screechy screechiness goes right through me and the constant moods and crying about everything. ARGGGGH.
I love her so much but sometimes it is a struggle to manage with her. She is a very high maintenance and full on little girl and very hyper. Don't think people realise how hard it is sometimes especially when you have no-one to babysit or take her off your hands for a day or night. Think most other people with children have some kind of support network but we do not, that in itself is hard for anyone with a child but for someone who is very ill too it is sometimes a constant struggle. She is 4 going on 14 and a little genius and I know that this and because she needs constant stimulation which due to me being unwell I can't always give her contributes to her attitude and moods. All I want is to be a good mother and for her to be happy and healthy.
At the end of the day she is my wee miracle and you need to take the rough with the smooth. She is outspoken, grumpy and highly strung a bit like me lol but she is also beautiful, smart, funny, caring, helpful, silly, wonderful, amazing little smarty pants and I love her to the moon and back. She and her daddy are my full world and without them I wouldn't be here. So to them I Love You Always and Forever - Yous are both my strength and weakness, my life, my love, my happiness and the light at the end of the tunnel. Yous keep me strong and keep me fighting and give me something to fight for. Yous drive me crazy but I love yous all the same. Yous make me whole and keep me going and for that I am thankful, because even though in my life I have had a mountain to deal with I have both of you and that helps make it easier.
I would like everyone to be thankful for there family, the ones who sometimes forget how much us being ill actually affects. The ones that are there for you day in day out struggling along with us. And to they people I would like to thank on the behalf of anyone who is ill because yous make our lives a little bit more bearable.
Thank You!
However I done my hair and makeup to go to the shop and while I though I looked and felt crappy (really dry skin on my head, hair seems really greasy today) I came down the stairs and my darling hubby told me I looked really good before I even said that I felt like crap and thought I looked the same lol. Have not done make-up all last week because for some reason I keep getting abnormal rashes and reactions to things that I was previously fine with, plus I've not really been feeling up to it. So waiting for the facial explosion lol, that's just my luck.
I have to say it is my hubby and daughter that keep me going especially on days like this, as much as they both drive me cuckoo at times I wouldn't change them for the world. He has been my carer for 10 nearly 11 years since we met through my depression etc but in the 22 month since I "got ill" and gradually got worse over the last year or so he has had to take on a much greater job as my carer while still being my partner and a father to our daughter while keeping in mind that minus the physical illnesses I still have Mental Health Problems and he still needs to watch out for the warning signs and triggers to a depressive stage.
I don't think he or other carers get enough recognition for what they actually have to do and it winds me up.
Meanwhile I made it to the shop even feeling like this and got the few wee bits and bobs we needed, while coming back i was crossing road when a smart ass in a black Honda decides after he turns corner which was a wee bit away from where I was to slam the foot on the Accelerator ... Oh my god I am crossing the road with a walking stick and was on the road before you even turned your car round the corner which I am not even near, wouldn't be that if the idiot had actually hit me - Boils my blood, hate ass holes like that.
My daughter continues to screech and cry and fly of the handle for no reason. I can't stand it especially when I have a migraine and feel like this. I love her to bits but wish she would just behave and listen. The screechy screechiness goes right through me and the constant moods and crying about everything. ARGGGGH.
I love her so much but sometimes it is a struggle to manage with her. She is a very high maintenance and full on little girl and very hyper. Don't think people realise how hard it is sometimes especially when you have no-one to babysit or take her off your hands for a day or night. Think most other people with children have some kind of support network but we do not, that in itself is hard for anyone with a child but for someone who is very ill too it is sometimes a constant struggle. She is 4 going on 14 and a little genius and I know that this and because she needs constant stimulation which due to me being unwell I can't always give her contributes to her attitude and moods. All I want is to be a good mother and for her to be happy and healthy.
At the end of the day she is my wee miracle and you need to take the rough with the smooth. She is outspoken, grumpy and highly strung a bit like me lol but she is also beautiful, smart, funny, caring, helpful, silly, wonderful, amazing little smarty pants and I love her to the moon and back. She and her daddy are my full world and without them I wouldn't be here. So to them I Love You Always and Forever - Yous are both my strength and weakness, my life, my love, my happiness and the light at the end of the tunnel. Yous keep me strong and keep me fighting and give me something to fight for. Yous drive me crazy but I love yous all the same. Yous make me whole and keep me going and for that I am thankful, because even though in my life I have had a mountain to deal with I have both of you and that helps make it easier.
I would like everyone to be thankful for there family, the ones who sometimes forget how much us being ill actually affects. The ones that are there for you day in day out struggling along with us. And to they people I would like to thank on the behalf of anyone who is ill because yous make our lives a little bit more bearable.
Thank You!
Hot Cross Buns
Just had a wee nice toasted hot cross buns with some butter. Rather tasty. However Burnt my finger again, see that why I shouldn't use the cooker, blooming fool that I am. Need to go up and get ready to go to shop can't be bothered but needs must. Have a few stressful things I need to vent about but don't know that I'm totally ready yet but it will come.
So far I don't really know how well I will do at this blogging. I would love to be one of those people that people just want to read everything they write, suppose that is the artistic, creative writer in me.
My dream would be my blogs being made into a book how awesome would that be, I know it can happen but don't really think my writing is interesting or eloquent enough. Mind you that could just be my obsession with books. I often feel my life story would make an interesting read to others, haha I could be rich beyond my wildest dreams, but that kind of thing only happens to other people not me. I am the person when you read all these messed up things that happen to people you think yeah that only happens to other people. Think I may just be one of the unluckiest people ever, yet I live my live trying to be as nice as I can yet constant shit is always flung my way. In life even one of the things that has happened to me would be hard to deal with but everything together is just a damn joke. Sometimes I do think "Why me, why is it always me?" but then I can't live my life like that it won't change a thing and no doubt all the hardships I have already experienced is not the last of them. So I need to try and be strong for me, my daughter and my hubby. Without them I would be nothing.
I am not feeling sorry for myself or wanting sympathy, it won't change anything. I just want to be understood..
So far I don't really know how well I will do at this blogging. I would love to be one of those people that people just want to read everything they write, suppose that is the artistic, creative writer in me.
My dream would be my blogs being made into a book how awesome would that be, I know it can happen but don't really think my writing is interesting or eloquent enough. Mind you that could just be my obsession with books. I often feel my life story would make an interesting read to others, haha I could be rich beyond my wildest dreams, but that kind of thing only happens to other people not me. I am the person when you read all these messed up things that happen to people you think yeah that only happens to other people. Think I may just be one of the unluckiest people ever, yet I live my live trying to be as nice as I can yet constant shit is always flung my way. In life even one of the things that has happened to me would be hard to deal with but everything together is just a damn joke. Sometimes I do think "Why me, why is it always me?" but then I can't live my life like that it won't change a thing and no doubt all the hardships I have already experienced is not the last of them. So I need to try and be strong for me, my daughter and my hubby. Without them I would be nothing.
I am not feeling sorry for myself or wanting sympathy, it won't change anything. I just want to be understood..
First of the day
Well today this is my first entry of the day have been up since about 10 but takes me a while to come round in the morning. Definitely feel mornings are worse the pain when I wake up is unbearable and if I didn't have a wee one I'd roll back over and sleep all day. In the morning my back pain is indescribable. Today I feel quite yucky again, bowels are sore, migraine kinda teetering on the edge of coming and I just feel so sore. It is hard to comprehend that this is what my life will be like - people say Fibromyalgia isn't degenerative. Well for me it's just always getting worse - the pain, the fatigue, the general feeling just so damn unwell. So conventionally it may not be degenerative in the way a lot of other diseases are but I have to feel to a point that it is. Yeah there are flare up and remission periods and I have not had it long enough to judge. But even in remission periods I am still in constant pain just not as much as the "flare ups". During so called flare ups I just feel so generally unwell and so ill and people don't seem to get that. I AM ILL - just sometimes more than others. But I push myself to do more than I probably should then end up burning out. Last week I was so ill, the worst day I would have happily went to sleep and never woke up. But I continue to fight.
I have just moved house and know I pushed myself way to hard on the days I was able to and probably even on the days I wasn't really. I didn't listen to my body because I couldn't I didn't have a choice but to do things. Is that why I ended up so ill. Can it really be classed as remission and flare ups when remission may only last a few hours or a few days at the most and during that time I am in constant pain but maybe not feeling as ill, sick, crappy as if I'd happily never wake up - this doesn't mean I'm suicidal, I've been there before; before I "got ill". So am I in a constant flare up? Does anyone have remissions where they are not sore, feel good and well? Or is this maybe because - as I feel - there is something more than fibromyalgia? There is something the doctors are either missing or not telling me. After my coffee I will list my known so called "separate" illnesses. I feel they are all connected and not just to Fibromyalgia. I feel Fibro is a symptom rather than a cause or diagnosis in my case.
How can I fight what in my heart and head I know isn't the only problem? How can I get doctors to listen? They can't see the pain, can't feel how ill I feel. I am a young woman. I am only in my late 20's. This is not usual. Pissed off because I feel like I will always be fighting a losing battle.
I have just moved house and know I pushed myself way to hard on the days I was able to and probably even on the days I wasn't really. I didn't listen to my body because I couldn't I didn't have a choice but to do things. Is that why I ended up so ill. Can it really be classed as remission and flare ups when remission may only last a few hours or a few days at the most and during that time I am in constant pain but maybe not feeling as ill, sick, crappy as if I'd happily never wake up - this doesn't mean I'm suicidal, I've been there before; before I "got ill". So am I in a constant flare up? Does anyone have remissions where they are not sore, feel good and well? Or is this maybe because - as I feel - there is something more than fibromyalgia? There is something the doctors are either missing or not telling me. After my coffee I will list my known so called "separate" illnesses. I feel they are all connected and not just to Fibromyalgia. I feel Fibro is a symptom rather than a cause or diagnosis in my case.
How can I fight what in my heart and head I know isn't the only problem? How can I get doctors to listen? They can't see the pain, can't feel how ill I feel. I am a young woman. I am only in my late 20's. This is not usual. Pissed off because I feel like I will always be fighting a losing battle.
Night Night
Finally going to go to my bed try and get some sleep as my eyes are stinging. Stomach cramps are playing up again... Will go before I fall asleep on the couch again
Night Night World and Thanks for listening xxx
Night Night World and Thanks for listening xxx
Changed my Mind
No wait I am blaming damn fibro meds, only when I started on Amytriptaline the night-time hunger started and got worse as dosage increased and it's night I take them at. Just had 3 oreos and nomming through my second chunk of tiger bred with utterly buttery on it, real butter would be better but needs must and it needed eaten. Could never do The Atkins Diet - I Love Bread
Crunchy Nut Cornflakes
I think I have a serious addiction to crunchy nut cornflakes. Damn Fibro Meds. Every night around this time I need a bowl and I can never find a bowl big enough so need to go back and top up the crunchy deliciousness, the adverts for it are so true but I'd need a small bowl and top ups otherwise they'd go too soggy and I like the yummy crunchiness . Tonight I am having them with a chopped up banana in it, not had that in ages and forgot how super delicious it was. I just wished they stayed crunchy though, or maybe I eat too slow but I like to savour their crunchy deliciousness and enjoy every bite. I'll be putting back on all that weight I lost, but I suppose I usually just have 1 meal a day and lately had been struggling to eat. I always have preferred breakfast at supper time. Just noticed all the spelling mistakes, not happy that's not me .... thank heavens for spell checks - MISTAKES BE GONE!!!!!! (swoosh swoosh swoosh)
Just realised I blamed Poor Fibro Meds, I should have said Damn 101million different illness meds but that's not quite got the same ring to it. Maybe it's just as well they don't give me all the medicine's I should get for all the different illness, I'm already thinking of taking out shares in the pharmacies and medicine companies with the amount I get.
Oh and PS - My knees are burning and in agony, it is spreading up my hip and full left side. Everywhere hurts but there are bits that feel like they are on fire, my eyes are stinging and my hands are frozen. Think it's about time for bed.
Just realised I blamed Poor Fibro Meds, I should have said Damn 101million different illness meds but that's not quite got the same ring to it. Maybe it's just as well they don't give me all the medicine's I should get for all the different illness, I'm already thinking of taking out shares in the pharmacies and medicine companies with the amount I get.
Oh and PS - My knees are burning and in agony, it is spreading up my hip and full left side. Everywhere hurts but there are bits that feel like they are on fire, my eyes are stinging and my hands are frozen. Think it's about time for bed.
Tuesday, 3 April 2012
Forgetting My passwords
Had mucked up, too many tabs and two different web browsers open to check my seperate accounts went to log back in and BAM wrog password. Now I know at least one of them I entered was correct as I only made the account earlier today. So had to reset and create new password. Damn you Fibro Fog
Some Interesting Reading
Roanoke Chiropractor Thoughts on Fibromyalgia
http://www.chiropractorroanokeva.com/roanoke-chiropractor-thoughts-on-fibromyalgia/Had a quick scan through - although I will need to have a proper read at it and take some notes when my head isn't so sore. Just took my painkillers (although they don't even touch the pain never mind kill it) Co-Codamol 30/500. Sometimes I think my doctor's are seriously having a joke. Will take my night time meds in a bit and relax or at least try to with a coffee and some "herbal medicine" although that to only dulls the pain a tiny bit. But what can I do when my so called Dr's refuse to understand the pain - a lot of which is from my back which as yet they have not treated even though they have seen I have degenerative spinal wear & tear and a prolapsed disk, at least I have physio for that in about a fortnight. But seems to be if I didn't have fibro they might have actually treated that, but then even the diagnosis of fibromyalgia seems like a cop-out, considering the diagnosis is fibro plus a list of other things. In my opinion they should be looking at all the separate illnesses and symptoms and piecing them together like a jigsaw and trying to figure out what causes all these things considering they all started from the trigger point. Every day new symptoms appear and so far there have been so many and with my mind being all foggy it is often hard to remember them all when I see my GP or I feel there is too many things and not enough time. Most of the time I feel I am having to repeat myself with them over and over as they still aren't really treating the pain, which fair enough I know it is hard for GPs but they are not the ones struggling daily with the pain. Each time I go to see another specialist at the hospital I feel as if there is something in my notes I am not being told. Take for example yesterday when I was at the haematologist and he said "The very complicated and complex diagnosis the rheumatologist has gave you" and silly me didn't ask what in fact that diagnosis was - would he say that if it was simply fibromyalgia? I'm not so sure. The when talking about blood results he said "But we expect some abnormal results in someone like you / with your diagnosis". Can't remember exact words but along those lines, think I may need to buy a Dictaphone and take it with me to appointments. Again to me that doesn't seem true to someone with Fibro - I'm not sure I am new to this but have read up quite a lot on it and while true a lot of the symptoms are covered in FMS, a lot of them aren't. I also have Hypermobility forgot to mention that at the start. So what connects all these things or am I just unlucky enough to have got a handful of separate illnesses at the one time. I will need to list them all down and see if anyone else with fibro has all them, but not just now my brain hurts to much. I am baffled and confused and feel I am fighting a losing battle.
Baths = Relaxing ..... Really?
Whoever said baths were relaxing? Not for me it seems. Firsty as much as I love my wee Daughter baths with her are kind of stressful. Over the last week I have been exremely unwell and firsty developed a rash on my neck (which looks like blitered goosebumps) then I was sick and got a horrible rash on my face which looked like broken blood vessels and bruising all over my face. The facial rash has gone now however the one on my neck is still there and when I go for a bath it gets even more itchy and feels as if my skin is crawling.
So tonights bath was NoT relaxing - My rash again is extremely itchy even though I tried using different shower gel - Palmolive which my skin is usually ok with. So I am thinking it may be the bubble bath. I have bad psoriasis anyway but my skin now feels really tight, horrible and itchy. And to make things worse my Right hand and wrist is now in agony and the wrist is a little swollen - the pain is progressing up my arm also.
I hate being like this, I hate being so damn ill, itchy and sore. I am so bloody fed up with it. When I can now no longer enjoy a bath.
What can I do? I am afraid to even put my make-up or perfume on, just when I had started making sure I did to try and make me feel better. And for the first time in so long I had felt pretty. Then Bam this damn illness decides that is not to be.
I just sometimes wish I could wave a wand and everything would be better.
This sucks so much.
So tonights bath was NoT relaxing - My rash again is extremely itchy even though I tried using different shower gel - Palmolive which my skin is usually ok with. So I am thinking it may be the bubble bath. I have bad psoriasis anyway but my skin now feels really tight, horrible and itchy. And to make things worse my Right hand and wrist is now in agony and the wrist is a little swollen - the pain is progressing up my arm also.
I hate being like this, I hate being so damn ill, itchy and sore. I am so bloody fed up with it. When I can now no longer enjoy a bath.
What can I do? I am afraid to even put my make-up or perfume on, just when I had started making sure I did to try and make me feel better. And for the first time in so long I had felt pretty. Then Bam this damn illness decides that is not to be.
I just sometimes wish I could wave a wand and everything would be better.
This sucks so much.
All Set Up
That's everything all set up - This Blog,
New facebook account - http://www.facebook.com/fibromyalgiawherehasmymindgone?sk=wall
New facebook group - http://www.facebook.com/groups/216170661821075/
New Twitter - https://twitter.com/#!/TaintedTortured
I'm still not sure how I feel about doing this as I feel worried that people will know it's me and the I won't be able to be truthful about EVERY aspect of my life as I won't want to offend or any confrontation. I should be able to do this though - for myself and screw what anyone else thinks. Just still feeling very unsure as it is nearly impossible to be totally anonymous these days.
Just now my heart feels heavy and I feel very anxious which I know I shouldn't be, Maybe it is just writing it all down it then becomes public knowledge. My thoughts, my feelings - but the full point was to try and help myself and others. I just don't know - in a way I also feel that no-one will follow this or join my group, twitter ect. I can't decide whether that is low self esteem or the fact that I wonder why anyone would even be interested in anything I have to say.
I have said for so long that I needed to do this though, even just for myself to look back on and track my feelings and illnesses and memories.
But as much as I fear people reading what is basically my diary, on the other hand feedback and even advice would be good
Feeling unsure and confused Arrrgh
New facebook account - http://www.facebook.com/fibromyalgiawherehasmymindgone?sk=wall
New facebook group - http://www.facebook.com/groups/216170661821075/
New Twitter - https://twitter.com/#!/TaintedTortured
I'm still not sure how I feel about doing this as I feel worried that people will know it's me and the I won't be able to be truthful about EVERY aspect of my life as I won't want to offend or any confrontation. I should be able to do this though - for myself and screw what anyone else thinks. Just still feeling very unsure as it is nearly impossible to be totally anonymous these days.
Just now my heart feels heavy and I feel very anxious which I know I shouldn't be, Maybe it is just writing it all down it then becomes public knowledge. My thoughts, my feelings - but the full point was to try and help myself and others. I just don't know - in a way I also feel that no-one will follow this or join my group, twitter ect. I can't decide whether that is low self esteem or the fact that I wonder why anyone would even be interested in anything I have to say.
I have said for so long that I needed to do this though, even just for myself to look back on and track my feelings and illnesses and memories.
But as much as I fear people reading what is basically my diary, on the other hand feedback and even advice would be good
Feeling unsure and confused Arrrgh
So Finally Figured out how to change time zone. So time on first post is wrong lol. Had my dinner had spicy pizza and chips, decided to have some little pickled onions which I feel may have been a bad move as now my belly feels really acidy. Think it may take me a wee while to get used to this blogging malarky.
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