Friday, 30 May 2014

New Blog??? I need opinions

I'm Back!!!!
Again I haven't posted in a very long time, almost a year I think.  The problem a lot of the time was trying to stick to the one topic when really I feel that there is so much more I want to talk about and need to talk about, rather than "Just" Fibromyalgia.
So I am in a bit of a quandary as I loved doing this when I could and hoping my words could help and inspire people, but I want to write about Soooo much more.
I don't know whether to keep this blog and just change the name, or to just start a new one altogether, but then the work that I did put into this I worked very hard at.
My life is so much more than Fibromyalgia and maybe I am just realising that, I want to share so much more than just that and appeal to a wider variety.
For example I draw and would love to share my work and get some opinions,  I'm by far not the greatest by I enjoy it and I do try,  I write Poetry and the same goes for that.  I read books, I am addicted to books, they are a HUGE part of my life, along with music and I like sharing opinions on these too or other things that excite me eg 3 weeks from today, I am getting MARRIED!!!!. 
I just want to share so much with the world as well as try and help.  I don't know what to do.  I need some opinions. 
I am worried that the people who follow my blog and who can relate to it may feel a bit betrayed, Oh I don't know.  I know in my own head what I mean.  I think it would be easier for me to keep up with a blog to which I can post anything and everything. 
Something that is Just me, all of me and not just a little part.  That each day could take you down a totally different path while still talking about Fibromyalgia and my other illnesses and the HUGE impact that they actually have on my life. 
I want or I need to add some fun and happiness and talk about things that make me feel like this, now here comes the problem.  I don't do "Happy" writing.  I write better when I'm in the grips of Depression, when I'm struggling and suffocating under the strain of life.  But even the I "WRITE", good old fashioned pen and paper crazy ramblings.  I have books and books of them, and though I find people would find them hard to read, I feel they would "Enjoy" them because they are my best work.
I would love one day to get my work published, but then again this scares me as it is deeply personal and would probably need to be highly edited.
My life story I believe would astound and interest people especially if you read the Biography style books like "A child called it", "Sickened" both of which I have read, Real life stories that can grip the world.  Unbelievable stories that "Only happen to other people".  My life story is like that, in so many ways, on so many different subjects, over and over again.
People that know my story have often questioned how so much pain and heartache, and bad things I suppose can happen to one person and they still have some of their sanity, still get out of bed every morning.  And I wont lie, a lot of the time it is extremely difficult.  Living life waiting for the next bad thing to happen.  But I don't want to live like that, but I also don't want to hide who I am or what has happened to me. 
There is always someone worse off, but I can relate to so many things on the most personal level.  My creativity and my writing, drawings, poetry etc is who I am inside and often at my darkness.  Even when there is light in my life, the darkness will always be there and it's how I cope.  How I express who I am.  One thing I have always done and I believe I always will do is; Have hope and believe, Believe in something better, believe I was meant for more than this and meant to be greater, believe that everything I have went through and will go through is for a reason, even when I feel like giving in.  The world doesn't know my story yet, I haven't inspired them yet and I can't ever be done until I do.
Anyway I would like some thoughts and opinions on what to do blog-wise.

Thank you all for listening again

Wednesday, 24 April 2013

Just Me!

I often wonder about my life and the point to it, my brain never stops all these random thoughts and memories bombarding me that i can never switch off.  I am so, so angry and agitated all the time about everything and i just want it to stop. I look at myself and I see everything and nothing.  And anger..... So much anger, some days it blinds me.  I want to make it stop, be at peace and be free.  Free from my own messed up mind.

I long to be understood, but know no one can understand.  No-one can understand all the constant hurdles and torments my life has thrown at me.  Unless someone has been through the exact same things all of their lives, and I wouldn't wish that on anyone.  Now that being said I know people however can sympathise, but that still only goes so far and there are things maybe about your personality that they will never understand and that maybe even anger them.  Things about the little things that you are, and the way your brain so geniusly (I know that's not a word) but dumbly works, things that you have no words to explain to other people, many of those frustrated "Oh, I can't explain it" conversations.  I can never find my words from brain to mouth or fingers to explain what I mean or what is in my head.

I wish I coud just let it all out, maybe on this i think maybe someone will hear me, understand if not the facts as they will never know all of them but the feelings, most likely not for the same things altogether but an understanding, knowing someone has heard me.  I don't even understand myself.  I fear I am going to destroy everyone around we with my anger and fear, and everything is falling apart.  I am.  Maybe I am to blame.  I just want help.  I want it to all go away, I don't want to be this person anymore.

But what can I do?  What can I ever do?  My life just always comes back to this, my brain always playing the same way no matter how far I come at trying to beat it, it always beats me back down with the overload of memories reminding me of who I am and why I'm so fucked up.

I will never be the person I want to be, the person I dream of being because it always strikes again.  I wnat so badly to change, to for once feel free with who I am and not trapped inside, desperate to escape from myself.  And this is pretty much the way I always feel, trying everyday to try to be happy, to try and seem happy, to try to forget. Trying to try.  And it's so hard but everyday I face another and someone I get through each day but I feel more wore down, more anxious, more ready to explode.  I really need help.

But I know I will keep surviving because that is what I do. I survive.  This is just me and I know there's probably mistakes and typos and the kind of things that would annoy me but my mind is a bit weary tonight.

Tuesday, 5 February 2013

I really, really hate the NHS - A conversation

I really hate the NHS in all it's forms had nothing but crap from them this week, due to be filing a complaint with a lot of names in it and I will find each person because calls are recorded. Nothing but a total joke you're only there so they can make their cash. I'm sick and tired of getting spoken to and treated like an idiot, I may be to nervous to get the words out or I get confused and lose composure when I feel I am under pressure. I am a patient actually treat me like one and treat me like a human being - they are not the ones having to live this shit but they could at least try a little bloody understanding and empathy. I don't want people to fell sorry for me but I will not be treated like an idiot and constantly messed about. I should at least have a clue by now all of what's happening to me what's happening to me. They are supposed to be there to make you better - not a nervous wreck. No wonder I'm so stressed out - NHS=STRESS!!!!! xxx

  • As someone who worked in the NHS, I have to agree. Doesn't matter how busy they are, or anything else. The patients must be given time, understanding and empathy. And the fullest information and explanations possible. It only takes a little patience and caring.

    Thank you! At first when I saw "As someone who worked in the NHS" I thought I was going to get an earful. But it's nice to see that even though you worked with them you do realise how to treat a patient - one of their customers as such xxx The funny thing is everyone knows this or should know this, it been all over the news for a long time about the NHS and it's hospitals, doctors etc messing up. The ones there have been countless unnecessary deaths, and they show no remorse - they need to do something change their ways. I have been to countless Dr's, specialists, professionals that work for the NHS and it is rife all the way through on occasion you might find a good one but you have to shout awful hard for them to listen. My full adult life has been nothing but NHS and appointments. I am sick of them and the way they treat people, would they want themselves or their families to be treated like that if they were the patients? Hmm I think not! xxx

  • Exactly. It's very different from the patients perspective. And that has been underlined for me in supporting my partner. Staff very often forget what is common place to them is vitally important and often very scary/hard to cope with for the patients. 
    Makes my piss boil. They call patients 'clients' but forget that title means they are providing a service.

    Good to see someone who understands and to that gent, thank you for the conversation.
  • Tuesday, 29 January 2013

    The Girl in the Mirror

    Things just are NOT good.  The fact I am sitting crying for no reason, well apart from remembering and feeling shit I just don’t want to.  I stood taking my nightly meds out of bag (not all of them however) and as tears filled my eyes and rolled over to spill down my cheeks I thought how easy it would be just to take them all and at first I thought just a passing thought because of shit that’s happened and the way my mind works.  Realised no Amitriptyline in bag so went upstairs to get it out of another humongous bag of unused meds the thought became a lot more prominent, pop out a couple of amitriptyline come down stairs and as I stood numb on the spot glancing at the time it was more than just a thought, it became an option and that is not good.  Just as well I’m shit at making decisions and inside am just too scared to do it.  I managed to shake the thought off, but not with the ease I would have wished. I took my meds as I should (again not all them however) and I cried some more.  The reason I don’t do it is because the love and respect I have for my partner and daughter, If I did that he would hate me, and not just the normal kind, that soul destroying kind that would take away every bit of good and just fill it with hate and a) I cannot live or die for that matter with the thought of him hating me  b) I will not be the person that destroys him like that, I love him so much and sometimes I don’t even think he realises that.  I wouldn’t do that to her either, I want her to grown up knowing how much I love her and how much I’ll fight and struggle through in this fucked up nightmare that is my life. 

    Sometimes I sit for a long time just staring at the mirror, most times I don’t even realise in a world of pain going through everything I think and feel, everything I have been through. Never saying a word but talking to the only person that ever has and ever will truly understand me, my reflection, the girl in the mirror.  I cry for her and I cry for me, she sees and is the only one who can ever really see who I am and just how fucked up we both are.

    But I never speak of these things or the things I can only share with her, that sad little girl in the mirror.  I look closer and I see how sunken our eyes have become and wonder why no-one ever told me. I destroy myself and her together and she cries out at me to get better, to make her pretty, to make her feel beautiful again.

    I think of all the things I’ll never have said or I wouldn’t have told someone if they were gone – like my mother I’d tell that yes for a long time I did blame her for what happened to me and I know she blames herself but I was wrong because deep inside I know it wasn’t her fault and yeah things may have been different and that fact can’t change but I think maybe for a long time I needed someone to blame, I blamed myself and sometimes still do.  I blame myself for her leaving me and I know things couldn’t have been easy with an undiagnosed mental health problem, I would say however hard it was for her to hear that I wish she hadn’t told me she had left because she couldn’t handle me because in all honesty that did fuck me up a little bit more.  But in a way it has made me a more determined mum because I will never leave.

    I would tell my partner that I want him to know how truly sorry I am that I betrayed him at the start of our relationship, I have no excuse, I want young, stupid, hurt and scared but I know he has never truly forgave me and I don’t think he ever will and I don’t blame him for that, there are things in our relationship he has done to hurt me and sometimes I think in a way it’s a unknown punishment for what I did.  I fucked up and we have both hurt each other but when I comes to it he is the one that has been there since I was 16, the one who has set his own life aside to care for me and our daughter when she came along, he has been the one to pick up the pieces when everything has fell apart, he has stood by me when most people would have ran a mile.  He has the hardest job in the world and not only do I love and thank him for doing it but I admire him. His strength and courage especially when he has had to push his own feelings to the side to be there for me and be strong for me when inside he has been falling apart.  We fit together, I don’t think we will ever truly understand  each other and we will always have our disagreements and be at loggerheads on certain things but when it comes down to it I truly believe we need each other, I live for him and our daughter and in a heartbeat I’d die for them.

    I’d tell my dad that he is my hero, my whole world and I love him so much.  Throughout my life he is the only person that has always been there, who sometimes says the wrong thing but when I truly need him knows just what to say to make it all seem a bit better.  All I ever wanted was for him to be proud of me.  And I wish I had stuck in at school, went to college and uni and made something of myself.  Sometimes I have felt he is ashamed of me and has tried to hide who I really am, but in his own way I think partly it is to protect me and partly to protect himself.  I don’t know what I will do without him when he is gone, which everyone inevitably will be and that scares me so much.  I long for him to tell me he’s proud of me but by doing something which makes him proud.  I want him to know how immensely proud I am of him, for a lot of things but I know being a single father to two girls can’t have been easy.  I want him to know I need him and that even though I know it was not my fault I am sorry I broke his hard and took his happiness away when I told him what had been happening, I look back and tell13 year old me better words to say, but mostly I want to tell him simply Thank You, and that is for everything.

    I’d tell my daughter she is my everything and I am so, so proud of her.  My little mini me with the craziest mind of her own, only her and her daddy can make me smile and happy and infuriate me so much.  She is our beautiful little genius and changed my life.  I never knew of an overwhelming love and fear for everything they do, well I kind of feel that way about her daddy to.  She makes me cry but no-one can pick me up the way her cute awesomeness can, she truly is awesome by the literal meaning, I am and always have been in awe of her, she amazes me and makes me laugh.  She keeps me going when I need to fall apart (yes need because I don’t ever want to.  I know she is going to be very successful in everything she does, I want to always be her friend, her guidance yet being a good enough mum to put my foot down even if that means she dislikes me.  She is my little miracle, the baby that made it and I am thankful every day that I was blessed with her and it hurts me that I can’t give her a sibling but I know one day she will understand.  And though I want for another baby (desperately at times) I know I am lucky and blessed to have her even if we never have any more.

    To my baby angels, Hope, Sam and my 4 nameless little stars.  Nothing will ever describe the pain of losing you, the hole in my heart that died with each of you.  This will be short because there are no words that I can write that explain what I feel.  I love and miss each of you with every breath, every heartbeat.  To Sam, because you were so real, I know that sounds stupid because all of you were real, but my little Sam, my tears fall for you all too often, I seen you, I held you.  You got tore away from me again and again and I write this with the same tears and heartbreak as the day I lost you, nothing will ever heal that pain.  I remember you dancing about on that little screen exactly 3 hours before you were gone and in that moment part of me died. I worry that you will have felt pain, that it was the birth that killed you, did you take a breath?  And I know that you couldn’t have lived because I was only 16 weeks but you were fully formed, just so, so little.  I just think how happy you were dancing about on that little screen and then you were gone.
    I need to stop now as I am in full blown tears, snot and all, hurting and feeling.  I wish I could sleep, I wish something could numb the pain even just for a little while and not just my physical pain from my concoction of weird and not so wonderful fucked up illnesses – but that’s a story for another day.

    A friend once said a very true thing “she must dement herself with all that going on in her head” and while that is true, it’s not even the half of it.  I often think there must be a reason why all this has happened and continues to happen to me and most times my conclusion is it is some sort of punishment, I’m just trying to work out for what or which thing is punishment for each bad thing I have ever done.

    Sunday, 13 May 2012

    Let me be free

    As I lie here, well sit perched up in my bed I think too much about too many things.  When does this become more bearable?  When does the pain and illness reach a peak?  Because for a "Non-degenerative" disease/illness/whatever the hell this is it just keeps getting worse and worse and worse.  Most of the time the pain is just so unbearable.

    I don't want to live like this,with this daily pains coursing its way through me making me iller and iller and sometimes it seems no-one can understand.  There is only so much moaning they can take and I'm all talked out.  I just want to be normal, happy,pain free.  Not have to suffer any more, is that too much to ask?  Is it too much to want?  Too much to dream?

    I have found that I am not interested in a lot of the things in which I was. Finding myself bored by them, maybe because they seem pointless.  Pointless things when you feel like you are dying, when you are so scared and questioning your own mortality.

    And that is how I feel  - like I am dying.  The illness, the pain.  I try to be strong, try to pretend it doesn't hurt as much that I am not terrified.  But I am.  I just want to be free from its chains.

    Wednesday, 18 April 2012

    Just a thought ...

    While Playing my games I was thinking, and bear with me because I know in my own head what I mean but it's trying to get the words out that make sense.  So forgive me if I sound a bit as if I'm having a "blonde moment" at times but bear with me.

    I think you know when you have met you "Soul Mate" friends and partner wise when you find someone who you just fit with, you are comfortable with, who accepts you as who you are and doesn't run when they find out about illnesses, depression, life experiences they help you through the hard times and help you create new life experiences.  I have met 2 of these people and I feel very lucky.  One of them is my hubby and the other my friend V.  Even though in life people change and will not be the same person you first met they will fit comfortably into your life and you into theirs. Any awkwardness you have with each other will never last and fall away because you know each other, you trust each other and hold a very special place in your heart for each other.  Without them you would  be different,  but the same;  but together you are better.  They have changed your life in a way that you will never forget.

    And I think you can truly accept yourself when you look at the people around me and think if I had fame and fortune and everything money could buy these are still the people I would choose to have buy my side forever sharing my life with me good or bad.

    I am so lucky that I have that and with my hubby I have had it for a long time, but with a friend I had it when I was in my early teens and I hurt her, I didn't mean to but things got all mixed up and we lost touch for years and I kinda mourned our friendship all those years, since I was 16 I haven't really had any friends and my Hubby has been my only real friend but in Jan I met back up with V and it was amazing how quickly we fit back in to each others lives, it was like we had never been apart lol.  I keep thanking her for everything she has done and she keeps telling me stop bloody thanking me that's what friends do, but she has changed my life the same as my hubby has - for years all I wanted was a friend, someone to vent to, someone there to have a gossip in laugh with, who accepts your good and bad and knows you are not always going to want to do stuff.

    I hope this makes sense

    Sorry for being a Pessimist

    Feeling a little bit better today, not pain wise but I'm not as weepy.  Think I must have had a touch of PMT as I woke up this morning and my bloody Jammie's (excuse the pun) were soaked through.  I hate when my monthly joy (yeah right ha ha) comes through the night.  So today I am not feeling as sad but very, very sore with big bad cramps which I totally hate.

    For the last couple of days my lovely Laptop has been deciding it doesn't want to play with me, maybe it is feeling the pain of fibro and PMT too lol.

    I must apologise for being so pessimistic yesterday, I know that is not going to help anyone but at the end of the day "I am only me, It's the only thing I can be".  I hate when I'm typing and cursor decides to move itself up the page to halfway through a sentence.

    I would like to thank everyone for their continuing support especially Healing The Pain.  It's the support that gets me through the bad days.  Also my Hubby and my awesome friend V.  Without yous I would be totally lost.

    Today I feel slightly lost for words.  I have always found the more down I am the better I can write.  I used to write poetry and that was the same, haven't wrote poems for years and think I should probably start again.  Maybe that will be next a poetry page on my blog, containing all my old poems and any new ones I may or may not write.  What do you guys think?

    My back today as usual is not a happy little spine and it doesn't like my monthly gift as it makes it very unhappy and in more pain.  If I have to live with this stupid pain I need to find a way to make my life easier use the pain to be creative etc.

    Can't think of anything more.  Feel I am rambling a bit.

    So for now, goodbye and thanks for listening xxx

    Tuesday, 17 April 2012

    Finding it very hard

    I feel I must apologise to you all I started this blog and originally it was supposed to be for me to note down my day to day a bit like a diary for myself to remember and in the hope that it would help others but I failed, I did it for what 3 days?  Then it became too much, too much of a commitment another thing I had to do and because for the last couple of weeks I have been feeling really sore, ill and to be honest just generally shitty I didn't write things down during the time in which I probably should have I buried myself playing online games and generally just trying to take my mind off things and forget.

    I am just so tired - Tired of trying, tired of fighting, tired of being in pain, tired of being sad, tired of getting nowhere, tired of not living but merely existing.  I feel so low but I don't think I have told anyone at all just how low.  As I write my eyes fill with tears but I cannot let myself cry because how do I explain to my 4 year old why I am crying why I feel so so sad.

    I went to the physio yesterday which the rheumatologist referred my to because of degenerative spinal wear and tear, this was instead of just giving me more medication.  So after explaining all the problems/illnesses eg the thing with my back which I was there for (should she not have known that?) the fibro, the joint hypermobility etc she told me there was basically nothing they could do for me gave me a few exercises and told me if I want to contact them again I have to during the week beginning 28th May otherwise they will assume all is well and discharge me.  What is the point?  All the doctors and other medical "professionals" are doing is passing the buck from one person to another and none of them are actually willing to help me.  She asked if they had gave me any meds yeah Amytriptaline, has it helped at all she asked.  Well, No it hasn't and they refuse to give me anything else because physio was supposed to help me.  What the hell am I supposed to do.  I can't live like this.  My depression is worse, I don't want to leave the house, I can't take my daughter to nursery.  I am the one that has to like in absolute agony every day and no-one seems to care.  Maybe I should stop being so brave, so resilient, so strong.  Maybe then they would see, actually do something.

    I know myself I can't give up, I can't let the illnesses win.  But I feel they along with the depression I have suffered all my life due to being sexually abused and everything else I have had to endure have taken everything from me.

    I just want to be happy, I don't want a fancy life and fancy things.  I just want to be normal and not feel like this.  Why won't anyone help me.

    All my life I try my hardest, I am nice to people.  I don't speak my opinions for fear of upsetting others.  I am a nice person.  What have I done to deserve all this.  Why is it always me?  Why can't I just get a break for once.

    As the tears now fall freely I wonder will I ever be free to be happy, to be able to enjoy life.  I hate this.  I do not have a life I have an existence and I am not living, I am keeping myself from dying.  Yet I dying inside.  In my life I have coped with so much and suffered through so much but this - I believe this is going to be what finally breaks me.  It is hard to comprehend that this is what it will be like for the rest of my existence.

    I am sorry that this is depressing and "feeling sorry for myself" but I needed to vent.

    I hope you are all well and coping better than me xxx