Lost

Ive not written a blog before, but with the ever growing feelings of loss and confusion relating to my life I thought that I would give it a go.

Last year past quickly in a daze of confusion and fatigue, I spent most of my time in bed, tired, confused and in chronic pain...I can honestly say that I only had about 3 to 4 weeks where I felt okay.

With each passing year (11 years living with Fibro, coming up to 12) it seems that more of my life has been whittled away from me, each flare up has left me a little less able until I am now at a point where I dont recognise myself, it may sound daft but I just dont know where I have gone!

We define ourselves by our jobs, hobbies, interests, we are defined by our friends and the company we keep, our children, families etc...Fibro (and a degenerative spinal condition) has taken so much away from me that I find myself defining myself as ill/disabled etc...Fibro now defines who I am and I do not like it.

All this has crept up on me, I feel like Ive blinked and my old self has disappeared without me even noticing that it was happening.

I live in my night clothes, a good week is when I am able to shower each day, my achievements are brushing my hair, putting a bit of make up on, my world has become so small, I feel trapped.

Its a New year, I hope I can get back some of the things I have lost, it feels like a mammoth task, I dont know where to begin, Im even having trouble remembering the old me...do I reinvent / adapt/ accept change/ forget the old me or do I hold on and try to remember who I was and grab back what I can....The big question is, will Fibro let me?

A miserable first blog, hoping that 2013 is a positive year giving opportunity for happier upbeat moments/achievements to write about.

Love and gentle hugs to all,

BethXXX

20 Replies

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  • Well Beth, Fibro or not we are reinventing ourselves all the time, I mean can you remember how you were as a wee girl, a teenager or whatever, My advice to you is take each day at a time and write down a wee thing that you are going to achieve everyday like , brush your hair or even put on some lippy. Personally when I feel like YUCK!!!!!!!, I fill the sink with cold water and splash the water over my face and with wet hands run my hands over my head and hair across my shoulders and wipe all the negativity away. When that is done you will feel refreshed and a wee bit more clear minded.

    The answer to the big question is not will fibro let me it is will I let Fibro stop me.

    take care

    xxxx

  • Thank you for your comment... I agree, we do evolve/reinvent ourselves throughout our lives...Have been thinking about keeping note of all the positives that happen each day, each achievement no matter how small.

    Im a keen gardener/lover of the outdoors, sure spring will bring new hope, energy and ideas, winter can be such a still and reflective time, its needed, nature is clever, it has so much to teach us.

    Gentle hugs, BethXXX

  • Hiya Beth,

    I actually feel that, although it may not seem so at the moment, you have moved on in a big way. you have reached a major point and turned the corner in a positive way?

    How?

    by reaching out here

    by noticing where you are

    by being ready to build on your new life.

    Your mind has kept you safe, allowing all your energy to be spent on getting you to this point doing the bare basics for survival - eat sleep wash.

    Now you're becoming aware of things and ready to change, pace yourself and be gentle.

    It is devastating to realise that we've lost our old self and often causes a lot of grief,

    I had to mourn the old me, the dreams and future plans.

    Inside, you are still you. take small steps and good luck.

    regards,

    sandra.

  • Thank you for your reply Sandra.

    You are right...this last year has seen so much stripped away from me, Ive held on tight but realise that I should just let go, holding on to the old, pre fibro days has taken a lot of energy and distracted me from what matters, the nurturing of myself and learning to live as I am now.

    Yes a corner has been turned and yes it has hurt... Its been amazing how much my mind has recalled, memories from way back, it puzzled me, but it was part of the grieving process/the letting go. It has left me feeling exposed but now is the time to re clothe myself in clothing more suited to the me that is now...hope that makes sense,LOL!

    I am still me but without the trappings of old dreams/old expectations etc.

    Kindest regards and thanks,

    Beth

  • Hi beth. I can deff empathise with your very elloquent blog; as im sure will many others on here. This horrible condition slowly chips away at us limiting everything from our work, family and social life to our personalities and ability to function in an everyday capacity. Somewhere along the way we loose the person we once were, which can have a seious negative impact on our confidence, self esteem and belief in ourselves.

    The only advice I can give you is in orderto 'survive' we need to adapt to the changed circumstances we find ourselves in. I have had to let go of the old me and the things she used to do(work full-time, dance salsa & bellydance, exercise, walk/run without pain, socialise with friends at a minutes notice etc) greive for her and then move on by developing a new me.

    One who trys to reduce stress or change her reaction to stressful situations and events , eat a bit healthier, practice relaxation techniques, take pride in small everyday victories over fibro (getting washed, dressed, going to work, walking to local shop etc) ask for and accept help, delegate tasks/chore to family & work collegues, take up new manageable hobbies, watch funny uplifting movies, read books, listen to music, draw(very badly) and take joy in the small pleasures of life( like sitting outside on a warm day, playing with grandchildren, spending time with family & friends etc)

    Sadly theres no quick fix and each of us will proceed through the grieving process at our own pace and in our own way. I wish you sucess as you strive to come to terms with the changes in your life and get to grips with fibro

    Gentle (((((hugs)))))

    Dixie

  • Dear Dixie,

    Thanks for your reply.

    Think this last year has been all about the grieving process, it has been a difficult one. I have realised that me being me ( awkward ) it has taken a complete stripping away, layer by layer of all the old me/memories/dreams/expectations... and it has left me feeling exposed, vulnerable and lost.

    But, thanks to yours and every ones comments, I am now feeling positive and ready for my new life with Fibro...

    Gentle (((((hugs)))))

    Beth

  • Thank you bethy for writing this blog , i can relate to every single word.

    I was only saying an hour ago to my husband that I feel I no longer have an identity ! The person who I was has gone, Even down to the clothes I wear( or no longer wear ) its the little things that can mean the most , Again to know you not alone really does make a difference !

    Thank you again hope your 1st blog is the start of many xxx

  • Thank you for your comment/kind words.

    I am so pleased that I took time to write down my thoughts, your reply and everyone else's has opened my eyes, making me more aware of the impact that Fibro has on our lives and given me an understanding of the grieving process that everyone with a chronic illness has to face.

    Knowing I am not alone has helped.

    Gentle hugs

    BethXXX

  • i can relate to this blog. i was only diagnosed in 2012 and due to the fibro and osteoarthritis i have had to give up work. i live alone but i have a fantastic next door neighbour who will help me. I am a carer for my dad who lives about 6 miles from me so that is what makes me geet out of bed as i visit him every day. i certainly do not know where the old me has gone, when i worked i spent the working days in a suit however now i live in jeans and jumper. the restrictions this horrible fibro has put on me is horrible. living alone i do not have someone else to help with the bills - my mortgage etc etc. i am now on benefits and oh how different that is to when i was working. i will not let this fibro beat me though i will stay positive (with a few blips) you certainly find out who your friends are or not but i have to look after me you never know one day there may be a cure - we can live in hope xx

  • Thank you for your comment.

    All the comments made in reply to my words have been so helpful.

    I am lucky in that I have a partner, two sons and pets too numerous to mention...must be hard for you, but you sound positive and upbeat, not the easiest when living with Fibro.

    Its been a long time since I worked, 18 years, my youngest son has Aspergers, he took a lot of looking after, still does at times(!), I miss work, always expected to go back, but the Fibro and spinal condition prevented me...bit of a shock not being able to work.

    True about friends and unfortunately some relatives...I used to think that it was me that was the problem but it is their inability to cope with the Fibro and the impact its had upon me, sad.

    Like you I'm hoping for a cure, in the mean time i will keep plodding on.

    Best of luck.

    Gentle hugs,

    BethX

  • I have tremendous empathy for everyone who has written here Yes we do have to re invent ourselves. We have to recognise that life has changed for good or bad and build on it. Stay positive learn to cope with the pain and inconvience of Fibro and above all retain a sence of humor. :) it helps conquer the pain :) xgins

  • Thanks for the comment Gins.

    Reading all the comments has helped a lot. True, life has changed, its a case of learning to adapt and live with the changes, its not until you are able to let go of the old patterns and ways of life that any sense can be made of the changes that Fibro makes to our lives.

    I certainly feel more positive about the future.

    Gentle hugs,

    BethX

  • Well you have made a good start to the new you with this blog. Let your blog define your new start and let us all help with building your self back to who your recognise. I find hobbies do indeed help me to feel semi normal and there are a lot of hobbies that can be done with little effort if you want any idears I am your girl.

    Little steps and lots of encouragement and massive things can be achieved. ten years ago I could not lift a kettle to make a cuppa without having to have a rest after and now although my life is still very limited and I have very bad periods I also have a life.

    Bless you and keep blogging as that also does help bit like a diary.

    Hugs Elaine xx

  • Thanks Elaine.

    Reading all the comments has helped, feel a definite change occurring

    I am hobby mad at the moment, always trying something new. Think that I am going to give writing a go, strange how speaking can be so difficult for someone with Fibro when writing flows (all be it slowly) so smoothly...another quirk of Fibro.

    Gentle hugs and thanks,

    BethXXX

  • Hi Bethy so pleased for the write up it is your first step to realise you are not totally alone. With all the pain etc. The worse thing I FIND IS MY MEMORY still not sure if it is the fibro or all the drugs I am on. A friend of many years told me how much I have changed in the last year! I did not ask how do you mean as I already knew. Socializing - entertaining - being able to complete a full conversation - clumsy - forgetting how to do things that I done so many times before. To the point I was tested for alzheimers. I have lived alone for many years. Even to the point. My son and his family who live a distance and daughter lives abroad come and see me - I do love them but really in my heart would prefer them not to come. To which is very sad. It is enough to cope daily. I give myself a task each day no matter how small it may be. One tip is have a kettle in your bedroom and the necessities to make a hot drink. A friend of mine laughed and said you only need as small fridge and micro then you will have a proper bedsit I took it in the wasy it was meant. Wear Kaftans then anyone coming to door they do not realise whether I have got out of bed or been up for ages lol.. TV and computer also in bedroom. All this helps when bad times come which are often. Its definitely a case of retraining ourselfs. Hang in their and try not to do too much when you have a good day. xox

  • Thanks for the tips and comment.

    Like you the memory thing drives me bonkers and losing words as I am speaking etc Its all very scary, taken a lot of getting used to.

    Ive taken to wearing lounging trousers, the sort worn for yoga, look good with a t shirt and okay to sleep/lie in bed in if I need to rest during the day.

    Know what you mean about visitors, with me its the guilt of not being able to make a fuss of them, I used to get so much pleasure from fussing over and looking after friends/relatives...someone pointed out that others are much the same, they get pleasure from making a fuss of those they love so now I sit back and give them a chance to feel what Ive felt in the past.

    Its about letting go of old habits and ways of doing things and finding new ways to cope/live...hard.

    Gentle hugs

    BethXXX

  • I too have just wrote my first blog.... and your writing could be me also, i just cant find the words to explain myself. :(

  • I have just wiped my tears away.

  • Sending you a hug.

    Hope all the comments that people have left have helped you, they certainly helped me.

    Its hard to find the words when it comes to Fibro, think its the lack of understanding, a broken leg or arm is easy to explain but Fibro baffles even the Drs...how can we expect to understand it or the impact it has on us/our families/friends etc. So little is known about the impact of Fibro, sites like this are a life saver, reading peoples comments/blogs goes someway to relieve the isolation, loneliness and make us realise we are not alone.

    I am a great believer in keeping a journal, I use the computer as writing hurts my hands, it helps me when I write about how I feel, the more I write the easier it is to find the words, I'm very slow but who cares!

    Gentle hugs and thanks for your kind words, keep writing,

    BethXXX

  • Oh my goodness was given a new mobile phone hmmmm. Attempting to set it up - otherwords fiddling about with it - I kept putting it down and picking up - Well this was the last resort here I was having this problem to find the last time I picked it up!!!! I was attempting to reset my landline phone - must admit I saw funny side of it. Gee I recon we could make a good cartoon film of all the silly things we do and let all laugh watching it until the end and put a small write up NO THIS IS NOT A LAUGH THIS IS JUST A SMALL IDEA OF WHAT FIBROMYALGIA DOES TO YOU. Then fiollow up with another the seriousness of all the other things we have to get through the day with. I am sure it would be a culture shock for the Spercialists and Doctors. Hugs to you all xox

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