Need a fibro huggle today !!!

Hi everyone I know its supposed to be happy chirpy Friday.....BUT I am not feeling it.....

Today I am very tearful,my life has gone from me being in control of it ! To it taking over.....By IT I mean my health ....

Last june I could drive,walk do shopping go swimming do my crystal work ,and anything else I needed to do....and was looking forward to my daughter getting married. Now I can't do any of those things........................ I can't even walk my daughter down the Isle!! and her reception is up a flight of stairs.............. I was going to stay at the Hotel! Now I have to be lifted into the car,and have my legs lifted into bed as I cant lift my foot an inch on one side and only a little on other one. It really hit me last night when my daughter said Mum you can't come to the registry office on your scooter,as only allowed to drop off the groom and bridesmaids as on a double yellow line on busy throughfare.

The other reason for the tears and anger is,I have to be on my own for 2 weeks as my husband has to go into respite for PTSD . The council offered us 3 half hr visits between morning and bed time. I have tried to set up help but it is impossible 24 hrs. My Daughter said she will stay over ,but bewarner you won't like me in the mornings as I am very grumpy!! :-(

It all came to a head today as my OH bless him is trying to help but everything looks wrong to me where I would have my nice bits and bobs out ie crystals photo's etc he has made it easier by putting it all away.....and now I feel like I am losing site of me....My clothes consist of PJ's unless we go out but that is rare...easier for him to go alone and me to stay in bed "where I am safe "....I have also had to have my hair cut,............It was down to my waist nearly and now it is a pixie cut....so still not me.....I feel as though the real me is disappearing fast!!

My daughter said well just think of my friend she is 42 and in a home parallised from bust down etc etc least you are 63 ........

I know I have gone on a bit here and hope I have not depressed anyone that was not my intension <3 I just needed to talk to someone as I am alone in this...my Mum is 87 and I can't burden her with all this she is worried enough that I am so ill !!

Well everyone (((((((((((((((((((((((((( Gentle Hugs )))))))))))))))))))))))))))))))

Hope I soon snap out of this and see the Rainbows again x x x

Love and Light x x

Rainbowdancer x x x

11 Replies

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  • I hope you get better in time for your daughter's wedding, rainbow!

    Love from Moffy x

  • I know things seem bleak right now but you have a lovely family , your OH has done his best to rearrange things temporarily to try to help you before he goes into respite... Your daughter has offered to stay over . So she's grumpy in the mornings.. If you have the half hour care in the morning that could tide you over till you daughter gets up ... Had a drastic haircut recently it took some getting used to but is so much easier to manage....

    I know you feel like you are losing yourself but you haven't it takes time to come to terms with having fibro , you have only been like this since June it's natural to be grieving for the person you used to be... But the you inside is still the same it's just the outer that's gone wrong.... I have had fibro 23 years so I have had plenty of time to feel the anger and sadness and scared about it all , but it will get better, how much I can't say but one day you will feel hey I am not the same but life is still good ... Just different ...

    VG x

  • you can be dropped off at the front of the register office if you need to be,

    they make exceptions for people who need them. but check with the council just to be sure.

    vg has offered some wise words and I couldn't have put it better. enjoy having your daughter to stay, have quality time with her and let the carers do their bit.

    keep in touch,

    sandra. hug (( :) ))

  • I do not have any half hr carers as it did not suit our situation. My daughter works and is staying over night and going into work at nine .She will either get me up or her friend will call in later,Just feel down as I am very independent person usually. Register office said that my Mum in a wheelchair and I can be pushed up from the carpark down the road...It is weird they don't even have a carpark....

    Thanks for your chat x x x

    Rainbow (((( :-) )))))

  • Hi VG I have had fibro and CVFS for 24 years its not the getting used to it its just that I used to get good days and bad but now I cant do anything....I have to be put in and out of bed helped to shower I cannot dress myself either ......I just feel my Dr took all my ailments as Fibro and it now works out they are not.....but he still doesn't know how to put it all right.

    Thanks for answering me tho...My daughter has said if she is grumpy then I have to remember it is her problem not mine and if she is really grumpy for days I will get used to it quicker lol :-)

    I had been able to live with my fibro etc till I could do nothing,just cannot see a light at the end of the tunnel and that makes me very sad x x x

    Rainbow x

  • You are notlosing the old you, she is still there, a new you is emerging though, as yet unformed and still grieving for things the way they were. You will adjust. Fight the good fight lady, take some joy in the tiny things(like kissses and hugs from your fibro friends) and the big things will get better before you notice.

    Blessings this easter.

    Spideyxxxx

  • Sending you big hugs, Rainbow - you've had a lot to adjust to over the past year, plus you don't recognise yourself in the mirror. VG has said things beautifully. Try not to be so hard on yourself. Make a list of what's worrying you and work through it bit by bit - there will be solutions to some things that will hopefully make life easier for you.

    Take care x

  • Try to ask the council for a bit longer calls, especially in the morning. I have 45 mins and that is just enough to get all done. I can get out of bed, unlike you. They make me a cuppa for my tablets and help me to wake up. They wash up, put washing in tumble dryer, take others out and fold. They help showering, lift my legs over bath whilst I sit on a bath board. They wash hair and bottom half. Get clothes out of drawers and help with dressing.

    I too have gone and going through identity crisis. In last 2 year's have gone from a size 10 to verging on size 16. I hate my body. I cant shave my own legs, do my own hair, etc.

    I have also gone from full time to 22 hours.I am hanging onto work as have great managers who have let me change work base, area I can work that I can drive to and helping me to become more enhanced In my role for when I am no longer able to work in the community.

    I understand your frustration as I can't walk or drive far but hopefully we will get through this and hopefully now you have spoken out things may start to improve for you. VG spoke wise words.

    If you need any advice about carers and council eligibility and rights message me as I am a social worker for physical disabilities.

    Take care of yourself.

    Jo

  • Morning Rainbowdancer,

    We find are selves fighting this battle with what they call an invisible illness, well seems pretty visible to me. My sympathy to you I understand where you are coming from - gradually bit by bit we find ourselves being taken over By Fibro . I send gentle hugs (((())) Now today you need to find away to get to the wedding there will be a way . Get a taxi to the door and then your chair can go in surely! Good luck best wishes gentle person xgins

  • Loving thoughts are with you Rainbow.

    I can't add any more to what all my wise Fibro. friends have said above. It takes time to adjust to this illness and one day you will get there and reinvent yourself.

    Be very gentle with yourself. Cry if you feel like it and get it all out of your system. Punch a pillow if you have the energy!

    Comforting hugs. Saskia XX

  • Hi every one the registry office is 40 miles away and My OH was going to drive the bride and myself to it and then go and park. Now my legs don't go at all he will have to build my scooter and help me !! but also be by my daughters side to walk her down the Isle,On top of that we have my mother who is 87 in a chair ( We have a nurse driving her as she is in care and needs a nurse with her. she would not miss it for the world x ) who is a whitness:

    I guess I just lost it the other day because I thought I could walk again by now.....then had a nasty fall and broke my ribs and Physio said I won't be walking by june due to this fall and my other problems. :-(

    I had a shop and healing centre 6 years ago and ran Meditation groups too,and although I still meditate when I can It now seems so long ago.

    Anyway I do thank you all for your kind words x :-) I am going to try the holistic way again as that worked before,and the Dr's way just is not working x

    Love and Light

    Rainbow x x

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