Is there anybody out there?

I think I'm a victim of my own stubborn stupidity. Feels like I've run out of options. On the 1 hand, lie to the people closest, lie to medics about the amount of support I have. I'm so scared of becoming totally unable to do anything for myself. Then I have no choice, total loss of personal privacy,. I need my own space, my own home, don't come too close, need help, go away, need help. Don't judge me, you don't really know, please see an independent worth and entitled respect, space. Only I'm not. I'm on oxygen, but it doesn't feel enough, breathing is getting tougher especially if I try to move about. You know the feeling, like you're about to get that hand on your shoulder, caught you, you're a fraud and under arrest. Your crime? You can't look after yourself. Sentenced to humiliating invasion of space for the rest of your life!! You have no secrets.

31 Replies

  • oh tulips I feel for you! I know exactly where you are coming from, I truly do.

    I have direct payments now that allows me to cherry pick who comes into my home, when, and what they do. - this includes taking me out for app'ts and nice things. I also have meals prepared and showers - I wear my swimsuit.

    I have to pay towards part of the cost and 35p a mile for her petrol.

    I can ask and agree tasks & use of the hours between us.

    Importantly - I am not "dependant" on this help, I am increasing my independance. "enabled" to take back control of my life, doing what I want to and when with my choice of people.

    it's a big step - first you have to accept and admit you need help;

    then realise you deserve help - you are worth it!

    thirdly, ask for help, and stick to your guns!

    please consider it, pm me if you want to.


    hamble :)

  • Thank you for fast reply. Head not clear, if I don't make sense. I can feel your empathy. I am calmer. I have always been completely independent but I'm losing it, mucking up finances. I don't want to tell my girls, their lives, they need me to appear in charge, worry over me now would 'cause too much stress. I owe them that. Every time imakre a mistake it makes me feel more and more desperate. I can't see clear way out of this. I know that both physically and mentally getting worse and gathering pace faster and faster. Why can't I manage? I always have. Helped many others. I'm only 52. I don't feel old. I cannot see me managing the personal allowance that you have, everything I touch goes wrong. Tulip

  • I don't manage the money, other than the petrol money. I have a "managed" account.

  • Thank you for the info. I will look into it.

  • Hi tulips123

    I am so sorry to read that you are in emotional turmoil over everything that is happening to you and affecting your quality of life. I am sitting here with tears in my eyes, as I understand completely what you are saying!

    I had been in denial for a long time about my ability to care for myself and my wife (she has MS), and I kept saying that I was fine and doing great. However, nothing could be further from the truth. I had a visitor from Occupational Health last week and now they are putting a 'wall chair' in my shower so I can sit down when I cannot stand in the shower anymore. They are placing a frame around one of my toilets so I can get up off the loo without groaning in agony. They are doing so many things that are making me feel (not useless) but inept, incapable and what feels like 'loss of privacy' and very intrusive!

    So, we are both in the same boat (so to speak), the real issue is what are we going to do about it? I have made up my mind. I am going to take the help that is being afforded to me, I understand that I 'may possibly' lose some dignity and privacy'. However, I love my family so much that I want to keep myself safe for them. I can only imagine how they would feel if they knew I was not being honest about my medical problems?

    So, I implore you to do the same please. Think of all the people in your life who you personally mean so much too. Do not define yourself by what help you need and the dignity you may lose, but by the love and warmth of those around you who love you so much ... You truly sound such a wonderful and beautiful person ... Enjoy your life ...

    All my hopes and dreams for you

    Ken x

  • Thank you very much, empathy coming in loud and clear. I feel much calmer this morning, though it feels as if I've been doing lot of fighting/running in my sleep hence horrendous body ache. I promise I will use the peace of a quiet sunny Sunday to think it over. Many thanks. X

  • Hi tulips123

    I am really happy to read that you feel a bit better today, I want to wish you all the best of luck my friend.

    Take care

    Ken x

  • Appreciate the kindness, thank you.

  • Hi Author I wish I could get a occupational heath to my home as seen them at hospital appointment and they gave me supports for my joints but they don't stop me falling hope you have a good day fibro10

  • If you ask them it can be arranged? I asked them to come because of my wife having MS. However, they said I was experiencing just as many problems as she was! Some of the gear they think I should have is coming tomorrow i.e. toilet frame and seat and wall chair for the shower.

    I want to wish you all the best of luck with getting somebody to come out to you and doing an assessment.


  • hi Tulips, I do understand where you are coming from and I understand about the privacy issues needing help. I hate asking for help as it feels you are losing control of your own life bit by bit. I try to keep a lot hidden from my family as I don't want them to worry too much. I am 55 and live alone. My dad is 87 and my brother is 61 and they live about 6 miles away. I have had care call installed as I do have falls and obviously if anything happened to me my next door neighbour is 1st call out. Like you I need help but I find it hard to ask/accept it. I hope you are feeling a little better soon and that the quality of life does get better for you.


    Belinda xx

  • Do you feel ageing premature in your 50+? I think that is part of it. Paradox, feel like throwing a tantrum 'cause its not fair! Boo hoo! Much calmer this morning, looks like I have touched a cord in people on this site today. Appreciate the support v. much, thank you. Tulip xx

  • Hmm, yes you have. Seems you're not alone. It seems like me, you're a "control freak". Fiercely independent in other words. Just take things slowly and think them through and hopefully spend less time managing things going wrong and have more energy for things going right. :P Hugs

  • Agree on the control freak.lifetime of being in charge/control organising everything, feel good thing from being the 'go to' person. X

  • Direct payments can really help you feel in control of the help you get. Someone 'a broker' will go through with you- what you need, how much money you can have, they'll look into how much things cost, they can do the maths for you! Then you can choose the agency and usually the right person to help you, or even employ a friend, and the broker will help you organise it all. That's their job and they are a great resource. You stay in control. You choose who, when and what help you want. You can have just a bit or as much as you're entitled to. I used to work with direct payments in social services. I can help. Now I work setting it up in the nhs. Pm me if you want advice on this. It can really help you feel more in control.

  • Def. worth looking at, hamble99b has suggested it as well. How do you private message? Struggled to navigate the site since it was updated.

  • Hello Tulip

    Can't really offer any concrete help, but electronic support and things can improve. I once had to ask my 5 year old son to get me to the bathroom and did not think I could sink much lower so the only way was up and I have improved. Choose what you can do and accept help I can't do everything I want or need to do but things are different.


  • Thank you, support much appreciated Tulip x

  • Hello Tulip,

    I've been there too, at 30 years old now 37 but I can honestly say hand on heart that when I managed to accept the help it was a relief and it gave me time to concentrate on looking after myself, pacing & slowly introduce exercise. In time this helped me to have a good 2 & a half years optimum health where I was not back feeling like a healthy person obviously but in a situation where by I was managing my condition & had a reasonable quality of life. I have since come up against problems once again and I'm just about to do it second time around with direct payments.

    So while it may feel like it is negative you may be surprised to the benefits in the long run.

    Sending best wishes as always

    Emma :)

    FibroAction Administrator

  • Thank you Emma. You are def.a shining star with the work you do. Im going to look at direct payment. I think it may well take some of the pressure off. Dawn x

  • No Problems, I enjoy the voluntary work I do and do not expect any 'Thank You's' but it's nice to hear the site is helping so much :)

  • Good morning; Happy mothers day to all the ladies out there today. Well tulip Isure do understand what your saying.I feel the same wsu as do a lot of others I see.Today is mothers day here and my daughter and grandkids want to take me out to celebrate. The truth is I'd rather stay home and be safe just in case because I've been having major flare up all weekend. Today I have my tmj acting up starting as of yesterday low blood pressure and it feels like my hand is totally dead do tight on the left side my fingernails actually look more pale than usual.I'm just waiting for this to go away for something elsewhere to flare up I always seem to think OK this has to stop I didn't have this last week.I always say this to myself when a new flare up appears.. I believe its my way to cope so I can pretend that things are not so bad when really they seem to just suck!!Being in control is a major part of who I am so not being able to do all the things I once did with such ease is just terrible but I don't want to admit I have no control over this and day by day it just continues to throw me a few curve balls. I don't know what to do about today going out and I sure am not wanting to disappoint my children.I have learned to cover it to some degree so far but can't continue this lie.Like you tulip I don't want my kids to worry but I know I need help.

    Catch 22..should be the name of this syndrome not Fibromyalgia. Well enough ranting about me.That's my weekend in a nutshell and what to do I'm still confused

    I wish you have a day ahead and I certainly understand you and if you need an ear anytime I'm here I'm just a keypad away Take care of you.

    Hugs Barb.

  • Hi sweetdreams1234 Know just what u mean I went out yesterday to a little girls communion made all kinds of excuses for not to go in the end after being nagged at by family. got to say I enjoyed it seeing a lot of people who I have not seen in a long time .and had a few glasses of wine today in a lot of pain but need to get myself out moor because the pains there if I stay in or go out so I hope you do go an have a nice time fibro10

  • Thanx Barb, v. much. I've slept most this afternoon, I hope you have managed to enjoy Mothers Day. Recover tomorrow. Tulip xx

  • Barb - see reply below, got lost. Tulip

  • Barb, keep getting lost, replies below. Tulip thanx x

  • I'm so very sorry sweetheart!!! Praying you feel better!!! Are you on an anti-depressant? If not look into it, if you are maybe it's no longer working for you. I feel for you, as I live alone and my only daughter lives 600 miles away. I haven't seen her in 3 year's. It kills me. Big hug's for you!!!! xxxx Mitzi

  • Always appreciate prayer support thank you. You're right though, whatever you do pain is always there too. I'm pretty much housebound now, lack of positive stimulus doesn't help either. Tulip xx

  • P.s. Mitzi, gp is looking at changing anti-dep. Currently using Amitriptyline and Duloxetine. T.

  • It is really difficult when you're always in pain.I'm visiting my sons and grandchildren and I'll need at least 2 days to recover! But I've decided that that is my choice and the happiness of family outweighs the misery of my pain, but I'm lucky that I can still drive and I appreciate that. As someone said , being in chronic pain is hard work, being positive about it is even harder. Be kind to yourself and I'm sending a gentle prayer to you too.

  • Thank you Maggie. There is always support here, feel much calmer. See what this week brings. Tulip xx

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