Waiting and feeling down

Hi everyone, some of you may remember that I was diagnosed with a tumour at the bottom of my spine after months of being treated with sciatica, well 2 weeks on Tuesday we go to see the neurologist, the time is going in and I'm getting so nervous while at the same time will be so glad to get back to normal. I hate having to depend on someone for help with showering , dressing, making meals for me, and not being able to do my own housework especially with Christmas coming , and all the Christmas cleaning we ladies subject ourselves to. And I so miss just getting up and going out when I please, I'm on so much medication that there is no way I cld go out on my own so have to wait until the weekend when my husband is there or depend on friends during the week if they are available . I am just coming to the end of my SSP and in the process of applying for ESA and I spent over an hour on the phone to Dept of work and pensions the other day and needed up in tears on the phone and cried for the rest of the day after that. The lady was lovely but I feel as though I'm begging for money. She told me I should also apply for PIP and that my cousin who comes over every day for me shld be getting carers allowance . I have been nursing for almost 35 years and have gone from being in charge of a very busy unit and 10 staff to sitting looking at four walls and I'm finding this all so overwhelming , the uncertainty of knowing whether I will work again, christmas is coming and no wages , and having to apply for all these things . I'm so sorry for moaning everyone and if you have read this far then thank you, I don't want to moan to my husband too much as he is going through this the same as me and I know he is worrying about what will happen at the hospital so it is so lovely to have this board to come to and express my feelings knowing that someone is listening. Thank you so much , xxx

5 Replies

  • Hello Mogi, Yes remember your tumour well. Good yo hear you are seeing someone although another 2 weeks still seems an age away.

    Rant away - we all do!

    NEVER feel you are begging for benefits. ESA is there as a safety net to jelp in times of chronic sickness or disability. DWP are making it hard for all of us to claim anything but neve give up.

    I hope the nice person at DWP told you about things like criteria for qualifying?How long you have been 'sick' and how log you expect it to last?

    Don't forget too there are 2 grups for ESA. The WRAG is where you are expected to get bettter and will be 'envouraged' to look for work. But you will find all this out before applying.

    Carers allowance also depends on what rate you are awarded for PIP. You need to get the enhance rate to qualify.

    Sorry if all this sounds harsh = it is but I won't go down that road of my own feelings.

    Cleaning your house for Christmas? Christmas is about th people and sharing not how tidy you are or if the cushions have had an extra plump. Pacing yourself to do as and when will keep pain to a certain level. Push and you will hit flair up. Or ignore it all and have a lovely time! I do.

    Hope you can pick your way through some of yhis and a;ways here for any questions


    Pat x

  • Hi, Mogi52

    Read through your entries...just want to wish you all the very best with your op. I see you're having it done in the Southern.... I've had 4 back operations in Gartnavel, Glasgow, over the last few years so totally understand the anxiety you are feeling as you wait. Living, or should I say "existing" with constant, excruciating pain is the loneliest feeling in the world. I have other serious medical problems too, but at least now my back pain is at a lower level than it was. Please hang in there...I really hope you don't have to wait too long before admission. Sending love and understanding x

  • Hi Booklover , thank you so much for your reply, you will know yourself every little message makes you feel that wee bit better. I am getting so nervous as the date gets nearer, this sounds silly but it makes it all seem real now , I feel as if I've been living in limbo for the past 8 months or so . Sorry to hear you have medical problems too, any time you want to talk I'm here. You take care and thank you xxx

  • Never feel sorry for how you really feel, this is THE place to be as raw and blunt as you need to be, because unfortunately there is always someone who has experienced some of the same.

    Going from being a busy king pin of a family and working many hours, doing a job that makes you you, to being stuck and dependant on others has to have an impact on you physically due to your limitations and mentally as your whole identity is in the balance.

    Let's not rush to greet trouble, my grans saying but defiantly one that fits. Keep with the here and now. Keep yourself as operation fit as possible. Eat well drink lots etc etc keep anything you can as mobile as you can. That is your sole job just now.

    When the time comes, be a good patient. If they insist you do x , have a go but if it doesn't happen tell them! As many times as it takes off them to understand. We don't all heal the same. I took a whole year longer than the books say to regain functional power, by then I was off to surgery again.

    The benefits agency are not giving you money out of the good of their own hearts believe me, you will need letters and copies of letters etc. make sure you keep a copy of everything you send them. They are very good at losing things.

    In all honesty if their web pages say recovery is likely they will put you in work related activity group. Don't panic. They should have a disability support officer in the job centre who will decide to call you at home or see you once a month to appease the powers that be.

    PIP is a new benefit to replaced a DLA. You have to have been affected a minimum of 6 months and likely to be affected for 6 months. It looks at a totally different criteria. You may qualify for enhanced just now and maybe post surgery for a while, they may only give it for a short time as you are having surgery to help rectify your problem. Please be as honest as you can, blunt and consise. Again take copies of everything you send and receive.

    I had enforced reset of my life following RTA with a brain injury as well as spinal injuries. I will not lie. It took me longer to come to terms with the new me than get to grips with physical limitations.

    Look after yourself and allow others to care for you for a while. Use it as a tool to improve understanding of what matters to the client, use it to help others going into care sector by of freeing to tell students what it's like on the other side. I speak to psycology and medical students. I feel it's a positive from a negative :)

  • Thankyou Danslatete for your reply , I was laughing at you saying be a good patient, us nurses are renowned I know for not being good patients . But I was in the hospitsl for four weeks and I was a very good patient but will keep doing what you say , do as I'm told as I know they are the bosses not me, my mood has lifted a little bit but it's this achy pain all over that gets me down, I waken up in the nite with my whole body aching , and feel as if my feet are on fire , makes me worry and wonder what this little thing inside me is getting up to, is it growing while we wait to go to hospital. Who knows , but 2 weeks today is consulatstion day so getting there , thank you so much for your reply , I really appreciate it , hope you have a good day , Morag x

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