Is this all there is; pain day and night and no life?

I want to shout to the heavens that I have had enough of this da***** Lupus. I am fed up of living with excrutiating pain in my hands and arms that make daily living an almost impossibility. 'They' are now talking about carers and attendance allowance and multi-disciplinary meetings to help me to take care of myself for God's sake!! There is no light at the end of this tunnel.

So, I shall have a cry of self pity, pour a glass of wine, light a cigarette and to hell with it all. Tomorrow may be a better day.

Hope you are all in a better place than me.

Love to you all out there that have so far saved my sanity.

13 Replies

  • Oh how awful for you, it must make you feel dreadful when people are discussing things that you obviously don't want to happen.

    I really hope the glass of wine and cigarette helps, at least to help you to relax a little.

    Hopefully the powers that be are also discussing your pain management to alleviate the pain that appears to be constant.

    All the best and I hope your weekend improves, sometimes when things seem to be at there absolute worst they turn around and become better.

    Slowmo x

  • Dear Slowmo

    The wine, more than one glass, did help on the relaxed front. This coming Tuesday is the day of the multidisciplinary thingy, so hope things improve as one of the folk to be seen is a pharmacist, so maybe he can help to sort out control of the pain.

    I really do appreciate your support and thank you so much for taking the time to help.

    Kind regards, Kath

  • Oh I am so sorry, the hardest part of lupus is coming to terms with the fact that your brain remembers doing things differently but your body can only go so far. The pain is excruciating and I know I would not have got through this without the support of my family, my mother especially.

    If it helps why not think of what they are doing as part if your support network. You are obviously struggling otherwise it would not be on the table, we all know how tight the nhs is. Remember if you try it and it helps it will relieve some of the stress and pressure. If you try it and don't like it you have the power to make it stop. My friend is a carer and some of the things she does you can see bring peace and relief to the people she is caring for. (Must admit they are not all good, so don't accept the first person thinking you have no choice)

    Try not to be so angry, I know it's hard I have been there try and see if anything helps before you say no completely

    Stay strong xx

  • Dear Twist,

    Thank you so much for your kind words, I will bear your advice in mind if it comes to a carer. You are right, I am so, so angry. Fifteen months ago I was physically fit and throwing around 25kg sacks of animal feed, now I can't even lift a kettle single handed. I am so glad you have the support of your mother, I am completely on my own in this apart from the lovely folk on this site and I can only thank you, so vry much, for taking the time to help me.

    Kind regards, Kath

  • You are welcome Kath, It sounds as if you have some support in your employees. Things like this can change us and make us realise the important things and our life. All the best for your appointment xx

  • Reading your post made me cry its exactly how I feel my life feels over and my friends just don't understand I have turned into a real grump and I'm not copin I have a fab mam and boyfriend and if u have anyone u can turn to please do even if u jst keep venting on here I am fed up if complaining to my mam but if I didn't tell her how bad I was I think is go insane hope things get better support may be the best thing tht ever happened as it may help u get some spoons back to have a bit of a life :)

  • ZoeZoe, I am so very sorry my post upset you, Cheer up. You have Mum and boyfriend who care so much for you and I am sure will help you through the dark times that we all have.

    After all your support, I have hopes the multidisciplinary thingy on Tuesday may be of help, here's hoping.

    What would we do without this site??

    Kindest regards


  • Hi there Kath. I'm so sorry you are in the position that you are. I remember only too well being there myself not so long ago. I think what really did it for me was when I was advised to apply for DLA and was granted it straight away with no argument and on the highest level for mobility as well. Then I had a home assessment by Occupational Therapists and ended up with supports for my armchair, a Zimmer type thing to go round the loo so I could lever myself up and a bed lever so I can hoist myself up in the morning. All of this was well meant but it left me feeling out of control and overwhelmed. It is hard to come to terms with our condition but always remember there are lots of us out here who really know what you're going through and are there to offer support. I hope things pick up.

  • Dear Stephen

    Many thanks indeed for your post, you have outlined what happened to you when these folk got involved and like you I dread it and feel out of control. I have been advised to apply for attendance allowance not DLA. Any ideas what the difference is in terms of criteria that they apply?

    So very many thanks for your support I really do appreciate it and hope you are coping well now with your aids.

    Kind regards


  • I am feeling exactly like you at the moment Kath and that's why I joined this forum, to look for some support from people who understand what its like to be in constant pain and feeling like you've been run over by a large bus! I lost my job which I loved and am now having to use a walking stick quite frequently because of the pain in my spine. Three years ago I used to swim, walk, work ,was a carer for my Mum but now the whole world has changed. Its hard to adjust but I think I'm getting there and if I want to feel sorry for myself for a little while,and swear at how things have turned out, then I do. And then the next day, I feel a little better.

  • Lillyanne,

    I am so glad that I don't feel alone because of this site and folk like you that take the time to offer support. I am sorry that you lost your job, 'they' are advising me to give up work too, but being self-employed and running a kennel and cattery I am finding it very hard to get my head round this! I have worked seven days a week for the last twelve years to build this business and have lovely staff that are taking up the slack. Now I am faced with life changing decisions that I don't want to take, ah well, maybe the dreaded L**** will take care of this for me.

    I am so pleased that I am not alone in feeling sorry for myself and that maybe I am not giving in to it at all.

    Thank you for your support and for being so honest.

    Kindest regards


  • That's ok Kath, its nice to know I'm not alone too, because sometimes it feels like it. I didn't want to give up my job and fought for twelve months to try and keep it but because I worked with disabled adults, 'they' deemed me as unfit because of lifting etc. I think that was my lowest point because just three months earlier, I had also lost my Mum. Its been a hard slog to try and feel more positive but I realised I have to be or I will just go back to crying on a daily basis, and that's not a nice place to be. Try and remember that we're not alone and that there are people who will understand how you're feeling and can sympathise. We all need a bit of sympathy and understanding sometimes :) As for claiming attendance allowance, I think you have to be over 65 but I'm not 100% sure on that (I know my mum had to claim it because she was over 65 and could not claim dla).

  • its sad to see you suffering, there might be solutions to your health issue, am i allowed to post it here,, would it be soliciting?

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