Yesterday my wonderful brother-in-law passed after a long battle with cancer, and I feel guilty and jealous because I want to be dead and it should have been me not him. I'm just a drain on society, having to live on benefits because of my condition,living in a council home which could benefit someone else.

My sister and her husband worked hard all their lives and made plans for their retirement which has all been snatched away. Two nicer people you couldn't wish to meet it's so unfair.

I've had this death wish for as long as I can remember, had all sorts of councelling to no avail, its always there even like now when I'm not depressed. Like the constant pain I just have to manage it everyday. I dont take any medication anymore because of previous overdoses. I cant trust myself to have them in the house. Does anyone else have constant all over body pain with their Ataxia? I know we all experience different things.

19 Replies

  • Hi Vizzio, firstly I would like to extend my sadness to you for the loss of your wonderful brother in law. We all lose someone who we are very close to and are as you say the nicest people. (You know what they say the best go first ) in my case it was my Brother. I myself am in pain day in day out,so I also understand the will to die. I've had two Hostpital addmisstions where I nearly lost my life,and what I try to take from that is I know life can be S..t at times,but it's also valuable. Just think about your Sister now she needs you even if it's just to talk to. I find the easiest way to forget my pain it's to help someone else feel better.( My Son most times) as he finds life difficult. I have no end of health issues to many to go into now. So just focus on your sister and you do deserve to live, it's just the way the cards are dealt so please don't feel guilty,there must be people around you that need you even if it's just a kind word,or peace of mind. Please cheer up and chat on here if you wish. We're all here Haveing a problem called PAIN. Sorry to have gone on so long here's a BIG HUG

  • Thanks Gemini, my kids tell me much the same. I too have a son who needs extra help (living with me at the mo after marriage breakdown) he's undiagnosed Aspergers, I knew from birth there was something different he's now 38yrs. Life sure likes to constantly keep us on our toes. Hope your day is not too painful. xx

  • There it is your SON needs you,Beleive me I can really empathise with you. I have a husband and 3 sons the eldest is fine the middle one is down at heel but my youngest, Ha (43) has a heart of gold and more love than the rest of my family put together,but struggles with life (not money) He keeps me going because I know he needs me,and I need him. I think as long as you've got that it's something to hold onto. Give your Son and your Sister my love and Hugs to you all. Give Love and you'll receive it.

  • You are an angel, my dear. God bless. I am in pain day in day out too, and not knowing when is the end of suffering. Look at the bright side, you are still breathing, when you find yourself discouraged, down, take a deep breath and say thank you God. I am not alone!

  • Hi Yespain, I had to smile at your post this morning,where you say take a deep breath,and say thank you God. One of my problems is Ephesema so it gave me a chuckle. That's one of the best things about posts on here.sometimes you can have a smile. There is one thing I'd like to add to all the people on here suffering chronic pain.There is always someone worse off than you, but when your in pain you can only think about yourself. Now I don't think that's selfish, I just think it's human. So anyone who has a little self pity don't worry we all have at times. BIG HUGS ALL ROUND.

  • I know it must be very hard for you, but your sister is going to need you , so try to hang in there for her , if not for yourself. Best wishes.

  • Thanks for your good wishes

  • Having counselling did nothing for me had it twice once for my father I watched him suffer then my brother took his own life I had counselling it can't stop how you feel inside on my wedding day 4 years ago I hated every minute of it I felt empty and cold the pain of loss killed my marriage I was a pig to live with my wife threw me out and I hate the way I treated her and her family I dunno if I will ever get over it or move on its on my mind all the time

    I know where your coming from and understand it dunno what I'm going to be like when my mother goes I dunno if I will cope at all sometimes I wish I never had no one at all I'm not depressed just dead inside

  • Thanks everyone wishing you all the very best xxx

  • Sad news. Very sorry for you and your sister. Very difficult times for you all. You, your sister and your families need to share love just now to be able to heal. There is bereavement counselling which can guide you through the different stages. I suspect (though I am no expert) that you may be stuck in the grieving process to do with your condition and chronic pain. Please take comfort in knowing that what you think and feel are normal at a time of loss, even if you didn't have chronic pain, you would be thinking and feeling much the same.

    There are strategies you could try - the one I find works well is planning a set of rewards (anything except food like reading a mag, going out for coffee, meeting a friend, phoning a friend, growing an indoor veggie garden and tending to it, start a new hobby, playing with lego, playing with anything, learning, singing your fav song, go on an internet holiday (pick somewhere in the world do a street view walk, check out places of interest, food, shops etc) mix nice ones with silly ones. The idea is to have things that give you fun, get you into the zone (so lost in an activity that time flies by and you don't notice). The more you are in the zone the more happy hormones you release.

    Then make a to-do list, again this can be anything - things you need to get done, things you want to do, people you need to connect with. As things pop into your head add to it. This is a continuous process so you need to keep adding to it. Don't worry about the length of it.

    Then you look through your list and do one thing a day for two weeks. You may want to wait a couple of days to do important things (things that definitely have to be done as they are so long over due or have deadlines attached). But generally, there are no rules about what you pick to do. When you have done your thing reward yourself with something from your collection of rewards. Again the rewards are random, no big rewards for difficult things, just something you fancy doing. And do it for a half to an hour. Long enough to feel the benefit, but short enough that it doesn't become a chore. By the end of the 2 weeks you may find you are wanting to spend more time doing your reward.

    This works because you get that feeling of job well done when you finish sometjing on your to-do list, and you get into the zone doing the reward.

    After 2 weeks you can do another to-do off the list. Each week after that, you can add another thing until your day is full of task/rewards that you can handle. In time diffgicult tasks (things we keep putting off) will seem easier, you will feel happier (I don't know if it will change your thought patterns) others will notice a change in you too.

    You may notice I suggested a reward of meeting or phoning a friend. Tnis is someone whom you've lost contact witn. Contact with your sister and family would be on the to-do list until such times as everyone has healed. It gives you things to look forward to. It's how I got my sewing business started, using old clothes to practice on, buying remnants, and slowly increasing how much I did in a day.

    You can be self employed and not loose your benefits. There is an advisor at the job centre who could help you. If you like animals, an excellent one is small pet hotel - there are not many places for people to leave rabbits, guinea pigs, hamsters etc when they go on holiday. You can decide which animals, and how many you can cope with at a time. The going rate is about £2.50 a day for up to 2 weeks, more for a short stay (as it's using up days that could be part of a week. Discounts for longer. You ask for the animals routine and stick to it the best you can. 3 animals would give you £7.50 a day, £52.50 a week and £210 a month. Not a bad wage for minimal work. If you are not sure about how to look after small animals, you could volunteer at a local charity and learn the basics. Just let the local vet know and you will be inundated with customers.

    There's always house sitting, though that often comes with looking after dogs and cats. There are agencies for this. Gives you a holiday too.

  • Hi there Zanna. I do agree with all you have said. Having a purpose is the key to staying positive even if it starts with tiny things, as you say. You seem to have really grown from small beginnings. I do admire that. I am at the stage of 'to do'lists and giving myself good feedback from small accomplishments. The winter is the hardest time for us all probably, but there are still things to be done indoors even in bad weather. I do not have much money but have decided to make some of the Christmas presents that I would like to give my family. I have found some left over wool and tonight I will knit a head-hugger for my grand daughter to go with the CD I am sending her. Also your idea of looking after small animals really took my fancy. Good luck continue with your sewing business!

  • I just think if people can get out of the box pain is holding them in, there are opportunities to make life better. It won't be the life they had before, but it could be just as fun and rewarding.

    If pain is a constant in your life it does not deserve all the attention it gets. It's there. That's it. The questions to be asked are how can I? I want to do X, y, z. How can I? Break it down into tiny tasks, extremely tedious to begin with, but in time they can increase.

    There's also another strategy that helps put things in persective. 100 ideas. You write down 100 things you want to do - whether you are able to do them or not. Fact or fantasy. It may take a few days. Then you pick one and start exploring how you could do it. Again this can be a mix of fact and fantasy. Where's Dr Who when you need him?

    By getting the brain to think creatively, it will also come up with solutions that will help you get your item done. It's not a quick process, so don't expect instant results. The more you do it though, the quicker you will be able to work out a strategy that works for you.

    Wine tasting holiday in France. Then you research it to the tiniest detail. This may take weeks. What's the best way to travel? where to stay? drs/hospitals near by? can I taste wine with my meds? Is there something else I could do? do they offer non alcoholic drinks? what clothes? where will I eat? etc Then you can build a plan from this and suddenly traveling to France is not difficult. It's possible.

    Add to the list as ideas pop into your head. Even work through the fantasy ones - they give the brain a chance to escape reality too. Only work on one at a time so you remain focused. If at the end of it, it still seems impossible, keep it and review it in 6 months time.

  • Ok.I'm not going to give advice because I think you've probably heard it all before. What I am going to do is give you a hug (hug). And now some facts. You are not a drain on society, you are ill. Our particular society as put benefits in place specifically for people like you and I so that we can still be a member of our society. Your life has value. You mean something to all your family and loved ones. I am lucky because I have found employment that I can currently do with my conditions. You are not alone in feeling like you do and I suspect that you have depression which hasn't been successfully treated. Life is very miserable for anyone trying to live on meagre amounts of money, in constant pain and perpetually tired. You have given up. But even now you are reaching out, seeking advice and so some part of you is still trying. You can still be useful, and you can still live well, you just have to seek the right answers. What could you do in your life to make yourself feel better? It sound like your soul is in as much pain as your body. Healing and acceptance begin in your head so that is where you must start. I am so sorry for your loss, things are very hard. But you are still here which shows you have exceptional courage. This alone is a precious way of teaching your son that strength of character, courage and your love can keep a person going. Life is precious, your brother in law would think so, and yours is as important and precious as anyone else's. Don't waste it, find a way to live it. Xxx

  • Good afternoon Vizzio. Firstly I would like to extend my sadness to you for the loss of your wonderful brother in law. I sure understands yours pains and sorrows after losing a close relative/friend.A dear friend of mine died of cancer last month. Also, like you, I suffers of chronic pains all over my body, since 2001. At first, due to an advanced colon cancer I was given 2 to 3 years to live, I refused to admit it all and "fought" the pains and cancer by immersing myself in my work, but by mid 2008 , the pains were so strong and 24/7, I had to admit I was becoming a "zombie" and had, for medical reasons, to stop working. From then on, its been a life of seeing my GP, hospitals stays because my heath kept and still keep deteriorating, 5 strokes ( last one in 2012, spent almost 2 months in Addenbrooke's hospital with Acquired hydrocephalus, obstructive. Cerebellar Infract ). Lymphoedema, Severe DVT, COPD, also severe, when I can go out, I must be accompanied by my my carers or friends. An a few more health issues. Thing is, your brother in Law and my friend have found peace and are free of pains now and we must be happy and grateful for them. In all those years I never have contemplated suicide. Yes I wish I was dead, many times. I just wish the authorities come to face the fact that "assisted euthanasia", ( Dying In Dignity ), would stop the sufferings for those of us who are forced to " lives like vegetables/zombies, and use the "cost" incurred to "save us" to better use. Sincere regards.

  • Yes Guilty I know what you mean , I'm talking about the pain aspect because Losing someone is something that I can't comment on ,but everything else I can say without doubt that I've been there and done that, and believe me it's Hard I know.

    But taking the time to write on here is a good start, it wont make it go away ,but it may help if you read about how other peoples suffering is troubling them and if you realise that there are other people going through things (maybe ) worse than you, it may help to put things in perspective , it's not much I know, but there is much other advice from others maybe better placed to give better advice, but I just wanted to give you my support and a Hug, and you might feel better later on as things change during these bouts of Hell as when you are in the pits you can only go up, all my best Alex

  • It's all very well with the best wishes and feel positive but unless you have been there and its happend to you you really don't know nothing it's only words talking does nothing to change the way you feel inside

  • Thanks for all your comments people. I know we all have our own battles, I really appreciate your input. xxx

  • Throwing a celtic prayer to you and your family

    Deep peace of the running wave to you.

    Deep peace of the flowing air to you.

    Deep peace of the quiet earth to you.

    Deep peace of the shining stars to you.

    Deep peace of the infinite peace to you.

    Hard to feel a sense of peace when in constant pain. But am hurling it anyway.

  • nedd, that really resonates thanks. I can relate to this and I'm grateful you hurled it my way. I hope you're in a good place.

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