How do you people cope? Im unbearably sad. Ive nothing left.
Hello Jeff,
We’re very sorry to hear you’re facing such difficult challenges. Please reach out to our helpline on 0808 800 0303, or have a look at this page of our website: Helpline and Parkinson's advisers | Parkinson's UK. There are multiple options available to you, and loads of people out there who are happy to chat and help. You’re sure to hear from our community and receive the tremendous value of their advice, but in the meantime please do take advantage of these resources and reach out.
With our warmest regards,
Jason
Forum Moderator
Hi Jeff.
Please follow Jason, the Moderators advice and phone the helpline, especially if you feel so badly. I cannot imagine the depth of your despair,but ,howev,er bad, it will improve in time. Meanwhile, ring for the help I wish I could give you… We are here for you. You are not alone . Take care. EM
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Hello jeffpd
I think your post is probably the most unbearable post I have read on the forum because what comes through loud and clear is the emptiness in your words, they are absolutely without emotion and to me that is simply heartbreaking. You are saying a lot with your words but telling us nothing so I am going to take a stab in the dark here and say you are struggling to take on board your diagnosis whether recent or old news and can see only that it has devastated your life and you see no hope for your future. I am also going to do something I very rarely do on the forum when all you have to respond to is just a few words from someone you know little about, and that is be a bit blunt. I think you are coping by shutting down your emotions, not letting yourself feel any raw emotion like anger at what Parkinson’s has done to your life, or you read about people getting on with their lives and perhaps you can only think ‘who are they fooling’ how can anyone say life with Parkinson’s isn’t anything but absolutely the worst thing that can happen. You may think all I’ve written is rubbish and perhaps it is in which case post again giving a bit more detail and maybe I or someone else can offer something more constructive. I suspect however that you can probably find some truth in at least some of what I have written.
A big part of me wants to stop here and wait to see if you reply and what you say, because I’ve never written a post based on so little that I am basically guessing. Instinct however tells me you need something that maybe, just maybe will give you a glimmer of hope so here goes.
First thing to say is that you write you are unbearably sad and that you have nothing left but if you turn that around you can see that you are astute enough to recognise these things in yourself and furthermore in asking how we cope this could be seen as reaching out for some help, it may be a baby step but you need to recognise it as a positive thing, that you don’t want to feel this nothingness any more, but you don’t know how what to do about it. (excuse the grammatically incorrect long sentence lol)
I would be remiss at this point if I did not suggest it may be worth making an appointment with your GP as you may be depressed and a course of anti depressants may help, or perhaps counselling. However I equally recognise that may be too hard for you at the moment. So I will tell you some things that I have learnt along the way and how I live with my Parkinson’s in a mostly positive way. These are not in any particular order and some or even all may seem impossible to you but on the basis we’ve got to start somewhere it’s all I can offer at the moment.
First of all I don’t give Parkinson’s top billing. I am Tot first and I happen to have Parkinson’s. - that’s a very important thing to me. Parknson’s doesn’t define who I am as a person, I am still me
Second I have Parkinson’s - fact. There is no cure = fact. So since I can’t do anything about these two facts I accept they are part of my life, they will change it over time but the skill, art or whatever you want to call it means there are things I can and do challenge - little victories I call them but worth their weight in gold
I have written frequently that everyone has to find their own way to live with Parkinson’s there is no right or wrong way just your way and that can take some time.
For me that is the need to stay positive and it takes some practice but I have become skilled in turning things on their head and seeing them in a positive light - which is exactly what I did with what you wrote - go back 3 paras.
Recognising all feelings are legitimate good and bad and sometimes you just wish you could stop the world and get off - it’s too hard, having Parkinson’s is the pits and you hate it with every fibre of your being nothing wrong with that. Sometimes. However I don’t want to spend my life being miserable with Parkinson’s always being the dominant factor so I have a just get on with it attitude and just live my life as best i can and enjoy it. Family and friends follow my lead…
There are other things I could probably think of but I don’t want to bore you however there is one very big thing that helps me. There is no question it’s a difficult and complex condition to live with but for me the main war is in your head. Parkinson’s is a loud brash voice that is difficult to quiet and takes over. The softer voice of reason can come through and even the odds if you let your thought processes have a louder voice and able to push negative voice back. Little victories you see.
Maybe some of this makes sense to you maybe none of it does but you asked how we cope so I have tried to answer that… I hope all my guessing isn’t too inaccurate.
Tot
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Thank you to those that responded. Kind and well meaning people are few. I will write some more when I have a little clarity of mind. In the meantime, nothing short of misery and sadness abounds. Imagine if you will an empty cardboard box.
It’s easy to imagine an empty box but instead of thinking of that as if it’s the end, why not think of it as a box waiting to be filled with good things. I don’t happen to agree with you that kind and well meaning people are few, I think most people will help if they are able. You are however at least acknowledging there are such people about - I think that’s the first thing to put in your box and give a bit of thought to. I am not making light of how you feel here, I know only too well how hard it can be to see positives when everything seems black and worthless; however it doesn’t have to be like that. You could write a promise to yourself that for one minute every day you will think good or happy thoughts - it doesn’t have to be big, how the colours of flowers look so much brighter in the sun, that someone smiled and said good morning as you passed them in the street, that you have Parkinson’s but you can still drive so are not reliant on anyone for getting around, that you are fed up feeling miserable and will think of one small thing you can do that makes you happy or gives you a sense of achievement.
Your box may be slow to fill but it certainly doesn’t have to be empty. You have posted on the forum looking for answers which is fine but you have to do your bit too. We can be there for you and support you but it’s you that has to make the decision and take action to kick start your life - no-one can do that for you. Like it or not this is your life and again as I have said several times on the forum, this 24 hours is a once only, there are no repeats, so why waste time on negatives and misery and instead start living the best life you can. If you can’t do it alone get some help from your GP, the helpline, a friend even something someone has written here. You do have a choice about how you view your Parkinson’s and live your life but you have to concentrate your efforts on what you’ve got not what you’ve lost.
Take your empty box and take one minute a day to put something good in it. It would only be a small step, but it is still a step forward.
Tor
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Hi Jeff.
I believe most of us on this forum are keen to help others if we can… So remember you are surrounded by friends here.
When you mentioned an empty box, I thought immediately , a bit like Tot, this box needs filling, with something at least. Think of what you don’t have, and try adding a little bit of that for starters. Sounds simple, but of course for you just now it may well seem impossible, But hang on in there, and keep talking. With help, and in time, you will find what you need. Keep strong. EM
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Hello Jeff,
You have had some amazing advice from otheres,probably all a lot to digest so maybe keep coming back and keep reading to pricess it all.
One thing I would like to tell you is that Tot really helped me come to terms with my husbands diagnosis almost two years ago. That is because I realised that even with Parkinsons you can still live a normal active life. For you that may seem impossible at the moment with how you are feeling. I hate the thought of any condition taking over peoples lives and why should it.
Your loneliness may seem unbearable at the moment but please keep chatting to us so we can support you. Also like Tot has mentioned please try to make a kick start in getting the help you need, talk to your doctor. Having Parkinsons can cause the thoughts you are having so it may well be you can bevput on medication to help you along.
Come back and chat to us as much as you need to. X
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Hello jeffpd
Just wondering how you are feeling now? I do hope you are feeling a bit cheerier even if only a tiny bit - after all, you’ve got to start somewhere.
Tot
Yes it would be good to hear how you are doing jeffpd.
Do come back and let us know. X
Hi Jeff, I have been feeling the same, but my GP noticed that I was deteriorating and asked if he could help me, Last week I had a phone call from a Parkinson’s nurse, she said it could be my meds, also she offered counselling over the phone as I get panic attacks with people, they want to see me face to face to check what’s going on. My GP thinks people with Parkinson’s are forgot about.
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It’s good to hear you have such a great GP who actually notices what is happening and helps you, with that sort of support you won’t go far wrong. Hope you begin to feel better soon
Tot
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Jeffpd - are you ok? Please let us know how you are getting on?
Tot
I started to love loneliness and time with myself.
Hello Jeffpd
We’ve not heard from you recently. How are you getting on? I do hope things are a little better for you now. Perhaps you could just let us know when you get a spare minute. Thanks.
Tot