Morning all,sorry to start by negative comment but I wake most days wishing I was not here. Feel.I am going mad. Had Parkies about 14 years, DBS last year, on antidepressants since forever, recently lost both parents and only sibling, hubby all I have but feel he getting fed up with me, no friends I wish to burden to, just feel what is the point? am not going to do anything stupid (too much of a chicken) but Fed up of feeling like shit, crying all the time. Start counselling tomorrow, done CBT. Used to be such a fun loving, extrovert positive person but now complete different and I hate it.
I can’t give you any advice and I’m sorry that I’m unable to do so. What I would say is that you’ve taken the biggest first step by arranging some counselling which should help a little but give yourself time to process all that has happened over the past months and talking to someone (even if you don’t feel like it) will help you cope with life because it ain’t easy. Take care Poppy x
Bless you Poppy, thank you xx
So sorry to hear of your recent loss, and the ongoing difficulties that you are experiencing with your mental health. I would echo @Poppyseed123’s sentiments regarding the counselling you’ve arranged, I do hope that over time this will prove useful for you.
We do have further information on Parkinson’s and Mental Health on our website here and we’ve also put together a mindfulness toolkit that others have found useful in managing their mental health.
Do remember that you can also contact our Helpline and Local Adviser service for support too.
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Am so sorry @LittleMixWorry to hear how bad you are feeling. Given how much loss you have suffered recently, and since your diagnosis, it is a wonder you can still put one foot in front of the other. There must be a nugget of hope, somewhere deep inside, that keeps you going, and I take my hat off to you because it must be harder than anyone can imagine unless you are you. Having the strength and courage ( even if it doesn’t feel like that) to seek help via counselling is such a good step and I really hope that it helps, even if “just” by allowing you to pour out your heart, tell it how it really is and be comforted by someone who accepts and understands. It can be so very hard to see any light in all the dark, but it is there somewhere and you will find it if you keep going, one little step at a time.
Thanks Pippa, I appreciate it x
Can you try to find that Spiritual part of yourself whether that’s religion or New Age? I get lots of comfort from it, just an idea xx
I think that instead of remembering what you used to be like. Think about what you could be doing now. Little things that you and your hubby could be doing together. Even if that’s just looking at the night sky, or sitting in the garden with sun on your face. Take time to enjoy these little things that most people zip past in a hurry. Be positive its infectious and itl make your hubby’s day too. Take care
I tried, glad it works for you.
He is too busy and believe me, have suggested doing things like that but he doesn’t want to. I can’t make myself positive, used to be but seriously unable to and it is not for the want of trying. I really hate feeling like this.
What about losing yourself in a good book or film. Little things keep you going.
Please accept a virtual hug of encouragement.
Thank you. I hate this feeling so much.
Hi LittleMixWorry. Sorry to read about your loss and your fight with Parkinson’s. I was diagnosed about 15 years ago and the last few years have been rough. However, I find that listening to MP3’s about healing and relaxation by Dr. Lee Pulos helps a lot. His site can be found on the net and the tracks available are cheap. I hope these may help you. I’m a great believer in training the mind to influence the body. I do hope that things improve for you. Thinking of you, best wishes.
An open letter to family, caretakers,friends and medical staff…
What Parkinson’s really feels like…
The early days of Parkinson’s you and we may not see much difference especially when medication is still working well.
We can still run a home, work, play with our children, organise outings, holidays, parties, control finances, go to parents evening, run our children to friends etc…all the things everyone takes for granted.
However time slowly takes its toll and one day you wonder where time went and how you got here.
But worst of all you realise no one else realises how bad things have got because the worse parts are not visible to others…like
Loss of smell
Slight balance issues
Fear of the unknown
Loss of autonomy
Loss of dignity
Medication wearing off
Being trapped in your own body
Loss of strength
Unable to keep thoughts in your head
Never being able to be safe alone
Loss of concentration
Then when you have to come off medication for a short time you realise you progressed much further than anticipated and it’s fuckin’ terrifying.
Side effects of medication can be horrific, sometimes worse than your illness.
Frustration at having to ask for help and being told to ‘wait’
Why don’t you understand the last thing we want is to ask you for help so when you say wait…we don’t ask again, we struggle or go with out.
And all the time we know things won’t be better.
So now YOU imagine yourself in our shoes…there’s NOTHING…absolutely fucking NOTHING we can do about it. We are at the mercy of those we have to rely on.
So our Quality of life has much to do with the quality of the people who care for us.
Do you research, do you try to imagine, do you ask us how we feel…even our medical teams can’t feel what we feel so how can we expect others to ,but kindness and empathy go a long way.
Believe me there are some wonderful,amazing caregivers out there…equally some cruel and nasty. I’ve experienced both.
This letter is not directed at anyone specifically but it’s a true representation of my life.
To those carers who have love…you are worth more than diamonds to us and we appreciate every gesture of kindness from you.
To others who just don’t understand or never really thought about how your pwp feels…please try.
And to my fellow pwp who feel family and friends have slowly slid out of our lives, forgive them because hell we can’t even understand Parkinson’s so we can’t expect anything else, people are scared of change and what they don’t understand,
All my love xxxxx
I wrote this and it’s had amazing response …but I wanted to let people know I still love life and my now small circle of friends xxx
Hello I just wanted to say you are not alone. I feel the same and find each day a trial. i wake up in pain, find managing my meds difficult and go to bed in pain. I, too, used to be a “half full” person but after 11 years of PD find life an effort. Even a treat like the hairdressers has to be micro managed because my meds only last a short time and I don’t want to embarrass myself.My husband is care weary too it isn’t what he signed up for and he is very active so it highlights my tiredness even more. My thoughts are with you.
Sorry to hear of those suffering with depression/ anxiety too.