There are some days when I just can't seem to get anything right. Today is one of those days! I am weepy, edgy, moody, offensive, defensive and it seems every word out of my mouth just sounds stupid! My Robert, the Love of my life, is hardworking, generous, funny, caring and would do anything for me. He accepts me as I am, but keeps me on my toes, challenges me, encourages me to keep going even when I just want to throw in the towel and quit. So why do I think every time he is five minutes late that he's cheating on me, or every time he looks at his text messages he's talking to some other woman who he likes more. It's stupid, I know. He tells me all the time how much he loves me, how he would do anything to take away my pain and still I want to accuse. These negative thoughts run around my brain all the time, these stupid, stupid thoughts that I know are not true. I have learned not to speak aloud these damn thought, but I can't make them stop. I hate myself or at least this person I have become. This disease has changed me and I don't like it! I have always been a strong, independent, confident woman and now I feel, how could anyone love me? I am needy, moody, shaky, dependent, and my thought are just not me. I could never thank My Robert enough for the love he gives me , for the life he shares with me, for the strength and the happiness he shows me. But, I'm going to try!
Stupid Thoughts!: There are some days when... - Cure Parkinson's
Stupid Thoughts!
Hi JJane. Most of your feelings are just human nature. You have a disease & you think no one wants to be with you. But it sounds like you have a good man & if he didn't care for you deeply, he would have already been out the door. I can tell by your posts/comments that you're a very smart lady. Keep your chin up & try to keep smiling. The more you smile, the more you will make him smile. It might help for you to join a support group & talk to others that feel the same way, that usually helps me. We've all had those kind of feelings before so you're not alone. You should also try to do some type of exercising. Exercising, whether it be walking, yoga, weight lifting, etc. will change your mood & make you stronger. I do boxing so I punch a bag as hard as I can & it gets all of my negative thoughts out of head & I try to leave those bad thoughts at the gym. I know sometimes it's easier said than done, but ya gotta keep trying. Hang in there & keep fighting this mean old disease. Try to not let it get the best of you, tell it who's boss!
Laglag,
I do understand the thought and emotions are irrational and I have always been a very positive person still that doesn't stop those stupid thoughts.
Let them come and blow past you like clouds.
Beautifully said!
Jupiterjane, Your words made me feel like my husband was talking to me. You see he never has said any of these things but he has asked me why I stay. He and I have been together for 39 years and 11 of those he has been suffering with PD. He feels sooo bad that he is sick. Just like you do Jane. He asks me who I'm talking to on Facebook. He asks me who I'm on the phone with. He asks me who I'm talking to. It gets to me sometimes. I would get upset in the beginning but not anymore. I understand now. I will NEVER leave him!! I think he knows now but as you, those demons sometimes come back and haunt him. You and your husband will stay together Jane. I know you will. You will deal with this together just as my husband and I will. God Bless you both.
Hi Jane
I never would have believed my life would have turned out like this. Parkinsons is so cruel.
It gives with one hand and takes with the other. It is so hard to stay positive. You are very fortunate to have such a supportive husband, who obviously loves you very much. Do you manage to do any painting? You are gifted in so many ways. They say you always hurt the one you love and I think that is true. My husband, on the other hand, tends to ignore that there is anything wrong with me. He will always help if I ask him, but mostly leaves me alone to get on with things myself. It is his way of coping and whilst it can be frustrating, I can see where he is coming from. You have so much to cope with. You are an inspiration to all of us.
Take care
Sue
You guys are so lucky,pd is a very cruel.my ex left 5yrs ago when I had breast cancer.didn't want to know then and it has been a tough ride when I thought I was getting a bit better I was diagnosed Parkinson’s. And it's been 3yrs.I am still working but since last few months it been progressing to the extent I find walking really difficult. I am so fed up and as I wrk in retail I haveto stand.after been on sick I decided to go bc to wrk starting with 2hrs but trust me those 2hrs killed me by the 2nd day.I am in so much pain.so I M bc to square one..I love my job just the thought of giving it up really depresses me.I live alone and I really struggle with everything. So guys if you have husbands/partners who support you then please don't feel bad.I feel when people are helping me at wrk or when I am shopping especially in supermarkets when cashiers help me to pack etc I feel bad because I take so long and by the time I finish there is a long que but people are very kind and understanding but I just feel like a burden.I hate thus condition of Parkinson’s. I don't know but if anybody shares thus whenever I M out and about in feel people are looking at me thinking I might be drunk.-I get weird looks from people! Does anyone have this too,
5979
Hi 5979,
Living with Parkinson's and all that it entails has been one of the most difficult thing I have experienced. After being diagnosed I felt so lost, unsure of what to do. I tried to hang on to my job for as long as possible and in the end they practically had to push me out the door my fingernails scraping the door jambs. This is a damn stupid disease that steals your personality and leaves you feeling lost. All I can say is try to challenge your mind every day and do what makes you happy. I use to write poetry every day and now I find it hard to just speak coherently but I won't give up I just can't. I pick one of my poems for you. Hope it help.
I Am A Person
Eyes that stare,
whispered comments,
children pointing
as adults pull them
close,sharp
objections to
their curiosity.
I wanted to shout,
"I am a person,
not a monster".
Raising my
head high,
I feel my body
begin to rumble,
an earthquake
of muscle
and nerve,
faulty messages
sent from
the brain.
My leg begins
its dance,
unable to
keep time.
A disjointed,
unrelenting,
twisting mass
of flesh.
Soon,
the arm
joins in
and the
practiced,
off key,
waltz of
Parkinson's
begins.
My head
bobbing,
I try to
stay calm
but the anger
builds quickly,
and all I want
is to be home,
away from all
the stupidity.
If only people
would stop
and think,
That could be me,
or my wife,
my sister, my Mom.
I was once whole,
a member of the
hustle and bustle world
But my life
has changed forever,
with the twitching
of a finger.
I do not accuse My Robert of anything I think he is doing because I know it would hurt him and I could never do that to him. He talks about his day, tells me about his co-workers and the daily dramas and when he's finished I know he truly loves me and would not stray, but for the first few moments when he gets home my mind jumps to stupid thoughts. I want to stop these thoughts.
Dear Jane,
I really feel for you because I've been there too. It's so hard when you know you're not your true self, that what's happened in your brain has switched you around somehow, weakened your defenses, and changed how you feel and see yourself. Are you able to increase your exercising at all? That is one way that has always helped me. Another two things that might possibly help that I tried are trying to talk it through again with your husband and working on it in therapy. It's awful painful to go through these thoughts, but they will pass and good periods will come again. Your husband sounds like he really loves you. Sending you much love,
Leilani
Hi Leilani,
I do see a Psychologist twice a month and it is very helpful. Robert and I are in a good place, there is a lot of Love and when I have these thoughts I can usually talk myself through them so I do not accuse but they come back, they come back.
Thanks for the Love.
Jane don't know how old you are but looking beyond illness could you be menopausal,the irrational insecurity you feel the mood swings,its just a thought,but the first that popped into my head when reading your post.You need to be kinder to yourself.My son asked me why don't you just enjoy being tired mum?
He was so right,accept it go with it ,be adaptive and feel better,if I don't I feel crap,Surrender isnt always defeat is what im trying to say ,I think.
Hi Balderdash,
I am 54 and started menopause at 45. I have discussed this with my MD, Menopause is not the problem. I am stronger than I seem. I feel bad that I can't contribute more to our lives.
Thanks for your kind words.
jupiter jane, I am sorry that you feel that way about yourself--i feel the same way about myself. I feel like I dont help anyone. I am too sick and tired to be a good mom, wife and daughter. and i also have a wonderful husband. This is not how I pictured our retirement together. I wonder if you have had the DBS surgery. Ever since I had mine, i feel like my family would just rather have me shut up. I know they dont but it seems that I talk too fast and dont make much sense when I do talk. I think that my personality has changed and I dont like it. Of course, no doctor will ever support me by saying that this is related to the DBS, but I know that it is because just a few short months ago i could teach and talk coherently.
Siak
I have heard this before, personality altered after DBS so even if your MD doesnt agree I do know doctors who would say it is possible side effect.
Hi Siak,
No, no DBS. I know my personality is changing, how could it not. I am not the same person I was 11 years ago. I have no energy, my thoughts are often jumbled, lack of concentration and motivation keep me jumping from one project to another and I never get anything completed. This is the total opposite of the woman i used to be!
Jane,
Do you remember about a year ago the poem you posted called "How to Make a Beautiful Life" by an Unknown Author? Try reading it again; seems it might apply right now?
Thanks Laglag I think I'll try to read that every day!
It's a crisis that most people living with long term conditions go through at some point but you also need to exclude depression which shows in many different ways. You need this to be excluded and also seek out counselling . Cognitive behaviour therapy has also helped many along the way. Finally the anxiety may be drug related as some ipd treatments can do this and by reducing the dose or changing treatments it can improve.
Thanks isis636, I see a Psychologists twice a month and it is helpful.
my husband is now house bed or chair bound and needs hoisting . I am 78 and although have carers nigth and morning still do most personal needs myself . he gets embarrassed and I don't want him to feel that way .
I do get out fo no longer than two hours I have a sitter one of the lunchtimes .
I only go for coffee with my daughter , it does me the world of good .
when I came back last night . he said I am in a mess here .
His head gets very muddles scrambled whatever you like to call it . for years he would ask me to tidy up if I had left a cup around for instance .
it used to get on my nerves , I am fairly tidy , He would t lol me he couldn't cope with it . I sort of understood it at the time . he isn't an over fussy man .
I realise now it was something to do its the. One and Parkinsons
Last night I was out for a short time and he told me he was in a mess .I asked him if it worried him or was he ever frightened when he was on his own , he said no I no you will always look after me , Imost certainly will . .
getting back to your own feelings . Have you tried singing. whenever John has negative thoughts I will start to sing and get him to join him . it's anything to distract the bad thought
We both have Parkinsons is how I see it and it is very hard for me as well as him .
I am honest with him and tell him when it's too much or am fed up , it can be very stressful after all it is 24/7 all year I told him I need to my small break away , not from him but from Parkinsons .
Cabbagecottage you are an inspiration!
Depression and paranoia Jane,
(Symptoms of paranoia and include intense and irrational mistrust or suspicion, which can bring on sense of rage and betrayal)
Some medication adjustment might help. Do tell someone before it hurts your relationship too badly.
I'm working on it. Thanks Hikoi.
Jupiterjane, I read your profile and I still can still see that strong and confident woman that identifies you. It has just temporarily been put on the back burner while you grieve. We all do it when this challenge that has been sent to us becomes way to much to handle.
All these replies from PD sufferers are so uplifting. Daily we all go through so much just to feel normal. I hope these responses have helped you feel better. Today is another day and may it be a brighter and happier one for you. Thank you for reaching out. Maybe today you will be that strong and confident woman back on the front burner.
Thanks for kind and inspiring words.
You are not stupid. You are special and deserve all the love you can get. I pray that angels surround you and bring you healing love. You have a right to feel the way you do. Just feel your feelings, then let them go.
Thank You for the support Michaela13. It means a lot!
I can relate to what you're saying.as I read the words you write , i think to myself, OMG when did I write this. I've been married to my wonderful husband for 32 and couldn't do it without him. We're truly blessed to have them! We have to take 1day at a time and hope for the best.😊
Annie1963, I'm right there with you, one step at a time!
jupiter jane, the fact that you took the time to respond to everyone's replies individually shows what a very special person you are. I am so impressed. Usually I feel that if I have a bad day, then I know it goes in cycles and will also have good days. try to keep the good days in your mind and spirit to get you through the bad days. I dont know your situation so i wont diminish your pain by making light of it. The most important thing for you is to try to surround yourself with positive people who have things in common with you. I have decided for myself that i will try to hold back on spending too much time on this or other parkinsons blogs, because even though they are helpful, spending time away from live people who are smiling and reminding me of the beauty of life is not good for my state of mind. I hope you can find something to make you realize that you are special and are still needed by those you love.
You all took the time to respond to my post and I feel what you wrote is important to me and everyone deserves my Thanks. All comments are helpful!
Yesterday was one of those days for me. I spilled or dropped almost everything I touched and I do not even tremor anymore since DBS. I got out of the car and the beeping reminder to take my keys out was driving me nuts -I realized that my purse was still in the car hence the beeping and my car was on and in gear!
I cooked dinner twice and ended up going to subway because the first two attempts were failures. But the worst was the feeling so sad and unloved. I know my family and my husband love me and go above and beyond to do everything possible to show me but some days.....
LauraL,
The reason I wrote this post was so I could say these thought and emotions out loud, doing so always makes me feel better and gives me a reference point to look back on. It help to gauge how far I've come. I try to learn from every experience even bad ones.
I love you too Laura and I hope your Today, like mine, will be better than our yesterdays!
Lithium Orotate can help keep you from getting those repetitive thoughts like a broken record player, from constantly playing back in your brain. It's an essential mineral that your brain needs, yet is almost completely absent from the modern food supply.
As for the moodiness, it can be caused by a Hormonal imbalance due to either a lack of Iodine (since you need it to create your hormones) or due to your age (some women become premenopausal as early as 40) Potassium Iodate will not only help to keep your hormone levels normal, but can help with other issues like Fibromyalgia, muscle weakness, breast tenderness and other mystery pains.
Pregnenolone can also help to keep brain's production of the correct hormone balance that keeps you sane and happy. Most people don't know that it's not just your Thyroid that produces Hormones, but your brain does as well, and while your Thyroid depends on Iodine for proper production, your brain depends on both Iodine and Pregnenolone.
Thanks for the info!
My husband and I have been married for 56 years and I still have thoughts that he does not love me as he is
not very vocal about it. However, since I have been dx with PD, he has shown by his actions that he does
love me and I am trying to rid my mind of its negative thoughts. I know it is not easy. I hope you are
feeling better today. I am sending positive thoughts your way.
Thank You Lillee76, for reminding me of all the love My Robert shows me in all the things he does for me. I am feeling better, Thanks for the positive thoughts flowing my way!
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