I bore myself

After 5 long years, single and alone with a bad dog, I would think that I was adapting. I am in ways that are important as a good person. I was so uncomfortable watching my friends go on with living their life. I chose to be isolated from that loss. I am so uncomfortable with there wellness, compared to my illness. I don’t paint any more. Or date. If my meds go ‘off‘ while I am out, I am terrified that I will not make it back home safe. I search for my strength to guide me. I just feel so angry, and I was always the happy one.

This can not be the end of my story, the answer is inside of me and I believe the meaning will free me. Maybe, my isolating myself does not make sense to many, but I did not want to be jealous of others happiness, or be a burden. Where do I go from here, and do I need a guide.

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Comments

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  • hillyb1950 author
    8 months ago

    thanks for your caring responses. We have many groups, and I want to join one but I am not ready just yet.
    YOU ARE YOUNG AND LIFE IS UNFAIR!
    When I was born I stopped breathing. I had SIDS.
    I was in ICU for one year. The doctor gave my parents 10% hope of recovery . But My incredible very young mom said ” look at her fists, she is a fighter. I will take her home, healthy and happy” Voila!
    So I ask God , ” why young people?” I DO NOT GET IT. I am going to try harder, better and no so self indulgent. My fists are still tight.
    Thank you for caring responses.

  • hillyb1950 author
    8 months ago

    Alone, most of the time I have been so isolated. I was commented ON AS IF i WAS IN THIRD PERSON.
    “May Jesus watch over me” I am not that faith.
    ” gross, does that never stop shaking?”
    “I don’t care if you are shaking…I love you”
    “poor Hilly never had a day of luck”. “What can you do”? So, I just decided that when your lifetime friends say, bummer and they work with hospice, I just gave up…not on them, on me.
    I SOLD COUTURE CLOTHES AND MERCHANDISED, PAINTED, AND SOCIALIZED. When I was 60 my mom was in her 8th year of Alzheimer’s.My only close friend is nearing 90.My other dying friend is 80, COPD.

  • patenonpatient
    8 months ago

    I am thinking alot about your post. I am a caretaker and also avoiding people. I’m resolving to go to a support meeting. Asking for the Holy Spirit’s help, and living for today only, helps me.

  • Karl R moderator
    9 months ago

    Hello hillyb1950,

    I think KellyW has given great suggestions to getting back into society and taking back some control. I was not a fan of support groups at first, but then I found how educational, uplifting, empowering, and friend building they can be.

    When I was diagnosed at the age of 23,I saw symptoms at 17 years old. I am almost 52, now. I thought my life would be in turmoil from then on. At first, I was self conscious about what others thought, who might be watching, or if I could even date with Parkinson’s.

    It doesn’t matter what other people think, when it comes to my symptoms in public. If people notice that I stumble, or stutter a little, I educate them on Parkinson’s disease and I usually make a new friend who knows someone with Parkinson’s. There is a lot of help out there. This site, ParkinsonsDisease.net, is a great resource with lots of knowledgeable people.

    I have been married now for over 20 years to my wonderful wife, Angela, I ran a support group for 12 years, written a blog for over 10 years, written 2 books, and have so much more to accomplish.

    I encourage you to find a support group in your area.Try a few until you find one or more that you like. I have been doing Rock Steady Boxing and seeing results plus making lots of friends! Get out of the house, even just for some social get together. Find motivation in seeking things like massage, yoga classes for balance and flexibility, laughing everyday at a funny show or movie, or learning meditation to calm the mind. Exercise really helps.

    I know it isn’t easy and it is so much easier to stay home and do nothing–but it is the people who stay active, social, positive, and flexible to new ideas that seem to need less medication and have better overall results. This is just my observation of having Parkinson’s for over 30 years.

    I wish you all the best and if I can offer you any ideas, suggestions, or tips, feel free to ask.

    Be Well,

    Karl-ParkinsonsDisease.net Team Member

  • KellyW moderator
    9 months ago

    Hi hillyb1950. I completely understand your frustration with feelings of isolation and envy. I feel the same way. I no longer work so I lost my day-to-day personal interactions. When I went through a particularly bad spell of PD and had trouble walking, I spend most of the time in bed. It’s hard when you see your friends going on with their lives and you hanging in the background. I’ve had PD a long time – 16 years. Ten of which were pretty good – the last 6 have packed a wallop until I had DBS.
    My best piece of advice would be to find a Parkinson’s support group in your area. They really do help! It’s amazing the bonds you create with people who are going through the same disease. If you can’t find a local PD group, try a depression/anxiety support group. I did that until I started my own young onset group. My first day at a support group, I felt so out of place. How can a complete stranger know what I am going through? They did and it really turned things around for me.
    As far as being envious of other’s lives, I’ve stopped spending time on Facebook looking at their posts. I’ve found what people post are only the good times, not the bad. I do, still, every day wonder what my life would be like without PD. Where would I be in my career? All of my friends who started our jobs at the same time are all directors and make a ton of money. I can’t say that for myself. I can say, and my husband tells me this is more important, that I have started two young onset support groups that help people like you and me. I volunteer for the Parkinson’s Foundation and the Mdchael J Fox Foundation and I work here atnParkinsonsDisease.net. Some might say that Parkinson’s has become my whole life. Maybe, but I had to reinvent my life and find something to keep me going an I did.
    I hope you can learn to live well with PD. It’s hard but not impossible. Surround yourself with people who care about you. Take your dog for longs walks and meet the neighbors. Anything that can lure you away from the isolation black hole that is so easy to slip in to.
    I hope this is helpful. Kelly, ParkinsonsDisease.net Team Member

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