I go crazy

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I will soon go crazy.. why is everything happening at the same time.

I HATE it,,, since autumn 2020 I have had problems with my personal assistants. Not with them as people, but with sickness, surgery, quarantine.

I have 3 ordinary girls working in my team. One got surgery on her hand, one got back problems and the last one had to stay in quarantine cause of Covid in family. This forced me to survive with assistants that are just working very rare. Its hard to have them working since I have to be so alert all the time. I take away so much in my life when they work just to get through the days. To get dressed, to eat, to just do the basic things in life.

When it started to settled down, the woman with back problems was diagnosed with a special kind of problem that forced her to stop working. We have worked together for 9 years. Its a special kind of relationship between me as disabled, in need of there help and at the same time there work leader. We have been through good times and also very bad times. And we have manage to keep on working together with a smile on our faces. Now her body said, “enough is enough”. She will never work anymore in her life.
She didn’t want to stop working and I didn’t want to lose her in my team.
But what we want we just had to put away, her body was the ruler in it all. And of course the most important thing in all of it.

I have to start all over with a new assistant. She are going to be a good part of the team. We just have to work together, to get to know each other, to see the good sides and the bad sides in each other. To get things to work out in a smooth way. It takes time. It takes a lot of energy. Its a work that have to be done. Its to make assistants to be personal assistants. Its the shades that defines it. It gets personal assistants when we can work together without talking. When she can look at me and know how my day are. Its when I can hear on the tone of her voice how her day is. Its when we can agree about not thinking in the same way and that its totally okay. Its when I can feel comfortable with being nude in front of her, like in the shower and then get dressed and after that sit at the table in the kitchen to have a coworker talk. Its when the silence is comfortable. Its all the shades join together. We have a long way to go, but we will get there.

I have to work with this and at the same time life hits me again.

One assistants got Covid, she got blood cloths from Covid. She have been gone for several weeks now. Tomorrow she was suppose to start working again. I looked forward to that.

Today she went to the stable to take care of her horse. Another horse started to react on something and my assistant was pushed over by her own horse, so bad that she now have broken ribs.
That means, she will not start working tomorrow. She will not start working until several more weeks have gone.

When I got this call from her today about this, my other assistant, that is working today got a call from her hubby. Covid in there daughters class at school. So now the hole family are in quarantine.

Guess what? I feel like my limit is very close.

I feel so sorry for them that this happen. But I, right now, cant find strength to start even trying to solve those problems this will give me. I have to get staff in to working. I have to have staff for 16 hours every day, every good dam day in my life. I have to survive. I HAVE to fix this,,,,, again.

I know in the back of my mind that I will fix this.
I know in the back of my mind that I will survive this.

But NOW, oh I don’t want to deal with it. I don’t want to even think about it. I want to go to sleep, wake up and realize it was a dream. And guess what, that will not happen, cause this is reality, this is my “fucking” life.

I am a positive person, I’m a good work leader, I’m capable enough to solve this. But right now,,,,,, I DONT WANT TO.
Life sucks now, but it will pass and I will get my self back on track and make my days as good as they can be under the circumstances.

I say to myself, rest, turn your head of, listen to blues, chillax and then “go for it”. Make your life with personal assistants and disability as good as it can be. Just let it be for now, for a couple of hours. REST

Sunny day

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A day like this,,,

Sitting on the terrace, we have fully enjoyed the suns warming rays.

After a day in the city, the actions of acting and observant people in corona times we decide to go home.

We took our coffee, our snack and sat down to just listen to the silence and feel the caress of the sun. Its like a miracle every spring when for the first time you we can really sit outside in a tank top and to 100 procent enjoy percent.

And that in a tank top I got in the mail today from my soulmate in USA.
A tank top that say, I’m a polio survivor and a warrior.

It feels like this day has been quite okay and that it is now allowed to be a little tired and exhausted in body and soul.

There is so much I dislike with Corona, but some effect of it I truly like. One is that a lot of us have slowed down the tempo,,, we are truly enjoying the small things in life. Those moments that usually just pass by without us even think about it. Things that we just do, say, think, see, hear.
Now when we realize that life is fragile in so many ways we see, we hear, we think, we challenge life in different ways. And that I think is good for us humans.

Think.

Feel.

Listen.

Enjoy.

Live.

Let go of all those “have to do” or “have to own”.

Live life, feel life and take care of every minute of it.

My first vacin

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I have received my first injection of covid.
Feels perfectly okay. A little headache, tired but nothing more.

Before, I was actually terrified.
Thought about what it is you put in the body. Something I actually have no idea what it is.
Now I got Pfizer and it should have the least side effects.

I really hope that this misery with Covid can end soon.
Just so we can start hanging out a little more normally.

Mentally, I feel the isolation, the total lack of social interaction. I get brain tired, actually sometimes feel a little “stupid in the head”.
That way you can feel when the energy is running low, you think but do not really have the strength to think the thought fully.
I sometimes feel that my head feels sluggish.
The thoughts, the answers that usually jump out like lightning come slower and what I hate most of all is that the anxiety has increased. That social anxiety. I have worked with it for many long years and have come a long way. But now the misery is increasing again and it is only because I do not get the cognitive behavioral therapy I need. My own tools disappear because they are not used that much.

Since I don’t have any contact with my son I don’t feel any longing for him. But for my grandkids, oh yes.
The good part of already having distance with them is that I’m used to that.
I miss them extremely much but I cant do more than I do.

I’m here for them when ever they need to talk. I will never support them in a way that can help them with there addictions. But emotional, supportive in other way, oh yes.

One of them called yesterday to check on how it was after vaccination. That feels so good. I know she cares, I know she/we love each other from to moon and back. But drugs are drugs and drugs are the strongest mistress that exist. A mistress that are very hard to win over.
Its there’s fight, not mine. They are going to fight with this for the rest of there life’s and I would love to have them close to me. But Covid and other things put a stop to that.
I wish that vaccination now can be a tool for being able to meet them again.
My oldest grandkid live about 9 – 10 hours in car from me, and the other one live 4 – 6 hours away. But I will go regardless of how hard it is. Just to see them, hug them and sit and talk face to face. That would be so awesome.
Now we can only wait and hope.

I get my next vaccine in the end om May, so its still far away. But I can dream and its free to dream.

In my dreams I hug them for a long time, sit and chit chat for many hours, go out for walks together, do things we haven’t been able to do for so many years. When they were hard stuck into there drug addiction we could not get together, cause I said NO, a big big NO. I refuse to be a co-dependent. I have been that with my son when he was on drugs. But I have learned the hard way that its not worth it.

There are other ways to show love, to support and those ways are so much better.
I think some people would judge me to be a cold hearted woman. They just don’t understand. My heart hurts for my grandkids, it aches when something happens to them, but I cant live there lives for them.

I have to survive to be there for them. That’s to show love. That’s to be supportive.

What people think and say hurt me of course, but I have to try to shake it of me. Sometimes it get stuck in my heart like thorns and it hurts to realize that what ever I do I will always be judge from ignorant people.

And hey,,, I’m the grandmother, I’m not the reason to there addiction. Opposite, I’m also a victim in all of it. I chose not to live as a victim, at least I truly try to. I have my days, days that are hard. Days that are totally black, but I manage and I’m still here for my grandkids. My life and its goal I think is to help them in this way. My purpose in life is to guide, and I try to do it in a good way. I cant do more than try, I’m only human.

anyway, vaccination one is in my body, let it work and help and I hope everyone take it so we can get this virus to “go to hell”

April in Sweden

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Listening to a good book tonight, nice, relaxing.

It has finally stopped snowing.

April in Sweden is really something special.
During one and the same day, the sun shined this morning, it started to rain, the wind blows in the next second like crazy and then it snowed so much.
April! Spring is approacking.

This is exactly how it should be.

Absolutely fantastic and very hard at the same time.

You want to do soooooooooooooo much.

arrange in the garden, feel the warmth on your face, go for long walks, find the different flowers of spring, see the trees get small buds and follow the growing leaves, sneeze from all the pollen, drink hot coffee sheltered on the terrace.

Enjoy and slowly rock spring into your soul.

Wait for this summer to take over and while waiting plant seeds, potatoes to be germinated, cultivation planned.

I just let all of spring get in to me, try to see all the changes, try to smell all, try to feel it all.
Its the beginning of a new season, its beginning of new summer, its the beginning of harvest, of warm lazy days, its the beginning of so much.

I cant do anything else but love it.




No Power

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I feel powerless, without the ability to act on my own.
Its really completely wrong because I’m a very competent woman, but I usually give up way to easy on things when it comes to things that concerns ME.

Too much of wanting but not being able to.
To much of feeling the body fail.
Too much of not being able to keep up the control to instruct others to do things that I wanted to do.

Living with a physical disability is a struggle, a rewarding one, a tough one.
Its all about how you look at yourself and your disability. I don not live through my disability, I live with it at my side.
For me it is the best way, because I don not think of myself as first of all disabled. I am so much more than disabled, Im ME, I’m Gunilla, I’m a woman, I’m living, I’m decide over my life.
But there are also days when I am completely broken in body and soul.
Today is that kind of day where powerlessness fell on me hard.

Its the small things, common, normal, simple things that becomes big on a day like today.
Just to not being able to pick up something from the floor. To not being able to take a cup of coffee from kitchen in to Livingroom, to change curtains. Those curtains was the trigger today. I just wanted to do all by myself. To climb up the ladder, take the old once down, clean, hang up new curtains and feel the satisfaction that comes with doing such a normal thing.
Today all those thing’s irritates every fiber of my body and soul.

I want to scream right out, but in the usual order, I control myself, I swallow my frustration and try to make it flow from me.
It does not, not always and I know very well that the more I collect the bigger the explosion will me when there is no more room in my body to store frustration and other emotion.

But I am who I am, I handle it my way and now,,, when I write a little here, it flows out of me to some extent.

Thank you for being able to write and to music. Words and music heal me.


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Remembering mood

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I am a big fan of YouTube, since there I can find all the music I love and also find new music to listen to. Its a world filled with new experience and old good or bad feelings.
I’m not sure about when this song came in to my life, but I have always loved Monica Zetterlunds voice and all the emotions she puts in her songs. My dad was always in to music. He played tuba in a large Swedish orchestra, he played Jazz at Nalen, the largest dance palace of the time in Stockholm.
My dad was music.
He jammed with Louis Armstrong, Henry Red Allen, Putte Wickman and a lot of not famous artist. Artist that loved to jam, and as my dad got totally filled up with music. My grandparents, my fathers brothers and sisters, they all played or singed, and almost all of the time.

It was the family’s thing to do. To get together for dinner always ended up with music. At my grandparents place there was this black piano, big piano with candelabra on. A big old piano that someone always played on. My dad played, I played, my cousins played. It was a piano that if it could talk it would have a lot of memories to tell us.

That piano was played on with love, in anger, in sadness, in all emotions we all have inside. For me that piano was a big comfort. I loved to sit quit and just listen to the notes that came out of it. Pushing one key and new tones flowed.
Often someone starting to just play around, someone else took a guitar, someone had a harmonica. The music started to move around in the rooms, and growing with every voice that joined in to the tones.

I loved those moments, cause music can say so much more than words. I’m so grateful for that music was and are such a big part of my life. Music have helped me through so much in my life.

And in music I can find a lot of old memories. My grandmother often sang a song about a breast-sick little girl to me. That was before I got polio and became that little paralyzed, breast-sick little girl in a iron-lung. I always say I have no memories from before I got polio, my life started that day, at its true, except when it comes to music. Then there are glimpses in my subconscious that come to surface.





I used music myself to express a lot of feelings, since I in hospital was teach to be quiet, not cry, be strong, not show emotions, music got to be a part of my language.

When my mom gave me feelings of being a burden I could sing this song for her. The lyric say, ” I’m going to paint the whole world little mom, full of sunshine every day. My wan of saying I’m sorry for being sick, I’m sorry for being a burden? Maybe that was what I wanted to say, but couldn’t so I sang instead.
I’m rather sure about that my mom didn’t see it my way and with my intention. I have to forgive her for that, she couldn’t handle me being sick in polio and disabled for the rest of my life. She hurt me many times in my heart, so many many times and I can not say that she loved me or that I loved her. But music helped me heal, and music gave me the expressions I needed so badly. What she didn’t see was her loss, not mine.

Through years I always use music.
Through years music make me remember.
Through years music gave and give me life.

Today is a day for blues, blues brings fire to my life, blues bring tears to my life, blues bring dance in to my body, blues carry all emotions, so blues carry me.