Every day life

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A ordinary day,,, no not really. But a day filled with fun work.

Suddenly we got feeling. Feeling of wanting to change my Livingroom.
So the preparation began and then we started to paint.
Its such a nice feeling to see it grow from being a dull beige room to a warm, soft, inviting room with grey walls.
Oh yes, grey sounds cold, but its not.

Its so nice to see the result… I’m enjoying it very very much.
People often think that grey is that cold color that only fits outside buildings or in smaller room. I have never understand why.
But I am that kind of person that enjoy colors, I know it don’t look like I’m using much yellow, orange, purple or similar, and that’s just because for me colors are important in the way, that I want them do feel calm, I want them to make my home to give the feeling of saying “Welcome” to my guests.
And I think my home do that.

When I paint pictures I used a lot of colors. Now days, cause of lost muscles in my arms, I can no longer do those big pictures. And somehow that made me change my way of using colors. I’m now days using softer colors, not so much color. I like to work in col and at some spots put in a little bit of color. It give the picture that little thing that make you see it in a different way.
To be very honest, I haven’t paint much lately.
But it is there in my mind and soul, so some day I will be back on doing it and enjoying it.

End of February 2021

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Last day of February 2021. I found the first spring flowers.
Small, white, weak, gentle filled with life.
Its amazing to see them, it brings warm feelings to my inner soul. Its a promise of that things happens and it happens fast. Spring are such a amazing time of the year. I love all seasons cause all of them have something very special to give us.
But spring is that season when everything wakes up.

Its fantastic to see the changing in people. How they slowly get a smile in there faces. Eyes start to shine. Sunshine does so much to us mentaly. So much more than we can even imagine.
So much happens in nature, every day brings a new thing to amaze above, every new day show us that the smallest little leave groves from being just a seed to a wonderful leave. The green colors starts to show in so much variations. Spring is the season of colors and smells.

During the spring, farmers start work in their fields. The smell of manure spreads in the landscapre. A scent of coming harvests of different grains. To be really honest I see autumn as the beginning of a new year.
Autumn, when everything rots, calms down to later be covered with snow and resting before the start which comes now when the sun brings everything back to life.

My plans for the garden are growing, my porch are going to get a well deserved cleaning. New oil on the wood. Table get cleaned and also get oil to make the wood get back its color from last year.

Do you think I love this?





SPRING

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Sunshine…
+ 5 celcius
Birds are singing
Snow is gone
Almost no wind
Coffee
Porch
Music on radio

Guess what, this is life. Life when it shows from the good side.
Life that support me with energy.
Life that slowly wakes up after a long dark winter.
Life that make me feel, there will be spring flowers, there will be a summer ahead.
Life that can take away some of that grey, old winter face.

Spring is the beginning of everything.
The music you can here from the running water in the river are right now so loudly, it sounds like the water are shouting to me,,, “here I come with spring”
Over my head comes a flock of swans. We heard there special singing from far away.
On the field stand the first two cranes I have seen for this season.
Out for a walk and realize that soon, very soon can I go in to the forest with my power chair. It just have to dry up a little in the ground, or I will get stuck in the mud. Been there, done that, not so fun or shall I say,,, I got dirty.

I’m planning for new place in the garden, give me a tickling feeling in my stomach. Like small butterfly’s inside.
Planning on what vegs I’m going to grow in my small garden. Tomato, cucumber, lettuce and strawberries and of course some union and spices.

Spring is truly the time that makes people wake up again. We come out of our homes, look up at the blue sky and realize, wow the long dark/grey days are over. Now we look forward to the sunlight for 24/7.






PPS in progress, changing life

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One thing that I think is hard to explain to people, doctors in general and so on is that I can feel okay at one sec and the next sec totally drained.
There have been many occasions where I can see in people that they do not trust in me. And in some way, I can understand that.
Its not easy to understand that someone that look healthy can be so tired. It is like to be sick demands that you look sick. I have never understood that. There are millions of people living with invisible diseases that get treated in a bad way, and that’s just because the surface looks totally okay. Odd….

Well about my PPS, it progressed and still progress.
I started to use braces on my legs. I had to use wheelchair as I talked about earlier. That was a relief.
Because I realized I could do so much more. I did not lost energy so fast.

PPS is a strange thing to live with. For me, that had no clue about its existence it was to learn so much, to accept so much.
And acceptance are a hard thing.

I have realized through all those years that I have to accept repeatedly.
Its like going over a threshold that are extremely high. |
To come to acceptance I had to,, in one way grief the lost of ability.
I hade to change yet another way to do things.
I hade to change my minds way of thinking.
I hade to work on keeping my self-confidence and sense of accomplishment.

After I once again started to live my life in a wheelchair, I study to become a lawyer.
I focused on administrative law because it includes issues of disability. I worked at a company named STIL, Stockholm’s Independent Living. STIL was the funder of the law that give us the right to have personal assistants. In Swedish it is called LSS/LASS.
Independent Living come from USA, Adolf Ratzka a man that also lives with Polio and PPS, lived in Berkley for studies.
He realized that the system we had in Sweden to help people with disability was so bad. For one person needed help could be forced to get help from 15 – 30 different persons every week. That is mentally draining both for the person but also for the care givers.

Adolf took his knowledge with him to Sweden and together with several persons with different disabilities the work of getting LSS/LASS started. In 1993 the proposition was submitted to the government and in 1994 the law passed.

A new era started. I got into this work in 94-95. We started to work with education of people with different disabilities. To teach them to be able to take care of there own assistants.
We did education that lasted 10 weeks for every group.

It was amazing to see people grow. To see them getting out of being “take care of”. They woke up and realized they were able to do so much more. That is a gift to be a part of.

For me, living with PPS, in a wheelchair, getting weaker and weaker, it was a reward. I also grow as a person. I learned so much about myself. And even if life was hard with all that was going on in my body, I genuinely enjoyed it. I felt that I had a place in life that needed me. A place that took care of my knowledge, not only because of my education, but also as a woman and disabled. To live in a wheelchair did that others in the same situation listen to me in a different way. My knowledge about the law pushed me further and further in to working just with the questions about law and order. I find out that I loved to go to court. To work for people in need gave me a great satisfaction. The best satisfaction I got when I won in court. That’s something I can live on for a long time.

I worked and worked and worked. So many people that needed help. I could work almost 24/7, and just because I was burning for my work and I felt this huge need of helping others to get the right to get personal assistants.

Did I think about my PPS? No, I did not. So, oh yes, I paid a price for it. My pain increased, my muscles got weaker, I got more tired. But still I loved to work.

I had to get more treatment. I had to talk more and more with physio, doctors and so on. My knowledge about PPS grows.

I found out that I must be able to truly explain how it feels inside and outside of my body to get the treatment or my needs to be taken care of.

I could not just say, it hurts, my body are tired. I hade to give them examples of HOW it felt, HOW tired I was.
I found different ways to explain. I talked about the feeling of having the flue and double the pain that you can feel. I told them that my muscles inside could feel that they were sunburned so badly that it felt like someone ripped my skin of. I told them that my back felt like someone put a knife inside of me and slowly turned on it repeatedly.
I talked about my spasm in legs and arms as worms moving in my muscle, so many worms that it gave me a pain that was sometime impossible to relax from.

I tried to explain my fatigue. That is hard to explain cause people usually do not see how tired we get. But my way of explaining was to tell them, imagine you have been very drunk, get an awfully bad hangover and that day are not able to move cause your head hurts, or your body are so tired that you only want to sleep.
I tried to say things like that because I found out that I have to take examples out of peoples life to make them think in my way, to get them to try to understand.

Through out the years I think I have learned to be rather good at explaining how my body feels, function and everything else about it.
Of course I’m not 100 % at it, and that’s because things keep on changing.

I tried to explain to a physiotherapeutic how I can feel that one muscle is losing ability.
When I am stroking my skin, it feels on the inside like bubble wrap, like pits that get deeper and deeper. When it feels like that and the burning sensation increases, I know that now that muscle becomes weaker. It is a new threshold I must go over. To lose muscle strength in my arms scares me very much. I am so depending on them and I have change so much in life already. I know deep inside that I will manage to change things again, just because I must. I am that kind of person.
I think that my way of trying to think of this in a positive way helps me a lot.
I get angry, I get sad, I worry sometimes. But I have this motto that say, I will not live through my disability, I will live beside it, just have it with me.

That way of thinking helps me a lot. Because If I live through it, I think it is very easy to be bitter over what life give me to carry. To be bitter is something I refuse. What is then left to enjoy in life? I know I can’t live the life I thought I was going to live when younger. I know that with all my senses but sometime my brain is arguing with me about that. Of course, it does, I mean how does one not want to live the so-called perfect life.
When I feel like that I stop, I think, I try to look at myself, my life and I realize that even if my road has been bumpy, it has given me a lot.

PPS is not anything I want anyone to go through. If I could get ride of it I would feel grateful. But I also now know that life can be good regardless of what we carry with us, what burdens we have and what sickness we must fight.

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One important thing for me to learn was how to explain to people in health care about post-polio syndrome. I realized that to live with PPS is not easy when it come to getting healthcare, physiotherapy and so on. The reason for that was and still is, that there is a gap of education about PPS.

So I decided to educate myself more about PPS, how it works in our bodies, how it feels to live with it.

I understood when talking to doctors that I truly have to know my body, my symptoms and I have to be able to explain them in a way that didn’t leave any room for distrust.

Explain PPS is not easy. The easiest way is to say that my big muscle groups retire early.

But how to explain pain, fatigue, lack of sustainability, not being able to walk without falling, not being able to do all the things you have always done.

When I talk to a doctor, hire a new personal assistant I try to explain that in my body it feels like always having a bad influence. When muscles are tired its burning in them. When the strength suddenly ends its like falling from standing up with no possibility to get up again.
When I hit, what we call the polio wall, that time when the energy just is gone, I usually try to explain it as if someone puts a fishbowl or helmet on my head. It makes sounds different, it makes my way of lock at the surroundings different, it feels like I can’t do anything to get up and do one more thing.
PPS pain feels in muscles, on skin, in your skeleton. PPS pain is everywhere and no where, that’s what make it so hard to describe.
I have talked to a lot of people with PPS and of course we think different about our pain and lacks of ability. But the thing we have common is that we lose muscles faster than we should do because of aging. To talk to other with the same problems are so rewording. It make you feel your not alone.

SAVING ENERGY

I must save my energy during day, to use it in a different way. I know that what I do today, affect me tomorrow.

When I have my chorus evenings, I know I must rest during day, to save energy.
I know that to sing together in a choir give me a lot of positivity, it fills me up with good emotions. But I also know, I pay for it tomorrow. Oh, it is worth it, wort everything to do fun, nice, good things. It gives me the right kind of energy that I need so badly.

I love to exercise and its good for me if, I don’t do to much or to little. That is so hard to learn to live with. I’m that kind of person that love to use my body, I love to feel the pain in the muscles after a good work out at the gym. That ended when PPS made its entrance in my life.

I had to change my way of exercise, my way to be actives, to be among friends, to join parties, to work. I had to change so much so so much.

One thing I find out pretty fast is that when people asked me to join them for a night on town and I said no, it was okay the first time, the second time, the third time. But after saying no over and over again, people didn’t contacted me as much as earlier. I wasn’t so fun to be with anymore. I once asked a friend why she didn’t call me anymore about going out, and the answer I got was, you only say no, you have become so boring. I started to realize, a lot of things will be different. And yes, a lot of things have changed.
I have changed activities, for instance, I had to stop paint in oil, and start with something not so heavy. I could no longer do jewelry in silver. It took to much strength out of me and my fingers didn’t do what I want them to do. I used to love to dance, didn’t like that in wheelchair so I stopped. I loved to go out in forest, that I still do but the feeling is not the same when doing it in a powerchair.
I’m not complaining, cause I’m that kind of person that always try to see the good things even in the bad. And I think that have helped me a lot in life.

Now I feel my energy slowly running out of me, so I be back later on to continue this ……………..

and PPS continues

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It was truly amazing.
I meet people with Polio, people with PPS. People that understood what I was talking about. People that could help me with acceptance and people that had a lot of experience.
I got a lot of good advices on how to manage with pain, with using of aid that would make my life easier. Just to listen to people with the same experiences is so important.
I never forget one old woman that took me under her wings, she told me so much vice things. She made me feel it was okay to be sad, to be angry but also that it was so important to move on. To find other goals in life, to figure out how to do things easier but still feel that the things I did was meaningful. For instance, she made me realize that if I cannot paint in oil, why not try acrylic. I often said, no if I cannot do this, I will paint at all. You get blind in your grief for that there are other things that can make you feel good.
She also told me about her childhood with polio and that made me realize that living under her circumstances with polio comparing to mine, then mine was a golden road. I had to find new ways, if she could, then I could also do it.

Slowly I learned to handle my life again in a different way.

At this rehabilitation we attended classes about how PPS affect our bodies. That was extremely good. Knowledge is the most important thing. We learn all our life’s and for me this was something that gave a kind of security.

After a couple of years, with leg bandage, crutches, and pain I had to do surgery in my right hand. I got a wheelchair to manage to go around. I got stuck in the wheelchair for eight weeks and after that I was no longer able to walk around with crutches. I lost muscles in my arms.
So now I hade to go over one more obstacle, I had to learn to live a life with a wheelchair.

It was not easy, not at all. It is a road that encounters obstacles. Not only in terms of accessibility in society but also people’s attitudes.
I could feel awfully bad when I realized that I got treated in a different way as a person in a wheelchair.
When I still was walking no one look at me in a different way. Now I got this feeling that I have to all the time show that I was capable. Capable to work, capable to take care of things. Capable at everything.
That was frustrating. And for me that are born a woman that must achieve all the time it was hard in different dimensions. My patience was put to the test. But Im a human, so I learned. And I have learned so so much.

Start living with PPS, post polio syndrom

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The first years living with PPS was hard.
The mental part of it have to do with acceptance.
Acceptance about that my body don’t work as I want it to do.
Acceptance about that my body hurts so badly.
Acceptance about that I no longer could be independent.

The first years was filled with worry, with questions that I didn’t get answer to.
After 2 years I got the opportunity to go to rehabilitation at a place in Sweden where they are specialists on Polio.
This was a place that have been working with polio since middle of 40ths.

When I took my first step into that place my hole body screamed NO.
I wanted to turn around and go home again.
I hade never in my adult life been together with people in wheelchairs, people with different abilities, sick people. I just had a little polio, and it was not more than that.
So for me this was a totally different world. I think I there and then realized that my life had totally turn around.

Now I was a person with PPS and I had no clue on how to deal with it.

I never forget this woman that was responsible over this rehabilitation place. She took my bag, she looked at me and saw right through me. She saw my anxiety, my worry, my feeling of being totally lost.
She walked me down to my room and sat with me, talked, talked and talked and begged me to just give it two days. I did, and I have never regret that.
I went back to that place for 16 years and then …………….. (more will come)

Losing ability to…..

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I got polio in 1958 at age 6, was paralized all over. Breathing with help of a iron lung.
As time whent by I got better and better. It ended with just having a limp at my right leg, a little weaker right arm and some smaller problems with my spine.

I lived my life in a hurry. I dont know why, but I have always had that feeling of wanting to achive as much as possible. To not miss something. Some people would probably call me a ambitious controlling woman. My goal was always to be good at what I did and to learn a new thing every day. A good goal for me to live by.

I never thought about that polio was going to hunt me later in life. With hunt I meen that it take controll over me again. I didnt know anything about postpoliosyndrom. No one have talked to me about it. So I lived a life filled with excersies, lifting heavy weights. Addicted to training. Worked way way to much. Opened my own restaurant that was open 24/7. And of course I usually worked nights cause it gave me the opportunity to be home evenings and mornings when my son needed me.
I worked way to much, to work 7 days a week was common and totaly natural for me.
I was filled with energy.
In the middle of -80ths I suddenly started to feel like I always had influenza. Feelt like living with fever, pain in muscels, back even under my feets. I hade to try to get help for it but no doctor could figur out what was wrong with me.
They tested me for rheumatism, x-ray my brain for tumors, they even talked about that it could be me being mentally ill.

But one day, at work, the pain was so bad, that my body turned of. I fainted and woke up in the emergency room. That was my lucky day, cause the doctor that was working where a professor in PPS, Post polio Syndrom. He was mad, asked people working if no one had read my journal and recognize that I have had polio.

My life with PPS started. I got a diagnos. It took me almost 7 years to get it. Way to long but finaly I got my diagnos. Finaly I could start relate to how to live a new life with PPS.
In the beginning so much happend. I hade to go through many many test, start to use a cane, to walk with a leg brace. I had to learn to deal with pain in a new way. To exersice in a better way. To be kinder to my body. A very bumpy road started. I started to lose abilities, and that was hard.

This is emotionell for me so I stop for today.

For now I will go outside in the cold but sunny weather to give myself some good energy.





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