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.