Translation of blog post written march 2, 2018.

Have you been crying? Is it anything special? How are you? Maybe you need to be alone for a while? The questions come from my assistant and I understand why he asks them. It's his way of saying that he sees that I do not feel well,that  he sees that I have  cried.

It is  kind of now I understand how bad I was feeling at the end of 2016 and half of 2017. I had (and still have) a depression. At first I was quiet, didn´t say anything to anyone. Not to my family, friends, and not to the counselor or psychologist. I cried most of the time. No one recognized my behavior. I didn´t answer the phone and didn´t  participate in social activities. I lost my memory. Because of my disability I have bad short-term memory, but it got  even worse during the depression. I, who normally remembers numbers very well, forgot phone numbers and the  code for my credit card. I forgot appointments. I never knew what day  it was,  I felt like all the days got together . I didn´t  remember if I did my physical teraphy or not etc. Some time later, I was acting out. I hurt two of my assistants physically. ( I don´t remember this myself, one of the assistants told it to me later on). Other assistants I didn´t let into my apartment. I refused to open the door when they rang the bell.

It also felt like I wanted to provoke one of my assistants to get  angry. It was him I was thinking about  today when I was sad. I remember one day when I told him it was no point that he tried to help me out of my depression.  - Why is there no point? he asked me. In current situation I don`t remember what I answered him. I remember, however, that he asked me  if I understood how  he felt in the midst of it all. I said yes, because I have experience of two friends who  had a depression and remember how I felt during that period. It was also the same assistant who had to call the police when I refused to go into emergency psychiatric care despite that I needed it. According to myself, I wasn´t sick even though I had depression with  delusions. I also felt that I was a person who was stupid, ugly, and stood in the way of those near me.

During this period I wasn´t  fair to my psychologist either. Called him  by a female name although I know he is a man. I sounded really cold and angry when I said it. This was when the person was trying to get me into the emergency psychiatry and I didn´t want to. Again, I considered myself not to be sick.

Memories of emergency psyhiatry are hard to carry.  I think of how I was feeling, but also of everything I witnessed with the  other patients while I was there. I also think about the examples I mentioned above, where I treated people around me badly because of my depression. People around me are asking me not to get stuck in these thoughts as thoughts of guilt and shame doesn´t build me up, they bring me down. I understand what they mean, but so difficult it can be ...

I guess I'll just say - I was sick.

This is not a feel-sorry-for - post. I just need to process my depression.

#InternationellaCpdagen #WorldCpday!

Hello everyone!

Today it´s the World Cp-day, or Internationella Cp-dagen, as we say in Sweden. The purpose with a day like this is to raise the avareness and knowledge about Cerebral palsy, what it is and how it affects those living with the condition. Since I´m one of those myself, I will tell you a little about my story.

Who am I? I´m a person who is positive most of the time, caring, helpful and talkative. In my spare-time I like being with friends, write on my blog, go to the cinema, go for walks, swim and bike. In other words, the same things as many others do, but in some areas I may have my own way of doing things: How you do things isn´t important, what´s important is that you do it: I feel free when I swim, even though I don´t do  it the the way my swim-teacher teached me! I feel free when I bike, even though I do it on a bike with three wheels! The important thing is that I move myself forward!

My dream is to find a partner one day.

How did I get my Cp?

I was born two months earlier than I was suppose to and during birth I got lack of oxygen which affected the centra in my brain that controls my moves, mostly my legs. I mostly sit in my wheelchair, but I can walk short distances indoors with my walker. I do it regulary as a part of my physical therapy. I have spasticity. Easily explained you can say that spasticity is extra tension in my body. The tension is caused because some nerves are cut off in my brain, so there is no connection between brain and spine. Spasticity makes my legs stiff.  Apart from walking I stretch my tendons and muscles regulary with help from my assistants, because otherwise the spasticity will make them too short and I won´t be able to move the way I want. Stretching is the main part of my physical therapy.

Due to my Cp I also have something called cognitive impairments (impairments in my brain functions):

* Difficulties with daily plan: Make a plan, follow it or change it. My assistants has to help me. When my day isn´t structured my brain get stressed and that takes a lot of mental energy.

* Trouble focusing and concentrating: Even though I can only focus on one thing at a time, my assistants have to help me focus by pushing the start, continue and stop button.

* Bad short-term memory:

How long has the package of milk been open in the refrigerator? Oh no! I forgot my wallet and key at home!

* Sensitive to sounds:

My brain has no filter, which means I can´t shut non-important sounds out. I´m taking it all in.

* Information:

When someone gives me information it has to be given in a way so I can receive it and understand it. The small details that hasn´t directly to do with the context, has to be left out. Otherwise my brain will focus on the details and forget what was really important. That´s because my brain  only take can take  in 50% of the given information, then it´s full. It´s also because I lose focus in conversations.

*Limited mental energy: My cognitive impairments takes a lot of mental energy from me, so I need to rest to save the energy that I have for the day. You can read more about this in my post: "My energy level- the tea-spoon-explanation" in the category that´s named " In English."

Summary: My Cp is a part of me, but I don´t want it to define me as a person! I have a life that I consider valuable!

Thanks for reading!

Hold me!

Hold me!

I am stressed, tired sad and angry.

I know that You are there for me,

but it feels like You are so far away.

I would have wanted a hug now,

but I will have to picture it in my mind instead:

I put my arms around your neck

and draw me close to you.

Don´t want to let go!

I am resting my chin on your shoulder.

I feel your warmth and I am trying to

exhale all the stress, sadness and anger

that is within me.

The tears are burning behind my eyelids.

I am crying.

I just want to be in your arms!

I need security.

My cheeks are soaked with tears.

Hold me tight!

© unika-jag

feb 26. 2015

Hi Everyone!

Now you became disappointed, huh? I mean ... The topic says "Gott och blandat" and  I have no candy to offer. Well, by the way! Yes, I have ! The candy of life! Tidbits from my life, the positive things that happen!

1) I had a meeting with my  dietician on  January 23.  I have lost a total of 3 kilos since November. The legs don´t feel as heavy as lead l any longer, it´s is easier to turn myself around on the bench at physical therapy, easier to walk with the walker as I'm not dragging my feet as much anymore. Found out today that I have a bra that's getting too big.

2) Have had induction of  a new assistant that went well, he starts his work with me on February 2 and most likely finishes at the end of the month, sadly  .

3) An "old" assistant that I had between 2005-2011 will come back to me, but this time as a suppleant. Feels good to have someone back who knows me well, in the middle of everything new.    

4) On Monday, February 3, I will see my psychologist again!   

Worries:

1) My pelvic bone is scew again! Not even a month since last time!     I visited my  physiotherapist 15 January and then it was "wrong" in two places. One reason that it so easily becomes  "wrong" can be that I  the last two times "cracked"/fixed  it just before my period, which causes that it easily goes back in the same position again once I get my period. Another reason may be that I`ve lost weight. The body may react to something happening. I´ve  been through it before. Before I had the swim  the pelvis became "wrong" now and then  due to, among other things, too little movement. When I started swimming  my  body protested, which meant I had to "crack" my pelvis very often, until it got used.  I´m trying to delay " the wrong" a bit by walking with the walker, sitting in another chair, using my knee-blocker,  sleeping in my bed.

Have a nice weekend!

Friday Hug!

Translation of my blog post from november 19, 2013.

Hi Everyone!

I have written about my cognitive impairments and my limited energy in an "academic" way. Now, I want to write about it a in a more earthy / casual way that anyone can understand. My cognition doesn´t work the same way as for a person without brain damage. I start the day with half the energy compared to a  person without brain damage(sometimes even less than that). Everything I do takes both gives and takes energy, so I need to find a good balance between these things.

You can think of my energy in the form of teaspoons, like this:

Get out of bed 2 tsp

Eat 2 tsp

Get dressed 3 tsp

Sit by the computer 2 tsp

Hang out with friends 4 tsp

As you can see, this requires an energy of 13 spoons, but what if I only have 11? I can not use teaspoons (energy) that I don´t have. Spending time with friends is something that gives me energy in terms of being social ., but takes mentally in terms of concentration (my concentration is bad), sounds ( I can´t  shut out sounds I don´t want to hear, I´m  taking in everything ) and visual perception disorder (difficulty with visual stimuli, such as people going back and forward carrying things).

A person with good cognitive functions,  a brain that works "as it should" have an extra battery to take from when the energy level is at the bottom, for me it isn´t the same . I can´t get more energy by resting / sleeping during the day, but what I do is that I save a bit of my daily energy , so that I, hopefully have enough energy to for example brush my teeth in the evening.

Before, I forced myself to for example be social with friends even though I didn´t have my mental energy. It ended up with me crying later in the week, because the energy wasn´t there.

I can build up  a small extra battery , but it will never be as big as for one person without cognitive impairments. To build up this extra battery  it requires longer periods of rest. From several days to one year.

Thanks for reading!

Translation of my post from January 9, 2014:

Hello everyone, especially to those of you who are parents!

I have just been to my family for a week. My dad and brother have probably not accepted or understood my disability, especially not  the cognitive part. I try to give them information, but I´m  constantly questioned and criticized in a negative way. When I ask my dad what time I have to get up in the morning when I'm home, I don´t get a clear answer, just a "Sleep until you wake up", which to me is very vague and unstructured. I´m  afraid I'll wake up late so that the whole time planning doesen´t fit,  which would be extremely stressful for me. He also scolds me up if I according to him,wakes up too late, so my solution to the issue is to try to structure things up myself, which just leads to a lot of stress. I set the  alarm between 9-9.30 each morning. Then dad asked:

- Are you up?

-Yeah, I set the alarm.

- Why?

- For us , so we can  keep up with everything.

- You really don´t need to do that

- Yes, I have to.

One day he said:

It's 3 minutes left until lunch

- I'm going to be late (I got up a quarter too late after my breakfast- nap.  Was alerted about the time that was left until  lunch quite late, need a reminder 20 minutes before. I sat in the bathroom and was wearing everything except the pants when I got the reminder ).

- It´s not my fault. It is  you that  have set the time.

- I didn´t say that it was your fault.

 - It is you that has set the time.

- Yes, I know ... Keep the food warm.

- Stop babbling!

I don´t babble! I'm just answering what you say.

If I tell my father I'm tired  he says:

- You go to bed on time in the night and you also sleep a while during the day.

- I wake up so early in the morning.

- Then you've slept enough.

- No one has slept enough after four hours.

- Otherwise, you would easily have fallen asleep again?

- But I got hungry ...

- That you can´t sleep is probably bacause you fell asleep several times on the couch the other night.

- I do not usually have trouble sleeping if I just slept a while on the couch,  it´s if I have been lying on the couch and slept for several hours in the evening that´s a problem.

If I am happy that I improved my sleep, he can say:

- You can turn and twist everything if you want to (according to him, it's only right to go to bed before midnight., He finds it difficult to be happy for small improvements, so for them I try to be happy  myself and really say them out loud so that he can hear, otherwise he would manage to depress me).

One day I wanted to  visit a friend and I was a little worried about not being able to go there in the evening because I had such a headache all day and I said: - We may need to move the visit, but I hope I don´t have to.

- Why?

- Because I've been looking forward to it.

-From one day to another? To me it sounds that it would have been easier for them to meet you on a friday, but you didn´t want it.

- We  actually discussed several options.

When I tell my dad that I have limited energy and starts the day with perhaps half as much energy as him was due to my cognitive impairments  he asks:

- How do you measure it?

When I say I'm going to need my rest whether I slept well or not, he asks:

- Who said that?

- My psychologist.

One day when we were discussing training and diet I told him that I and  my dietician believe that I do my best that have both swimming and gym- training during the week.

He said:

- Do you think that's enough? You  do anything to avoid working out! Do not want to ride a bike either, then? It is  human nature to be lazy! Then he made up a bunch of reasons about that I thought soreness was painful and therefore i  didn´t  bother to work out, which is definitely not true!

As I sat in front of  the TV one evening he came in and said:

- Why are you sitting like that with your  head? (I always lean a bit to the left) Up with your head! Put your hands on your knees! Put your arms up! Here I am getting slightly sick of listening to him and I´m  also tired because the time is  8 pm so I say:

- I actually sit here!

- I can´t say anything to you!

- It depends on how you say it!

- No, it depends on you!

When I later wanted an orange and wanted to eat it with my  right hand  he said:

- No, take the orange-slices with your left hand!

When I tell him that I have bad short-term memory and give him examples of how it shows he questions my example with - I don´t understand! or - Anyone can have bad short-term memory in the situation you describe.

When I tell my brother that my brain's interpretation center is not working properly  he says:

- It's not about any interpretation center! It's a matter of maturity! Here I got  sincerely sad and went to my room and  cried for an hour. The list goes on ...

I have offered my dad and brother to participate in a meeting with my psychologist about my cognitive impairments so they can understand me better. Dad's answer is:

- Well, I think you have explained it  quite well. I think I understand.

 My brother's response is: - Is it necessary?

Exactly all the details are not included here. The post would be too long and I can´t  write anymore right now. I want it to be clear that this is my personal experience of the situation.

Thanks for reading!
 

Since two of my friends asked for a blog post in english, here it goes.  I tried to translate my post with google translate, but the translation wasn´t correct, so I´ll do it myself

Make a carreer, fullfill yourself, get married, have kids, get a house, volvo, dog, hobby, get yourself involved in politics, get yourself a healthy body so you dare to show it up for others. Run over others while you are climbing up  your self-fullfillment-ladder. That´s the way you will get forward! Learn to have control of thousands of things at the same time, that´s whats popular in todays society. If you can´t make i tyou are " weird" and you can´t be so, so there has to be universal aid of assistance for these kind of things.  Breaking the rules, not following the stream, is something dangerous and scary!

STOP! If you are thinking this way you are out on dangerous fields! I get scared to death!  You are creating a elite society, a society where only the best have a place, a society where people like me will be eliminated, because I don´t fit in! Who has got the right to decide who fits in or not?

What is it that indicates that the person following the stream is the happy one?

Happier than I am?

Is there some kind of key?

Have you thought about this:

I don´t want to fit in! I refuse to squeeze my unique functioning brain into a box and say: "you must be here, because it´s  the best solution for the society." There was a time when I tried to do it, but that was before I knew that there existed something called cognitive impairments. I tried to force my brain to manage something that it wasn´t able to do, not in that way. I got frustrated and thought:" My classmates manage university studies at a high pace, they can read a large amount of texts, balance home, spare time and new relationships. Why can´t I? Why do I often get sad and tired, even though I really like studying? Why are some subjects so supereasy, meanwhile I  literary have to work like a horse to manage a large  amount of texts, subjects where you have to read a lot? Why am I so slow? Why  am I so sensitive to stress? Why did I get a  preliminary stage of a burnout? Today I know why.

All honor to the aid of assistance, I´m sure  they are good,  but I don´t want any, not right now. Right now I just want to close the bag and accept my cognitive impairments, just the way they are. They have formed me to the person I´m today. I´m getting friends with them!  My brain is unique! Let it be so! I´m unique! Don´t try to change me! There is only one example of me!  Today I finally can sit straight up and proudly write: I´m enough!

To the rest of you:  Don´t give up! The society needs you!  Society gets boring if we all are the same! Those who are trying to put you in a certain box: They are doing it just because they don´t have the knowledge! Don´t give up!