When I die I do not want to have any regrets because of the choices I made. I have always thought that prio one is work as much as possible. Felt that when I am not able to work I have less worth than a rat. And no, we are not going to ask any foxes what a rat would be worth to them. I have always been obedient and answered “I prioritize my kids” when all sorts of therapists asked me that. But inside I have felt that I have to be responsible and show up at work and have therefor chosen to prioritized work. Getting enough energy so I can show up at work. Wrong choice I say…
Saying and knowing one thing but doing the opposite
Changing your behavior and your priorities is just as hard. Ask a person that smokes. Or drinks, or doing drugs. It is ironic that I who tells my patients that they need to prioritize what is important to them, that they need to do things they love. This advice cause you do not want to regret that they did not to who or what is important to them the day they die. Of cause I sometimes put the words another way when it comes different persons, but this is the essence of my words.
But it is easier to tell someone how to reason one way, especially when you read a lot of literature about it in your education, but self doing the opposite… I know exactly what to choose to do what is recommended by researchers, but it is so hard to do. For me the biggest obstacle have been the expectations from the community, the society we live in. Or rather, what I believe the society asks of me.
Changing your behavior or habits
They say that it takes twenty times do make a change a habit. Like workout for twenty times before it becomes a habit working out. But how do I reason when I need to change my attitude? Should I count the days when I have chosen to save my energy for my family and not for work? I should know since I have read a lot of phycology. What I know is that changing my priorities takes time. It has taken me at least 9 years. But I think I am ready to accept it now.
Acceptation from yourself, an important part of change
To accept your situation is one part on your way to change. And it is you to have to accept the situation, and acceptation from the ones who is close to you. Someones needs to accept an illness, someones needs to accept something else. I need to accept that my energy is not enough for both work and my family. And when I die I do not want to feel I have made the wrong choice. I think I am ready to accept that now. I think. I hope I think… I think my husband has realized and accepted that I probably won’t be able to work in a long time sooner than I have.
Acceptance do not mean that you have to like it
Sanna talked about acceptance last year at the Yoga Weekend i attended. The Yoga weekend two weeks ago she said the same thing again. To be able to cope with something you need to accept it. But accepting is not equal with liking it. I do not have to like the fact that I can not work. Not a bit. But I have to accept it. I will talk more about coping in a post sometime in the future, but accepting is a problem-focused coping mechanism.
It is about time that I listen to my own advices now. I will listen to my body and accept what it can or what it cannot do. If it tells me that it cannot both be at work and functioning at home I have to choose to have as much energy as possible at home. It is a “have to”. And now I will be gone for a couple of minutes to feed my dog. I am back. Do you not think I am fast?
Changing my way of thinking
As I said, it has taking me 9 years. 9 years of working, not working, working, not working and so on. I have had the same work at the same ward. 2016 I changed from working in a ward where we the patients are hospitalized to a daycare unit. The regular working hours and not having so many heavy work activities made it easier for my dysfunctioning body. Yet my bodyfunction has gone worse. Hopefully because of viruses and not because of new plaques in my brain. This worsening has precipitated me accepting my symptoms and what they have led to. I need to take yet another break from work.
My neurologist wants to examine me tomorrow. I know that the visit will probably lead to me getting a higher degree of absence from work than I have on my paper now. What else that visit will lead to I do not know. What I know is that this has made me really low. Having no energy, getting more pain for just shorter activities (as sitting at the dinner table for supper…) and having body parts that refuses to work after an hours use (despite shorter breaks every 20 minutes) together with me feeling low is not a good combination. Therefor my absence from this blog. From friends. From family.
I do not want to die with regrets
Thankfully I have lots of years left if nothing else happens. And if it is something I know it is that “nothing else” tends to happen. So it is about time that I start to prioritize right. The day I die I want to die with a smile because I now I lived well together with the ones I love. I want to know that I was there for my kids. I want them to feel that I have been there for them. I want to have seen the world, at least parts of it, and that I have enjoyed life as much as possible.
I know that I will have to plan for being with my family and seeing the world according to my physical status. Maybe I have to visit some countries in a wheelchair and maybe I need help to be able to hold my grandchildren. I am so aware of that. I can accept (but will not like) that but as long as it will lead to me feeling that I am living my life. I have had many telling me that I am coping so well with my PPMS and I always think “you should know my thoughts” cause what I show to people around me is not how I really feel. Or think. I say what I know you should say to not bore others or make them uncomfortable. I try to look perky but I am not.
I need to be honest to the ones around me
It does not mean that I will go around looking dreadful with a sour look in my eyes all of the time. But I need to be honest and say “no” to more than I already do. I need to allow myself not having a bad conscience if I have a date with a friend even if I have not been able to work that day. Me knowing that I had to prioritize my energy to be able to get that date is the only thing that counts. I should not let others thoughts or judgments affect me cause they do not know my struggles inside. Yes, they may think that I am a parasite of the society but I will not care. The last 5 words is something I will have to tell myself over and over again. But I will, I WILL, learn how to.
And here it ended
My energy level was drained when I had written the text above. I did not ge to post it. The text is about something very important and it is an important part of my personality, of how I cope. Yesterday I saw the doctor and that visit lead to me not being able to continue the post I wrote two days ago. That is how life is having a chronic disease.