Lifslevande / Alive

I don't really know what to write that makes you all want to keep reading my blog.... It feels like all I'm writing about is hospital appointments, KT and the ups and downs of life. Thouh, all of this is really my everyday life....
I do have alot of hospital appointments; this afternoon two of them. It's Wednesday and I have allready had three appointments.
This week alone it adds up to...., lets see..., five. Then my therapist is on holiday so that is one appointment less. I just can't believe that I spend so much time of my life in the hospital.

Thouh, I was thinking, I must divide the appointments into categories. Wellness and Illness.

Wellness:
These are things that keeps me well, that makes me maintain the functions that I have and things that helps me "survive". These are things that gives me a better quality of life

-Hydrotherapy/ aqua exorcise twice/week
-Therapist once/week
-Nurse once/week
-Occupational Therapist, Carin once every fourthnight
-Occupational Therapist, Katarina once/week
-Physio Anna once every three weeks (and at aqua)


Illness
These are things that I have to do, o people that I need to see to stay more or less- alive. Doctors I need to see not to get to much worse and things I need to do to monitor my health.

-Vascular surgeon
-Reumatologist
-Neurologist
-Orthopedic Surgeon
-Plastic Surgeon
-GP (Husläkare)
-Bloodtests
-Nurse at the medicine clinic
-Occupational Therapist, Karin R
-Occupational Therapist, Pernilla

When I look at it like this, it feels less depressing!! Moste of the things I do regulary are things that helps me feel good! They are things that makes me better, in a away, and things that boosts my health. Yes, they are still things that I have to do to feel okey. Things that I need to do to maintain the muscles that I do have, the strenght that I have and the functions that I still have!

Yes, I do get worse....gradually. Both my KT and my reumatic illness are progressive illnesses. But, nevertheless, the wellness things that I do helps me to slow down the actuall progress.
For exampla; the hydrotherapy helps me to maintain the movment that I have in my joints, it helps me build a bit of muscles but in a controlled way. Did you know that you only put 12% of your body weight on your joints when you are in neck-deep water?!? So, it helps me quite a bit! Also, the freedom of being able to move a bitt better is fantastic!!

My therapist she helps me to saty sain.... With a body such as mine, and with the things that keeps happening with it, I do really need someone to talk to. Someone who knows alot about KT, who knows alot about how a body works and some one who wants to listen. Gunilla is fantastic! A therapist does only have sessions of 55 minutes, but she always books me for 1½ hours every week. She knows how much I need to talk to her, need someone who can help me see things from a different perspective and who sometimes can say "hey, Marie! Look it's not really as bad as you think". And sometimes she says "Marie, you need to wake up and see that your body isn't fasioned the way most peoples are....".
I have a hard time accepting the fact that Im looked up in a body as ill as mine is. How I feel inside, who I am inside doesn't really rime with the body I live in...

My nurse Ewa  helps me to keep track on my blood pressure, my weight, what to eat to feel better and so oe. She is also a very needed support as she knows alot about how a body is supposed to work. She helps me to understad what I can do to make things as good as they can possible be!

And my occupational therapist Carin, she is fasntastic! I have only known her for about 6 months, but she is such asn help! She helps me with things i never, ever thought could be of help to me! Such as apps for my iPhone! And a thing suc as schedules to get things going; not forgetting medications, not to doublebook appointments and to give myself tim to be and to enjoy life!! She tries to encourage me to fins ways that can help me to a better life, a life with as much quallity as possible! Carin helps me to find things that can help my everyday life; aids for my kitchen and so one. She also helps me suggest technical things that can make my life alot better!
The iPhone is one of those things as well as my notebook. Another thing that might help me alot is an iPad. Keep on dreaming Marie!!!

It really helps to catagorice things! To see that not everything is there to keep me alive, many of the things I do every week are things that I do to maintai the functions that I do have! And also, may of the wellness things are things that I kind of enjoy! Such as hydrotherapy!!!
Maybe you should also put things into perspective?!? See that not everything you do, conected to your illness or your syndrome, has to do with being ill!

Lord, time just flyes by!!! I need to get going! My first appointment is in one hour and I need to get dressed, take my lovely little Louis for a walk in the rain and then take the 7 minute walk to the hospital. Hopefully I'll have an hour inbetween the appointments and my plan is to sit in the cafeteria; read, have a cup of tea and a lovely sugery cake!!

                                  
                                                         A little bridge over a creek in the forest