From a sweaty Norrland to a ragsock day

Sitting at the time of writing and freezing my feet, the cardigan is on and the door is closed, yesterday the door was also closed but the AC on hahah.

Yes, we have at least had three weeks of summer and maybe got to swim in the pool for two weeks here at home. Best buy for Freja who is an aquatic animal, she could lie in water around the clock.

Next week it's time for a hot water bath at the hospital in Umeå where she will be allowed to go once a week, nice for the aches in her body that she has and complains about quite often.

I'm also waiting for a call from the occupational therapist so we can discuss aids such as a chair to sit on that is more comfortable for the body, what rights we have I want to highlight, meaning what help can be obtained to make life easier for her.

In my world, this is not about living now, but about building life in the future when it comes to this disease in the ailments, so to speak, everything else you must of course live in the present and seize the day.

But to prevent, to facilitate, to make sure that she has as little pain as possible, to spare her a possibly difficult time....

Everything related to the disease is going blindly...we know NOTHING, NOBODY can say how everything develops, there doesn't need to be any worse difficulties either...that's what's hard in my world, not knowing. ..

I'm in some online groups to learn and educate, hear other people's experiences...for better or for worse....it's sickeningly hard and reading about parents grieving their deceased children who have only turned 27 years old.. .how the hell am I supposed to know if I happen to the same thing I think, I refuse that, I won't allow it! Therefore, 72 steps ahead and intend to do everything in my power to create as healthy a body as I can for Freja so that she lives until she is 90 years old at least!

It is an internal stress for me, but the diagnosis is also new for me/us and it takes time to get to know it and become more secure, therefore this stress with...the uncertainty kills and my heart bleeds when my child complains of pain and other things in the body messing with her...I'm just a mother who cares and loves my child deeply.

Nah, time to water the green plants at home so you can touch your frozen feet....Freja insists on bathing despite the cold...she's crazy hahah