Pet peeves!

I have a lot of patience, and it takes a lot to really bug the hell out of me. But there are some things that literally makes my blood boil and steam come out of my ears, and I'm sure others have their own list of pet peeves, no matter if it's people living with a chronic condition like I do, or someone at full health and a normal life- whatever normal is... 

Here are some things you should NEVER say to me if you want to only see my good sides, and I dare say you don't want to see my bad sides, so pay attention.

NEVER EVER comment on my weight! I am fully aware that I carry some extra load, but you know what? I'm happy just the way I am and beauty comes in all sizes! I'm confident with who I am and I do wear a 2 piece when I go to swim, and no one points or make rude comments. I'll never call anyone a skinny bitch, so don't you dare calling me fat! For your information, I constantly battle with low appetite and barely eat! If I was to eat any less than I do, I'd basically live on air. 

DO NOT comment on how I live my life! My condition makes it impossible to know from one day to another what I can do and not. I do what I am able to do, no more and no less and what I do varies from one day to another. Sometimes it's an achievement to get up, take a shower and get dressed. Other days I do all those things just fine and even manage to go out of town for other things than medical appointments. 

DO NOT tell me to exercise more! My body can not tolerate exercise as in physiotherapy or going to a gym, it only does me more harm than good and is very likely to have me in bed for days afterwards. I don't have enough energy as it is, and exercising only takes energy, giving me nothing in return other than pain flares and debilitating fatigue, and in the case of the local gym: a neck injury that severely limits my ability to even be upright. I do however try to live as active as possible, as in going somewhere manually rather than taking the car when going somewhere within my town on the right side of the railroad. 

DON'T EVER call me lazy! If you want to see lazy, go to Wal-Mart and watch the people shopping there in their pajamas! They most likely have no medical reason to stay in their pajamas all day, yet that's what they do and don't even change clothes when going out shopping. I don't judge people, but yeah, if you want to see lazy, look at healthy people shopping in pajamas instead of judging someone with a medical condition! You'll never see me out in public in a pajamas, nor will you see me munching on chips all day while farting and watching movies! There's a huge difference between being lazy, or having a medical condition that severely limits your ability to live a very active life! And for your information, I do not spend my days farting and watching movies! 

NEVER judge me for using a wheelchair to get around! You don't have to be paralyzed to use a wheelchair, you can also use one because of severe pain, fatigue and instability. I didn't buy my wheelchair, it was provided to me through my Occupational Therapist and the wheelchair center, and to get an "active chair" like mine, you need to meet certain criteria, which I obviously do since I have a lightweight active chair, which is quite expensive. They do not give those out randomly to people! The wheelchair helps me greatly, I can be more active in the wheelchair and be out for longer, and cover greater distances than if I'm on my feet. I can only stand up for a couple of minutes before I feel really unwell. 

DO NOT blame things on my medication, or say it's wrong of me to take medicines to manage my condition! The medicines I take are not something you can buy over the counter, nor are they something doctors look upon lightly. They are heavy duty and the type and dosage is adapted to fit me, and it took a long time for me and my doctor to decide which was the best for me. With it I can function better, I can think more clearly and physically function better. Without my medicines, I'm a useless pile of ouch that you can barely touch without making me scream from pain, and I have a high pain tolerance, a broken bone barely makes me flinch! 

DO NOT say using bracing and splints is wrong! Using joint supports is common practice for Ehlers Danlos Syndrome and I don't know anyone with EDS anywhere in the world who doesn't use bracing if their skin can tolerate it! The important thing to remember is to only use the bracing as much as you need and not more. If used right, bracing prevents injury, delays long term issues such as arthritis and improves your physical ability to do something, be it enabling you to use your hands better, or be it preventing you from constantly spraining an ankle when walking. Bracing can also relieve some of the pain. 

If you truly care, you're more than welcome to come with friendly suggestions of things I could try, things that may have helped you if you live with a similar condition. But don't ever say I SHOULD do those things, or judge me if I choose to do things my way! There's a pretty damn good reason I do things the way I do them- I live in this body 24/7, this is MY body and MY life. And unless you live in MY body, don't tell me how to best manage MY condition!  

My life is a fine balance act on the edge of a cliff. A step wrong and I may suffer really bad for a long time. I have a team of medical professionals around me. And the way I live my life and do things has been approved by the medical professionals I have on my case. 

Pacing is the key, and listening to what my body is saying, and trying to keep my hip in place when I do get in and out of the car when driving...

I also have a frog living in my chest, also known as possible case of POTS or dysautonomia, this further complicates things a bit and forces me to be extra careful so I don't pass out, or fall due to a big jump in my heart rate, especially when I stand up. 

Extreme fatigue increases the risk of falling and injuries, if you can't remember what I wrote about exercise, just go back and read it again.

So, these are some of my pet peeves... I won't judge your way of life, if you don't judge mine! I only ever give people helpful suggestions, and they can choose themselves if they want to try it or not.

I could make this list longer, but my hands are seriously killing now...

For Norway!

It's been two years since the awful terror attack in Oslo and the following massacre at Utøya. July 22nd 2011, a day that is for ever etched into the memories of those who survived, those who lost family or friends and really a whole nation and it's neighbors, and people around the world.
I still remember hearing about the attacks on the news, and I just couldn't believe what I heard. I wished it was just a bad April fools joke... But it wasn't... It was for real... The work of one fanatic extremist... One who had gotten his hands on firearms and the recipe for a bomb. I know his name far too well, but I am not going to utter it, as that's what he wants. I want to forget everything about HIM and just remember those who stood in his way that day. His victims should have never been victims, they should still be alive and happy, but they aren't, they were brutally murdered by an armed madman, a raging lunatic.

Today I think of Norway, and my heart goes out to those who lost someone in the attacks, and I'm thinking of those who died, honoring their memory.


The song below is one by the Swedish singer Laleh, and it's a song the Norwegian people took to their hearts while grieving. Laleh also performed this song in Oslo last year on July 22nd, one year after the attacks. This day and this song is for Norway!

Never forget!

Dealing with the passing of my grandmother

It's now been little more than a month since I held my grandmother's hand until the very end. A month which has been spent physically recovering from the ordeal of constantly worrying, jumping high every time the phone rang, sleeping light and traveling back and forth between home and the hospital.
I've also spent the past month mentally recovering from all the worrying and trying to come to terms with the fact my grandmother is no longer physically with me.
Her passing has left a huge empty void in my heart and there's so many things I wish I had asked her while I could, but of course, as ever so often you think of things to ask the person when you can no longer ask, things you could have asked at any time before, just by lifting the phone and dialing their number, but never thought of asking until it was too late.

The past couple of weekends has been spent going through things at my grandmother's apartment and preparing to empty it so it can be sold. It's been physically hard on me with the traveling. I could have stayed at home, but I wanted to go... Just so odd being there without my grandmother standing in the door waiting as you come down the small flight of stairs from the elevator, she was always standing there in the door when we came to visit.

A couple of nights ago as I was about to go to sleep, I just looked through some pictures on my phone and came to a picture I took in late May of my hand holding my grandmother's, and then it suddenly hit me like a ton of bricks: I can never hold that hand again!
And I cried... I cried a lot for over an hour, in the middle of the night as the sky began to get lighter outside my windows.
I took that picture about two weeks before she passed away, in the evening we thought would be her last as we had been called in to wake. I got to see her three more times before she passed away, the third time being her last hours alive, the way she must have wanted it seeing how she waited until I was there, and waited for another hour or so after my uncle had gone home so she got some time with just her only grandchild who she knew could handle being with her until the end.

On Friday we'll hold the funeral for her, it's taken long to get the funeral exactly the way we want it and believe she would have wanted it due to it being summer time and the Salvation Army Captain holding the funeral service was on vacation until this past weekend. We wanted him specifically as we got very good contact with him and he even visited my grandmother while she was in the hospital, and he was deeply honored to be asked so we waited with the funeral another week so he could be in charge of the memorial service.

It's been a very emotional week this week as the funeral approaches, been breaking into tears more this week alone, than in the previous two months put together. Trying to find strength for the funeral on Friday, I know I will cry a lot, and for a good reason... Lizzie was the best grandmother you can imagine! I feel honored to be her grandchild and call her my grandmother! Even with her only getting 16 years of actively being in my life, it feels like she has always been in my life because of how good contact we had during those years we got. Those first 11.5 years my life, I always knew about her, I just didn't personally know her.

There will always be an empty void in my heart, missing her voice, visits and physical being. But her memory is forever with me and I cherish every one of those memories!