Ett annat 2 års jubileum

Exakt 2 år sedan idag som Pierre  för första ggn gick omkring och pratade och var ute i solen, på näl på besökstiden . 

Mellan 7april till den 23 juni 2015 låg han söndertrasad i hjärnan i ett mörkt rum.

Nu har han ( med anpassat arbete inom samma bransch ) kommit upp till 50% arbetsförmåga (viktigt:alltså med anpassat arbete. Det är långt långt ifrån 50% av hans tidigare arbetsuppgifter. Då är vi nog på 5% )

Just nu tex träffar han jobbet i Falun och är lite konsult. 

Det är stort, och det var en helt fruktansvärd tid ända Fram  till sept/oktober 2015. 

Framåt går det! Och det ska vi typ jubla för ❤️🙌🏽

Såhär såg det ut då

kommer alltid vara sjuk- även om det inte syns , även om jag ser "pigg" ut

I Will Always Be Sick – Even If I Look 'Fine'


I can’t tell you enough how hard it is to have someone look at you and say, “You don’t look sick.” It becomes mentally exhausting to have people look at you and tell you that you’re “fine.” I can tell you no matter how you look at me, I am not fine.

When you live with a syndrome, you live with every symptom that comes with it. When I was diagnosed with postural orthostatic tachycardia syndrome, my life changed right before my eyes. I no longer lived a “normal” life, nor would I ever again.

On the outside I may look OK, but what you don’t see is that my body is in constant pain. When I stand up, you don’t see me getting lightheaded until it’s too late – followed by me being on the ground from a fainting spell. When you tell me that I’m OK, your telling me that my symptoms aren’t there. I can’t show you that I’m lightheaded until I faint. I can’t show you my chronic fatigue until I spend four days in bed.

When you tell me I look OK, it makes me feel like my illness isn’t real.

When you tell me to get out of bed, you’re making me feel like I have no reason to be tired.

I don’t get to have a normal job. I don’t get to shower everyday, just because some days I’m too tired to get out of bed. My life will never be a normal life. I’ll have to learn to live with that.

If you know someone with a chronic illness, don’t make them feel like their illness isn’t serious. It is.

Physical illness or mental, we have our bad days. We have days where leaving bed isn’t an option. Where something as little as taking a walk feels impossible.

For now I try to make the most out of every day. My life will get better, but only with help.

Listen before you speak. Sometimes your words are enough to make or break us.

pushing through pain... varför gör jag inte det bara?...

Original från:

This post may get a little soap-box-like, but it’s something I need to talk about because it’s become a huge issue for me.

So, most people have heard the phrases “pushing through pain,” “no pain, no gain” and similar ones.

But when you have chronic illnesses or any illness that leaves you physically or mentally, bodily exhausted these phrases are… Well, rather annoying and very, very wrong.

It’s something a doctor or specialist wanting you to do graded exercise therapy (GET) or start physical exercise would say: “You need to learn how to push through the pain, push past it and you’ll get stronger, control it and not have it control you!” 

Which is why we now have thousands of people who tried or were bullied into GET or a exercise routine and have become severely more debilitated and set back health- and body-wise years.

Because for many of us, pushing through the pain simply doesn’t work. Pushing your body to do anything more than it should can have devastating effects on your health and body. It could push you too far and completely disable you for days, weeks months or years.1

Our bodies aren’t like a healthy person’s. They cannot cope with everyday tasks, let alone 30 minutes of cardio and physical exercise and the strain it puts our muscles under. Cannot cope with the moving, lifting and shifting our body’s need to do when exercising.

Our bodies will simply revolt protest and then literally disable themselves. And us. Because they should never ever be put under this kind of strain.

“Oh, but if you exercised more you could walk better, it’s because you don’t walk a lot that you can’t walk well, try walking more and you’ll be fine again..”

Nope. Nope with a massive dollop of, “no chance in the world, no way and never ever” on top.

We are sick. We are too sick to do washing up, brushing out hair, to get out of bed. To sick to eat, read, watch TV, write. But exercise is going to help us?

Would you say that to someone who has the flu, viral infection, measles, meningitis, sepsis… Would you say, “Oh go for a run, that’ll cure you!” It would never even be suggested! So why to us? 

Is it because our lack of body ability annoys you? Frustrates you? Are our limitations are seen as lazy as our illnesses last longer than a few weeks? 

Chronic illness is just that. It’s chronic, it’s all day every day and mostly forever. We are never ever going to be cured, not unless a super drug is invented. Which we would love and rush to have because we do not want to be like this.

To be too ill to do anything. To live properly, to do anything without it making us even sicker or having a massive flare. No one would wish that for themselves. It’s not exactly a childhood dream… “When I grow up I want to become sick, lay in bed all day in agony, exhausted, living in guilt that I am unable to be the mother, lover, sister, wife, daughter that’s expected of me and I want to be, and not able to do anything without causing my body to revolt against me.”

We are sometimes even subjected to this kind of thing in our own support groups and forums. Someone reaches out for help or support in a post, at their breaking point, in so much pain they’re devastated both physically and mentally. And so many people reach back and help, and are there and in joint understanding of comfort and words of support.

But then… someone comes out with this for this person reaching out for help: “Oh well, I don’t let the pain control me. I control my doing stuff with my kids/partner/job… I push through it and it’ll never ever beat me!”

I sit there looking at the comment and suddenly I can think of something I could push… And it ain’t the pain.

Some of us are more severe than others. Some are able to work still, or do things that others who are a bit more severe cannot even think about, let alone physically able to do.

People need to realize that just because you may be able to do something, that doesn’t mean others can. And it’s not because we are lazy or can’t be bothered but simply, we cannot. Much like a lot in life, not just illness.

I am definitely not suggesting any person’s illness isn’t just as important or as serious as mine, or should be taken lightly or without the same kind of respect and recognition. Just that for a lot of us, pushing through the pain is simply not an option. And we feel awful enough about it without judgment or phrases that just do not fit into our lives, our bodies or world around us anymore. 

We don’t need to feel any more isolated, alone, misunderstood or mentally anguished than we already do.

Please think before uttering such phrases, suggestions or comments to someone who is chronically ill, for us living in a world of such pain and our loved ones who are also affected by it.