A chronic disorders is in general invisible 😴🤕

Hi ❣ It’s so nice to see you,- like always 😊 I hope all is fine with you all 🧡

I have a chronic disorders, but most people I’m sourrende by don’t know that,- because in general I’m actually fine and it doesn’t “shows” outside at my body that I have a chronic disorders either. And in general I actually don’t talk or tell to much about the disease, and the disease doesn’t bother me to much, in general.

You can’t see the disease on me on daily basis, and in general it doesn’t effect me to much on daily basis either, so in it’s own way it is “invisibl”, except from when Im not very well. And,- when I’m “sick” I’m actually home in my bed. Because it’s “knock me” totally out. Natural enough.

An other thing is that I don’t want to be the illness, I just have it and for me that’s quite a bit different. Many people have this tiny bad habit to not be able to see the difference between be and have. I’m not the disease, I have it,- and in general I’m actually not very sick anymore,- but there are days and periods I still do struggle with the disease. Like I have done in July and August this year. I can “brag” about that I have priority my children, and that’s also true,- but I have also priority my children because I can’t priority “everything” at the moment. I’m actually not to well at the moment, but I’m trying my best to be well 😊.

In general I manage my work and my daily life, but then sometimes,- like I mention,- it’s totally knocks me out 🙄. And lately it has knocked me very much out, but I have still managed my work,- but that’s more and less what I actually have manage too. And I do feel like I’m a squeezed orange now, and soon it’s not very much juice to squeeze out anymore. I don’t like that feeling to be honest 😔.

Many call the illness I have for ME/CFS, also called for PEM. And for 14 years ago it I was probably in that category. I was in my bed for “just” 6 months, something that’s not to bad with this kind of disease. And last time the disease “knocked me” totally out was for about 6 years ago, and I “enjoyed” my bed for around 3 months. In general I have been very well, and had just bad days or shorter periods, and very good years, lately 😊.

I can quickly become very exhausted and burnt out, but I often know what is causing it to happen. Mostly I manage to be in control so that I do not get tired of fatigue and burnout, but not always. 

As most of us know, we can not always control external events.  And this year there have been various outside events that I have not been able to control, which in turn has led to me having a very low energy level now, – or “flat battery” as I call it. Or maybe like an empty ballon 🎈 .

And it’s low, my battery, very low, but lucky for me, still not empty…….yet. But it can soon be empty now, so I’m very careful with what I’m using my energy and “body battery” on at the moment. I need to do some priority so I don’t get totally empty. Because if I come there where I’m totally empty, there’s no battery left it will takes a bit longer time to “refill” it,- if I can explain it that way. And I don’t want that.

It can actually take months, maybe even years to “refill” up my battery and energy level,- and I don’t want that. I really like my bed 😊,- but for more normal sleep and maybe some other fun activities 😉. But not to stay there, in my bed, like “forever”.

I have enough “battery” to manage my work at the office, and also a bit in my home, and also be a taxi driver for my young adults children at the moment. And do the most important things in our home. My children are helping me, because they know how it “all is” when I m on a “low level”.

But,- that’s more and less what I have manage the, maybe, two last months now. And I know I need to be very careful now,- if not, if I m not careful now, I can’t be able to work, but be on a sick leave,- and in bed with pain. I really don’t want that to happen. I have been there,- and that was not very fun at all.

A chronic disorders sounds very serious,- and of course it in general is. But at the same time,- it’s completely possible to live a “normal” life with a chronic disorders. It’s not like you are sick all the time. It depends on what kind of disease it is. I’m in general not sick anymore, but then it comes days or periods where I’m struggling. Like now.

Its pain in my body, all over, and I feel like I’m burning under my skin, or like I have fever, but I still don’t have any fever. I’m very, very tired and I can’t manage to much or to many things. Noises and sounds is not very good, and the light from lights can be “a pain in the ass” too 😅. For some strang reasons are not the light from the sun to bad.

It’s feels like I have “the day after” without drinking any alcohol and without the headache, or hangover. Just feel like my body has been “knocked down”. And sometimes even to go to the toilet can be a bit of a “travel” 😅.

It’s so much better to explain how it “all” feels when I’m “not on top”,- but when I’m not “on top”, I haven’t very much energy to write or talk. So,- then it’s difficult to explain it at that time too 😊. But I’m trying my best here to explain,- because I know in general you can’t see I’m not feel very well. And I know that. (…. and I’m vain too 😅, so I try my best to look okay even at not my best days. Of course I can forget to be vain on my worst days, but I have some days that are a bit comsi comsa,, and that days I do my best to “believe” I’m okay and be as vain as I can 😊. )

I’m not sure why I got this chronic disease, but probably I did pressed my body, my brain, my limit fare over the limit 14- 15 years ago, and then I got an pneumonia,- and that’s was probably enough for my body and my immune system. It couldn’t handle anything more and put me on a big break and timeout.

In general the doctors and other health professionals do not fully agree on the cause of the disease.  It is researched, written, documented.  For me it is no longer important to know why I got sick, for me it is important to know how I can avoid getting so sick again that I stay in bed for weeks and months.

I know like shopping centre is not a very good thing for me to stay to long, or at big parties and events with a lots of people and noises and sounds. To much alcohol is not good either, so I don’t drink alcohol very ofte or to much,- but yes I take a glass of wine now and then, even more if I have a good period 😊.

I need to have in general about 8 hours sleep, but can manage less for a couple of days. I need to eat regularly, and I also need to do some kind of workout regularly too.

Today it’s one of the better days during this “not to good period”,- and that’s why I’m able to write too 😊.

I think I m not “on top” at the moment because of the situation we are living in. It has been people in my home since February,- and then not just my kids. It has been different kinds of changes and challenges, small as well as big during this corona- situation.

I have helped to move out and in many times during this last months,- and just not into my home, but also helped other people with their moving.

It’s not “silent” in my home anymore,- and I’m in general never alone 😊. At the office it’s a lots of music and different noises and sounds,- something that really are a “energy eater”. Well for me at least 😊.

I have asked the company about working from my home again for a while, just until Im a bit better, because it was a bit better for me to work from my home, special when it comes to all the different sounds and noises as are the office at the moment. I don’t know if the company will allowed it, but I hope so. Because I know it will help me to be better sooner 😊.

And at the moment I need to priority what I can do and can’t do/ can use my energy on/ can not use it on. And I don’t like that to much.

For example I don’t priority my friends now, not in Spain, not in Norway, – and that’s not just because it’s a lots of traffic in my home, and my priority is my children,- but also because I have no energy to do it. Chat up or meet up, or even texting.

But okay that’s the way it is,- I know that if I’m not going to empty my battery totally now,- this is, unfortunately, one if the things I can’t use my energy on. One of several things I can’t priority if I want to be better. It doesn’t feels very well, but that’s the way it is. Hopefully I have some few friends left when I have a bit more energy and battery then I have at the moment.

It’s so much more I could and probably should “explain” about this disease and how it is when I have this “not to good days at all”. But like I mention,- it’s not so easy to explain it “all” when I do feel okay, because then I feel fine and in some strange way can’t (or just don’t want) to remember the not to good days.

So,- that’s also why I haven’t been writing to much lately,- it’s not just because of the priority to my children, but also because I haven’t been feeling very well,- and needed to choose to not use any energy on my blog too, unfortunately.

Hopefully I will be better day by day,- and “chat up” with my readers as well as my friends 🧡.

I wish you a great day or evening wherever in the world you are 🧡. Thank you so much for using your time and dropping by my blog today 🧡.

See you soon, – I hope 😊.

Me,- not on my best day, but not on my worst either with a “low battery level”.

I’m not complaining, but trying to explaing how it is when I’m on a flat battery level 😊. I know I’m actually very lucky and have in general most “normal” days with a “flat battery disease ” 🥰. But lately it has been very low power 😅, but I’m trying to “refresh” my bodymotor as best as I can 😊.

#chronicdiseas #health #feelinglucky #positivefocus 💚🍀😊

2 thoughts on “A chronic disorders is in general invisible 😴🤕

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s