Being called fat by my doctor, behind my back.

You know that feeling of hitting rock bottom? THE rock bottom. Your own, personal lowest. That SHOCK of not understanding what happened, how it happened, or how in the world anything could ever get better.

I’ve felt that before. Or I thought so. But I kept on falling.

Now I know that where I have been before was not it. This is. This is as low as I can go. The understanding of that, and actually knowing to 100% (unlike before) that this is it has made an impact.

The last month, I’ve been in bad shape medically and it’s under investigation. Or so they say… By now, I know better than to trust doctors to actually help me.

My talk with the doctor, the first one that sent me to really get checked up, went good. Or so I thought… I told her about my problems with my weight, that it doesn’t matter what I eat/don’t eat or how much I move, I gain weight. And she listened. Again – ‘or so I thought’.

There’s a website, 1177, where you (in Sweden) can see what doctors, nurses, etc, write about your meeting with them.

Even though I talked (I, not we, she said nothing back, just nodded) about my weight, we never went in to details. So imagine my surprise when I logged in to 1177 a few days later and saw her writing about me being fat. Yeah… fat. She never, not once, said ANYTHING to my face, buy she wrote that about me.

Here’s the thing – yes, I’ve gained weight, yes, it has been gained around my middle, yes, it is 17kg that has been put on there, but there is also the ‘yes, I’ve asked doctors for help, I’ve BEGGED them for help’. I’ve been asking for help since early 2016. NOTHING!! “Nah, your thyroidmedication is working fine!” THAT’S what I’ve gotten from doctors’ working in the very same office as her. Nothing. And as I, agaaain, beg for help, I’m not met with anything more than “we’ll check your thyroid” and then reading about being fat…

If you’ll look below, you can see a new photo of me. All that belly is what I’ve been begging for help for. That is also what I’m being called fat for. Overweight? Absolutely! Fat? Not really.

This photo was taken yesterday, and the weight is the exact same as when I went to see the doctor. (Yeah, I need to clean up, but my back is hurting like hell so it’s just gonna have to wait a few more days.)

So, now what do I do? I don’t know. I don’t even know if they will bother to keep trying to figure out what is wrong with me… They didn’t care last time… I was even told I wasn’t allowed back for the same symptoms!!

Tomorrow, I will go to the gym. I will jog on the treadmill. It’s not something my body is really up for (due to my POTS and way too many tachycardia “episodes” lately), but I am VERY close to desperate. No, you know what, I AM desperate. I can’t go on feeling this bad any longer. I just can’t. This is me, doing whatever it takes, to TRY to get out of this crap situation, because doctors don’t actually care…

Fooood!!!

Oh, how I love food!!

I really do. I love food! People think that this is why I gained weight in the beginning. It’s not. That would be my thyroid. But it’s still easy to eat way too much. I will gladly go back for more.

Since I have POTS, I have to really think about what I eat and how much. Right there is “no more seconds!”… No sugar. No rice. No pasta. Very little potatoes of it’s not late and I’m not doing anything after eating.

This is mostly what I eat:

It’s really good food and I really love it! (I do, however, miss lots of yummy things). As for my weightloss, well, it doesn’t suffer from the food I eat 🙂

Today, I actually had pizza since I’m coming down with a cold and I feel like crap. I had it at ~ 16.30 and now, at 19.50, I’m still flat on my back on the sofa trying to function.. I’ve been trying to go to bed since 18 but my body just will not cooperate. I’m gonna try again when this is posted.

Tomorrow… I’m thinking chicken. Since I’m not well I won’t be doing anything tomorrow night, so there will most likely be mashed potatoes!!

Good night 💖

My POTS does get worse

I’m making a list (and checking it twice) about things I want to share here, and today it is about POTS.

I wrote yesterday about the long walk in/to Copenhagen, 17km. The road to this has been a long one (pun intended). I didn’t start out by walking that far. My POTS made it very clear that it didn’t want to let me do it. Years ago, Before I knew it was POTS I had, I thought I wa jut lazy. That’s what doctors told me. I didn’t feel lazy, but I couldn’t do the things others did, so I figured they had to be right.

I didn’t want to be lazy, so I started walking a bit. Difficult, and no fun! At least at first. I just walked around where I lived, and it was just the same all the time. When I moved to Malmö, I continued to walk around where I now lived. Then I started going on longer walks. Not very long, and always the same way the bus went. That way I just got on the bus when it got too much. And I just continued like that. There were many, many times I had to call to have someone meet me at the bus stop because I was in such bad shape.

As the years went by, the walks got longer. And longer. And last year was the first time I could go on one long walk after the other. I have worked for years to be able to do this and I am so happy for it. My POTS does get worse for a while after I’ve been walking, but it’s worth it. I do plan for the walks. What I have on, what shoes I will hav, socs or no socs, what food I eat before and after, water, what I will do when I get home again etc. My life is all about planning, it’s the only way I can manage my days.

When I’ve been ill for a while, and off my feet, I need to start with shorter walks again, but then  I can go for longer ones pretty quickly again. The longer I’ve been out, the longer it will take to get back to “myself”. But I do it 🙂

I have worked SO HARD for SO MANY YEARS

Today I went for a walk. It was quite long. A whopping 17km with roughly 25000 steps. My feet hurt now… and I have a blister… and I’m cold… And I’m happy.
My POTS started acting up pretty soon. It was really windy and then the air at our first stop (indoors) was really bad. So I’ve had several blood pressure drops during the day. Every single time I went inside, it went south. It has gotten to the point that I can’t even eat without passing out now.

However, the walk was pretty nice. We went to Denmark, got off the train at Kastrup (Copenhagen Airport), then we walked to Field’s at Örestad (I can’t type the danish Ö on my computer). After lunch (fish & chips) we walked aorund to have a look, and then continued north to the central of Copenhagen. We bought something to eat, then headed for the bus back to the airport to take the train home. We were away for almost 6 hours and 45 minutes. This is where we walked:

Like I said, roughly 1,7 metric miles (if I have counted correctly, it’s almost 11 english miles).

We really wanted to stop at a nice coffee shop to have a snack, but ended up Walking by a total amount of ZERO. Or, actually, we saw one, but they didn’ have the kind of yummies we like 🙂 They did, however, have this outside the door:

I have seen those signs so often on instagram, now I finally found one myself!

I love the danish mail boxes:

And the entrance to Tivoli:

Al-in-all, it was a really great day. I am SO happy that my new medication is working so well that I can actually do this! I LOVE going for long walks. I have worked SO HARD for SO MANY YEARS to be able to do it (because of my POTS, it is NOT easy…) and I am so happy that this medication helps me continue ❤

Those were the photos from today, if you want to see a few more from Denmark, you can see them on my instastory at @jeas_wellness 🙂

“At least it isn’t cancer!”

What follows below, is  a sort of… open letter, I guess I should call it. It is one that I will translate to Swedish and give to certain people who are in need of an attitude change. Perhaps I should also tell them that they need one… It is a bit long, but please, stay with me. And if you would like to add something, leave a comment! If you have  question, leave a comment.

I’m going to introduce myself in a minute. But first, I want to ask you a question. I would like you to answer it out loud. There are no wrong answers and there are no answers that will upset me. Just say the first thing, or things, that comes to mind.

Are you ready?

When you look at me, what do you see? It is a serious question, what do you see?

My name is Jeanette. I am 34 years of age, and I have sinustachycardia and POTS. POTS stand for Postural Orthostatic Tachycardia Syndrome. We’re gonna stick with POTS.
When I look at you, I can see what colour hair and eyes you have. I can see your taste in clothes. I can see many things, but those things doesn’t tell me anything about you. I don’t know if you’re happy or sad. I don’t know if you’re having problems at home. I don’t know if you’re allergic to anything. I don’t know if you took a painkiller an hour ago. I don’t know what you had for lunch or breakfast.
I know things that DESCRIBE you. But I don’t know YOU. I don’t know anything at all about you!

When I go to see a doctor, or anyone, I become what the other person see. I’m the blonde one with blue eyes and plain clothes. I’m the smiling, and laughing, and obviously happy, and positive one. This is the label I get. “Label” sounds a bit bad, and that is why I chose that word. I get a label and anything that I say or do that doesn’t fit in to that label, is treated with suspicion or apprehension. Misstrust. Am I really sick? Can someone who look as happy as I do be sick? No, surely it must all be in my head? If I were really sick, would I be able to be that happy? Would I really smile at all times? Would I bother to wear make up? Would I really be able to sit there, in front of someone, and look like one of the happiest people they’ve ever met? No! Impossible!
This is reality for me and others like me. People who are sick, but on the inside. It doesn’t show. Invisible illness. It can be mental illness, physical illness, or both. “Not showing” does not mean “not real”.

We get the “No! Impossible!” all the time. And it is more frustrating than you can imagine! But even wose are the comments we get from people that are here to help us, or from family and/or friends. What follows here, are things you should never say to someone with an invisible illness, or someone you don’t know well enough to know wether or not they have one. Or you know what, just don’t say it. At all. Now, don’t worry, I will give you examples to WHY these things are wrong to say. (Remember, the answers to “why” are all based on ME and MY health (or lack there of).)

– We all get tired, you’ll feel better in the fresh air!
– But you don’t look sick!
– Stop thinking about it and you will get better!
– You need more people around you, that way you’ll get distracted from how you feel!
– Getting well is easy, just stop eating gluten/dairy/sugar/salt/carbs/meat/other!
– If you really were sick, you wouldn’t be able to be so happy!
– You’re too young to be sick!
– You’re young, things will get better!
– You’re too young to know what it really means to be sick!
– At least it isn’t cancer!

I am on two kinds of medication. One to lower my pulse and one to help my body get through the day. I literally need medicin to be able to get out of bed in the morning. Just think about that for a minute.
Here is my second question for you; how long does it take you to get out of bed in the morning? Seconds? Minutes? On a good day, it takes me 1 hour and 10 minutes to get up. On a bad day? Maybe 4 or 5 hours.
Knowing this, that I need medicin to get me going, and it STILL takes me that long to get up, do you still think fresh air will make things better? Starting every morning with a fight to get up, do you really blame me for being tired? During an hour, my pulse can go from 50 to 200, down to 120, up to 210, down to 60, up again, and down… and up… Do you not think this will affect me?
How about knowing that on a good night, I only wake up 3 – 4 times, but on a bad night I can wake up twice/hour. I could make this list much longer, but I think it’s more than enough for you to understand that I do get tired and it’s nothing like being tired when you’re perfectly healthy. And sweet someone don’t you dare compare it to “oh I have kids, I know how you feel!” No. No you don’t! You can NOT compare having a kid or two, to having an illness. It just doesn’t work that way! Don’t be that person.

I don’t look sick… How should I look? To look sick, how would you want me to look? Sad? Crying? Bones at odd angles? Blood in the corner of my mouth? I’m not asking to mock anyone, I would very much like to know how I should look, to look sick. People everywhere say it “don’t look sick”, but what does it mean to “look sick”? Sad does not = sick. Crying does not = sick, and so on. Those are both feelings, not sickness.

If I stop thinking about my POTS, I will not get better. Actually, if I stop thinking about it, I will get worse. I need to think about it. Prepair. Think ahead. Plan, plan, and plan some more. That’s what I have to do to make sure I will feel as good as possible. If I don’t, if I just take everything as it comes, my body will crash, on all levels.

No, I really don’t need more people around me to feel better/forget how I am doing. There are times, quite a few times too, when the best thing for me is to be left alone to heal. To relax. To take it easy. To lower my stress levels. Having people around me at all times basically mean constant stress for my body. So no. No thank you.

Don’t eat this, don’t eat that, don’t do this, don’t do that. Believe me, I know my illness better than anyone, I know what to eat/drink and what not to. It’s as easy as that!

Sick people can be happy. I happen to be a happy and positive person. Not because I have an illness, but because it is my personality.

I have never understood why people say that someone is too young to be sick… How can someone be too young for it? What is it, that makes me too young?

I’m still young, I guess. That doesn’t mean it will get better. Some people tend not to understand “life long”. Those words can be added to pretty much any illness out there. Young does not mean that every illness will go away. Why would it?

How can I not know what sick “means” because of my age? I AM, in fact, sick. I have never understood what age has to do with health.

At least it isn’t cancer… No, I don’t have cancer, and I am happy about that. But not having cancer, doesn’t make me better. I am still ill. I still have POTS. It is still horrible. Does my illness not matter because there are people that have cancer? If you believe that, I kindly ask you to stop complaining when you get a cold, because at least you don’t have POTS (or cancer).

When responding to a person saying any of the above things, they usually answer with “oh, I didn’t know that”. Clearly they knew enough to say those things, no? No… Here is a lesson that can be used in every aspect of life – don’t talk about thing’s you know nothing about!

And please, feel free to complain about your cold, or your headache, or what ever it may be. You are free to feel bad even if the person next to you have an illness, any illness. Me having POTS doesn’t make a really nasty cold any easier on you.

that’s just so wrong

No photos… How did I manage to get ZERO photos from a total of 2 walks? That’s… that’s just so wrong… 😛

Earlier today I walked to Emporia to see if I could find a jacket. It took 50 minutes and it was so warm I couldn’t believe it! It did NOT seem that warm when leaving home.
Then I got home, I ate and then I got a all, “do you wanna go for a walk?”… Yeah.. ok.. So 70 minutes there 🙂

I’m not sure ho much water I’ve been drinking since I got home from my second walk, but it’s quite a bit. So warm… It was 19 degrees in the shade wen we left, and when I got home I saw that it was 31 degrees in the sun. So, yeah, water!

Since I doubled up on my new medicin I feel a bit better. My body is coping a bit better. But really feel what a long way I have before me for a “full” recovery. I’m hoping for a full recovery, but who knows.

Right now I’m too tired to think. I keep yawning. I’m hungry too, but my POTS won’t let me eat, so I’m gonna have to wait. It’s a super strange feeling to be really hungry but not be able to eat anything.

she couldn’t get enough :)

My POTS has been letting me know I’m alive these days… Since we turned back our clocks (dayligt saving) my body has not been well. I was already struggling with getting my body out of bed in the mornings. Now, it’s been close to impossible. Since the clock has been set back an hour, we basically get up an hour earlier. That is NOT something my body wants to accept. I have been forced to up my dosage on my medicin, Mestinon, and I’m hoping for the best. It helped, then the clocks… Let’s just say I have high hopes!

Forcing myself out of bed isn’t the only thing I do, I also force myself out on walks. I have to. And now that spring is REALLY here, it’s a bit nicer to go outside 🙂

Today, I was way too tired to go, but… I did it 🙂

Malmö Idrottsplats (Malmö IP) is whre FC Rosengård’s playing. They have some of the best female footballplayers in the world!

I had some chocolate today (it’s friday!) and I really shouldn’t have. I don’t at it much anymore, abd since I’v cut down on it, it affects my POTS even worse. I had to take an extra Procoralan because my pulse was way too high. That is NOT fun. And you know what, the less chocolate I eat, the worse I taste.
BUT! If I DO eat chocolate this is what I eat, milk chocolate from Marabou. A girl I once knew in the US asked me to send her some more after she had been visting Sweden, she couldn’t get enough 🙂

all in all, things are looking up

I’ve had a rough couple of days now. I’ve been too tired to do anything and to write anything.

A couple of days ago I went to Copenhagen Zoo to recharge. To just relax, walk around, take it easy, and just enjoy the day. It really did wonders for my mood, but sadly my POTS was not as happy. I’m extremely tired again and I sleep more than I did before. But this is all a work in progress, it will take time, thats just how it is.

But on theother side, I see changes for the better with my weight and around my waist and tummy. It’s all going down. That’s the first sign of the fact that my body is starting to heal! Last week I lost 0,3kg (just under 1lb) so that’s good 🙂

I’m starting physical therapy again this week, about time too!
I do physical therapy x 2.
First, I do cardio on orders/recomendations from my cardiologist.
Then, I do strenght training for my back, neck and shoulders. My left shoulder is in such bad shape right now that I can hardly move it at all!!

So I guess, all in all, things are looking up 🙂

I want nothing more than to eat or drink whatever

I am beyond tired today. I woke up at 6am and my neck, shoulderblades and head were all hurting so bad I could hardly see. Everthing was just a big blurr from pain.
I got an appointment with the chiropractor at 13.30 and he did some wonders, but I need to go back on Wednesday to take care of the rest. I’ve been crying all day from pain, and THAT is NOT something I usually do…

But nothing bad without anything good – I’ve been in such pain I have hardly notized my POTS. Don’t really know if I should laugh or cry about that one 🙂

I had some help making dinner today:

And I’ve had lots and lots of water too. But still too little – yo, the potsie lifestyle bruh! (I am seriously laughing like crazy over writing that.. too much TV… 🙂 )

Health today:
Every Monday, Wednesday and Thursday I go to the store for he office. I buy fruit, veggies, milk and things for our Friday breakfast. The line to paying is right next o the sweets/candy. Thank you? But I bought nothing today. Oh believe me I wanted to!! When I’m in this much pain I really, REALLY want something. Pepsi. But I’m not supposed to drink that since I ave sinustachycardia. The caffein in it isn’t that much, but it’s too muc for me. Every now and then, fine, but not all the time and not every week.
Me – “nah, I need to do this first, just 10 more minutes.” And then I was out of the store and on my way back to the office and tadaa, nothing unhealthy around to buy 🙂 That felt pretty good 🙂

When I do my “just 10 more minutes” I want nothing more than to eat or drink whatever. But I’ve learnt that I don’t remember that after those 10 minutes. I just go on to the next thing, and a few hours can easily go by Before I remember I wanted a treat. Thank you brain for tempting me with things I obviously don’t want!

It’s only 19.15 here, but I’m gonna go to bed now. I didn’t get much sleep last night and right now I really don’t feel too well. I’ve been in horrible pain since Saturday at noon, so no wonder.

(My spelling has been way off today, I’ve corrected so much now, but I’m just too tired, so if I’ve missed some, I really couldn’t care less right now!)

new week = new goals

So it’s the last post of the week, let’s make it a potsie post, ok?

This weekend, every year, SciFi World Sweden hold a convention 10 minutes from where I live. Last year, Amanda Tapping was here. Ths year it was Michael Shanks, Lance Henriksen and Kim Coats that I wanted to meet. But both years I had to stay home. I LOVE Stargate SG1, I LOVE the Alien and Predator Movies and I LOVE everything by Paul Anderson (Kim Coats was in Resident Evil). David Ramsey was supposed to be here too, but he had to go be John Diggle (I accept it..).

Both last year, and this year, I had to stay home. I mean, it’s a 10 minute walk and really not expensive to get in either!
But I have POTS and I’m not doing well. The venue where they have the Convention, Stadionmässan, has extremely bad airconditioning. It is super warm there and even my brother (who’s healthy) says it’s way too warm. If I go, I WILL faint! My health will get extremely poor and eventually I will hit the floor. It’s simply dangerous for me. If I had a wheelchair I could manage it in there for a while at least. Hopefully long enough to meet the people I want and to get autographs and/or photos. But I don’t have a wheelchair, so I have no choice but to give up what I want the most…
Last time I was there was 2 yeras ago and I can hardly remember it. I was in really, really bad shape. I just can’t do it. And it makes me sad. It’s no often a situation shows up where I really feel handicapped (apart from stairs, I don’t do stairs).

My brother got me this:

20170305-michael-shanks

Last year, it was Amanda Tapping 🙂 I still hope to be able to go again one day.

Anyway… new week = new goals.

Tomorrow it’s time to start physical therapy again. Cardio for my heart and then strength for my neck/shoulders/shoulderblades/back. I can’t tell you how nervous I am. I don’t know how my POTS will react. I don’t know how I will feel after. I simply don’t know what’s going to happen… So yeah nervous. And, I was supposed to go to slee at 20.00 but it’s now 20.44. I forgot to charge my phone and I kind of need it sine it’s my alarm clock too 🙂 So, hello, still up…

So, goals for the week to come:
– Start my physical therapy again (once this week).
– Go for 2 walks.
– Be very careful of what I eat.