Spoon Theory!

An amazing lady pah_nachbarn, just wrote the following:

Unsere #putzfee ist gestern unerwartet nicht gekommen und mir wurde abends wieder bewusst wie sehr wir auf sie angewiesen sind. Es fehlt oftmals die Zeit um alles gründlich selbst zu reinigen aber vor allem bei mir die Kraft. Kennt ihr die Löffeltheorie? Die Löffeltheorie ist eine Metapher dafür, was man als chronisch kranker Mensch an einem Tag leisten kann. Angenommen man hat pro Tag 10 Löffel (=Kraft, Energie um Dinge zu tun). Dann geht beispielsweise 1 Löffel drauf für aufstehen, duschen, anziehen und Frühstück vorbereiten. 2 Löffel werden für den Gang von daheim ins Büro/zum Arzt/etc benötigt. Und so weiter. Ihr seht wo das hinführt? Irgendwann sind die 10 Löffel aufgebraucht. Schlecht ist, wenn das schon zur Mittagszeit ist. Ein gesunder Mensch hat unbegrenzt bzw viel mehr Löffel pro Tag zur Verfügung. Ein chronisch kranker Mensch je nach Krankheit und Schweregrad ein paar oder viel weniger Löffel als ein gesunder. Ein Kranker muss immer wissen wie viele Löffel er hat und sich entscheiden wofür er sie verwendet. Ich habe mich dagegen entschieden sie fürs Putzen zu verwenden. Meine Löffel gehen im wesentlichen für Kind, Mann, gemeinsame Familienaktivitäten, die Arbeit, unsere Katzen und Sport drauf. Und obwohl ich bemüht bin mir meine Löffel einzuteilen wache ich manchmal morgens auf und fühle mich als hätte mir an dem Morgen keiner auch nur einen Löffel für den Tag gegeben 😂

Danke Dir – für Deine positiven Posts, Gedanken!

Life is a challenge

It is not that easy as it was, might be life is never easy and full of challenges but also chances!
I had that amazing feeling two weeks ago, when I was up a hill with my backpack and my Inogen G One3 – can’t´believe!!! I went skiing, i never was even hoping I could do it again, but then we did it. With the amazing support of my husband, I can do all…we started with a small lift, 1.200m high…in Ellmau and a week later I was on top of the mountain in Leogang – in 1933m height. It costs a lot of energy, it is tiering, but I was happy! The feeling of doing something unexpected made my growing!  Every day is a challenge, not only for the once with CTEPH!

But I am privileged and I know it, as I have the surrounding of my family, my husband and my child – all challenging me every day, like it happens to a „normal“ mum and wife – but! they also give me hope and happiness!

good days!!!

Yeah, it is always the same after rain there will be sunshine, and after sun, rainy days will follow. I am still in heaven as today it is a lucky day. I went up the stairs without oxygen, slowly and breathing through the nose, did some cloth arrangements in my son´s room and went downstairs with a heavy box. I didn’t felt that much „stress“ or had the feeling I can’t breath and by checking my values it was confirmed! 92% oxygen and 82 heart rate, after sitting two minutes 98% and 75 heart rate – chaka! So what I am learning at the moment, is breathing via my nose, in AND out and doing everything a little slower and with patience. Despacito y lento are my words for 2018! Today I can say it with a smile and of course I want to keep this happy feeling as I know there are days, I don´t feel well. Even as today i feel a bit dizzy and evil. I didn’t´t had this the last weeks. I am trying to find out, why it happens sometimes, as tonight I slept well and 8 hours. I took my pill (Adempas) very early this morning around 8.45am – usually I do an hour later. And I was drinking a strong green fresh tea…might be the combination of my green tea and the medicine don´t fit together…? And I had breakfast very early around 9.30am with muesli, yoghurt and fruits…

Also I received some good news we have to proof, that vueling offers oxygen  on board for free (!?!) which means I could fly from Ibiza to Frankfurt via Barcelona and then home direct (as direct flights starting around 25th march due to easter holidays). All research costs a lot of time and always depends on the people you are talking with or emailing with but I have to say that so far my experiences are very good and I receive a lot of help and support from strangers. Of course, we could say it is their job, but they really try to help. That´s why I also did a check off on my to do list finally, as I sent a healthy Tea box to a woman called  Mrs. Waelde, as she was an amazing help through all my complications to get my prescriptions for Adempas and was supporting us during the adaption while I was travelling between Munich, Bad Nauheim, Ulm and Ibiza. Also a little present for the lovely lady from Vitalaire as she always did me a favour regarding my oxygen machines. I have a few more on my list I am grateful for, so not finished yet with saying „thank you“.

my second BPA

on monday the 5th february after a sleepless night I was looking forward to the second intervention. Even I was too tired and not feeling „happy“ I was calm, I was „fine“ with me. I had no pain when they placed my catheter, 2nd step went well…then the clock was running and it was already 10.45am – I was asking if all is good…? At 11.15am they were surprised I am still in my room, in the meanwhile I did some breathing exercises, which went better than the last days. I really was totally calm…Then at 11.50am I was nervous, as I took my „caughing pill“ already as commanded at 9.15am – same moment the „driver“ of my bed came and brought me downstairs. Same place like last time I was waiting in front of the same Cardiac catheter room.  Good sign, I was keeping the love heart from my son and his pictures with me. Then Anja, the amazing nurse from last time, when I had to caugh blood passed by, stopped and smiled. Now I even felt more relaxt, as I felt save, even if I knew she will not be all the time with me, I gave me a good feeling. Another nurse, super sympathic, did an amazing job by setting my catheter left side. No pain, I even didn´t noticed that she was pulling it in! Third milestone on they way to the operation table went well! And this time I had my stick with my music Deva Prenal „Love is Space“.

It was good to see well known faces, as the „main“ nurse was today as well with us (Anja had to leave after preparation) and they were talking with me, like we would have a coffee, about Meditation, the stressful life of being a mum, wife and working woman…I was prepared, lying on a heated small bed, palms upwards, my feet falling left and right side, I tried to lay down as comfortable as possible. My music was on and then at 12.15 the doctors came in and started. The only real pain I felt, was the cut in the groin to get in with all instruments. I received a light drug 1:1 – I was remembering from the first one! And all started…I trusted again and I felt very safe and „home“. It took a long time this time, as they were very enthusiastic but also very zurückhaltend this time. Prof. Dr. Ghofrani were also watching, when they were operating in the first segment number 9 today and it turned  out very difficult as all Gewebe war verklebt. They had to do it slowly, starting with a ballon size 1 going up to 3 to make sure, they will not break any vessel today.

 

 

a hopeless day…

I was just freaking out on saturday morning, I was crying the whole way to the clinic…silent and loud, I didn’t wan´t to leave my son again, I couldn’t´t imagine I will do the intervention again, even I have beeing so brave the weeks before. I was just afraid. It came when I was packing all together and I noticed the distance between my son and me as he also was preparing himself for a few days without mum and he prefers to create space between us, not really mental, it is more physically. He don´t want to hug, that I talk to him, he is going on distance and this hurts! Of course I know him in best hands with my parents, but it is hard to leave him after all what happened in august and especially October and November. He is a sensitive character as I am but he is it really, 100%! So on our way to the clinic I gave up in hoping, praying and believing, especially after our car broke down last eve, we managed it to reach the house of my parents after our ski holiday and then my husband had to react and organising all to make sure, we have a car next day and our car will be towed away. But worth thing: he got another attack of Toxoplasmosis in his eye so he went „immediately“ to emergency. I am sure he was noticing it since a week but didn’t want to take action during our amazing time in the snow in Austria together. They have been super unfriendly to him, why he is coming on a friday evening and told him to look for his regular doctor. Are they kidding? He is in Barcelona and not an emergency doctor! So in the end we were driving to Bad Nauheim and arrived at 3.30pm. I was shaking, it is always the same, if I walk along this street. First I thought because only of the cold, but now I know it is my impression to show that I am afraid…The hours in the car, I felt lonely, left alone, I couldn’t except that all is like it turns out, as well as Daniel´s Dad had to check his „prostata“ as his sum was higher even as he was operated 5 years ago. So I felt into an empty space, it was not dark, but hopeless! I had the very first time the feeling I give up…I had no Power for a few hours and also next day I wasn’t that good. I didn’t want to talk or think about my next BPA…I was worrying, as I had the feeling, that after all these negative successions my forecast for the BPA was not good. But then it became better…The  blood collection went super well – first step. Sunday we only were waiting for monday and they told us, monday at 10.15am we start. Juppie!