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Hej! Hello! Trying to cope with a life with chronic disease?

This blog will hopefully be a place where we with chronic diseases or someone who has a loved one with a chronic diseases can support each other. Help each other to find ways to cope with chronic disease and be able to manage all symptoms and put up a fight against what ever has taken over our lives.

 

 

Me

I love to create with my hands. Not pots or carving in wood (but I can build things out of would if I want to) but I love scrapbooking, painting (not so good at it), drawing (not so got at it), knitting and crochet and I love writing! My lettering is ok but needs a lot of practicing but my head is full of words. Planners are an important part of my life which and I will talk about in a, hopefully soon, post. These planners are right now the only “craft like” thing I can put energy in (I need to keep track of the family schedules, appointments and activities anyway so why not do it in a fun way). I am not a professional in any of my crafty areas, but I am “ok” at them. And now I’m also trying to get energy to finish my first yoga course to offer which I’m planning together with my beloved Sanna.  

 

I have got PPMS;

Primary Progressive Multiple Sclerosis. My body does not like my hobbies. It does not like that I work. It does not like me doing what needs to be done in the home. It does not have energy to be with my family.

This disease have made me, a very social person, isolated. Not because people  do not want to have me around, but because I am always so tired, I have pain, and when I have stood up or walked or sat down for a while I start to trip and fall.

I am from Sweden but I will write in English since I hope for input from all over the world!!! Hope you will follow me along this blog journey even if I have difficulties to post regularly. I have a schedule for how to handle all parts of having a blog, it is just the fact that my body and its level of energy has the last word…

 

Yoga, meditation and mindfulness for all ages

To bring some meaning to my life I’ve become an instructor in Medicin child and youth yoga. I am also working on getting yoga, meditation and mindfulness out there to those with some sort of physical impediments since their so simple but really helpful tools agains a poor working body or a not functioning mental being. That is why there will be  a huge lack of blogposts and not working links here and there in this webpage. I hope you will have an understanding to that.

These pages about yoga, mindfulness and meditation will be in Swedish but hopefully, in the future, I will also post in English. But right now my body is not functioning enough to start up my feature income. And yes, I have now lost my job due to my PPMS. Since I would not be able to have any ‘normal’ job I will try to have my own Yoga teaching ‘business’. I will at least be able to decide for myself when I can take a break or not. Right now me and my dearest Sanna (my personal yoga-guru) are planning a yoga course for me and my fellow wheelchair-users which takes up a huge part of my energy. But it’s slowly coming together and I hope that I will be able to put it up ‘for sale’ soon.

Welcome to this crazy persons website!

 

VIKTIG INFO

Alla tips som ges på denna webbsida är inte lämpligt för alla att göra! Var medveten om vilka grundsjukdomar, skador eller symtom du eventuellt har. Är du osäker på vad din kropp gör att du behöver tänka på fråga ALLTID din läkare eller sjuksköterska innan du provar att följa ev tips från mig.

Det är ALLTID din läkares/sjuksköterskas/sjukgymnasts råd du ska följa vad gäller träning, kost och medicinering du ska följa. Ev tips eller råd som jag ger är tänkta som komplement till råden du fått av dina läkare etc. 

Yoga är en ofarlig träningsform OM du lyssnar på din kropp. GÖR ALDRIG ÖVNINGAR/POSITIONER SOM GÖR ONT!!! Följer du detta ska yogan vara ofarlig.

Andningsövningar och meditation kan initialt ge mer ångest då du går in i dig själv. Med att ‘gå in i sig själv’ menas att du (oftast) sitter tyst och fokuserar på din andning. Då blir du utsatt för dina egna tankar vilket kan vara väldigt jobbigt då det kan vara de tankarna som ger dig ångest. Skulle du drabbas av ångest så kan du prova att försöka tänka endast på att du ska andas lugnt och stilla med magen. Fungerar det inte så sluta. Pröva igen en annan dag och gärna när du mentalt känner dig så stabil som möjligt. Att slå bort sina tankar, eller rättare sagt att notera vad du tänker på men då välja att inte fundera vidare på dessa utan fokusera på andningen är något du behöver träna på. Det tar lång tid att lära sig och även de mest erfarna munkarna kan ha svårare för att göra detta vissa dagar. Om du vet om att du har ångestproblematik kan det vara bra att prova meditation och andningsövningar när du har någon hos dig som kan stötta upp dig OM du skulle få en ångestattack.

Feel free to contact me!

Message

Home

Hej! Hello! Trying to cope with a life with chronic disease?

This blog will hopefully be a place where we with chronic diseases or someone who has a loved one with a chronic diseases can support each other. Help each other to find ways to cope with chronic disease and be able to manage all symptoms and put up a fight against what ever has taken over our lives.

 

 

Me

I love to create with my hands. Not pots or carving in wood (but I can build things out of would if I want to) but I love scrapbooking, painting (not so good at it), drawing (not so got at it), knitting and crochet and I love writing! My lettering is ok but needs a lot of practicing but my head is full of words. Planners are an important part of my life which and I will talk about in a, hopefully soon, post. These planners are right now the only “craft like” thing I can put energy in (I need to keep track of the family schedules, appointments and activities anyway so why not do it in a fun way). I am not a professional in any of my crafty areas, but I am “ok” at them. And now I’m also trying to get energy to finish my first yoga course to offer which I’m planning together with my beloved Sanna.  

 

I have got PPMS;

Primary Progressive Multiple Sclerosis. My body does not like my hobbies. It does not like that I work. It does not like me doing what needs to be done in the home. It does not have energy to be with my family.

This disease have made me, a very social person, isolated. Not because people  do not want to have me around, but because I am always so tired, I have pain, and when I have stood up or walked or sat down for a while I start to trip and fall.

I am from Sweden but I will write in English since I hope for input from all over the world!!! Hope you will follow me along this blog journey even if I have difficulties to post regularly. I have a schedule for how to handle all parts of having a blog, it is just the fact that my body and its level of energy has the last word…

 

Yoga, meditation and mindfulness for all ages

To bring some meaning to my life I’ve become an instructor in Medicin child and youth yoga. I am also working on getting yoga, meditation and mindfulness out there to those with some sort of physical impediments since their so simple but really helpful tools agains a poor working body or a not functioning mental being. That is why there will be  a huge lack of blogposts and not working links here and there in this webpage. I hope you will have an understanding to that.

These pages about yoga, mindfulness and meditation will be in Swedish but hopefully, in the future, I will also post in English. But right now my body is not functioning enough to start up my feature income. And yes, I have now lost my job due to my PPMS. Since I would not be able to have any ‘normal’ job I will try to have my own Yoga teaching ‘business’. I will at least be able to decide for myself when I can take a break or not. Right now me and my dearest Sanna (my personal yoga-guru) are planning a yoga course for me and my fellow wheelchair-users which takes up a huge part of my energy. But it’s slowly coming together and I hope that I will be able to put it up ‘for sale’ soon.

Welcome to this crazy persons website!

 

VIKTIG INFO

Alla tips som ges på denna webbsida är inte lämpligt för alla att göra! Var medveten om vilka grundsjukdomar, skador eller symtom du eventuellt har. Är du osäker på vad din kropp gör att du behöver tänka på fråga ALLTID din läkare eller sjuksköterska innan du provar att följa ev tips från mig.

Det är ALLTID din läkares/sjuksköterskas/sjukgymnasts råd du ska följa vad gäller träning, kost och medicinering du ska följa. Ev tips eller råd som jag ger är tänkta som komplement till råden du fått av dina läkare etc. 

Yoga är en ofarlig träningsform OM du lyssnar på din kropp. GÖR ALDRIG ÖVNINGAR/POSITIONER SOM GÖR ONT!!! Följer du detta ska yogan vara ofarlig.

Andningsövningar och meditation kan initialt ge mer ångest då du går in i dig själv. Med att ‘gå in i sig själv’ menas att du (oftast) sitter tyst och fokuserar på din andning. Då blir du utsatt för dina egna tankar vilket kan vara väldigt jobbigt då det kan vara de tankarna som ger dig ångest. Skulle du drabbas av ångest så kan du prova att försöka tänka endast på att du ska andas lugnt och stilla med magen. Fungerar det inte så sluta. Pröva igen en annan dag och gärna när du mentalt känner dig så stabil som möjligt. Att slå bort sina tankar, eller rättare sagt att notera vad du tänker på men då välja att inte fundera vidare på dessa utan fokusera på andningen är något du behöver träna på. Det tar lång tid att lära sig och även de mest erfarna munkarna kan ha svårare för att göra detta vissa dagar. Om du vet om att du har ångestproblematik kan det vara bra att prova meditation och andningsövningar när du har någon hos dig som kan stötta upp dig OM du skulle få en ångestattack.

Feel free to contact me!

Message

Blog

About

I am a mom of one girl and one boy, both teens. My husband, our kids and our dog live in a house in a southern Sweden. I am a nurse, specialized in onchology, working in a medical daycare ward, specialized in Haemathology. Due to my PPMS, one variation of MS I’m not able to work anymore (since 2020). What I do, when I try to let my mind relax are scrapbooking, knitting, crouchet, writing (kind of a non-consequent diary), reading or making other stuff with my hands.

Right now I have just registrated a business. My wish is to teach and practice with others yoga, meditation and mindfulness. I became an instructor in medical yoga and mindfulness for children and youths and much of that knowledge can be used for adults too. I am devouring literature that students who are studying to become instructors for grown ups yoga, meditation and mindfulness are reading. These are the reasons for my blog is rather quiet right now since I’m working on a course for those who are in a wheelchair and wants to learn and practice yoga.

Since my energylevels are LOW very little happens e.g. many projects running at the same time but really slow.

This blog is another project, which I will explain in the future. It is mainly about me trying to find how to manage my chronic disease and its symptoms and puzzling that with being a mom, wife, relative and nurse.

I ask you to think of that. My symtoms can be similar to yours, but it is not sertain that my ways of handling them are working for you. You might have PPMS like me but that does not mean that what is recommended for me is recommended for you. I this blog I will share MINE experiences and what the healthcare has recommended me. I will also say what I think, but remember; what I think is not what I think that you should think. My thoughts are my thoughts or maybe what someone else think in, for example, a study or a book. What I most want you to remember is; we are all individuals; we are unique and our bodys reacts in different ways. And, not to forget; follow your doctors or physiotherapists or nurses advises. You may use my words when talking to a doctor but like “hey. I read what a swede with PPMS said, and she said… What do you think of that”. If that, what ever it may be, then says that you would have no use of that advice/opinion/what ever; listen to that person. He/she/it probably knows YOUR body best.

I hope all with chronic disease may have some use of by blog, or at least; I can be someone to have a dialog with. I am a nurse of a reason; I have this strong longing of all people feeling ok despite illnesses, physical or mental. And I hope that some of mine strategies will help you or my words will make you think “I feel that” and I hope that we can have some form of dialog. And I hope you will join me on my travels in the yoga, meditation and mindfulness world since I know these subjects have helped me thru my disease!

No rude or mean comments are allowed! You may have an opinion but it is not allowed to express them in a way that may hurt another.

If you have read all the way down to here, THANK YOU!!! I hope to see you all in the future!

Find me on Instagram:copebycreate 

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