tisdag 25 mars 2014

..And so it starts!

Hi,
I am totally new to this whole thing.. how new you ask? Weeeell I got my diagnosis 4 days ago. Yeah, THAT new. Many of you who read this who have had it for many years will probably stop reading now and look for something else to read concerning MS ;-). What I do feel that I can offer with this blog is my zest for life. I intend to eat healthy (food that is good for people with MS) and exercise. Most of all however I intend to live life to the fullest everyday. 

As I am writing this I am laying down on the couch from my recent spinal tap. Yupp. Anyone who has had one will know that it's a rough one. My head is pounding so much it feels like its ready to explode. My diagnosis is so new that they are still in the process of ruling out any other neurological diseases. 

So Thursday the 14th of March 2014 I was standing in the kitchen making the kids some food when I noticed a very weird sensation on my back. Every time I moved my blouse did not feel as it should against my skin. It felt tingly and slightly less at the same time. Being busy I didn't have much time to think about it. Throughout the day I noticed the soles of my feet, while putting my hair in a ponytail I noticed the back of my head having that same odd loss of sensation. looking these symptoms up on google (as you do) I came to the conclusion that I must have some vitamin and mineral deficiency, more specifically B12 and Magnesium. So I asked my husband to pick me up some supplements on the way home from work.

Me and my husband an hour or so into 2014!
That night, after dinner I started feeling a cold coming on. Weakness, fever, achy joints and tiredness. This reassured me somehow. It was when the cold symptoms went away on Sunday the 17th of march and instead a very extreme dizziness and nausea took over. At one point during the day I decided that I was being lazy and thought it would be a GREAT idea to tackle some dishes. Weak as I was I made my way downstairs and started unloading the dishwasher. Halfway through ny nausea took over and it wasn't a pretty sight! So from then on I laid down and stayed that way. Slowly but surely it escalated from not being able to stand because of dizziness and nausea to not being able to SIT, then eventually by Tuesday the 19th of march, not being able to turn around in my bed without throwing up. 

Okay, so now you are probably wondering what the heck, why didn't she just call for an ambulance? For me calling an ambulance is a LAAAAST resort. On the Monday I did go to the doctor in our village, where they took bloods and thought that my symptoms were very odd. I managed to throw up on arrival from the strain of getting there and I probably looked a right mess. But I did get the impression they thought I was a bit cuckoo. I think they thought I was sick with the flu and the rest was just in my head.

So Tuesday evening the 19th of march my husband had had enough. He called the ambulance. Something was majorly wrong with me and it wasn't getting any better. While on the phone with them he was asked if an ambulance was really necessary as my symptoms sounded much like I had the flu. And even after reassuring him that I know what a flu feels like and that this was most definitely NOT it, he would only put me on a late priority and he wasn't happy about it.

My 30th birthday!
The ride into the hospital was torture. Every bump in the road, every turn, and every speed change made me more and more dizzy and nauseous. And to make a long story short... it wasn't pretty ;-). The next couple of days were a blur, as they often are in hospitals. I remember being taken to the ear and infections department because they initially suspected my dizziness to have something to do with my ears. After a lot of cleaning out my ears(gross) and a lot of testing if my ears they finally ruled out anything to do with their department. 

They then sent me for an MRI. Anyone who has been diagnosed with MS will probably have had one and will probably know what they found on mine. Lesions. A number of lesions in my brain. Four to be exact, of which one was active. I was still in the Ear and infections department at this point, and the person who told me the results was one of the doctors who had been dealing with me up until that point. He told me that he had only glanced at my results and didn't know if he was doing the right thing by telling me since he wasn't an expert in neurology, but he wanted me to be prepared for when a neurologist came down to tell me officially. It was in MY eyes one of the best things that could have happened. From the moment he told me and in the following hour until the neurologist came, I had time to process and think and had many questions ready for him when he came. I was also able to remember everything that we talked about MS, instead of being clouded by grief and chock. I had also spoken to my husband and crying with him, but also figuring out my plan of attack. My way of dealing with it all. Since then I have expected a wave of extreme grief. I have expected to cry myself to sleep, and for some reason that has not come. All I feel is motivation and dare I say excitement to figure this out. By this I mean my life and how to best live so that my MS does not and will not affect me negatively. I feel like I went through the stages of grief within moments and acceptance has stayed with me since then. Even after hours of research and Googling I still feel encouraged. Even after seeing and reading about all the many ways this awful disease has affected so many people. I am motivated and intend to share my life, research and progress with you here. I would also love your input and love to hear your experiences. 

I love working with kids!
So to summerize my initial episode, or my first noticed one, since my MRI showed I had had a number of previous episodes without knowing about it. My symptoms included loss of sensation on the soles of my feet, on my but, back, back of my head and ears. I also experienced muscle weakness, dizziness and nausea. For other common MS symptoms go to wikipedia here.

So here I am. Laying on the couch, dealing with my kids as best I can from a vertical position, and writing this.
Looking forward to my spinal fluid to normalize and to get the energy to start executing all my new plans for food and exercise. 


Thanks for reading,
Josefine

8 kommentarer:

  1. Vilken fin och givande text, Josefine. Well done!

    SvaraRadera
  2. Jag har missat detta helt. Följde Therese länk från fb hit. Jag blir förstås väldigt ledsen och sitter och gråter medan jag läser men jag vet att du inte vill ha mina tårar. Jag vet hur den känslan känns. Du vill leva som vanligt och vara dig själv. Du är verkligen en klippa och du kommer hitta bra vägar för att klara av det här. Vill du ha hjälp så säg till. Lite om kost kan jag ju men är ingen expert just på det här. Stor kram från mig!

    SvaraRadera
    Svar
    1. Tack så hemskt mycket Dorro! Det är så skönt att veta att man har så många runt omkring sig som vill en väl. Hade detta hänt för ett år sen hade inlägget sett väldigt anorlunda ut. Tror inte jag hade klarat av det alls. Så jag är så fylld med tacksamhet över Herrens timing. Ja du vet säkert hur det är. Livet har sina vändningar, men det är så otroligt hur annorlunda saker är då det faktiskt går att ha en positiv inställning. Tack för dina ord. Uppskattar verkligen all pepp! Stor kram tillbaka!!

      Radera
  3. Jo, even though I only just saw you a couple of weekends ago, and we talked about your experience and diet etc, reading this has moved me to tears. Your strength and resilience has been a total inspiration to me. You make me want to do better with my own health. Thank you so much for keeping this blog!

    SvaraRadera
    Svar
    1. I've been the one watching you persist through the years and continuously stick to your guns. I'm the one who is inspired by you :-D!!! It's like we talked about... I've just gotten something that is a little more evident right NOW. If I don't follow the plan I see the effects straight away. If I didn't I don't know how easy it would be to do this... But I am so happy to have been able to inspire you BACK :-)! Just passing it on! Thank you! <3

      Radera
  4. Åh Josefine... Jag hade ingen aning. Jag sitter på jobbet och kämpar mot tårarna, men precis som Dorotea skriver vet jag att det inte är tårar eller ömkan du behöver. Jag vill därför istället skriva att jag är SÅ imponerad av din inställning och din fighter spirit! Du är verkligen inspirerande för mig och alla andra som kommer att läsa dina ord. Jag tror verkligen på dig och din förmåga att ta dig an den här utmaningen. Tänk bara vad snabbt utvecklingen av mediciner för MS-drabbade har gått de senaste 10 åren! och tänk vad långt de kommer att ha kommit om ytterligare några år!
    Vilken välsignelse att du är just så stark och positiv som du är, att du har världens starkaste och bästa familj runt dig och bakom dig, och att du vet att det inte är läkare eller sjukdomar eller Google som bestämmer, utan en kärleksfull Himmelske Fader. Stor kram

    SvaraRadera
    Svar
    1. Åh tack Louise <3 <3 <3 !!! Ja medicinutvecklingen är otrolig! Tydligen så kommer det något nytt redan om något år eller så. Det är även något med denna diet/livsstil som jag nu lever som gör mig lugn i hur jag mår. Jag känner att jag verkligen gör allt jag kan, så får Vår Himmelske Fader göra resten. Och precis som du säger så är jag inte ensam heller, utan har så mycket kärlek runt om kring mig åt alla håll, mest av allt uppifrån :-)! Tack än en gång för dina fina ord!
      Kraaaam
      Josefine

      Radera