Share my experience after few months with MPN

[Inverter]

Hey everyone, after I discovered in the past few months Jak 2 positive and then The trouble of 2 BMB in the same morning and then some symptoms was getting better but some was getting worst, my life was totally turned over, I was really feeling I was going to die any time soon, and living alone while my partner and my family in other side of world, was making everything more scary, especially in the night when symptoms was getting worst when laid in the bed for hours. Several night I was waking up at 2-3 am with kind of tremors, heavy numbness , I was feeling like I would die and the only I could do was texting my partner, the worry was enhanced even because in few times I had need hospital or ambulance and I realise if don’t have someone at home the risk of very high because hospital are full and ambulance not available even for 2 hours waiting.

I wanna share my experience what could maybe helpful for someone else .

In my case doing right things to try to eat healthy was actually what was making everything worse and scary.

Basically I didn’t have Diabet and for only First time in life I had cholesterol little higher, basically the symptoms of bad numbness was just arrived in coincidence with the cholesterol increase.

Then the first step I actuate was eating healthy, avoiding fat, processed food , basically some vegetables, lot of fruit , fish, chicken and pasta or rice.

My numbness was getting less and also disappeared for most of time , was like wow, I’m going in the right direction.

But then Some other symptoms arrived and was even worst of the improvements.

Basically I was feeling like fainting, passing out too often , feeling vertigine, light head, nausea , I was really scared , because was become hard everything, was a general feeling of sickness for most part of day for several days , without improving but actually getting worst, I was feel something was destroying me from inside , take all my e energy .

At that stage I realise I couldn’t live anymore alone and also not sure how long i could have left to live . Then I managed to going living to my partner overseas and managing to keep stay under medical check, unfortunately at very high cost going everything private.

Even with her help and support symptoms was always there, feeling like no balance too often and risk of passing out any time.

Then one day around us was a original Italian Ice cream vendor and there I literally thinked , what the hell , doing right things I’m still going bad , let’s enjoys this ice cream … if I’m dying I’m gonna died anyway no matter what.

Since that ice cream everything changed, I started feel better after a while and the next day , and then feel bad again the next few days and then I just realise eating too healthy probably was giving me a lack of energy.

I started add few sweet things in my day , and don’t care anymore to eat perfectly healthy but add some energy things in my fault intake.

Since that time, was a continuous improvement, the feeling of fainting and syncope was disappearing, was able again to exercise not only on cycling but also running and lift weight and my life slowly slowly is getting better.

I still have panick attack in the night because sometimes symptoms are scary when stay in the bed for hours , but during the day life I’m slowly slow getting better.

I still have some worry to fix , still can’t understand why of some symptoms and if could be something more to discovery what could be the cause , still need do some more test, but atleast I feel I’m getting some hope .

And I wanna share with everyone to don’t forget to add energy food in the diet , because avoiding fat and sweet things can lead to a much worst weakness

[Hopetohelp]

Thanks for sharing. I believe it’s important to enjoy life. A little of what you fancy and all that goes a long way

[hunter5582]

Glad to hear that you are feeling better. It sounds like you have had a mix of MPN symptoms and anxiety to contend with. It is worth knowing that the inflammation we experience can increase anxiety and the anxiety can increase inflammation and MPN symptoms. It can be a viscous cycle. This is a cycle that needs to be interrupted. It sounds like you fund something that helps. We need to find ways to have fun each and every day. This includes the food we eat.

It is important to eat healthy but that does not mean we can't have some fun with the food we eat. Ice cream falls into one of the under-mentioned essential food groups. Known as the 3-Cs (Cookies-Cakes-Candies). Consumed in small quantities, the 3-Cs enrich and enhance our lives and health. 😋 Do note that Dark Chocolate is loaded with anti-oxidants.

All the best my friend.