My husband says to me you are always tired 😡 He also tries to compare his tinnitus to my blood cancer 😡 I told him that I would trade with him in a heartbeat! I said you also have ADHD and compulsive disorder so go take a walk like Forest Gump bye 😂 I work 5 days a week and clean your clothes and this house! I am tired and have many ailments but I refuse to take crap from anyone!

On a fatigue video on this site they mentioned this. People tend to tune out the word fatigue. The video says that you know when you have the flu or a cold and are just lying in bed or on the couch, feeling so bad you can’t do anything? That is a good description of fatigue (and how I experience it). I have used this description and it helps in people’s understanding…I’ll try to find the link for you. Worth the 4-minute watch.

Here it is: weakness and MPNs—causes and management.

https://www.mympnteam.com/resources/weakness-an...

Weakness and MPNs: Causes and Management | myMPNteam

https://www.mympnteam.com/resources/weakness-and-mpns-causes-and-management

Thanks. I’ll keep it for when we have this discussion again. 😞

Solidarity 🌷

People around us can be selfish and sometimes ableist and disbelieve our suffering. Sometimes, young(er) people might have a hard time accepting illness in others, especially chronic illness, and especially invisible chronic illness such as MPNs.
But they need to learn compassion. No one is eternal, no one has teflon health, illness and disability will be part of everyone's life, particularly as people grow older.

It takes a lot of effort to just survive the day when MPN symptoms are bad, and it is even worse when we do not get understanding and support from those around us.

It might help if you have a MPN specialist who believes you and is an ally, they can talk to your daughter and explain to her how debilitating MPN fatigue can be, even in people considered low risk. Or a nurse who follows up your health.

Your daughter is protesting your illness because she still wants all that you provided for her in health. But that does not mean you need to sacrifice your health and well-being so that she doesn't need to adapt. She might need to grieve the person you used to be. That is normal and will help with your relationship with her. She most likely is old enough to learn some compassion and to accept the new you.
There is counselling for families in which a member has a debilitating chronic illness, for the family to accept this life change, to process it, to adapt and show support and compassion. If you can afford it, it might be helpful. You can have this counselling remotely, so that you avoid getting exhausted by travel.

In the meantime, know that you have a community here, that you are understood here and that you can find emotional support here whenever you need it.

Many hugs,
Tatiana