I don't want to die

I'm writing this because it feels too painful to talk to my family members about it. Painful for them.

I have MCAS and I feel like I've just started another flare of anaphylactic reactions. I had a reaction last night, none today, but I have so many symptoms that are mast cell related. I don't feel like I'm in the clear.

In my last flare I had 20 or 30 episodes in a 3 month period. I really thought I was going to die.

Now I don't know how to face it again. I'm trying to ignore it, but I'm scared. I'm on ketotifen, prednisone, and antihistamines, but my skin is still so itchy I want to rip it off my body.

I don't want to die. I'm 26. I have a husband that's well and loves me. I have 2 beautiful pet rats. I have my adoptive family in America.I am loved and I love many. On my good days, I can feel my potential to recover. Sometimes I even let myself think about what it would be like to have a job and maybe even children. I just want a simple life.

I just want to live.

I used to see a future for myself, but now I can't see it anymore. I see darkness. I have had to make my peace with my mortality, with my illness, before. But I am so scared now. I don't know if I can survive what happened last year again.

In some ways it's funny to think that I was suicidal pre-illness and now that I'm sick, I want to live so badly. I just want to be with my husband and bake and go to the beach and listen to good music.

Comments

HI @Nightingale- thank you for writing so honestly about such painful feelings. As a life long chronic eczema sufferer, I can really relate to that sore, sore skin that you want to rip off....and I have to say when it is bad I feel frantic and anxious. You have been through so much with MCAS, and it is not at all surprising that those episodes have left you hardly daring to hope for better days. The thing that really strikes me is that you say ' I see darkness' for your future, but your writing is full of light- love of people, rats and cake! One day at a time, and go gently. xxx
 
Sorry to hear how awful it is, hang in there! You are a trooper. If you were suicidal pre-illness and now you are not, that is a very important type of life-progress. Good things can still happen to you in the depths of yourself while the illness churns away on the surface.
 
Hi @Nightingale, I hope you are feeling better since you wrote your heart felt blog. You have a future right in your home with that loving husband you mention. He will love you through the hard days and the good. Hug your rats too. They are very smart I hear so they'll know you need a snuggle. I do hope you're doing better. One day at a time right? You probably hear that too much don't you.

I wonder if Aveeno baths would sooth your terribly itchy skin. Maybe @hellytheelephant knows. Aveeno is just really an oatmeal bath. Worked well for my shingles and a friends eczema. Of course I just wish I could be helpful to you.

Big Hugs @Nightingale.
Pen
 
I hope you have moved past the crisis.. I had a grandson born with baby eczema. He was miserable. Special creams and soaps. He grew out of it. I can only imagine how it feels for many who have it.
Inresearvhed on behalf of my daughter for her baby. I often read it was but related and that a good yogurt should help. At one time I bought goats milk yogurt and loved it. Just trying to get away from that cows milk thing.
Keep on keeping on.
 

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