Oooh poor sparkles! I'm so sorry

I totally hear you. I find my family used to pride itself on not complaining and getting things done. I hate having to ask for help and living with such limits. Also I'm finding that many think I'm imposing these limits just to be controlling or because I'm scared. I wish people could understand that it just kills me to have to do this and I'm left with no choice.

Just thinking out loud in case it helps to feel less alone.

But your life really does hang in the balance, so please be careful as pride is not worth dying for

My blog is more of a rant but often discussing the hardships of relating with others with these symptoms. I don' t have a magic trick for it but here it is in case you're curious

http://mastcellactivation.blogspot.ca/

I tried showing the pamphlets from the mastocytosis society website (they will mail them to you for free as well as a card to carry in your wallet) to family as it gives a brief run down of things but I don't think it made much difference. It's still too bizarre an illness and not widely known.

I also have a huge stack of research articles that I show the scientifically inclined ones, and that does not seem to have helped either :S

Joanna, I am so sorry that you are going through this frustration. Boy do I understand. I think many of us on this forum are go getters and do'ers. This illness has forced me to reprioritize chores, tasks etc. NOT an easy thing to do. What I mean is I am daily trying to teach myself that if I have to leave that sink full of dirty dishes until tomorrow because I am not feeling well enough to tackle it, then so be it. No one is going to die because of it so it's not a priority. There was a day when I NEVER had a dirty dish sitting longer then perhaps a couple hours (someone else left it there for me to clean). My house was clean top to bottom every Saturday AND I still managed to work hard physical work outside on our acreage every weekend. Now there are dustbunnies on my floor, dirty dishes that may sit for a day and NO WAY am I going outside in the heat to work!!! Trust me I still have loads of retraining to do in this area. It's a work in progress.
What I see from your superwoman story here sounds JUST LIKE ME!!!! I protected my family from my illness for a LONG time. At least as long as I could. Plus I think I was in a bit of denial as well. I can no longer do this. I was diagnosed with MCAS a year ago. Now POTS is suspected and I will have testing at Vanderbilt next month. I also suspect Ehler's Danlos Syndrome due to my severe joint pain (quite debilitating) and my super duper flexability (greater at one time of course and now not so flexabile as I used to be...thanks to father time and age). The compilation of these have brought me to my knees and caused me to regroup and reprioritize my life. When I protected my family from how ill I felt, I now know this was probably not beneficial to me or them because the sicker I become (and the more I try to hide it) the less they know how sick I truly am and I get so frustrated because they don't understand. I am that personality that if I see it needs to be done I am UP and doing it!!! Not anymore! Some may be able to ask their familly to pitch in and help with stuff but I am not in that situation. Therefore I have to accept that when I see something that needs to be done and no one is doing it, if I'm not well enough to do it myself I have to let it go (not jump and tackle it) and not stay upset that 'somebody' needs to do it. Does this make sense? If it's something that would be considered my chore and I can't get it done then I work at making myself let it go until I know I can do it. I no longer expect anyone else to jump in and do it for me. If it is a chore that someone else normally would be responsible and they aren't doing it I will nicely inquire if they plan to do it and then I leave it alone. Either they do it or they don't but it's not worth me getting myself sick over by worrying or by physically jumping up to do it myself. So what I have learned from being ill is to reprioritize and be OK with letting things go. TRUELY not an easy retraining program to do. But I continue to work on it daily. I hope this helps you. I'm so glad that you came here to the forum to vent this out. We really do relate and I hope you find peace of mind over this.

Take care and have a great day!

I am learning SLOWLY. There do have to be changes in the way we handle things as a family. I think the older kids are starting to get it. We talked for quite a while about it today. Basicly we agreed that I'm gonna be the brains and them the brawn.
 I'm getting some hope about coping , because I need to look at the positive.
I handled my day , by thinking about what they could do WITHOUT me. Then I did what I needed to do. I got alot accomplished.

 I'll add here as a note , I've always been the artsy type, and when I got so reactive I had to leave paints alone. So now I engrave glass. Basicly I'm touching sand. So no reactions.

SO , I had pieces to finish for a charity auction , and I got them done on time. YAY! Then I got my laundry done. Then I took a nap.Then did computer work, and directed the teenagers to cook a wonderful dinner.
 So today was better. One day at a time is my new motto. I can't fix yesterday and tomorrow isn't here yet.

to Kim
what you said about protecting your family from it made sense. I have done that, and been in denial for a long time. It is time to change it.

to Kat
 You're right about me making them worry, I do. And we touched on just what you said when we talked today. If they know I SHOULDN'T then they know they SHOULD.

Now I'm not saying it's all going to change in a day, but I'm working on it, and no matter what mowing will be forever more off limits. Next is finding me time. It's just meaning the world to me to find people who do understand.

I actually disagree with that article. I would not say that anger is a SYMPTOM of the disease; it is a result of the disease. It is a very natural and logical feeling to have if you have been going through life completely normal and then - WHAM - your life halts because of a medical condition and you feel that you will never be the same. It is expected to feel that sense of loss and to be both sad and angry about it. After that, though, it's time to give yourself a kick in the pants, pull yourself (emotionally) together and make a plan of attack of how to get better.

Those of us who have mast cell disease will also feel annoyed at others complaining about their ailments which are not near as bad as ours, and we will get angry at our family if they are not helping us. Those feelings are not symptoms, though. That is just human nature.

Oh good, we get to have some FUN with this subject!! hahaha!!


I´m going to say I agree with BOTH VIEWPOINTS!!!


In some of us, yes, the mediators are exceedingly influencia and they would be indeed the CAUSE of alterations of emotions.  It has been proven that our serotonin levels can be extremely low or elevated and it´s also been proven that the high levels of histamines are a direct result of anxiety.  When we look at the neurotransmitter activity going on inside our brains, which is a brand new area of study called purinergics, then we have to wonder why we all aren´t locked up!!!  Prostaglandin D2 is a very POOR neurotransmittor and if you couple that with the inundation of extremely efficient neurotransmittors and low serotonins or high serotonins you have an absolute MESS going on throughout the entire nervous system!!   It´s like having Katrina totally overflowing your brain and body at one instant!!   Our bodies are not designed to be able to handle that intense flooding going on and this fully explains why for the vast majority of us we will feel that impending sense of doom when we go into full blown anaphylaxis!!!  It´s not a willing feeling, it´s a SYMPTOM!!!

That having been said, yes, we do feel helpless and angry and totally frustrated at what this does to our bodies and the constant horrible situations we face in having this disease so yes, again, this is a CONSEQUENCE!!!


Now, let me take this a bit further just for the sheer fun of it.    Let´s say you´ve got a personality disorder on top of a MC disorder, OH WHAT FUN WE HAVE THEN!!    This would mean that those people with an already natural tendancy towards anger or depression or even a bi-polar disorder, etc will have it MAGNIFIED when their disease is reacting!!!!   So, then we have to ask, to what point was this person made even more severely impared with their mental illness by the MC disorder?!!!!!   And was the MC disorder AT FAULT for sending this person over the emotional edge???!!!!!!!!    


Until psichiatrists and neurologists begin taking MC disorders SERIOUSLY and begin doing some REALLY SERIOUS STUDY in this area, it´s all up for grabs as to what is cause and what is effect and what is side effect!

A REALLY INTERESTING DISCUSSION!!!!!!!!!


Lisa