Masto tips by My lovely friend and me. These tips that have helped us to stay safe. Living with mast cell disease for me is like being allergic to the world. At any given time, from any given thing I can experience anaphylaxis. I find that explaining it to people as, “I’m not technically allergic to everything, but because the diseases my body thinks I am allergic to everything. Thus resulting in anaphylaxis.”
1. Masto/MCAS tip. If you are scent sensitive.
Masks need to be replaced every 4-6 months. If you use an RZ mask the filter needs to be replaced every month. Carry a back up mask, store your mask in ziplock bags to keep the filters fresh. Use one mask for 2 hours then switch your masks. If someone is to spray any scented products around your mask this will compromise your mask.
2. More for scents. Fellow mastos have you ever thought of activated carbon? Like the stuff you use for a fish tank!? Again a big thanks to my friend for pointing out that putting things that have absorbed smell into activated carbon can help take the smell out of it.
3. Air purifiers. Using air purifiers has saved my lungs. Air purifiers can help to reduce the amount of smells we breathe in especially in a apartment. Suggested air purifiers http://www.usairpurifiers.com/air-purifiers-use-chemical-voc.html
4. Reduce stress. Do something you truly love or something that is going to help you. When we are sick many times we forget these things. Even if you start out with something simple this can make a huge difference. Painting, or writing are two things I enjoy. I will also go for a walk (if I am able to).
5. Avoid spicy foods. Spicy foods are Known to increase and make mast cells more angry. This doesn’t just mean not eating them. It means not being in a public place that cooks foods like this, and also avoid things like curry, as it is extremely high in histamine.
6. Be gentle with yourself. When you have brain fog remember this happens to all of us Mastos. You aren’t alone. Many of us get forgetful and confused, try your best to not get angry with yourself, you are doing the best you can in that moment. You are worthy of love and respect from others, but most importantly yourself.
7. Go scent free. Unscented soaps, dish soaps, body products, natural tooth paste/unflavoured no Floride, no dyes , I truly at first did not think that the smells of body products affected me but they truly do, they make me anxious. Throw out the smelly products because they can increase risk of reactions, sometimes this means getting rid of clothes, blankets, furniture, because smells can get caught in materials. I would for sure recommending not to smoke, smoking is terrible for ones health all ready and if you have MCAS this will only increase your risks of bad reactions or anaphylaxis.
8. Try the elimination diet (if this has been recommended by your doctor). Sometimes the yummy foods we are eating can be causing the problem. I have personally cut a large majority of things out of my diet to help me feel a little better. It isn’t a cure, but it does help. I also take cromyln before I eat and this can sometimes make a difference in how you feel after you eat should you have gastrointestinal involvement.
Remember you have great value you and your life matter. When we do our best to educate others about our illnesses, we can help change the worlds perception about rare diseases. You can do this. Remember you are a fighter, you aren’t alone in this, not now not ever.