HELPFUL HINTS FOR LIVING WITH THE SYMPTOMS OF MAST CELL DISORDERS SHARED BY PATIENTS LIVING WITH THESE DISORDERS – OVERALL STABILITY

OVERALL STABILITY:

I try to make the best of each day despite SM.

Take your cell phone with you everywhere.

I relax daily. I pet my kitty.I start each day fresh and try not to let the reactions and discomforts of the previous day spill over to the next morning.

I avoid all triggers. I always have meds with me.

I make my own cleaners, own beauty supplies like face wash, deodorant, lotion, etc. Here are some sources for recipes for them:

http://theindianspot.com/10-best-diy-beauty-products-using-aloe-vera/

http://theindianspot.com/10-amazing-2-ingredients-all-natural-homemade-face-masks/

http://www.tipsographic.com/make-homemade-bath-and-shower-products/

http://diyjoy.com/best-homemade-cleaners-recipes

When seeing doctors, I write down my symptoms, meds, questions, and other information and take it with me so if I get brain fog I can give the paper to my doctors. My specialist lets me email it to him (in advance of the visit). This way all my questions are answered.

I keep a journal and paper calendar with me to write down appointments and important things I need to remember. This way I just have one place to go each day to look and see what I need to do. I make a daily list of what I need to do that day, including shower, eat breakfast, make dinner, etc. I take my morning activities slow; first, I take my cromolyn sodium as I sit and watch TV , wait 30 minutes and take the rest of my meds, then have my coffee. During this time I review what I need to do for the day. After breakfast I get dressed, etc.

Be prepared always. Have meds & protocols on you at all times. When traveling get the name of a masto friendly doctor in that area just in case. Plan vacation within your/your child’s limitations.

Try biofeedback and meditation…even 5 minutes a day helps so much.

I have to remind myself daily that it is ok to just breathe. I do not have to be super mom on the really hard days!

I’ve learned that mornings are my best time so I work 7-1 pm four days a week. I take Wednesdays off to re-group. Many days I need an hour to nap after work. I don’t get as much done… but

I’ve learned that listening to my body is the only way I can get by. Prayer and meditation help immensely… <3

I have to avoid new electrical equipment like new TVs, coffee makers, etc. I think something must build up in the packaging. People never think of other items that may be causing their reactions in addition to foods, medicines, and chemicals.

It is important to listen to your body. When I have fatigue I rest as much as possible. Sometimes a two or three hour nap will be enough and other days I go to bed right after work. I used to just push through because that’s what an athlete does but all that did was land me in the ER or the hospital. My family and friends are very understanding and will let me rest if needed.

One thing that has helped me is removing chemicals in my life.

Think of each day as a new opportunity. Listen to your body and what your heart tells you. Meditate daily and do deep breathing often if anxious. Breathe in through the nose and longer exhale through the mouth. Wear a protective mask with a filter. Keep a diary of fluid intake daily. Only introduce new food, meds, etc. when you’re not reacting and stable for at least 48 hours. Avoid environmental toxins both in your own house and outside. Journal your reactions and avoid exposure to them. Know in your heart you’ll feel better. Be kind to yourself and keep your heart open to your feelings. Don’t let others’ ignorance interfere with your life.

One of the toughest for me was asking for help when I need it: if my bone pain is too bad, getting someone to walk the dog. If I can’t leave the house, calling out for groceries and not being shy with being very specific about my list. Occasionally asking for help with housework when it is overwhelming me

I adjust my day based around my symptoms. Today I had a meeting at church and was going to stop at the grocery store. However someone at church hugged me with lots of smelly perfume and bam, so I am suffering. I came straight home, took meds and am waiting for them to kick in. I will go to the grocery tonight or tomorrow. I accept this as normal, make no apologies, and will take a nap.

I spent time educating my friends, family and employer about my Mastocytosis. They now all respect what I go through and their support is unending and caring. It makes life so easy and wonderful. By sharing my challenge I was able to help an employee. Her daughter was diagnosed with MCAS and she knew to come to me first for help!!

I think of my body like a toddler. Lots of naps. Lots of rest. I avoid news and super tense media on bad days/weeks. I plan days out with my limitations in mind. I can’t do too much at once, or too many ‘bad’ things in a day, because my body will throw its own tantrum. 🙂

Take up hobbies, get out of the house, leave the doctor’s visit at the office, stop living in it, there is life outside chronic disease/disorders, LIVE IT!

If you trigger to off gassed chemicals, let all new products with plastic or paper air out in the garage for a week, or longer if necessary, before use.

I wear paper masks (which have to air out a week or more before use, too) when I go out (I react to off gassing from the more intense masks, too.). This doesn’t keep all smells out, but they trickle in slower so I have a chance to leave and keep the reaction less than it would be.

I wear a Vog mask whenever I leave the house. This has cut down on my reactions to perfumes and chemicals in public places.

Be aware of altitude changes and how they might affect mast cells. Ask someone else to drive if this could possibly be an issue.

The quality of my life has enormously improved. I cannot tell you enough. I have taken to photography – which I love. I am in nature and getting exercise. Have medical bag which I take everywhere. Plus have medical alert system. Life is good now. Lifestyle changes, for me, are key. And I embrace every day.

If I shop I go at times when there are very few people, so I can avoid the smells and germs that come with crowds.

I avoid extended periods in most buildings unless I know they are safe in terms of carpet smells, aerosolized perfumes, etc.

I pack snacks and a book or pillow/blanket if I have to wait for someone, because I usually can’t wait inside a building for very long, and in inclement weather I use the car.

Only buy older cars that have off-gassed more thoroughly.

Some of these things I only need to use on reactive days, some I do 24/7. I need to typically avoid: chemical triggers (huge numbers of manmade chemicals seem to be among my worst trigger), food triggers, substance triggers (certain fibers, oils, dyes, etc.), heat and cold triggers, sudden change in temperature triggers, stress triggers, scent triggers, lack of sleep triggers, low blood sugar triggers, sunlight triggers, pressure triggers (involves both tight clothing and altitude changes).

I make my own hair cleaner and teeth cleaner.

I wear big, bulky, used cotton clothing to avoid chemical, fiber, and pressure triggers.

I wear a hat almost year round, nearly 24/7, to void cold triggers for my head, and change in temperature triggers there (note – this eliminated my winter hay fever symptoms).

I interview farmers and ranchers to find food with the least chemicals (this helped SO much when my diet had dropped down to 5 foods. It improved my reactivity so much I can eat many foods in stores now, too).

I call companies to ask questions not only about ingredients, but about processing agents added to products, what other products the equipment lines are shared with, and what cleaners were used on the machines.

I wear a wide brimmed hat with a cloth underneath it that can be tucked back up into the hat to cover my whole face like a balaclava, plus long sleeved loose shirts and long pants in the summer. I get the sleeves, pantlegs, and cloth under the hat completely wet and then I can go outside sometimes even when very hot.

I have thin gloves I can use to get things from the freezer or fridge.

I sit on a stool to fold clothes, and prioritize what I need vs. want to do. I try to do at least one thing, no matter how small, so I can still have a sense of accomplishment at the end of the day.

Don’t let yourself sit and do nothing. Find something you can do even when you aren’t feeling well — even if it is something small. If you can stay busy, you will be less likely to become depressed about your situation.

We are only given one day at a time. Use it the best that you can.

When I can do nothing else I clean out a tiny drawer, or write a thank you note, anything to make the day productive.

Listen to your body, listen to your instincts. I was in a car accident three days ago, and it was yesterday at work that my body decided to start shocking, at work. I took my rescue meds, did an epi pen, and relaxed in an empty office. I am so glad that I did all of this the minute the alarm went off in the back of my mind. And yes, I can do this and not necessarily go to the ER. But I’m ready to go if I don’t start feeling better.(Note please that TMS always recommends dialing 911 and going to the ER after using your Epi-pen, unless you have been prescribed a different plan by your physician. Any episode of anaphylaxis can be biphasic, which means it can recur within 24 hours with no warning. You need to be supervised after anaphylaxis.)

And THIS ONE has taken me a lifetime to learn….listen to your body and don’t feel guilty when you find you need rest. You HAVE to do it or your body will crash.

Try to keep your environment as stress free and uplifting to your spirit as possible. For me, that’s NO Network television/news…too toxic! Only movies and shows I choose from Hallmark or Netflix, music and playing my piano, my art, my dogs, enjoying the beauty of Arizona sunshine, writing, prayer and meditation, quality time with my hubby and friends when I’m up to it, learning to say NO when I need to, enjoying the Symphony, Ballet, Theatre and KEEPING THE FAITH!!

Pay attention to the subtle clues. Even if you are busy, do not ignore signs of mast cell activation. Take your meds. Rest.

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