Tuesday, December 19, 2017

Don't Kick The Bucket: How I Plan With Mast Cell Disease

Life is busy. Most days, I feel as if I am running around like a chicken with its head cut off. There are college assignments to complete, Etsy orders to fill, doctors to see, house chores to do, and people to prioritize. Sick or healthy, the endless list of to-do's do not change. There is much to accomplish, yet so little energy to do it.

I push and push to get it all done, but it inevitably makes me sicker. Extra pain I can handle. Anaphylaxis induced by mast cell disease, however, is potentially deadly. It is a battle of the wills. And more often than not, my body wins.

The harsh reality is that chronic illness dictates which tasks will receive the fulfilling "check mark" and which ones will roll over to the next day, likely never completed.

Regardless of the diagnosis, chronic illness requires sacrifice. Mast cell disease presents a different facet though—the histamine or allergy bucket. Understanding that concept did wonders for my functionality in day-to-day living because it provides a basis in which to make said sacrifices.

Food, hormones, environment, medications, and stress serve as triggers for mast cell reactions. Each fill the hypothetical histamine/allergy bucket. The bucket is partially full with initial trigger exposure, leading to mild discomfort. There may be itching, bone pain, or slightly elevated pulse. When the bucket is overly full, it spills over to cause life threatening anaphylaxis symptoms—trouble breathing, worsening of systemic organ involvement. The reaction is usually not isolated to a single episode where symptoms return to baseline once treated. In many cases, the flare is long lasting. It entails weeks to months of suffering and emergency interventions.

So, how does the bucket theory have to do with a hectic schedule? 

On the typical to-do list, there are plans both big and small that will bring increased trigger exposure that exceeds the average threshold. Preparing in advance has been crucial to avoid an emergency situation. Every factor has to be taken into consideration to decide whether or not a task is doable and worth the consequences. 

For example, tomorrow I hope to drop off a few Christmas gifts at my home infusion pharmacy at the local hospital. While there, I know I will undoubtedly be exposed to additional triggers. There will be chemicals scents, such as perfumes on others, and maybe even chemical disinfectants. There is also the stress of meeting new people. 

Certain triggers are unavoidable. Since I am aware of the plan in advance, there are key questions I ask myself to lessen the "histamine" burden in my bucket. 

Should I make dietary changes?

Diet is imperative. Those with mast cell activation cannot tolerate the typical American diet. Processed cheeseburgers are not a friend, nor are packaged treats with preservatives. When there are plans that include increased trigger exposure, one has to be diligent in sticking to a safe diet. Diet varies by patient, but they share the common goal to make room for other triggers in the histamine bucket.
Low Histamine
For some patients, going low histamine a few days before is sufficient. 
Liquids Only / Elemental Formula  
The body releases histamine during the digestion process. A liquid diet relieves a large portion of that burden.   
Elemental formulas are so broken down that the body is less likely to recognize the ingredients as allergens. Some have formula as their sole source of nutrition, but others find it helpful using it in flares or preventatively. 
Water Only/Fasting
Although I am 100% J tube dependent, I still react to the formula, especially when my "bucket" is close to being full. I am practically a different person when going without food or feeds. While it is not ideal to go long periods of time without, fasting is my #1 preparation method for triggering plans. 
I disconnect from feeds a couple of hours early to ensure I am as least reactive as possible. In my experience, starting feeds again in the presence of public triggers is a guaranteed reaction. I tend to delay re-connecting for the duration, providing my weight is stable enough to allow it.
Of course, sacrificing nutrition is not ideal and should not be done frequently. However, with my disease state I find it is necessary in order to get out occasionally.
How can I conserve energy?

If I know I am going out, I have to conserve energy. Overexertion is a mast cell trigger. An outing will not be reaction free without a strategy. Other "to-do's" have to be altered.
If I tackle task A, will that effect event B? 
One task or event impacts the next. Redirecting to the hospital pharmacy example, the house must be vacuumed, the dishes washed, but I also am due for a shower. It is not practical to expend energy on chores if expecting extra triggers later when I go out to the hospital. So, the chores can wait until afterwards and I should shower the night before. 
Make Adaptations
Difficulty regulating blood pressure upon standing is a common Dysautonomia phenomenon. Maintaining vitals is a bodily stressor, which is a mast cell trigger. While I may be okay to walk short distances, using my wheelchair when out in public is how I decrease my histamine burden on the days with a lot planned. 
Are my medications/supplements therapeutic? 

In situations that are going to be overwhelming with triggers, it is beneficial to pre-treat potential symptoms by increasing medication doses with the agreement of a doctor.

Am I in a safe home environment? 

Home should be a safe haven. Coming back to a house full with triggering air fresheners, dust, or perfumes is the opposite of safe. Controlling every trigger in a house with multiple people is impossible, but at the very least, create a single safe room catered to any mast cell needs.

For me, this includes a room with no carpet, a large air purifier, and air vent covers. The covers are to prevent reactions to the heat and/or air conditioning. Before the outing, stay in the safe room to minimize trigger exposure. Afterwards, stay in the safe room to recover.

What other factors contribute to my histamine load? 

Aside from food, medications, and energy expenditures, there are further factors influencing reactivity and they should have an impact on the extent of the adaptations and accommodations to lessen the triggers that fill the histamine/allergy bucket.

  • Hormone cycles
  • Weather
Hot or cold, rain or shine, weather conditions cause mast cell disease symptoms. I am more reactive a day or two before stormy weather, as well as when the weather is hot and humid. 
Others tend not to be quite perplexed as to why we can do something one day, but not the next. The bucket theory is the perfect explanation. With the bucket theory, I do not have the same dread from an overwhelming to-do list. I do remain limited, but it is a relief to know that the planning and innovative thinking derived from the hypothetical bucket theory keeps me from literally kicking the bucket.