If I get to see you in the coming year, please understand that I will be singing songs of joy in my heart! Social isolation has been one of the most devastating effects of serious illness from these past 3 years. Should the Lord allow the circumstances for me to get out for an activity other than medical or a trip to the grocery store, I CELEBRATE!!!
So if I might ask for a few accommodations when we get together and you graciously oblige and I still get sick then blame any negative symptoms you may witness in me as the consequence of illness and not you! Very few folks live in a “clean room” like we have here at home. I did not clean at this level either until it was a matter of survival. Steve did not engage in my extreme mold/contaminant behavior strategies until two years ago. These strategies are necessary for this season of our lives together. Overall I do better when we follow certain guidelines resulting in less reactivity, the worst of which are fewer seizure-like and convulsive episodes which continue daily. We are implementing some “due diligence” from what we have learned to reduce my suffering with the goal of eliminating this illness altogether. We believe that the Lord has allowed these trials for mysterious reasons and ultimately His glory. He is good!
Both Steve and I recognize that there are definite signs that I am getting better. We have trained our eye to search for even tiny changes in the pattern and intensity of episodes, pain, and reactivity to keep us hopeful that one day I will be well. It is happening! So please don’t be discouraged when either one of us might mention that I had a rough night or you witness a significant setback. Recovery is a long, jagged line of progress, setbacks, and lateral “bunny trails.” The overall trending is positive!
The most important accommodations that would be helpful if we get together are as follows.
Meeting in a public place: Select a place with less noise and less loud music. Newer buildings are generally better than older ones; please no historic buildings or ones with known basements or crawlspaces and history of flooding. Restaurants that make their own food with fresh ingredients are better able to modify dishes to meet my food sensitivities. This rules out most fast food places! Letting me know the name and phone number of the establishment ahead of time will allow me to contact them with my needs and make the experience of ordering food more pleasant for both of us! Please do not wear cologne or perfume that day. I will need to greet you and depart with a “virtual hug” to avoid exposures to hidden elements that might be on your clothing or coat. Forgive me if I sometimes forget this step in the joy of the moment when I see you!
Meeting in your home: This is still a situation that I avoid since there are too many variables at this time that may cause serious problems. I cannot come over if you have 1) ever had flooding in your home of any kind from a leaky toilet to a wet basement or 2) have older carpeting. If you are willing to have me then please remove all fragranced products at least the day before we are scheduled to be together (such as plug-in or spray air fresheners, candles whether lit or not, potpourri, etc.) Keeping windows cracked open in cooler weather or open in warmer weather to allow fresh air inside always helps (unless someone is burning something nearby outside!) I prefer to visit in the area of your home without carpeting and sit on non-upholstered furniture. Wood, plastics, and leather are best.
Staying overnight: If we are invited to stay overnight then we will either bring our own linens, blankets and towels, or ask that you wash and dry everything in fragrance-free detergent and softeners (including dryer sheets). Please replace a moldy shower curtain liner with a new one! I will bring most of my own food and hand soap where possible. Providing non-cured, non-smoked meat cooked only with salt, plain oatmeal, plain salad-type vegetables or zucchini/cauliflower without seasonings will be a HUGE treat! I will always bring the extra condiments and food that I can tolerate.
Yeah, I know that this is a lot for a busy household to prepare! Thank you for helping us out with this stuff. Steve and I are exceedingly grateful to have recently obtained a travel trailer which has helped manage all of this tremendously well. (It is a lot of work for us too, I tell ya!) Both of our families and many close friends now live out of State so travel is necessary to see them. This single change in our mode of travel has allowed me to leave our home overnight much more safely and go places from which I have been cut off for most of the past three years. We are humbled and blessed! I really like having a mobile safe house that has already opened up my world, provided privacy during setbacks on the road, and aided sleep with a really comfortable bed that can be hard to find when away from one’s own humble abode at home. Thank you Jesus!
We are hoping that the ongoing extreme avoidance and dietary strategies are temporary; some level of precaution albeit more relaxed than the current level will likely continue for some time. How long will we need to do all of this? We simply do not know. We believe the Chronic Inflammatory Response Syndrome (or Multiple Chemical Sensitivity) is due to mercury toxicity and we finally have the correct treatment protocols to get me well. I have excellent medical guidance and a proven treatment plan to follow. We are hopeful that I will be in better health within this year! I AM GOING TO GET WELL!!!
And that Gentle Reader, is much to celebrate! JJ