What a Trip Looks Like When You Are on the Spectrum and 'Allergic to Life'


Recently, my partner and I had to go to a doctor’s appointment. The doctor in question is a neurologist who specializes in adult autism and who is usually booked up three months in advance. We were actually very lucky to get the appointment at all — but there was a catch: The appointment was in a city that required three days’ travel from my comfortable safety nest/home in the mountains.

A trip all the way to the coast with no provided lodging, as this was technically an “outpatient” visit.

Those of you familiar with my writing already know this, but I am:

a) an adult with Asperger’s syndrome
b) someone who is literally “allergic to life” — I have mast cell activation disorder.

And I have to leave my home and safe space for three days?!

Once my partner finally managed to pry my fingers off the bed rail — and after putting on some violin music and making me a nice, hot cider to calm me down — we sat down to do some serious planning.

I’ll spare you all the logical arguments required to convince me this was a good idea, or the rewards I was offered (I got to see a real-life submarine. From the inside! And a steam train!) and will stick instead to the various practical aspects of this Tolkien-esque — in my view — epic journey.

How do you pack to deal with a hotel room, a strange city and a diet restricted to 15 organic foods? With a great deal of creativity and difficulty, actually.

First, we had to find a workable hotel. We actually wanted one without central heating and air — as the air in those buildings usually circulates through all the rooms, carrying perfume and cigarette smoke as well as the fumes of cleaning products. We also wanted a hotel where there was a balcony or openable window available to allow in a constant supply of fresh air. This often means seeking an older hotel that still reviews well online.

This is actually fairly easy to do — I’ve found some good search terms for this are “family-owned” or “developed property.”

First, we called the chosen hotel and paid for four days. That’s one more than we would be staying for. We then offered the desk clerk an extra $20 to air the room out completely for the whole first day, explaining we’d arrive on the second day.

We asked the management to make sure it really was non-smoking, to keep all the maids out of it, to not clean it after it was aired, and to, in general, keep it human-free until we arrived.

Then we explained about my medical needs and autism so the staff would not panic when a masked, gloved man came into the waiting area.
.
That, the bribe and a whole lot of explaining took care of the social aspects.

Next came the packing process.

A really important part of this process includes packing a small window fan and an air purifier to help remove residual scents from the room, or to help deal with accidentally introduced chemical elements, like the smell of cigars or cologne in the hallway.

After that, we get to the more personal packing.

Now everyone is different, but I thought it might be interesting if I shared our final packing list with you:

1. Three days’ worth of clothing, including protective items and awareness T-shirts.

2. My sleeping bag, as I’d almost certainly be allergic to the hotel beds (detergents, air fresheners, bleach, etc.).

3. An inflatable mattress — in case the sleeping bag was not enough protection, or the bed was too hard.

4. A pump for the mattress.

5. My stuffed kitty cat — my “safety totem.”

6. A triathlete’s transfer mat — because I cannot touch carpets and it’s hard to change clothes while standing on your own shoes. (A yoga mat works, too, but the transfer mat is smaller and easier to pack.)

7. A swimsuit. We were near the ocean and I love to swim.

8. An eyeglasses case.

9. Spare eyeglasses in a separate case.

10. Medication — hydrocortisone, six EpiPens (for worse case scenario usage).

11. My med alert bracelet.

12. A plastic bag for my swimsuit and towel — we use a zippered packing bag from an old comforter.

13. A hot plate — I can’t eat in any restaurant and food availability varies by city in this state. So we had to cook daily and get special permission to do so.

14. A frying pan.

15. Coconut oil.

16. Three days’ worth of food.

17. Two cases of distilled water — 64 bottles. I have to cook and wash with this as well as drink it.

18. All my medical paperwork.

19. Three days’ worth of reading material.

20. Q-tips, tweezers, nail clippers, my hairbrush, my special hypoallergenic toothbrush — my dopp kit.

21. A very complete first aid kit.

22. Swim shoes.

23. A laundry bag to keep dirty clothes from touching clean clothes and avoid cross-contamination.

24. Wallet.

25. Watch.

26. Cellphone.

27. Emergency contacts list.

28. Stress ball — small, goes in my pocket, I squeeze it when I feel a need to stim.

29. Surgical masks — 12.

30. Surgical gloves — 12 pairs.

And that was our latest list. We did end up needing three other items, which I will note here:

  • paper plates
  • a large, glass drink/soup mug
  • paper towels

But we were fortunately able to buy those at a shop near the hospital complex.

And I survived the trip. So this sort of thing, while difficult, is doable.

I hope that gives you an idea of what life can be like for people like me with invisible illnesses — and remember, I’m an adult. There can be other challenges for children and their hard-working caregivers.

Thanks for reading, and for caring!

Image via Thinkstock.

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