Can Arachwarriors still enjoy travelling and going to Events?

The quick answer is YES!

But there are some important caveats to keep in mind.

I am able to do some fun things too, like camping, travelling within reason, and we even got me into the lake using a revamped recline wheelchair which we added floaters to.

But here are caveats:

1) everything takes a lot of planning. Friends must go and scout out our target locations well before we go, to get see the reality of the obstacles we will need a plan for Don't just see a place tagged as "accessible" and think it will be okay. One able bodied person's idea of "accessible" and ours can be entirely different things.

2) everything needs a lot of pacing and flexibility for dates, especially when traveling.

3) Where you need to involve public transportation, including flights, call the service desk before booking and grill them. Ask them about seating, storage of equipment, whether there are internal services to help them plan for your special needs much before you go.

4) know your usual triggers, know your pacing requirements, and then add in extra "laying low" days in between ***see last point about how far into your journey of self knowledge before you even try. This can take up to the first 3 years after diagnosis.

5) ensure you have an extra week or two of meds with you and enough money to stay up to 3 or 4 days extra in case all the fun leads to a mini flare. Travel with everything in its original Rx bottles, in case you need more. Local clinics/hospitals will be much more willing to give you an emergency supply if you have your current Rx bottles, even if empty.

6) expect family and friends to go out without you for an entire day in between activities. Pick the activities you most want to participate in, and leave the rest for family while you recuperate. Review pictures and hear them retell their stories when they get back.

7) be brutally honest with yourself and your travelling companions. If you are beginning to feel drained, listen to your body, go home and rest while they continue on. If you try to push yourself, everything can start to go badly.

8) If you are traveling in a car, make sure you have your meds close to you , not all packed away. Take frequent breaks and stay within your limits. I never travel more than 5 hours in a car at any time, and never more than 2 days in a row without at least one day planned somewhere where I can lie down quietly and recoup. The cars vibration, noise and general traffic stress can pile up quickly without notice until it's too late.

9) don't share your car or room with children, if that's available. Grandparents, take your own car, get your own hotel room, despite the savings when sharing a room with younger family members. The stress of children's noise and activities are another stress directly on your autonomic nervous system, putting you into a low level fight or flight, sympathetic nervous system tone even if you don't feel it right away. Make sure you have enough quite space to recoup in peace, via your parasympathetic system. You need twice as much recoup/quiet time on the road.

10) Want to try a specific thing? Look up videos from others who have tried the same thing for ideas. Many things can be adapted when you think creatively and build on what others have done.

11) be aware of medication and risks to sun sensitivity and thermal dysregulation/heat or cold intolerance. Invest in the right gear to help alleviate these issues.

12) when traveling out of state, province or country, search for the best quality, most recommended travel insurance that ensures that your coverage won't be denied for any medical history you may have forgotten to disclose. These policies are more expensive, but when you end up in a flare and need assistance, you won't be sorry.

Finally, limit your big trip events to one every 4 to 6 months. Sometimes we don't see a flare coming until it's too late. Make sure your body feels strong and your mindset is positive before jumping in. Postponing events is not a bad thing if you are at all fatigued or sick; it just mean you will see them at later date when the stars line up better.

Good luck! I Julie Andrade shared a post today on Facebook with her recent adventured and I hope that it inspires everyone!

Have you had an outing and want to share your experiences? Please go ahead and reply below!

Note: it can take about 3 years post initial symptoms/diagnosis to be ready to attempt this. In the first years, focus on learning your triggers, your pacing, your reaction to trips in the car, including up to 3 days afterwards. A pain App can help you learn your baseline, react to triggers and devise best pacing plans prior to the next step of actually planning a trip.

I have shared a number of my tips about learning your triggers, pacing, how Occupational Therapy can assist you in reaching your goals etc. Take a look at our Discussion section at www. acmcrn.org/blog and https://www.acmcrn.org/groups

for other relevant posts! Search under my name.

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