There are many times I wish I would have blogged more about our most trying times with living with a chronic illness. I find it really helpful when others do, maybe I could have done the same. But, then I remember that during the worst of it all, I did not have enough energy. I could barely move some days. But, I remember. I remember what helped, what made things worse, and have learned a lot along the way. I am still learning. We are still learning. Chris and I are a team and we are learning together.
So, I will blog about things off and on. Things that come to mind that may help others or help bring more awareness about living with a illness that is invisible, annoying, and just won't go away.
Today I would like to share a few thoughts on traveling.
Traveling is normal in our family, a common occurrence. So common that we could pack for a quick trip and go through airport security in our sleep. Chris travels for a living, or rather takes people who are traveling where they need to go. I have always loved to travel, see things and do things. Chris and I both love to travel together and explore new places together. We had grand plans for the first several years of our marriage. Plans of traveling all over the country and world (as time and our bank account would allow.)
But, during the first month of our marriage my health crisis put a firm stop to that. So much so, I got stranded in Pennsylvania for four months. At first I was too weak and way too vulnerable to travel, I had to (and still do) be super careful of where I would go and what I would be exposed to. Exposure to mold, toxins, pesticides, chemicals, smells, noise, germs, people, buildings, etc etc would set me back for weeks and weeks. I had to live a bubble. Sometimes I would try to go somewhere just because I could not stand it any longer, only to realize I was much happier in my safe zones.
Lately, we have been doing a lot more. The reason is, I have been improving, I have gotten stronger and have found ways to work around my illness with wisdom (and sometimes not, remember, I am still learning.) But, I occasionally get comments and a few times I could just tell people were thinking..."You look fine, why do you still say you are sick?", "You flew here and did this, you must be better enough to get a job.", "She must have made it up, look at her, she is traveling and looks perfectly normal." Um, no. You get to see the smiles on Instagram and Facebook. You are not living my reality.
You get to see pictures like this...
But, you haven't seen this one. (I hate that bird like face I make...ugh)
But what you don't know is that in that first picture above (taken in Jackson, Wyoming a few weeks ago), I am in pain. I am really happy and excited, but I needed to eat and I was in pain from something that we are waiting to hear the tests results for. What you don't see is what we go through on some flights were someone bathed in perfume and I get really sick from it (as in the third picture). Or the flights when I pulled out my little filter mask and look like a totally freak. What you don't see are the tears at the airports, on the plane, at the hotels or even family member's guest rooms. I try to make Chris laugh even when I want to cry, I work hard at keeping a good attitude about it all. Chris works hard at reminding me that I have felt the same feelings and symptoms before. That it's a "hit", but we will make it through. But, we are all human and it's ok to cry. It's ok to admit that the world around you feels like it is falling apart. You learn, you live that moment, you walk away knowing more than you did before. We cry together sometimes. Chris holds me and tells me he believes me and it's going to be ok.
So, this is not just about me. It's about anyone you know that has a chronic illness or an invisible illness etc. Don't rain on their parade. If they are having a good day, rejoice with them and if you are like Chris....remind your person to not over do it. If they do, hold them and cry with them. We want to live as normal as we can. We over do it and pay, but it's so nice to have someone to love you and encourage you through the good and the bad.
So, here are a few practical things we have learned about traveling with an illness.
- Get a wheelchair at the airport if the walk is too long. Man, it's one of the most humbling things I have ever done. I felt like there were so many people that needed it more than me and I thought I could walk. I couldn't. There was no way I was going to make from the front door, through security, and down to the gate last December (when the second photo was taken). I did not have the strength. It's OK to ask for or accept help.
- Take your time. Don't allow yourself to feel rushed by anyone. If you need to take a break and sit down, sit down. Take care of YOU.
-When flying, wash your hands and wipe down surfaces around you. I forget about this a lot, but there are a lot of ick on surfaces at airports. If you have any type of immune issues, you have to watch out for all kinds of germs. I love my little Thieves hand sanitizer bottle. I am still learning about the best way to wipe down surfaces, so anyone out there have some thoughts? (*Note: I just found this DIY disinfecting spray and I am looking forward to giving it a try!)
- Bring your own or buy (when flying) filtered water. Add a pinch of pink Himalayan salt to avoid dehydration. Tap water can be pretty dangerous for many of us.
- Pack your own foods. This may be a whole other post someday. But, we have learned to pack three or four days worth of "safe" food in Chris's travel cooler and have survived. :-) Make small meals and pack them up in plastic or glass storage containers. Make hot cereal packets with what you can eat and just add hot water. Take soup! Yes, even on the plane! If you freeze a jar of soup and take it through security totally frozen, it will thaw by time you get to where you are going and it's ready to be warmed up. Stuff like that. It's SO hard to find the right foods while traveling when you are on a strict diet. Its frustrating. I like to pack a few treats that I can have and bring them along. It helps to treat your self while you are surrounded by a billion "no" foods at an airport or destination.
- When I can, I started bringing along my own pillowcase and sometimes a sheet and small blanket. I keep it simple if I am flying, but when driving I have more room. :-) When driving, I bring my pillow. That way I have a less of a chance of reacting to the bed linens wherever I am staying.
- Don't forget to pack your supplements. Been there done that...and paid for it. Find ways to neatly organize and pack your supplements that best works for you.
- I did this for the first time and it was definitely not the last.... Take an essential oil diffuser! This last trip to Jackson I was risking it BIG TIME staying at a new to me hotel. I should not have risked it, but wanting to go away and be normal got the best of me. But, I took precautions. We opened up the windows, looked the room over in case we found something and needed to change rooms, and plugged in my diffuser. I used Thieves the whole time, but brought Purification along just in case. I am proud of that move. :-)
- Do some research ahead of time and check out all the places you can find food to eat. Even if I packed something, I like to have a back up plan. Plus, it's always fun to get a treat! It's the little things right?
- Learn to ask the right questions. This one you learn on the fly. Learn what key words people will understand and how to get through to them.
- Know your limits and set boundaries. Know where you can and can not go, and know how much you can handle. Ask for those around you to respect that (hopefully you do not have to ask for that respect, but unfortunately it is a reality). Sometimes a place is too over stimulating, loud, smells of chemicals, is moldy, or whatever your restriction is. It's ok to say no. Your no may be short term or long term. You know your own personal limits better than any one around. Set boundaries and be firm. There are some places I can not go into. It's not because I am out to hurt the home owners or my friends, it's because I just can't. Some buildings make me really sick and I have to be wise and say no.
- A note to the host or hostess of a chemical/toxin/etc. sensitive person: Please do not feel offended if your guest can not come into your home or has a reaction and has to leave. It's not you. It's not personal. We hate to disappoint a loved one or when we can not go to a place that we once loved. We walk into every building already carrying the burden of knowing we might have to leave. There are ways to love your person and make their visit less stressful and healthier, which I will address in a future post.
I know I am missing more travel hacks and if I think of them I will add them.
Traveling is enjoyable, but also tiring. Remember that (and I am speaking to myself here too) the several days following a trip, do not be surprised if you feel horrible. Rest, rest and rest. Learn how to not push yourself during a trip, but also remember that no matter how much you pace yourself...any kind of travel takes a toll. Don't be like me and slightly freak out a few days after a trip and wonder why in the world I feel like I am falling a part. :-)
Travel when you are able, rest when you need to, and enjoy the good days!
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