Hold on to what you’ve been given lately Hold on to what you know you’ve got Hold on to what you’ve been given lately Hold on ’cause the world will turn if you’re ready or not
– KT Tunstall
I have loads of stuff I want to post about, but that’s all getting moved to the back burner for now, even the half-finished posts I wrote while I was away.
At the moment, I am just full of gratitude. It isn’t that I’m not normally grateful for what I have, but sometimes it takes some pretty important events to drive it all home, especially when you’ve got depression and/or chronic physical illnesses.
In this case, there are two factors. One is the fantastic time I had in Seattle with relatives I hadn’t seen in a long time – definitely too long. I had been a little worried about going out there on my own, and about how I’d be received after such a long time, but I really need not have worried. They were as welcoming and loving as ever. They treated me with so much warmth, kindness, and generosity. Their hospitality was amazing. I kind of feel like I’m generalizing by saying “their” – a whole lot of my relatives were there for this event – but really, it’s true of every one of them, and I love them so much.
(I also met a longtime online friend, which was great, and enjoyed Seattle immensely. More about all of this later, I hope.)
The other factor is this: last night, I had a nosebleed. That makes it sound so simple, but actually, it was not at all. I apologize for the nasty details that come next.
Last night (or maybe very early this morning), blood started gushing from my nose and mouth, and I vomited a few times. Our bathroom looked like a crime scene straight out of CSI. (I’m glad I was in the bathroom when this began, at least!) My husband had to call 911 and get an ambulance to take me to the ER. I have never been so frightened in my life. I thought I might be dying. I had never seen so much blood. I hadn’t even had a “normal” nosebleed since I was a kid, and I had never coughed up blood before.
We were in the ER for several hours last night/this morning. My husband was by my side the entire time. I received good treatment there. They wound up suctioning out a lot of the blood and packing my nose with this weird inflatable thing. It hurt like crazy going in, and didn’t stop the bleeding, though it certainly slowed it down.
When we came home, I managed to sleep for a while even with the packing in my nose (which is no small feat – I am not so good at breathing through my mouth). My husband got me an ENT appointment for this afternoon and took me over there, and again, was by my side the whole time (except while he was parking the car). 😉 The ENT cauterized the place where he thought the bleeding had started, and, lo and behold, my nose has not been bleeding since.
Going through this made me feel exceedingly grateful – for my husband, for my loved ones, for good medical care and good medical insurance, for being able to breathe. I wanted to take the time to share that gratitude, because sometimes it gets hidden by having chronic illnesses, but it’s still there. It’s always there (at some times more than others, but yes, always).
Any of you have similar experiences you’d like to share?
This may become a series of posts (hence the “part I”), because I can’t imagine that I will be able to post everything that needs to be said about this in one entry. Much as I would prefer to be writing about traveling with chronic illnesses in general, I feel that I need to write about myself and my own experience right now. Perhaps what I go through will be helpful to other readers.
I will be traveling solo to Seattle on Thursday for a family event. (I plan to follow up on this post when I get back, or maybe even before if I can post from my tablet, to let you all know how it goes.) I am really looking forward to it.
At the same time, preparing for it is taking a lot out of me. My anxiety level has been through the roof since last week, although a lot of it is excitement about going to a new place and seeing people I care about. I’ve been having a lot of trouble sleeping, which can really mess with the fibromyalgia.
When one has a chronic illness, even planning for a day trip can become extremely difficult. This is a 6-day trip. There are the “normal” things I have had to do, such as finding a new dress for the occasion, which was mostly fun. (My dress is fabulous, if I do say so myself.) I also got matching accessories and made matching jewelry. I may have gone a bit overboard, but again: fun. I bought a book on Seattle and have been trying to figure out what to do with the few days of spare time I will have there. Also fun.
Then comes the not fun stuff. Least fun of all is the anxiety. I’m sure I should be meditating or doing something to help myself relax, but I am completely wired, and so far I have found that medication is the only thing that helps. Not so good, but at least it’s something.
I have had to make tons of phone calls about special accommodations and arrangements. I have had to get drivers to bring me to the airport and drivers to pick me up at the airport on the other end. Since I need help with my luggage (as in, I can’t even get it out to the curb – or even lift a checked bag from the baggage claim), I’ll need to pay a little extra, since I have to get a car service and not, say, an Uber or a regular taxi. We cannot afford any of this, but I’m pretending we can.
I have also been in touch with the airline I’ll be flying with and the TSA about getting around the airports themselves. Since I cannot roll my carry-on bag, I will need assistance. I have been told that there is no way to get someone to just wheel or carry my bag for me – I need to get wheelchair assistance specifically. It does not matter that I do not need a wheelchair. Wheelchair assistance is the only way to guarantee that someone can help me get my bags to the gate.
This will be weird for me. I am not at all used to riding around in a wheelchair. As a result, it may make me feel like a bit of a phony. I will have to figure out a way to deal with that. I cannot let my pride get in the way of getting any assistance I need. (Also, I’ve been told that you get through security much more quickly when in a wheelchair. I plan to test this theory.)
I have about a billion things I need to put in my carry-on bag. I plan to bring a checked bag as well, but all I can think of to put in it are my casual clothes and less necessary toiletries. The majority of my stuff needs to be with me at all times. In my carry-on, I will have my dressy outfits for the events, prescription medications (a gallon ziplock bag full of small bottles as well as a very small cooler for my prescription eye drops), snacks and sandwiches (because there is no guarantee that I will be able to find anything in the airport or on the airplane that meets my dietary restrictions, and it’s a 6-hour flight), my heating pad, and the toiletries I cannot live without if my checked bag gets lost. This is going to make for a very full carry-on bag. I will also have a smaller tote bag inside my rolling bag, which will contain my Kindle and various other things I will need while on the plane.
I have no idea if this will all fit into my little rolling suitcase. I will probably do a trial run later to find out. I wanted to put a jacket in there as well, since it’s been colder in Seattle than it has been here, but I know I will not have space for that so I’ll have to put it in my checked bag instead.
The family member who is making the food arrangements for this event (as well as lots of other arrangements, I’m sure!) – which includes a dinner, a service, a luncheon, a party with another dinner, and a brunch – has been very patient with me while I bug her about my dietary restrictions to find out if I will have enough to eat. I am really grateful to her for this. I can carry lightweight snacks around with me if absolutely necessary, but I cannot bring a whole meal with me because I will not be at home where I can make myself a sandwich with bread I can actually eat, and because with my neck and shoulder pain it’s already hard to carry anything extra in my handbag. Also, it is incredibly awkward to be at a gathering and have to bring your own food – or eat beforehand – because you can’t eat anything that’s being served. This is because, no matter what I say, other people feel bad for me. I do not want pity. I just want food. LOL!
I have not written much about it here yet, but gastroparesis makes my stomach very particular about what I can put into it without getting sick. Unfortunately, that means my diet is not as simple as gluten-free or soy-free or even low acid. It is very hard to explain to others what I can and cannot eat. This is in part because it doesn’t seem to make much sense a lot of the time. I can eat dairy products, which bother a lot of people with stomach ailments, with no problem. However, for example, I cannot digest raw vegetables. (I will eat most cooked vegetables even though they may set me off, because nutrients and all that.) I cannot eat wheat, but I do not maintain a gluten-free diet. I can digest small amounts of gluten, such as those found in spelt (aka farro or faro, one of the “ancient grains”). I also do not have to worry about cross-contamination because I do not have Celiac Disease. That is my diet in a very small nutshell, and I’m sure I will be posting more about it as time goes on.
Mainly, my point here is that I have a lot to think about that the average healthy person probably does not when they travel. I cannot walk long distances (and some airports are HUGE!), I cannot stand for very long, and I need to keep myself fed. I have to figure out how to keep my anxiety under control while waiting at a crowded, noisy gate. Then there are the things that are completely beyond my control. For example, I may wake up Thursday morning with a fibromyalgia flare or a migraine headache. If that happens, I will have to medicate myself and hope for the best.
All in all, travel is a huge hassle – but well worth it. I just hope things will go as smoothly as possible.