You know, I kind of view myself as a happy camper. I have more things (ahem… knitting projects) going then I can get finished on any given day or week, books lined up to read, and a “to-do” list that I’m slowly working my way through. Hey, people, I fixed the loose tiles on my kitchen floor last week!! My cat MacKenzie is my constant sidekick throughout the day as I knit, work in the garden, read in bed, and even with me (underfoot, demanding cookies) while I’m cooking. Even on the bad days when I’m pretty much down for the count, I manage small victories. There is just one problem with this picture.
I just don’t fit in the world all that well anymore. In my home, living the life that I’ve created for myself, it is really easy to forget how much I have adapted to accommodate the limitations of my scleroderma, Sjogren’s, and fibromyalgia. Once I go anywhere else reality hits me hard. Every trip out of my house is going to come at a cost. Here are the worst of the offenders that will lay me low.
Air Conditioning I know that almost everyone in the world is grateful for air conditioning in the summertime, but for me it is a royal nightmare. The shock of walking into a refrigerated building on a hot summer day will trigger an immediate Raynaud’s attack. I pull on long sleeves and fingerless mitts as soon as I get into the building, but my lungs know what’s up and I have trouble breathing. The airflow makes my eyes burn; I’ve been reduced to wearing my sunglasses indoors to protect my eyes. Don’t even get me started on the refrigerated cases churning out cold air; you haven’t lived until you’ve had to pull up the hood of your sweatshirt and the sleeves down over your hands so you can score some butter and eggs. If that wasn’t enough, there are also usually…
Scented Products Almost all buildings use scented cleaning products and sells additional items with scents. Candles. Lotions. Laundry soap. The scented bathrooms are a nightmare. If I’m not already in trouble with my breathing I will be if I have to walk down the laundry detergent aisle at the grocery store: I also start to itch and my face swells. Why do these chemicals even exist? They can’t be good for anyone!
Restaurants These are a special kind of hell for me. All the drinks come cold and with ice, and the entrees are served piping hot. There are other landmines that I need to avoid: salt, lactose, fiber. I have to carefully select something that is very soft and that will behave itself in my gastroparesis stomach. I can’t have spicy food. I can’t eat fresh veggies. Actually, to be safe, some of this food should go through a blender… I actually once soaked a cut up sandwich in soup so I could eat it…
Walking I am trying really hard to meet my walking goals every day, but I stretch those steps out over the day. A trip to run errands can be just exhausting if I’m on my feet for a couple of hours at a time. I need to always carry water, be aware of the location of bathrooms, and have places where I can sit down if I need to.
Sunshine It makes me sick! Enough said.
Recently I had a tough talk with myself about pruning down my outings and being more strategic about how I expend my energy. I need fewer outings, and my destinations need to be closer to home. I need to live online. I need to in a safe environment as much as I can to manage my diseases.
My home is my safe house. I have no air conditioning and I minimize air flow. I keep the temperature in the mid 70’s in the day so that my joints and lungs will be happy. I cook all of my own food, I don’t own any salt at all, and everything that I drink is room temperature. Fruits and veggies go through the blender to become smoothies. Every product that comes into the house is scent free. I’m always close to a bathroom or a soft surface to crash onto for a quick recovery if I get dizzy. My stairs have wrought iron rails that I use effectively on bad joint days. Flourishing in my safe house I sometimes forget how sick I am because, well, I have fewer problems.
Tomorrow I have a doctor’s appointment so I listed up some symptoms and issues that I need to ask her about. It is quite a list now that I look at it, and it kind of underscores how chronic illness can trick you into thinking that things that would normally send you screaming into urgent care are “just another day of scleroderma.” Shortness of breath is an almost daily thing. When I glance into the mirror these days I sometimes notice that my face is blue. One hip keeps failing me; okay, I actually have to lift that leg to get into the car. My joints swell so much that I can’t sleep at night.
But I am good, here in my little safe house with my gardens and cat.
Tomorrow my doctor and I will attack some of these scleroderma/Sjogren’s issues. I kind of think that lung testing and a MRI of my hip are in the future, and that there may be follow-up with my pulmonologist. I’ve been gathering up my energy in preparation for these outings into a world that is dangerous for me, knowing that after each outing my garden swing, knitting and latest book will be waiting for me. With a room temperature ice tea.
It is good to have a safe house.
23 thoughts on “The Scleroderma Chronicles: Safe House”
Despite your struggles your spirit shines through – even though you don’t give MacKenzie enough cookies
Thank you. The aren’t enough cookies in the world to satisfy MacKenzie!
You are seriously the queen of all rockstars. The things you have to deal with on a daily basis would bring me, and many others, to my knees in defeat. It’s so easy to not give much thought to what others go through. Thank you for that reminder.
Wow. I love the “queen of all rockstars!” Thank you. I’m going to whip that out the next time my hip gives me trouble. As in ” oh, no you dont! I am the queen of all rock stars and you need to behave yourself!” You just made my day.
I have learned to be more respectful of people in the handicap parking. Just because someone looks okay doesn’t mean that they are.
I’m glad I made your day! And I’m hoping it’s a great day! My day will be spent finishing the second sleeve on one sweater and doing a button band and seaming on another! Hopefully both will be completed sooner rather than later, lol. I want to get back to my hybrid vigour in the worst way!
How thrilling; you’ll have two major projects done! You show that sleeve who’s the boss! I’m finishing up a little mitt today (doing the thumbs is worse than 2nd sock syndrome) and then it is back to endless garter as I put more milage on my What the Fade shawl.
I can’t imagine how you deal with everything you do. I have peripheral neuropathy which effects my feet, ankles and legs. But after all your’e going through I’m not going to complain.
I also have peripheral neuropathy, but so far I’m managing. My hands keep falling asleep every time I grip the steering wheel, and my feet demand only the best shoes. So annoying, huh.
I think that there is a curious point in chronic illnesses where there are so many issues that they just kind of become your “normal” and it’s easy to ignore serious symptoms. I’m trying to not go down that road, hence today’s doctor’s appointment.
So glad you have your Safe House… your garden looks heavenly, hope your butterflies arrive soon! I identify with many of your issues, especially grocery shopping, even with gloves my Raynaud’s triggers painfully and so tiring to walk through big stores. Stay strong MK, hope things go well with doc.
Isn’t the grocery store the worst?! I’m resisting getting my groceries delivered, but it may come to that someday.
The big stores are the worst!! They should have a little nap/rest area in them, don’t you think? 🙂
Wouldn’t that be something? Maybe add a little space heater or fireplace to warm-up too!
Thank you for sharing this. I wish I was there to give you a hand:)
The scent thing really is bad. I don’t like the fact that everything comes in multiple competing smells. It’s very hard to find unscented everything.
I am highly motivated to locate unscented products, and it is really, really hard.
I do get lots of help from friends and the best neighbors in the world. My kids are stretched pretty thin, but one son especially helps me a lot. Life is pretty good.
My heart goes out to you. You’ve done an amazing job understanding your needs and then working to fill them. I’m glad there are things you can still enjoy like knitting, kitty time and even a room-temperature “iced tea” but what a slog nonetheless. Arms around you.
Thank you so much. I have to be honest, some days are just exhausting but I’ve learned to not dwell on what I can’t change and to focus on what I can do. It really helps to have a short memory of symptoms and to not worry about what can’t be changed. It’s like a Jedi mind trick, but it works!!
Think how hard the wasps have worked to create their paper home! Such a cool cat 😎
Now I feel so guilty about considering getting rid of the wasps. 😦 It is really cool watching them work, but they are very close to where I have to walk. I guess I’ll just keep an eye on them for now. The cat stays away from them so that’s good.
I am so sorry that you are in so much pain and there are so many common things that cause you so many difficulties! On the other hand, I’m glad you have your home with your garden and Mackenzie and can be comfortable there. Hang in there – hugs!
It’s all good today. My doctors appointment went well and she started me on a couple of new prescriptions that are already helping a ton with my breathing and pain. Today I read in the garden and it was great!
I love you, Marilyn! You truly are my hero. ❤️
Okay, Melinda, now you’ve made me cry! Thank you for all the positive things that you’ve said, and for always channeling love my way. I may be mostly homebound these days, but people like you keep my world large.
Hugs! Hope your school year goes well!