“I enjoy the spring more than the autumn now. One does, I think, as one gets older.” Virginia Woolf, Jacobs Room
I must say I agree with Virginia when it comes to the above quote from Jacobs Room. Oh, how I love the Spring. The chirping birds, the buds that start their birth to earth once again. Thoughts start flying around in my head, dreaming and visualizing of the things I want to do outside. Does this happen to you also? Gardening, raking, planting annuals and new perennials? So many dreams I have! That is until I head to the nearest gardening store and realize I don’t have the money for them. Ha!
Planning. Another verb that pops in my head. When will I do the things I so love to do? I’ve been waiting patiently for Hubs and me to own our home. I never wanted to do anything when we lived wherever we were renting. Even when we rented a farm. Why plant something when you won’t be able to take the beauty of all your hard labor with you?
But now that we have our own home, I sit here looking at my yard trying to figure out when I’ll be able to work in it? My reason for wondering? Lupus.
- What if I start working and get too weak and sick to finish it?
- When will I be able to do it? If it’s hot outside, I’ll probably pass out.
- With my photosensitivity it may trigger a flare, the pain in my joints will worsen, my fatigue will worsen (if that’s even possible), and what if I break out in rashes?
“Many people with lupus experience photosensitivity or unusual sensitivity to sunlight. This can trigger symptoms such as skin rashes, itching, and burning. Excess sun exposure can also cause flares in systemic lupus, triggering symptoms such as joint pain, weakness, and fatigue. In some cases, it can even cause internal organ damage”. -Healthline, Brenda B. Spriggs
And, we all know organ damage could be deadly. Is it worth being out in the sun? After spending all last summer severely sick and bedridden, I have to say yes. I know that may sound weird but being in my house all summer looking at the beautiful trees and grass swaying. The flowers, the animals, and hearing the birds… made me feel like a prisoner. It was so sad and depressing. I didn’t have a choice last year because I was way too sick to even try… but this year, I’m giving it a go! I don’t want to waste one precious moment of my life, and I’m so looking forward to it! If it causes me to get too sick, I’ll stop. But until then, I want to enjoy it.
These are things that the majority people don’t have to think about. So, todays topic is going to cover some ways that we chronically ill Lupus warriors can protect ourselves in the warmer months, so that we can hopefully enjoy them.
- Purchase clothing with tighter weaves: I realize that lighter weaves are SO much more comfortable and freeing. But the tighter weaves protect us from UV light, which is very damaging to our health. Wear pastels, and whites. I love wearing white in the summer, except now I look like a ghost since I also can no longer “tan” (insert cry) “Goodbye tanners and long leisure naps in the sun”. Darker and brighter colors ATTRACT more UV radiation. There are also clothes and hats that are made with sun protective fabrics that can be beneficial. Coolbar offers 15 % off when you sign up on their website. If anyone is interested I’m providing the link: https://www.coolibar.com/?msclkid=055cf515f25f1e8bbe16afdb561ec4da&utm_source=bing&utm_medium=cpc&utm_campaign=New%20-%20Coolibar&utm_term=coolibar&utm_content=Coolibar%20-%20Exact
- Broad rimmed hats: For me, this is AWESOME! I love hats and sometimes even wigs. Why style your hair when you can throw a wig on and it’s the perfect fit and look? I can understand why Dolly Pardon has always worn wigs. Barbara Walters once asked her in an interview how long it takes her to do her hair, and her reply was, “I don’t know, ‘cause I’m never there.” When people ask her how many wigs she owns she laughs and says, “Well, at least 365, because I wear at least one a day.” Who knows how many wigs she really owns? But, I love her honesty. How much money do you spend getting, cuts, trims, new styles, your hair colored, touchups on your color? For goodness sake, keep your hair healthy and get different style wigs. Heads up! You can also wear a wig AND a broad rimmed hat. Wowza. The possibilities are endless. (wink) Note concerning this topic: I know people with Lupus whom when lost their hair, stayed bald. I just want to tell you that you’re gorgeous and beautiful! You don’t need hair to be attractive.
- Downer: Long sleeve shirts, long pants, and full-length skirts. Just what I feel like wearing in the summer. Ok… I can handle long flowing white skirts… but wearing long-sleeve shirts and sweating is NOT fun! Not to mention, I can’t tell you how many people ask me why on earth I’m wearing long sleeve shirts when it’s 100 degrees in the shade. Then I need to explain to them that I have Lupus. Then they look at me like a deer in headlights. Then they ask me, “Why do you have to wear long sleeve shirts with Lupus?” On, and on, and on. Which is totally fine when it’s one person asking, but if you have different people on different days, asking you the same questions… it’s all you can do not to sigh and roll your eyes. We need to remember that they are asking because they care about us. So, bite your little tongues people; myself included.
- Pick your times: I’ve learned to pick my times very carefully. My favorite thing to do is to get up bright and early, grab my cup of java, and head to my porch. If I can make it before the sunrise; better yet. I’m excited this year because my porch will allow me to see the sunrise; although I won’t be seeing the sunset unless I look out my front door, lol. So, mornings and early evenings will be my selected times to do yardwork.
I’m hoping these ideas will benefit you enough to enjoy these beautiful seasons that are upon us. And for those of you who are sick, in bed, feeling like a prisoner? I’m praying for you now. I’m praying God’s healing hand on you. And I’m praying that you remember that it won’t be forever. We mustn’t lose hope with this disease. We must continue to fight by listening to our bodies and actually giving into them. Because when we fight the unenviable, it will only make us sicker. Know that after a bad flare, the sun will rise again. There will be a time for us to enjoy, and a time for us rest. Whether we want to or not; it is not our choice. It is something we have all had to learn the hard way.
I bless you from afar and want to remind you that you are all like the flowers of spring. You bring color, joy and hope. God bless each and every one of you.
For further research, I’ve included the following links below.
*Note: This blog automatically goes to all of Susan’s Social Media Sites. Therefore, if you would like to leave a comment, please do so on her blog. She does not always use her other social media accounts due to illness. However, all comments on her blog go directly to her. She thanks you in advance, and sends you all blessings and cyber hugs from afar.*