Everyday Life With Lupus
What healthy people don’t understand about everyday life with lupus. Is that everyday life is different for us. I can’t make definite plans for Wednesday on Monday. Monday I might be able to function but on Wednesday I can’t get out of bed or vice versa. Lupus literally affects every part of everyday life. Everyday with lupus is an adventure, to say the least.
Why I always say maybe or I’ll let you know for sure later or closer to a specific day or time. Isn’t because I don’t want to see my friends and family. It’s not an excuse or me just trying to avoid and ignore you. Somedays I physically can’t function even in small insignificant tasks. Like combing my hair, bending over to pick something up or even talk on the phone. I am literally learning to live a completely different lifestyle.
“A Million And One Ideas is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for us to earn fees by linking to Amazon.com and affiliated sites.”
Of course, then there are the insecurities I feel. Like when I run into someone at an event or store and they can’t hide the look of surprise at how different I look. I have gained a lot of weight on top of the swelling and inflammation. I have dark circles that look like someone gave me a black eye. I have aged a lot in the last 7 or 8 months, I feel like I look 10 years older. No matter how much or little make up I wear it shows. My already thin hair much thinner because it’s falling out. My skin is dry and scaly.
The Exhaustion From Lupus
I know I mentioned this in my last post, but it is worth mentioning again. I think a lot of Lupus sufferers would agree it’s one of the hardest things to help others understand.
When I say I’m exhausted or feel exhausted it is not the same exhausted feeling you get from a long hard day or week at work. The exhaustion is hard to put into words it’s a deep body and mind-numbing exhaustion. The type that no matter what you do or how much you sleep you get no relief. If I were not raising my grandson and have a reason to force myself out of bed there would be days or weeks I could literally do nothing but sleep.
That exhaustion affects so many other aspects of life in ways you would not imagine. On some days I can’t even force myself to stay awake and fall asleep talking and have even felt myself nod off while doing dishes and other daily tasks. On these days no worries you will not catch me driving. Just as I won’t drive the days my dizziness and ear ringing are more intense. It never stops, but I’m learning to read signs of the worst days and adjust my schedule accordingly.
A Scale Of 1-10
You could try to judge my days on a 1-10 scale with the exhaustion: one being I’m having a great day feel a little energized and ten is my worst and a snail could outrun walk or outwork me. Pain levels basically the same scale: one being it’s not too bad and tolerable ten it’s so intense nothing brings relief it hurts to stand to sit or lay.
Why I’m Not Able To Work
Right now I, unfortunately, have no medical insurance and can’t even begin getting treatments and medication so I can try to live a normal or close to normal life again. My employer fired me once the Drs said they couldn’t give them an answer for a return to work day or if I could even return to that job.
You would think someone who is unable to work and whose Dr won’t release them to work could get some type of medical assistance. The process is daunting and frustrating having applied for longterm disability and other avenues to just be put on hold or denied.
I decided to try and start up my own little business, but as with any startup, this is a slow process. No, I’m not giving up because I know I have a lot to offer and I sincerely want and enjoy helping others. Then I started this blog, which is something I have wanted to do for years and I love it!! And it feels fabulous when someone reaches out just to say thank you because something I said or did resonates with them!! That’s a great feeling and what I hoped for. If I only make a difference in one person’s life I consider that success.
Typical me I got a bit off topic. I’m not able to work because I’m not able to function at least 75% of the time. Which then brings on other issues that go along with Lupus, like depression, hopelessness and if I allow it self-pity.
Things I Used To Do Without Effort Or Thought And Now Can’t
Think about your typical day. The alarm goes off you roll over shut it off get up and jump in the shower or work out. Whatever your daily routine may be.This used to be me too.
Now the alarm goes off and I know I set it 15 to 20 minutes early because I have to force my mind to wake up and make my aching clumsy body move. (this is physically painful and mentally exhausting) So before I’m even out of that bed I’m ready for a nap.I literally have to tell my legs to move. Then depending what my body decides to do I might be able to get a shower. But if it happens to be a day when my skin feels like it’s on fire or needles are poking me I skip that torture.
The Little Things
Little things that I used to do without thought, like putting on makeup, blow drying my hair. Cooking dinner, jumping in the car to run to the store two blocks away. Those things are now a challenge and take twice the time and effort so a lot of days I just don’t do it. Clipping my nails or filing my nails. Wearing “real clothes” I practically live in sleep pants and yoga pants because they cause less pain. They are definitely not attractive but you give and take.
I could list a 100 things, but you get my point. Life is just not the same and trying to learn ways to cope has been a struggle, but I’m working on it and figuring little tricks out here and there. Meditation and relaxation techniques, taking supplements and using essential oils. I just started with the oils and have no idea if it will make any difference. The meditation, however, does help with the anxiety and depression.
What I’m Grateful For Everyday
Number One GOD! My foundation the one thing I know I can count on is that no matter what I’m going through he is by my side.
My family and my girls, go out of their way to try and help me. Whether it may be a phone call a visit, words of encouragement. Just saying I love you and it will be ok. My girls, bring me such joy and pride. I love them to the moon and back!
My grandson who is 14 and we can all remember 14 it’s not an easy age under normal circumstances. He surprises me daily. He’s understanding and thoughtful even when I know it’s not easy. I hate the feeling I have when I have to say no to things I normally wouldn’t. But he never complains.
Lastly, those of you who take time out of your day to stop by and read my posts!
Healthline released a list of the best lupus blogs for 2017 and they are all fabulous you can check those out here.
If you haven’t read my previous posts on this journey you can find them out here,
Have A Blessed Day Myla