Christmas With Lupus: What We Really Want
The season of giving is upon us and the magic of the holidays is filling the air. This Christmas, there are a few things we lupus warriors would really love to receive above all else:
A Break From the Constant Fatigue
Having lupus can mean you’re constantly ready to fall over and sleep for about eight hours. The fatigue lupus patients have is totally different from the sleepiness most busy people experience on a daily basis.
Instead, with lupus, it can even be difficult to do something simple like take a shower or take the dog for a walk. As such, being tired can be a constant struggle and it can be difficult to get through the day. Us lupus patients would love just a few days where we can do everything a normal person does in a day.
Though sometimes the amount of sleep we get doesn’t actually affect how tired we are, when we aren’t flaring, getting a good eight hours of uninterrupted sleep can be the difference between being able to get everything we need to do in a day done and giving in to the sleepiness.
Of course, most of us with lupus have a family and pets, so getting a full eight hours of sleep can be just as difficult for us as it is for anyone else.
A Vacation from Endless Pills
Ever have those moments where you can’t remember if you took your medicine or you just thought about it? Sick of counting out pills every week to put into your pill container? Yeah, most lupus patients would love a break from that!
Instead of having to keep track of all of the medications we take in a day, most of us would love a few weeks off from stuffing endless pills into our mouths and taking breaks from social events and time with friends and family to take them.
Family and Friends Genuinely Understanding What You’re Going Through
Most people with lupus have likely had an interaction with a family member or friend that was none too pleasant. Whether they think you’re wallowing in your illness, playing it up for sympathy, or taking it personally, it can be really emotionally taxing to have to account for other people’s feelings as well as your own when you’re not feeling well.
It would be extra amazing if everyone’s family and friends magically understood exactly what it was like to have lupus and instead of pestering us, let us know they care and understand.
No More Raynaud’s
Lots of people with lupus suffer from something called Raynaud’s disease, where the circulation isn’t particularly great in the hands and feet. During times of the year when it is colder, this can lead to fingers and toes turning purple and even a stinging or painful sensation.
Gloves can help, but they don’t always do the total trick. This makes winter especially awful for lupus sufferers, so I’m sure most of us would absolutely jump at a Christmas gift that meant more comfortable hands and feet during the colder winter months!
No More Hospital Stays
No matter how nice of a hospital you’re in, there is absolutely nothing fun about being in one. The repeated jabs of blood work, the constant shuffling in and out for vital checks, and the tedium of doing nothing more than laying in bed and waiting for your daily visitors is awful.
No More Hospital Stays
Yet, those of us with lupus will likely find ourselves in the hospital at some point or another. This Christmas, I’m sure many lupus patients would absolutely agree with the no hospital gift.
No More Pain
Most people with lupus live with some amount of pain on a daily basis, meaning that at any given point they will have some pain in their bodies. This can range from mild aches to quite extreme pain.
It can be caused by anything from arthritis to having parts of your body swell for apparently no reason. The pain can be a great inhibitor when getting through your day and make it more difficult to get things done, so a vacation from the pain for Christmas would be an absolutely welcome gift!
Being Able to Go out With Friends and Party!
Over the holiday season, especially, there are likely to be numerous parties and events we’ll be invited to that we’ll end up having to bow out of with great regret. Even though sometimes people take it personally, lupus patients are the ones who suffer the most from missing these social gatherings.
As the holidays are a time to get together with family and friends, catch up, drink and eat, we definitely want to be included in the festivities. It just sucks that sometimes our illness gets in the way of it.
No More Unsolicited Advice
Chances are anyone with chronic or long-term illnesses has been given advice by someone who thinks they can cure their disease. Whether it be through a magic diet the person read about on the Internet, or rubbing some kind of snake oil on their body four times a day, you’ll always encounter people who think they know better than your doctor.
Sometimes, people can even be slightly aggressive and rude about it because they believe they have the cure and you’re just refusing to take it. It can not only be annoying, but can ruin friendships and can even eventually cause harm to lupus patients.
Although eating a balanced diet is incredibly important (as is using whatever potion or tonic you feel helps you), it doesn’t mean it can replace medication or advice from your doctor. People who cease medication because they feel better on a certain diet can run the risk of doing even further damage to themselves and end up very ill.
It is important to always consult your doctor before trying a new diet, or if you’re feeling like you want to adjust the daily intake of your medicine.
A Happy Holiday Season for All
Whether you’re celebrating Christmas, Hanukkah, Kwanzaa, or a combination of the holidays, most of us lupus patients just want a happy and healthy holiday season for ourselves and our families.