Dear World….

Hello world! This one is for YOU!!

No matter how hard we try there are always going to be some level of judgement within. But most of us keep that judgement to ourselves, and don’t stare people down or make comments when we think they shouldn’t be using that wheelchair, or parking in a handicapped spot or even just wearing a mask out in public. That being said many people don’t keep those judgments to them self and they make the rudest comments. Today this post is directed to those who can’t keep their judgments to themselves.

Yes, I know what you are thinking when you see me get out of the car that I just parked in a handicap spot. You look me up and down and then proceed to think, “There’s nothing wrong with her why would she park there!” And some will even glare or make comments. By looking at me all you see is what looks like a healthy lady in her thirties who’s only issue is that she is overweight! However, you CAN’T see my Illness! It’s INVISIBLE!! Meaning you may not be able to tell I have anything wrong by seeing me or even talking with me, unless I’m wearing a mask, or limping or even wearing sunglasses inside or using a cane or wheelchair. Otherwise there is no physical manifestation you will see!

You don’t know that even getting out of bed is hard. Getting dressed and ready is exhausting. And could take several hours just to get to point of walking out the door. Due to needing to take multiple periods of rest! By the time we finally make it to wherever we are going, whether it be a restaurant or a place to shop, we have no energy or spoons left AT ALL! You can’t see that it’s hard to breath, and my heart is beating way faster than it should. You can’t see the HORRIBLE migraine I am suffering from. Or know that the lights in the store or from the sun are making my head hurt that much worse. Or that the urge to vomit from said headache gets stronger with every step and movement!! But yet you continue to whisper and make comments and stare me down.

You don’t know that I woke up with a pain level of 8 and even after taking my prescribed dose of medication. I am still at a 7. You can’t see that every step is agony and every time I have to grab the cart to push it in the grocery store, that pain radiates through all my fingers, hands and up my arm! You can’t see the pain that is in my back and pulsating with every movement. Yet you still continue to stare and make comments and judgements.

You also don’t understand pain meds. You don’t understand that we would all rather do anything else than take pain meds. And NO most of us are not addicts and should not be treated like we are. If 99% of you were in our shoes you couldn’t do half of what we do. Because we have gotten used to the pain and know that I can’t stay home in bed just because I hurt. Because, if I did that I would never leave the house!!

I love when you see my mask and you turn around and go the other way because you are fearful for CATCHING WHAT I HAVE. Well, in this case the JOKES ON YOU!! The situation is actually the opposite. I wear this mask to prevent CATCHING what YOU have! You don’t know and can’t see it, but my immune system is to busy fighting off my body to worry about fighting off any germs i in contact with. What you may think is a just a small cold for you, could potentially put me in the hospital or even kill me! So I have to protect myself from you and the world!

And you will never understand what it’s like to have to stay in your home for weeks on end because the flu is running rampant in your area! What it’s like when you see people on social media and wish you could be out having fun. While instead you are stuck in your home because the flu for someone like me with Lupus could KILL ME!

The public will never understand the invisible illnesses. In general people will forever think that if there is no outward sign of illness, or pain (like a cast on a leg or a person on oxygen) they will most like assume that you are fine…..JUST LAZY! Which couldn’t be further from the truth. That has been the thought process for many many years and it will be hard to change. In general, the public doesn’t understand any illness that they can’t see. And we understand that. What we don’t understand is the need to make hateful and judgemental statements. How does that help in any situation?!?

I’m going to wrap this up with a few statistics for you regarding the invisible illness. And give you something to think about. Approximately 10% of Americans have a medical condition that could be defined as an invisible disability. And 96% of people with chronic medical issues, live with a condition which is INVISIBLE!! And most of those people don’t use a cane or assistive device that would show they are ill.

Perhaps after reading this someone will think before they judge! Hopefully, they will hold their tongue before making a rude and hateful comment. I know that’s wishful thinking, but I would hope that seeing this Information would make them think. If this reaches just ONE person who will change their thoughts about people using handicap spots or a wheelchair than I’ve done my job!!

With Love,

Amber

10 Ways to Survive The Holidays With Lupus

We’ve made it through Halloween and it’s almost the holiday season again. For most it’s a joyful time, but for those with chronic illnesses it can be quite the opposite. It can become a time of worry and planning. Planning how to make it through all the parties, the cooking, the crowds etc. A time of worry about the germs we will be exposed to, if we will get sick, when we can squeeze in naps, and how far in advance we can prepare dishes so we don’t have to do marathon cooking! The holidays are just plain exhausting, and for many don’t carry the excitement that they once did.
So what can the chronically ill do to make it through the holiday? It depends on the person and what illness they deal with. That being said the following is a general list of things we can do to get through this season.
1. PLAN AHEAD- One of the best things we can do to get through this season is plan ahead. Know what you have when and plan accordingly. If you know you have events several days in a row or an event that is long you can plan the remainder of your week so you can rest. You can move your schedule around so you have plenty of down time so you have the energy to get through your events.
2. TRY TO STAY AWAY FROM THOSE WHO ARE ILL- I know this is much easier said than done. But it is essential to getting through the holidays without getting sick. It never fails We go out shopping or to a party and come home sick. So don’t be afraid to wear a mask when leaving the house. I know you feel like you stand out and you get stared out. But really it’s for Your Health!!
3. REST, REST, REST- I touched on this above but to make it through the holidays rest is going to be essential. Between the cooking and the shopping and the parties if we don’t rest we won’t make it through the season unscathed and somewhat healthy!!
4. DONT FEEL LIKE YOU HAVE TO ATTEND EVERY EVENT YOU ARE INVITED TO- It never fails that during the Holidays there will be tons of events and people who want to get together. And that’s great and grand. But not at all plausible. So pick and chose the most important ones and decline the others. People will understand!
5. IF YOU ARE HOSTING A PARTY OR DINNER, DELEGATE! – There is absolutely nothing wrong with asking others to bring side dishes or dessert. Ask someone to come over before to help you, and start the party early!! Also try and plan dishes that can be made ahead of time and refrigerated or placed in the freezer till right before the event! Don’t be afraid to ask others for help to clean up!!! You don’t have to be the Lone Ranger! It’s okay to ask for help!
6. DO SOME OR ALL OF YOUR SHOPPING ONLINE- In order to conserve energy and preserve your Health do your shopping online. There really aren’t many things you can’t buy online. And most places will even do your gift wrapping for you!! Online shopping is the perfect way to shop for those of us chronically ill. If you are worried about additional costs, the prices are the same as in store, and with a few Google searches you can normally find an additional online coupon code to take a percentage off.
7. PLAN THE BEST TIMES IN THE STORES!- If you are a person that prefers to shop in the store or have an item that is only found in stores, that’s totally understandable. That being said try to pick the best times to be in the stores. Meaning when the crowds aren’t as heavy and the parking lots aren’t full. These times are generally first thing in the morning when the stores open or right before they close. If you have to be in the stores try to get to it before the huge crowds appear in the weeks immediately leading up to the holiday. Don’t be that person fighting the crowd on Christmas Eve.
8. STAND UP FOR YOURSELF/DONT FEEL BULLIED- Plain and simple you just can’t do it all. There is no way that you will be able to attend every party or gathering, do the cooking, the shopping etc. so stand up for you and what’s right for your body. And don’t let anyone bully you into changing your mind when you know it’s wrong. They don’t have to live with the consequences of pushing yourself too far.  So do what you know is right and feels right for you!!
9. BE WISE IN YOUR CHOICES OF FOOD AND DRINK! The holidays are known for being a time in indulge, or over indulge for many on all the great foods we don’t have all year. It is also time to be merry and have an adult beverage to celebrate. That being said if you know eating certain foods or drinks are going to make you sick be careful. No matter how good it may look and smell it’s not worth the result they may cause.
10. Last but definitely not least. FIND TIME TO TREAT AND PAMPER YOURSELF- I know the Holidays are meant to be a time of giving to others, but you need a treat now and then too. The stress of the Holidays and others attitudes can really bring a person down. So take sometime in the coming weeks to do something for you once a week. Whether that’s soaking in a hot bath, or getting a massage, or something a simple as curling up for the evening to watch a favorite Holiday movie. DO IT!! You’ll thank me later.
These are just 10 simple ways to make this time of year a little easier on the Chronically Ill. These are things we all may struggle with but we need to really focus on during the Holidays to help us make it through as healthy as possible. No one wants to be down and out while everyone else is celebrating. Personally I love a good hot bath with a good bath bomb. Or reading a good book or watching a movie and just relaxing with my heated blanket!!
May you all have a Happy Holiday Season and hopefully you will find these tips helpful.
Happy Holidays!
Amber