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

The Things We Should Never Take For Granted

Have you ever really stopped to think about all the things you do, places you go, activities you participate in on any given day or week?!? Okay so now you are thinking. Now make a list, list everything you do that takes physical ability, everything you do that, which allows you to have freedom (leaving the house on your own, whether it be on foot, on a bicycle or by car). And everything that requires mental capabilities! Now you think I’m crazy. But my point is that we do things all day that we take for granted. Things that not everyone have the ability or freedom to do.

All day, everyday we do things that we take for granted. We get out of bed and walk to the bathroom, we eat food, we have a normal conversation with our families and thousands of other tasks. Now think about how you would feel and what you would do if you were unable to do those things as easily as you do them now! What if you were no longer able to easily carry on a normal conversation, because your brain is “foggy” and your thoughts are easily jumbled? Which in turn causes people to start to question your mental capabilities. How would this make you feel? This is something we all take for granted! And I never thought about until I developed Lupus, Fibromyalgia and Migraines, all which can cause brain fog and make it hard for me to carry on a normal conversation at times. Due to those conditions I may randomly lose my train of thought mid sentence, or have no idea where I was going with what I was saying. This alone can effect my daily life. But also impacts my ability to work because employers want nurses who are on the ball mentally. Not one who is forgetful, and easily loses their train of thought.

What would you do if you lost your ability to drive? You no longer could just run out and jump in the car and run to the store or to grab food. How would this change your life? Well, let me tell you how it’s changed mine! Since I totaled my car in August & it is thought that seizures were the cause of the accident, I can’t drive again until I have been seizure free for 6 months. Never, until now, did I think about all the things I would just jump in the car and “run” to do. I can no longer take myself to the doctor, to the grocery story, the bank, to go grab some food, or even just to go for a drive to think!! This has had a major impact on my psyche. And caused some major depression and anxiety issues. It has also really made me question my self worth since i can’t drive a car, I can’t work outside the home and I’m living at my parents at the age of 32 due to lack of steady income. All of those are hard pills to swallow on their own, but combine them and times can be very difficult. Things get really hard when you are stuck staring at the same walls day in and day out! Just imagine one day you are a functioning member of society, working outside the home. Who is able to drive and go wherever whenever, to the next day having no car and not being able to drive at all. Definitely a major life change that is hard to accept and one you (or I ) never expected.

The things we take for granted don’t have to be as drastic as the things I’ve talked about so far. They can be something as simple as getting out of bed pain free. Most people wouldn’t even think about this. But those of us who deal with chronic pain never take a day when we can get out of bed pain free for granted. That is because the pain free days are so rare, that when we it happens we rejoice and enjoy it. Some people who battle chronic illness will even lose the ability to do the little things we have done by ourselves for years. Tasks like bathing, toileting or feeding themselves may no longer be possible. How would you feel if you had to suddenly rely on someone to help you bathe or change clothes or even help you get to the bathroom? Would this change the way you look at life? Would this change how you felt about your self worth? It certainly can. It’s hard at any age to ask for or accept help from others. But you get to a point when you have to. You don’t have a choice. No matter how awful it is and how bad it makes you feel sometimes you have to accept that you are no longer able to safely function by yourself.

A person never thinks about all the things we do in a day that we take advantage of, that is until they can no longer do those things.  We are just so used to running out and jumping in the car and running wherever errand or completing whatever task needs to be done. We don’t think about how lucky we are to be able to run to the store, to the gas station or to the pharmacy. Or have the ability to leave the house without someone with you. I guess the point I’m trying to get across with all of this is that we need to pay attention in life, and make sure that we are living each day to fullest and not taking anything for granted. We should be living our life knowing full well that tomorrow our lives could drastically change for the worst. And that we could lose the ability to do the things we take for granted on a daily basis!

With Love,

Amber