I have been dizzy every day since March 2016. Some days are more tolerable then others. I have VM, there is no cure for it nor is there a real treatment. I’ve gotten to the point to where I have accepted and managed dizzy into my daily routine, but every once in awhile I think how nice it would be to wake up normal. I then start to realize how blessed I am that I do not have a life threatening illness and how many doors my Vestibular disability has opened for me that I never assumed would be there otherwise (I was on a long road of Bartending which I loved). That is when I go back to embracing my world as it is and as I’ve grown to love it.
I learned during the course of the last year and a half that embracing our current situations is the best way to handle life’s curve-balls. These situations, life’s moments and circumstances, will happen whether we dig our heels in and struggle against them or simply breathe and work with the situation. I struggled. When I initially left work and had to come home I struggled a lot, and then I started embracing my situation and let the doors that the Universe laid out for me open up. My art was in front of me to be painted , created and embraced. Now I have amazing people that are letting me share my art with them. I get to tutor art to young children and hopefully soon also to some adults. And I have a job I enjoy when all the while it looked like I truly wouldn’t be working again outside the house and I know many with this conditions similar to this that do not work.
There are days I wish I could sleep properly (like you know those normal 7-8 hours we are told about, it’s like a mythical Unicorn it seems) but then I remember that at least I do get some sleep. I refuse to allow my VM to take over so I suck it up and do what I have to. Some days I am extra quiet and the people around me ask if I am okay. I nod and say yes, but often I am staring at random objects to allow my eyes to focus again when I’ve over-extended and moved too quick (I still do this, even though I know that I have to move certain ways) . Or trying to contain the nausea feeling I have at that moment, which seems to be a constant by product that you do get used to.
The point of this story is that sometimes we are the only ones who can truly understand what we are going through and we either allow our misery to take over and blame the world for our problems or we take charge and make our lives amazing… Our lives are in our hands. Not your spouse, not your friends … your life is yours. So even with an illness there is small ways that you can make your life better. There was months were I couldn’t get too far from my couch. In that time I learned to embrace my Art & myself again.
So don’t fault others for not understanding your situation or circumstances. Their unkind words at your invisible illness or them not reaching out is not always because they don’t care but most often because life is busy for them too or maybe they simply don’t know what to say or how to help.
For those of you that don’t suffer from chronic illnesses though, if you have a loved one that does, when they are struggling, sometimes all we want is just to be hugged and then there is other days where being left alone so we can rest is the best medicine. Simply asking what we need also may help depending on the person.
The five caregiver commandments:
1. Accept your powerlessness.
Watching a loved one in pain is one of the hardest things in the world. It can feel like being trapped in a nightmare. You want to make them to feel better, but you just can’t.
There are many ways to support your loved one, but you need to understand that you are powerless to make them better. It’s not your job to take away their pain. You need to acknowledge this, and truly accept it, before you will ever be able to make difference for them.
Your love and understanding is the medicine they need.
2. Take time to learn about their illness.
The first step towards understanding is taking the time to learn about their illness. At the very least, learn the basics. What are the symptoms? What are the treatments? It can be helpful to read the experiences of others.
You won’t be able to make them better, but it’s an empowering step. Having an intellectual understanding goes a long way towards providing effective care. It opens the door to empathy.
Talk to your loved one. Ask them about their experience. Ask them questions if you don’t understand, don’t just guess. It may be hard for them to articulate the answers, but be patient. Really try to understand. Try to put yourself in their shoes.
What might your life look like if the same limitations were suddenly placed on you?
The better you can understand their illness, the better off you’ll be. The love and support you give will be authentic in their eyes.
I also recommend reading “The Spoon Theory” by Christine Miserandino at butyoudontlooksick.com. It’s a fantastic article and the most elegant description of what it’s like to live with a chronic illness I have ever come across.
3. Be with them, but give them space when they need it.1
One of the best ways to support someone with a chronic illness is to just simply be with them.
Living with a chronic illness can be incredibly lonely. It’s easy to feel disconnected from the world when you are so severely limited. It can be hard to relate to everyone else.
One of the things your loved one needs from you the most is companionship. Never underestimate the power of spending quality time with someone you care about when they are in pain.
Sometimes, just knowing we are not alone in our moment of pain is enough to carry us through.
But the reverse is also true. There will be times when the best thing you can do is to give your loved one space. Getting enough sleep and rest is a critical part of managing a chronic illness. There will be times when your loved one needs you, but there will also be times when they need to be alone.
If they don’t have the energy to spend time with you, never hold it against them. It’s not a reflection of some hidden resentment they harbor. In fact, it’s not personal at all. No one would rather stay home in bed. But when you have a chronic illness, you’re forced to make hard choices, and it’s so much harder when you feel like you’ve let someone down that you care about.
By giving them space, and not taking it personally, you are supporting them more than you can possibly know.
4. Validate their pain.
At the end of the day, what most people with a chronic illness so desperately seek is to be heard, to be understood, to be accepted, but above all else, to be validated.
Your loved one lives in a reality where almost no one truly understands what they’re going through. When they’re in pain, most people won’t believe them or even care enough to try. But you can be the one who understands. You can be the one who believes. You can’t make them feel better, but you can make them feel heard. Show them you know their pain is real.
By far, this is the most powerful way you can give your love and support. When they feel neglected by the world, a compassionate validation can give them the strength they need to persevere. In that moment, it can change everything for them.
5. Don’t get frustrated.
The worst part of a chronic illness is usually not the illness. Everyone gets sick from time to time. It’s the never ending repetitive nature that makes it so hard. We get sick. Then we get sick again.
At times, it will get frustrating, but it’s so important to remain calm. When your loved one is in pain, they will be at the mercy of forces outside of their control. They may be emotionally needy, distant, angry or sad.
Regardless, it’s safe to say that the interaction may not be as rational as you would expect under normal circumstances. And it’s easy to lose your cool when your good intentions are met with a reaction you didn’t expect. Pain can bring out our worst qualities.
But if you can stay calm and keep a cool head, the tension will always pass. You will be supporting them in a way that will make their pain easier to endure. At the very least, it will give them one less thing to worry about.
It can be difficult to support your loved one in this way, but it’s worth the effort.
Remember Happiness is something we choose. We don’t have to choose to be miserable. So even in the toughest situations, we can choose to be peaceful and happy, it allows us to find solutions and the doors available to us because sometimes life’s doors do close.
Pixie ~ Beatrice