“It’s hard…it’s hard changing your life. It’s hard picking up the pieces and starting all over again. It’s hard getting your mind together after you’ve gone through a life shaking experience (being a primary caregiver for someone; hearing a diagnosis you didn’t want; starting over again from a loss of any kind; being alone in a new place; wanting a friend.) But you can do hard. You can weather the storm. You will come through this.
Affirm to yourself every day ~ several times a day. No matter how hard it gets…I’m going to make it!! Stand up inside yourself and look yourself in the eyes and say “I can do hard!!” Exercise, pray, seek solitude, allow for periods of sadness…but know that you will get through this. Keep the faith; continue to work; and expect to make it through. You may not be able to change your circumstances or situation…but, you can change yourself! Hold on! You can do hard! You have GREATNESS within you!” — Les Brown
The young woman, Hiliary Hoffner, pictured above, has the same rare life threatening condition that I have. We almost lost her a year ago. She was hospitalized for 4 1/2 months. She fought hard. She’s a warrior. Today she’s doing quite well, engaged to the man of her dreams planning a wonderful future together!
When you’re going through hard times, remember, this too shall pass!
As we kick off Vasculitis Awareness Month, I’d like to talk a little about invisible illnesses and disabilities, as vasculitis is a chronic illness which is most often invisible. And a lot of mystery and misconception surround invisible illnesses and disabilities.
People with ‘invisible illnesses’ don’t look sick or disabled.
Even cancer is often invisible these days. I’ve seen friends and family go through cancer without losing any hair or losing any weight – and they look just fine.
Those of us with serious illnesses are not always emaciated, gaunt, or pale. We often have all of our limbs, we’re not always in wheelchairs.
Sometimes we need wheelchairs and sometimes we don’t.
When we are lucky enough to walk, it’s often a great effort to do so – but we try really hard not to let the effort show.
We try hard not to let any of our struggles show which adds to the invisibility of our illnesses.
We try to hide our struggles because: A) we want to be “normal” and; B) we don’t want to be a burden.
Sometimes we’re missing vital organs but you would never know by looking at us.
For instance, I’m missing a lung and a large percentage of the population is missing a lung, making many simple tasks difficult for us.
Some have insufficient airways. I’m in that club as well.
Many have an invisible heart disease. Many others have only one kidney, or they’re waiting for a kidney.
On top of missing or damaged organs, we are most often afflicted with chronic pain, crushing fatigue, low energy, depleted stamina, and reduced vitality.
We need to pace ourselves. We need to rest. We need to use the handicap-designated parking spaces.
There are times I can’t walk across a parking lot and also walk through the store to do my shopping. Walking across a parking lot can trigger the same symptoms as running a race – leaving me extremely dizzy, sweaty, gasping for air, my heart pounding out of my chest, and exhausted. It often triggers an asthma attack. We need close parking.
Everything is an effort.E.v.e.r.y.t.h.i.n.g.
I often can’t grocery shop and cook in the same day. If I cook, forget about being able to clean up after. Just getting dressed or taking a shower can leave a serious/chronically ill person exhausted. The smallest task can be a huge undertaking for us at times – for some, it’s all the time.
I love to cook, but anymore, it has to be rather quick and simple, no more cooking big feasts. I lack the required energy and stamina. And cooking is often painful.
The struggle is profound.
Living with serious/chronic invisible illness symptoms and medication side effects takes a daily toll, draining our strength, stamina, vitality, overall health and well-being.
Medication side effects can be severe. They can even cause other diseases such as diabetes and osteoporosis. Even cancer.
“The person who takes medicine must recover twice, once from the disease, and once from the medicine.” – Sir William Osler
The struggle is real.
It’s like having the flu or a hangover or UTI that just never really completely goes away. Even on our good days, we are not up to par with the average healthy person of our age.
It’s often harrowing.
And you don’t usually see us on our bad days – those days when we have to cancel plans and stay home in bed, or on the sofa – or go to the ER/ED. These days can hit at anytime.
But what about remission?
Even in times of remission, we live with the permanent damage caused by active disease. When the disease is quiet, I still have only one lung and other internal damage. And if it’s a drug-induced remission, we live with the daily side effects of the medications.
Remission does not always mean symptom-free.
Most of us still have limitations during remission.
The word ‘remission’ isn’t always accurate and some doctors won’t even use the term to describe disease inactivity.
We still encounter bad days during remission.
Not everyone who looks healthy and able-bodied, is.
So when you see a “healthy-looking” person park in the handicap-spot, remember, they more than likely have an invisible illness/disability.