Will I ever?: A Spoonie’s Reality

“Will I ever?” is a question those living with chronic illnesses ask on an everyday basis. Quite honestly, we ask these questions more than once a day.

Will I ever wake up without some sort of pain?

Will I ever be able to go out with friends and family without taking 5 days to recuperate?

Will I ever stop feeling alone?

Will I ever lead a pretty normal life?

Will I ever have real relationships rather than have relationships due to pity?

Will I ever feel love without limitations from my disability?

Will I ever be able to carry and birth children of my own?

Will I ever be looked at any differently than a sick person; a Lupie or Spoonie?

Will I ever not be judged by my inability to do things others can?

Will I ever stop having these thoughts of being a burden to all around me?

Will I ever feel like myself again?

Will I ever be able to work again?

Will I ever be able to get up and go when I feel like it?

Will I ever stop seeing the hospital more than I see my family?

Will I ever be truly understood by persons that aren’t sick?

Will I ever be able to tell the whole truth about how bad I feel?

Will I ever be carefree?

Will I ever be well?

Will I ever…..

It is important for those around us to understand on top of fighting with all our might for our lives daily, we have to handle the internally daunting reality that in the current moment the answer to our question is NO!

Indulge me by putting yourself in my shoes for a moment and ask yourself each question listed above. Remember you are me and chronic illness is your reality. Can you honestly answer any question in this moment with a yes?????

Will I ever…

Power of Friendship

Friendship is exemplified in many ways, but what does true friendship look like for those living with a chronic illness?

It means someone who understands that you may not always call because you are fighting your ailments and have no energy to talk. It means someone who understands they may have to come to you because you aren’t physically able to come to them. It means someone who doesn’t get upset when you have to cancel plans because something health wise has come up. It means someone that doesn’t mind being in your presence while not saying anything at all. It means someone who helps you plan your day so you can reach your full potential. It means someone who appreciates how hard you fight, but tells you when you need to slow down. It means someone who will go to the high heavens to make sure you are okay. It means someone who’s humility outweighs their need to be the center of attention. It means someone who rides for you until the wheels fall off. It means someone who encourages you to live your best life and vows to live theirs with you. It means someone who sets all judgement aside, holds you accountable and loves you through wrong and right.

Not everyone around you is a true friend. This holds true for family members as well. When you find a true friend treasure them. Be all they are to you plus more! Love them on purpose and never let them go!!!

I am so thankful for my true friends and I ask God to bless them abundantly!!!

A special shout out to my true friend Tiara who brought me these goodies today (see pics below) I love you Tee and thank God for you!!!

What is wrong with me?

Hi! My name is Angel Williams and this is the story of my life!

I was 12 years old when my life drastically changed. After having mononucleosis (no I had not kissed anyone) I began to have bruising under my feet, body aches that felt like the flu and chronic fatigue. My mom took me to the Pediatrician who right away started testing me for any and everything. My antinuclear antibodies were positive meaning there was something autoimmune going on in my body. I was then sent to see a Hematologist, Rheumatologist, Oncologist, etc. and was tested for everything under the sun from AIDS to Cancer.

Finally after traveling to the University of Virginia Hospital, I was told I had what appeared to be “Something like Lupus.”

What did this even mean? Here I am 12 years old, reasonably healthy I thought yet getting a life changing diagnosis. Is there a cure? Will I die? What does having a chronic illness truly mean? The freedom to control my life was over. In the blink of an eye I felt my life was over. Taking my medicine was my first priority now and my childhood was gone.

I felt ashamed as if I had to hide because I was now sick. I just found out I had the cooties and I just knew no one would ever want to be around me again. Why was this happening to me? What did I do to deserve this? What is wrong with me?

Angel my dear, you have Lupus…