How do they do It?
When I was first diagnosed with Lyme Disease and sitting on the couch everyday it seemed with a young child running circles around me, I started to ask myself how do other people with severe chronic conditions do it? How do they still live their lives? How do they have a life in the first place? I admire Stephen Hawkings, Michael J. Fox, etc. people who have chronic conditions that will never go away. I liked the title "Incurable Optimist" which is one of Mr. Fox's books. It made me think even more how on earth do you stay optimistic when you are vomiting all day long with a young child and no one to help.
Almost two years ago, I had one of my worst days ever with Lyme Disease. It was spring time when I woke up feeling sick to my stomach. I kept thinking if I just take my pills and eat a little bit. My stomach would settle down. Within an hour I was vomiting and I did not stop for a couple of hours. I ended up vomiting up to 10 times that day. I was shaking from dehydration and doing everything I could to stay out of the emergency room. We didn't need more medical bills. I kept sipping water but nothing helped. I was now throwing up clear liquid by this time. I knew it was time to go to the emergency room when I was on the floor near the toilet and my son came in and saw me crying out of utter frustration. It was time to go whether I liked it or not. My husband called into his job and dropped me off at the hospital and took care of our son. I didn't want my son to see me with needles coming out of me and so ill. I was so pale and exhausted. I thought I was a failure. I should of been able to "suck it up" and keep going without help. I hated the ER anyways. They didn't exactly believe Late Stage Lyme Disease existed. They gave me Zofran for the vomiting and fluids. That was all they could do.
So in reflection of this horrible day, in the life of someone with a chronic illness. How on earth do you stay positive when you are feeling so sick. I don't have any perfect solutions. When I am really sick I try to go with the flow the best I can, get help, rest and find ways to keep my son entertained the best I can. I am much healthier than those days of vomiting and I have a Naturopathic Doctor that can subscribe the Zofran (anti-nausea) medication, my primary doctor could not. So now I keep it on hand and when I get severe migraines and feel that nausea coming I take the Zofran before I start getting to that point of vomiting. I have been able to gain weight and keep it because I am stopping the nausea and vomiting right away. I have been under weight so long that this is a very big deal. It has taken me a year of a Celiac diet to even gain 5 pounds. I didn't think it would take that long. In the end bad days are not fun and I don't believe in belittling the emotions that I feel when they happen except limiting my temper towards my family the best I can. When the good days are around I hold onto them, I try to live in the moment and see the world outside my little bubble. Now that I have more good days than bad its easier to relax and enjoy life. Severe chronic symptoms really test your inner core stealing away your hope, dreams, happiness, and that special inner spark. Its up to us to defend our core. No one else can. Blogging, writing, poetry, photography, smiling at silly things, time with friends and family, cuddling with my cats and son, watching my son be himself always puts a smile on my face. I've had to learn how to ask for what I need instead of acting like I am okay. My husband, God Bless him, always knows when I am trying to just get through. I start to suck down the pain and keep moving forward, problem with that method is it makes me very angry, ugly, and testy. I don't recommend it. Coming up with some last minute plan of some sort does relieve some of my tension. I have learned to keep meds on hand that deal with flares of severe symptoms. And I work with my ND to prevent future system outbursts. Sometimes I think my body is a piece of broken down machinery. I wish there was a quick "body" shop that was nearby that would be nice.
Hang in there my friends, this is a journey and it has bend and twists, bumps, and rises, sunsets, and storms. Holding each others hands as we walk down the road together is the only way we can keep the optimism alive.
That is a tough question with no perfect answer. I remember struggling with my child and Lyme. I felt guilty not being able to play with her. During times like that I questioned my faith and decided Jesus is all I have to cling to. I was then blessed with people who were willing to help me and I was low enough to let them do it. I could not have made it without the help and the scripture that was etched in my brain. See, not really an answer. Just what happened with me.
ReplyDeleteI wish there was a magic pill. It seems each one of us finds our own unique way of getting through the tough times. Each persons story is valuable and amazing.
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