Monday, 12 May 2014

Guest post from Holly - My Daughter and ME

Image by Wendy Boutilier

Yesterday I took my child for her 2 year check-up. She is growing and happy! I saw a woman there for her first wellness post-hospital check, at least from the looks of her tiny baby and the tell-tale slow and painful walk it appeared she had just had a baby. (I remember moving like that - like you either pushed a bowling ball out or had a bowling ball cut out of you!)

On the way home, I was thinking about the contrast of where I was two years ago when I was there for the first after hospital visit and this visit. Not just the differences in my daughter but the differences in my health.

I slowly and painfully walked into the clinic about 4 and a half days after an emergency c-section. I was definitely overwhelmed. I had this amazing and tiny baby (4lbs 9oz that day) to care for. All those oh-so-fun postpartum things were going on in my body. I have this chronic illness, myalgic encephalomyelitis (ME), and I had no clue how my body was going to respond to all of this.

During the years leading to my pregnancy I was only able to leave the house about twice a month for the most part. Most of my days I was spending 23 hours in bed. I would have a good day or a set of good days and then would crash again back to my normal 23 hours stuck in bed. I wish these hours had been relaxing and reading and recovering. These hours were spent surviving. Pain, headaches, nausea, dizziness, sore throat, brain fog, IBS, weakness, post-exertional malaise, extreme muscle cramping are some of the symptoms I was fighting. I can hardly explain what it feels like. I would say it was hell but God was always with me .  I also have an amazing husband who sat with me and took care of our home and drove me to the doctor. He also made me laugh and helped me find joy in little things and tailored his vacation time to do things I could enjoy too.

Just because my body was in misery did not mean my soul was. I treasure the times I had with my husband during those years. I am awed by his patience. I have family who saw me suffer. They stayed with me while I was in the hospital. They took care of me before I was married. They encouraged me and gave me security when I suddenly had to leave college and quit work. They have remained a steadfast support for me. I know I can call on them for help when needed. I am blessed. I do not know how people face this illness without these buffers.

All of that to explain that I began to feel somewhat better towards the end of my pregnancy. The first five months were rough to say the least. Some people with my illness feel better during pregnancy but get worse again after having the baby. I had no clue what to expect. I just prayed and had to believe it would work out even if that meant that I would heavily depend on others to help care for my child. However, so far I have remained somewhat better. After the first year, I was able to start researching my illness a lot more. I have slowly discovered some things that help me function better and my health has improved a little more.

I am still sick every single day. Each day presents struggles but it also has joy, fun, and most of all hope. Most days I take care of my child all day. I can now cook. It has to be simple meals and my husband has to do all the clean up and some prep work. but I can prepare supper for my family several days a week. Before I could rarely cook. To me doing these everyday tasks is nothing short of a miracle.

I am writing all of this because today, May 12th, is ME awareness day. This has become very important to me. Before I had my child my awareness efforts were minimal. I like privacy. I don't like to draw attention to myself . It makes raising awareness difficult. However I think most of you would understand how fierce a mother can become when she feels she needs to protect her child. I want my child to have as healthy a mother as possible but she is also at greater risk of this illness because of genetics. I will kick this illness's butt in advance to protect my child if it is at all possible. 

For those of you who pray, please pray my child never has to experience any of this. For everyone, please take a moment to learn more about this illness and share that knowledge. Help me make a difference. Help us find a cure so no one else has to go through this wretched disease. 

Throughout the day on May 12th you will see lots of blog posts and #MEawareness messages. I ask you take a few moments to read them. Maybe even pass some of the information on.  Other useful tags include  #May12BlogBomb #May12th  and #RespectME.

by Holly 
for #May12BlogBomb

1 comment:

  1. What an amazing story. You are such a strong woman, and your child will in turn grow into a strong adult with you as a great role model. Wishing you the very best.