and eight years later, my nerves are shot and my baby is gone.
Neuropathy is off the charts and I am having a freak out.
I decided today would be the day to tell you all a little about daily life with my injuries. Please keep in mind as you read this that before I delivered Matthew, I was fine. He was fine. We were both alive and healthy.
He died. I almost didn't make it.
My body has suffered extreme consequences of a uterine rupture and my son suffered the ultimate, death.
July 2, 2005, was the last time I felt my lower extremities from the base of my spinal cord all the way down to my feet.
It's all gone. Total sensory loss.
My mind never gets a break from the neuropathy. I have a break from chronic pain, but the neuropathy is there, always. My mind is always recycling the chain of events that led to the injuries I suffer with.
I wake up usually around 3 or 4 a.m. with my feet and legs on fire. I get up and I will try and get my circulation going as I silently scream with agony. It is really agony. For hours I lay there, sometimes I will get on my Pilates machine and just keep my feet and legs propped up hoping that the blood flow will take the burning pain down a notch or two. I do anything I can to help rest my body. I usually don't get back to sleep after this. And if I do, it is just in time for the alarm to wake everyone up. It's exhausting.
Mentally exhausting as well as physically.
I cannot disassociate the agony of this physical and nerve pain from my son's death. No matter how I try to categorize it. I have had nearly eight years of practicing and it sucks. Sorry, I couldn't think of a better word.
The best part of my day is mid morning, so I try and get as much done as I can. As the day goes on, the neuropathy heats up. I cannot sit down, I have to sit at an angle or lay flat on my stomach to try and keep the pressure off of my lower back.
The burning never stops. Never.
The pressure at the base of my spine is ridiculous. The more pressure on the base of my spine, the worse the neuropathy becomes. I try to change positions as often as I can, to stay as comfortable as I can, but I am in no means going to sugar coat it. I am really never comfortable unless I am asleep, sound asleep.
Early afternoon, if I am driving, even for a short distance, my nerves are easily agitated. Thus making me agitated. It is terrible! I cannot stand the way I begin to feel around the evening time. My nerves, all of them, are short circuited and leave me really begging God to help me.
I don't share this for anyone to feel sorry for me, so please don't. I share this because this is part of my life. This is part of my loss. This is me without Matthew.
I don't have the liberty of doing what I want when I want, I have to make sure my downstairs departments will agree with what is on the agenda for the day and I have to make special arrangements to do so. There is always something that can trigger the neuroapthy, my neurogenic bowel or bladder and it is difficult to live like this. But I am living! And I am grateful! Even though it may sound like I am not in this post, but I promise I am! So grateful!
I shouldn't be living after the trauma I went through, but God kept me here for a reason. I am looking for those reasons daily.
The most difficult is to keep my composure when I have tasks to do and I try my very best to make that happen. I suffer silently with this and I am just not going to do so anymore.
SO now that you know neuropathy is my companion, it takes a seat right next to grief over losing my son. I am sad that my life is this. Life is without my son and life is with injuries that cause me extreme pain and neuropathy and a whole plethora of problems that come along with it.
At night, I take a bath, RW rubs my legs and feet with my Arbonne oils and then I put my grandmaw compression hose on as I finish my nightly mama duties.
I suffer silently so they will not see the pain that radiates in my body although they know, they really, really know. They can see it.
I tuck my kids in and say prayers and then hit my pillow and beg sweet Jesus to take it all away.
Sometimes I am just so exhausted I fall asleep without help and sometimes I have help. This too, I have learned to do for my sanity. This is part of accepting my life, my loss and what is in store for my future. I pray for a miracle. I pray for peace within my body but mostly in my mind. This is where it gets complicated.
I miss my son. I miss my health. I miss what it feels like to be free of neuropathy and the injuries that I live with. I miss that terribly.
If you know anyone that suffers with a chronic illness, please be gentle when you just don't understand why they snap over nothing. That nothing may be the loss of a child that scarred their hearts and their bodies for life.
One of the closest diagnosis that I received from one of my doctors was Posterior Cord Syndrome. As I researched this I was blown away at the similarities with my symptoms. My injuries are more extreme but this is as close as they have ever been able to diagnose me. I appreciate the work my doctors have done through the years to help me live better...
Through surgeries, tests, procedures and much more, I have been able to have a better quality of life. They just cannot seem to stop the migration of the injuries from progressing.
I cannot look to the future for that will fill me full of fear. So I take one moment at a time. So far, I have made it through some really rough moments today, and I am thankful for that. Now I move on to the next moment. I sit here with my granny socks on waiting to start the night thing all over again, praying with all of my heart for a peaceful night of rest and sleep.
I close today, grateful for breath, grateful that I am going to be in heaven one day with Matthew and and no neuropathy! I know that! That gives me great hope...
I am grateful God gives me the strength to be the mama to Nathan and Will that I need to be. I am so grateful for that.
I am not sure what tomorrow holds and to be honest, tonight it would freak me out to think about it. I have survived another day without Matthew and another day with extreme neuropathy and disabilities. That is an accomplishment for me. And I will leave it at that. I will try again tomorrow.
Thank you for letting me vent and share this part of my life, who I am, after loss.
If any of you can relate to this, I am so sorry! Big hugs and prayers to you all!