The start of the journey

I became an amputee due to an illness. Not from a auto accident, not from a war, not from a workplace accident.

I didn’t wake up to find my limbs gone. I woke from a coma to find my dominate hand and my feet lifeless. I had hopes that they might heal, and it was nearly a month from my waking point to amputations. I knew a week ahead of time that the limbs would be gone. I think it might have been better if I awoke to them already gone, as the simple fact that I knew the surgery was coming was dreadful!

However you came to be a new amputee, you are one now. First, let me say I am sorry this happened, and that you will get tired of hearing those two words… “Im sorry.”

You will grieve the loss. I did, and still do at times. Even at this late date in my recovery, i still sometimes say “I cant believe I lost my legs!” I think this is normal. Just don’t dwell on it.

As a new amputee, still in recovery at the hospital, you are going to learn to hate your OT and PT therapists. I was on a strict regimen of workout and therapy, not two days after surgery! I would cry when they came to get me, because I didn’t want to go. I wanted to lay in a ball and wallow in self pity, but I went.

I laid on the therapy table working my tortured residual limbs up and down, side to side, all with tears streaming down my face. If this happens to you, don’t be ashamed, don’t feel awful about it. Trust me, your therapist has seen it before. Let it out.

I said ugly things to my therapists, I am sure, but they have seen that before, as well. Just remember, they are there to help you. You are going to be weak, your resi limbs are not going to feel right, and it will be a bit of a torture. It WILL get better.

You only have two options for therapy, go willingly, or go unwillingly. If you refuse to often, they will get the hint, and maybe send you home. This is not the option you want.

As a new amputee, if lower limb, everything is going to be new. Your balance is going to be off. I had to learn to sit on the edge of the bed again, losing twenty pounds of bone and muscle from the bottom of your legs gives you a new center of balance, and it is weird. Your therapists will help you, I promise.

I want to talk for just a minute about post op pain. You are going to have some. You will get pain meds, just don’t become dependent on them. That is a life you don’t want, fighting to live again while fighting an addiction. I used them only when necessary. If you have undue pain, talk to your doctor, or one of his team. They should be visiting you regularly. I had horrible pain in my right resi-limb, and it turned out to be a hematoma. I had to go back into surgery to get it taken care of. don’t ignore pain, there could be something going on that needs to be corrected.

I know you feel like hell, your life seems over, and you hate yourself right now. don’t let that spill over into your hospital care staff. The nurses, CNA’s, doctors and interns are there to help you. They don’t need to be cursed at or verbally abused. Trust me, if you make a nurse cry, (which I did once) you will regret it. You will feel like a complete ass.

If you are on a therapy ward, trust me, they don’t see amputees very often. I was on the best therapy ward in my state, and there was only three amputees there, including me. Tell them what hurts, what doesn’t feel right, but don’t abuse them. They are probably learning about amputee are just as you are. Also, you draw more flies with honey than vinegar. If you have a craving for ice cream at three AM, your aide is more than likely going to put a rush on that button push request if you are a good patient.

When simply wrapping a bandage on your resi-limbs can be awkward and painful, your care staff feels that pain with you. Even if you screamed in agony, when they are done, tell them thank you, and that they did a good job. Trust me, as a long time EMT in the health care field, I know from personal experience a thank you and good job are rarely heard. Thank them for their service, even if you are miserable.

This will go a long way towards the recovery of your mind, as well. If you sulk and give others misery, you will take a much longer time to recover inside your head. Acting like a human being reminds you that you are one.

In my next post I am going to delve into the thought I had in my head after surgery, and how I felt about the world, my life, and my family. How I felt about ME, as a person. I hope my thoughts here will help you on your journey, and will help you walk the road you have been given.

One Reply to “The start of the journey”

  1. Hey, Neil. Remember me, from the amputee meeting at Lourdes? I am so glad u came…I learned a lot from u. I LOVE ur website and ur blog posts are so helpful, educational and inspiring to me…and I went thru a lot of rhw same emotions and problems as u did. I feel so fortunate I still have one good leg and all my fingers. Sometimes we takeout lives…and body parts for granted. I know I did. I never imagined at 30 years old that I would be having my right leg amputated. I am still coming to terms wwith it and trying to love and accept the new me, butt it isn’t easy. I face new challenges everyday. I have even been speaking g with a therapist on a regular basis at Four Rivers Behavioral Health, just to blow off some steam, cry, or vent a little. My depression has gotten worse and I stay angry and bitter a lot. I also think I am suffering from Post Traumatic Stress Disorder. Plus, I am anxious and stresswd most of thw time and suffer from horrid panic attacks…and even really bad dreams and nightmares. I have trouble ssleeping and can only sleep at night with the help of ambien and a Xanax. I have horrible phantom pains, and sometimes muscle spasms and jumpy nerves in my residual limb. It was so great meeting u and I hope u will come to our next meeting. Contact me by Facebook, if u will. I never check my Yahoo email anymore. Jennifer J. Karnes, 30 year old from Paducah, KY…That’s me. I was gonna try to find u on FB, but didn’t know uur last name. Thanks for all the advice and telling me ur story and ur experiences…it means a lot.
    -Jen

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