Living with Chronic Pain
October 13, 2016
Most people see me and don’t know the pain that I live with each day. I do my best to mask it, as I decided several years ago, to not broadcast to people, what I am dealing with on a daily basis. I don’t see how it benefits anybody if I let them know whether I am having a “good” day or a “bad” day, in regards to my pain levels. You see I have one of those “hidden” diseases. It began over 25 years ago, and it wasn’t until about 6 1/2 years ago, that I couldn’t take it anymore. Up until that point, if I had a bad day, I would call out of work and stay on a heating pad for a day or so. I have hereditary degenerative disk disease, that I didn’t do anything about until there was so much damage, that there were very few options left for me.
I know people don’t “see” my pain and I am thankful that they can’t feel it!! I am used to the “looks” at the grocery store when I have to ride the scooter, and when I park in a handicap spot. All people see is what they think is a healthy woman taking somebody’s handicap spot. They don’t understand that every step I take in a grocery store is painful. They don’t get that for me to go to a department store, like Kohl’s or JC Penney’s, it hurts to even carry my purse. I can remember over the summer , I had to go shopping to find my granddaughter a bathing suit, and she is at that tough age where she no longer wears a child’s size and yet the Junior size bathing suits are not appropriate for a 10 year old. As a result, trying to find her a bathing suit has been a challenge. I didn’t find what we needed in the 1st store I went to, and by the time I was halfway though the 2nd store, I had to find a spot to sit down and rest. That is what a normal trip to a department store looks like for me. If I go to do any grocery shopping, even though I use a scooter, I usually have to break it up into 2 days. I am not the type of person that goes to one store for all my groceries, so it generally takes me 2 days to get my shopping done. I can manage a trip to Krogers, and then maybe Sam’s Club. However, by the time I am at Sam’s I am riding the scooter. You would think that riding that, it would be an easier trip, but it isn’t. I can’t go by myself, because I can’t reach above my head, due to Frozen shoulders. (frozen shoulders are due to multiple neck surgeries and no movement of my arms for months on end) I have to admit though, when I do feel “froggy” , and go to the store by myself, I have become very resourceful. I rely on the kindness of strangers, to do things like, put a gallon of milk in my grocery cart, or get something from the higher shelf on the store. On days like that, I am very thankful I live in the South, where people are sweet and happy to help, most of the time.
To give you an idea of how I got in this position, 6 years ago I was told I needed to have 3 vertebrae in my neck fused together. I was told at the time , that the surgery was about a 50/50 chance of improving my pain levels and my abilities to be more active. I had no choice but to do the surgery, as I was told if I didn’t do it, I would eventually lose use of my hands and may not be able to walk. I was working full time at a job that I absolutely LOVED , and when I was told about the surgery, I was supposed to be able to return to work in 2-3 months. However, that isn’t how things worked out. Three months after my 1st surgery, my neurosurgeon told me I needed another more extensive surgery. The 2nd surgery , they fused more vertebrae in my neck and put in some hardware. They put in a titanium plate, 2 titanium rods and 6 screws. I always joke when I have to have any x-rays done, that I have a ton of hardware in there and I feel like the Tin Man in Wizard of Oz. Just oil me up and I will be good to go. I was in a hard collar brace for 6 months after that surgery, and was told at my follow up appointments, that I would never work again. I was devastated to say the least, as I was only 45 years old , and had no plans of retiring or being labeled as “disabled” for the rest of my life. I ended up with one more surgery, 6 months after the 2nd surgery. By the time they did that one, and I had gone in for all my after surgery appointments, I was told that basically they had done all they could do. I deal with nerve damage from the disks being fused together as well. My thoughts on that day was really? You have to be kidding….Now what? I was put under pain management, so that I could have some semblance of a life. I fought for about a year or more with depression, but eventually pulled out of it. I am thankful that I can walk, as a lot of people that have had the extent of work done that I have had done, are in a wheelchair.
I do want to mention, that I believe that God can work all things out for good. The good that has came out of this, was I was able to be home for my teenage daughter when she needed a mom at home. She was just hitting her horrible teen years, when all this happened, and I was no longer working all the time. I am thankful that I have been able to be at home, so that I could not only be there for her, but for my son and my oldest daughter. I have been able to help take care of my oldest daughters’ children, as she went through some really tough times the past several years. If I had still been working, I wouldn’t have been able to do that. I am able to go to my granddaughter’s school functions or softball games, or my son’s performances. Granted, I end up in bed for a day or so in extra pain when I do those things, but it is all worth it!!!
I know this has been a really long post, but I wanted to give some insight as to what it is like to live with Chronic Pain on a daily basis. The next time you see somebody get out of their car , and they have parked in a handicap spot, just remember there are diseases that affect people , that aren’t visible to you. I am not saying that there aren’t those out there who abuse that situation and take advantage of a handicap spot they shouldn’t have or don’t need, because I know there are!! I just want to point out that there are a ton of “invisible” diseases. Over the past several years I have made some good friends, that also suffer from Chronic pain and I believe it is one of the most misunderstood diseases out there.
Thanks for taking the time to read my post today! I would love to hear from you below in comments if you suffer from any number of reasons there are for Chronic Pain or have a loved one who does. There are more than I can list here, so I will just leave that up to you. Let’s share with each other, learn from each other and lift one another up!!
Very well written. So sorry you have to deal with this day to day! Prayers for ya honey!
I deal with similar issues, I also have degenerate disk diseases in my neck and lower back. Have had 2 neck surgerys.broken pelvis in 4 places hardware in both and fight back pain everyday. I totally understand where you are coming from. I am heading to see neuro surgeon in next couple weeks to see about back surgery. I hate pain today is bad can hardly walk. I have no one who understands except hubby. God is good and I rely on Him in all things.
Get in touch anytime to talk. Thanks for the great post.
I live with Chronic Pain daily too .. .as does my nine year old. It is something no one should have to do. I so wish there were cures! HUGS!
Thank you for taking the time to read. I will keep you in prayer with the Neuro visit, and any potential surgeries.
Thank you Bobbie!! Big hugs back at you!
Oh no!! No baby should have to deal with Chronic Pain…so sorry to hear! Thank you for taking the time to read, and I couldn’t agree more, I wish there was a cure! Hugs back!
Thank you Bobbie!! Big hugs back and of course, thank you for taking the time to read!!
Living with chronic pain is a nightmare. Luckily I don’t experience it, but my sister who lives with me does. I see her struggle every day just to be mobile. Most people that see you have no idea what you are going through because you learn to mask it so well. I really hope there is an answer for you Sandy and you can become pain free again.