Suffering With Chronic Pain

Most people don’t understand chronic pain and how it affects a person’s life. They will never understand until it happens to them. I don’t wish that on anyone! Most chronic pain sufferers have at least one well-meaning friend who is always trying to find a cure for their ailment or pain. The effort is much appreciated but it’s all in vain. Most of us with chronic pain have tried just about everything…because…do you think we WANT to live with debilitating pain? Of course we don’t! We have tried almost everything we can to make our lives more bearable, to no avail.

I have Osteoarthritis and Degenerative Bone Disease, specifically in my knees. I am in Stage 4, which results in the loss of cartilage in the joint. There is NO CURE, only treatments to manage the symptoms. The bone-on-bone friction associated with this can cause severe symptoms, such as:

  1. Swelling/Inflammation – Synovial fluid can increase, which normally helps reduce friction with movement but large amounts can cause swelling in the joint. Fragments of broken cartilage can cause increased swelling and pain.
  2. Severe Pain – Pain during movement, and during rest and sleep. By the end of the day, after use of the joints, more swelling occurs and pain is increased.
  3. Decreased Range of Motion – Movements are slow, with stiffness and pain making it hard to enjoy daily activities.
  4. Joint Instability – The joints become less stable; knees can “lock up” or just plain give out, which can result in a fall or injury.
  5. Weakened Muscles – As joints continue to wear down the muscles become weaker, bone spurs can develop and bone deformity can occur. (My legs are bowed, more so the left.) With weakened muscles also comes an increased risk of falls.

Some of the words I have used to describe my pain are sharp, gnawing, throbbing, stabbing, burning, excruciating, grinding, locking, stiffness, dull, tightening, and debilitating. Sounds fun, ‘eh?

This disease causes severe pain but also affects your life in other ways:

  1. Sleep Disturbances – Interferes with restorative sleep. It’s difficult to find a comfortable position, and it’s painful to even move.
  2. Weight Gain – With chronic pain, you tend to move less so it’s easier to put on extra weight. Pain makes it difficult to exercise or just have an active life.
  3. Anxiety and Depression – With chronic pain you tend to have difficulties performing normal everyday tasks like cleaning and laundry, showering, dressing, grocery shopping, walking, reaching, cooking, stairs, standing in lines, and much more. These are things we take for granted when we’re physically able; we don’t even think twice when doing them. When those simple little tasks become a struggle, it has a negative effect on our mental health. Enter depression and anxiety. It’s all so exhausting!

So, I guess I’m just trying to help others understand the struggle of living with a debilitating disease and chronic pain. Everyone’s struggle might be different but we are all the same. We are suffering, even if we don’t show it on the outside. We try to hide it from others. We try to be “normal” like everyone else. Some days we try. Sometimes we succeed. Sometimes we fail.

Some days, we just CAN’T. 

Sleep Eludes Me

5am. I’m up. I can’t say that I’ve awakened because I never went to sleep.

It’s bad enough I have chronic pain that keeps me from doing the things I have enjoyed all of my life. To grieve that loss is depressing but to now have restful slumber taken away is almost unbearable. My only solace is that I can take a 2 or 3-hour nap this afternoon.

It’s getting old. Night after night. I go to bed when I’m sleepy. Some nights I’m sleepy at midnight, some nights it doesn’t come until 1 or 2am. I STILL toss and turn (not really, mobility issues and all) until nearly 5am before I fall asleep. Not this morning. I was so sick and tired of lying there, not sleeping… I just threw the covers back and got out of bed.

I have tried over-the-counter sleep aids, teas specifically for sleep, breathing exercises and meditation, and multiple other little things to help me get my restful night. Nothing seems to freakin’ help. My body and mind alike need to rest!

My therapist says that during our lifetime, our sleep patterns change and perhaps we won’t always need 8 hours of sleep each night. I can accept that. I would be happy with just 5 hours of restful and restorative sleep, but to not have any sleep at all? It’s just nuts.

My days are long and boring the way it is since I can’t do the things I’d really like to do. I’m in pain and pain is exhausting! Sleep has always been my refuge. When asleep, I didn’t have to think about the pain. There was no depression. Sleep was an escape from the reality of my life.

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What do you do when you can’t sleep?

 

Hope, In Times of Darkness

Some time ago, I had gone through something that nearly pushed me over the edge. It was something that I never expected, nor had any idea how to deal with. Someone very close to my heart made some bad decisions and threw her own life into a chaotic whirlpool, at the same time turning my life upside down. This post is not about that person or the events that took place but rather the effect it had on me and my own life.

I had never in my life been so depressed. Not many people knew, just family and very close friends. I couldn’t talk about it without crying. I couldn’t go anywhere without crying. I couldn’t think straight. I couldn’t focus. I wasn’t able to sleep. I couldn’t eat. I was up at 5am every morning and didn’t go to bed until 1am. I was in a daze. I was barely living, just going through the motions. I felt dead inside. I felt lost. I felt shame and guilt, and I couldn’t pull myself out of this deep abyss I had been thrown into. I wasn’t suicidal, but I remember thinking it wouldn’t be a bad thing if I just fell over dead.

Now, don’t get me wrong. The events that took place had absolutely nothing to do with me, but when bad things happen to someone you love dearly, it will do things to you that you never thought possible. It didn’t help that “certain people” insinuated that I did something wrong. I was treated as if I did do something wrong. It wasn’t my fault. I didn’t do anything wrong. It was not my actions that caused the events.

I carried guilt and shame for a few years. I was depressed and saw no end in sight. I had never even considered seeing a therapist. I mean, that’s what family and friends are for right? You have a problem, you talk it out with someone you know and trust. Right? Well, when I was referred to a specific therapist, I thought, “How am I suppose to talk to someone I don’t even know, about these things?” Also, “How can I trust a total stranger with my innermost, deepest feelings?” I knew I had to do something so I made the appointment.

Never in a million years did I think I would be seeing a therapist! I cannot tell you how much it helped me to talk to someone unbiased, someone who was not there to judge or tell me how to feel. It was a slow process. It took an entire year to get in a better place. I saw light, after a long time of being in such a dark place!

My therapist helped me realize that the events that took place were not my fault. My head knew this, but my heart didn’t. She helped me to understand that the shame I carried was not mine to carry. I didn’t do anything wrong and now I could stand tall in my words with “certain people” who insinuated otherwise. My therapist gave me the tools I needed to set boundaries, and walk my own truth. She pretty much gave me the strength to go public with my blog not too long ago. I still see my therapist at least once a month. I used to see her weekly, but she still helps me and I don’t see an end to my visits with her anytime soon.

I guess my point in writing this is just to let others know that there IS light at the end of the tunnel. If you’re depressed, please reach out for help. I know that’s hard as hell, but others may not reach out to you. They may want to help but may not know how or even what to say. They may keep their distance because it’s uncomfortable for them. People just don’t know what to do to help. If you have the opportunity, see a therapist. If you don’t feel comfortable with one then find another. If you can’t do that, then find someone who will listen, not judge, and try to help you find a solution. Please, please, please do whatever you can to help yourself. YOU are important!

There’s hope in times of darkness. You just may have to look a little harder to find it. Just please look and keep looking until you find it.

 

Ba Hum Bug or Why I Hate The Holidays

I used to love this time of year! When my kids were little, Christmas was a blast! We always decorated the house and put up a tree. We had certain traditions that we carried on through the years; new traditions and old traditions from when I was a child. We made cookies and popcorn cake. We made handmade pizza on Christmas Eve and watched Christmas movies like Chevy Chase in National Lampoon’s Christmas Vacation and the original Grinch That Stole Christmas and others. We always had a little talk about what Christmas was all about and we watched a little movie about Jesus. Seeing the excitement on the kids’ faces as Christmas approached was amazing which made up for the work and stress of preparing for this special day!

As the years went by, the holidays became more stressful and less fun because the kids were older and you know how hard it is to shop for teenagers! They are very hard to please at times and it was so stressful trying to make things special for them. They were never, EVER, ungrateful but things just weren’t the same as when they were small.

After the kids left home and started giving me grandchildren, I started getting excited again about the holidays. But things went sour after only a couple Christmases and well, I won’t go into that because it’s still very raw. I got 2 Christmases with grandson #1 and now I rarely see him. I don’t even have a relationship with him. I’m not treated as family but more of an outsider. I got a few Christmases with granddaughter, but now she is being raised as a Jehovah’s Witness, which means no more holidays with her. (For the record, I don’t have a problem with JW specifically.) I do have a relationship with my granddaughter, though. She’s my sweetheart and we are very close. Grandson #3 is out of state with his mother. I can understand no holidays with him because kids and their parents move out of state all the time. I have to say I feel robbed not being able to celebrate holidays with the other 2 grandkids since they are both just 30 minutes away.

I haven’t put up a tree in probably 6 years. What’s the point? It’s just my dad and I and maybe my son for a short time. I always buy a few gifts but it’s just not the same without the kids and grandkids. It’s depressing and I just want to crawl in a hole until it’s all over and the new year starts. You may be thinking I should put up a tree anyway because it might make me feel better. Well, maybe. But maybe it will make the depression worse. I don’t know. Besides, I am disabled and I just can’t be doing that kind of thing anymore.

Anyway, I just grin and bear it and wait for it to pass….with a little help from my therapist and Captain Morgan.

Ba-Hum-Bug and cheers!

 

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                           Photo Courtesy of Captain Morgan

 

It Never Fails

So, if you read last night’s post you know that I had an appointment for Gel-One injections in my knees. The last injections (Synvisc-One) didn’t help but for just a few short hours. I thought I’d try the Gel-One this time. I was hoping for the best but was keeping my hopeful thoughts stifled because I have learned in the past to not get my hopes up too high.

Well, I was right to not get my hopes up. After receiving not one, but two automated reminder calls for 2 days prior, which asked me to “press 1 to confirm your appointment” and being told to “please come 20 minutes early,” I hobbled into the Ortho building. I hoped I wouldn’t be waiting for over an hour like the last time before even seeing the doctor.

I was called pretty quickly. The male nurse/assistant/whatever-the-heck-he-was was pleasant and led me to the exam room. When I sat down, he proceeded to tell me that my insurance had approved the injections but then after some changes, they revoked that approval. Great. Just my luck. This is why I don’t get my hopes up for any kind of medical care. He said the shots were rather pricey, and I probably wouldn’t want to pay out-of-pocket. “Hell no!” I told him. “At $3,000 bucks a knee? Nope!” He said they could offer cortisone shots, which I had had before with no noticeable pain relief…..and that was way back in 2011. My knees weren’t half as bad back then! No way in hell is a cortisone shot going to help now!

The nurse/assistant/whatever-the-heck-he-was was very apologetic about the wasted trip. He said he wished he had caught the problem as late as even yesterday, so he could have let me know. Not his fault. I don’t blame him.

It never fails. Every time I get close to getting help, I get shot down. It’s been happening year after year after year, with one thing or another, since 2007.

AND….AND….AND….the new doctor I found in January, whom I like so much, has left and they won’t tell me where. I would like to continue seeing her but how can I if I don’t know where she is? She may have moved out of state, in which case I will have to search for a new doctor but I most likely will have to see another practitioner in that same office, at least for the time being.

So for now, I keep my head up high and carry on! I’ll do what I have to do to take care of me until the time comes when they decide it’s time to do knee replacement because that’s the only solution there really is for me to have quality of life. I’m pretty sure their injections aren’t going to help much, even if my insurance approves them again.