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. 

The Withdrawal, Oops.

I’ve had some sleep problems this past couple of months. It became evident to me just 2 days ago (because apparently, I’m a bit slow) that my sleeplessness was a result of medication withdrawal. I had been taking a medication for nerve pain twice a day and decided that I would go off of it because I really didn’t think it was helping much. I didn’t just stop cold turkey. I knew to reduce slowly. I Started taking it once a day instead of twice and did that for about 2 months. Had some restlessness at night. Had a bit of itchiness. It never occurred to me that it was the medication, or rather the lack of…

Then Tuesday night before bed, I was lazy and didn’t take one at all. I figured what the heck. It’s just one night and I want to stop taking it anyway.

That night I was awake all night. I itched all night long. I felt like I had bugs. I never fell asleep at all! I was up at 5am. At this point, I had been awake since Monday morning. I tried to take a nap. Nothing happened. I was tired and I needed to sleep but something was preventing me from sleeping.

Late Wednesday night, before bed, I remembered I hadn’t taken that medication Tuesday night. I looked up the symptoms of withdrawal. Bingo. Duh me.

Sleep disturbances and frantic itching. (Among other very serious symptoms, so I was lucky.)

I made sure to take the medication when I went to bed Wednesday night. I slept well, with no itching. I took it again in the morning. Back to twice a day now, and I think I’ll stay ON the medication because my pain level has improved a bit already. I guess it WAS helping after all.

Slept like a baby last night….without the bedwetting, of course!

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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.

 

Back On Track!

If you’ve been following my blog for any length of time, then you know I have pain and mobility issues. You also know that I am in dire need of knee replacement surgery. First, a not-real-quick recap:

My journey started around 11 years ago, with a doctor that didn’t do anything from the very beginning. Now, let me just say that I knew I needed to lose weight and I KNEW I had to do this myself, but from the get-go my doctor did absolutely nothing to help me with anything. I had trouble since my first child was born, trying to lose weight. She said, “You just need to count calories” and offered absolutely NO assistance or guidance. She gave me a script for pain meds and that was the end of that.

When I FINALLY got my doctor to refer me to a specialist in 2016, I was thrilled. I thought I was finally getting somewhere. Well, the specialist was an asshole with a God complex and shamed and belittled me for 40 minutes. (It’s not like I weighed 600 pounds…not even half of that at my heaviest!) It was something I will never forget. Anyway, shortly after that happened I signed up for Nutrisystem.

Nutrisystem was what I had needed years ago but never had the money to spend on it. It works but it’s quite costly. I did the program faithfully and religiously for almost a year until I was so sick of the food I had to take a break. I had lost 60 pounds, and with high hopes went to see my new doctor, who set me up with a new specialist.

The new specialist was impressed that I had lost 60 pounds in less than a year. However, this was not enough of a loss to consider surgery yet, plus I needed to strengthen my leg muscles.

Fast forward, to last summer. I was so sick of Nutrisystem foods that I stayed off the plan for a bit. We had company off and on and we went out to eat a LOT. Then, Thanksgiving rolled around….and Christmas….and well, I GAINED 25 pounds back!

Uh oh. I need to do something, right? So, in January I purchased an exercise machine called an Air Walker. It’s an elliptical, but not a traditional elliptical. It’s more like a glider instead of a stepper. I purchased this scary contraption because the video showed the woman was NOT having to bend her knees. Perfect for me! I started with 5 minutes a day and worked up to 5 minutes, 3 times a day. Not a lot, I know, but it was more than I was doing before! I worked up to 10 minutes twice a day and now, I’m doing 15 minutes twice a day! Yay! That’s 30 minutes a day and just a little over 1700 ‘steps’ per day. I feel my legs getting stronger. I’m not using the wheelchair as much, but still using my cane.

Also in January, I restarted Nutrisystem. Then I f***ed up. So, I started again…. I restarted the program 4 times since then! The food was just too much for me to hack anymore. Not that it’s bad; most of it is decent and some quite good. It was just the same ol’ same ol’ over and over again. Blah.

That’s when my daughter, SR, texted me and told me that she was doing Weight Watchers. She told me a little about it and the cost wasn’t too bad; less than $20 month for online only. So, I signed up! (Apparently, WW has changed quite a bit since the last time I looked into it.)

I started last Sunday and caught on very quickly. It’s not hard to do at all. No meetings or humiliating weigh-ins. You track the food you eat and stay within your point budget, determined by WW. One week later, I have lost 8.4 pounds.

I lost 8.4 pounds in one week!

(I know some was probably water weight but I’ll take it!)

I’m back on track, finally. I will keep on until I have my weight down (and my BMI) to what the specialist wants and I’ll get my legs stronger so recovery will go smoother. I can’t wait to go back to the specialist and say, “Hey, enough waiting. Let’s get the show on the road! I have an exciting life left to live!”