Emotions

I have been trying to write all week. I just can’t seem to focus. I’m feeling overwhelmed with grief, sadness, depression, worry, gratefulness, and so many other emotions lately. It’s hard to concentrate when so many things are going through your mind, constantly.

Depression is probably my biggest enemy this week. Since my pain level has been so high, I’ve had a hard time getting around. It seems that it won’t be long and I won’t be able to walk at all. Then what happens? I try not to think about it. It doesn’t seem to matter to the doctors I’ve seen. They just don’t seem to understand the gravity of my situation. They see my situation on paper, Xrays, MRI’s, etc., but they don’t see ME.

I am still grieving the life I once had. The life that I should have had after my kids were grown has changed into a life of chronic pain, depression, and mobility issues. Not too long ago, I started seeing a light at the end of the tunnel. I thought I was finally going to get some help. That idea was shattered like always.

I do have things in my life to be happy about and wonderful things to be grateful for. It’s hard to see those things sometimes because when you’re in constant pain, it over-rides everything. Your world seems to be THE PAIN. Everything you do revolves around THE PAIN. Getting groceries, going out with friends, hanging out with family, spending time with the grandkids….all revolve around the pain level of the day.

I’m very grateful to my friends and family who are praying for me. My circle is small but at least I know who my real friends are. Some of those friends are people I have never met but I trust them more than most people. They are not just friends; they are family and very close to my heart.

Only my friends and family who have chronic illnesses truly understand how difficult life can be. They understand how sadness can overcome you. They understand how much you want to do something and they know why you can’t. Those who do not suffer from a chronic illness have no idea how hard it is to stay positive — but yet they tell me to “Stay positive” all the time. Maybe it’s because they don’t know what else to say, but I wish they wouldn’t say anything at all. I know they mean well, so I don’t hold it against them.

All I can do at the moment is hope that next week is better.

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. 

Hopeful…. But Not Too Hopeful

I’ve been sitting here at the computer tonight, not really into anything in particular. My mind is elsewhere. I’ve got an appointment tomorrow with my ortho doc.

6 months ago, I tried the Synvisc-One injection in my knees. I had such high hopes. When I left the office, I was walking faster than I had in years and I had less pain. The shots seemed to have helped! I went home, under orders to not overdo it, so I took a nap. When I woke up the effects of the injections was gone. Despair set in. I couldn’t try the other injection for 6 more months!

I’m not really anxious about my appointment. I didn’t experience any severe pain with the last round of shots so I’m not worried about pain. I guess I’m just trying to keep myself from becoming too hopeful. High hopes have always caused disappointment in the past. I still have to hope this round of injections will ease my pain, but I’m not counting on it. I never count on anything to actually pan out in terms of help for my pain issues….story of my life.

I’ll hit the sack tonight with hope for a good result tomorrow but I’m not going to let it keep me awake thinking about it. I guess that’s part of the reason I’m writing about it. Getting it off my chest before bed.

Fingers crossed. That’s the best I can do.

 

 

Some Will Never Understand….

Something has been on my mind lately. (Well, something is always on my mind! I can’t help that.) I’ve been mulling this certain thing around in my head for nearly a week now. I have to write about it to get it out of my brain!!

A friend of mine, read something I had posted on Facebook about chronic pain issues. She messaged me about it. She said she had read several things I had posted about chronic pain and chronic illnesses, and even some personal things about my own situation. She said she couldn’t help but notice how focused I was on my pain. Immediately, I felt defensive.

HER: Why are you always focused on your pain?

ME: Because my pain is a huge part of my life. Everything I do or don’t do is based on my pain level.

HER: If you just forget about it you’d be happier.

ME: How do you know I’m not happy?

HER: Because you always seem to complaining about your pain.

ME: You ain’t even heard complaining yet!! I save that for my therapist.

HER: You see a therapist and you still focus on your pain?

ME: Yes, I see a therapist. She has been very helpful in teaching me how to deal with my pain and other issues.

HER: What other issues?

ME: That’s none of your business.

HER: Ok. I still think if you’d just stop focusing on your pain, you could live a better life.

ME: You have no idea, and you never will until you are faced with a chronic illness, how hard it is to even get out of bed on some days. You will never understand that just taking a shower sometimes takes all the energy you have for that day. You don’t realize how much time it takes to do any given task because of your pain. You have no clue how depressing it is to not be able to just go and do the things you have always enjoyed, such as hiking, site-seeing, playing at the park or going to the zoo with the kids/grand kids, making bath products, fishing, shopping for hours on end at the Mall, planting a garden every Spring, rearranging the furniture, volunteering, washing the car, holiday celebrations, birthdays, cooking, going to the movies…. You don’t have a clue! When you have a chronic illness, your entire life changes! Everything is different. You approach things differently. You do everything differently. I hope to God, you never have to know what it’s like to have chronic pain!

HER: Isn’t it just arthritis?

ME: (Seriously wanting to punch her in the face!) It’s not JUST arthritis! It’s arthritis in my entire lower body, from my hips all the way down to the joints in my toes. It’s a degenerative disk in my spine and arthritis working it’s way up. It’s arthritis in my fingers, that gets bad when it’s extremely cold and even worse if I don’t crochet every day. It’s arthritis, that has resulted in knee bone damage with severe pain! I walk with a cane because sometimes I am very unsteady on my feet. I can’t sit, stand, or walk for more than 20-30 minutes at a time. I am in pain 24/7. I get NO relief! I don’t even sleep well due to the pain!!

I hit send on the messenger….but I wasn’t done. I had to stop this conversation.

ME: Don’t say anything. You are seriously coming close to ending this friendship. I’m done with this conversation.

That was the end of it…. I haven’t heard squat from her since. That’s ok because I don’t need the drama. I have enough to deal with. 

Honestly, if you don’t have a chronic illness, then you will never understand completely. You can try. You can also try to be more understanding of those who DO have a chronic illness. They really could use your support.

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Update – The Fight Continues

In a previous post I made a list of 4 things that I am going to work on in order to become healthier. I list those things again, below, but this time with the actions I have taken thus far.

#1. More Exercise – My Dad bought me stationary peddle exerciser. I am using it twice per day for at least 10 minutes at a time. I will increase the amount of time as I become accustomed to it. The first day I used it, I went 10 minutes and I hurt all night long. My enemy (arthritis) was not happy with me. Too bad.

#2. Change My Diet – I have begun eating healthier foods. I am trying to be aware of what I’m eating at meal time. I’m drinking more fruit juices, water & milk. I am eating more fresh fruits and veggies, nuts & whole grain products and cheese. I will not lose my chocolate so I am eating dark chocolate, but not every day!

#3. Use Essential Oils & Herbs – I made myself some Arnica Massage Oil, which I use each night to help ease the pain and relax my muscles. I use epsom salts and a dab of peppermint essential oil in my bath water; but so far I take more showers than baths. I dab a little lavender essential oil on my wrists when I begin to get depressed or anxious. It’s very calming. It’s really too hot & humid right now to enjoy a cup of Chamomile Tea before bed, but when it cools down I’m on it! Then maybe I will sleep better.

#4. Reduce My Weight – This is the one that will be the hardest of all to accomplish! BUT using the list above, my weight should slowly be reduced. I don’t have a scale so that’s on my list of things to do.

I am still drinking an 8 oz. bottle of Elations each day, taking MSM, Vit. D & Calcium supplements, drinking 6 oz. of black cherry juice each day. As much as I don’t like to do it without a Doctor’s guidance, I’m taking 1 Aleve every 12 hours. It’s the only thing that will help even a little bit. I am feeling a bit better. The pain is still there, I’m still a bit depressed but it’s hard to distinguish between depression from the pain and depression from personal family matters. BUT I’m going to do whatever I can and fight this enemy of mine! Of course, I’ve yet to finish jumping through all the hoops necessary for Medical but I’m not done fighting yet!