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. 

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.

sleep_quote

What do you do when you can’t sleep?

 

So, What’s Next?

I am so sick of hearing people say, “Stay positive,” or “Have you tried x, y, or z?” No one understands the limitations of chronic pain unless they actually live it themselves. They think they’re being helpful with the positive outlook remarks and suggestions to cure my ailment. I know they mean well but they don’t understand. Those with chronic pain don’t want to be depressed. They don’t want to be sad. They don’t like staying home. When you’ve been trying to get help for over 10 years, you kind of lose hope and you lose yourself along the way too.

I’m nothing like the person I once was! I was a cross-country backpacker, worked with special ed kids, cleaned houses and started my own home Day Care for kids. I did volunteer work, worked as a Med Tech, started my own home business…and now I can’t do any of those things. I was a very independent young woman, with a great sense of humor. I was bubbly and always saw the humor in things. A great example is the time a co-worker and I were helping an elderly lady to the bathroom at the nursing home where we worked. We didn’t get her there in time and I ended up with “splatters of a yucky nature” all over my shoes. All I could do was laugh – not at the elderly lady – but at the situation. What else could I do? That’s just how I was. I had co-workers tell me they loved working with me because the day was enjoyable and went by faster. Don’t get me wrong; I still laugh a lot! I still try to find humor in my life daily, but that doesn’t mean I’m ok with being ‘stuck’ in this rut….and STUCK I am!

This chapter of my life is a most difficult one. I try to stay positive and focus on the things that I can do instead of the things that I can’t but do you know how difficult that really is? There is so much I can’t do! 

So, how do I create Deb 2.0? How can I reinvent myself when there’s so much I can’t do? My physical abilities limit the things I can do to actually change my life, myself. My bestie says that reinventing myself implies there’s something wrong with me in the first place. She’s right. There IS something wrong with me. I’m disabled. How does a disabled person change his/her life?

I would love to change my physical health but alas, that won’t happen until doctors decide they will help. I like who I am otherwise. I like my personality. I like my sense of humor. I am a strong, intelligent, creative, and compassionate person. So, how do I change this chapter of my life into something that I can be happy with?

 

15 Things About Me You May or May Not Know…. Do You Really Want To Know??

I am reluctant to write this post for fear off coming off as arrogant. It just feels odd to write a personal “about me” post. But, my therapist has told me time and time again to step out of my comfort zone! So here I am and here’s my list of 15 things you may or may not know about me.

  1. I despise people who claim to be Christian but are actually very hypocritical and self-righteous. They present themselves as good and honest but yet they say and do exactly the opposite of what Jesus would do. If you’re going to “talk the talk” then you’d better “walk the walk” is what I say, and very few actually practice what they preach.
  2. I am opinionated, but if I research something or someone helps me to see something I hadn’t seen before, I can and do sometimes change my mind. I tend to form opinions using common sense and logic, rather than political party, religious affiliation or anything else.
  3. I try to be honest and treat people with kindness even when they may not deserve it. I was raised to be respectful of other people, but sometimes when I’m disrespected I let ’em have it!
  4. I swear like a sailor. It relieves frustration. I do have class, though. I don’t just go around blurting out my favorite “F” word in public, on the internet, or if I have guests, although I have slipped a time or two especially when provoked.
  5. I have chronic pain and mobility issues. Many people don’t understand what people with chronic illnesses go through on a daily basis. Everything is a struggle; everything is exhausting. Research “The Spoon Theory” and you will find a very understandable explanation of what it’s like to live with chronic pain.
  6. I have two grown children, male and female, ages 27 and 30 respectively. I have 3 grandchildren, two boys, and one girl.
  7. I use to love to cook and I still would if it weren’t for my pain and mobility issues. I love Mexican food, Italian food and pretty much anything that is spicy!
  8. I live in the Bible Belt of SW Missouri and I don’t fit in. I have more Pagan views than anything else. Most people here are Christians.
  9. I try not to judge people. Everyone has a different journey; everyone has to make different choices in their lives. While I try really hard to NOT be judgmental, I can be at times and not over the things you might think. I don’t care about sexual orientation, religion, or color of skin. (A person’s character is more important to me.) What I will judge someone on is, if they leave a small child in a car (hot or otherwise) for 2 hours. Things like that tell me that a person is a worthless POS and doesn’t deserve children. HOW on EARTH can anyone forget their child is in the car?? I will damn right judge you if you don’t put your children first, all the time!
  10. I listen to hard rock, metal, classic rock, and Celtic music. I almost always have music playing. Music can change my mood from shitty to happy in an instant. Music brings back many memories; some memories I’d like to forget, but past experiences (good and bad) make me who I am. I may not like ME sometimes, but what else can I do but carry on?
  11. My favorite sounds in the world are babies (or small children) laughing, and cats purring!
  12. I am contemplating writing a cookbook, but I have so many recipes it’s rather overwhelming!
  13. I love Medieval History and castles, especially the castles of Scotland!
  14. I love to write although I don’t think I’m particularly good at it.
  15. I have 6 cats and would have more if it weren’t for my disability. It’s difficult the way it is taking care of the 6 I have.

So, I don’t know how any of this sounds to an outsider. I may sound like a complete a**hole. I don’t know. If you want to know more about me, then feel free to ask in the comments and I will do my best to answer!