Tag Archives: chronic pain

Yes, I Have Changed

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Chronic pain and I have been well acquainted for about a decade now. I’m not happy with that at all. I’d like to kick its sorry ass to the curb.

I try my damnedest to put on a brave face, to smile around others; to not allow pain to ruin my life but I’ve been unsuccessful. Sure, in the beginning, it was easy. In the beginning, the pain wasn’t constant and didn’t reverberate throughout my entire body.

I’m writing this not for sympathy but for understanding. So many people don’t understand what it’s like to live with constant debilitating pain. They don’t know what it’s like to not be able to do the simplest of tasks; the tasks you once did when you were younger or before the pain took over your body. They have no idea how difficult life is for a person with chronic pain.

I’m not lazy. I’m in too much pain to do chores like you. I’m not unsociable. I just can’t put on a brave face or a smile and enjoy someone’s company most days. It’s not that I don’t want to see my friends or family, I’m just in too much pain. Pain is exhausting! I do care, more than you will ever know but most days, I get out of bed and do only what I MUST do, like shower, do a load of laundry, or fix something to eat. I only leave the house to do what MUST be done like pick up groceries, go to the doctor or some other appointment. Once a week Dad likes to go out and eat. I go with him because it’s the only thing HE does or WANTS to do these days. He’s not going to be around forever. He’s going to be 83 years old in February. I want him to do the things he likes to do, even if it kills me.

I just can’t be the person I used to be. Pain has changed me. Chronic pain affects your mental health, changes your moods, behaviors, the way you interact with people, and even your personality. People try to help with their sure-fire remedies but they don’t understand. They think you’re not trying to get better or not doing anything to help yourself. You stop socializing. Family retreats because they can’t help you or don’t know what to say. You become more and more isolated, from friends, loved ones…and LIFE. You’re now saddled with not just pain, but loneliness and sadness. You feel unnecessary. Your life is not what you envisioned it to be. You can’t really see a future for yourself.

I hope that if you know someone who suffers from a chronic illness, that you might be a little more understanding of their situation. Offer to help with chores. Let them know they’re necessary and important to you. Understand that they do care about YOU. Make them laugh with a funny story. Help them feel that they matter. Help them to feel less isolated and lonely.

As I mentioned before, I’m not writing this for sympathy. Writing helps me – like meditation might help someone else. I write to convey a message, or just to get things off my chest. Sometimes, I can connect with others in similar situations and maybe offer moral support. I’m thankful for all those people who help or have helped me in the past, be it moral support or something else.

Chronic Pain and Depression

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I’ve been depressed lately. I’ve only spoken to 2 other people about the issues bringing me down and I won’t discuss the details here but there are a few things I do want to say.

No one really understands what a person with chronic pain is going through. They will never understand until they’re the ones suffering from it. It’s debilitating. It’s exhausting. It’s sad, and it’s lonely.

I can’t just make plans to go do something because I don’t know what my pain level is going to be from one day to the next, or even from one hour to the next! When it rains or when the barometric pressure rises, I am in more pain than usual.

I don’t want to be sitting at home. I’d like to be working. I’d like to be doing the things I used to do. I’d like to be able to pursue the hobbies and activities I thought I would be pursuing at this time in my life. I’d love to be able to go visit my grandkids, near and far. I’d love to go to the movies, hit the Mall, or go to a Flea Market. I’d love to go to museums, haunted houses, and concerts. Hell, I’d love to just do the simple things we all take for granted when we’re healthy, but these days everything is a painful chore.

I have good days and I have bad days, but let me be clear: Having a good day does not mean I’m pain-free. It just means my pain level is at a more tolerable level. Just because I smile or crack a joke doesn’t mean I’m not in pain. It just means I’m trying to be as close to “normal” as I can be, for appearances. I don’t like people feeling sorry for me and I sure as hell don’t like being the center of attention. So, I try to be “normal” like you.

I’m not lazy. Chronic pain is not an excuse to get out of doing things. I don’t have the energy to go to events like birthday parties, weddings or luncheons. When I do attend a function of any kind, I have to leave early. I just can’t handle hour upon hour of socializing and appearing to be happy. Another consideration is accessibility. Will I be near a restroom or will I have to walk a long distance to get there? Will there be stairs or an upward/downward slant? Will I be able to sit down? Is there a place where I can rest? Will I have to stand in line? There are so many things I have to consider before doing anything.

When you suffer from chronic pain, you also suffer a loss of identity. The things that made you who you are, are gone. I used to be a cross-country backpacker. It was something I hoped I could back into when my kids were grown and out on their own. I can no longer look forward to that. I used to be a great cook. I used to be a small business owner. There are so many things that made me who I am but now I’m having to find a new me. It’s hard to reinvent yourself when you can’t actually do anything anymore.

I hate when people say things like, “I hope you feel better soon,” or “Have you tried x, y, or z?” Seriously? Yes, I’ve tried everything under the sun. Nothing helps. Someone once said to me, “It’s just arthritis.” If this were just arthritis then I could be more active and exercise some of the pain away. If it were just arthritis I could find a simple remedy that would ease my discomfort. But it’s not just arthritis. I have joint damage in my knees. My legs are bowing outward at the knees. This is what makes walking and moving about so difficult, so painful. Then there are the people who, good intentions or not, are very condescending. Calling me “hon” or ‘sweety” when I’m having a bad day is a sure-fire way to get ghosted!

Chronic pain never goes away. Chronic pain causes depression, anxiety, changes in mood, appetite and sleep patterns. It causes loneliness, grief, isolation, and fear. Yes, FEAR. Every day, I have to think about every movement I make, every step I take, for fear of falling or doing too much and making my pain level go up even higher. I fear that I will injure myself and lose the little mobility I have left. Have you ever thought about being stuck in a nursing home? I have.

I’m so sick and tired of being expected to do things. I only go out when I have to go out. I go out for groceries once a week, go to doctor’s appointments, pick up meds, etc. Yes, I go out to lunch once a week, but that trip serves a dual purpose. I normally have other errands that need to be done. People don’t realize that in between those days is rest and recovery.

On top of the daily struggle, the holidays are approaching. The most depressing time of the year for me. I won’t have family and grandkids around. I won’t be able to cook all the delicious yummies I used to make for my family. I can’t wrap gifts easily, so gift bags it is! I can’t decorate or put up my big tree. I won’t be looking forward to any of what the holidays bring.

I’m not writing this for sympathy or attention. I want people to understand what chronic pain is and what it does to a person’s life. It’s crippling. It’s not my cup of tea and I’m pretty sure it’s not yours either.

 

 

 

12 Spoons

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I don’t recall if I’ve ever written about The Spoon Theory before, but even if I have it’s a good time to review and remind. Please be sure to open the link above to read the explanation of “spoons” and what it means to a person with chronic pain or a chronic illness. After you’ve read The Spoon Theory, come back here. Go on. I’ll wait.

Ok, now…. I’m not writing this in hopes of receiving sympathy. This is more of an infomercial or public service announcement, in hopes of helping people understand what it’s really like to live with chronic pain. People just don’t understand unless they’ve experienced it themselves. You see, when you have chronic pain – and it doesn’t matter if it’s pain caused by OA, RA, fibro, lupus or something else – it controls your life. It controls your every move, every activity. Your day is planned around and according to your pain level. Chronic pain means ongoing and never-ending PAIN.

~~~

Dad and I were going out for lunch yesterday. It’s our normal weekly outing and it’s exhausting so I have to plan the day carefully so not to get so tired. Some days, I start out with fewer spoons because I didn’t sleep well, or because my pain level is higher than normal.

I started with 12 spoons Saturday morning.

It took 2 spoons to get up, get dressed, brush my teeth and do hair and make-up. (Very little make-up in this flippin’ heat!)

10 spoons left.

I spent 1 spoon making sure the house was ready to be left alone. (Cats all accounted for, lights off, coffee pot off, back door locked, etc.) It takes a lot of energy to do little things like this when you have a chronic pain issue.

I now have 9 spoons left for the day.

The drive to Mountain Home, AR wasn’t that bad. It’s just 50 minutes, give or take, from our house. No spoons spent.

2 spoons spent at Hobby Lobby. Yarn is way in the back left of the store. They don’t have scooters and their wheelchairs are just too big and awkward. Walking is getting harder and harder every day. Standing in a line that should have been shorter if they had more than one cashier, was difficult. My legs were not happy.

7 spoons left.

2 spoons spent going to The Dollar Tree. Great aggravation set in due to the fact that I couldn’t get out of the car when I parked. The car to my left swooped in just after I did and was just a little too close for me to open the car door all the way. I tried to get out, but I just wasn’t able to. It wasn’t the other driver’s fault. They were parked within the lines but I had to find another parking spot. It was a little further away but that’s because so many businesses don’t put their disabled parking spots closer to the door. I can’t wrap my brain around that one! The store wasn’t too crowded, thankfully. I got what I needed quickly enough, but again, the walking…

5 spoons left.

Stopped at the grocery store to pick up a few things. They have scooters so I spent 1 spoon walking from the car to store and finding the items I needed inside. Scooters make my life so much easier!

4 spoons left.

We stopped at El Chico, our favorite Mexican restaurant. I had a frozen alcoholic beverage and got about 3 brain freezes. We had a nice, relaxing meal. The food was delicious, as usual! I had 2 avocado enchiladas with rice and beans. I think I recharged enough to gain 2 spoons back!

6 spoons now! 

On the way out of town, we stopped at a liquor store and bought 2 huge bottles of Kahlua Mudslide. No spoons spent really. That was easy, especially after the recharge! The store was small and I knew exactly where to find what I wanted.

The drive home was easy; just simple conversation with Dad and my legs were able to rest for another 50 minutes.

2 spoons spent unloading the trunk when we got home.

Back to 4 spoons.

Subtract another spoon now for putting things away.

3 spoons.

Spent 1 spoon feeding the cats. I had other chores that should have been done but I saved them for the next day (today). I have to pick and choose what I do each day because I can’t do it all. If I try to do it all then I pay for it for a couple of days afterward.

2 spoons remaining for the rest of the evening.

Took about a 40-minute nap and gained a short recharge of about 1 spoon. Yay!

3 spoons again.

After washing my face and brushing my teeth, I was left with 2 spoons. Then getting my pajamas on, preparing the house for shut down (lights and tv off, coffee pot set, pills taken, my bed prepared, etc.) took the rest of those spoons and I barely made it to bed. I was exhausted. I go to bed every night in hopes that I get good restful sleep so that I can start my day with at least 12 spoons.

I slept fairly well with the help of the Mudslide, but it wasn’t restorative sleep. It never really is. I sleep for 45 minutes to an hour and wake up. The pain is so intense that I have to keep changing positions. That can be exhausting when you have chronic pain. I do the best I can to get comfortable and hope to fall back asleep quickly. Sometimes I do and sometimes I don’t. Some mornings I start with less than 12 spoons!

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If you know someone who is suffering from chronic pain or any chronic illness, please try to understand their frustration of not being able to do the things that others do. If you see someone on a scooter and they ‘look’ like they are capable of walking, remember looks can be deceiving. Not all chronic illnesses or disabilities are visible. Perhaps the person CAN walk but is trying not to expend all their ‘spoons’ getting groceries because they still have to get those groceries loaded into the car, unloaded at home, and then put everything away.

You will never understand fully until it happens to you.

grayscale photo of wheelchair

Photo by Patrick De Boeck on Pexels.com

 

The Things I Miss The Most…

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If you’ve been following my blog for much time, you’ll know that I suffer from chronic pain and mobility issues. I’m in pain 24/7 and if it wasn’t for my pain meds I’d be climbing the walls for certain. Without pain medication to “take the edge off” I wouldn’t be able to function at all. I’m thankful that I can still do a little, even though it’s not a lot.

I was thinking last night about all of the things I used to do and how much I miss doing them. It’s terribly depressing. I can’t believe I’m in this predicament at only 56 years old. I am thankful for what I have and what I can still do, but I do miss all the fun things I used to do just 15 short years ago.

Most people take things for granted, as I did. I never thought I’d be in this shape. I never had to think about what I couldn’t do because I could do anything I wanted to do, if I chose to do so.

These are some of the things I miss the most:

  1. Walking & Hiking – I used to be a cross-country backpacker and had put that on the back burner while I raised my children. I still took walks and when we moved here to SW Missouri, we established some trails and I started walking them every day. Now, I’m lucky to walk to the bathroom. I have to think about every step and every movement because if I step wrong I could fall. If I fall, I could suffer an injury that would reduce my mobility even more.
  2. Cooking – I used to love cooking. I was damn good at it, too. I have many cookbooks and I always enjoyed trying new recipes and switching them up a bit to accommodate my family. I’m barely able to throw a frozen dinner in the microwave these days. I know that’s a simple task, but there’s still the movement around the kitchen collecting silverware, napkins, plates, etc., and pulling the fixings out of the refrigerator for salad or some other side dish.
  3. Cleaning & Organizing – Yes, I said cleaning. You don’t know how much you miss such a mundane chore until you can’t do it anymore. My house was never immaculate. I had kids and pets. Shit gets dirty. I didn’t stress over it but I cleaned the house once a week. My house used to be organized. Everything had its place. I even packed away the kids’ summer clothes in the winter and winter clothes in the summer. These days, I can’t clean weekly. What most people do each week is what I do once a month. I do a little each day. That’s all I can do. My house is horribly unorganized these days. I have boxes shoved in closets and I don’t even know what’s in them! I’ve started going through things but that’s going to take me the rest of the year to get done! If I’m lucky!
  4. Going to the Movies – Oh, how I love seeing a movie on the big screen! I used to take the kids to the movies a couple times a month. I’d grab my “movie” purse, which is huge, and I’d smuggle in candy so all we had to pay for was popcorn and drinks. Those were the good ol’ days! Now, going to the movies is painful and awkward. I walk very slow and I feel like I’m going to get trampled. I only have one hand available because I have a cane in my right hand. Someone always has to carry my drink or popcorn. I try to grab seats where other people aren’t going to walk over me to get to other seats. The last time I went to see a movie, people were walking over me and kicking my feet in the process, which causes excruciating pain up and down my legs. I was in tears. We were in the very back row of the theater, too!
  5. Shopping – Yes, even grocery shopping! It’s exhausting, even in a scooter, trying to maneuver around idiots who have to have a stinkin’ family reunion in the middle of the aisle. It’s hard to reach things, even things that aren’t really that high. It’s hard to reach down and get something that might be back a little too far on the bottom shelf. Last Fall, I had the bright idea of going to the Mall and I thought I was going to die. I had my rollator with me so I could walk a little and then sit and rest a little. It was still too much. Any shopping is something I have to work up the courage to do. You just don’t understand unless you’ve experienced chronic pain.
  6. My Home Business – I made my own bath & body products; soaps, bath salts, lotions, body sprays, etc. I loved it! I started with tried and true recipes and then through research and trial and error, came up with my own recipes. I had managed to create a base of repeat customers and was hopeful about the future of my business. I had to close in 2010 because like cooking, it’s a lot of movement in the kitchen that I just can’t do anymore.
  7. Restorative Sleep – I used to sleep good and hard every single night. These days, I’m lucky to get 5 hours of sleep. Not restorative, restful sleep either. It takes me a long time to fall asleep because I can’t find a position that’s comfortable. Between the pain and not being able to relax, it takes me sometimes 2 hours to fall asleep. Then, I’ll sleep for 45 minutes to an hour or so and wake up again. I do this all night long.
  8. Exercise – I always hated exercise when I was younger, aside from walking. Now I wish I could do any exercise without excruciating pain! I bought a recumbent bike a few years ago thinking I might be able to do it but that was a big fat NOPE. I have a glider that I do on occasion and the only reason I can do it at all is that you don’t have to bend your knees to do it! It’s still painful and I push through, but sure wish I could do it more and without pain.
  9. Playing on the Floor with The Littles – The fun of having grandkids is being able to play with them. I used to get down on the floor and play Legos with my son. My daughter and I used to sit on the floor and do puzzles on the coffee table. Nowadays, if I get down on the floor it’s because I’ve fallen and I won’t be able to get up.
  10. Taking The Littles to the Park or Zoo – The last time I went to the zoo was when I was in charge of my grand daughter’s preschooling. Boy, we had a grand time! She learned a lot that day about animals and their habitats. My legs had just started bothering me so I had a little trouble but not like today. If I tried today, I would have to have a scooter or be pushed in a wheelchair.
  11. Hanging Photos – I used to switch up photos of my kids, nieces, and nephews all the time. I just don’t have it in me anymore to hang new ones, and now I have grandkids and tons more photos!!
  12. Gardening and Yard Work – Our yard used to be the nicest one for miles. Total strangers would stop to tell us how nice our yard looked! I loved working in the yard and in the garden. I even helped Dad with the mowing. It was peaceful on that riding mower. Therapeutic in a way. I can’t mow these days because the vibration reverberates through my body and THAT is painful as hell. We always had a nice garden with all kinds of vegetables, from Anaheim Peppers to Zucchini. I had tulips, irises, roses, and lilacs in flower beds around the house. Now, I can’t do the work. I miss the veggies and I miss the flowers. My lilac bush is still alive and the irises are growing wild…but so are the weeds. I hate it.

There are so many things I miss from my “old life” but I try to be thankful for what I can do now. It’s hard to stay focused on the good when there’s so much negativity all the time. It does cause some depression but, like I said, I am thankful for the things I can still do.

Pushing Through, Again

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The pain new medication I started a week ago seemed like it was helping with the arthritis in my legs but wasn’t doing much for my knees. I had every intention of giving it at least 2 weeks, but after a week I realized the pain in my knees was worse. I was using the wheelchair for the last 2 days because the pain was so severe.

I didn’t sleep well last night due to a burning sensation in my knees and I woke up feeling like I could just take a nice leap off a cliff…. I didn’t like the depressed mood I was in. I called my NP as soon as the office opened.

She told me I could stop taking the Celebrex and that she would call in my Diclofenac, the pain medication I had been taking for the last 6 years or so. I realized it must have been working better than I thought. I was feeling its absence, most definitely.

I had some Diclofenac left from before I started the Celebrex so I took one at my usual time. Within 4 hours, I was feeling a little less pain. Now, it’s that time of the day when my pain level is higher and I have a harder time doing things, so I should be in better shape tomorrow morning. We’ll see. I will need to go pick up my prescription soon.

I am seriously tired of being in pain 24/7 but I keep pushing through it because the alternative is worse. I can’t give up. I can’t quit.