Tag Archives: chronic illness

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.

Scrambled Eggs For Brains

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I despise this time of year for several reasons. The main reason, and most personal, is the lack of grandkids filling my home. I had so hoped for a full house of littles in my 50’s but I guess that’s just not meant to be. I have 4 grandkids now and the most I can hope for is a little time spent with the youngest.

Another reason for my loathing of the holidays is the fact that everything is so commercialized. It’s all about how many millions of dollars brick and mortar stores and online shops can pull in and about damn near every family in America feeling the need to go broke just to provide their families with gifts that they don’t need, don’t want or just don’t freakin’ deserve. I mean, how many teenagers have you known who deserved a brand-spankin’ new car for Christmas? I’m sure there are some out there, don’t get me wrong, but I’ve seen the worst, most spoiled brat teenagers get brand new cars and it makes me want to drop-kick their parents off a cliff.

I try to make my nieces and nephews crocheted items every year…which is getting rather difficult because there’s so damn many of them! My grandkids get crocheted afghans or toys, or whatever their parents think they need or might like. My kids get something useful because at their ages (30 and 33) they can buy their own expensive toys and be happy with a kitchen gadget or something of that nature. I bought Dad a motorized antenna because he insists that he doesn’t need DirecTV in his bedroom. The old-school antenna fell down months and months ago so he’s been without tv in his bedroom. He knew what I was getting him because I needed him to check it out first to make sure it was something he could use or would want. He did and so there ya go. Now he says he doesn’t know what to get me so I should pick something out for myself from him and surprise him. Always a joker. Now I have to decide what I want.

I’m really exhausted…mentally and physically. My brain is just scrambled most of the time. I can’t focus. As I type this, I have to keep checking my spelling because inevitably I turn the letters around or leave letters out. That’s not normal for me. I thought maybe it was just from doing Thanksgiving dinner, which we had the Sunday following Thanksgiving because I needed time to prepare after being sick for 12 days. I tried to make it as easy on myself as possible. I made absolutely nothing homemade. It should have been easy, right? After all, dinner was just four people and everything was boxed, canned, instant, frozen, and/or just needed simple assembly. The turkey breast soaked in a brine for 2 days and on Sunday morning I tossed it in the roaster. I was in so much pain afterward…and I’m still paying for it. I thought I would feel much better by now.

Our traditional fixings for our Christmas Eve (homemade pizza, pizza balls, and popcorn cake) will have to be made by my son or he just won’t get them this year. I just can’t do it anymore. Last year, he came over to help me make them and all was going well until I fell like a dumbass. I had huge bruises on my thigh and didn’t walk right for a week.

I’m not even going to put up my little tree like I did last year. I just don’t have it in me. I have no motivation, no inspiration, no desire. That’s what chronic illness does. It takes away a person’s desire to do the things he/she used to love to do. It’s exhausting

I still have packages to ship, a few gifts to wrap, and Christmas dinner to plan. I think I’m just going to buy a ham and some baked beans and be done with it. Nothing special…but gotta have my ham! If my brain isn’t already scrambled enough, going to Walmart will surely drive me to the brink of insanity!

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

 

Some Will Never Understand….

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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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