My People

My People
My matched set of grandchildren - Oliver and Cosette

Saturday, February 8, 2014

The Long...

I sprinkle a lot of whine in my blog posts so I feel like anyone who reads here regularly pretty much gets the picture that *eyeroll* I live with a lot of pain. I thought it might be interesting to share exactly what is different in my life now than what my life was like three years ago before I boarded the Pain Train. (Wouldn't that be a great name for a band?) It not that I'm looking for sympathy. I think most of my blog readers are here because they have at least some mild interest in what happens in my life. I also would bet that you probably have someone in your life (other than me) who has similar differences and maybe knowing what I deal with might help you help someone you love.

I think I have most of my diagnosis' listed in the sidebar but for a summary, my back is whack. I have an extra vertebrae which, by itself is not a big deal and is fairly common but in my situation it put extra pressure on the other vertebrae causing some of the effects of aging to occur sooner than usual. Over the course of my first forty years of life I have been overweight for half of that time, was in a couple of auto accidents where I was hit from behind, took a dozen or so significant falls (once while holding two kids - the kids did NOT hit the ground!) and in general just was not kind to my spine. As a result I have developed osteoarthritis in my spine, some bulging discs, some nerve damage, my spine is impinging my spinal cord and certain positions are particularly painful. There is instability in my spine which makes any repetitive movement - walking, climbing stairs, etc - cause pain. The greatest point of pain is my lower spine - right where the tailbone starts - which makes sitting upright in a regular chair anywhere, regardless of how well padded it is, extremely uncomfortable.

There are a few other things that complicate things - chronic migraines, scar tissue in my lungs which makes me susceptible to respiratory illness and mildly restricts my lung capacity. I have a COPD diagnosis but not in the sense that I'm walking around with an oxygen tank, it just means that there's stuff in my lungs that make them not work as well as they should. There's a fibromyalgia diagnosis which means that at odd and random times I feel like I have the flu - everything hurts and it's a huge, huge ordeal to do anything and everything. Seriously - walking from one side of the room to the other is like running a marathon. I have piriformis syndrome which feels like someone is putting a hot poker against the nerve that runs down the middle of my butt cheek and causes pain that radiates down into my leg. There is nerve damage that extends from basically the waist down which causes several different issues.

Still with me? There's one more issue that doesn't have a definite diagnosis and won't until I have some kind of medical insurance in place. I get this ungodly pain in my lower left belly. It's occasional - not every day - but at least once a week. It's bad enough that the strongest pain meds that I have for my back only take the edge off it. My pain doctor is guessing, just based on the description of the pain and the location, that it is a hernia and I have instructions of what to watch for and when I absolutely have to seek medical treatment for it. It's just one more layer to the onion for me and one more thing that hinders me from time to time.

When I talk about the "pain of the day" it's not a dramatization. There truly is never a day that I don't have some kind of discomfort somewhere. What this means is that no employer anywhere wants me on payroll because there is never a week that I wouldn't have to miss a couple of days. Even when I tried to work only a few hours a week, it didn't work. So I would say that the main difference between myself and the average person my age is that I'm not able to work.

Because my pain is so positional, anything that involves sitting in any other way other than reclined is painful. Depending on other factors (the weather, for example) that pain can vary between being just a little distracting to being absolute miserable. Sitting in a reclined position has it's own discomforts. It tends to aggravate the piriformis syndrome and I have to be very careful not to impinge any nerves by crossing my legs or I completely lose feeling in my feet. I can't work mainly because I can't sit.

One thing we determined with the Function Capacity Evaluation is that climbing stairs is a big problem. I live in a 3 story house but am very blessed to have just about everything I need on the bottom level - including a gorgeous view. Our kitchen is one story up and for now, I make the trip up the stairs for most mealtimes. Occasionally, especially if the pain is really bad, I just eat things like granola bars or other shelf stable things that I keep here in the Whine Cellar. Eventually, if I ever get the backpay from my disability claim, I'd like to have a kitchenette put in here on the bottom floor and there's a perfect space for it. One day... But for now, I avoid stairs like the plague!

I can walk but I can't walk far. To give you an example... if I go to the grocery store for an average sized grocery trip, by the time I get back to the car I'm in a good bit of pain. On days that I go to the store that's pretty much my ONLY activity for that day. I would never attempt to take a shower AND go to the store on the same day because the combination would be too much time up and around.

I can't stand in one place. The instability of my spine is such that when I stand still there are nerves that are compressed and it doesn't take long for me to lose the feeling in my feet. It's better if I can lean on something but it still gets uncomfortable fairly quickly.

I can't pick up anything heavy. Technically I have the strength to pick up things that weigh up to twenty pounds but it immediately results in pain which doesn't go away for several days. Today I picked up Austin's girlfriend's baby and... that did it. (It was totally worth it, though!) I can't do any repetitive lifting. I can't carry anything of significant weight for any distance.

Because I can't sit without pain, I can't go out to eat or to church or to a movie... without being extremely uncomfortable. There is a part of me that feels like if I was a better Christian I would suffer through the pain to go to church. The reality of it is that there is a threshold of pain that once crossed, I no longer hear anything around me, I can't concentrate, I can't articulate... I really am not there. There may come a time when I give it another attempt but for now... I'm homechurched.

Fear of pain drives a lot of my behavior. Even on days when the pain is better and I really *might* be able to go somewhere or do something, the anxiety of being uncomfortable and the desire to remain comfortable on a rare "good day" makes me reluctant to do anything. Being unable to do things both because of the financial restrictions of not having an income and the fear of pain is isolating and depressing. My social skills are really rusty and I'm much more awkward than I used to be.

If you are still reading, thank you. If you have someone like me in your life there are a lot of things you can do to make life easier for them... in my case, I'm very fortunate to live with my parents and to have a dad who loves to cook. When it was still just me and Austin living on our own we ate a lot of cereal and frozen food and take out food. During that time there were a few times that people brought meals to us and that was a huge, huge blessing! If you know someone who struggles with pain, take them a meal every now and then! I love when the fam goes out to eat and brings me something home. If you're going out, why not drop off a doggie bag for your friend? For about ten bucks you can pick up a rotisserie chicken and some sides. Make an extra lasagna. Share some of that batch of chili you made. It's easy and I wish I had been more sensitive to this when I was young and healthy!

I can't pick stuff up off the floor. I can't sweep/mop/vacuum. I can load the dishwasher some days but other days it hurts to do the bending. I can't stand for a long time to chop/prepare food or to keep vigil on a pot that needs watching. I can't lift the crockpot. I can make my bed and I can do laundry as long as I don't have to tote the basket (but I almost always end up toting the basket of dirty clothes because Austin is usually not around when I'm ready to do laundry). I can't take out the trash. Bending over to scoop out the litter box hurts like the dickens but I do it when I have to. (Like when one of the old cats leaves a little offering in the middle of the night smelling up the entire Whine Cellar). I've never been great at housework but if it's your gift... stop by and run a vacuum if you have a friend in need. Offer to take out their trash. I don't know what I'd do without Austin, even if he does need a litter prompting every now and then...

Over the past three years I've really dropped out of view. I'm so grateful to have access to the internet so that I can keep in touch with folks. If you have a friend that you haven't seen in awhile, maybe check in on them... go visit them. I'd never classify myself as a "shut-in" because in my mind that's an old person in a hospital bed who needs help going to the bathroom but honestly, other than the grocery store, pharmacy, library and doctor's office I never go anywhere. I miss three-dimensional people. I'm not always good company, especially if it's a more painful day but I would love to see people. I bet you know people who while maybe not shut-in, aren't able to get around great. Stop by and say hello to them.

If you have a loved one who can't do much, why not do what they can do? Go with them to the grocery store. Or the doctor's office. My friend Stasha knew that I didn't feel like doing anything except work back when I was working so she would come have lunch with me. I had to eat! It's the person that matters, not the activity. The most mundane things are better with a friend.

And if they say they don't feel like doing something, don't push. There are times that I hurt but I get tired of telling people I hurt or explaining exactly what hurts. I had a mother-in-law who famously had migraines any time she was supposed to do anything. Back then it felt like a cop out but now I realize it was probably, at least some of the time, legit. People who live with pain feel bad enough about themselves because of what they are missing out on... try not to add guilt to the equation for them.

Most of all, just remember that we are not all the same. Try not to judge. You can't feel what anyone else is feeling. You can't walk in their shoes. I was really down on myself a short time back because this lady who was dying of cancer was doing more than I was doing. Of course... she was probably on better drugs... but we can't compare pain. You just can't know what someone else is going through. Unless you're the person working on their disability case or somehow supporting them, it's not your job to figure out how legitimate their illness is. I used to try to Nancy Drew alleged situations to determine if people had the right to complain. Why? I don't know. There is nothing to be gained by failing to extend compassion. There is nothing lost in extending compassion, even if the person is not deserving. Even if they're not entirely legitimate, ESPECIALLY if they're not legitimately hurting, there's something missing in their life that leads them to have to use illness as shield/crutch/way to attract attention or whatever.

This is far too long but I hope it's been helpful in some way to you. Thanks for letting me put all that out there. I'm about to do a short blog entry with some other non-related stuff. Love and hugs, y'all!


monique said...

Hi, I read the entire post. Long and short. I didn't even notice the ads. I think I'm immune to them as probably most people who read anything on the internet.
I understand and can relate to a lot of what you say and feel. I hope your disability is approved. You have this blog for documentation.
I'm watching some of the Olympics but I hate how they show you more than one type of competition at a time. I would like to see an hour of ice skating not interrupted by snowboarding and skiing.
I like your haircut. You have such nice thick hair and that cut does it justice.
Oh...I love the pics of the lake. Awesome. Winter is not over for sure.
Yep, this comment is all over the place but it covers the past week or so.
Nite nite-