Being Thankful in the Midst of Chronic Pain.

November is a month (typically) filled with posts of gratitude and daily updates on what people are most thankful for, but when you have chronic pain/illness Thanksgiving can be very difficult.

I am not going to sit here and say that being thankful is easy… it is NOT. I’m lucky enough to have things in my life that keep me grounded and that I am extremely grateful for. But more often than not I feel quite the opposite. I grumble at the prospect of another medical test, I moan about how desperately I want to eat the foods I used to be able to eat, and I cry for the life that I “should” have had before my body rejected me. I don’t like feeling this way, but I recognize that it is my human nature to want something better than what life has given me.

I used to suppress that part of my personality. I would always put on my mask of gratefulness and fake my way through life. There are a lot of times I still have to do that (I work in customer service, I have no choice), but I refuse to be an artificial version of myself with those I care about. They deserve better and so do I.

Some people can’t take it. There are people that look at me and all they see if that bubbly girl that used to have so much life! Now I’m always so “cynical”, when did this happy person get so cynical?! A- I’m not, I just roll with what life gives me. If life gives me one piece of crap after another, I can’t be held responsible for my attitude. B- I have always been this way, now I’m just not faking my way through my day.

Does that mean I’m never grateful? No, of course not. As I said above, I have so many things to be grateful for and I am, very much so. I just find that when in constant pain, it can be difficult to express properly. Just typing a daily “today I’m thankful for…” post feels empty. I’m in no way saying people shouldn’t do those posts! If that is helpful for them, go for it. For me, it’s just another thing I have to fake my way through, I can’t do that anymore.

Every day my gratitude is expressed in the things I do, not in the words I say. I tell my kids how much I love them. I thank my husband for all he does for me on a daily basis. I work until I can hardly stand it anymore, because I love my job and I appreciate the opportunities it provides me. I do whatever I can for my extended family, because they’ve done so much for me.

I’m blessed to have people in my life that care about me, I know this. I wish everyone could experience that love. I also have pain, I do not wish that pain on anyone… ever. So when I say I’m grateful for anything, it is huge. Monumentally huge! My body is literally fighting me, every single minute, of every day. I will not make empty promises, nor will I pretend to be grateful for what I do not have.

For those that do not have someone in your life that helps you, there is still hope. There will always be that one thing to get you through. Simply find it. Grasp on to it and do not let go. Don’t let anyone push you to be anyone or anything you’re not. If you’re in pain, never let anyone invalidate that feeling. You’re allowed to express how you feel! You are important. You. Are. Important!

Finally, I am thankful for you… really.

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What does “Ableism” mean to me?

Ableism (officially means)- a set of practices and beliefs that assign inferior value (worth) to people who have developmental, emotional, physical or psychiatric disabilities. But what qualifies anyone to asses these “practices and beliefs”? How has it that ableism has gone unchecked for SO long? This is more than just discrimination against disabled individuals, this is about able-bodied people going out of their way to find fault in our disabilities.

It may not seem like it, but one of the worst forms of ableism is unwanted/unsolicited help. “Help” is a very vague term; sometimes it can mean physically helping someone with a difficult task, this is not the kind of help I am talking about (although there are cases it can be the case). I’m talking specifically about the times that able-bodied people suggest they are helping someone with a disability by giving them “advice” (whether we want it or not).

Let me make this VERY clear… not ONE case of invisible illness is exactly the same. NOT ONE! So, we don’t care if you know someone else with our condition that magically got better (insert enormous eye-roll here), or if you read an article one time that said if we did……. all our pain would disappear. You’re not helping! It’s ableism, whether you are meaning to or not. You’re assuming to understand how we feel, but you don’t, you can’t.

So, how does this factor in to the official definition? Perfectly, that’s how. Unwanted/unsolicited advice is both a belief and practice (on the part of the advisor), because they’re assuming the disabled person does not have the ability to properly care for themselves. When in fact, most people with disabilities are significantly more versed in their illness than most doctors (not necessarily specialists, but it can feel that way sometimes). When anyone without disabilities suggests that they “understand” what we’re going through and offer advice for potential cures, it is like a knife in the back! Unless you are my doctor… I don’t want to hear it!

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Another significant issue is people asking if we’re feeling better. No, we’re not and that’s a horrible question! Better than what? Better than when? We’re used to the common “How are you feeling?” it sucks and we have to lie every time, but at least we have an answer for it. Some of us completely lie and say “I’m ok” or “Good”, others say “Fine” and leave it at that. Personally I’ve found that saying “I’m here” is a good way to stop the conversation, without making anyone too uncomfortable. But when someone asks “Are you feeling any better?” I cringe! It’s ableism to assume that I will get better at all. “But don’t you WANT to get better?” I do, of course! But I have an incurable disease… this is not up for dispute. Think before you speak.

If we want to complain, we damn well are allowed to complain! If any able-bodied individuals out there think differently, see ya. Does this mean no one else can complain about anything else, of course not! But do NOT compare your headache to my chronic migraines. Never compare your back pain to my dislocated ribs and curved spine. Don’t say “I know how you feel” until you’ve been diagnosed with something comparable. Period.

I’ve been a little harsh today, more so than usual, but for good reason. The disabled community deserves to be heard and have our rights upheld! Let’s put an end to ableism!!!

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Sometimes the Pain is Just Too Much

So, it’s been a few weeks since my last blog post and I apologize for that. I have had a lot going on in my personal life, but more than that, I have been suffering. I’ve tried to do too much and my body is reminding me why that’s a bad idea. I’m tired. I get a lot of rest, but I’m physically, emotionally, and spiritually tired.

This week is my husband’s 40th birthday, and I wanted to make it special. We don’t celebrate our birthday’s. We have kids… they get parties, not us! But for his 40th, I wanted it to be different. So I set up a very small surprise party, just close family and a fun theme (Lord of the Rings, “Over the UnderHill”). I thought by keeping it small and not going crazy with decorations, I wouldn’t be over-doing it. I was wrong. I’ve spent the last few days practically bed-ridden. It was a fun party and he was surprised, but I have a feeling my days of party planning are over. Which is tough for me, as I LOVE to plan parties! Things may be different once I get my electric wheelchair, but I just don’t know yet.

I also had my 20 year high school reunion a couple weeks ago. It was quite fun and I’m glad I went, but (once again) I over-did it. I took a manual wheelchair (as an electric one was too expensive to rent) and my arms were killing me by the end of the night. Also, the back of my legs hurt horribly! How do people sit in those things without thick cushions? Now I know better! Add to that travel time in the car and sleeping (well, attempting to sleep) on an unfamiliar bed, it was another several days before I “recovered” from that trip.

I’ve started several blog posts within the last few weeks, but nothing has felt “right”. I’m not sure why. I wish I did! As many of my followers know, pain is so much more than just physical distress. These past few weeks, I feel like my pain has engulfed me. I hate that feeling. I’m supposed to be the one helping people through their pain, not hiding my head in the sand whenever I struggle with it myself. But the reality is that I have chronic pain, I’m going to have days and weeks like this. I know that! I also know that I cannot let it drag me down.

So, for all of you out there saying to yourself “No one could possibly be feeling this way!” I hear you! I am there with you! You are not alone!

I’m not going to say the cliche answer of “Just think positively and don’t let the pain win.” That isn’t helpful, I know that. It may be a true statement, but it’s not what we need to hear. We need to hear that people are there for us THROUGH the pain! We need to know that our support system believes our pain is as bad as we say it is. Unfortunately, it doesn’t always work that way.

My hope and prayer for you today is that everyone reading this has someone in your life that understands your pain, and supports you unconditionally. Never take that for granted. (((gentle hugs)))

Is Giving In… Giving Up?

For months now, I have been on a steady decline and that is saying something, because I was already not in very good shape. I’m not saying this to elicit sympathy or prayers, it is simply a statement of truth.

I’m going to go on a little detour from my main post topic for one second to address my last sentence there, because as soon as I wrote it I realized this has to be said. Please let people talk about their health without feeling like you HAVE to comment on how sorry you feel for them or that you will keep them in your prayers. Now, I am a Christian (see my post called “Faith in the Midst of Pain“), but there are times I feel like I can’t vent about how I feel because I know it will just be taken as a solicitation for sympathy. It’s not! Pray for me, by all means. But when a friend with invisible illness is talking to you about their symptoms, it means they trust you… a lot. Don’t break that trust, don’t make them feel like what they’re saying should be pitied. Ok, back to what I came here to say.

Is giving up, giving in? The short answer is no, but (as we all know) there is no such thing as a short answer (well maybe 2+2). My point is that, there is almost always more to the situation than just saying “Don’t give up, no matter what!”. Here’s an example…

When I got married just over 15 years ago, my husband and I were living in San Antonio, TX. We loved it there, and only moved because of job opportunities and family. If it were just for location alone, we would still be in Texas. Anyway, we honeymooned in the Hill Country and it was beautiful! Not far from where we were staying there is this huge rock, the size of a giant hill (but a rock). It’s a big thing to climb this rock, there were hundreds of people there (like all the time) walking, crawling, and climbing up this thing. Well, up until this point I still didn’t know I was sick. All I knew was that I had back problems, headaches, and that I most likely had carpel tunnel (the only explanation my doctor could give me for my wrist pain). I also knew I had asthmatic problems, but had never been diagnosed and was therefore never given an inhaler. So climbing this giant rock was NOT high on my list of things I wanted to do on my honeymoon. But my new husband really wanted to do it, and he thought it would be a romantic thing to do together. It. Was. Not. Less than half way up I started hurting. He decided to try different motivational techniques, like cheering me on and even negative reinforcement (I put a stop to that one right away). Eventually I made it to the top, but it took several hours. I was in so much pain by that time I had learned something about myself… it doesn’t matter how much someone is trying to motivate me, I can only do what I can physically do. Period. I should have given up. I should have stopped and gone back down as soon as I felt the pain searing through my body. But I didn’t, I allowed myself to be pushed and because of that I had to be (practically) carried down the rock and back to the hotel. I spent the rest of the honeymoon miserable. I don’t blame my husband! He was only doing what he thought was the right thing to do, neither of us knew about my chronic conditions. If we did, we would never have even attempted to make the climb.

So now I’m faced with another rock to climb… mobility. My legs are losing the battle and even though I can walk, if I have to walk for long periods of time, I’m laid out for at least a day (often more). I know that I will have to have a serious conversation about this with my doctor at my next appointment, but I have other people pushing back. I get everything from “You’re too young for a wheelchair!” to “I’m just going to believe that you’re going to get better!”. These are not helpful. Of course I want to “get better”, but reality dictates I look at facts. The fact is that things are going to continue to get worse. I am not just giving up! I will take my vitamins, I will do my physical therapy, I will be an advocate for my disability rights. Getting into a wheelchair is not giving up on myself. It may be giving in, but not giving up.

There’s Simply No Excuse.

We’ve all seen them, those inspirational pictures and stories of people who have endured great odds to become successful. People with disabilities, but still managed to overcome and win a sport or defy expectations. These are often (ok, pretty much always) followed up with the phrase “What’s your excuse?” and I’m here to say, “Who are you to ask?”.

Some people may find motivation in that medium, but most of the disabled community find it demeaning. Think about it. Unless you’re looking in a mirror, you have NO idea what that person goes through every single day. There are some amazing people out there with disabilities, that do incredible things with the hand that has been dealt them, but to judge others lives based on what how those people live is not doing anyone justice. Here are a few examples.

Morgan Freeman has Fibromyalgia. Many people do not know this, but it’s true. He has said that after a car accident, tendons in his arm were so badly damaged that he could barely move and the Fibromyalgia developed as a result. So, how can he still work and make insanely incredible movies when other people with the same condition complain about even working? Because no two people are the same! He has different symptoms and I know for a fact he uses his pain in his performance. He also smokes a lot of medical weed, he has made that very clear in interviews. It’s his main medication and it works.

Rick Allen (the drummer from Def Leppard, you know… he’s only got one arm). Seriously, I cannot tell you how many times I have heard this one come up! “Well, if Rick Allen can do it, I bet you can too.” Yeah, well I am not Rick Allen. He’s a unbelievable talent and how he does is frankly beyond me, but saying that anybody can do anything just because someone can drum with one arm, is not motivating.

Paralympians. I have SO much respect for all the athletes at the Olympics! I cannot even imagine all the hard work that goes in to getting there. Especially for those competing in the Paralympics. Each and every one has obviously endured some amazing journey to get where they are, and there’s no doubt in my mind that most of them deal with pain on a daily basis (as do many of the athletes in the Olympics as well). That being said, each and every one of those Olympians/Paralympians are unique! Their conditions are constantly monitored by doctors and specialists. To suggest that another’s pain is less valid because someone with the same condition can win a gold medal, is degrading and disrespectful.

Elderly individuals that stay fit. I love to see senior citizens doing yoga, jogging, and lifting weights. I think we all do. It means they’ve either taken good care of themselves throughout their whole life, or they’re doing everything they can to add years onto their life now. This one means a lot to me. As many of my readers know, I recently lost my Grandmother. It was a difficult loss because we were at odds for many years and only recently became close. I miss her dearly and would give anything to see her up and running or doing yoga. I just cannot stand the images I see that say “85 years old… what’s your excuse?” and have an older gentleman with bulging muscles. Well, I’m 39 and I am now using my Grandma’s old walker. This is not a choice we make. I am not sitting around, eating bonbons, and just feeling sorry for myself. If I could do what these amazing people are doing, I would (maybe not the bulging muscles).

There are plenty of other examples I could add here, but honestly I will just get overly riled up and that won’t benefit anyone. This is an emotional topic for those of us with invisible illness, because we deal with a constant barrage of “motivational” images on a daily basis (especially on social media). We’re going to see it a lot more during the Paralympics, so I wanted to get this out there and make sure people really understood the true damage they cause. Now, there is no excuse for posting it.

 

The Positivity Police

“Just stay positive!”

“No one wants to be around a Debbie Downer.”

“When you have a bright outlook, nothing can look too dark.”

Shut. Up.

I know that being negative all the time is no fun for anyone, especially our friends and family. But there are some people who take it upon themselves to act as our positivity coaches, the one that’s going to pull us out of our “funk” (no matter the cost). Then it turns into a boot camp, instead of a counseling session. Every time they speak, the condescension oozes off of them like Slimer from the Ghostbusters. Guess what, I don’t need it! Surprisingly enough, I am a very positive person. If I were not, I wouldn’t be here.

Let me explain something very important (this is mainly for the able bodied people readers, but anyone dealing with chronic pain make sure to pass this along).

If we complained HALF as much as we felt like it, we would never stop! It would be 24 hours a day, 7 days a week. So, when we mention in any small fashion that we’re in pain, we are in extreme pain. Something different is going on that is over and above our typical pain, and it’s so bad that the barrier has been breached. It is to the point that something has to be said. If we don’t say it, we run the risk of everyone saying “Well, why didn’t you say something?!” when we end up in the hospital, can’t work the next day, and so on. So, do NOT blow it off as just another bout of negativity or complaining. It is serious, always!

To all the positivity police out there… stop it, please. I’m not saying to never pass on a positive message, we appreciate it! I’m saying, don’t expect us to never be negative about our condition. It is going to happen, and we have to be able to feel that. We are entitled to our feelings, as you are entitled to yours! My pain has forced me to see the world in a whole new light, and (even though I 100% believe in being positive) I just don’t need anyone else constantly telling me the best way to stay positive. Now, I’m sure I sound like a huge downer, I swear I’m not! I’m upbeat and tend to be a very strong person (I even pass along some of those positive messages on social media sometimes). My point in all this is when someone has chronic pain, the last thing they need is other people forcing a bunch of anti-negative rhetoric at them. Be an ally for people with invisible illness! Be there for them, don’t treat them like their pain is anything less than what it really is… horrible.