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4 Reasons I Say, 'I'm All Good' When I'm Actually In Pain

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When people ask me how I am feeling, 99 percent of the time I am lying. I often say “not bad,” because I feel it is slightly more honest than “good” or “fine.” I got sick of “fine. Anyway, I lie for many reasons.

1. I’m having a good pain day: They happen and I’ll say that I’m good, fine, not bad. I even feel like I can accomplish great things… in moderation. In which case, relatively speaking, for me I am not actually lying. This is a good pain day, it is not bad for me and I am fine with it.

2. I just don’t want to explain: I just don’t want to explain how crappy I feel and in which way I mean. Because I am tired of it. I just want to deal with it, without having to discuss it, mention it or have any sympathy expressed about it. Because it can be complicated. It may be a migraine with specific symptoms. Maybe it is a fibromyalgia flare, though. Or both. And then I have to explain what it is because most people think my migraines are the main issue but I could be fibromyalgia flaring like crazy or have severe allodynia. Also I don’t really want or need the sympathy. The ideas. The suggestions. I just want to get through the day.

3. I am straight-up lying: I feel horrible, but I want to get through the day. It isn’t going to help me or you if I say how horrific I feel so I just lie, lie, lie. No one can do anything. I can’t even do anything. It isn’t going to help anyone and certainly not me to say how horrible the pain is, so I lie.

4. I just want to cope easier: Sometimes it is easier to not talk about the pain and just cope with it. It is easier to smile and laugh and put on a façade to help myself cope. Swelling on the pain, at all, ruins this mental game I have going on, that I need, to get through the day.

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I don’t do this with family. I will tell them when the pain sucks. And half the time they can tell when it does. I feel more free to do so. I don’t have to over-explain. I don’t get all that sympathy business, just genuine caring for me personally. I don’t get weird advice. I also am at home and don’t have to “function” through the pain. I can just be Me in pain.

Functioning through the pain takes a totally different mindset. I have to consciously not dwell on the pain. I have to try and keep my humor up, because it helps with my mood and coping. I smile a lot because it literally tricks our brains into releasing happy hormones. I want to keep myself as free of my usual negativity as possible so I can cope with the amount of pain I am in and function through it. I want to deal with the stress of that as best I can with relaxation breathing and resting on my breaks. I try to maintain this atmosphere to trick myself into handling the pain well at work. Generally I convince myself fairly well.

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4 Reasons I Say, 'I'm All Good' When I'm Actually In Pain

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People With Chronic Pain Are Sharing Their Experience Taking Opioids to Fight Opioid Abuse Stigma

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People who use opioids to manage chronic pain are speaking up about their experience using opioids to fight the stigma against opioid users.

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33 Unfortunate Realities of Life With Chronic Pain and Illness

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You know that feeling you experience when you walk into a room and you can’t even begin to remember why you went there? That’s what it feels like to have brain fog due to chronic illness. On a bad day I leave behind a trail of unfinished tasks, deserting them to wander around my apartment for some reason that I simply can’t remember. I usually find my way back to the things I left uncompleted, looking at them through squinty, tired eyes and a haze of confusion. If not, then my husband will usually find strange evidence of my brain fog and fatigue throughout our home.

Experiencing brain fog (or fibro fog) is just one aspect of my chronic illnesses. There are almost countless other symptoms that have made their way into my life since I was diagnosed with early onset osteoarthritis and fibromyalgia. In this post, I’m going to candidly share some of the unfortunate realities of life with chronic illnesses and chronic pain.

The unfortunate realities of life with chronic illness:

1. Life with chronic illness means that taking care of yourself can be a full time job – one that people don’t always understand because it doesn’t come with a salary or 401(k).

2. It means you occasionally need help to get dressed, even though you’re only 26 years young.

3. It means learning new phrases like “spoon theory” (and then learning how to explain them to others).

4. It means having to instruct your completely “undomesticated” husband on how to do household chores, such as cleaning the stove top and putting away the laundry, because you can’t often finish them.

5. Life with multiple chronic illnesses means that a specialist might refuse you as a patient because you have a certain illness (fibromyalgia) despite the fact that you are asking to see him for a different one (osteoarthritis).

6. It means you can go shopping for groceries and cook a meal, just not on the same day.

7. Living with chronic pain frequently means having painsomnia – i.e., being unable to sleep because you are in too much pain. It also means being in more pain because you didn’t sleep, thus initiating the painsomnia cycle.

8. Life with chronic illness means you are often targeted by people who think they have the supplement, diet, or essential oil treatment that will cure you.

9. It means the pride you feel from having a productive day can be suddenly swept away by waves of pain because, actually, you did too much.

10. You’ll gradually learn that you need to rest before you go to a meeting, because if you wait until after than you’ll need twice as long to recover.

11. Life as a chronically ill person inevitably leads to unexpected, embarrassing situations that leave you at the bottom of an emotional roller coaster.

12. It means you might quit your job (or lose it). Then, since you don’t go to work every day like other people, you may find yourself defending your daily routine to complete strangers.

13. It means selling your guitar because you no longer have the grip and dexterity in your fingers to play it.

14. It means asking your spouse to do way too much for you.

15. It makes you laugh at inspirational sayings that you now find ridiculous, such as “Just do it” or “Pain is weakness leaving the body.”

16. It feels like your chronic illness(es) are trying to rob you of your health, your hobbies, your money (between health care expenses and possible loss of income), and even your mental health at times.

17. It means you have to learn coping methods for something that seems impossible to cope with (especially if you are young).

18. Life with a chronic illness means that you consider moving into an accessible house, because that is a reality of this new life you are living.

19. It means panicking when you go out by yourself, because you don’t know if you can manage the pain on your own.

20. It frequently means experiencing feelings of depression or grief over the way of life that you’ve lost.

21. It can mean being seen as lazy because you can’t handle physical activity.

22. Life as a chronically ill person can make you do things like push your limitations when you travel because you desperately want to make the most out of those rare times when you aren’t lying in bed all day.

23. It means needing two days to recover from an activity that doesn’t bring anyone else pain.

24. It means reading new books, watching new TV shows, and spending far too much time on social media because those are things you can do from the comfort of your couch or bed.

25. It means putting yourself first even when friends and family may misunderstand, react poorly, or become angry with you.

26. Life with chronic illness can mean shutting the door on things you would never have stopped doing if you had been given a choice.

27. It means deciding whether to live with the horrible side effects of your new pain medicine or the horrible pain you have without it. It can also mean going through the worst withdrawal of your life when you decide you can’t handle said horrible side effects anymore.

28. It means having to swap out cute flats for supportive sneakers.

29. It means that you have to be committed to your chronic sex life and find appropriate ways to push past your fatigue and pain.

30. It means bouncing from one support group to another, but it also means you’ll be incredibly grateful to finally find the one that is right for you.

31. It means having to rewrite instructions meant for healthy people for someone with chronic pain.

32. Sadly, it often means that you feel hopeless, inconsolable and lost.

33. But it also means that you’ve reached a new level of resilience. You’ve become a chronic pain warrior who knows what it’s like to experience a chronic pain win. Your illness has taught you how to prioritize the things and people that really matter to you.

Your periodic breakthroughs will make you remember who you are and why you keep fighting.

This post was originally published on My Meena Life.

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33 Unfortunate Realities of Life With Chronic Pain and Illness
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One Night Inside the Head of a Person With Painsomnia

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It’s 5:45 a.m. as I’m beginning to write this. While my mom’s phone is buzzing with alarms and I can hear the frantic noises coming from my neighbors who are probably getting up to go to school or work, I’m lying here, wrapped up in my blanket and thinking of ways to manage this terrible pain. I have had insomnia from ever since I fell ill, almost six years back and over time, it turned into painsomnia, a condition where you are unable to sleep because of physical pain.

This is nothing new for me because I spend nearly every night like this, waiting for the pain to pass, waiting for sleep to come.

Last night was the same. I lay in bed on time and have since been shifting and turning, changing positions in hope for the one that finally makes me fall asleep. Some nights it’s just insomnia without much pain, yet most of the nights from past few months have been spent literally wriggling in pain, sometimes groaning and crying and praying for Lord to grant me at least some sleep.

This night was no different. I lay in bed, burning pain travelling up and down my spine and radiating into my shoulders, arms and hands.

You must be wondering why I just don’t take some medicine?

You see, because I also have severe irritable bowel syndrome (IBS), taking almost all medicines causes side effects (and before you suggest, let me tell you that I have tried everything I could to help me fall asleep already).

And because I can absolutely not bear anything related to my IBS, I prefer to stay in pain most of the time. But there are days and nights (because we are talking about nights here) when I give up and take medication for my pain. It hurts in other ways but at least I get a couple of hours of sleep. Today, however, I am not doing it. I’m going to bear this pain because I’m not well enough to handle the side effects just to be free of pain for a few hours. It’s always a choice for me: to bear the symptoms or the side effects. It just depends on what I choose that day.

woman lying in hospital bed giving thumbs up sign

It’s difficult to be chronically ill in general, to be in immense pain and to have your body behave in a way you never thought was possible. But it’s even worse at night, when everyone’s asleep and you are curled up into a tight ball, clutching yourself hard as if trying to shove away the pain and other horrible symptoms.

As I lie here, I can’t help thinking about how different it would be if I was well; if I didn’t have to go through this; if I could just lie on bed and fall asleep instantly without my illness interrupting every few minutes to make sure I didn’t forget it.

Sometimes I feel like talking to my illness, like to practically seize it up and tell it that it has been living inside me for almost six years and it’s time now to go away forever and never once show its ugly face again.

I wish that was possible and that I didn’t have to spend tonight; every night struggling to stay sane, forcing breaths into me and trying to be quiet as I sob tearlessly into my pillow fearful of waking up my family and causing them unnecessary worry.

Even though they are the most caring people one could come across, I feel like I should let them take some rest given how they spend every minute, day after day taking best possible care of me.

The sun is beginning to come out and outside the window, sky is a mix of bright yellow and very dull blue. The constant chirping of birds and chattering of people is enough to let me know that another long night has passed without the tiniest hint of sleep.

It’s 6:14 a.m. now and I know this sounds like a diary entry more than an article, but I wanted to give a true account of how I struggle through endless nights wishing for sleep and peace.

I wanted to let you all know that you are not alone. If you are reading this while struggling in pain and wishing for a peaceful night, know that many others are, too.

By sharing this little account of my pain-filled night, I aim to let people know that millions of us are together. We are together in our pain, together in our nausea, together in our dizziness, together in our fights.

While it may seem like you are alone when you lie on your bed fighting painsomnia/insomnia, it is certainly not the truth.

We are all together.

With this, I would like to leave (well, because my pain is beginning to increase and so is my brain fog which has begun to clog up my head now, blocking any coherent flow of words).

I hope my little experience makes someone realize that there is someone out there, struggling just like them.

And I hope you know that you are never alone; that you will get through this; we will get through this.

Until then, one day at a time.

Oops.

One night at a time.

Find me @its_little_ayra on Instagram where I share my chronic illness journey and the ups and downs that come with it.

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When Pain Is the Only Thing Certain in Your Life

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I have been thinking a lot lately, perhaps a little too much – but I can’t help it. I am left wondering each and every day just what it is really like to experience a life that isn’t plagued by chronic pain or illnesses.

What is it like to not have to pick between the things you know will inevitably make you end up in bed for three days? Or the feeling of a fulfillment after a hard day at work, followed by a restful sleep?

The future for me and my health is widely unknown, which scares me more than I would care to admit. The only thing certain for me is pain; excruciating and debilitating pain. I turn 19 in two months, but I already feel half a century older than everybody else my age because I have been chronically ill for over half of my life.

I am not resentful for those who will never experience the extreme pain and fatigue that having multiple chronic illnesses ever so kindly gifts to you; however, I am awfully jealous. It makes me truly sad to know that I neither will nor can never grow out of this pain; nor will I never “get better.”

But I refuse to let the worst parts of me define the best parts of my being. I will continue to fight against my illnesses fight for not only my life, but my happiness and my dreams too. If I had one wish that would be indefinitely granted, I would never wish to be pain-free… I would wish for more awareness.

Nobody should ever have to go through life where every doctor has told them that their pain is “all in their head,” nor should it take half our lives to get a diagnosis to prove our pain is not an illusion created by our own minds. We should never feel so alone and isolated in our pain that we are forced into being silent. We deserve to create awareness for our own illnesses. We do not have to put on a “brave face” for the sake of someone else.

Although our illnesses are invisible – we will be heard. If we continue to share our stories and illnesses, we will have to be listened to.

Chronic illness is the hardest lesson to learn, but is the best teacher I have ever had. I am grateful to my illnesses for teaching me more about myself than I ever thought was possible, even though they were the hardest lessons I have ever had to learn.

I am exhausted and I am in pain, but I have learned that it’s OK to be frustrated with my body. But it is never OK to compare yourself to another person, especially a healthy person. You may never be healthy, but you are doing your best to continue to live as comfortable as possible with chronic illnesses. Sometimes that is an impossible task but you are doing amazingly well and I believe you can continue to do so.

No amount of pain ever has to define you. Although pain can limit you and prevent you from doing things in life, only we get to decide if we are defined by just our illnesses alone.

And no matter what, you are a fighter.

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When I Realized My Chronic Pain Meant I Could No Longer Have a Dog

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Over five years ago, in the midst of our divorce, we had to put down our beloved 12-year-old golden retriever, Lila. In many ways, it was every bit as difficult as the divorce itself. She was my confidant and non-judgmental friend and I loved her like she was my own child.

I knew that I eventually wanted to adopt another dog but I was concerned that I might not be able to manage the responsibilities of caring for one. Even with a cane, I’m not able to walk very far without exacerbating my leg pain.

However, it was the need for companionship that convinced me to give it a shot. Like most of us that live with chronic pain, we tend to think we can do more than is sensible.

After talking to veterinarians, friends with dogs and doing my own research, I decided that basset hounds had the kind of temperament that might work for my circumstances.

Fortunately, for me, there was a wonderfully caring basset hound rescue group in my area that made the adoption process incredibly easy. I told them what characteristics were important to me (housetrained, spayed, under 50 pounds, etc.) and, eventually, they matched me with Mabel.

It was estimated that Mabel was about 7 years old when she, and her brand-new litter of puppies, were abandoned by the side of the road. After her rescue, she lived with foster parents while she recovered physically, got microchipped and received her updated shots and treatments.

Finally, a transportation volunteer for the rescue group brought Mabel to me and I fell in love before the door shut. It immediately appeared that her primary goal in her short little life was to let me love her. Success!

However, it became evident after a few days that she was having trouble maneuvering around someone who walked with assistance. Whether it was going for a walk or even just getting around my apartment, Mabel would bump into my leg or my cane in a way that caused me to lose my balance, trip and often fall.

Of course, those of us with chronic pain know how that kind of trauma affects the balance of our day (#spoons) and the cumulative effect of those falls quickly amped up my pain to a higher level, leaving me virtually unable to care for her later in the day.

I kept telling myself that she would learn and we’d be OK, but I eventually realized that she was just being her doggie self and it was selfish for me to expect her to accommodate my disability. After all, it’s hard enough for some of our fellow humans to do it.

I heard about others who walked with a cane and had made it work with their dogs. I tried as many variations as I could think of to avoid the negative manifestations of her excitement, but I was tripping more and felt my agitation increasing along with my pain. That’s the trigger pet lovers watch out for – getting angry at your animal for something that’s not their fault.

I absolutely hate that Mabel will now have to make a transition to another home. Despite her brief time with me, I desperately miss her pressing herself next to me on the couch, even lying across my lap despite how much it hurt. I miss her little Elvis sneer and her silly dance when she knew she was getting a treat. And those eyes, oh my God, those sad basset eyes. My heart is broken. Again.

I honestly think this is the first time in my 16 years with chronic pain that I’ve asked, “why me?” If it’s possible, I’m angrier at my pain than ever for taking so much from me. If I can’t handle a dog as sweet and loving as Mabel, I don’t think I’ll ever be able to have another one. Once again, the pain that never takes a sabbatical has robbed me of another joy that I used to take for granted.

Be well, Mabel. You will always be with me.

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