Monday, June 10, 2013

It's alright to have an "It's not fair" moment

 
Those of us living with chronic illness and pain know how important it is to 'focus on the positives' and have 'an attitude of grattidue'. We hear it all the time. We read about it, we write about and we talk about it. We're experts at making chocolate cake from lemons. When you're diagnosed with a chronic illness you learn pretty quickly that in order to survive and thrive, you cannot constantly dwell on the unfairness of it all.
 
However, just as it's necessary to adopt a positive outlook, it's also healthy to acknowledge that chronic illness damn well sucks. No one should have to suffer and live in constant pain. Yet, we're often confronted by do-gooders telling us "It could be worse;" an annoying, ignorant and insensitive platitude. Saying "At least you don't have cancer" is one that really gets my goat. Telling us that we could have it much worse when we're in need of some comfort, support and understanding is a kick in the guts. It's like telling a depressed person to cheer up and just get over it, and many of us dealing with chronic pain on a daily basis are depressed.
 
It's no wonder that those of us with chronic illness feel guilty for having a bad day. It is not hard to see why we beat ourselves up for having an "It's not fair moment."
 
There is power in getting along side somebody and agreeing that their hardships suck and aren't fair. I know I feel better after hearing "That sucks, it must be really hard, I think you're doing a great job." Just because someone else has it seemingly worse doesn't mean that they are not suffering and hurting too.
 
Don't get me wrong, there is a time and place for perspective. I'm not saying that we don't sometimes need an encouraging reminder to stop and smell the roses. There are many times when I spare a thought for those suffering more than me, and I am incredibly thankful that things aren't worse, but there are those times when you just want to scream: "IT'S JUST NOT FAIR!"
 
Heck, I've had a lot of these moments lately.
 
{now this is wisdom}
 
A couple of weeks ago I decided to try wearing my social butterfly wings again, and boy did I physically suffer for it. I spent days feeling extra unwell. I was green with envy that others were oozing with energy and could just get up the following day and function perfectly. So many "It's not fair" thoughts swarmed around in my head. It's not fair that I can't have much of a social life. It's not fair that when I do go out and enjoy myself, I pay for it. It's not fair that when I need to meet new people and make friends the most, I can't.
 
It was just the other day when I came home from an appointment feeling sorry for myself. I was frustrated and the hope tank was verging on empty. Since January I've been having problems with constant teeth pain and headaches. I just thought I had a sinus infection, yet here I am in June still struggling to manage the pain. After six weeks on antibiotics and a clear CT scan, the pain was just put down to migraines and I was put on a new drug. This new drug took the edge off the pain but unfortunately exacerbated the fatigue, and made me depressed and anxious. A couple of months ago this drug stopped working as effectively, so my doctor decided that it was best to try and double my dose. I only lasted one day. It was just too hard.
 
Now, my doctor wants me to go back to the dentist (even though I had dental problems ruled out five months ago) for a second opinion to see what they suggest I do now. I stuffed my face with chocolate in the unfairness of it all. It's not fair that I still don't have any answers. It's not fair that I keep getting loaded up on drugs that have just as debilitating side effects. It's not fair that I'm expected to function like this. Why have I all of a sudden developed a constant headache and teeth pain? The problems I had were already enough to deal with. Why me? Why now? Why, why, why, why?
{Damn right kiddo, damn right.}

When you're going through a tough time it's alright to have an "It's not fair moment," to think or say,"Why did this have to happen to me?" - It's human nature. Chronic illness is hard. Really, really hard. It stinks like elephant poo. It just isn't fair. It's not wrong to be down in the dumps about it. It's okay to have a cry about it. It's okay to not be okay. It's okay to vent every now and then. Write out everything in a journal or blog post and don't edit your feelings. It's okay to have bad days. It's okay to feel negative and hopeless- just as long as you don't stay there.
 
It's a positive thing to talk about your pain. It's a positive thing to purge yourself of the "It's not fair" feelings instead of stuffing them down and pretending that everything's just peachy. Give yourself permission to say "It's just not fair" once in a while. Chronic illness sucks, and no one should be shamed for saying so.
 
 
 

19 comments:

Karen said...

Well said...I, too, try to remain positive, but have the occasional INF (it's not fair) moment. It SUCKS that anyone has to go through chronic illness, but it's kind of comforting to know we're not alone.

BTW, have you tried Fioricet (a compound of acetaminophen, butalbital and caffeine) for your headaches? My doc just recently put me on this medication (after 6 years of a constant headache ranging from "bad tension headache" up to "please kill me now"). I have been prescribed so many different meds & this one actually makes an appreciable difference!

I hope you can find some relief SOON... And thank you for your posts.

Bless you, Sister!

Charity said...

That's amazing that med works for you! It totally made my head feel like it was going to explode and implode all at once while on fire with knives being jabbed in it!
I can't do ANY form of caffiene, even chocolate is starting to give me migraines :(

Karen said...

Human physiology is so WEIRD! What is a God-send for one person is Kryptonite to another =oP Yet another INF moment... =o)

fibrofaery said...

I love your blog SO much! You're such an inspiration! :)

Just wanted to let you know I nominated you for the Versatile Blogger Award over on my blog,

Have a wonderful day,

Chrissy x

Tamara Epps said...

This post is so true. I'm sorry to hear you're going through a rough 'patch', but it sounds like you're dealing with it incredibly well. Hugs and cupcakes x

phylor said...

Depression and pain have kept me from reading and commenting on all the blogs I like, am inspired by, informed by etc.
I agree -- it's just not fair. The "why me?" with the fist shaking.
Sorry you're in a inf period. Hope that something can be done about your "new" pains.
Hang in there and soft, gentle (((((hugs)))))

thingsthatgivemeaheadache said...

I agree that it is so frustrating when people say things like, "At least you don't have Cancer." Yes, Cancer is bad. But at least it is often eradicated. Many chronic invisible illnesses cannot be eradicated and we get to deal with them forever.

Deborah Bolton said...

Gosh! I'm not the only one that occasionally stuffs my mouth with chocolate or chooses to make chocolate cake out of lemons. I love your blog. It makes me want to rework mine, but that might be too much work. "but there are those times when you just want to scream: "IT'S JUST NOT FAIR!" As I lay in bed last night, not finding any spot that felt comfortable, I cannot remember what it is like not to hurt. I have hurt so long, I ignore it sometimes; but then, there are days or nights I think it is not surprising I never feel wholly good. There is more, but now I realize, you probably have gotten my blog post gene going and I have to feed it today -- sometime. I just want you to know, I recognized me in you. Thank you for writing this. It is so weird we find comfort in "shared Pain."

climbingdownhill said...

I'm not a medical professional, just another ailing body, but... There's something called trigeminal neuralgia that affects the nerves in the face and can feel like mouth/teeth pain. I wonder if one of your conditions might have that symptom. Hope you get some relief soon.

Miss Chronically Creative said...

@Karen- It makes me so sad to hear that others are suffering so much, but like you said, it is incredibly comforting to know that there are others who truly do get it with no explanation needed.

I have never heard of Fioricet. Thanks for giving me something to research.

They are trialing me on nerve pain medication now. Whether it works or not will determine what specialist I see and what tests they do. So far it has only helped slightly.

Blessings right back at ya!

Miss Chronically Creative said...

@Charity- That's so frustrating! I hate that about meds. I totally understand. My specialists are adamant that my drugs aren't causing my symptoms- I'm getting angry about them not understanding that medications affect everyone differently. Just because one person doesn't have a side effect dosen't mean someone else won't!

@fibrofarey- Thank you so much, Chrissy. I will be sure to pop bye. x

Miss Chronically Creative said...

@Tamara- Thank you hun. Hugs & cupcakes right back at you.

@phylor- Same here. It sucks. I also haven't been able to blog as much as I used to. I appreciate your comment, it's very comforting.

Miss Chronically Creative said...

@thingsthatgivemeaheadache- Exactly. People don't realise that cancer is a chronic illness, just like Fibromyalgia & CFS is. Invisible illness ain't for sissies. There are some days when I find it so tough that I think having cancer would be easier to deal with. Anyway, that's for a whole other post.

@Deborah Bolton- Haha, you're a legend. Aww, thank you! Yours is great, I really love your latest post. I must share. I so relate to your feelings. I am right here with you. Thank you for taking the time out to leave me a comment.

Miss Chronically Creative said...

@climbingdownhill- Sorry you are in the chronic pain boat too. Thank you for suggesting that, I've never heard of that condition before. I did some googling and I don't think my symptoms really fit with it, however, both my dentist and GP this week have mentioned it could be a possibility, so you could very well be right. I now have problems with numbness and tingling so I've been put on nerve pain medication while I wait to see a specialist.

Lovely to hear from you.

phylor said...

I hesitated offering up another possible cause for the dental pain separate from the headaches. I didn't want to get you even more saying "It isn't fair! But as you still don't have answers to your head pain, I should mention that unfortunately there is a syndrome (atypical odontalia, also called phantom tooth syndrome}, whereby a tooth or teeth hurt as if abscessed, or have a huge cavity. These are teeth that are fine, from the dental perspective. My worst tooth is on the left side of my face where all my pains converge.
I didn't want to mention it at first, but thought I would pass this along. I have it which means my teeth hurt, the worst is one that has been root-canaled and looked at by a dentist who specializes in the harder dental problems.
I hope you don't have this syndrome -- the nerve pain meds I take don't help -- though some studies link the pain in these teeth to an over firing of the nerves that run to the tooth/teeth. Perhaps they will come up with a new med/procedure to have this cleared up.
It would be good if you had a special full mouth xray done by dental specialist. You stand up and the machine makes a circular, very detailed xray that reveals everything, including the osteoarthritis developing on the right side of my jaw.
And just another thought, the pain in my face is caused by nerves in my neck. The actual spot in my neck doesn't hurt -- the pain is referred to my face. The nerve medication might work. I take Lyrica for my facial pain -- it doesn't stop the pain completely, and I have other pain issues in the close to same area as my worst tooth and sinus pressure. Lyrica helps with my nerve pain (except for the teeth) and I have some breakthrough medication.
I really hope that you get answers. My face started hurting out of the blue in 1998, and I didn't have any one, even my dentist, tell me about referred pain. I found that out in 2005.
A lot of people have trouble with Lyrica -- the side effects, etc. I'm fine with it and have cut back my dose as this area of my face has gotten much painful and I can't separate what is causing this. I'm stopping, gradually, some of the other meds I take (including something to stop the spasms in my neck).
Sorry to be the bearer of bad news. The spot on my neck was about 1/2 way down on my neck. When the pain doctor pushed on that spot, it hurt so much I actually screamed!
So, there are other options for diagnosing and I thought I should suggest some other possibilities that are depressing but might be helpful in getting answers to your questions.
PS: the parcel never arrived -- that's why I haven't thanked you!
Glad you are getting some of the recognition you deserve for a wonderful blog that addressed spirituality, creativity and dealing with a lot of "it's not fair" issues!
(((((hugs)))))

phylor said...

I hesitated offering up another possible cause for the dental pain separate from the headaches. I didn't want to get you even more saying "It isn't fair! But as you still don't have answers to your head pain, I should mention that unfortunately there is a syndrome (atypical odontalia, also called phantom tooth syndrome}, whereby a tooth or teeth hurt as if abscessed, or have a huge cavity. These are teeth that are fine, from the dental perspective. My worst tooth is on the left side of my face where all my pains converge.
I didn't want to mention it at first, but thought I would pass this along. I have it which means my teeth hurt, the worst is one that has been root-canaled and looked at by a dentist who specializes in the harder dental problems.
I hope you don't have this syndrome -- the nerve pain meds I take don't help -- though some studies link the pain in these teeth to an over firing of the nerves that run to the tooth/teeth. Perhaps they will come up with a new med/procedure to have this cleared up.
It would be good if you had a special full mouth xray done by dental specialist. You stand up and the machine makes a circular, very detailed xray that reveals everything, including the osteoarthritis developing on the right side of my jaw.
And just another thought, the pain in my face is caused by nerves in my neck. The actual spot in my neck doesn't hurt -- the pain is referred to my face. The nerve medication might work. I take Lyrica for my facial pain -- it doesn't stop the pain completely, and I have other pain issues in the close to same area as my worst tooth and sinus pressure. Lyrica helps with my nerve pain (except for the teeth) and I have some breakthrough medication.
I really hope that you get answers. My face started hurting out of the blue in 1998, and I didn't have any one, even my dentist, tell me about referred pain. I found that out in 2005.
A lot of people have trouble with Lyrica -- the side effects, etc. I'm fine with it and have cut back my dose as this area of my face has gotten much painful and I can't separate what is causing this. I'm stopping, gradually, some of the other meds I take (including something to stop the spasms in my neck).
Sorry to be the bearer of bad news. The spot on my neck was about 1/2 way down on my neck. When the pain doctor pushed on that spot, it hurt so much I actually screamed!
So, there are other options for diagnosing and I thought I should suggest some other possibilities that are depressing but might be helpful in getting answers to your questions.
PS: the parcel never arrived -- that's why I haven't thanked you!
Glad you are getting some of the recognition you deserve for a wonderful blog that addressed spirituality, creativity and dealing with a lot of "it's not fair" issues!
(((((hugs)))))

Aubrey Appleton said...

Emily you are so sweet and I love reading your entries! I just came across your site a few days ago, but I can't stop reading. I love how passionate you are about baking and your other hobbies. I don't have fibro me/cfs, but I do suffer from chronic back pain and a rare heart condition, and I'm only 20 years old. I have scoliosis and had the spinal fusion (2 metal rods and 22 screws down the spine) 2 years ago to treat it.(my spine literally looked like an 'S') Last year I had some of the metal removed to try to eliminate the pain I was having. It worked for a few months, but then the pain came back stronger than ever. Doctors are running out of ideas for treatments now because it is extremely rare for people to have this much pain after surgery because the surgery is supposed to be the cure(for scoliosis). I deal with it pretty much 24/7 and I don't remember the last day that I wasn't in pain. I know my condition probably doesn't compare, but I totally get being frustrated and wanting people to understand. I often find myself thinking "it's not fair" Looking fine, being brave on the outside doesn't take away all the pain. If only people could experience a chunk of this pain, it would be easier to talk to people about. I envy people that are pain free or their biggest pains are hitting the arm on something. I have really been struggling with wanting to give up after numerous treatments not helping, but then I came across your blog and it kind of changed my mood and made me look at things differently. So, I just want to say thank you for sharing your story. So many things you have written, I have thought myself. You've also helped inspire me to start a blog of my own :)

I wish you all the best with your illnesses. They may be a huge part of your life, but you still manage to live as happy a life as possible. Thank you for your inspiration.

Miss Chronically Creative said...

@phylor: I'm so sorry that you have to deal with all of that- it's an awful lot. Thank you so much for sharing that info with me, I really appreciate it. I've seen a specialist dentist now who has recommended splint therapy at night. If that doesn't help they think it's just one of those weird fibromyalgia/chronic fatigue things that they can't fix.

Ps. I'm about to email you about that parcel, I'm still working on it.

Miss Chronically Creative said...

Hi Aubrey. So sorry for the late reply, I've been struggling to keep up with all this blogging stuff lately. Thank you for your kind words- I'm truly touched. I cried when I read your comment. Pain is pain and your story has encouraged me greatly. I really admire your courage and honesty, and I am absolutely thrilled that you have chosen to start blogging!

I'm so glad that you've been able to relate to some of my posts- sometimes I'm scared to hit publish because I'm afraid they won't make sense to anyone. Blogging has been hard for me lately, but you've given me some much needed motivation to keep writing, so thank you!

Love & cupcakes x

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