Helping women with chronic illnesses
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It Stinks!

Let’s face it…

Chronic illness stinks!
Chronic pain stinks!
Giving up or limiting activities we once enjoyed stinks!

skunka

This post was inspired by my friend the skunk. Let me explain. This skunk has been in our yard frequently. (I live in the sticks, for those who aren’t aware). There is another skunk we’ve seen around too. While skunks have a bad reputation, they will not spray unless they feel provoked or threatened in some way. While some might view skunks as a major nuisance, they have been spending plenty of time in our yard peacefully lately. Check out this picture where Robin joins Skunk.

skunkz

My husband spotted this skunk last weekend and scrambled for the camera. I am so glad he captured this particular skunk. The other skunk we see is the more stereotypical black with just a little white. I had never seen a skunk with so much white as this one until recently.

In any event, when my husband came inside to tell me he had gotten pictures of this beautiful skunk, this blog post title came to mind immediately. (It’s now official. I can connect anything to blogging. Everything is somehow “bloggable”. In fact, I use the word “bloggable” daily now). However, I have to defend the poor skunks because they really don’t deserve their bad reputation. Granted, I doubt if there are many people more bothered than me by the smell when they do spray! However, like I said, they don’t spray without reason.

Now that I’m done defending skunks, let me just say that anyone suffering chronic conditions knows that it really stinks to be chronically ill! (Please forgive me, skunks, but you provided a nice visual).

skunkb

The question is do we dwell on the negative and focus on how badly things stink?

My personal take is that no matter how unfair, hurtful, upsetting, or life-altering our chronic conditions are… focusing on the negative in the form of pity parties isn’t helpful. This does not mean (in my opinion) we shouldn’t grieve our losses or shouldn’t experience the feelings triggered by our chronic conditions. In fact, trying to deny the feelings brought on by chronic conditions can end up adding to the misery. However… in order to avoid the pitfall of torturing ourselves, becoming bitter, obsessing over the negatives, etc., I believe we need to do what we can to best get through it.

How?

~~~

Here are some ideas (some of which you may already be doing):

Take advantage of online support. Some online support is reputable and some is pretty scammy. So be cautious but take advantage of the multitude of support sources on twitter, Facebook, blogs, online support groups, social networks (like ning), educational YouTube videos, etc. You’ll find some that are very helpful and others that are not. Be skeptical but also make use of the helpful info.

Advocate for yourself. Take an active role; create a partnership with your doctor(s). Research on your own so that you understand the medical terminology being thrown at you. Ask questions. Take notes at appointments. Be your own best advocate.

Read about your condition(s). Getting informed will help you in your healing journey.

Talk with others going through the same type of experience. It’s incredibly empowering to connect with others who “get it”! The validation can be particularly important when one has been dismissed by doctors, misdiagnosed, or given inappropriate medical treatment. Bottling things up isn’t helpful.

Recognize the importance of activities that induce relaxation. Some of these may be simple and free of cost and others may not but here are some examples of activities you may find very helpful: deep relaxation breathing exercises, progressive muscle relaxation exercises, meditation, listening to relaxing music, acupuncture, massage therapy… Relaxed muscles mean less pain.

~~~

So… having adverse circumstances such as being chronically ill and/or having chronic pain definitely stinks. Having to discontinue activities due to physical limitations stinks. Needing to limit activities stinks too. The question is what to do about it…

Woodchuck speeds by Skunk

Check out Mr. Woodchuck zooming by in the background

The question is, “will a pity party make it any better”? My answer is no. I think every patient has days or moments where the pity party mentality sets in and that is understandable. However, I believe that it’s a slippery slope that should be viewed with caution. I think allowing the pity party to take too strong of a hold can be destructive and hurtful to the patient and the patient’s love ones.

Does it stink to have chronic conditions? Yes. Can we learn and grow as a result of our chronic conditions? Yes. Can we sometimes turn a negative into a positive? Yes. Some of the nicest, kindest, strongest, most wonderful people I have met have a chronic condition of some kind (or several). Adversity really can make us stronger. By sharing information with each other, we can all be better off.

So, yes, it stinks to have a chronic condition. With all of the conditions I have and with how long I’ve been chronically ill (27 years), I have come to the conclusion that there is only so much I can control in relation to my chronic conditions. I can control following the instructions of my doctors, eating the foods my body needs, implementing self-care, etc. However, no matter what I do there will be certain symptoms that are out of my control.

I have concluded that I need to accept my limitations. That doesn’t mean I like it. However, if I accept my limitations then I’m not miserable all the time. This does not mean giving up. Not at all. I’m talking about being able to distinguish between what I can control and what I can’t.

So, yes many things are unfair and just plain stink. However, there is lots of support available from others going through similar experiences. So don’t try to go it alone. They are many kind, informative, helpful people who want to help.

“All the world is full of suffering. It is also full of overcoming”.

— Helen Keller

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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Reading: It Stinks!

14 comments

1 JasmineNo Gravatar { 06.23.09 at 9:20 pm }

Excellent post and quote! Taking on an active role when it comes to our health is vital, as well as finding support.

Jasmine’s last blog post..Understanding Invisible Illnesses

2 JeanneNo Gravatar { 06.23.09 at 9:25 pm }

Jasmine,

Thanks! It really makes all the difference, doesn’t it?

Jeanne

3 YayaNo Gravatar { 06.24.09 at 6:39 am }

Jeanne,
Another great post. Great analogy and awesome tips for ways to alleviate the emotional pain of living with a chronic illness. You’re right, having support is essential. I don’t know what I would have done if I had not found you after my diagnosing endo surgery. I was beyond depressed and then you came in and helped me beyond words.
Alicia

Yaya’s last blog post..Our Empty Rooms

4 EndochickNo Gravatar { 06.24.09 at 10:04 am }

When dr.’s seem surprised that my pain hasn’t depressed me (and I have my days when it’s just really bad and I allow myself to cry), I explain to them “what doesn’t kill me only makes me stronger.” If I allowed every little ache and pain my body felt from every chronic condition I have get to me, then I wouldn’t even be able to function.

I recently had to get a physical for work and the doctor doing (not my normal doctor) asked me how I could function with all the medication I’m taking and with the medical conditions I have. He wasn’t concerned with just the line of work I did, but with normal tasks like driving a car and taking care of my children. He was surprised I walked into his office! I told him I could carry out these functions because I had to. And the medicine didn’t affect me negatively because I needed them in order to function, that without them was when I couldn’t function!

If we focus on the negatives, we will find ourselves lapsing into a cycle of self-pity. People will not want to be around us and we will become isolated. We will become depressed, and with depression our pain increases. In order to help our bodies, to help whatever medicines we may be taking for our chronic conditions, we would do ourselves a favor and think positively through the pain.

If it doesn’t kill you, it only makes you stronger.

Endochick’s last blog post..Getting fit with the Wii Fit

5 JeanneNo Gravatar { 06.24.09 at 10:23 am }

Alicia,

Thanks. I honestly think support from fellow patients is one of our greatest assets. I am extremely grateful that you found the local endometriosis support group because that enabled me to meet you… one of the strongest, kindest, most thoughtful people I have met in my entire life! I have learned so much from you… and you help an enormous number of people with your blog, Yaya Stuff. Your intense research on the topics of miscarriage, infertility, foster-to-adopt, and adoption and the writing you’ve done about these issues on your blog is so helpful to so many.

Jeanne

6 JeanneNo Gravatar { 06.24.09 at 11:19 am }

Endochick,

If I allowed every ache and pain (some not so little!) to stop me from moving forward, I wouldn’t function either. I hear what you’re saying. I too carry out functions where I sometimes surprise myself and think afterwards, “how did I do all that when I feel like this today”? As far as medicine’s effects, I know you have had a long, complex trial and error to reach the point where your medications are helping you more than they are hurting you (side effects). Obviously, this is highly individualized as some people are extremely sensitive. I know I have one friend with multiple chemical sensitivity that has reached a point where her body can’t handle pharmaceuticals at all. She went through some scary reactions before reaching this conclusion and what she experienced was not pretty! I am glad you have found the combination of medications that is working for you right now at managing the symptoms of your multiple chronic illnesses.

That said… Depression is very common for the chronically ill. It is not unusual and NOT a sign of weakness. I absolutely agree with the “what doesn’t kill us makes us stronger” notion. I just want to clarify because I don’t want to appear in any way to be implying that anyone who is clinically depressed in the wake of chronic illness is somehow “weak” or just needs to “try harder” because it “has to be done”. I know that with my own depression… no amount of willpower can fend off the depression demons when they come calling!

As we discussed offline, there’s a difference between avoiding pity parties/trying to focus on the positive… and suffering a diagnosable form of depression. I just want to be clear on that distinction because all of the positive thinking in the world can’t help me when I have periods of depression. I certainly don’t want anyone thinking I’m judging them for being depressed because I have firsthand experience with it and it would upset me greatly if someone judged me for it. It’s a biological illness that leads to my depression and I can’t help its symptoms any more than I can help endo symptoms. (Plus, mental illness is even MORE stigmatized than endometriosis… which is pretty sad).

Basically, throwing a pity party is far different than suffering with a diagnosable depression. If you are reading this and feeling symptoms you believe may be depression, please seek appropriate medical attention. Depression can be very serious and professional help can be very useful.

Endochick, getting back to what you said… I agree that focusing on the negatives truly does lead down the self-pity path. This path is not productive, is isolated, and is lonely as you alluded to. Positive thinking IS helpful.

I just want to make sure that readers are not perceiving the message of the power of positive thinking to somehow mean that if you’re depressed while chronically ill, it’s somehow “your fault”. A person can’t help having a diagnosis of depression any more than they could help a diagnosis of endometriosis, interstitial cystitis, or fibromyalgia. Just like with those conditions, when symptoms present themselves it’s important to be evaluated by a medical professional and get whatever medical attention is needed to manage the symptoms of depression.

Our society has stigmatized mental illness for too long and it’s crucial that patients with depression obtain needed medical attention. No one should suffer in silence.

Thank you, Endochick, for a thought-provoking comment. 🙂

Jeanne

7 JeannetteNo Gravatar { 06.24.09 at 2:30 pm }

Hi there Jeanne:

Great post and awesome way to put it. IT DOES STINK!!! In fact sometimes it stinks a whole lot. However, you are absolutely correct in the importance of not having our entire focus on the chronic condition and becoming too negative. I will clearly admit, I do struggle with that on many days, particularly when my pain is out of control. It is tough to do, however I do notice that when I work at trying to be positive I do feel a bit better in general…the mind is certainly a powerful thing.

I know this will likely continue to be somewhat of a struggle for me, however, I have committed to continuing to work at it. Thanks again for another great post!

Take care,
Jeannette XO

Jeannette’s last blog post..DEAR THYROID…

8 JeanneNo Gravatar { 06.24.09 at 2:38 pm }

Jeannette,

Thank you. Yes, it really does stink. Over the years, I have met hundreds of chronically ill patients and I have observed the importance of focusing on the positive no matter what the illness or severity. When I think of Christopher Reeve, Helen Keller, and Michael J. Fox (to name a few), I see that they have all embraced this philosophy. I struggle with it too. I think we all do. It’s not something you can just go onto “auto-pilot” for. It’s worth the effort though, I think, to take advantage of the uplifting, positive, relaxing things.

You take care too!

Jeanne
xoxo

9 Elizabeth WakefieldNo Gravatar { 06.24.09 at 4:52 pm }

This really helped me today – one of my really bad days – the quote I repeated over and over to myself and it helped so much. Thank you!

10 JeanneNo Gravatar { 06.24.09 at 4:58 pm }

Elizabeth,

I’m glad you found the Helen Keller quote helpful. That woman has some absolutely amazing quotes. She’s one of my favorite people to quote. I just visited your blog a short while ago. I am sending positive energy your way!

Jeanne

P.S. I just saw your tweet and I’m glad you are connected with Jasmine. She is awesome! I know so many people who have migraines and they are so terrible. I’m thinking of you!

11 Jannie FunsterNo Gravatar { 06.24.09 at 11:18 pm }

Best Post Ever!!

It just says everything so well. We must be happy of the good times and good days we have.

And boy – you are so lucky to live in the sticks, what a wonderful existence out there in nature. And wow, some big bunch of grass to mow, wowee.

Now, how do I tweet this? I think I can figure it out for sure! (I’ve tweeted before.)

You might want to look into a plug-in or a bit of code for a tweet button on each post. Hey, I can probably even help you with it!! I am Jannie, hear me roarrrr. 😉

xooxo
.-= Jannie Funster´s last blog ..10 Great Mysteries of the Universe =-.

12 JeanneNo Gravatar { 06.24.09 at 11:32 pm }

Jannie,

First, thank you!!

I’m glad you like the post.

Yes, we see LOTS of wildlife. You should see the other animals we got pictures of just this past weekend. I’m telling you… It was like Mutual of Omaha’s Wild Kingdom here. (Do you remember that show? If I do, I think you do… right?) Yes, the grass! You only saw a small corner of it. Too much grass to mow. Don’t get me started on the grass. 🙂

I just emailed you about the “Tweet This” option at the bottom of each post. You have since emailed me back that you’ve tweeted the post. However, for anyone reading this who is not aware of how to tweet one of my posts if you feel so moved, simply locate the “Tweet This” at the bottom of a post. Click that hyperlink. A window will pop up in case you want to modify/customize the message. Then, when you’re ready, just click reply and tweet will be sent. This is very helpful to me in getting the word out about my blog and its posts. So if you think something is worth sharing, please consider taking the “Tweet This” option. 🙂

Jannie, you are too funny!

Jeanne

P.S. I like the Helen Reddy reference. 🙂

13 Melissa RalstonNo Gravatar { 07.03.09 at 5:19 pm }

Given what I’ve been through lately, my high-risk doctor’s nurse often asks if anything upsets me. For those who are reading this and don’t know, I am 6 months pregnant and having a VERY difficult pregnancy requiring IV treatments twice a week and have had quite a few complications.

Yes, I am upset. I’m upset that I can’t enjoy what should be one of the happiest times of my life. Not only do I get to bring another miracle into this world of ours, but I am also lucky enough in the first place to conceive. But it’s hard to enjoy something that is, what my fertility doc said to me, making all attempts to make my life miserable.

I could easily stay in bed, in fact that’s where I’m supposed to be anyway for the 24 hours of the day, and be miserable. But instead, I attempt to put on my smile and make it through each day in one piece. I even celebrate at the end of the day just because I made it through.

The nurse thinks I’m nuts due to my sense of humor. I smile and say thank you when she goes to attack my veins with the IV. No matter how horrible I’m feeling, I will always have something funny to say about the “horribleness” of the situation. This week, after she failed three times to be able to get the IV in, it was “They know what you’re after and are throwing a mini-revolution”.

Today has been a very rough day for me. But between the tears I’ve managed to catch up on all of my support group e-mails and am attempting to catch up on blogs. Somehow, it makes me feel better just to be able to contribute something that might make someone else’s day even a smidgen easier.

What a beautiful skunk. I’m sure it’s smell is bad, but then again, if you live in Toronto which is on day 12 of a garbage strike, it probably smells a whole lot better!

Hugs,
Melissa
.-= Melissa Ralston´s last blog ..Endo and CMP =-.

14 JeanneNo Gravatar { 07.05.09 at 4:24 pm }

Melissa,

Having had almost daily communication with you and knowing what’s been going on, I have to say that stating you are having a “VERY difficult pregnancy requiring IV treatments twice a week” and that you “have had quite a few complications” is an understatement! It would be hard to know how to sum up what you have experienced in a concise form but that really touches the very tip of the iceberg only!

You have every right to be upset. You have been gravely ill. Who wouldn’t be upset? I lost count of the number of trips you’ve had to make to the emergency room a long, long time ago. You have been through sheer hell.

Yes, it certainly would have been nice if after nine miscarriages you could have 5 minutes of peace with this pregnancy but I know that you haven’t as of yet. I also know you are very grateful to be pregnant. As you said, though, it is natural to have difficulty enjoying this time period when you are so very ill. Honestly, I marvel at how well you are handling it all mentally. Certainly you have been thrown about every imaginable curve ball a pregnant woman could be thrown. Your sense of humor is a huge asset and great coping mechanism!

Now. You must have known when you posted this next section what I might say to it. (After all, we’ve talked about this before). So I’m just going to go for it.

Yes, you are supposed to stay in bed 24 hours a day! Not for the purpose of being miserable but because that is what your high-risk pregnancy team is advising. I am not suggesting there’s anything wrong with smiling and trying to get through your day with as much positive energy as possible. (Being in bed does not have to be synonymous with frowning, you know). 🙂

When you say, “that’s where I’m supposed to be anyway for 24 hours of the day”, I KNOW how impossible that feels to you. I know you feel compelled to do laundry or wash some dishes. I know that. (I fully realize you’re not out running marathons either). I know you’re just worried about things like laundry and dishes. I also know that my doctor had literally told me, “Do not sit upright at all, even for meals. You’ll have to eat lying down. The only time you can be upright is to use the bathroom. Then you need to be completely flat immediately afterwards”.

The part of me that is very concerned about you can’t blow on by this portion without re-registering my concern about anything other than 24 hour/day bed rest. I know it’s boring. I remember very well how very boring the strictest possible bed rest is.

The nurse can think whatever she wants. Your sense of humor is awesome and it’s enormously helpful. So she can think what she wants but I, for one, am glad you have that awesome sense of humor that you’ve been putting to good use.

I’m really sorry you had a rough day. 🙁 You contribute a great deal to many people! Just make sure you’re giving to yourself too. 🙂

Yes, it is a pretty skunk… isn’t it? You know me and my smell sensitivity. If Skunk sprays, no one’s more unhappy about it than me. I think it’s just a beautiful animal, though. Plus, for being a nocturnal animal, Skunk posed nicely for the camera… don’t you think? Dear heaven… I didn’t know about the garbage strike. I can’t imagine! I probably would have passed out on day 1 or 2. Is the strike still going on? Oh, that’s terrible! I would NOT fare well!

Melissa, I think about you a great deal. I’m sending positive energy your way! You have been through so much. I think your poor body is holding up valiantly under incredible strain. I know it might not feel like that to you because you’re the one living with all of the problems… but I think it’s amazing that your body has taken so much and just keeps plugging away.

Hang in there!!! 🙂

Hugs back,
Jeanne

P.S. I know you have been in bed A LOT and that it’s driving you mad. I know it’s hard. I am just concerned. Hang in there!

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