Trust the feeling!

You know that feeling in your gut or where ever it lives that something isn’t right, or this person isn’t that good!? Trust it!

I can tell within 20 seconds whether a doctor is going to be good to me or not! This feeling is never wrong! I actually get this feeling with anyone, but I listen to it more closely with doctors!

These medical professionals are supposed to take good care of us, in fact we trust them with our lives without even knowing anything about them because of the work they choose to do!

I listen very carefully and watch closely at how they act when they first get in the room, it all is very important in how they are going to treat you! Now I will say that some of this may have to do with how their day is going and what they read in my chart. I know for a fact that some doctors have written lies about me in my chart and I am not sure how to fix that yet, but maybe what is written makes them think that I am wasting their time, I really don’t know! Maybe I for should ask that some time!

I always assumed that doctors knew best for the most part, and that is true in some cases, but not always! Some doctors like to just go along with the basics and when I ask for more or  challenge them, they tend to get upset! I have had a doctor stop seeing me because I wouldn’t do anymore physical therapy and sleeping pills didn’t help! He didn’t want to dig deeper and try to run other tests or think and figure any of it out! Then of course if he writes something off in my chart, the next doctor will see it and not take me seriously I bet.

Doctors want us to tell them what is going on and what is wrong with us, yet they get upset when you go into too much detail because you have done your research. It is very true when I say that the people living with these health challenges know more than their doctors, because we know how our body is acting and what is working and not working! We need to do our own research and yes I know we can’t believe everything we see online and we don’t want to self diagnose, but it is better that just waiting on the doctors as they take forever sometimes!

Doctors will have more access to the medical side of all these things, but there is a world of information and support groups out there to help us! Talking with others that are going through some the same things you are is not only helpful emotionally & mentally, but also helpful with finding out what is wrong and what to do! You simply take in all the information, notes and everything and go through it and see what you want to talk to your doctor about! It has been very helpful for me! This is also a great way to find out some more natural supplements or things to help you get some relief, of course you should always talk to your doctor about it!

I feel like I have gotten off topic, but I think it all goes together! You are seeking help from these doctors and you need to make sure they are the right fit for you! One doctor doesn’t fit good with all patients! I have lost count on how many doctors have said “well this is what a lot of my patients do, so you must be the same way” or “this works for these people, so it will work for you as well”. Sorry, that is not always the case. They need to learn to think outside the box and we need to learn to stand up and fight for the right care!

If you get a feeling like your doctor isn’t listening well or they are not trying their best, speak up! If you don’t think the doctor is going to listen, then talk to the nurses, I know or a fact that they do listen. Nurses are the ones in my mind that care the most as they do most of the work! You can also ask to talk to the care manager, I have spent a lot of time talking with care managers, both in person and on the phone, as they tend to check in with me to see how my doctors are working for me and I love that! Care managers are the main go between with patients & doctors, they need to know who doctors and nurses are doing!

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Trust your gut!
 

Trust that feeling!
 

Stand up for yourself and your health care!

Talk to nurses!
 

Talk to care managers!

Talk to your support groups! If you don’t have one, get one! We may not know each other that well or at all, but we know what you are going through and are here to listen, talk to, vent to, and brainstorm!

You are never alone!

If you don’t live it, you don’t fully understand!

Ahhh, it’s always such a joy to sit there and listen to medical professionals go on a preach what they think is best for you when they don’t know you or your history, limitations, or what your body and illness is like!

There isn’t one thing that works for all of those that suffer with a chronic illness like fibromyalgia. There are many different medications out there to “try” and treat it, emphasis on “try”.  Some of these medications do help some people, but they don’t help everyone. I, for example have tried so many of them with no relief, not even a little, or they had too many bad side effects. 

Now I have a whole list of things that happen to me with this illness, but I’m not totally convinced it is just from one illness. Getting doctors to actually listen and do something is beyond difficult. They all have a few certain things they will do, and won’t do anything else. They are all set in their ways, and don’t try telling them to do something different. Yes, I know that I am not a doctor, but I do know my body best. They don’t fully know what this crap feels like, or what it does to our bodies outside of what we tell them.

One of the set in ways of the doctors is exercise. Now I’m on board that everyone needs some sort of exercise, we need to move, but that’s not always possible for those with a chronic illness. Me, for example am one that exercise makes things so much worse, and I’m not talking about being tired or a little sore because you are using muscles that haven’t been used. I am talking about literally needing to be carried around, and not being able to move because of the pain. Laying in bed for two days because you are tried to exercise for 30 minutes. I am in no way a lazy person and I don’t want to lay or sit around all day, and most days I don’t. I’m not up running or walking a marathon, but I’m moving the best that I can or working at my desk. 

Now my experiences may not be the same as a lot of peoples experiences. I can not walk or stand for long, long being 10-15 minutes, before my legs get very weak and I get lightheaded and feel like I will pass out. On top off that my ankle, which is permanently swollen, becomes so painful and spreads up to my knee. So walking, running, standing isn’t always a good option for me. 

What are the suggestions or recommendations from the medical professionals? Exercise! The same old preaching. Inactivity is your enemy, you need to exercise even if it just walking on the treadmill 10 minutes a day. The problem with that is the treadmill is very different than plain walking, I walk like a limping penguin. Treadmills force you to walk and in a certain pace and style of walking, where plain normal walking you can pick your pace and style to walk.

They don’t accept that as a reason not to do it, they look at you as if you are making excuses not to do this. With the chronically ill these aren’t excuses, they are limitations in our lives. 

Here is an example of a conversation I had with a medical professional:

MP: inactivity is your enemy, you need to exercise. I want you to try to walk on the treadmill at least 5-10 minutes a day.

Me: That’s nice and for a lot of people that would be easy, but for me and a lot of others, that’s not possible as exercise makes are condition so much worse.

MP: you have to do something, you can’t be inactive and sit all day.

ME: I don’t sit all day, I walk around the house when I can, and work at my desk when I can. I’m not lazy, I do have days where I can’t do anything, but I do move around.

MP: well do you ever go to the store? Get out anywhere?

ME: Yes

MP: Then you have to walk, how long does this shopping trip last?

ME: It varies. Sometimes 30 minutes, sometimes a little more.

MP: So then you can walk! You shouldn’t have any issues.

ME: Yes, I can walk, but then again you are assuming that these trips to the store are easy. Sometimes just walking from the car to the store and my legs are done. I have to be holding on to the cart at all times in order to walk. Sometimes I’m leaning on the cart and resting. Sometimes I have to sit for a bit. And practically every time I am almost falling down, so weak and nauseous, and crying because my legs can’t handle the shopping trip. But yes I make it through because I have no choice but to do it. 

MP: uhhh.

They don’t like it when I prove that their methods are always the best. Most think that with a 2-5 minutes rest that you will be able to go for hours again! Sadly that is not how it works, especially for me! Resting makes it possible to keep going, but the amount of time you go keeps getting shorter and the more you push yourself the worse it gets! Sooner than later my body will refuse to go anymore and you don’t want to encounter that away from home! Now a car ride around does help you rest but not all the time, because you aren’t fully able to relax as it not extremely comfortable in the car! Once my body has enough and it gets weak enough it will literally shut down as in I will not be able to move my legs as if they are paralyzed, it happens way too often! That’s all a different story in another post!

You see with chronically ill people, we need to plan out everything. For example if I were to go and walk on the treadmill, I have to take in account for the flight down and back up the stairs, plus the time I spend walking. Now the flight up and down the stairs are enough torment for my legs that I won’t last hardly any time on the treadmill. We have to take into account where we are going. How long it takes to get there. The time we spend walking and standing. Add in the energy it takes to talk, lift things if needed, ect. We have a limited amount of energy for the day, so everything has to be calculated out precisely. There is always going to be someone who thinks that they know what is best for you and what you can or can not do! Sadly a lot of these people are chronically ill, I have lost count of how many times I have seen people yelling at others with the same illness that if they can do it, then you can do it! I am in no way saying that these medical professionals don’t know anything about the illnesses, they for sure study about it. What I am saying is that they really need to adjust their way thinking to match the patient! Everybody is different and not certain thing works for every person!

I’ve been told before that I am not doing things because of what I think or am afraid will happen.  Which is so far from true. I have learned a lot about my body & health challenges and know what my body can handle. It took me a very long time to accept all this and learn to pace myself and such! I have learn as we all have what our bodies can and can not do with these challenges. We all know our bodies the best as we are living with this every day!

So many people claim to know somebody that has this horrid illness and to know a lot about it and for sure some people do as there are millions of people out there suffering! Sadly some only claim to know and they don’t really care to learn anything or try to understand. I do understand that some chronic illnesses are very hard to understand, heck I don’t fully understand it all and I am living it!

What people don’t seem to understand is that even though we aren’t physically working or doing something, it’s still hard on our bodies! Social engagements, even if it only requires sitting on a chair or couch, it is a lot of work! The ride there, or if they come to our house and the time sitting and talking and focusing on everyone! It is a lot of tiring work to sit there and socialize, I’m not even sure if I could explain right how much of a toll it takes on our bodies! It physically drains our energy even if we are relaxed and comfortable!

I wish there was a better way to help everyone understand everything someone who is chronically ill goes through! It is even harder to explain when that illness is mostly invisible, so invisible that tests and such don’t show anything wrong, yet there is something very wrong!Maybe, just maybe we will someday figure out how to explain it all and even get some much need help and relief! Until then stay strong and pace yourself! Don’t let anyone make you feel bad for being chronically ill! You didn’t choose the chronic illness life, it chose you!

Sometimes, I wish…

Sometimes I wish….

This is the area where I would normally write everything that goes along with I wish!

I wish I could….
I wish I could say….
I wish you’d listen…
I wish I would have said…
I wish I was heard….
I wish…..
I wish…..

I could go on and on , but let’s be a bit honest here it doesn’t matter much! It won’t change anything, ever. Nobody wants to hear it!

So instead I’ll just say I wish….

Why Susan?!?

It’s been a while since I wrote to y’all and with my 9 year chronic illness anniversary just passing (Feb 16, 2011) I want to introduce you to my friend Susan!

I have a friend named Susan and she isn’t like any normal friend because nobody can see her! No she is not my imaginary friend really, I can feel her presence more than I can see her. Actually I never actually see her, but I do know what she looks like.

Now before you write me off as some crazy loon who’s making things up, let me explain who Susan is and why she’s always hanging around.

Nine years ago I was injured at work and from that injury I was blessed and diagnosed with a chronic illness. I went downhill very fast after that injury as I was so used to being healthy and independent. I never asked for help and was always helping and doing things for others because that’s what made me happy! Feb 16, 2011 that all changed and I couldn’t handle it. I was sent to a pain program to try and help with all the excruciating pain that I was now forced to deal with everyday. Part of that program was talking to a psychiatrist and I honestly didn’t like that idea, but I had to do it. Turns out that she was very helpful and brought me back from the dark hole I was now living in.

One day she told me to imagine my pain. What did my pain look like? It only took a few seconds to imagine this and I then described it and drew it out on paper. What I saw was this little girl wearing a purple dress. Weird thing is she didn’t have any feet. No, she wasn’t a ghost, but she did just float around my body. As I described this girl I said that if I really listened I could hear her laughing. I didn’t like her laugh and I still don’t. She will just float around my body causing me pain and laughing about it. I don’t really like Susan, heck I don’t think anyone could like her.

As part of my treatment, my psychiatrist taught my some breathing techniques. What she would have me do is sit back, close my eyes, and focus only on my breathing. I would have to count to 3 as I breathe in and count to 3 as I breathe out, making my breathing even. The point to this was to be able to relax, and as I relaxed my body went more numb and I could just drift away from all the pain and trouble this horrid illness brought to me!

She next told me to imagine My pain leaving my body. The first thing that came to my mind was the ending of Beauty and the beast, where the beast turns back to a man. As I sat there, eyes closed and relaxed I pictured beams of light shining from my toes and fingers and Susan trying very hard not to leave me. But she eventually was gone, although it was only temporarily. Susan never stays gone, she always comes back and sadly I will never be able to get rid of her.

After all these years I have gotten used to Susan hanging around and that in itself is sad! I don’t wish a friend like Susan on anyone. Some days I can manage the pain and not notice too much that she is there. Although more days than not she is very noticeable and angry and causes way too much pain!

Even after 9 years I still have hope that my doctors and I will find a way to manage her more and make it so she’s not so angry and mean. I still hope for the day that I can say “Susan who?”

Have you ever pictured your pain and given it a form of some sort? Did you give you pain a name?

I do truly hope that you don’t have a monster friend like Susan! If you do, have you found a way to manage it, and keep it from acting up!