Things I’ve learned from this illness!

Having a chronic illness is life changing! All you can think about it getting a diagnosis and relief!

Let me tell you that it does not get any easier after you get the diagnosis! For most it is just a name to call you health challenges! Sadly for some, like me, the meds for that diagnosed illness don’t help!

❌With a diagnosis  of fibromyalgia you get looked at like you are crazy! You get treated differently because most don’t believe that fibromyalgia is a real illness. You see to get diagnosed with fibro you have to rule everything else out. There are some things doctors look for based off the similarities in the people effected by this illness. Nobody truly understands it and that understanding may never happen!

You are definitely not crazy and fibromyalgia is 100% real and as time goes on more & more medical professionals are seeing the truth of it every day!

❌ There is a lot to learn from dealing with fibro. One thing is that you don’t truly know pain and fatigue until you deal with it on the fibro scale. Don’t get me wrong here, I am not diminishing any other kind of pain or fatigue, but it just simply off the charts with fibro and there isn’t ever one certain thing that makes it all better.

❌ Understanding, you definitely learn understanding more of what some people go through. This illness is mostly invisible and therefore people tend to think you are faking it all. With dealing with all this, you get  a better understanding of looking fine and feeling like you were hit by a train and dragged 100 miles! It really is true that you don’t know anything until you have to deal with it yourself.

❌ Not one treatment works for everyone! There are many different things that can help improve your life with fibro, but sadly not one treatment will help everyone who suffers with this illness! Unfortunately for some the medications designed to help fibro just don’t work well! More and more research is being done and I do believe that there will be more definitive help for this illness coming!

❌ Just because we suffer from the same illness doesn’t mean we understand or are compassionate towards each other! One of the first thing I did when I was diagnosed with fibro was to jump on Facebook and find a support group, because I didn’t want to go sit with actually people and I wanted access to them all the time and not just on meeting days! I have learned being in these groups there is a lot of advice out there and a lot of help figuring this all out! There also is a lot of hate. Some people get angry when they see that other people can’t do things they can do! They say “if I can do you, why can’t you? , or “You’re stupid and just being lazy by not working when I am able to!” It can get bad in those groups, actually so bad that I left all but 2, because well I don’t need a bunch of groups and hate, just 1-2 groups with really good people!

❌ Pace yourself! I have learned to pace myself, though I still have trouble with it sometimes. I will sit down each week and see what I have coming up and plan out my time, now I know that it can be messed up at any moment depending on how I feel, but then something not so important gets pushed back! We need to go slower at our tasks than normal and take more breaks than usual! Like washing windows or walls, it’s too much to do in one day, so do one room a day as that is a big task, then you do little stuff if need!

❌ Lists, lists and more lists! I have lists and notes everywhere! I actually type out daily lists of everything to do including normal tasks like brush teeth and eat and drink water, sadly sometimes I will forget to eat! I have laminated lists and blank paper to write down things I want/need to do! Laminating it just saves paper and you can write and erase it so many times! If you can’t laminate something you can write on  glass or picture frames with dry erase markers, it’s so helpful! I do have note apps on my phone & tablet for when I am not near my paper or lists! They are so helpful! I also set reminders and timers with Alexa so I don’t completely lose track of time!

❌  Compassion & understanding! One of the biggest things that I have learned is compassion & understanding! It is so very true when people say you won’t understand until you go through it or deal with it! I knew that there were people suffering out there, but I didn’t understand it fully until this all started! Some will get upset and say “you look fine, why are you parking in a handicap space!” What they don’t understand is that not every disability or illness is visible! I don’t have a handicap sticker myself, even though some days I really need one! Once you experience everything an illness like this throws at you and all the hate from those who don’t understand, you finally get what it is all like and you can fully see what is all going on around you! Not that you weren’t seeing it before, but it’s a little bit more clearer now!

There are a ton of more things that I have learned throughout my journey with these health challenges, but I can’t remember any more at this time!

What are some things that you have learned dealing with all this torture?

I wish feelings were like Alexa

Hey Alexa, stop!

And she stops!

I wish a lot of other things were like Alexa, don’t you?

Hey fear, stop!

Hey crying, stop!

Hey worrying, stop!

Hey bad thoughts, stop!

Hey overthinking, stop!

Hey pain, stop!

Hey migraine, stop!

Hey sickness, stop!

Hey (insert issue here), stop!

Wouldn’t it be amazing if we could say that and have it happen! Life would be so much easier! You could tell just about anything to stop and it would stop!

As good as that all sounds, I guess it would take all the fun & adventure out of our lives! We’d be happy to get rid of the bad stuff, but we would miss so much good tangled up in that bad! Seriously think of what we would miss out on if we could stop all of that! It’s kind of like the fast forward button on videos, tv, movie, ect.. We skip the parts we don’t like, but what if in those parts something amazing was hiding! There is something to learn and gain from every bad situation in our lives! Sometimes we can’t see it until years down the road! Now sadly not every bad part is going to have a good part, but there is a reason for it all even if we may never know that reason!

What would your life really look like if we just stopped everything we didn’t like or didn’t feel we had time for! Would you work, if work is not fun? If not, how would you do the things you love so much? Wow, way too many questions and thoughts in this area of it all!

Life would be a tad boring!

Chronic pain truths!

If we don’t say it hurts: It hurts!

If we say it does hurt: It really forking hurts!

No chronic pain doesn’t make your occasional aches and pains less valid!

But your occasional aches and pains don’t magically grant you understanding of what I feel everyday!

It’s okay to have moments when you grieve the loss of the old healthier you!

Myth: You can see when someone is in pain!


Fact: Chronic pain patients hide their pain so well that you would never know they’re really suffering!

One of the most frustrating thing about chronic pain is that you can do right and still be sick!

I am constantly torn between “I have things that need to be done and can’t let this illness run my life” and “I have to listen to my body and rest!”

I often feel a lot of pressure to show up to parties and events even when I feel absolutely terrible!

The unpredictability of being chronically ill makes staying on a schedule difficult!

Things my chronic illness sometime stops me from doing….

  1. Getting out of bed!
  2. Going out with family/friends!
  3. Having fun!
  4. Working/house work!

I miss working!

I miss working!

You, you read that correctly, I said it, I miss working! This coming from a person hates leaving the house and doesn’t like people! No I didn’t not mistake work with the people I worked with! Although, I do miss some people that I worked with from various jobs!

I have worked a lot of different jobs, a lot! I spent quite a few years working at a temp agency going to different places that needed temporary fill in, sometimes it was a new place every week! It was fun, but eventually I quit doing that! The one thing I hated about working besides the people, was doing the same thing over and over every day, gaah it was torture! I simply can’t handle or stand doing the same boring thing everyday! 

I also never found a place where they let my potential soar and truly appreciated me! I started working when I was 14 because I was bored and didn’t stop until my health challenges forced me to! I worked no matter what! I couldn’t use my right arm, I still worked! I could barely move because I injured my back, I still worked! I was sick, I still worked! I was taught to always work or I get fired!

I stayed at one job way too long! It was slowly killing me and sadly that is not an exaggeration! It was so horrible that I’d cry and vomit on my way to work! I don’t even know why I didn’t quit! The only reason I left was because they fired me, and they did that because they was tired of dealing with my health challenges that they caused through injury and abuse!

It kind of was a blessing that they fired me, because for some reason I wasn’t going to quit! And from there I made a pit stop at a retail store for a year and then found the job I had been looking for! This place was amazing, it didn’t pay the best, but they made up for that with kindness, opportunity and care! They loved me! I got to work closely with the owners, who came out daily to check on me because I told them all the health challenges I was facing and he wanted to make sure I was good! I received the opportunity to help make it an even better place to work and make sure the workers got the proper training to ensure the best quality products! Also the best part was that the work I did was different almost every night, depending on what needed to be made and sometimes you would have to switch between machines or molds in the machine in the same night. It was always changing and it was fun!

I do realize that this place has more than likely changed a bit since I had to leave and may not be as awesome as I remember, but I’m pretty sure that it is, for me at least! I know most didn’t like working there! I just appreciated being appreciated and having a fun friendly place to work and to me the working environment is more important than getting paid more!

I can tell you I wouldn’t be able to handle working with not working for around 4 years, I kinda lost my working speed and strength! If you don’t keep going or can’t keep going, you tend to lose it! Sadly my health challenges won’t let me work anymore and if you see me or even spend a day with me, you may never even know I have these challenges as they don’t show on the outside and I don’t go out unless I’m doing mostly good that day!

So many things that I want to do, so little ability to do them!

Slow down please…

You never dream that one day you would wake up sick and never get better, but it happens, obviously and to way too many people!

Luckily for some of those people they can manage it somehow and actually lead a pretty productive life with a some hiccups here and there! Sadly for others that don’t get that option as no matter what they try, it doesn’t help get them to even a somewhat decent functioning level. 

Quite often there are days where you get stuck in the “why is this happening phase” and that is all you can think about! Not a fun or good place to be, you can’t avoid going there all the time, but most of the time you can keep busy enough to keep you mind from going there.

Do you ever wonder if this is a way of telling us to slow down? We get so caught up in the normal we found in our  lives that we tend not to take time to appreciate everything that we have or the world around us! 2020 sure made us all slow down a bit and as messed up as the year was, it was still amazing to see what we really didn’t need to be doing and taking time to see all the beauty this world has to offer is good!

Do you wonder if getting sick was a way to tell you to step back and slow down. That you didn’t truly belong where you were in your life? Almost like you weren’t listening and there needed to be something big to make you step back! I know that it may seem a bit ridiculous, and it is kind of still thinking along the lines of “why is this happening”. I do tend to think more of what is the purpose of all this? What am I supposed to learn from all this? What is this supposed to teach me? How do I help people through this?

What are your thoughts, did this happen for a reason? Is there a purpose in all this? How do we help others with all these experiences?

What good will come from this? I have to believe there is a bigger purpose in all of this suffering, there just has to be!

19 things on Fibromyalgia

  1. They don’t really understand fibromyalgia. This illness varies so much and treatment plans are different for everyone, so there’s just so much they don’t know yet!

2. You will more than likely lose friends because you can’t go to everywhere and do everything that you used to!

3. They don’t fully understand how to treat fibromyalgia, they think that what will work for one person will truly work for everyone!

4. There will be people who don’t believe you about your pain, they may think that you are making it all up, because you don’t look sick!

5. They will more than likely say your other issues are a symptom of fibromyalgia!

6. That this illness effects every part of you and your life, not just your body! It will effect you work, social, love life and your friendships!

7. They won’t tell you that the medications won’t always work! That you will more than likely gain a lot of weight because of those medications!

8. They don’t tell you about the sensory overload, the sensitivity to light, sounds, smells!

 9. It’s hard for people to understand how much energy and effort it takes to do the most simple tasks! That getting out of bed and showering and getting dressed can completely wipe you out!

10. They don’t tell you all the other connected issues like depression, anxiety, ibs and more!

11. That you will never get good quality sleep, even with the sleeping pills. Even if you stick to a sleep schedule of going to bed at the same time every night!

12. They won’t tell you that sometimes natural supplements and remedies are the better than the medications the doctor gives you! They for sure won’t cure you, but they can help relieve some of the symptoms!

13. How what you can do one day, you might not be able to do the next day!

14. They don’t realize how hard it is to have this illness and how disabling it can be, because you don’t look sick!

15. How the depression can be awful. Grieving the life you used to have, and the things you aren’t able to do anymore.

16. They don’t tell you the range of emotions you will face, the grief, the anger, the guilt of feeling like you let everyone down, and fear of not knowing what your future will be like!

17. They don’t tell you that going out and socializing will use up so much energy, even just the car ride there and back is very hard on you!

18. The you will mix up and forget words and they don’t know it because of fibromyalgia!

19. That it takes days to recover from holidays, the cooking, cleaning, socializing, ect!

I’m sorry for your pain

My dear friend,

I am so sorry for your pain.

Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it.

I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear.

I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time.

I never would have wanted to pass it on to you, my love. I remember so well suffocating under the weight of it, struggling for breath, fighting to throw it off while wrapping myself in its awful warmth, clutching its worn edges for dear life.

I know that the fear feels like it’s permanent, fixed. But one day down the line you will wake up and find that you’ve left it next to the bed. Eventually, you’ll hang it in the closet. You’ll visit it now and then. You’ll try it on for size. You’ll run your fingers over the fabric and remember when you lived in it, when it was constant, when you couldn’t take it off and leave it behind. But soon days will go by before you wear it again, then weeks, then months.

I know you are staring down what looks to be an impossibly steep learning curve. I know it looks like an immovable mountain. It is not. I know you don’t believe me, but step by step you will climb until suddenly, without warning, you will look down. You will see how far you’ve come. You’ll breathe. I promise. You might even be able to take in the view.

You will doubt yourself. You won’t trust your instincts right away. You will be afraid that you don’t have the capacity to be what you want to be. Worse, you’ll think  that you don’t even know what you need be. You do. I promise. You will.

That’s how it happens. When you need capacity you find it. Your heart expands. It just does. It’s elastic. I promise.

You are so much stronger than you think you are. Trust me. I know you. Hell, I am you.

You will find people in your life who get it and some that don’t. You’ll find some that want to get it and some that never will. You’ll find a closeness with people you never thought you had anything in common with. You’ll find comfort and relief with friends who speak your new language. You’ll find your village.

You’ll change. One day you’ll notice a shift. You’ll realize that certain words have dropped out of your lexicon. The ones you hadn’t ever thought could be hurtful.  Gimp, lazy, malingerer, stupid.   Never again. You won’t laugh at vulnerability. You’ll see the world through a lens of sensitivity. The people around you will notice. You’ll change them too.

You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.

You will read more than you can process. You’ll buy books that you can’t handle reading. You’ll feel guilty that they’re sitting by the side of the bed unopened. Take small bites. The information isn’t going anywhere. Let your heart heal. It will. Breathe. You can.

You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.

You will dig deep and find reserves of energy you never would have believed you had. You will run on adrenaline and crash into dreamless sleep. But you will come through it. I swear, you will. You will find a rhythm.

You will neglect yourself. You will suddenly realize that you haven’t stopped moving. You’ve taken care of everyone but you. You will forget how important it is to take care of yourself. Listen to me. If you hear nothing else, hear this. You MUST take care of yourself. You are no use to anyone unless you take care of yourself first. I mean that holistically, my friend. Nourished, rested, soul-fed. Your children and others deserve that example.

A friend will force you outside. You will look at the sky. Follow the clouds upward. Try to find where they end. You’ll need that. You’ll need the air. You’ll need to remember how small we all really are.

You will question your faith. Or find it. Maybe both.

You will never, ever take progress for granted. Every milestone met, no matter what the timing, will be cause for celebration. Every baby step will be a quantum leap. You will find the people who understand that. You will revel in their support and love and shared excitement.

You will encounter people who care for you in ways that restore your faith in humanity. You will cherish the friends and people and doctors who see past your challenges and who truly understand your strengths. They will feel like family.

You will examine and re-examine every one of your own insecurities. You will recognize some of other’s challenges as your own. You will get to know yourself. You will look to the tools you have used to mitigate your own challenges. You will share them. You will be better for it.

You will come to understand that there are gifts in all of this. Tolerance, compassion, understanding. Precious, life altering gifts.

If you are a parent, you will worry about your children. You will feel like you’re not giving them enough time. You will find the time. Yes, you will. No, really. You will. You will discover that the time that means something to them is not big. It’s not a trip to the circus. It doesn’t involve planning. It’s free. You will forget the dog and pony shows. Instead, you will find fifteen minutes before bed. You will close the door. You will sit on the floor. You’ll play Barbies with your daughter or Legos with your son. You’ll talk. You’ll listen. You’ll listen some more. You’ll start to believe they’ll be OK. And they will. You will be a better parent for all of it.

You will find the tools that you need. You will take bits and pieces of different theories and practices. You’ll talk to peers and doctors and therapists. You’ll take something from each of them. You’ll even find value in those you don’t agree with at all. Sometimes the most. From the scraps that you gather, you will start to build your quilt. A little of this, a little of that, a lot of love.

You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows you better than you do. You will respectfully listen to the experts in each field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in you.

You will think you can’t handle it. You will be wrong.

This is not an easy road, but its “rewards” at times are tremendous. The remissions, however small, are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.

You will be OK.

And I will be here for you. Every step of the way.

Letter to my body

Dear body,

 I’ve known you my whole life and we have been through so much together!

I have always tried to be kind to you, I thought I was doing a good job!

I’m so sorry if I did something to hurt you!

I am so sorry if I neglected you sometimes!

I am sorry that I made you work so hard, but I just couldn’t just sit around!

I guess you might be able to tell that I am writing to you about some of our painful adventures together! I mean, come on they are our most memorable moments together, probably because the pain won’t ever let us forget! How rude!

You’ve given me a few hiccups growing up, but nothing too bad! I thought we were getting along well! The first 20 years of our lives we had so much fun doing so many jobs working through a temp agency, sometimes a new job every week, oh that was exciting!

The first 20 years together were good, but then it started to slowly go downhill! We already were suffering with migraines, not fun at all! Then I found out we had asthma, not too bad, but still a bit of a struggle as we worked with a lot of sprays and dust that you didn’t like! Oh the racing heart and pain that sent me to the hospital so many times with out any answers wasn’t any fun, but we made it through and now with the help of our meds, our heart doesn’t race as often anymore!

We got a break for a few years where nothing health wise happened and we were enjoying friends and family! Then the major fun started, and by fun I mean painful craziness!

I am sorry that I almost broke our tailbone when we fell down the stairs and boy does it flare up in pain still, ouch!

 Among other painful adventures I am so very sorry that I forced you to stay at a job that was slowly killing us, I mean for reals! There was so much hate there that you threw a fit every day driving there, but I was too scared to start all over at a new place, but we did it anyway after they hurt us and with that came all these new health issues! Then they kicked us out because they didn’t want to deal with it anymore!

But we were free from that hell and finally found a job that we loved and they loved us so much! I thought you were finally happy, but we slipped and fell so hard on the ice and more challenges continued to develop!

It finally got to be too much to handle and you forced me to stop working in 2017, I didn’t like that and I still wish, even with all the new crap going on in the world, that I could go to work! I’m also sorry that I didn’t stand up for us and demand better care with our doctors! I’m sorry that I didn’t watch our medical files closer to see all the lies they wrote about us, making it so we can’t get disability!

I hope that you can forgive me for falling so many times and causing so much pain! Believe me that our time isn’t over yet and I promise I’m going to do the best that can to get you help and relief from all this bullshirt we have to deal with now!

Have you ever written a letter to yourself or your body? Maybe a letter to your future or past self? I think It is a fun and thing to do, although this is the first letter I have ever written to myself! I’m not sure why I haven’t because I do like talking to myself! That’s not weird is it?  Ahhh, it doesn’t matter, weird is more fun!

I couldn’t do it!

I often get told “Wow, I don’t know how you do it, I wouldn’t be able to do it!”

My reply “I don’t have a choice, and you could do it”! It’s easy to say I couldn’t be able to handle that because you aren’t going through it, but when you are, you don’t have any other choice! 

I didn’t choose the chronic illness life, the chronic illness life chose me! Why this happens, I will never know, but it happens too much to a lot of people! When you are faced with this painful new life, it is extremely hard to deal with in the beginning, actually it is always hard, but sadly you get used to living with it and you adjust accordingly to get the most out of this life!

With the help of family , friends and doctors, you learn how to manage it and live with it! Sometimes it get really bad and you just can’t handle it well and that is going to happen a lot! No matter how used to this new painful life you get, it is always going to be hard! You can’t do everything that you used to be able to do! You now have to depend on more people, even for simple tasks and that is very hard to do!

You could be part of the lucky group of people and find a way to manage all the pain and fun that comes with these chronic illnesses, to where you can live a more active and better life. There will still be times where it will knock you down for a while, but that will eventually ease up and you can get back to the fun! If you are not blessed enough to be part of that group, I truly hope that you have a good support system, especially if you can’t work and they deny you disability! Depending on the illness, that is something that is hard to get!

Having a chronic illness is not only very painful and exhausting, it is also extremely frustrating because some of them don’t show up on any test that the doctors run. You are now stuck with having to figure out how to live with it and you also have to deal with all the people that don’t believe you or understand your illness, because you don’t look sick. Although you don’t owe them any explanations, it can be hurtful and frustrating that they don’t believe you and trying to prove it all, although you seriously don’t have to prove anything! You know what is going on with your body, just getting the right help can be difficult!

I often thought , why don’t people support causes until they have to deal with what illness the cause supports! Well, the answer is pretty simple, they don’t do it because they don’t fully understand until they or a family member has to go through it! Then they will research and learn more about it in efforts to fix it and support it! If only it were simpler than that!

It is very true that you will never understand it until you have to deal with it, no matter how much you research it, you still get more and better knowledge when you have to live it! I promise you that you can and will learn to deal with it! Well, mostly, as these illnesses always have a way of surprising you! You will find something that helps you to some degree or possibly more!

Sleep study nightmare

Get a sleep study, it will be fun they said…

The night of July 19, 2019 started out good with finally getting the sleep study I’ve been asking for. I was feeling so tired and nauseous from forcing myself to stay awake all & night though, and after being all hooked up to what felt like a gazillion wires I was ready to lay down.

I went though the  required steps before I could try to sleep and then it was black and quiet! 

Shortly after laying down I started losing the ability to move my right side, which is normal and I been through it way too many times! 

Without a clock I had no idea how long I laid there trying to sleep, but I eventually fell asleep. Then started the dream, it was pitch black with a dark figure running, it  was me just running from what, I don’t know. Then I was falling, more running and falling, I could feel myself falling into a deep dark hole.

 I woke up and I couldn’t move my right side, I couldn’t even open my right eye, which has never happened. At the same time, my while body was extremely restless and was jumping constantly. Then eventually that calmed down, but I lost the ability to move my left side as well. There I was laying in an unfamiliar place paralyzed from the shoulders down, and having a difficult time breathing and I couldn’t talk. I tried to say “help me” but nothing came out! Eventually a voice came over the intercom asking if I needed help falling asleep, at that time my voice had come back and I stated I could not move. She came in and asked if I wanted to lay on my side, I stated I’m having trouble breathing and I can’t move my legs or arms. She asked if I wanted to go to the hospital next door. I said I’m not capable of making the decision right now. Part of me wanted to say yes, but I knew what was going to happen at the hospital! Nothing. 

She said she was going to go talk to the doctor and he happened to be walking by, she advised him of the situation and he said he was calling 911! And then there were first responders in my room asking a lot questions, and not fully believing what was going on. I do not blame them, nobody believes it. We waited for the paramedics to get there, and then more questions. Not believing me they asked if I could move over to the stretcher. If I could, y’all wouldn’t be here. Just a couple minutes later I was in the ER, and more question came. Nobody believes me, I even stated I’m not surprised you don’t believe me, nobody ever does, but this is real, and I hate it! The doctor even stated that I can not be paralyzed as I was talking completely normal!  Seriously!?!?

They hooked me up to the monitors and left me for about 2 hours, they finally came back just as I was going to pee myself! With the help of 2 people we were able to get up and use the commode they brought in, I started gaining the use of my arms back, but not much.

They left me alone again, not doing anything but asking if my parents were really coming. They were but the storm knocked down tree branches across the driveway so it took a little longer than usual. Once they got to the hospital, the doctor finally came back into my room only to ask if what I said was happening really happens. He stated they were ready to send me home, but not alone. My parents explained that this happens very often and it is in fact real! The doctor stated I should follow up with my neurologist, I stated they refuse to help me. He said there aren’t any other tests that they can run to help figure it out! He actually wanted me to get up and walk out on my own. That was not going to happen.

So that is why I don’t go to the emergency room when these episodes happen, they won’t do anything. They actually wanted me to walk out of the hospital. Not happening, I was so weak and still couldn’t move my legs. By the time I got home I had gained back my arms and left leg to the point to semi function. Usually once these episodes end I bounce back as if nothing happens, this time I didn’t. I was so weak and sore and exhausted, it took until the next morning to get over it. But then I was still in tremendous pain because we lost power early Saturday morning and I had to sleep laying flat, which causes a lot of pain. The power came back on early Sunday morning which is great, yet the damage is done, I’m in tremendous pain, weak and exhausted. 

That is a weekend I never want to repeat again!

I was told that I had to repeat the sleep study as they didn’t need get enough data to analyze! I was afraid to go get it done,  but after a week and a half I finally called to reschedule it! The second test went better, but I still lost the ability to move, but it just wasn’t as severe as the last time! 

Sadly they said there were no problems found! Apparently I didn’t move much which is understandable as I couldn’t and was hooked up to so many wires that  malfunctioned when I did move! 

The sleep doctor office I was seeing at the time told me to keep a sleep diary! Track when I had caffeine (which I never drink caffeine anymore), when I napped and slept! The doctor said assistant started telling me here isn’t much they can do, but keep on with the diary! She stated that I couldn’t enter my room until I went to bed for the night! I said I’m sorry but that can’t happen as 1/2 my room is my craft/work area and I need to work there! I was starting to say that they can’t just go with whatever they tell most patients. That we need to think outside the box with helping me, but she got up and walked out! 

 Next thing I know she was back, and the doctor comes in. This is the first time I’ve ever met him and he starts demanding that I do what they say! I can’t go in my room and I have to be up by 5:30 am and can’t sleep until 11pm! Now anyone who deals with chronic fatigue and fibromyalgia they know the sleep is very important and I can not force myself to stay awake that long! The nights that I did force myself to stay awake for the sleep studies I was feeling so very sick and weak because I didn’t rest during the day! I will say that I don’t often nap as I’d rather be awake crafting and listening to my books. Sadly the only thing they would say is what I’ve have tried so many times. I must follow and do what he says or I’ll be screwed! 

Did I speak up and try and get them to think of something different? No, I was too shocked at how this doctor and his assistant was treating me! I know that doctors has basic routine things they want to do first for everyone, but they seriously need to adjust their plan and listen to the patients more! Figure out what is best and not try the same thing for everyone! Needless to say I didn’t set up a follow up appointment and won’t go back! I have learned to stop dealing with doctors that are rude and I don’t feel that they would ever do anything different! 

These doctors may view me as uncooperative and difficult, but I’m not! I am tired of doing the same meaningless things and want them to think of how to help patients where the standard don’t help! Like my pcp will remind me is that I know my body the best! I know what has worked and what hasn’t!

I’ve said it a million times it seems, but I’ll keep saying it. The one thing medical professionals need to learn in school is how to actually talk to and listen to the patients!