Meds, meds and more meds….

[BLOG EIGHT]

Meds, meds and more meds…. That’s another thing I hate about this life with Fibro; taking medicine. And I mean lots of meds to try to control the pain, fatigue and everything else that comes with Fibro.

One is making sure you take everything when you are supposed. Some meds may be daily, 2 daily or more. Then there is twice daily and the ever confusing 3 times a day.

Second there is how to remember when and how to take the meds. Take with food or not? At meal times or 8 hours apart or when? And once you know when, how do you remember when Fibro causes you to sleep/nap odd times, and be awake all night or not remember to eat.

Third there is when medicines stop working you have to get a new medicine and a new schedule. And then integrate that medicine into the schedule you may have only worked out last month or last week.

That is when you realize a medicine isn’t working, sometimes you don’t, sometimes the doc tells you the reason you are feeling XYZ symptoms is because your body has adjusted to a medicine.

Having a large number of medicines can cause this adjustment happen regularly through the meds you take so that you are never really getting the full benefit of the medicines.

I hate medicine, but I need them and I am relieved that I finally have them. But a magic wand would be so much more simple.

I am alone

[for BLOG SEVEN]

 

This was written a few weeks ago and is not how I am feeling right now but I wanted to share it because I feel it's important. 

I am alone.

I have Fibro.

I have known for 1.5 years. I have not been pain free for the past 27 years. Hurting and not knowing why, not even able to verbally express how I felt, what was wrong other than I was tired put a strain on my life. In fact it destroyed it. Demolished. Shattered. Humpty Dumpty was I.

Eventually my body couldn't fight the pain. It was too worn down and the pain was too much to handle. I was mostly bedridden. I could sometimes be encouraged to do something but I would suffer for days or weeks after.

My husband told me I "was not fulfilling my duties as wife and mother” because I "wasn’t cleaning the house and watching the kids". He put me out (kept my things though) and I was left alone, sick with no one. My husband and daughter had said they bet I wouldn’t make it a month alone.

I almost didn’t live. At one point the doctor did tests and said I was “literally starving” and that my body was digesting it’s self. I wasn’t surprised. I could barely lift a plate or glass of tea with 2 hands. How could I shop and cook?! I had to buy thin plastic plates to be able to pick up a plate to eat. Cooking was a frozen pizza while I rested as it cooked. And that was once a day. I couldn’t do any more than that.

I was so sick by the Fibro and my broken heart missing my family I could hardly lift my head. I missed seeing my children so badly that I was having hours of physical blindness.

The walk to class that should have taken less than 5 minutes took me 20 to 30 and I would spend all of class exhausted and resting for the walk back home.  I didn’t go out, I had no energy to.

The Fibro Fog was so bad it didn't take long for anyone who had spoken to me to avoid me. I don't have any friends, I was too odd. People thought I was special needs mentally. I am actually ... well I was very intelligent. Long ago. As a child. Now I can’t think of common words or forget what I'm talking about as I talk. I forget what I'm gonna say all the time. Not once in a while. All the time!

After checking on the computer what day it was, I would look at a notebook to see what I like to watch on tv that night. I couldn't remember. Even after weeks of the same show coming on at the same time on the same channel. I had my phone to alarm to tell me to get ready for class, what class and when it was time to go. Every day. Because even after weeks (months) of the same schedule I couldn't remember. Don't even ask me what your name is. I could not remember if my life depended on it. I have literally forgotten my own name.

I believe my brain was so overloaded with pain that nothing else could fit in there.

Who would want to spend time with someone who was in bed and tired all the time? (Of course had my family loved me, they would have gotten me medial help.) Who would want to spend time with someone who can barely walk? who cant remember your name after years of classes together? Who can't go out? Can’t do anything? Hurts all the time? Says random crap? Can’t remember everyday words? Who's family threw them away? How is that for an endorsement? My own child threw me away; put me out of her life and will never speak me to again. Yeah, who wants that person for a friend?

As I said: I am alone.

I am a Beast!

[BLOG SIX]


I am a Beast! and that's a good thing.

When my daughter was in high school and was impressed with how strong someone was she would say "He's a Beast!" 

Despite how weak I look being in bed for days or weeks, even months  at a time, I am a Beast. I fight pain and fatigue day & night. I have to live life under immense stress and some days I succeed. Some days I just survive the day and I am still a Beast. So those day I get out of bed and do anything are remarkable. 

Right now I am walking around with a broke foot and heightened pain. But so far I have made it to class and took some pictures for an assignment. Went to the clinic (and told them it was broke, they just confirmed it with x-rays afterward). I went to the store and got groceries. I climb 3 flights of stairs and I am a Beast. 

I didn't set out to be a Beast. This pain was thrust upon me. For decades I had no idea what was going on, but here I am, still alive and kicking...well when my broke foot heals I will be kickin again. lol 

But believe me, I wish I didn't have this pain,  it's not been a positive thing in my life in any way. Not even making me a Beast is worth it. I wish I had spent my life pain-free, Fibro free, Beast free. I wish I hadn't had so much pain I couldn't think straight. Wish I could have made better decisions, personally and professionally. I wonder what my life would have been like.  

Could I have been a success in a career that let me dress nice and meet smart people? People that I was able to converse well with. Would I be active in a sport or several? Would I do a marathon for charity? 

None of that matters because I am a Beast in this life I have. I won't ever get a chance to live that life I wanted because of Fibro that I didn't even know it existed. I just have to be proud that I am a Beast in this life I have.

I am a Beast, and *that* is a good thing.

I have a broken foot

I have a stress fracture on the top/outside of my right foot. Don't ask me how or when it happened because I don't know. It was sometime during the Fibro flare I just had. I was feeling so bad with the Fibro that I didn't care how bad my foot hurt. Sure I soaked it, even used Epsom salts, but the Fibro pain was worse... and all over. 
I felt like like I had spent a hot day running around an amusement park but with out the fun. There was a tingly exhaustion head to toe that wouldn't go away. I couldn't get comfortable. I couldn't think and my grades plummeted. 
I hate Fibro. I hate Fibro flares! They can be caused by something like doing too much, stress, weather or just happen randomly and you never know why. It's like every moment is Russian Roulette. You never know when it will strike, only that it will and it will take over what little life you had and wring you inside out. 

Boo is a super wonderful service dog

This is my service dog, Boo. He is a Psychiatric  Service Dog that helps me with my PTSD, Social Anxiety and Depression. He goes everywhere but class with me. So long as I get to class ahead of time and I am not in the halls when everyone else is, and I can sit in the front and pretend no one else is there, I do okay. But for places that are not a controlled environment like a store, I need Boo's presence. He has really saved my life and he keeps me moving with fetch even when I feel bad....maybe that's especially when I feel bad.

I hate Fibro!

When you are at the end of your rope, tie a knot and hang on! (Author Unknown)

[BLOG FIVE]

I don't think I have the strength to tie a knot. It's like everything is ending for me. No more financial aid so how am I supposed to live? I was barely making it with no frills and now I can't even make this month's rent, much less rent thru the semester and money for gas and toilet paper and such. 

I don't know what to do. I qualify for work study, but I can't work. I don't have the energy to make it somewhere each day and work for hours. I barely get to1 one hour class a day. If it wasn't for Student Accommodations I would fail out of school in the first few weeks. 

*sigh*

I hate Fibro.

I dont want to keep living in the condition Im in.

I don't want to keep living in the condition I'm in. 
Chronic pain. 
Pain everywhere.
Pain all the time.
No way to get comfortable.
No way to be comfortable
Nothing soothes.
Nothing relieves. 
There is no respite.
Even in sleep I hurt.
I dream of pain.
I wake up tired.
I wake up exhausted.
I wake up in pain.
I know I will do this again and again.