9-23-16 Messed up

How much more can my life get messed up? Years of severe migraine pain with limited to no relief. Then found a major trigger along with getting my first Botox treatment and I actually felt slightly human again. Only to fall back into severe migraine pain when insurance and money came into play for future treatments. I gave up on everything, stopped all my medications giving up on life and began to exist. Life changed once again and insurance had a major overhaul with great benefits. I got back to my physician, got back on medications and got set up for Botox. My injections were in July and the weather was then against me for any immediate relief. But over the last two to three weeks I have been feeling better pain and migraine wise. Now one would think that you would be jumping up and down rejoicing. But instead I’m walking on eggshells. I’m just waiting for the pain to start instead of enjoying the days that I have. I still have such chronic fatigue that I am still unable to enjoy the break. Then my mind clicks in. It reviews my life, my ups, my downs and tricks me into darkness. Instead of coming up from the darkness with feeling better and less pain, the darkness creeps closer. With relief I realize more what I have missed, what I am unable to do. How messed up can this be? Why can’t I just enjoy the low pain days and do what I am able to do? Why does the darkness fall and the light go further away? Messed up is all I can say. Messed up.

9-20-16 What Really Matters?

Today’s journal prompt – what really matters? This is something you don’t think about much when you are healthy and active in your life. You take so many things for granted and you just do and go without regard to what is coming next. When you are ill though, you think more about what really matters. Your body requires you to make choices. They aren’t always choices that you want to make but you are forced to do so. This is when the really matters comes into play. Will going to the event really matter? Will you really make a difference, will you really miss out? Sometimes your mind will make you feel all different emotions when you are deciding on what really matters and you hope it gets better with time. Sometimes you body doesn’t even give you a choice, it has decided that even though it really matters to you, it is not happening. Do you think about what really matters? Do you have to make difficult choices in regards to this or does your body make those choices for you?

8-10-16 August Journal

Defeated again.  Nothing shuts me down than having to stay home sick.  Previous to my invisible illness I very rarely took off for illness and now almost with a vengeance I refuse to take off for a sick day but today my body is not cooperating.  Yesterday  I froze all day, no matter what I did, I couldn’t get warm.  I was the only one in the air conditioning wearing a fleece jacket with another jacket draped over my legs.  I was so happy to walk out into the hot air, getting into my hot car hoping it would warm me up.  It wasn’t until about 9 pm with a fleece jacket on and a fleece blanket over me for hours that I finally felt a little warmer.  I slept well last night but upon waking my body didn’t want to move.  Feeling like lead throughout my body holding me down, stomach being hand twisted I had to call “uncle” and stay home.  My fingers don’t even want to move to type this and I stop every few words to rest.  Needless to say my head is also not cooperating  and the pain resounds all around.  I am so used to pushing myself constantly through the pain but today I have to realize I am sick and do what a “normal sick person” does, relax and take care of myself, don’t push myself to accomplish anything.   What do you do on a “sick day”?  What do you consider a “sick day”?  Why is so hard when you consider yourself sick every day to allow yourself to be sick on a given day when your body is telling you loud and clear to stop?

6-5-16 #MHAM

#Migraine can and does kill through stroke and suicide. #MHAM

Right before my 40th Birthday I was admitted to the hospital with chest pain, weakness on my right side, etc.  The final diagnosis was severe migraine but it wasn’t my normal neurologist and I wonder if he would have diagnosed me with migraine stroke.  It was a internal medicine physician who was not familiar with my entire case.  We went to the closest hospital with the fastest ER time back then.  There are so many symptoms of migraine that resemble stroke, it is hard to tell the difference.  I think many migraineurs put off their symptoms because they deal with them all the time and just think they are migraine related.  For me it would be difficult to run to the ER or the Doctor every time I experienced something.  As I sit here now, the right side of my face feels numb and like it’s sliding down.  I have ringing in my ears, someone kicking me in the back of the head and pain across the right side of my face.  I am nauseous, anxious, irritable and totally exhausted but I just only got out of bed.  This is just a day in my life.  Outside it is humid and 90% chance of rain/thunderstorms all day.  Can we say triggers!

On the topic of suicide, I haven’t personally known anyone but there are people within the migraine support groups who have taken their lives due to the constant pain from this invisible disease.  It not only plays with the physical parts of your head but it plays with the emotional side of your brain.  Living with daily pain in your head is a battle not only with the pain but with yourself as to why you want to continue this way of life.  Many of your days are fighting with yourself to keep moving forward.  You isolate yourself with your pain from everyone else and it plays on your mind how much you are missing out on.  This will be a daily battle, some days easier than others.  Today will be difficult because I am already missing out by having to stay home.

5-15-16 Challenge

What are you looking forward to?  These were words that used to excite me.  I used to look forward to many different things, vacation days, birthdays, holidays, etc.  Now I don’t look forward to much, I take each day as it comes.  I have scheduled events in my life concerts, days off, camping, life events but I worry about them coming up.  I worry about how I am going to feel that day and how much I might have to fake feeling good.  I worry about how many people are going to question me about my illness.  I worry about the answers I have to give because many times it is not the truth.  How often do people want to hear that you feel bad day after day after day?  Looking forward used to be a great aspect of life but things change.  What am I look forward to – seeing what tomorrow’s questions are for this challenge because I didn’t realize how much I missed writing this blog until I stopped it at the beginning of the year because it had seemed so much like a chore and I was saying the same thing over and over.  Maybe I still am but right now, I’m looking forward to it.  It’s a way to say what I really feel without having to speak the words directly to someone else.  Thank you all for listening.  I hope you have something wonderful to look forward to.

Truth 42 November 19, 2014 Empty

When you are rock bottom and feeling all empty inside, you mind can ask yourself so many different questions.  My mind has been questioning itself over and over.  A big saying that goes through is in order to love others, you have to first love yourself.  How can someone with a broken body love themselves?  I ask myself this over and over.  I think I used to love myself previously, I guess I never questioned it.  I felt love for other people and I feel that I still feel love for other people but with just more of an empty feeling along side of it.  I guess this is the emptiness of the love I have for myself.  Do you love yourself?  Do you feel empty inside?  I also noticed I no longer smile much or laugh much.  I used to have a good sense of humor and loved to laugh and have fun with others but I pull myself away from it.  I no longer even enjoy being around other people and prefer to be alone.  This has been a gradual pull but it really is noticeable to me now with such an emptiness inside.  Do you enjoy being around other people?  Do you laugh and smile?  Never take these things for granted.  Enjoy every moment of your life that you can smile, laugh and love others.  You never know when an accident can happen that you can be broken and then robbed of all the enjoyable things in your life.  I am just so empty on the inside and the out.  My mind knows that I am broken and need help but yet it just wants to hide away from everyone and everything.  So I take it one day at a time, baby step by baby step.

Truth 41 November 17, 2014 meltdown

I always said I wasn’t going to have a breakdown or go through what I saw a sibling go through.  I always told my brain we wouldn’t go there.  Today we have gone there and we have to admit it.  When you can’t control your hands shaking and your insides are shaking just as bad, you finally have to admit to at least yourself you are melting down.  I slap my normal face on and get up and go about my business as best I can, when in reality all I really want to do is stay in bed and not move.  The weather has amped up with a good solid rainy day today putting my head at a level 10 plus.  The goings on around me have amped up so that I no longer know who I am.  I always stated that after my accident and being diagnosed with my chronic invisible illness that I lost myself and was trying to come up with a new me.  But today I am totally gone, only existing as a shell.  No feelings, no emotions other than complete sadness and anxiety, panic and a total need to just go to bed and never leave.  So I am numb, mind dead and an empty shell of a person just moving through the automatic movements of the day.

Truth 37 November 11, 2014 Living the Nightmare

Some days I just wonder how I can’t be dreaming all of this.  How can all of this be real for one person.  What did I do to deserve all of this?  Why am I drowning so in my own thoughts, feelings?  I just look around at what other people are doing and what they are given and I wonder why I was gifted all of the things I have.  Yes, of course, part of me is jealous, how could it not be when comparing my life to others.  Not everyone walks around with pain in their head 24/7. voices talking to them about everything all at once and nothing in particular all at the same time.  I know it’s not right to do any of this, you shouldn’t compare or want what others have but just a little slice of peace sounds wonderful to me.   I feel right now like my life is a nightmare.  The harder I try to move forward, the worse it seems to get.  The only thing I look forward to anymore is lying down in my bed at night and collapsing.  Even though I know the voices are going to take over in my mind, the thought of getting away from everything and everyone makes it worth it.  I want to withdraw from society, live in a cocoon.  But alas that is not reality and the small portion of true reality left knows that and brings me back.  But how I hate living this nightmare of a life.  How I want everything to be different.  When of when, will that happen?  Never and in time my brain tells me all at once and you see that is how this works.

Truth 34 November 8, 2014 Home Alone

As I sit here home alone I look around at all of the things I could get done and think back to when the kids were little and how I would have loved to have some time alone to get chores accomplished and yet I cannot move myself from the couch to accomplish anything.  So I wonder what happened to me and then I remember, oh yeah, it’s that invisible illness that I was gifted with over 10 years ago that has stolen my soul and taken over my life in more ways than I wish to admit out loud.  Slowly the tears roll down my cheek and the sadness washes over me, what the hell happened to me.  Gone my mind says, you are  gone.  I want to move, I want to get up and do all the things needed to be done around a home but I am just so tired.  You see, I didn’t sleep well last night or the night before or the night before that or that or that or you could keep going on and on.  My head pounds and my stomach churns and the tears just slowly flow and I hope as they do the sadness will leave my body but I know it won’t.  Yearning for the old me does me no good because all I do is become more frustrated.  Trying to find a new me has me at a loss for I have lost my self esteem along the way and I am so overwhelmed I don’t even know where to begin to look.  So I sit here and type words on a page, hoping something will come to me, pop into my brain and trigger my memory and help me along.  But the tiny voice that speaks out from the back of my brain only says – chin up buttercup, it will come, take baby steps, don’t push yourself.  So I think what should I do first, the wash is now done.  I will finish this and let me OCD kick in and pick things up that are out of place, then gather up the dust rag.  Such a beautiful day outside the window pane, sun shining, trees in beautiful fall colors but I’ll close the drapes to help filter out the bright light for my eyes and my head, I’ll take baby steps around the house for I have all day to myself to pick up.  Maybe along the way I’ll find me, one can only hope.

Truth 32 November 4, 2014 Change is difficult

So many things change on a daily basis.  At work things are constantly changing and we do our best to keep up with the never ending rules, regulations and protocols necessary to go with these changes.  The most difficult change to deal with though is when you change.  It’s okay if you desire the change and are trying to change yourself but when you are forced to change due to an accident or illness visible or invisible that takes over your life, the change is difficult.  You have not asked for this change and this change is usually not something that brings happiness into your life with new and exciting things to do.  It usually takes every day normal operations away from you and replaces it with something that is deficient and painful compared to your past.

So I have difficulty with change, not the work kind of change, but changing myself.  I wallow in myself and all that I am deficient in.  I grieve for the lost me and can’t get over the loss.  My mind though knows I need change.  It knows that in order to move forward in any sense of the word and to have any type of a life, I need to try to change and the biggest change is going to be my attitude/emotional balance.  It seems like such an overwhelming task that I just keep putting it off for another day and each day I do that, I know psychologically I am not helping myself at all.