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.

05-22-16 Challenge

Describe my day in a six word sentence.  Don’t keep your troubles locked inside.

How do you describe yours?

5-16-16 Challenge

And I smiled…..I smiled because there was nothing else to do.  A smile helps to give you a positive attitude and if I couldn’t feel positive then maybe my smile will help someone else be positive or feel better.  The saying a smile lights up a room is true, think about it the next time you walk into a room and look around.  Who do you gravitate to – the person who is smiling or the person who looks upset, angry, indifferent?  So no matter how we feel we need to remember to smile not only for others but to pump yourself up too.  Your smile just might mean much more to someone else that you give it to that you realize.

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.

5-10-15 Mothers Day

a day of mixed emotions.  I am still blessed to have my Mother here at the age of 95 and I am a Mother.  But there is always a but 23 years ago on a Mothers Day I unfortunately had a miscarriage.  This is a life lost that I will never forget.  Every year I struggle with this holiday.  I guess I will continue for years to come.   

11-27-14 thanksgiving

Released and home my mind can reflect over the last 48-72 hours and I can be thankful for so many different things. First off I can be thankful for family that loves and supports me even though they don’t truly know what I deal with on a daily basis but they try to understand. In all reality they couldn’t know since I’m not even truthful with myself. But yet they do their best to understand and support me. I am thankful for the reasonable part of my brain that realized my system was out of control and needed guidance to get back to normal. I am thankful there are doctors and nurses who truly listen to what you say and try to help you in your time in need. Now I need to keep my brain on track and my emotions in check because this is about getting me well. At least as well as my chronic broken body can be. So on with the journey up now instead of down. I am someone. I am loved. I am love. I have life and reason to live. Do you tell yourself that or do you take it for granted that you know?

Truth 43 November 21, 2014 exhaustion

It’s the end of the work week and I am just so emotionally drained and exhausted this week.  Which really should amaze me since I probably had better ability to fall asleep than I have in awhile.  I still had my obligatory 2-3 wake up times during the night but I seemed to be able to crash out much easier than normal.  I just wish my mind would now take a break from itself and go empty.  Although I feel so empty and emotionless inside, my mind still is reeling with all different feelings and things to beat myself up about that I have not been able to do because of my invisible illness.  Although I look forward to the weekend, it will be a lonely one in a house full of people who try to understand but just grasp all that I am going through.  How could I really expect them to when I can’t even grasp it all myself.  So I put myself on auto pilot and start the weekend chores of washing and cleaning and hope at some point my brain will give me a break.

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.