Tag Archives: #chronic fatigue

In the know

Can they tell? Do they know?

I’m hiding in plain sight,

Does it show?

I say “I’m okay” or “Yes, I’m fine”

I’m so full of it,

But this pain is mine.

Will it stop or go away?

Or will I always have to fake it,

Each and every day?

It’s completely gained full control!

It rules the roost,

And has taken it’s toll.

I think it’s actually starting to show

It’s so hard to hold it in

And now most people know…

JKC

To help with research and treatment for Trigeminal Neuralgia please go to http://www.tnnme.com (Trigeminal Neuralgia and Me) to sign a petition to have the WorldHealth Organization (WHO) add Trigeminal Neuralgia (TN) to their “Health Topic List.

Hopefully one day I’ll get it right, or at least have fun, while about it I write!!

Life Can Sure Get Expensive!!

Wherever I look there’s something we need. Not even counting the five mouths to feed!! “Mom I need this,””mom I need that!” “Mom please, buy me that yoga mat!” “Seriously, why? We already have three??!” “Sure, but I need one that my friends can see!!” I don’t even want to figure that out. I’ll just have to decide: a smile or a pout. Some days it’s easier to just give in. It’s important to pick which battles to win. Does anyone know why it all happens at once? “I need shoes” “I need a haircut” “I need money for hot lunch!!”And don’t even ask about the cost of dance. Um…perhaps she’ll give basketball a chance…?! But I can’t really talk or point any fingers, as the shock at the cost of art supplies still really lingers!! My husband will need a beer or two, before I give him that receipt to view! And I wonder the best time let him know, that most of our son’s clothes just have to go! He just won’t stop growing, taller and taller, he’s not like his sisters, who’ve stayed a lot smaller. It’s just one thing and another, again and again, and I’m pretty damn sure that it never will end! Such is the fun of life I am guessing, besides I wouldn’t change it – my family’s a blessing😍😍

Tee Hee❌⭕️❌‼️

To help with research and treatment for Trigeminal Neuralgia please go to http://www.tnnme.com (Trigeminal Neuralgia and Me) to sign a petition to have the WorldHealth Organization (WHO) add Trigeminal Neuralgia (TN) to their “Health Topic List. 

Hopefully one day I’ll get it right, or at least have fun, while about it I write!!

Find The Time

It has been two days since my drawing class and I haven’t picked up my pencil yet. I have this strong pull to draw and keep saying, both out loud and internally, I need to do my “homework”, or I need to practice what we worked on Monday night, or the only way to master something difficult is to just do it!! I’m saying and thinking about this over and over again. Practice does make perfect! Even if this phrase brings up bad childhood memories about homework, among other things, it is true! Sorry guys, but the cat’s out of the bag! Our parents were right all along, practice really does make perfect (or at least better, practice makes you better…) The teacher gave us a few things to finish by next week and, as I said above, I haven’t done any of it yet! (Aren’t I the good role model – lol!!) I need to prioritize drawing on a daily basis. I’m doing this class for myself, something I’ve wanted to do for a long long time. So, it makes no sense that I haven’t been able to fit it into my week yet! Part of the problem (at l see it  in my head) is Guilt. I feel shitty so often and end up needing to lie down or sit and do nothing. And now, I want to take up some of that precious time for myself! Realistically and from a mental health perspective, self-care is super important and, intellectually, I know that.  But, obviously I am not that great at practicing what I preach! So, when my daughter and I get home (from dance) I’m going to practice for at least 30 minutes before bed.  Oh, and here she is, so, we are off! Short one tonight, but better than nothing!

To help with research and treatment for Trigeminal Neuralgia please go to http://www.tnnme.com (Trigeminal Neuralgia and Me) to sign a petition to have the WorldHealth Organization (WHO) add Trigeminal Neuralgia (TN) to their “Health Topic List.

Hopefully one day I’ll get it right, or at least have fun, while about it I write!!

Truly The Hard Part…

I need to listen to my body…

I need to hear what my tummy “says to me”,when making decisions, both small and large.

I need to focus on my breathing; to listen to my breathing.

My body is wise. My body is strong.

My body will take me where I need to be.

So, I will practice listening to the subtle cues my body is continuously giving me.   

I cannot ignore the pain;

I need to focus on it, feel it, understand it, and hear its’ needs.

This is to better help myself.

To find compassion for myself, compassion I feel in my tummy, my “gut” and in my heart.

I need to listen and pay attention:

What is my body telling me I need???

I need to listen to my body…

JKC

On January 11, 2006 I wrote this in one of my journals.  Yes, you heard me correctly, nine years ago, I wrote this! Has anything changed? Don’t you hear how prevalent this is…still? Talk about being stuck in a rut!! I feel like I know what to say and how to say it, but implementation, following through, making changes, whatever you may want to call it, not easy. Saying the words, easy.  Acting on the words, well, that is truly the hard part.

To help with research and treatment for Trigeminal Neuralgia please go to http://www.tnnme.com (Trigeminal Neuralgia and Me) to sign a petition to have the WorldHealth Organization (WHO) add Trigeminal Neuralgia (TN) to their “Health Topic List.

Hopefully one day I’ll get it right, or at least have fun, while about it I write!!


First Art Class Tonight

I really enjoyed my first ever drawing class! I’m feeling like I am pretty slow at completing the assignments, compared to everyone else, but I’m able to do it at home and he’s very okay with moving through the lessons at our own pace.   He does most of his beginner classes from the book called ” Drawing On The Right Side Of The Brain”. I was pretty excited about that. I have the book, and the workbook. I’ve tried to work through it  a few times, but I always end up not finishing it. I’ve actually looked up the author online to inquire whether or not they have any classes in Canada. The concept really appeals to me. I’m hoping that I come out of this course a competent drawer, maybe not amazingly talented, but able to actually draw. Now I’m going to bed.

To help with research and treatment for Trigeminal Neuralgia please go to http://www.tnnme.com (Trigeminal Neuralgia and Me) to sign a petition to have the World Health Organization (WHO) add Trigeminal Neuralgia (TN) to their “Health

Hopefully one day I’ll get it right, or at least have fun, while about it I write!!

From The Vault

Here’s something from June 29, 2000:

 

How do I step out of the box

That was crafted by you?

How do I push down the walls

When you don’t want me to?

 

When do I embrace myself

Without judgement or shame?

When can I shake myself free

And stop playing your game?

 

Why do I let you make the rules

Without seeing how I feel?

Why do I sit back and watch

While you roll the reel?

 

You say the rules are all made 

And it’s been said and done.

Yet no one seems happy

And no one has won. 

 

So we remain here in anguish 

Each praying for more. 

Can I take the first step

And open that door?

 

JKC 

 

To help with research and treatment for Trigeminal Neuralgia please go to http://www.tnnme.com (Trigeminal Neuralgia and Me) to sign a petition to have the World Health Organization (WHO) add Trigeminal Neuralgia (TN) to their “Health Topic List.

Hopefully one day I’ll get it right, or at least have fun, while about it I write!!

 

 

 

What Would You Say??

Yesterday an old friend of mine posted on Facebook about her dad dying and she was clearly suffering a great deal. She sounded so wounded and ripped apart. I felt her sorrow deep in my heart. In those hidden areas that we try to deny, the place where I hold and hide the fear about one day losing my own parents or my husband or, …well, you get the picture. So I felt a physical ache in my chest for her. It’s strange having things like Facebook, where we can semi-keep track of old friends and people who’ve moved in and out of our lives. So, you’re more connected than in the past. You see posts every now and then. You see their posts, some we may focus on more than others. But, you have a bit of an idea of where they’re at in their lives. So, when something tragic happens to them, regardless of how recently we’ve seen them, we can witness their experience. We feel for them, now – in the present. So, what do we say?? What would you say?? (Seriously, please let me know if you think it’s okay or over the top or what you would have said.)

This is what I said: 

I’m so sorry for your loss. There’s no “right” thing to say to someone, that will instantly make everything “okay”, after losing a loved one. I sure wish there was! I’m sorry to say, but it’ll be super hard and it’ll be a struggle. There will be good days and hard days, happy moments and moments when you feel overwhelmed with sorrow. But always remember he will be with you. Your dad will be holding your hand, rubbing your back, hugging you tightly, loving you always;  he IS with you. Yes today was probably super difficult and just sucked!! You may wish you could curl up in a ball and cry the day away. And you know what?? It’s okay!  Go for it!! You can grieve however you need to. Grief is one scenario when there is no right or wrong way to do it. You can feel whatever you want and need to feel. It’ll be a struggle today and everyday for a while, but you will get through it. Do not be afraid to ask your family and friends for whatever you need. If it’s time alone for a while, that’s fine. If you need time to be alone with your husband holding you, that’s fine. If you need to stand on top of a table and scream for a while, that’s okay to!! Whatever you need, do it! Again, there is NO right way to move yourself through this pain. Take it one step at a time. Don’t worry about an hour from now or later tonight or even right this moment, don’t worry about anything. Just take care of yourself, without guilt. Then gradually, over time, it will get a bit better. There’ll be a few less tears when remembering him and more smiles. He will be with you, is with you, every step of every day. He will guide you through each day. Don’t be afraid to follow your intuition and to do what you feel in your heart you should be doing or saying.  He is taking your hand and telling you what to do, listen. Listen to whatever you feel in your heart, because he is guiding you. I know I haven’t seen you in a very long time, but I’m certain that you’re still that strong, beautiful, kind and loving person that I knew way back when. It sounds like you have so much love and support surrounding you, ask them for whatever you yneed. They will want to help you. They love you. Most people aren’t sure of what to say or do for someone who has just lost a loved one. Tell them what you need to get through this. And, although it may feel impossible right now, you WILL get through today and then the next day and the next, even if it seems impossible, I know you will. Just one baby step at a time. 

God Bless. XOX 

To help with research and treatment for Trigeminal Neuralgia please go to http://www.tnnme.com (Trigeminal Neuralgia and Me) to sign a petition to have the World Health Organization (WHO) add Trigeminal Neuralgia (TN) to their “Health Topic List.

Hopefully one day I’ll get it right, or at least have fun, while about it I write!!

 

 

So Far So Frustrating…

Well, here I am trying out the new split Apple keyboard. I’m not sure what I think of it yet. I understand the thinking behind it, since keyboards are used less and less and most people are using smart phones and tablets these days. The thing that I’m really not that sure of is the actual size of the keyboard itself. I have big hands and, consequently, big fingers. My thumb already hits the wrong letters often, I’m not sure if I will hit the smaller ones even more! I am awake far too late again…I don’t know why I keep doing this to myself. I feel crappy as it is I don’t want to make things even worse!!

I am feeling very good about our decision to take our daughter to a dance school in the city. She has finished her first week of dance and has really

WHAT THE???  I can’t see what the h I’m typing right now???!!! The stupid keyboard is covering up all of this…for all I know, it has made a dozen errors and typos  and I can’t see any of them!! Too frustrating.  Anything and everything that I’m trying to do to move either the writing up or the keyboard down has not worked!! Well, I guess I can give a better judgement about whether or not I like the new keyboard…NOPE!! Not anymore anyway. I was kind of getting the hand of it and seeing how it makes sense, especially on a tablet, but now that I haven’t been able to see any of this…, well I believe that it speaks for itself!! Huh… I don’t know what to do. I don’t even know if this is actually working! So so so frustrating! You’d think that there would be an automatic function that just moves the written words up as the screen fills up…this is feeling ridiculous!! I’ve decided that I will keep all that I’ve written under here, regardless of errors!! I guess if I can’t figure out how to correct this, I will have to go into settings and revert back to the regular non-split keyboard!! Well, I guess I will write about our daughter’s dance experience tomorrow. It’s super late anyway. If anyone knows ho to correct this glitchy pain in the butt issue, please let me know!!! Night all!!

To help with research and treatment for Trigeminal Neuralgia please go to http://www.tnnme.com (Trigeminal Neuralgia and Me) to sign a petition to have the World Health Organization (WHO) add Trigeminal Neuralgia (TN) to their “Health Topic List.

Hopefully one day I’ll get it right, or at least have fun, while about it I write!!

Lots To Do!

Had a pretty full day today, which is good and bad. It is good because if I get a couple things finished, I feel like I accomplished something!! But it’s bad because when I overdue it I tend to pay for it with worse pain later!

I went to Michaels (did I spell that wrong??? It looks weird😕🙍🏼) today to buy the supplies that I need for my beginners drawing class that starts on Monday. I am super excited about this class, but at the same time I’m also pretty nervous!! I’m not that great at drawing ! lol – I guess that’s why I’m taking the course!  The strange thing is that I have always always wished that I could draw. I have a talented uncle who has used his art, numerous times in his life to support his family. My sister is also very artistic. It always seemed to come easily to her, which, I must admit, made me super envious!! Sadly I’m not naturally gifted with the artist genes. I’ve taken a few watercolour courses and loved it, but I always thought that if I knew more of the basics about drawing, I could improve my painting skills. And, I just feel like I should be drawing. It’s kind of strange thing really and difficult to explain. It’s just that For as long as I can remember I had this sense of being meant to do this, somehow mixed in with my writing…maybe this class will lead to the fulfillment of that dream. And it gets me out of the house, once a week, to do something fun for myself, which is part of my pain dr’s prescription!!

To help with research and treatment for Trigeminal Neuralgia please go to http://www.tnnme.com (Trigeminal Neuralgia and Me) to sign a petition to have the World Health Organization (WHO) add Trigeminal Neuralgia (TN) to their “Health Topic List.
Hopefully one day I’ll get it right, or at least have fun, while about it I write!!

Did this post not actually upload last name??? Huh…weird!!

Reconnect With Your heart!!

Can I talk to your spirit

Can I awaken your soul

Can I break through your shell

Or is your heart made of coal

Do you feel like you’re drowning

Sucked down deeper each day

Do you grasp for a life-line

Or just look the other way

Have you given up hope

Certain you have no choice

Feeling manipulated and hurt

As if someone’s stolen your voice.

It takes courage and faith

To reconnect with your heart

It may not be easy

But it’s a great poace to start

JKC

To help with research and treatment for Trigeminal Neuralgia please go to http://www.tnnme.com (Trigeminal Neuralgia and Me) to sign a petition to have the World Health Organization (WHO) add Trigeminal Neuralgia (TN) to their “Health Topic List.

Hopefully one day I’ll get it right, or at least have fun, while about it I write!!