Category: My Chronic Pain Life

30 Things About my Invisible Illness You May Not Know

frida kahlo

invisible illnessTo help promote Invisible Illness Week I am sharing the MeMe:

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Internal Disc Disruption/Derangement (IDD)
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: 2008
4. The biggest adjustment I’ve had to make is: Not being able to participate in even the most normal day-to-day activities as I am unable to sit, stand, walk etc. the majority of the time.
5. Most people assume: I look great so I must not be as disabled as I am.
6. The hardest part about mornings are: Waking up and realizing a have another day to persevere through.
7. My favorite medical TV show is: I don’t have one.
8. A gadget I couldn’t live without is: my camera.
9. The hardest part about nights are: waking up from dreams in which my body is working normally.
10. Each day I take __ pills & vitamins. (No comments, please) A couple of non-narcotic meds and many vitamins.
11. Regarding alternative treatments I: have spent thousands of dollars trying everything with no results…acupuncture, acupressure, cranio-sacral, Reiki, healing touch, plasma injections (that athletes use), prolotherapy, body-mind therapies, visualization, etc.
12. If I had to choose between an invisible illness or visible I would choose: hard to choose…I am grateful that I look “normal” but daily I wish I had a way of showing people what I am truly dealing with each and every second of the day despite my “normal appearance”.
13. Regarding working and career: So sad to know that I will never have either again so I have to find purpose some other way which is hard to do when I spend 90% of my day laying horizontally.
14. People would be surprised to know: that to get anywhere I usually have to lay horizontally in the back seat of my car and have someone drive me.  
15. The hardest thing to accept about my new reality has been: I may be this disabled forever and I am only 39.
16. Something I never thought I could do with my illness that I did was: keep on persevering through it all.
17. The commercials about my illness: there aren’t any.
18. Something I really miss doing since I was diagnosed is: sitting…to drive, to eat my meals, to watch a play, to fly, to watch a movie, to watch my nephew’s play sports, etc.
19. It was really hard to have to give up: the reality that I will never travel by plane ever again.
20. A new hobby I have taken up since my diagnosis is: blogging.
21. If I could have one day of feeling normal again I would: hop on a plane to Kenya…a lifelong dream.
22. My illness has taught me: life is not fair, good health should be cherished every single moment, nothing should be taken for granted.
23. Want to know a secret? One thing people say that gets under my skin is: “have you tried…”
24. But I love it when people: say “Wow, you are so strong to handle how you have to live your life. I bet not many people realize how hard it must be.”
25. My favorite motto, scripture, quote that gets me through tough times is: “At the end of the day, we can endure much more than we think we can.” – Frida Kahlo
26. When someone is diagnosed I’d like to tell them: stay strong, no matter how alone you feel, you are not. 
27. Something that has surprised me about living with an illness is: how there can be so few medical solutions or answers to my situation and so many other people’s. 
28. The nicest thing someone did for me when I wasn’t feeling well was: My Mom has repeatedly dropped everything to take care of me and comfort me.
29. I’m involved with Invisible Illness Week because: I really want people to learn not to make any assumptions about someone’s health based on their external appearance.
30. The fact that you read this list makes me feel: happy.

Peace and love,
Stephanie

One Lovely Blog Award – 7 Random Facts About Me

lovely blog award

I am honoured and thankful to Nicole, at Born a Lemon, for nominating me for a “One Lovely Blog” award! I still have a long way to go with my blog but this award encourages me to work harder at it. As per the award guidelines here are…

7 Random Facts about Me:

I own a glittery ten-pin bowling ball with my old bowling name “Princess” engraved on it.

I once took a Speedreading course so I am a super fast reader.

My most proud accomplishment was raising money for a young woman’s kidney transplant in Kenya. We are still very close friends and hope to meet each other one day.

I can’t watch or hear anyone brush their teeth. I get goosebumps all over and freak right out!

My middle name is “Gesine”. I am named after my aunt and grandmother who live in Germany. If I would have had a daughter I would have passed the name on to her.

I have numerous “tickle trunks” and love to dress up in wigs and costumes.

The most rewarding job I ever had was working for the John Howard Society, helping male prisoners prepare for their release from prison.

042_edited-1My nominations for a “Lovely Blog Award”:

Life in Slow Motion – the words on this blog so accurately capture what it is like to live with chronic pain.

Para Las Fridas – a fellow Frida lover and super talented woman who is a disability and human rights activist as well as visual artist. Her blog, too, shares what life is like with chronic illness and pain.

Chronic Fatigue Warrior  -the following isn’t a blog but she has my favourite Facebook group about chronic illness/pain. I love her artistic soul and she shares some great stuff!

Enduring Pain with Patience – this is a blog I just started following…the title says it all!

A Bowl of Cherries – Grace’s blog has already been nominated but I can’t help give a shout out to her and her blog…both of which are beautiful! She is a courageous woman with a big heart whose blog is a combination of her lovely photography and thoughts on life.

The Late Bloomer Revolution – Michelle’s lovely designed blog offers “complimentary seeds of inspiration, humor and mildly irreverent advice on how to awaken your inner bloom.

Sweet Sunflowers – A fellow photographer and life coach whose “helps her clients to visualize their dreams and take first gentle steps”.

Lolalina – Laura Gaskill’s serenely beautiful blog offers so much – inspiring “interiors, decor, food styling, flowers, art, and craft”.

B’s Bytes – a wonderful artist, writer and photography who shares a lovely sampling of each on her blog.

I know I was supposed to list 15 blogs but I only read a few at this point. I like to think of this as quality over quantity!

Guidelines for the One Lovely Blog Award:

  • Thank the person who nominated you for the award;
  • Add the One Lovely Blog Award logo to your post, your blog or both;
  • Share 7 facts about yourself;
  • Nominate 15 bloggers who you admire and consider “lovely.” Let the nominees know they have been nominated by commenting on their blogs.

 

 

A summer day with disabling chronic pain

Don't Give Up

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I am stuck in bed yet again. Unable to feed myself. Unable to move. The sun beats outside my window. I hear people laughing as they walk by my condo building. I imagine all the things “normal” people are doing on this summer day…working, driving, exercising, playing, walking, dining out on patios, etc. All things I cannot do. No, I am a prisoner in my body listening and watching the world pass by.

Oh how the hours drag. I listen to CBC radio and try to distract myself. I learn about the ceasefire in Gaza. Oh if only the pain in my body could have a ceasefire. I go on to Instagram only to see that my photo group’s topic for the day is “reflection” and realize that I can’t go anywhere to take a picture of a reflection and I sure wouldn’t want to take a photo of my reflection right now. I haven’t showered for two days. The pain I am in is clearly visible on my face. The fact that I didn’t sleep last night is evident with the dark circles under my eyes.

I go on Netflix and try to lose myself in the TV Series “The Killing”. Although the lead character is experiencing deep emotional pain I tell her I would trade my life for hers in a second. She can walk, sit and stand. She can leave the confines of her four walls.

The series ends and I stare out my bedroom window at the flowers wilting on my patio garden. I haven’t been able to water them for two days and in this extreme heat they are wilting as much as I am from the pain.

Is this a poem, a pity party, an essay or a journal entry? I don’t know. All I know is that I have to let it out. I have to share my experiences. I will risk the judgment, the embarrassment, whatever may be the result. I guess I am reaching out…hoping somebody somewhere will read this and understand the isolation and loneliness disability and chronic pain/illness create.

Disabled from chronic pain, I am questioning my faith.

Chronic pain and GodI am really struggling with the fact that I think I have finally given up on believing there is a God.

I just can’t possibly understand the purpose of my housebound life. A life where my spine requires I eat my meals laying down, a life without the ability to have children (whether adopted or my own), unable to drive, go to the movies, grocery shop, and a long list of other “normal” every day activities. Add to that days when I am unable to shower, make a simple meal for myself and walk from my bedroom to the kitchen. Deriving some purpose or point to my disabling chronic pain seems impossible. I ask “why would God allow this”? Why should anyone have to feel like EVERY day is a major struggle? Why should anyone live with this little quality of life?

For the first few years of dealing with chronic pain I held onto my faith despite losing the ability to fly, jog, garden and work full-time. I grieved the losses but pushed forward, striving to be grateful for what I still could do and believing God had a plan for me. Over the past three years as the level of my disability  significantly increased, my faith in God was often the only thing that kept me going. I would pray and tell myself I was not alone; that I always had God. I even had people trained in faith healing come and pray with me as I lay flat in my bed week after week. I longed to believe their words telling me that God is real, God is good and always with me. However, as my physical disabilities continued to decrease so did my level of faith in God. Now today as I lay here living a primarily horizontal life barely managing to do the basics of self-care each day, I realize that I have come to a place where I no longer believe in God.

I am saddened by the fact that I have lost my faith. I stare at my “Believe” sign hanging in the living room and wish I still could.

How pets help with chronic pain

chronic pain petsLiving with chronic pain would be a lot harder if I didn’t have pets. My two cats are the biggest blessings in my life as I deal with the challenge of a life with chronic pain.

So often with chronic pain we are physically isolated from others. For me, I am rarely able to drive and I often can’t participate in social activities with friends and family. I spend the majority of at home but I am not alone…I have two wonderful cats, Coco and Simon, who take the edge off what could be a very isolated and lonely existence.

Furthermore, with pets, one doesn’t experience the emotional challenges one can experience with friends and family. Often people close to us do not know what to say to those of us dealing with chronic pain or they say or do the “wrong” things. Additionally when we are with them, we may feel we have to put a mask on and fake feeling okay. On the contrary, pets don’t say hurtful comments or judge us. They are there to snuggle us, comfort us, and gaze at us adoringly no matter how we feel, what we are able to do physically, what we are able to accomplish or not accomplish, etc.

Our pets ask for so little yet offer those of us with chronic pain so much. Give your pet a little extra loving today to say thank you for being by your side through the challenge of living with chronic pain.

How have your pet(s) help you with your chronic pain?

Have your hobbies changed since you have chronic pain?

ChronicpainhobbiesLike most people with chronic pain or illness, I have had to say goodbye to many beloved hobbies. Gone are my world travelling days, my biking adventures, and, often, even my waterfront strolls. So I have had to search out hobbies I can physically manage.

My new hobbies have slowly evolved over the past few years. There are some I tried, like sewing, that ended up not being possible on a regular basis, while others like blogging which continues to be a fun and rewarding endeavour. Most recently, I took up knitting. Knitting had never appealed to me but now the prospect of a hobby that is physically possible was downright exciting! Did I seriously just use knitting and exciting in the same sentence??? Uh yes I did, and may I remind you I am under 40! That is how chronic pain changes your view of things. Now the opportunity to do ANYTHING new or creative (including knitting) is a wonderful discovery.

As human beings, no matter what our physical situation, it is important to stay inspired, productive, and experience enjoyment. So be open to new possibilities and new activities. Go on and try that Sudoku puzzle, pull out that sketchbook and pencil, ask your aunt to teach you to crochet or maybe even take up stargazing…you just never know you might enjoy it!

What new hobbies have you adopted since dealing with chronic pain? 

When Pain Flare-ups Cause Panic

Tomorrow my boyfriend arrives to visit me. He lives a 12-hour drive away from me and comes to visit every two to three weeks. Normally I would be very excited but I am in panic because I am having a major pain flare-up.

I am mad that my pain has flared right before he is coming. My mind races about how disappointed he will be that I am essentially immobile. I think about how I won’t feel well enough to go anywhere or do anything.  It amazes me that even though I have been living with chronic pain for the past five years, I still immediately go into a negative panic mode when my pain has a major flare-up. The thoughts race so fast I don’t even realize they are happening…

“oh no, how long is this going to last?”
“am I getting worse?”
“I can’t take this any more?”
and
“why me?”

These panicky questions are then always followed by the never-ending attempt to figure out what exactly caused the flare-up…

“was it that I drove?”
“is it this damp weather we are having?”
“was it from picking up the cat?”

So my mind races through every single action I have done in the past two days trying to figure it out. I know from past experience that I am rarely ever able to pinpoint an exact cause, but nevertheless my brain desperately tries to make sense of what is happening in my body. My mind wants control. That is the thing when you live with chronic pain you lose control. For type-A people like me losing control is VERY hard.

I am learning, however, that if I want to stay calm, at peace and in a positive frame of mind, I need to relinquish my desire to control what is happening inside my body. I have to let go and become a neutral observer of the pain. Instead of worrying about why the pain is there and fearing it will last forever, I remind myself that the flare-up will pass and simply state “for right now this is how my body is feeling.”

Although this counteraction of  “catastrophic thoughts”, as my therapist would call them, feels nearly impossible when my body is screaming in pain and my mind wants to continually yell “why me?”, I have learnt that the “why me?” question, along with all the others, don’t get me anywhere but depressed, anxious, and yes, even suicidal. Furthermore, stressing over the pain and analyzing every detail of it is not going to lessen the pain or make the flare-up end any sooner. 

So tonight as I am faced with this surge of pain, I acknowledge that I may not have control over the pain but I can control my reaction to it.

The journey of chronic pain

I have had a life-long passion for off-the-beaten-path travelling. By the age of thirty-five I had travelled to eighteen countries and my list of future trips was lengthy and included a camping adventure in Kenya and Tanzania. In October 2008 little did I realize when I stepped off the plane from a trip to Europe that this would be my last trip overseas indefinitely. Four days later, my recurring back injury put me in a state of disability that lasts to this day.

Because I am now unable to sit for even the shortest amount of time, travelling overseas is an impossibility. Now even a 30-minute car ride to my mother’s is an ordeal requiring me to lay a custom mattress flat in the back seat of a car while someone drives me to visit her. Long gone are the dreams of exploring other countries. Now I just wish for the ability to sit for the car ride to a nearby town to watch one of my nephews hockey games or to simply to be able to drive myself to the grocery store only a ten-minute drive from home.

The sadness, anger and depression that come with the loss of the ability to travel can be overwhelming. Often these feelings are triggered when opportunities arise that I am unable to participate in. Like two weeks ago when one of my best friend’s decided she wants to celebrate her 40th birthday, with our fellow girlfriends, in Las Vegas. I now have to endure listening to every detail of the planning of the trip and then hear the stories of the adventure upon their return.

Not even a week later, I received a group from my aunt saying she was organizing a family reunion in London, England in 2015. Each of my family members responded to the group email sharing their availability while I of course did not even bother to reply. I understand she was including me to let me know that I was invited but in some ways I wish I never even knew about the plan.

At these times the sadness becomes overwhelming and like so many people dealing with chronic pain, illness or disability, I ask “why me?” over and over. I try to figure out the lesson I am supposed to learn from my situation but in the end I am unable to make any sense of it. I try to be gentle with myself and recognize that these feelings are only to be expected; after all, the losses I have experienced are great. Anyone would be sad and question why it happened to them. In other words I normalize the feelings.

For myself, or anyone else though, I know it is important to not get stuck in this place of questioning and sadness. I allow myself to ask “why me?” and feel the sadness but then I compel myself to try and let go, move forward and get in touch with the present moment. I do this by concentrating on what is happening right now and identifying what I am grateful for, no matter how small. For instance I focus intently on the joy I feel from petting my cat who is curled up beside me or I call my nephew and listen as he excitedly tells me about his latest hockey game.

I reflect on my adventurous travels, each trip planned with the help of travel guidebooks and I realize that I am on a journey now but without any guidebooks. I continue on this chronic pain voyage as if I have been dropped off in the middle of a jungle in an unknown country; unsure of what to do, where to go, wondering if I will be okay. In the jungle I know I would focus, stay positive, take one step at a time and, most importantly, I would take time to appreciate my surroundings no matter how scared or lost I was. So that is exactly what I will aim to do on this, my chronic pain journey.

Do you struggle with travelling due to chronic pain? What do you do to stay positive and move forward? I would love to hear from you.

Raw and truthful sharing about pain and disability

August 29, 2013

I have wanted to add a blog portion to my website for the past few years but each time I considered it, I believed that unless I was going to share a positive outlook on dealing with pain and disability, I should not write one. I knew that it would be impossible for me to put forward a rosy outlook so I did not write a blog post until now. Today, however, I am giving myself the freedom to start writing a blog that is a raw and truthful sharing of how I struggle to deal with my pain.

Don’t get me wrong, I try and be positive but I truly have been longing for a place to share my inner suffering, my struggles and my frustration with the limitations this disability puts on my life.

I have shared these feelings repeatedly with my very supportive friends and family, but how many times can I burden them with my recurring feelings of loss, depression, anger and sadness. These feelings that continue to ebb and flow but are always there on a daily basis.

Even as I write this post I imagine people reading this and thinking, “she really needs to accept her situation and move on”. The fact is I have been trying to move forward for years and I have made only small progress in doing so. I find it progressively harder as my level of disability continues to increase.

In the last few days as I have been laying here, bedridden due to my pain, I decided maybe it is time I try and see if blogging is one way of helping me move forward. Perhaps it will be the avenue that allows me to let go of the burdensome feelings I carry around with me. In fact, I already feel lighter as I come to the close of this, my first, post.