Chronic Illness and the Holidays

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As we move into December and the start of the Festive season, it can be a time of great stress for those of us who live with Chronic Illness. I wanted to share some strategies for getting through this time of year without increasing your pain or stress levels.

Here are some of my top suggestions:

Plan In Advance

As Christmas, Hannukah and New Years get closer, it’s a good idea to start thinking about what you’ll do and where you’ll go. Are there family traditions that can be changed in regards to who hosts events? If it’s been you in the past that hosted a large group, perhaps someone else could do it this year and you could be the guest. Start to prioritize the things you most want to do (attend a Santa Claus parade, a Festival of Lights, Religious Services, visiting certain friends, etc.) and then build your schedule around that.

Keep Managing Your Chronic Illness

Once you have a schedule in place, you can start building in rest days before and after events. Don’t forget about the day of the events themselves and how you need to ration your energy to have the greatest chance of being able to participate.

Go to your scheduled doctor’s appointments and take care of yourself. It’s so tempting to cancel these things at this time of the year, but don’t. Make sure you are taking your medications as prescribed. If you have special dietary needs, keep them in mind when eating out and preparing meals. Now is not the time to go off a medically necessary diet.

Make Lists

Make lists of things you need or want to do. Prioritize those lists. Delegate and let some things go. Take advantage of online shopping to save your energy.  And don’t be a perfectionist. There’s no room for perfectionism in a chronically ill person’s life.

Pace Yourself

If you know you have a party to go to in the evening, that morning is not the time to scrub out your tub. This is another area in which I struggle. Pace yourself throughout the day and over a period of several days. If you are planning on going shopping with friends on Saturday, plan on Friday and even Thursday being light activity days.

Be Honest

If you’re going somewhere else to celebrate and you have energy limitations, let your host know that you may not be able to participate fully in the activities. If you aren’t able to host at your house like usual, ask others to chip in and host instead. Being honest with people in your life about your limitations can be helpful for avoiding hurt feelings later. Think through what you need to explain to others ahead of time to allow the events to go smoothly.

Enlist The Help Of Your Spouse Or A Friend

Enlist the help of your spouse or a good friend to be part of your team during the holiday festivities. This should be someone who knows you well and will be able to read your responses to situations. This person will help you feel safe in the situations you’re entering and will watch for any indication that you aren’t feeling well.

My husband Ray, serves in this role for me. Another friend or family member could also do this. Basically, Ray notices when I’m getting worn down and my health is going downhill. He’s particularly aware of my flagging energy, and will often ask me how I’m doing to gauge whether it’s time to leave. I also know I can tell him I’m ready to go and he’ll take me home immediately if I need to leave.

Be Okay With Your Plans Changing

This one is a big part of normal life with chronic illness. Flexibility is important because things can change on a moments notice when health issues are a concern.  Even if you have everything planned and scheduled, do yourself a favor and release expectations. If you are religious, prayerfully plan your schedule but then hold those plans loosely. Ask God to cover you with perfect peace in whatever situations you may encounter with your health over the holidays.

Ask For Help

Ask for specific things. I don’t like to depend on anyone for help, but if it means making the holidays more manageable, I think it’s worth it. Sometimes, people will offer to help, but they don’t say what they are willing to do. Having a list ready with ideas of what others can do for you will come in handy when people make those kinds of offers. Do you need help with laundry? Running errands? Housework? How about help with wrapping gifts? Think about all of your regular and holiday tasks and delegate some of them to family members and willing friends.

Connect With Others

Try to make time with friends you might not otherwise get to see, even if it’s just for a short while. Have a quick get together at a coffee shop, chat with a girlfriend about a sappy Christmas movie you’ve both watched. Make an effort each day to reach out to someone. Text, Facebook, instant message, make a phone call. You don’t have to carry on an hour-long conversation, just a brief connection can be enough.

Find “Me” Time

Build in some time just for yourself during the holidays to read, craft, rest or do whatever else will help to give you some “me” time. It’s important to recharge your batteries. If being surrounded by people is what energizes you, then do that…it’s all about what makes you feel good.

Make Time For Your Spouse Or Significant Other

It’s so important to carve out time for the two of you. With all the busyness going on around you,  communicating can sometimes take a backseat, especially if you aren’t feeling so well. Be honest about how you are feeling and ask for help when you need it. Try to sneak in a few inexpensive “dates.” Drive around and look at the Christmas lights, stop for some hot chocolate, attend a Christmas program together. Just enjoy each others company.

Laugh As Much As You Can

This one is one of my favorite pieces of advice. Laugh. Just do it. I’ve found that no matter how horrible I feel, laughter can be a source of medicine for me. Laughing helps lift my spirit and makes me feel more alive. Try to enjoy yourself while you celebrate the holidays, and be sure to include laughter in your days!

Remember The Reason For The Season

It’s so easy to get caught up in the baking, partying, shopping, decorating, etc., but that’s not really what it’s all about. If you are a religious person, keep attending church services and go to the special holiday programs. Listen to religious Christmas songs along with the pop tunes. If you aren’t particularly religious or are a nonbeliever, meditate, attend holiday community events, and enjoy finding ways to nurture your own spiritual side.

Remember….There Is Always Hope

SoCS – A Day In My Life

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I belong to a Facebook group called the Fibro Blogger Directory and we’ve been challenged to send in and answer questions relating to Fibromyalgia in the month of November. I wanted to share this question and then answer it:

What is a typical day like in your life?

From Pamela in Langford, BC Canada

It’s 2:30 in the morning and the house is quiet. I’m sitting in my recliner with Dorie, my cat on my lap, and the TV on the CatTV channel on YouTube. I went to bed at midnight but I only managed a couple of hours of sleep before I woke up, so here I am again, back on the computer in a quiet dark house. The only sound I hear is snoring – from both husband and cat, and I shake my head, not quite laughing as I listen to them both. I wish it was me, but once again, this means Wakefulness has won this battle and persists in keeping me away from Dreamland. I hurt all over, every muscle is aching and Painsomnia wins again.

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So starts a typical day in my life. I live with the Chronic Pain of Fibromyalgia, osteoarthritis and several other conditions and it’s often the painsomnia from these conditions the keeps me awake at night. At this point, I’ll probably just stay awake until Ray wakes up in the morning at 4:30. There’s no sense trying to sleep now because I’m too awake. So I do what I always do; I surf the Internet, I go on Facebook and I write; either on my blog or for one of the various articles I’ll be submitting to other publications. I often find it easiest to write in the middle of the night; my thoughts flow freely and things come to the surface that are easier to write about, whether they be memories or new subject matter.

At 4:30am the alarm in our bedroom goes off and Ray wakes up. I head to the kitchen and put the dishes away from last night and make a cup of coffee for myself before heading back to my recliner while he finishes showering. I stay here until he leaves for work, so I’m out of the way. He finishes his shower and comes to kiss me good morning, then makes his breakfast while I stay out of the way. I am busy updating my Facebook page and morning Devotionals. We exchange kisses and he heads out, and then I force myself up from the comfort of my recliner. I have some cereal or yogurt for breakfast and enjoy another cup of coffee before I get serious about doing some work. Much of my day is spent on the computer generally taking care of blogging, moderating a forum I belong to, checking my email and visiting Facebook. No real change from the wee hours of the night!

At 7am, I take my first dose of medications for the day. Every hour, I make myself get up and do some stretching. My body screams back in pain, but if I don’t do this my muscles will atrophy. I also try to get one major chore done around the house, whether that be sweeping the floors, scrubbing the bathroom, vacuuming, etc.

Lately, I’ve been dealing with back pain and spasms in my SI Joint on the left side and an area around the left facet joint in my lower back. The pain has lasted for 2 weeks and I’m off to see my Pain Specialist on the day of writing this (Oct. 22nd) as well as my family doctor, plus I’m meeting a friend for lunch. It’s a much busier day than usual. Normally I would eat lunch around noon, and then check the mail at 2pm – the highlight of my day!

While most days are spent at home, I do have doctor appointments on a fairly regular basis. I also have work that I do for my volunteer positions, including conference calls that happen in person and online. As part of my health journey, I go for regular massages as well, and there will probably be some physiotherapy appointments coming up too so my calendar will start getting busier. My rule of thumb is to keep an open day after every day that has something planned so I can rest, otherwise, I become too fatigued to manage.

At 3pm, my alarm goes off to take my afternoon medication.

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I often lay down for a nap at this point and can usually sleep for about an hour. When I wake up, I’ll read for a while, or watch something on Netflix, and if I have the energy, I’ll start prepping dinner. We do a lot of prepared food in our house as I don’t always have the energy to do a lot of cooking. M&M Food Stores get a lot of business from us! Tonight though it will be leftover Chinese food, so no worries about having to cook! I’ll get back on the computer until Ray is home, and then we’ll sit down for dinner and talk about our days.

The evening is quiet. Ray plays a game on his computer and I continue to work on blog posts and hang out on Facebook, etc. or read a book or magazine. Dorie, our cat curls up with me and it’s a comfortable place to be. I take my evening medications at 7pm and by 8:30pm, Ray is heading to bed. I’m tired, but I know I’m not ready to sleep, so I tuck him in with a goodnight kiss and head back to my recliner. I’ll do up the dinner dishes shortly and then spend the rest of the evening on the computer, chatting with friends, reading magazines, and unwinding. I take my final medications at 11pm and turn off the computer. Sometimes I read, and sometimes I just listen to relaxing music until midnight. That’s the end of the day for me. I crawl into bed, my body aching all over, and pray that sleep will come. I drift off, finally and start dreaming…

It’s 2:30 in the morning and the house is quiet. I’ve just woken up…and there will be no more sleep tonight.

There is always hope

 

 

A Little Bit More Joy

This past summer, I wrote a post called That Which Brings Me Joy in which I talked about my hummingbirds and provided a list of things to do which could bring some joy into your life.
My hummingbirds continue to bring me much happiness. I bought a different feeder for them which the wasps that plagued me can’t get into, and I also bought a wasp trap which I’ve baited with a double concentrate of sugar water. The birds are happy, the wasps not so much, but there aren’t as many of them now with the weather cooling off as we head into fall.
I wanted to continue my list of things that might bring happiness into your lives, so here goes. I hope there are no repeats!!

  1. Write a thank-you note to yourself (on your best stationery, of course).
  2. Venture outside for a five-minute walk.
  3. Indulge in a delicious piece of chocolate (or a fresh colourful smoothie).
  4. Find a piece of jewelry you haven’t worn in a while – feels just like vintage shopping!
  5. Pick fresh flowers or send yourself a little bouquet of favourite flowers.
  6. Visit a funny blog, watch a movie, or spend time with someone who makes you laugh.
  7. Find serenity at a favourite local spot (ex. a park, a lake, a coffee shop, a little nook in your house or office).
  8. Bake a favourite treat with a family member or friend — or bake alone and surprise someone special with yummy treats.
  9. Discover an uplifting and fun song – something new.
  10. Slow down and enjoy a long brunch.
  11. Try a new fitness class.
  12. Indulge in watching tv or reading a magazine – guilt free!
  13. Declare a vacation day – write it BIG on your calendar so you get to anticipate this upcoming personal time (a vacation day can fall on the weekend).
  14. Do a good deed — help someone else find joy.
  15. Treat yourself to a favourite cup of coffee or tea – enjoy the flavours and activate your senses.
  16. Be goofy! Dance around your room to your favorite music.
  17. Explore the inspirational and joyful blog, Kind Over Matter.
  18. Get rid of two items in your physical environment that make you feel negative.
  19. Bite into a piece of fresh fruit.
  20. Wear a color that makes you feel confident and joyful!
  21. Write down three things that you are grateful for.
  22. Call a supportive friend – or reconnect with someone you haven’t spoken to in a while.
  23. Start a book that you’ve been meaning to read.
  24. Browse books at your local bookstore.
  25. Learn something new (ex. a new hobby or craft).
  26. Write a thoughtful comment on a personal blog you read (comments mean the world to me – hint hint!).
  27. Create a list of 10 things you love about your significant other – surprise him/her with the list.
  28. Write a hope note and leave it for someone to find.
  29. Connect with your fellow tweeters. Send a tweet with a joyful message.
  30. Create a list of 10 things that make you happy – your own personal “joy” list.

I hope you enjoy this list and make good use of it. If you have other ideas or suggestions, leave them in the comments. Thanks, and remember…
There is always hope

A Comedy Of Frustrations

I have just been through the very painful experience of having a computer crash and losing all my data. My backup system failed and I estimated that I lost 2 years worth of work and files, including photos that I can’t replace and documents that I have been working on for quite some time.
I try to “write ahead” when it comes to posts for the blog, so I’ve probably lost about 10 posts as well. I usually write in Mac’s program Pages, and then transfer them over to WordPress afterwards, mostly because I have more editing options in Pages. I don’t know if I’ll do that in the future. And because of the brain fog that goes along with having Fibromyalgia, I can’t remember most of the contents of them, so can’t just recreate them again. Frustrating doesn’t even begin to explain how I feel right now.
The whole thing started when I realized I had accidentally deleted a folder into the trash, and that I had emptied the trash. I went online and found instructions for retrieving said folder. Now, I use a MacBook Pro, so sometimes these tasks are a lot easier than when you use a Windows-based computer. I also was still in a drugged up mode after having had a dental procedure done the day before. These two things should not go hand in hand, but I thought I could at least follow the instructions without too much difficulty since I knew I had a backup. I managed to get to my Disk Utilities section of the computer but as I attempted to retrieve the folder from the trash, it would appear that I wiped out my entire hard drive instead.
It was the drugs. I think I probably had a moment or two where I drifted off to sleep and did some other stuff that I shouldn’t have done. All I know is that I had no folder and no hard drive in less than a minute. Wisely, I turned off the computer, panicked appropriately, and had my husband call a computer guy when he got home, so we could take it in and have it repaired. I wasn’t too worried, as I knew the computer could have the OS installed again, and I had the backup files at home.
So, that’s what happened. Off went my little MacBook Pro on Saturday morning, we had a busy weekend going for a motorcycle ride, then heading to Vancouver on Sunday for a short visit with our daughter Ashley and to meet her boyfriend David for the first time. It was a long wet trip so we had to take the truck, but both times on the ferry, I was able to stand outside and enjoy the view…including a gorgeous rainbow on the return. Then on Monday, I had a dreaded dentist appointment, but Ray was able to pick up my computer for me…with the hard drive freshly reinstalled. They weren’t able to retrieve any of my files for me so I knew I’d be busy getting everything put back.
And then the pain and frustration hit. My back up drive wasn’t working. Despite diligent use, the last backup information captured was in June of 2016. I lost 2 years worth of everything. Documents, photos, files, information – you name it, I lost it. I was absolutely devastated. Some stuff was totally irrelevant but some stuff was hard to swallow that it was gone. I have no idea why the drive didn’t work – it’s a simple external drive and I swap out my hard drive to the external drive once a month. It always appeared to be reading the documents fine but apparently, that wasn’t the case. I also didn’t have Apple’s built-in Time Machine turned on in the past, so I’ve made sure that’s on now. All in all, everything I can do to back up my computer is now in place, along with a monthly calendar reminder to back up to the external drive and to check it to make sure it works!!!
Folks, check your computers and make sure you’ve backed up your data!! Use my experience as a lesson and don’t let this happen to you.
I’m back up and running now but it’s definitely been a frustrating week. I hope you never have to go through this experience yourselves. I certainly have everything set up properly to prevent it from happening again. And on I blog.
There is always hope!
 

Guest Post – Mary Gutierrez

I am pleased to share a post by a Guest Blogger today by the name of Mary Gutierrez
Mary just published the following article and I thought it was important enough to feature here:

Mental Health Advocates Share How To Prevent Suicide in 60 Seconds

What would you say if you had 60 seconds to talk a stranger out of taking his or her life?

Image from Pixabay

I was flipping through my new SoulPancake book when this question jumped off the page.

What would you say if you had 60 seconds to talk a stranger out of taking his or her life?

I froze and my mind went blank. This can happen in my lifetime and I didn’t know what I would say.

So for this National Suicide Awareness Week, I’ve asked some mental health advocates to answer this question.

I hope you will never need the suggested responses and tips below. But if it happens, may they help you save a life.

Here’s What They Shared

  1. “The pain you are feeling must feel overwhelming but If you live another day I will show you that life can be better than what you are living.” — Saaim Ali
  2. “I can’t promise you it gets better. I won’t tell you sunny platitudes or promise you rainbows.
    What I will do is ask you stay, because you’ll never know what’s ahead if you don’t.
    I will do my best to help you look for the rainbows and walk in the rain with you until you can, because I’ve been there, too.” — 
    Selena Marie Wilson
  3. “What you’re considering doing is a permanent solution to a temporary problem. Whatever it is — I promise to help you to resolve it — but we can’t do that if you’re dead.” — Kathy Reagan Young
  4. “ I have been where you are. I know it feels like there is no other way out, but there is hope. People care, I care. Take my hand, I will walk with you through this. Your loved one will be lost without you. One step at a time, one minute at a time. We can do this together. You are not alone.” — Crystal Fretz
  5. “I’ve been there, and I just want you to know that even though it doesn’t seem like it right now, at this very moment, there is hope. You are loved. If you can’t think of a single person who loves you, know that God loves you. I love you because you are a beautiful creation of God. I’ll go with you to find help. I’ll stay with you until you feel safe. You are not alone.” (coupled with questions about the person and things they like/dislike, points we may have in common, and non-threatening body language — adopt the same gestures they use, sit and or stand in the same posture — mirror them so that they can feel the empathy and love). — Anita Ojeda
  6. “There’s a whole bright, beautiful world that needs your spirit in it. It feels dark, lonely, and hopeless right now, but it’s not. There’s help for you, there are people who care about you, and you are so, so much more valuable than you realize. Let’s talk about what resources are available and which one you think will work for you, and I’ll help you make the call if you want. You’re not alone. I’m here to help you. It will get better.” — Olivia Sod
  7. “Trust me I understand how you feel, I’ve been there myself. But hang in there. Sometimes it doesn’t make any sense, but just hang on. Hang on. Hang onto life.” — Sheryl
  8. “A lot of times, people who commit suicide believe the people in their lives would be better off without them, so I’d tell them they wouldn’t and I know. My brother committed suicide and it was the worst thing I have ever experienced. I’d tell them there would be way more people than they realized that would be impacted by this choice and there were more people that cared about them and wanted to help than they realized.” — Rosanne
  9. “As worthless and hopeless and terrible and dark as you feel, this isn’t the end of your story. You can have light and hope and worth and joy. Don’t make a permanent choice that will affect your family and friends long after you’re gone. They need you, whether you think they do or not. You need them, too. Cling to the life God’s given you, even if you have to hold on by your fingernails and it feels too hard. This isn’t the end of your story.” — Anna Huckabee
  10. “Keep them talking basically. When it came down to it and my friend threatened to jump off a multi-storey car park, I told him that if needed I was going to rugby tackle him and sit on him until the police arrived and could restrain him properly (they were already on the way anyway). Probably not the most official way to deal with it but while doing it, it kept him focused on me and talking to me rather than the other things that were going on. My friend has since been diagnosed with a version of Bipolar rather than depression. Unfortunately, it took a number of years to get past the diagnosis of depression or stress.” — Hannah
  11. “What can I do to help you? (And I would start to tell them about my mother and ex-boyfriend and how they took their own life and that it’s okay to ask for help.) Everyone needs some kind of help throughout life. Just let me try to help you.”  Chasa Fulkerson
  12. “The pain you feel right now? If you allow it to end your life, the same pain will attack your family and closest friends because they will miss you. After you are gone, the pain will be allowed to grow bigger and bigger! Let’s fight this together now and end the pain, but keep your life. You DON’T want to suffer through all this darkness for nothing, do you? Because on the other side of this darkness, this grief, this pain is something worth living for joy and hope. Let’s find some of that for you! I have a list of great resources!” — Chris Moss
  13. “Listen, I’ve been there too. Right where you are. 10 years ago. So much can change in the next year for you. Don’t convince yourself that there’s no hope. That’s a lie from the pit. You have a gift and worth and value, and the devil is trying to keep you from giving it to the world. God cares about you and loves you, and has plans for you for a purpose and good. It doesn’t matter what you’ve been through or done, there is hope for a happy and joyful life! Come with me. Please let me tell you my story.” — Abby Karbon
  14. “This may be hard to hear right now but you are worth so much, just by being the only you in the world. You will be making a decision that you can not take back while going through emotions that will very well pass, even if it takes a little work. You are not alone, even if you feel like it. There are millions of people who feel just like you. Talk to me. I’m here to listen. I’ll never shut you down. You can trust me. I know what it’s like to feel like the world would be better off without you. Don’t listen to those negative thoughts. You are worthy and you will get through this.” — Cortney Kaczmarek
  15. “You are needed. You are necessary. You are loved.” — Barbara Moore
  16. “That life will be good again soon and that it’s an illness causing all the pain. They can get better and they can enjoy life once more they just need some help.” — Hazel Jackson
  17. “Hey there, I know you don’t know me but I’m here and I care. Please just come, talk to me, let’s get a coffee and restart. You won’t be able to take this back. I get it but I also just want to know your story, I don’t want this to be an end to our conversation. All the things you are feeling must be overwhelming so let’s just calm down and breathe. We can talk when you’re ready.” — Emerson
  18. “Being on the other end of it, I was told ‘it’s not worth it. This will pass and I will stay by your side and be there always.’ And that person to this day is still always by my side making sure I’m okay. And this was a few years ago. — Hailey Giambelluca
  19. “You are loved. You are taking an easy way out, but what about the ones that love you? What about the ones that fight for/with you? We would be slowly dying inside if you were not here!” — Angel
  20. “I can’t tell you what to do but I see you and I care. You’ll leave a hole in the universe that no one else can fill. This world is more meaningful with you in it. Please sit with me and tell me where it hurts. I’m listening.” — Emma Frances
  21. “There is help out there. This solution you are considering is permanent. There is no coming back. You may feel you’ve tried everything, but there are specialists that can ease your suffering. There are many options available to you, and I will help you each step of the way. The symptom of suicidal ideation leads you to believe there’s no other hope. I can attest as someone who’s been in your shoes there is. And I’m glad I didn’t make that permanent choice. So please come with me and we can find help right now.” — Ben Barrett
  22. “Give me your hand. Come closer. *if okay I’d give them a hug* I truly do understand this feels like the only way — I’ve had the same thoughts and experienced it with a loved one. I’m not going to tell you the usual things …the things you know. Just, remember that there is hope. I’ll come with you. I’ll help however I can, even if it’s just to listen…I will not judge you for your experience is yours and must be heard. Give me your hand.” — Eleanor Catalina Stevens
  23. “Up close it’s hard to see a way out or the greater plan, but everything always works out in the end. So many people find times in their lives hard, but keep going and when you look back, you will see that it was all part of a greater plan.” — Laura P
  24. “Let’s get you help! Who knows, you can overcome your depression and help others who are struggling, one thing is certain we need people who understand us, come with me, we’ll get you help, we’ll keep trying until you find a therapist you are satisfied with.” (this is just a note that I will help him/her get the help they need even though I don’t know them and they don’t know me). — Jazz Williams
  25. “Things do get better. There are brighter days ahead but you have to stay here to see them. The world needs what you have.” — Wrae Sanders
  26. “It’s okay to not be okay. And it gets better. Just stay. Use your voice to breathe life into a conversation that must be had. You are worth more than making a permanent decision based on a temporary emotion or thought. You are loved, and you can rise up once again.” — Maria Thomas
  27. “You matter. You have people who care for you and will miss you. Your death will not relieve anyone else of a burden or make someone else’s life easier. Hold my hand. I am here for you and the journey ahead. It will get better.” — Teresa Colón
  28. “Choosing to live, even though you are in deep pain, is courageous. That choice will help you take a step out of the darkness and into the light. That choice will prove to the world that you are stronger than your pain. That choice will prove to your pain that you are ready to fight back. That choice will begin your path to the help and support you need. I am here, talking to you, which proves to you that I care. I want to help you. And I will lead you to another person who will help you. And that person will lead you to another person who will help you. And another. And another. That path of people will be there for you as long as you need them. That path of people who care about you will lead you to safety, kindness, strength, and love. Take my hand right now, and let me help you start that path toward love.” — Kate Johnston
  29. “Life is full of challenges, but that’s what teaches us to appreciate the good stuff. Today might be a challenge, but we’ll figure out a way to make tomorrow better. You matter in this world, and you are loved.” — Christalle Bodiford
  30. “Think of those who love you and how it will destroy them to see you go my friend come with me to a better life.” — Robin Tomlin
  31. “I would say that this is a very permanent decision for a temporary problem and ask them to talk to me, no matter how long it takes until they realize that someone cares. I would also tell them that there is always hope, that things can get better and that I will support them in getting the help they need to find their happy again.” — Pamela Jessen
  32. “The Universe Thought You Were A Good Idea! So Hold On Tight And Stay, The Sun Is Coming For You! You Are Loved And You Are Needed In This World!” — Kristal @ The Fibromyalgia Pain Chronicles
  33. “I know you think this is the only way to make the pain end. I don’t think you want to die. I think you’re just tired of living I’ve been there. I UNDERSTAND. I think you want to end the pain and suffering. I understand. But, don’t make a lifetime decision on today’s emotions. Emotions are fleeting. You might feel worthless. I bet you think you’re a burden or nobody will notice you’re gone. I would. I noticed one of my best friends every day is gone. I will be here for you. Keep talking to me. I will talk to you as long as you need to talk. I will be here for as long if you need me to be. We will get you through this together. The world needs your story to continue. You are destined for greatness.” — Jamie
  34. “I would answer that ‘Hi this is Roger’ and if they said ‘I want to kill myself’ I would ask why and let them answer — then depending on what they said and how they said it — I would either ask them a few more questions or engage in a conversation letting them know that I was there and would listen and that I wanted to help — then let God be the Guiding Force while letting them know that I cared and they were precious and worthwhile.” — Roger Potter

Your Turn

How about you? What would you say if you had 60 seconds to talk a stranger out of taking his or her life? Let us know in the comments below.


If you liked this post, you might also like the Spoonie Secrets series. It’s a safe space for people with chronic illness where they can share their deepest and darkest secrets anonymously. Check out the first issue here.

https://medium.com/@mary_gutierrez/mental-health-advocates-share-how-to-prevent-suicide-in-60-seconds-94ac2f0c97ce
What a powerful post, Mary!!! Thank you for allowing me to share it on my blog. As I always say:
There Is Always Hope.

Product Review – 31 Days of Expressive Writing for Chronic Illness and Pain

I recently had the opportunity to take part in a course called 31 Days of Expressive Writing for Chronic Illness and Pain by Esther Smith at who runs the Life In Slow Motion blog. This course normally retails for $39.00, but was provided to me for free in exchange for my review which follows below.
I loved it!
The course is designed with several chapters, each one giving you the opportunity to journal about various aspects regarding pain. It starts out with Your Story and asks the first question:

What are the biggest challenges you have faced over the past months and years of living with chronic illness/pain?

You are given time to journal the answer and then asked a series of further questions to help you dig deeper into the answers you’ve provided. Other chapters include:

  • Grief – you are asked to journal about the 5 stages of grief
  • Faith – How has your faith changed over the years?
  • Relationships – You have several journal options to choose from here
  • Strength, Joy & Hope – a running log of 4 different categories over a week

Finally, you set your Goals for the future by journalling through the various prompts that are provided and then setting SMART Goals for the future.
This course can be done quickly, but I highly recommend you take the time to move at a slower and more thoughtful pace. This is an opportunity to really dig deep into the soul to find answers buried deep. This is your personal journal that you are welcome to share, or to be kept private, so be your authentic self when you write and don’t hold back.
For me, this course really helped clarify how I look at my chronic pain and the words I’ve used to describe it in the past. The course was a challenge at times, but a good one in that the prompts make you go deep. Because the writing is just for you, there is a basic honesty that is drawn out knowing that no one else is going to read it unless you choose to share it. You can’t lie to yourself so you might as well put that raw truth down on paper. It provides a sense of ownership when you see the words in front of you.
The course was well laid out, easy to understand and while it does draw some content from Scripture, I think it would appeal to both a secular audience as well as a Christian audience.
I highly recommend this course for anyone who lives with chronic pain and is trying to find a way to express themselves and what they are feeling in a more clear and concise manner. By finding my voice, I felt like I was better able to manage my pain, so Esther, thank you so much for helping me find the words I was looking for.
If you are interested in taking this course, I have recently become an Affiliate and will earn a small commission if you purchase the course through this link.
The price, as mentioned at the beginning of the post is $39.00. There are other courses available through this site, including What Really Helps People With Chronic Pain for only $99.00, and Pacing For Chronic Pain, priced at just $69.00. To sign up for these courses, please make sure you use my Referral Number 19f3aa
I am delighted to endorse these three courses for anyone living with Chronic Pain. The information has been thoroughly researched and collated by Esther Smith, who has an MA in Professional Counseling and a certificate in Biblical Counseling through the Christian Counseling and Educational Foundation. She is licensed as a clinical counselor in the state of Maryland, and provides a variety  of resources for people impacted by chronic pain.
Reviewed with honesty and full disclosure on September 4th, 2018.
Pamela Jessen
There Is Always Hope
cc: Esther Smith, Life in Slow Motion
 

How Are You Doing?

Hi, how are you? 
How are you doing?
How are you feeling these days?
Oh boy…do you ever get those loaded questions? I do and as much as I appreciate that people care and want to know how I am, I also wonder if these are “polite” questions, or do these people genuinely want to know how I am. It’s so hard to know how to answer. So, generally, I respond with, “I’m doing okay thanks”. 
But what if I told the truth? 
The truth is, I’m struggling right now. I’m struggling physically with pain and exhaustion and I’m struggling with my blogging and I’m struggling with feeling lonely and housebound, but I’m pretty sure no one really wants to hear about all that when they ask me how I’m doing so I don’t tell them. 
But I’m going to tell you.
I’m averaging about 2-3 hours of sleep a night right now. I manage about 45-60 minutes at a time and then I wake up. I feel like I’ve slept for hours, but I look at the clock and barely any time has passed at all. I’ve always struggled with insomnia and I’m going to be trying some new meditation music, but it’s frustrating to not be able to get decent rest. It doesn’t allow my body to heal, which contributes to my overall pain. As I type this, I can feel my hands and legs and feet throbbing with pain. It’s almost like a drumbeat – thump THUMP thump thump, thump THUMP thump thump, thump THUMP thump thump, over and over again. My legs muscles feel tight and almost crampy and my fingers and toes feel swollen. My back is tight and tense and I can also feel the tension in my jaw and neck. My vision is blurry and I can feel the spot just under my cheekbone where my Trigeminal Neuralgia flares up – it’s gently pulsing, almost like it’s teasing me.
Now, I don’t tell you this to ask for sympathy. It’s just stating the facts. The same as I’m struggling right now to come up with various subject matter to blog about. With two blogs on the go now, I’m working at how to monetize one of them, and keep this one for posting on. I’m taking some courses about how to make money blogging and I’ve signed up to review a couple of courses as well. In the midst of that, I’m also taking a general writing course, plus I’ve applied for a new volunteer position – another committee that I’d like to be a part of. I’ll be back to work on one of my current committee assignments soon, which I’ll write about, but it still leaves me struggling with core subjects to blog about. It’s not for a lack of writing prompts, that’s for sure. Generally, what happens is I get an idea in the wee hours of the morning and then I write like crazy and bang out a post in about 30 minutes. It happens when I write poetry too. It just comes to me, I don’t plan it. When I wrote Wistful Thinking, I literally had the idea and the concept and completed poem done in 10 minutes. 
The other issue is that I’m housebound for the most part. It’s because I don’t do enough to get out and about, because of pain and exhaustion (and because I’m busy blogging). Well, no more excuses for that. I just bought a new walker/rollator to get me out moving again. She’s a pretty silver/blue Xpresso and I’ve named her Bluebird:

Isn’t she lovely!!  So much nicer than my old one, as there are no exposed cables, the basket is deeper, the seat is thicker and so is the backrest, and the wheels are designed to go over gravel and other rough surfaces. The handle area is large and smooth and she rolls beautifully, plus it’s still a one-handed close…I just pull up on the handle in the middle of the seat and voila! she folds sideways, so easy to transport when needed on the bus!!  Hopefully, this will be the incentive to get me out and about more often…there is a gorgeous lake just 15 minutes from my house with a perfect walking path around it and I’m making it my goal to get down there at least once a week.
I also plan on getting back in the pool, and Bluebird will be great for walking to the bus and back. I’ll be speaking with my new doctor in the next week about taking an Aqua Therapy course at our local Pool and Fitness Centre. It’s a specialized one-on-one program for People with Chronic Pain, working with a registered Kinesiologist to help with rehabilitation in the pool, so it’s easy on the joints and muscles. By getting my doctor’s approval, there’s a good chance I can have the costs paid by my Long Term Disability provider. I’m excited about it and even though I have to take a bus to get there, it’s only a 20-minute ride. I’m sure there’s parking available for Bluebird as I’m not the only one who takes these types of classes.
I’ve also been trying to be more physical at home, and not just sitting in my recliner all day (although it is rather molded to my butt shape). I’ve been doing wall push-ups and bicep curls and was trying to do squats as well, but those became too painful for my knees and ankles. I’m going to start doing planks to see if those work and maybe some gentle lunges with no bouncing. Everything hurts my joints so much, but I need to become more flexible. I think my Achilles Tendon is ultimately going to need surgery as it’s responded to nothing else we’ve tried – no physio, no stretching, no taping. I’m not sure what else is left, but I see Dr Winston soon, my Physiatrist and we’ll talk about options. It’s slowing me down and affecting how I walk and causing my left hip to have even more pain than necessary, which is going to increase the time before needing a hip replacement on that side as well. I’ve also developed some painful Neuropathy in the left foot, on the top and into the big toe, that might be related to my Type 2 Diabetes, so more to talk to my new doctor about. This just came on in the last few days, while on the motorcycle trip. 
Mentally, I’m worried because I think I’m going to have to come off the drug I take for my Bipolar Disorder and it’s the med that has given me all the energy I’ve had lately, Abilify. It’s causing me some major side effects; brain zaps, tongue trembling, handshaking, vision blurring and an uncomfortable amount of weight gain. I’m only 5’2″ tall, so any weight gain over 145lbs is too much and I’m up to 160lbs. It’s the brain zaps that are the worst though…I can actually feel them…they’re like an electric shock in the brain, but in high speed, and you can both feel them and hear them – a lightning bolt that goes right through the head from one side to the other. If I had to describe them based on something we physically have, I’d say it’s like one of those electronic fly killers that buzzes when it kills a fly…same sound, that bzz-zap!
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Annoying!!!
There are good things happening in my life though. Ever since we bought our new motorcycle, I’ve been able to get out for more and longer rides with my husband Ray, which is a real treat for me. Our new bike is a 2007 Yamaha Venture and more of a cruiser than the sports bike we had before, a Kawasaki Concours.
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The Venture is super comfortable for me and I’ve been able to go for longer rides each time we’ve been out, including a very recent Grand Adventure! Ray and I took the bike and went to Mt. Vernon, Washington to visit an online friend of mine named Maura so I could hang out with her and binge watch the second season of This Is Us, a tv show that I started watching on Netflix, but is no longer being carried there. Maura is a huge fan as well, so I spent 2 days with her watching the show while Ray went off exploring on the bike, then we hung out with her and her hubby Paul for dinner the first night (and with their daughter Anna – their son Matthew was out), and on the second night, we took them out for dinner at a local pub. On Saturday morning, Ray and I left at 5am to head for home, taking the I-5 freeway to the Blaine border crossing and then the Tsawwassen ferry home to get back to our cat Dorie at just after 9am.
Altogether, I’d say I spent 2 hours in the saddle but every second was great!! I know I can go for longer now and be comfortable. I can get on and off the bike easily, and it just feels good to ride. As an added bonus, I have a new leather jacket and gloves! Ray bought them for me on Saturday, August 25th here at a leather shop close to home. I really wanted pink, but decided this black jacket was too sexy to pass up! It has just enough detail on it to make it look sharp without being tacky. The leather is buttery soft with black stitching up the sides on the back, and on the back of the arms from the wrists to the elbows. Ray will have to put a new snap in at the wrists to make them tighter (I have short arms and tiny wrists) but it fits beautifully everywhere else and I’m delighted to have it. I also bought proper bike gloves – I got gauntlets, the kind that goes over the jacket sleeves to protect me from bees flying into my sleeves, etc. 

Here are a few pictures. I’ve also included a picture of yours truly with my hubby Ray, as we were coming home from our trip. It was taken on the ferry from Tsawwassen, BC to Victoria.
I’m still keeping busy with my volunteer work and have applied to sit on a new committee for Island Health’s Laboratory Services Quality Council. I access Lab Services every three months for blood work, so thought it might be fitting to be a part of their quality control council. I’m also waiting to hear back on a couple of other opportunities I had my name in for so it could be an exciting fall!
So there you have it…a bit more about me and what’s been going on in my life and how I’ve been truthfully feeling.  The next time someone asks you “how are you doing”, how will you answer them? With a short predictable answer? Or will you tell the truth? 
There is always hope
 

Getting To Know Me

Getting to know all about me!!!
It occurred to me that I’ve written a lot about my illnesses, etc. but I haven’t told you a lot about me, the person, so I thought I’d change that today. One of my favourite bloggers sent out a post with some questions on it that was a great start, so here we go:
What is your favourite summer holiday destination?
Hubby and I tend to stick around the home during the summer, but because we have a new motorcycle, we are exploring a lot more on the bike! I can’t go super far because I tire out fairly quickly but we’ve gone as far as Mill Bay and round-trip home on the Mill Bay/Brentwood Bay ferry, and then on other trips, out to Sooke and Metchosin. We just took a road trip from August 22-25th, going to Mt. Vernon, WA to meet an online friend in person for the first time! Maura and I binge-watched the second season of This Is Us since I can’t get it in Canada, and Ray explored the roads on the bike and then we all got together for dinner in the evening with Maura’s husband Paul joining us. We had a great time! On Friday, the 24th, Maura and I met up with another online friend of mine whom I’ve met before and had lunch. It was nice to introduce Megan and Maura and I think that will be another friendship that will blossom. Ray and I returned home on Saturday and I’m sure the cat missed us – she wouldn’t leave our laps for the rest of the day!

A favourite childhood memory of summer?
Every summer my family would go to Powell River, BC and spend at least 2 weeks at my Aunt & Uncle’s cabin on Powell Lake. No electricity, no washroom (just the outhouse) but more fun than I can possibly remember. Swimming, boating, water-skiing, skinny-dipping, hanging out with my best summer friend Tina…those were always the best 2 weeks of my life.
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Which do you prefer ice cream or frozen yogurt?
Absolutely ice cream!!!! I love plain vanilla because I can dress it up in so many ways – with peaches or berries, or chocolate fudge and marshmallows, and I especially love it with chocolate pudding on top!
What is your go-to dinner on a hot summer evening? Feel free to share the recipe!!
Easy Ranch potato salad. Boil potatoes, let cool. Cut into cubes, add chopped celery, cooked bacon bits and ranch dressing. Mix well, add chopped green onion and chill until serving.
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What is your favourite BBQ food!
Pork chops, potato and corn on the cob, all cooked in a foil pack.
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Ingredients

  • ½ cup barbecue sauce
  • ¼ cup honey
  • 2 teaspoons ground cumin
  • 4 pork boneless rib or loin chops, 3/4 to 1 inch thick (1 1/4 pounds)
  • 2 large ears corn, each cut into 6 pieces
  • 1 cup baby-cut carrots, cut lengthwise in half
  • 2 cups (from a 1-pound 4-ounce bag) refrigerated cooked new potato wedges
  • 1 teaspoon salt

Steps
Heat coals or gas grill for direct heat. Spray half of one side of four 18×12-inch sheets of heavy-duty aluminium foil with cooking spray.
Mix barbecue sauce, honey and cumin in small bowl. Place 1 pork chop, 3 pieces corn, 1/4 cup carrots and 1/2 cup potato wedges on centre of each sprayed foil sheet; sprinkle with 1/4 teaspoon salt. Spoon 3 tablespoons sauce mixture over pork and vegetables on each sheet.
Fold foil over pork and vegetables so edges meet. Seal edges, making tight 1/2-inch fold; fold again. Allow space on sides for circulation and expansion.
Grill packets 4 to 6 inches from medium heat 15 to 20 minutes, turning once, until pork is slightly pink in centre. Place packets on plates. Cut large X across top of each packet; fold back foil.
A song or songs that take you back to an amazing summer.
Mine are all movie soundtracks, so I’ll go with the Star Wars soundtrack. Any summer with Star Wars is a good summer.
How do you beat the heat in the summer?
I’m usually indoors with my fan blowing and a nice cold drink of flavoured water.
Do you prefer swimming in the ocean or a pool?
I live within walking distance of a wonderful lake with a great beach, so I’ll say the lake first, then the ocean. I only like the pool for doing Aquafit. I’m not far from the ocean so prefer to do my walking there, on the beach with the water lapping at my toes.
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What is your preferred summer vacation? Travel with family? Solo? Or Friends?
If I was travelling, it would be with Hubby only. We’ve done a couple of cruises and would like to do an Alaskan cruise next. I would love to do a World cruise if money were no object!

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So, flip-flops or bare feet? 
Neither! I can’t wear flip-flops and my feet are too sensitive to go barefoot so sandals it is!
Sundresses or Shorts? 
I’m totally a sundress girl! I wear dresses all year long, even in winter. I prefer them over pants any time of the year.
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Fun Summertime Activity? 
As per the above photo, I love to go visit the goats at the Beacon Hill Children’s Farm in Victoria. There are always baby goats there and as you can see, all the goats love to rub their heads on my bright pink crutches and scratch where their horns used to be!!

Wistful Thinking

I’m taking part in another Blog challenge. This one is a #BlogBattle and involves the use of the word Moon:
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The moon makes me wistful, it’s so far away yet it’s filled with the dreams and the hopes of the men
and the women who knew that one day, they would walk on it’s surface, they just didn’t know when
And all those years ago now from when it first happened, we haven’t been back and I worry about why
Does the moon feel left out? Does it ever feel lonely? I wonder if Moons even know how to cry?
It probably thought we were first of the many who would come to pay homage and visit and stay
But after the hoopla and the sciencing was over, we all said goodbye and we rocketed away
Now the Moon overlooks us, and I overlook it and I’m wistfully thinking I’d like to go there
What a joy it would be just to soar in the sky and perhaps see my home as I fly through the air
Imagine my new home where my body could be free of the earthly restrictions I currently feel
My pain would be less as I soar spaceless and free, now that sounds to me like one heck of a deal!
Alas, I don’t think that dream is likely to come true, but I can sure be inspired when I look at the Moon
And one never knows as our science evolves, perhaps someday I might get there, sooner than soon.  🙂
there is always hope
~ Pamela ~