When you live with Chronic Pain and Chronic Fatigue, travelling for business and/or pleasure can become a real challenge. In the course of my volunteer work, I sit on 4 different committees and one working group, and of those, 2 of them require travel from my home in Langford, BC (just outside of Victoria) to Vancouver on the Mainland. It’s a short flight, only 30 minutes from runway to runway, but with everything that goes into it, it can end up being quite exhausting by the time the trip is over.
On my most recent trip to Vancouver, I came down with what was either food poisoning or a severe case of gastroenteritis on Thursday evening before my all day Friday meeting. I was in the bathroom every hour all night long, plus I had the stomach cramps and nausea, along with feeling extremely cold yet having the sweats. I haven’t been that sick in years!!! On top of all that, I had a flare-up of my Trigeminal Neuralgia which combined to make me a very, VERY miserable girl.
I survived to the next day, made it through the meeting still having the shakes and sweating and still with facial pain from the TN, and all I wanted to do was get home as soon as possible. I arrived at the airport for my 7pm flight, only to find out it had been cancelled!! The next flight was for 8pm so I had no choice but to wait. Then there came notice of a delay for that flight. Then another delay and another delay and still ANOTHER delay. In total, there were five delays for the flight and I didn’t get home until just before 11pm by the time it was all said and done.
I was so wiped out from being sick, from the travel, the intensity of the meeting…just everything. I went to bed immediately and didn’t wake up (except for pee breaks) until Sunday at 8am. I completely slept through Saturday!!
Travel, in general, is not easy when you have Chronic Pain and being sick makes it worse. If you do have to travel, for business or pleasure, I’ve gathered a few tips to help make YOUR travels a bit easier the next time you’re flying or on the road:
Keep a small, lightweight, hands-free bag with essentials handy and check your main bag if traveling by air.
Ask, “How accessible are handicapped accommodations?”
Pack for all temperatures and environmental fluctuations. I get hot easily, so I pack clothing that is easy to layer. With careful coordination, I can make many outfits from fewer articles of clothing and lessen the load.
Make your bed as close to your bed at home as possible. Ask for extra pillows or blankets. (I always check the closet when I first arrive for these).
Stay as close to your usual routine as possible, but also adjust with the local time to avoid jetlag.
Throw in an extra pair of reading and sunglasses from the dollar store so if you lose them, you don’t mind so much. A book light comes in handy and serves as a light that is easy to access when your unfamiliar hotel room is dark.
Carry a medical letter or a medical history summary that includes diagnoses with your physician’s contact information. This letter is handy and often available from your doctor. Ask if they might have such a thing or create your own.
If you are confined to an airplane seat, keep blood and lymph moving by flexing and relaxing your joints every 20 to 30 minutes. Compression socks are helpful for circulation too.
Avoid alcohol and stay hydrated. Dehydration stresses the body as a whole.
Carry a healthy snack bag with fresh fruit and non-perishable foods, like protein bars, in case of a delay.
Dress for comfort in loose non-restrictive clothing and a pair of comfortable fail-safe shoes. This is not the time to try out those new sandals you bought!!
Make sure your plane, train, or bus is on time before leaving home – sign up for notification alerts when offered.
Travel comes with challenges for everyone, but especially those of us who live with conditions that cause chronic pain. But, if we respect our limitations and listen to what our body tells us, we can enjoy our time away from home.
It’s time to meet our next guest, the wonderful Sharon Sayler. I’ve had the pleasure of being a guest on Sharon’s show and she’s delightful. Let’s hear more:
Introduce yourself and tell us a bit about you…
First, thank you, Pamela, for creating an excellent platform for which we have this opportunity to share. I enjoy our mutual understanding that through thoughtful sharing of experiences others in our community know that they are not alone. That feeling of ‘am I the only one?’ can be isolating. Building community and awareness of ways to thrive and optimize our health journey are critical.
I’m Sharon Sayler, MBA, PCC and the founder of Competitive Edge Communications. I’m affectionately called the ‘Difficult People Whisperer’ by my clients. As a speaker and trainer, I teach professionals how to enhance their verbal and nonverbal communication skills to achieve their goals. According to GlobalGurus.org, I’m one of the top five experts in body language in the world.
I am also an international best-selling author of several books. A perennial favorite is ‘What Your Body Says and How to Master the Message: Inspire, Influence, Build Trust and Create Lasting Business Relationships’ (Wiley.) Iam also proud to share. I’ve also authored a best-selling children’s book ‘Pinky Chenille and the Rainbow Hunters’ with a second book in the Pinky Chenille series out soon.
Several years ago, life and work took an unexpected turn to become what my friends now call a “compelling-passion.” With my COURAGE communications techniques combined with my own experience dealing with a rare medical condition, I have been teaching others to become courageous self-advocates. Self-advocacy communication techniques can turn life transitions into transformations.
One of the ways I share the messages of ‘thriving regardless of your diagnosis’ and medical self-empowerment is through The Autoimmune Hour, now #1 show on OMTimes Radio along with the @UnderstandingAutoimmune YouTube channel, and the show’s website UnderstandingAutoimmune.com.
Chronic illness(es)/disabilities I have…
I dislike the word ‘have’ as I prefer my unconscious mind not to take ownership, yet for ease of understanding, the label my experience has is autoimmune more specifically Dermatomyositis.
Dermatomyositis is a rare inflammatory (autoimmune) disease defined by muscle weakness and a distinctive skin rash. The painful, peeling rash had covered 60% of my body by the time I recovered from the initial ‘flare.’
My symptoms/condition began…
Suddenly and not so suddenly.One morning I woke up after a late night cross-country flight and my legs felt incredibly weak. I had to use my arms to move my legs to stand. Although frightened, this seemed to work itself out over the next few hours. I chalked it up as ‘weird’ and kept working. Feeling tired and achy for the next two weeks, I suddenly broke out in hives that soon covered a large percentage of my body.
I realize now I’d had a variety of symptoms long before this episode that fit a wide range of conditions, and it wasn’t until the distinctive skin rash that a definitive diagnosis was made.
My diagnosis process was…
Bizarre to say the least. I had been seeing a specialist for about a year with her proclaiming a variety of diagnoses that didn’t seem to fit….
The day I walked in with the ‘now peeling distinctive skin rash’ she immediately excused herself and came back 10-minutes later with another doctor who without introduction, pulled out a magnifying glass and looked at various parts of the rash, looked at the first doctor, nodded ‘yes,’ and left the room. The first doctor that I had known for a few years dropped her head and slowly apologized to me for having dermatomyositis.
She could have said supercalifragilisticexpialidocious as the word ‘dermatomyositis’ meant nothing to me. The sad-news-body-language told me, ‘it’s not good.’ After that, the words blended together as I struggled internally to understand what she was saying – it was like my ears had stopped hearing and my brain had ‘frozen.’
We parted ways with an understanding I had to see a rheumatologist. Upon reaching the elevator, I immediately ‘googled’ the word, at which time the shock and grief hit hard.
The hardest part of living with my illness/disabilities is…
Losing perspective. Now, that I’ve been through multiple phases of recovery, I realize the worst part is losing perspective on ‘when is an itch, just an itch.’The slightest change, the smallest strange pain, anything odd or different begins the mental gymnastics of Do I need to worry about this? What does this mean? Is this so important that I must seek medical attention immediately, can it wait until tomorrow, or what if I just let it run-its-course will I be okay?And of course, dealing with all the new found food and chemical sensitivities as the body defenses seem to be stuck in hyperdrive make social occasions awkward.
A typical day for me involves…
Everything I used to do that I still want to do. The changes I see are I’m more consistent in choosing to set boundaries, say ‘no’ when I want to, remove myself from others drama and be conscious of my decisions and actions around what I should be doing for overall good health such as quality food, stress reduction, sleep, and exercise.
The one thing I cannot live without is…
Spending time creating joy, especially with my beautiful family and friends. Life is too short — spend it giving and receiving love. (And the irresistible passion I have for doing The Autoimmune Hour podcast and video show.)
Being ill/disabled has taught me…
I don’t consider myself ill or disabled, yet I’ve learned to be more patient and understanding. It’s crystal clear now, the old saying ‘that one can never really know what someone else is going through unless you’ve been there too.” My mantra these days is ‘Come from love. Always.’
What advice would I give someone recently diagnosed…
First, if you can, take time to absorb and sit with the ‘bad news.’ If it’s not immediately life-threatening, don’t make any major life decisions right away.
I remember I was told by a ‘top-notch’ doctor to have a surgery that in my mind would have made my life much worse in the long run, and with no real assurance that it would solve the immediate problem… I felt like they were treating me as if they were working on a car like ‘let’s remove the spark plugs and see if that works better….” Upon finding out that it wasn’t immediately necessary, I thanked them and sought a second opinion.
That second opinion changed my worldview; the second doctor said, “That’s a surgeon’s answer to a problem they cannot solve.” Wise words that I use everywhere now as in each person/expert/etc. has a specific point of view and the more narrow their expertise, the more narrow their recommendations will probably be.
Always run options through the filter of “What are other ways I can view and solve ‘this?’ Remember, it’s okay to ‘fire’ someone. If someone is upset that I seek a second opinion. I say “Thank you for your time and no thank you.” I like to joke that there are as many varied opinions as there are experts.
Second, be careful how you talk about what you are going through. Our words create our reality. Words such as ‘poor me’ and ‘why me? can create our identity. Consider the word ‘have’ and how it denotes ‘ownership’ Do I want to own my diagnosis? No. I prefer to look at the word ‘have’ from the viewpoint that I can ‘have’ cockroaches, but that doesn’t mean I own them and that I can and will eradicate them. When said enough times your words become truth in your mind, and in the minds others too.
I prefer ‘I am having an autoimmune experience or journey.’ A diagnosis is just a label to chart a possible course based on symptoms and the prognosis is based on statistics — work hard to be on the positive side of the stats. Challenge yours and others’ conclusions on what your future will be. On The Autoimmune Hour, we have numerous stories of people thriving regardless of their diagnosis including Pamela who recently shared her Thriver story: www.UnderstandingAutoimmune.com/Jessen/.
My support system is…
My amazing family and friends as well as a team of medical professionals that are in alignment with, or at least, honor my view of ‘my body, my decision.’And the UnderstandingAutoimmune’s Courage Club Community that is growing every day through the podcast and website.
If I had one-day symptom/disability-free, I would…
Hmmm, I don’t know. I’m finding ways to live fully and thrive regardless of my diagnosis. Maybe eat a whole loaf of fresh baked crusty bread slathered in homemade butter and raw honey at a quaint Parisian cafe!
One positive of having a chronic illness/disability is…
A deeper appreciation of the quality and value of all life.
My social media links are:
The show can be heard on a major podcast outlets such as OMTimes Radio, Spreaker, iTunes, YouTube and iHeart Radio.
Having a chronic illness like Fibromyalgia can be a very isolating experience. Many of us used to work and found a lot of our social life revolved around our jobs, whether it was getting together with the gang after work for drinks or volunteering with a workgroup for a community project. Often, a best friend was made at our jobs whom we would hang out with more frequently, and those sorts of friendships became treasured relationships to us.
After you become chronically ill though, you often have to give up working, and those relationships no longer exist, not even with the “best friend” that you made. How do you handle the loneliness that comes from that? We tend to not go out a lot in the first place, because of pain and fatigue, so without a reason to get together with former co-workers, there’s now more reason to isolate ourselves than ever. It’s depressing to know that you’re no longer “part of the gang” and that you don’t fit in anymore. It’s even more depressing to know that your former friends don’t even realize that they’ve shut you out. It’s just the natural progression of you no longer being at the job, and nothing personal.
But what happens when you try to reach out, to make plans, and people don’t return calls? Or when people reach out to you, but you’re unable to go, because their plans are too ambitious for you? I’d love to see people for coffee, but they always want to combine it with shopping followed by dinner and drinks afterwards, and that’s too much of a day for me. Lunch and shopping, I can do that on a good day, but then I want to go home. And if it’s a bad day, then I have to say no right from the start. And what happens if I start having too many bad days when friends want to get together? They stop calling, period. I am “too sick all the time” and no longer any fun to be with. It’s easy to get depressed when this happens.
It’s so frustrating when friends give up on you. I can’t control my good and bad days. I have no idea when a good day is going to go bad. I can feel great in the morning and then start to go downhill by the early afternoon. I try to explain that to people, but they don’t always understand how unpredictable Fibromyalgia can be. Sometimes it can change from hour to hour and even minute by minute. It’s like going outside in changing weather and never being sure of how many layers you should wear. Will you be too hot, too cold or just right? And what do you do with all those layers if you don’t need them?
There’s also the other side of the coin though. What if your friends continue to invite you out, but you keep turning them down? Your reasons seem valid; you’re in pain, it’s too much of a hassle, the weather is too difficult, you’re tired, or you just don’t feel like it. It’s easy to make excuses, but you also need to search the real reasons for saying no. Are the reasons you’re giving valid? Or are you turning down invitations because of depression?
Signs to Watch Out For
How do you know if you’re becoming depressed or socially isolated? Here are some signs to watch for:
Being less motivated to leave your home
Feeling more anxious or worried when leaving the house
Declining invitations from friends or family to meet or attend gatherings
Planning fewer social opportunities for yourself
Ignoring supports when they reach out to you
Seeing only negatives associated with social connections
If you recognize any of these symptoms, please see a doctor in order to be treated appropriately. If you want to be more socially active, but find your friends are not as available as they’ve been in the past, the following suggestions might be helpful for you:
Volunteer with like-minded people
Help out in an animal shelter
Take up a new hobby
Join a support group (in person or online)
Join a Social Group in your City (look on Craigslist)
Keep a journal – it can help put things in perspective
Loneliness can be hard to deal with, but with the right understanding and support, you can overcome it. Make sure you’re staying in touch with people and not isolating yourself, and reach out to others if your friends have stopped reaching out to you. It’s okay to move forward and make new friends. Listen to your body and do what’s right for you. If you’re feeling up to it, go out and make new friendships through volunteer work or so social groups. If you need to take a break from socializing, that’s fine. Just don’t fade into the woodwork. Remember, your presence is valued no matter how much of it you are able to give at any time. You are loved. And as I always say…
Now a lot of you are probably thinking I’m crazy, and I am. While you’re getting up early in the morning to face the rush hour commute to go to a job you may not even enjoy, I could still be snuggled in my bed, fast asleep without a care in the world, right? Well, that’s the scenario you probably have in your head, but it’s far from the truth. As a Person with Chronic Pain (PwCP), I’ve probably been awake half the night because pain wouldn’t let me sleep; every muscle feels like concrete and every joint feels like someone has twisted it, put it into a machining vise and then clamped it three times tighter than necessary.
My brain hurts too…I want to be going to work with you. I loved my job prior to going on Long Term Disability (LTD) and the jobs I held before that. I was an Administrative Specialist at several different companies, mostly supporting Retail Operations and the people who managed the work; Directors, District Managers and Store Managers. In the past, I’ve worked for Rogers and Bell and my last company was The Forzani Group, now known as FGL Sports. I supported the group that ran the former Sport Mart stores (now closed), but am still considered an employee of FGL Sports while on LTD. I receive an employee discount and recently celebrated 10 years with the company.
I worked with an amazing group of people. I loved going into my job every day, knowing it was going to be challenging and fun and never knowing exactly what the day might bring. I organized team training events for Store Managers, travel and training for the District Managers, travel for the Regional Manager Rob Hillier and kept the Director, John Hould on track for his daily activities.
Then came the days when work started to become difficult. Too difficult. I had been doing all of this under the radar of Invisible Illness, which none of them knew about but it was starting to become an issue. Things that used to come easily to me became a struggle. I was famous for remembering things without needing a list and suddenly I was carrying notebooks with me because the Brain Fog was so bad. I would stop conversations in the middle of speaking because I forgot what I was saying. My pain levels were getting higher and higher but I refused to use a cane at work for my bad hip to ease the pain as I didn’t want to be perceived as being weak or incapable of being effective (this was prior to my right hip replacement). I couldn’t concentrate during meetings and even typing became a challenge – it still is to this day.
Once all the Sport Mart stores were closed, there wasn’t really a job for me any longer, so the HR department encouraged me to go on Short Term Disability while I figured out my health issues. Short term became Long Term, and I never went back. My last day of work was in October of 2009. I started with the company in February of 2008. That’s right…I’ve been on Disability with FGL Sports for over four times longer than I worked for them. It was distressing for me to have to leave, because I loved the work and I was very good at what I did. My identity was wrapped up in my work and had been since I first started my career in 1991. When I found myself at home on leave, I didn’t know what to do with myself. I slept a lot in the beginning which was healing, but after that, I didn’t know what to do. I felt invisible, as I’ve discussed on this blog before. And being invisible can be a very painful thing. People accused me of not wanting to work, that this was an extended vacation for me, and that was really hurtful. If they could see inside me, they would know how very much I wanted to be back at my desk, with meaningful work to do. The mistake I made is that I didn’t go around complaining about my health at work, so no one knew how badly I was hurting except for a couple of select people in HR, plus my bosses John and Rob.
I’ve asked my friend Tori Martin if I could share a quote here that she recently posted on Facebook and she graciously gave me her permission. This is what she said:
“STOP suggesting that people with disabilities of ANY kind just aren’t trying hard enough.
There are VERY few people who don’t want to work and contribute in a meaningful way according to society standards. Additionally, being able to work is NOT the ultimate measure of a person’s worth. Frankly, I am much more impressed at how a person treats others than what kind of work they do.I myself am unable to work due to physical limitations and it drives me crazy sometimes. Guess what though, I still have an incredible amount to give! I contribute to society through my photography, through having a huge heart that shows so much love and concern of others, through helping others, through occasional teaching of archery which helps many find confidence and enjoyment in physical activity. I contribute by paying taxes, voting, getting involved in local groups and causes and supporting local businesses. I am NOT a waste of space. And not that it’s anyone’s business, but I worked from the age of 10 until I was 39 and was literally bed-ridden for 2 years. My dr’s have been trying to help find ways of giving me back quality of life and things are so much better than those first two years, but nowhere near where they need to be to hold down even a part-time job. Telling people with mental or physical disabilities they have no worth if they can’t work is b*llshit and needs to stop. I am disgusted to have to say this after reading comments on a friend’s post. Apparently compassion and empathy is something that some folks just don’t have.”
I think Tori really nails it with that comment. She lives with Rheumatoid Arthritis that really affects her hands and I know for a fact that she would love to be working if it were possible. Her friend John Hewak responded with this reply to her post:
“What makes it worse is that we feel the need to justify ourselves, due to both real and perceived judgement from others. People say things like “must be nice”, or “how can I get that?” Well first get f*cking sick, really sick, lose almost everything, navigate the tortuous health system, marshal up a posse of docs, specialist, therapists etc who validate you, get a lawyer, get on welfare, go through the painful application procedure and wait months to hear back while you sink into poverty. Most applicants are rejected first time . Repeat and rinse. If the institutional, bureaucratic, legal, and medical stars align, you might be accepted, in which case you get $1,000 to live on monthly., while you struggle with pain and alienation on a daily basis. Try that for a while. Wow, it’s so great not to work! Living the life of Riley.”
And finally, a third friend named John Poulson replied:
“I have found that people who give the most are the ones who have experienced hardship the most. People who have never experienced hardships have absolutely no idea or clue of what life really all about. It’s not about “things” but the experience you lend or give to others. Having compassion and showing that there are people out in the world that do care. Live; love; laugh. It’s the tears that makes one appreciate the good things in life. That’s my motto. ❤️❤️”
It’s hard to be at home when you’d rather be out earning a living. Everyone thinks we have it so great, but when you’re housebound and feeling like crap, there’s nothing fun about it at all. We tend to be forgotten by our friends and sometimes our family members as well. We don’t get to go out and do “fun” things whenever we want – our time is generally taken up with Doctor appointments or physiotherapy treatments, etc. anyway.
So, to wrap this up, don’t forget your friend or family member who lives with Chronic Pain from Invisible Illness. Call them, ask to stop by for a visit, or to take them out of the house for a bit, whether it’s for lunch, or just a drive. They will let you know what they’re up for and how much energy they have. Even if they say no and they’d rather stay home, just keep in touch. That’s all we’re asking for. And don’t assume we’re being lazy. Trust me…most of us would rather be working if it were possible.