One Is The Loneliest Number

Living with Chronic pain is lonely.
I’ve been very lucky in my life with chronic pain in that I have a wonderful support team. My husband is amazing – he truly gets it and understands what I’m experiencing as he’s starting having some chronic pain issues of his own. My kids are terrific too and are my biggest cheerleaders. I’ve been blessed with amazing friends who are sympathetic to what I go through on a daily basis, and who understand when I need to cancel plans at the last minute because of my health.
But I’m lonely.
Chronic pain causes you to isolate yourself because you hurt so much all the time, you just don’t want to be around people, yet you don’t want to be alone either. You never know when a flare is going to happen, so you tend to not make plans because you don’t want to be that flake who is constantly cancelling things. I’d rather try and make spontaneous plans but it never feels spontaneous to me…it actually feels desperate. And nine times out of ten, when I do make plans, I end up cancelling them because I wake up on the day of the big event feeling horrid. It’s generally because I’m exhausted as well as being in pain, but no amount of napping is going to make me feel well enough to go out. Of course, if I didn’t have plans that day, I’d have slept just fine the night before. It seems that I’m busy sleep stressing about the date, knowing I’m going to wake up feeling crappy, and then sure enough because I’m sleep stressing…I wake up feeling crappy! And even though I have great friends, I’m sure they must get tired of me flaking off all the time too.
It’s even harder when the people in your life don’t “get it”. This quote comes from Stephanie Schwerin Uplook from a Facebook Fibro Group I belong to and is used with her permission.
This is what she had to say:
Fibro sucks…having family members that don’t get it and don’t listen to one word you say when you try to explain how and what you feel. It’s not cancer, it’s not something they know anything about, it’s not terminal, it’s not that bad. You look fine…I’m really tired of being brushed off like it’s not that big of a deal. They don’t know how bad it can feel, the physical and mental toll it takes on me. No clue, no sense in trying to explain it. This last flare lasted a week and it was bad yesterday and today I’m tired and sore, I feel like my body is trying to recover from the flare, depression has kicked in. I’m wondering if this is how the rest of my life will be.
You know what’s the most aggravating?? I’ve changed so much of my lifestyle to get rid of this crap and I’ve seen no change. I swim every day, I have weights for the pool, I watch what I eat, I’ve researched and researched, I walk most days, I take magnesium supplements and I’ve seen a Rheumatologist at the Mayo Clinic. Those are just a few of the things…and for everything I’ve done, it seems to be getting worse with every flare. That’s depressing. I’m 49 yrs old and to watch me get out of a sitting position after only 5 mins of sitting, you would think you were watching a 90 yr old. My husband can’t believe how quick my body locks up, even after I’ve been in the pool for an hour or how I can’t turn over in bed once I lay down. Getting up out of bed is another struggle…I’m so tired of this crap. I really don’t talk much about how and what I feel anymore with anyone. I get tired of hearing myself complain about how I feel, I’m sure they do too. I mostly have a good positive attitude and can deal with this but today, I’m tired, I’m tired of all of this.
Wow…that’s painful to read. But it happens to most of us and if you’re reading this and you have Fibro or Chronic Pain of some type, you’re probably nodding your head and recalling when this has happened to you.
Lately, most of my mornings have started off with a good cry…I’m 56 and it just hit me recently that this is NEVER GOING TO GO AWAY. No matter what I do, or how good I treat my body, this Fibro is never going to go away and in fact, will probably get worse as time goes by.
That’s a thought worth getting depressed about. How does one stay positive when that’s what you have to look forward to…nothing but more days of pain and exhaustion and the people you love not understanding you, so you continue to feel guilty about having a disease like this, like it’s your fault somehow.
All I can say for sure is that it’s NOT your fault, and you have to take as good of care of your body as possible and not let the words of others hurt you. They mean well, but they don’t understand what it’s like for us, because there is no way to make them understand. No description we give them of Fibro can possibly come close to actually living it. Just do your best to keep your spirits up, try not to blame them and do what you can to stay as healthy as possible. Find as many comfort measures as you can on the days you feel the worst and make a list of all the things that are good in your life so you can refer back to it on your really bad days. Those are the things I do. I also try to reach out to help others as it takes me out of my head and puts me into “action mode”.
So what do you do when it comes to loneliness? What do you do when you need help? My dear friend Brenda Teichroeb Heywood suggested this particular blog post today. She is a single mom of 7 children ranging in age from adult to 3 and is going through a very difficult situation right now plus getting ready to move. She had this to say:
“I have always been the type of person who did not want to barge in during a sensitive time for someone. In their pain, I did not want to bulldoze my way in and then expect them to be grateful for my “help”. Yet, here I am, desperate for help in this very drowning experience and so many are sitting back and waiting for me to tell them what I want. I am just so overwhelmed, it would be better for someone to just jump in. I wonder if it would be a helpful post to write to those who live with or know people to struggle with chronic pain. Is it better to jump in and help the person? Is it better to respect space and wait?”
I responded back to her:
“Sometimes the people able to help just don’t know how to. Personally, I think people stand back waiting to be asked because they don’t want to interfere with or disrupt a person’s life. They don’t want to intrude. It’s like saying “call me if you need anything”. They’re willing to help, but the onus is on you to reach out for it.”
And she replied:
“It’s hard. To be so exhausted and then still do the asking. One friend has offered over and over that she’ll help me in any way. I’ve asked multiple times for help with packing and sorting and she has yet to show up. Sigh. This is not for forever, but I’m worn thin. And I think the little girl in me just wants to be rescued. Maybe what we need from others is a person by person thing or season by season.”
Isn’t that how we all feel…like we want to be rescued? Yet the only person who can truly rescue us from loneliness is ourselves. If no one knows how we’re feeling, we can’t blame them. And if no one “gets” what we’re going through, we either have to keep finding ways to explain it or realize that perhaps they just don’t want to get it. Maybe they don’t believe us, or maybe they’re too overwhelmed with what we experience. We frighten them with the intensity of our pain and fatigue and finality of this disease. They know it’s never going to end just as much as we do, but they don’t know what to do or say, so they do and say nothing. Or if they say something, it’s a joke. Or a nasty comment. Defence mechanisms come in all shapes and forms, so we can’t take it personally or we’ll go mad.
Loneliness goes hand in hand with Chronic Pain and Chronic Fatigue and all Invisible Illnesses. It’s up to us to learn how we want to manage it. Do we want to reach out to others or have them reach out to us? We need to communicate that to the people we love, so they know what the expectations are. You’d be surprised how many of your friends may be sitting there, waiting for you to call to say you’d love to get together with them – and they’ve just been waiting to hear from you to give the go ahead.
One is the loneliest number but it doesn’t have to be. Pick up the phone, send an email, say hi on Facebook…do whatever is easiest, but make a connection soon. Turn your one into two.
There is always hope.

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Explaining Exhaustion & Pain

Welcome!
Have you ever felt tired? So tired you could barely move?  Guess what…I have a new word for you!!!
Actually, I think there are many people in my life who this word could apply to…the warriors who struggle along every day despite the illnesses that try to hold them back. My friends and fellow Warriors…you are simply Quanked!!!!!!

Taken from Grandiloquent Words:
Quanked
(KWANK’d)
Adjective:
-Overpowered by fatigue.
-To have the strength reduced or exhausted, as by labour or exertion; become fatigued; be sleepy.Origin uncertainUsed in a sentence:
“After sprunting all weekend, then frooncing to get my chores done, I’m well quanked.”Quanked is a condition in which one’s energy and vitality has been consumed. One who is quanked has used up his or her bodily or mental resources, usually because of arduous or long-sustained effort. To feel quanked at the end of the day; quanked after a hard run; feeling rather quanked; quanked by a long vigil.-See forswunke
Now, in all seriousness, I think the word is an excellent one to describe how it feels to be exhausted when you live with an Invisible Illness. It’s beyond any type of tiredness you’ve ever felt before. It’s sleeping for 12 hours and waking up just as tired as you were before you fell asleep. It’s like climbing a mountain when all you did was go up one flight of stairs. When sleeping on the couch is easier than trying to get up to go to bed.
Now add in being in pain constantly and what do you get? You get you. You get me. You get people like us, who have been living in varying stages of agony for varying periods of time.  I’ve talked with several friends who live with Fibromyalgia, Chronic Pain and Chronic Fatigue plus various other Invisible Illnesses and they’ve described their fatigue and pain like this:
  • It’s like swimming through concrete while being on fire at the same time (this was mine).
  • It’s like constantly having a “pins and needles” sensation that never goes away
  • I feel like I’m being randomly stabbed by a crazed maniac, but that crazed maniac is inside my body and I can’t stop it.
  • There are parts of my body that are numb and parts of my body that are burning and other parts of my body are throbbing and it all happens at the same time.
  • My brain is foggy and I can’t remember things like I used to. I hurt everywhere all the time and I’m always tired, no matter how much sleep I get. I don’t like this me that I am anymore.
  • I feel like I’ve been in a war, but you can’t see my wounds
  • Do you remember when you were young and you could stay up for hours and hours at night and never feel old? Yeah, well I can’t do that anymore. I’m lucky if I can stay up past 7pm and I don’t even have kids. I’m too tired and achy and sore.

There are ways you can try to improve your sleep with Fibro and Chronic Pain and the key is consistency:

  1. Sleep in a quiet dark room with a slightly cooler temperature than normal. Wear a sleep mask if necessary.
  2. Power down the electronics (TV, computer, Smartphone, etc.)  one hour before bedtime. The light from your bedside clock is also enough to disrupt your sleep, so check and see if there is a dim light setting, or face the clock away from you at night.
  3. Set a regular bedtime and wake up time. Establishing a schedule can help the body recognize good sleep habits.
  4. Consider downloading and listening to “sleep music”. There are many recordings that are free, including delta wave music which works with your brainwaves to help lull you into a natural sleep. A “white noise” machine may do the trick for you. These can be found in almost any electronics store and come with various sounds and settings, designed to help your body relax and let go.
  5. Limit Alcohol before bed.  You know you’ve read this before but for good reason. Alcohol may make you “feel” tired but actually will wake you up more often.
  6. Eat a healthy snack 45 minutes before bed. This would be something with protein in it like half a turkey sandwich, a small bowl of whole-grain low-sugar cereal, milk or yogurt or a banana. Eating like this before bed helps stave off the “midnight munchies” where you wake up starving in the wee hours of the night.
  7. Get some exercise! Regular exercise like walking or swimming can help the body to rest well in the evening. Start slow and build up over time. Work with a personal trainer if possible who can help you set up a routine tailored to your specific needs and abilities.
  8. Check with your Doctor to ensure there are no other underlying health issues that could be causing your fatigue (i.e.: thyroid issues, anemia, etc.).
  9. Don’t just lay there – get up! If you haven’t been able to fall asleep within 20 minutes, get up and leave the bedroom. Read or do something that doesn’t involve your TV or computer/Smartphone until you feel sleepy and then try again. The bedroom should be for sleep and sex only. The longer you lay awake in bed for, the more used to being awake in bed your body becomes. You need to break that cycle so getting out of bed and moving to a different room is the smart choice.
  10. Medications should be the last resort but are available to help if needed. Talk to your doctor or pharmacist for information about over the counter medications to try first.

If you tend to be a worrier at night, with a million things running through your head, allow yourself 10 minutes of this. Set an alarm and let your thoughts go wild. At the end of those 10 minutes, it’s time to stop. It takes practice but it gives you the opportunity to get all those worries out without mulling them over for hours. This isn’t the time for solutions, just the time to acknowledge that they’re there. At the end, say something like “I’m glad I had this time to worry about everything, but now I’m going to sleep on them. I’ll deal with them in the morning”. It tells your brain you’ve acknowledged the worries, and you’ll do something about them later. And off to sleep you go.
Another way to sleep better at night is to be organized during the day. The less you leave to chance during the daytime, the less you need to stress at night. “Did I sign Johnny’s papers for camp?”  “Where did I put the chequebook?” “When is the next Book Club meeting?”  Whether you use your smartphone, an organizer or the calendar at home, by having a regular system for keeping track of appointments, meetings and paperwork, you’ll stress less knowing you have it all in one place and you’ll sleep better at night.
Sleeping better isn’t always about being in less pain. It’s about doing all the things you can to make your environment as sleep-conducive as possible which may result in less pain. Removing as much stress as possible from your sleeping area is one of the biggest and best things you can do, so try and think of all the things that will make your bedroom area the most comfortable it can be. Perhaps there are items from this post that will help, such as pillows or a special scent. The key is, whatever you do, do it with consistency. None of us wants to feel quanked.
Remember…there is always hope

Something Different…

And now for something completely different!
Every now and then, I like to put something on this blog that is seemingly unrelated to Chronic Pain, Fibromyalgia and/or Invisible Health. I like to change it up a little as you might remember from Fun and Games.
Today, I’m sharing something that again has been floating around the Internet forever. I’ve changed it to encompass my Children, not just my daughter as the original version goes. I’m proud of both of my kids. They’ve each gone through some difficult circumstances in their lives and come out the other side better people. I’d like to think that advice like this might account for some of it.
Here we go:

❤️❤️❤️❤️  RULES TO TEACH MY CHILDREN ❤️❤️❤️❤️

1. Make your bed every day, even if it’s right before you get in it.
2. You don’t have to wear underwear… if you’re in an accident they’ll just cut your clothes off anyway.
3. Travel light through life. Keep only what you need.
4. It’s okay to cry when you’re hurt. It’s also okay to smash (some) things; but, wash your face, clean your mess, and get up off the floor when you’re done. You don’t belong down there.
5. If you’re going to curse, be clever. If you’re going to curse in public, know your audience.
6. Seek out the people and places that resonate with your soul.
7. Just because you can, doesn’t mean you should.
8. 5-second rule. It’s just dirt. There are worse things in a fast food cheeseburger.
9. You are a woman, you do not NEED a man. Or Vice Versa
10. Happiness is not a permanent state. Wholeness is. Don’t confuse these.
11. If you’re staying more than one night, unpack your bag.
12. Never lose your fierce spirit.
13. Be less sugar, more spice, and only as nice as you’re able to without compromising yourself.
14. Can’t is a cop-out.
15. Hold your heroes to a high standard. Then, be your own hero.
16. If you can’t smile with your eyes, don’t smile. Insincerity is nothing to aspire to.
17. Never lie to yourself.
18. HER – your body, your rules. HIM – re-read that.
19. If you have an opinion, you better know why.
20. Practice your passions.
21. Ask for what you want. The worst thing they can say is no.
22. Wish on stars and dandelions, then get to work to make them happen.
23. Stay as sweet as you are.
24. Fall in love often. Particularly with ideas, art, music, literature, food and far-off places.
25. Fall hard and forever in love with nothing but yourself.
26. Say Please, Thank You, and Pardon Me, whenever the situation warrants it.
27. Reserve “I’m sorry” for when you truly are.
28. Naps are for grown-ups, too.
29. Question everything, except your own intuition.
30. You have enough. You are enough.
31. You are amazing! Don’t let anyone ever make you feel you are not. If someone does….walk away. You deserve better.
32. No matter where you are, you can always come home.
33. Be happy and remember your roots; family is EVERYTHING.
34. Say what you mean and mean what you say.
35. No one will ever love you more than I do.
36. Be kind; treat others how you would like them to treat you.
37. If in doubt, remember whose Daughter/Son you are and straighten your crown, and own it like a boss!
Share your thoughts in the comments…is this advice you would give to your children? What is the best advice you have given to them? What was the best advice you ever received from your parents, or the people who raised you?
Do you think any of these pieces of advice DO relate to having an Invisible Illness? If so, which one(s)?
The reason I ask is that I think ALL of these questions could apply to someone with Chronic Pain. For example, #1 – isn’t it nicer to sleep in a bed that’s fresh and cool and made, with the sheets and blankets “just so”? And #6 – we all know that stress increases our pain levels, so by seeking out people and places that resonate with our souls, we are filling ourselves with the kind of peace that can end up helping us heal.
Let’s look at #14 – Can’t is a cop-out. I’m sure we’ve all said we “can’t” do something. Is that really true, or are we saying we can’t because it’s too painful or too overwhelming? Well, can we try something different then, or break the task into smaller pieces? Can we ask for help? Are we automatically saying the word we can’t, without even trying first? Sometimes we do the “kneejerk” reaction, without even stopping to think if something is possible. If we give it a try we might come to realize that not only is it possible, it’s actually quite enjoyable and beneficial at the same time.
For #25, Fall hard and forever in love with nothing but yourself – well, that seems a little narcissistic but if you don’t love yourself first, can you be capable of loving anything else? I believe there has to be a level of self-love in a person in order for them to love other people. You have to know what love is, in order to give love away. And I truly believe that love is for giving away to others!!
And for #37 – well, I think that says a lot too. On your highest pain days, when all seems lost and you don’t think you can go on, sometimes you’re going to have to remember your roots, straighten your crown and own your life like a BOSS! No one knows you better than you and these are the times you have to pamper yourself like never before. Pull out all the stops on your comfort item list and do whatever it takes to feel better.
Go through the list above and see if you make Chronic Pain and Invisible Illness positives from the rest of the numbers. I was able to and even if you’re not a naturally positive person, I think it can be done.
Remember…
There is always hope!