Sleepless In (Enter City Here)

I’m awake. Again.

I went to bed around 9:50pm feeling pleasantly tired. I was yawning after a long day and having been up since 4:30 am. I followed my nightly routine, got into bed, got comfy and drifted off to sleep.

When I woke up to pee, it was no big deal…I’m not a great sleeper and I figured this was my usual “90 minutes later” wake up call.

I’d slept for 72 minutes. I think that’s a record for shortest time at night. And the worst part was I was wide awake. Like…wide awake. There was no chance I was going back to sleep.

141.-sleep-deprivation-300x224

I hate having insomnia. I don’t know if it’s Fibromyalgia induced, or if it’s because of my sleep apnea or if it’s because of the medications I take, but I haven’t slept for more than 2-3 hours a night in over 5 years now. And once I wake up at 4am-ish, that’s it, I’m up for the day. I get the house ready for the day before my hubby gets up for work – the blinds open, the kettle ready, last nights dishes put away, the cat fed…those sorts of things. I make a coffee, come sit in my recliner and then hubby is up and I’m out of his way while he starts his morning routine. It works for us, and nobody gets hurt! Once he leaves for work, I have my breakfast and then I look at the long day ahead of me and figure out what I’m going to do to fill it.

Do I go back to bed after that? No, because as tired as I am, the best I’ll do is sleep for an hour and what’s the point? If I’m going to nap, I’d rather try to save it for later in the day, when there’s a chance I might sleep longer. That’s my hope anyways, Besides, if I sleep in the morning, I might miss the hummingbirds who come to the feeder on my back deck

PatioFence

Sleep, or the lack of it, is a major side effect of having Fibromyalgia. Statistics show that people who have Fibro never make it into the deep REM sleep the way they need to so they miss the restorative sleep phase so necessary to feel rested:

0503-figure-3

It’s no wonder I can never feel rested! I never get to the restorative stage! I also know I have sleep apnea. I have a CPAP machine and I have tried so many times to use it but I just can’t get used to the mask. I’ve tried a few different ones too, including over the face, and the current choice of the nasal style, but the longest I’ve lasted with wearing them is 4 hours before I wake up ripping them off of me. The worst part is that I am a side sleeper and trying to keep the damn things in place while on your side is next to impossible. Okay, maybe I’m just complaining because I don’t want to use the machine…how incredibly unsexy is that thing! but Hubby should be using one too and he refuses so part of the problem is also resentment.

So, after waking up after my glorious 72 minutes of sleep, and in the interest of good sleep habits I got up. At least I know better than to lay in bed, just hoping I’ll fall back asleep again. Here are some of those good sleep habits I’ve learned about over time:

  • Keep a consistent sleep schedule. Get up at the same time every day, even on weekends or during vacations (hello 4am!)
  • Set a bedtime that is early enough for you to get at least 7 hours of sleep (does 5pm count?).
  • Don’t go to bed unless you are sleepy (I could be there 24 hours a day)
  • If you don’t fall asleep after 20 minutes, get out of bed (but I’m sleeping!)
  • Establish a relaxing bedtime routine (I do this part well)
  • Use your bed only for sleep and sex (well, the sex part at least works)
  • Make your bedroom quiet and relaxing. Keep the room at a comfortable, cool temperature (no problem here)
  • Limit exposure to bright light in the evenings (no problem here either)
  • Turn off electronic devices at least 30 minutes before bedtime. (oops, big problem here!!!)
  • Don’t eat a large meal before bedtime. If you are hungry at night, eat a light, healthy snack. (I’m okay with this one)
  • Exercise regularly and maintain a healthy diet. (I do okay with this too)
  • Avoid consuming caffeine in the late afternoon or evening. (I sometimes mess up with chocolate)
  • Avoid consuming alcohol before bedtime. (I don’t drink)
  • Reduce your fluid intake before bedtime. (usually not a problem)

One thing I have been trying lately is listening to sleep meditation music. There are some really relaxing ones out there that work on the Delta Waves of the brain and you can also find good Apps for your phone. I have an iPhone and one app in particular that is receiving great reviews is CALM by Apple. The other is Spotify which has wonderful playlists of calming music already set up or you can create your own from the many tracks available. I love listening to sounds…the rain falling, trains in the distance, things like that, so I love that option with Spotify. YouTube also has many videos of sleep meditations and if you use a YouTube to MP3 converter, you can also download these to listen to on your phone, whether it’s an iPhone or Android.

Hopefully some of these suggestions will be helpful. I don’t want to be sleepless in any city, anymore. I have slept, it’s happened a few times…I’d just like it to be more:

PamAsleep2

Collapsed in exhaustion. Notice my glasses are still on.

There is always hope!

 

The Opioid Crisis vs. Us

There is an Opioid Crisis in North America and it’s affecting two factions of people – the ones who take and use opioids illegally and the ones who use and take opioids legally as prescribed by their doctors. I want to focus on the second group because we’re not being given our due in the news. First though, let’s look at some numbers.

*Every day, more than 115 people in the United States die after overdosing on opioids.1 The misuse of an addiction to opioids—including prescription pain relieversheroin, and synthetic opioids such as fentanyl—is a serious national crisis that affects public health as well as social and economic welfare. The Centers for Disease Control and Prevention estimates that the total “economic burden” of prescription opioid misuse alone in the United States is $78.5 billion a year, including the costs of healthcare, lost productivity, addiction treatment, and criminal justice involvement.2

**Canada isn’t far behind. “This is a major public health crisis in Canada,” says Dr. Theresa Tam, Canada’s chief public health officer. “Tragically, in 2016, there were more than 2,800 apparent opioid-related deaths in Canada, which is greater than the number of Canadians who died at the height of the HIV epidemic in 1995.”

New data from the Public Health Agency of Canada (PHAC) shows that from January to March 2017, there were at least 602 apparent opioid-related deaths across the country; it is expected that this count will rise as additional data becomes available.

Pressure is being put on physicians in both countries to stop prescribing opioid medications or to cut down on the number of prescriptions they write, and many are complying. So where does that leave us, the People with Chronic Pain (PwCP) who depend on opioid medication to manage their pain in order to have any semblance of quality of life?

Pain

Physicians and Pain Doctors are now more likely to offer Pain Management Programs and techniques in place of opioids. These programs use a combination of non-opioid medications such as over-the-counter or prescription ibuprofen (Motrin), acetaminophen (Tylenol), aspirin (Bayer) and steroids, plus various therapies, including:

  • Physical therapy – A physical therapist or physician who specializes in physical medicine and rehabilitation may be able to create an exercise program that helps you improve your ability to function and decreases your pain. Whirlpools, ultrasound and deep-muscle massages may also help.
  • Acupuncture – You may find relief from acupuncture, in which very thin needles are inserted at different places in your skin to interrupt pain signals.
  • Massage Therapy – can help to relax the muscles that may be causing you pain
  • Injections or nerve blocks – If you are having a muscle spasm or nerve pain, injections with local anaesthetics or other medications can help short-circuit your pain.
  • Biofeedback – where you learn to control involuntary functions such as your heart rate.
  • Surgery – When other treatments aren’t effective, surgery can be performed to correct abnormalities in your body that may be responsible for your pain.
  • Cognitive Behaviour Therapy (CBT) – can change the thoughts, emotions, and behaviours related to pain, improve coping strategies, and put the discomfort in a better context

Are these programs helpful? Do they work? Do they relieve pain?  Well, from my own personal experience, the answer is no, they don’t take your pain away. They do give you the tools to manage your pain more effectively as long as you employ the tools on a daily basis, but when your entire body is wracked with a deep aching, burning sensation that NEVER GOES AWAY, it’s almost impossible to manage that. When my legs feel like bricks and my arms are burning like fire and I can’t move my shoulder to brush my hair and my knee is collapsing when I walk and my spine feels like it’s going to collapse any second from now from the intensity of the stabbing I feel…it’s hard to be motivated that today is going to be a good day.

Now, I have to be honest and admit that I am still taking opioid medication. I have been, for the last 10 years. I have weaned down my dosage, but I still take it. Right now, I take a Slow Release dosage of OxyNeo (Oxycodone) in a dosage of 30mg, 3 times a day. Each dose is to last me 8 hours. Does it work? Somewhat…it keeps my pain at a 4-5 on the pain scale which I can manage with other techniques. If I didn’t have the medication, I would be at a steady 8 on the scale, all the time. Now, what would happen if my Doctor decided to stop my drugs? I would be hard pressed to manage without them, especially after so many years of taking them. Am I an addict? No, I’m not and here’s why. When you have legitimate pain, it’s impossible to become addicted to a pain medication. It’s when you take a medication that you don’t need that you become addicted to it.

I want to share a conversation I had in a chat with a couple of friends who’ve allowed me to share their thoughts and first names. Read what happened to Lindsay and our replies:

What Lindsay said: 
I just had a run in with a pharmacist yesterday. I suffer from interstitial cystitis, endometriosis, chronic ovarian cysts, degenerative disc disease, fibromyalgia and arthritis. Since January I’ve had 9 kidney infections, one or two a month. I have an appointment with an infectious disease specialist at the end of this month, and I have my normal team of Drs and specialists that I already see along with my pain management dr. Well every time I have a kidney infection it causes my IC to flare and my pain because so out of control that I end up in the ER, so my PM gives me extra pain meds to help me get through the infection. Well my normal pharmacy had a pharmacist who’s been snippy with me before and when I handed her the extra script, she blew up on me. She said pain meds don’t help with my kind of pain, it’s only a bandage treatment, I shouldn’t be allowed to take pain meds this long, my regular pain meds should be enough, I’ll OD, my dr is an idiot, I’m not really in that much pain and she wrote a bunch of notes on my account barring me from ever getting extra meds again, including for surgeries etc. I started crying, she used an aggressive tone and lectured me in front of a line of other patients and threatened not to fill my prescription, then did after slamming her hands down and furiously writing on my prescription paper then on my account about how I’m not allowed to do this anymore. I was so so embarrassed and now I’m terrified to have anymore prescriptions or anymore acute pain issues. I hate that this is my life now. I didn’t ask for this!
What I said: 
It’s been said to me by my Doctor that it’s impossible to become an addict to opioids when you actually, truly need them. I don’t get high, and I function completely normally. I could be tested by the police and while the drug would show in my system, I wouldn’t show as impaired. It’s the people who abuse the drug and who take it in a manner it’s not meant to be taken in that ruin it for the rest of us. I would have reported your pharmacist to her association. That was uncalled for and completely unprofessional. She can NOT refuse you unless she refuses to serve you completely. Can you transfer to a different pharmacy for the future? Honestly, if she had done that to me, I would have raked her over the coals….no one, and I mean NO ONE talks to me like that. EVER. I live in Canada and we are facing our own Opioid Crisis here as well. The College of Physicians and Surgeons is cracking down on Doctors who over prescribe or who prescribe too high of a dosage of narcotics to patients. I have been on Oxycodone for almost 10 years now, going from a dose of Slow Release OxyNeo 90mg 3 times a day to 30mgs 3 times a day. plus other meds I take for Fibro, Osteoarthritis, D.I.S.H., Trigeminal Neuralgia, Bipolar Disorder, Diabetes Type 2 and Hypothyroidism, amongst other issues. Three of my drugs clash and shouldn’t be taken together, but I have no choice. I hope you’re able to find a pharmacy that treats you with respect and dignity just like you deserve. Before you give them your business, shop around and ask them what their policy is for opioid customers. Tell them of the experience you had and ask them how they treat that type of situation. Good luck to you and I wish you better, pain-free days ahead. oxoxo
what Angela said: 
I fight this as well and also have issues with my body metabolizing my meds too quickly. The dosages i am on would probably put someone into an overdose but unless you know what i am on, you’d never know i was on anything. Trying to advocate for myself constantly is a huge struggle and mentally draining. The thing is, i am also a nurse and still trying to remain independent through the 9 surgeries ive had in the last 5 years alone. Not only is it a struggle to advocate for myself but i also advocate for my patients the best i can as well. I am constantly fearful that i am going to be cut off from my meds and end up in a pain crisis, in massive withdrawal and become completely unable to support myself. I am also a single mom, so losing my income is a big deal. I am so sick of taking heat because of people who abuse the system. Of every person i know who has chronic pain and take medication, none take them incorrectly, nor do they get high from them. Even if i do take more than usual, i just get sick so if my pain is out of control, i really have to weigh that consequence. I am now in dread because i have to see a new pain management PA next month and my surgeon is moving. Just this thought is really stressing me out.
These are the things we have to deal with as PwCP. It’s not just the doctors we fight with about our medications – it’s the pharmacists as well.
Yes, my friends, there IS a crisis regarding opioid medication and it’s affecting the people who need the drugs the most. The patients. The people with chronic pain. Us.
Me.
Thanks for reading.
There is always hope.
* https://www.drugabuse.gov/drugs-abuse/opioids/opioid-overdose-crisis
**https://www.cihi.ca/en/opioid-crisis-having-significant-impact-on-canadas-health-care-system

That Which Brings Me Joy

Joy is an interesting concept. It can happen because of tiny little things or we experience it because of huge and delightful things. I’ve been tackling a lot of serious subjects lately, so today, I thought I’d talk about joy, and how being happy and thankful can be possible when you live with Chronic Pain and Invisible Illness.

I have a hummingbird feeder that I recently added to my backyard. Apparently, I also have a wasp nest nearby. Right after adding the hummingbird feeder, a swarm of wasps took it over, preventing these tiny birds from having a chance to use their new feeding station. I was mad. This was NOT why I had put the feeder out, so I started brainstorming ideas about how I was going to correct the situation. I went online and one of the ideas was to put out a food source for the wasps and then to move it away from the feeder a little bit each day until it was far enough that the birds would feel safe to eat again. That was all well and good, but it didn’t get rid of the wasps, it just relocated them further down my patio. I wasn’t sure where the nest was, and I wanted the wee pesties to go away completely.

Still, I put out a dish with a super concentrated nectar for them and sure enough, they started leaving the hummingbird feeder alone and going to their own dish. Some of them drowned but what mostly happened is that a bigger swarm of wasps showed up, now that they had a food source. Even more frustrated, I bought a wasp trap and hung it near the bird feeder, hoping to confuse the little buggers and trick them into dying. Oh yes…I can be very mean when I need to be! And yes, this too worked…but obviously the nest was nearby because even more wasps showed up!! So, where is the joy in all this? Well, I watched as the wasp trap did its job…many of the new swarm were attracted to the extra sweet nectar and flew into the trap, but then found themselves unable to get out again. I watched in joy as they struggled to figure out what to do, eventually getting tired and dropping to the bottom where they drowned in the treasure that had called to them in the first place. And my hummingbirds were able to enjoy the feeder that was meant for them in peace.

Not only that but Ray was able to find the nest and give it a good spray with wasp killer, so hopefully, we’ve eradicated them and won’t have to deal with their swarming any longer. Another cause for Joy.

The hummingbirds make me happy. Their energy and the buzz their wings make when they’re at the feeder brings a smile to my face every time. The colours they wear on their jewel-toned bodies flash in the sun, and each one brings a bright start to my day. In the same way, a good cup of coffee and a cuddle with my cat Dorie starts the morning off right, even if I haven’t had much sleep at all.

 

I think that often, people with Chronic Pain forget that it’s okay to feel joy. We’ve been so used to feeling the negative emotions that come with being in pain all the time that we forget there are positives in our lives as well. When you hurt, your focus is on the hurting. There is often desperation around pain because it’s never-ending. We can have a tendency to catastrophize it with phrases like “I’ll never get better” or “this is the worse pain I’ve ever had” yet when good things happen, we don’t do the same thing: “this is the happiest I’ve ever been” or “I’ve never been so happy”. It’s almost like we’re afraid to accept the joy in our lives for fear it’s going to go away and we’ll never experience it again. The thing is, we make our own joy, or we find our own joy…nobody does it for us. So, if you want joy…you have to look for it. Think about it for a minute…what are some things that might bring joy into your life? Here’s a list of 20 items that might get you started:

  1. Watch a sunrise or sunset
  2. Send someone you love snail mail
  3. Volunteer
  4. Get crafty
  5. Bake something
  6. Keep a journal
  7. Take a walk
  8. Do a good deed
  9. Read a novel
  10. Go to the museum
  11. Sing
  12. Take a class
  13. Enjoy a power nap
  14. Log off Facebook
  15. Practice positive affirmations
  16. Mentor someone
  17. Plant a garden
  18. Have a warm bath
  19. Go to an art gallery
  20. Give more compliments

Most of these ideas cost nothing but reap huge benefits in the joy department, and you deserve them! Not only that, but the more joy you bring into your life the more you fire up the endorphins that release the body’s natural painkillers, so you’re physically doing good to your body as well as mentally doing good to your body. That’s a 2 for 1 special you won’t find in any store!!

You are worth every joy possible. With everything your body goes through on a daily basis, it’s natural to feel beat up and unworthy of happiness. Those are your brain weasels talking. Brain weasels are the voices of depression that come with chronic pain and those weasels lie to you all the time.

BrainWeasels

They don’t want you to be happy so they’ll tell you all sorts of lies to try and convince you that you don’t deserve joy in your life, but THEY ARE WRONG. You have every right to be as happy and joyful as the next person. So take a chance on happiness EVERY chance you get and see if it doesn’t start your day off on a better note. And tell those brain weasels they can go the same way as the wasps!

There is always hope!

 

I Want You To Want Me

I’m tackling a tough topic again today – intimacy when you live with Chronic Pain. If you remember the Cheap Trick song, it’s been on my mind lately:

I want you to want me.
I need you to need me.
I’d love you to love me.
I’m beggin’ you to beg me.
I want you to want me.
I need you to need me.
I’d love you to love me.

How do you enjoy an active and healthy love life when you’re in pain all the time. How do you appease your partner, who may not understand what it’s like to be in pain 24/7. Even when you’ve explained it a million different ways, when it comes to talking about sex, and how painful it can be, it’s not an easy conversation, no matter how long you’ve been a couple. And your sexual orientation makes no difference either.

Intimacy is the fuel that keeps a good relationship running. It encompasses so much more than just sex. Think about the different ways it’s defined in the Thesaurus:

  1. the state of being intimate.
  2. a close, familiar and unusually affectionate or loving personal relationship with another person or group.
  3. an act or expression serving as a token of familiarity, affection, or the like, to allow the intimacy of using first names.
  4. an amorously familiar act; liberty.
  5. sexual intercourse.

Intimacy is also about being close emotionally. When was the last time you went on a date? When was the last time you actually sat and talked to each other ABOUT each other? Not about work or the kids, but about the two of you and how you’re doing. What’s new, what’s real, what you love about each other? When was the last time you looked into each other’s eyes and said “I love you” and really meant it?

If you haven’t dated for a while, maybe it’s time you did. Here are 25 easy date ideas that might get you started in the right direction:

  1. Go to a community play,
  2. Do an inside or outside picnic
  3. Work out together
  4. Go roller skating or ice-skating
  5. Movie marathon with ice cream sundaes
  6. Play hide and seek in a cornfield (or the woods)
  7. Go on a walk around your neighbourhood in the evening
  8. Go to estate sales together
  9. Make a romantic dinner at home
  10. Build something together
  11. Go bowling
  12. Go hiking!
  13. Find the best happy hours in town and make the appetizers your meal
  14. Have friends over and play board games
  15. Go to an antique store and talk about the past lives of old objects
  16. Get some thrift store tennis rackets and go to your city’s free courts
  17. Go to the neighbourhood pool
  18. Fly kites!
  19. Test drive an expensive car
  20. Go on a tour beer, food, etc.
  21. Find out what tours businesses in your city offer and try one out.
  22. Go thrifting or garage sale-ing together
  23. Do a breakfast date
  24. Find a free (or very cheap) class and take it together
  25. Go to the animal shelter and pet the animals

So once you’ve reconnected and you’re ready for sex again, the Mayo Clinic offers these suggestions when you have a partner who lives with Chronic Pain*

Sexual intercourse is just one way to satisfy your need for human closeness. Intimacy can be expressed in many different ways.

  • Touch. Exploring your partner’s body through touch is an exciting way to express your sexual feelings. This can include holding hands, cuddling, fondling, stroking, massaging and kissing. Touch in any form increases feelings of intimacy.
  • Self-stimulation. Masturbation is a normal and healthy way to fulfil your sexual needs. One partner may use masturbation during mutual sexual activity if the other partner is unable to be very active.
  • Oral sex. It can be an alternative or supplement to traditional intercourse.
  • Different positions. Lie side by side, kneel or sit. Look in your library or bookstore for a guide that describes and illustrates different ways to have intercourse. If you’re embarrassed to get this kind of book locally, try an online book retailer.
  • Vibrators and lubricants. A vibrator can add pleasure without physical exertion. If lack of natural lubrication is a problem, over-the-counter lubricants can prevent pain from vaginal dryness.
*https://www.mayoclinic.org/chronic-pain/art-20044369

The key factors to intimacy are trust, respect and honesty. You need to be able to trust your partner won’t push you into something you’re not physically able to do and will respect your limits. There needs to be honesty between the two of you and with yourselves as well. Don’t use your Chronic Pain as an excuse to get out of sex if it really isn’t a problem…that’s not fair to your partner. If you’re avoiding sex for another reason, then be honest. If you’re mad at your partner for something they’ve done, then say so. Tell them what and why and talk it out.

Don’t use your health to avoid other issues, because you’re simply breaking the trust and respect factors when you do that. You already have enough physical pain in your life – don’t add mental pain as well. Intimacy is too valuable a commodity to just throw away. Keep working on it and before you know it, you’ll be building and rebuilding the relationship of your dreams. And that’s no Cheap Trick!

There is always hope

 

 

 

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.

The Mighty Strikes Again!

I really love The Mighty. It’s an empowering website for people with Chronic Illness to share and learn and they encourage input from people like me, who live with Invisible Illnesses. This is from their website:

The Mighty is a digital health community created to empower and connect people facing health challenges and disabilities.

We have over 1 million registered users and are adding a new one every 20 seconds.

Our stories and videos are viewed and shared more than 90 million times a month.

But those are just stats. This experience from a community member is what we’re really after:

“How is it that I read an essay on The Mighty and it is the only place in the world where I feel truly understood? Time and time again you speak to me through your contributors. I read this headline and it could have come from my very lips…I wanted to say thank you – words can never express how truly grateful I am to the author for sharing her story, for all Mighty contributors, and to The Mighty itself. You have changed my life. I have made a close friend who lives many miles away because of our shared pain. I gain insight every day and I finally, finally do not feel so alone in this world. Thank you. Bless you!”

I’ve had one story published already and now they’ve gone ahead and published a second article of mine. They took my post Some Body To Love and condensed it so it can be shared with the world. I’d love it if you’d check it out here!!

There is always hope!

Creature Comforts

Oh, today’s post is a goody!!!

Today, I’m talking about creature comforts…and by that, I mean the pets that bring us comfort when we’re in pain, or just needing a little extra loving. This is a guest post and I’m going to be introducing you to several of my Internet friends and their furry companions.

Lets start with Catherine Taylor and her Bichon Chloe. Catherine shared this with me:

Bichons in general are very loyal and Chloe and I bonded from the start. It was like she imprinted on me … she was my shadow. When she was a pup, we had her outside one day, playing in the girl’s sandbox/play centre. It had a small slide and the girls put her at the top of it and ‘encouraged’ her to slide down it. Chloe was having nothing to do with it. I went to the bottom of the slide, crouched down and called to her. She turned around and saw me and tentatively made her way to the top, looked around once and then slid down to my waiting arms. This dog trusted me 100%. I love animals and feel privileged when an animal trusts me. I believed this dog would risk her life for me, if she had to. We were friends for life.

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Chloe comfy in the chair

When I developed fibromyalgia, she stayed by my side as I spent more time in bed resting. She could have stayed near the action (and food) with other members of the family downstairs, but she became a fixture, literally, at my feet and often lying over them. It was like having a weighted therapy blanket (didn’t know about those back then). She wasn’t too heavy, just the perfect amount of pressure to make me feel snug and my feet warm, which are usually cold. She’d stay for the duration while I slept. Wherever I was, she was beside me.

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Chloe laying on Mommy’s legs in bed!

As anyone can tell you, it’s comforting and soothing to have the warmth and devotion of another being close by, one that doesn’t require anything from you. Studies have shown that blood pressure and heart rate decrease when petting an animal. Chloe passed away last year and I miss having her by my side.

What a sweetheart!!!

Our next guest is Elaine Zena Feather and her precious rescue baby Felix

Felix is my gorgeous rescue fur baby. He’s been with me almost a year and a half and he was barely more than a kitten when arrived. My granddaughter named him Felix which is also special. We’re not sure if he had been abandoned but he was definitely very nervous. He was happy to come to me straight away and have cuddles but he kept finding little hidey holes when we first got home (including diving into my drawer under the bed and he would not come out lol. My son had to remove the drawer and coax him out. Before long he made himself right at home, stretching his long, furry body out on the carpet.

 

He is such a loving boy and will lie right next to me wherever I am, snuggling up and wanting lots of cuddles. He will lie on my lap and turn himself over so he’s lying in my arms. Then he’ll put his paws up to my face for me to kiss them. I cannot imagine my life without him. He follows me round like a dog and comes running when I call. He’s very vocal and “chats” away to me. He really is a comfort and is loved by all my family. He is also very good with my grandchildren especially my grandson who was totally besotted with him. He has beautifully long fur and is happy to be brushed and will even roll over for me to do both sides lol.

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Felix showing off his luxurious fur

His one “downfall” is he keeps bringing me “presents” which I do my best to rescue and then release back into the wild. Unfortunately I have ended up being bitten a few times by rescued mice and boy does it hurt. I just sometimes forget because I just want to try to pick them up before they disappear somewhere in my house that I won’t be able to find them. I can’t really blame Felix though because it’s what cats do and we have amazing open fields at the back of us which is a great hunting ground. They say having an animal reduces stress and stroking them is very good to reduce blood pressure but also to keep you alive longer. I totally believe that’s true cos having my snuggles with Felix is wonderful and makes me forgive him anything……..even him waking me up at 4am to go out lol xxx

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Elaine and Felix cuddling each other

I love how furry Felix is!!

Our next guest is Julie Villefana and her Old English Sheepdog Don Pedro

I have been living and coping with having Fibromyalgia as well as Chronic Fatigue Syndrome for many years. At the beginning I slept a lot, as well as cried and generally felt very unhappy. My mum lived with us, so I was busy hanging out with her. She basically got me out and about as little as I did. Then about 10 years ago my mum had a stroke and was first hospitalized and then placed in a Nursing Home. I was devastated. I had lost my only friend who really understood, or at least tried to understand my new-found life. Even though I am happily married, my hubby is away a lot. So, about 8 yrs ago we decided to get an Old English Sheepdog. We named him Don Pedro and he was 8 weeks old when we brought him home.

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8 weeks old

He was so small that he fit on my mum’s tray on her wheelchair! He forced me to not only have to take him out to do his business and general exercise, but also to learn to smile again. He brought and still does, bring such joy to the world! He attracts attention wherever we are. Many stop to ask questions about him, to which I have to reply, naturally. He made me happy again. Sometimes I feel that I have to dress the part to just take him outside to be seen by the world. Plus, he is such a character and certainly has a personality of his own.

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Playing with his girlfriend

If it weren’t for him my life would be very much duller. He seems to have adopted my lifestyle in that he rests when I do, which is a lot. Plus he seems to sense when I am at my worse and snuggles beside me on our bed. (We actually had to get a bigger bed as he tends to jump in ours and slowly push us to the edges so that he can stretch out)! I post a lot of pictures of our Don Pedro on Facebook and Instagram, etc, because he is so photogenic and adorable to us at least.

We have been on the front page of the news twice, including even winning a Lookalike Competition! And now that we have recently moved to Victoria, he is constantly being photographed by the massive array of tourists. Yes I realize that his breed don’t live forever, and we hope that he will be with us for many more years of sheer joy, we know that he will leave us one day, where I will have to carry on as best I can, but for now I will enjoy everything that he has to offer. I thoroughly recommend an OES for anyone housebound and in constant pain as am I.

 

 

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Julie and Don Pedro enjoying the snow

I can’t wait to meet Don Pedro as Julie and I are friends in real life and she just moved to my town of Victoria, BC!

And finally, there’s my pet, Dorie. What can I say about my sweet kitty? We’ve had her for 9 years now, since she was a kitten and she is definitely MY cat.

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Dorie at 10 weeks old

She plays with Ray but she cuddles with me and I’m the one she curls up to at night when it’s bedtime. She sleeps tucked right up beside my tummy, as tight as she can and only moves when I need to get up to pee. She waits for me to come back and get comfy and then *boom* she’s right back in there again!

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She seems to instinctively know when I’m having a bad day too. She loves to come curl up in my lap on those days, offering me comfort. On other days, when I’m blogging or otherwise occupied on the computer, she’ll stay close enough to wait to an opportunity to sneak onto my lap whenever she can!

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Just waiting for her moment!

Dorie has two special toys that she considers her babies – a blue crocheted string and a small stuffed bunny. She carries Bunny and String around the house, chirping at them and leaving them in the strangest places. We’ve found them in the food bowl before, and I once found Bunny in the recycling bin and the bathtub! Our rule is that we never move them unless absolutely necessary.

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Bunny and String

Here I’d only set my motorcycle helmet down for a short while but apparently it was a good home for both toys! Dorie makes me laugh with her antics and I think that’s one of the best things a pet can do for you when you live with chronic pain – laugh!

Do you have a pet that helps you feel better? Tell me about it in the comments below and if you’d like to be featured in a post like this in the future, send me your information in the Contact Me form and I’ll be in touch!

Thanks for reading!

There is always hope!