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.

What It Memes To Have Chronic Pain

Welcome back everyone.

Sometimes, a picture really is worth a thousand words. Today’s blog post is all about memes. As in, 25 memes that capture what it’s like to live with Fibromyalgia, Chronic Pain, Chronic Fatigue Syndrome and Invisible Illness.  I think they speak for themselves.

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Until next time…

there is always hope

Wishing While I (Don’t) Work

It’s Monday, and I wish I was at work.

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 and torturous 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. 

At least I would. 

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!

Chronic Pain Comforts

Welcome back!

When you live with Chronic Pain, whether it’s from Fibromyalgia, Osteoarthritis, Migraines or any other Invisible Illness, you want to find as many ways to be as comfortable as possible. You may or may not be taking pain medications, so sometimes the things on this list are the only things you rely on to get relief. You can find lists like these all over the internet, but I’m going to share my favourite ideas here. I won’t give you product names as there are far too many to mention and everyone has their favourite brands. I don’t tend to use all of these products myself, but many people do. If it works for you, great! If it doesn’t, don’t worry about it…move on and try something else.

Some of these things are for use at home, some are for taking with you when you’re out and some can be used in both locations. I like to have doubles of things such as Wet Wipes. They’re refreshing on the go or at home when bathing is a challenge and you need a quick clean up.

In no particular order:

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Heating Pad: Many people find using a source of heat to be extremely comforting. Just remember to take safety precautions with your skin, and never use a deep heating rub with a heating pad at the same time, or you’re asking to be burned.

Ice Packs: In much the same way as using heat, ice packs can be a lifesaver for pain. Some people with chronic pain use both at the same time…heat in one area and ice in another. Experiment with what works for you.

Eye Mask: When you’re having trouble sleeping, this can be quite soothing, especially if you prefer to sleep in complete darkness. It’s also helpful for Fibro induced migraines.

Ear Plugs: Again, super helpful to block out distractions to help you sleep better and to aid when Fibro migraines strike.

Epsom Salts: Soaking in a hot Epsom Salt bath is one of the best things you can do to soothe aching joints and muscles. There has been an explosion in Flotation Therapy lately in cities all over North America. People spend up to 90 minutes at a time in skin temperature Epsom Salt flotation therapy tanks, literally soaking up the benefits of this mineral. The ratio of Epsom salt to water in most tanks is such that many are more buoyant than the Dead Sea!

Magnesium Rub or Gel: Another essential mineral needed by the body, most of us are deficient. Using a good rub or gel can help alleviate pain. Ask your doctor if a supplement of Magnesium is right for you as well.

Pillows: Pillows for sleeping, pillows for propping, pillows for wedging, body pillows…wherever you need some extra support, finding the right pillow can be crucial to your comfort. Firm, medium or soft; feather or foam, whatever your preference is, you’re going for comfort, so let your body be the guide here.

Shower chair: If bathing is uncomfortable for you, but showing tires you out, consider getting a shower chair. They come in many sizes and shapes and can be found in lightweight, portable designs.

Kindle or e-reader: Take your entertainment with you or leave it at home, but always have your favourite books at your fingertips with an e-reader. There are many services that let you download books for free including your local library.

Body Lotion: Your favourite scent can help keep you smiling.

Magic bag/wheat pillow: These are the type of bag you can either microwave or freeze and use for spots on your body for various aches and pains

Scented candle: Some people find having scented candles burning helps them to relax. Try different scents according to the seasons or just choose your favourites.

Mints or Gum: If you tend towards having a dry mouth, you might want to keep mints or gum handy, or hard candies to suck on. I personally like Tic Tacs as they are small, come in lots of assorted flavours and are easy to pack in even the smallest of purses.

Colouring book: Currently one of the fastest growing trends to help relax you, there is an endless array of styles and designs to choose from. I have several on the go at any time, and use both pencil crayons and felt markers to colour mine. Jenny Lawson’s last book is part story/part colouring epic.

Herbal Tea: Even if you’re not normally a tea drinker, a good herbal tea at night (decaffeinated of course) can be a wonderful way to unwind before falling asleep. Many delicious flavours are there to choose from; I personally like fruity flavours the best.

Water to stay hydrated: Whether you use a water bottle or fancy decanter, having cold fresh water is essential in maintaining optimal good health for any condition. Make sure you keep it fresh by changing drinking the contents often.

Chocolate: Definitely an indulgence but if you’re not a fan of chocolate, at least keep a favourite snack nearby as a treat.

Fan: A small portable fan or a hand fan can help if you have trouble regulating your body temperature.

TENS Machine: Many people swear that using a TENS Machine helps with pain. I personally haven’t found relief with one, but everyone is different. Find out if you can rent one through a Medical Supply Store first before buying a unit, so you know if it will help you or not.

Portable Cane: A foldable cane can be super handy for around the house or outside if you find that sometimes you’re unsteady on your feet. They come in various colours and patterns so you won’t be stuck with “just” basic black if you want something to stand out with.

Essential Oils: These oils have long been thought to have medicinal purposes and many people swear by their properties. There are several good companies that market these and many more little independent companies to check out. Some carry a full range of products designed to use as a set and some carry individual offerings. Find what works for you.

Wet Wipes: The portable bath! When you need to freshen up but you’re just not feeling well enough for a proper bath or shower, wet wipes are the miracle bath.

Dry Shampoo: Like the above, dry shampoo is a spray/shake in, brush out helper for clean fresh hair without having to go through the full and proper wash and dry.

Favourite Pet or Stuffie: Everyone needs someone to cuddle!

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So there you have it, my list of essential comfort items when you need a little pick me up. Are there things you can think of that you would use? Share them in the comments so we can add them to our own lists.

Thanks for reading and remember…

there is always hope

 

 

Good Advice…

I want to share with you some valuable advice from another Pain Warrior. This is a person who lives with Chronic Pain from Fibromyalgia and his name is  Tom Seaman from The Mighty.  He just shared these thoughts recently and they struck such a chord with me that I had to share them with you.

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I used to blame myself for having Fibromyalgia and Chronic Pain and not being able to do things like everyone else. I figured there must have been something I had done in my past to cause it. I was a pretty rebellious teenager and did a lot of heavy partying, including drinking and drugs. I was in a very abusive relationship with my first “love”, the man who became the father of my two children. I have no doubt these things may have contributed to the stresses in my life, along with a huge and ugly surge of hormones when I started my period at the age of 13 (and turned from a normal young girl into a rage monster…no lie, you can ask my sister!).

As other stresses entered my life, my Chronic Pain got worse. So did my Osteoarthritis and my Chronic Fatigue. I was a single parent for a period of time and worried about my kids being on their own so much while I commuted three hours a day and worked at a job I loved. There were other relationships including a marriage that didn’t work out before I finally met my (now) husband Ray who is the finest man I could have ever hoped for. All of it took a toll on my health though, and I believe that a surgery I had in 2004 was the catalyst for my real downfall.

I had been suffering from severe Gastric Reflux Disease…GERD. I thought it was normal to eat a handful of Tums at a time and so had done nothing about my heartburn until Ray convinced me to talk to my doctor. She sent me for tests that showed I had a very severe form of GERD and recommended that I see a surgeon to have a surgery called a Nissen Fundoplication. It was named after the doctor who invented it, and basically what they do is take the top of the stomach and wrap it around the bottom of the esophagus, effectively preventing anything from backing up into the esophagus again. This means no more acid reflux and no more heartburn. It also means you lose your ability to vomit, so if you ever come down with the flu or become pregnant, you are in huge trouble. If you are dry heaving or attempting to vomit, the strain on the Fundoplication can stretch it enough that it loosens so you do bring up the contents of the stomach, and need to have the surgery redone. In my case, I need to go to the hospital and have an NG tube placed down my nose and into my stomach to empty the contents…a procedure I’ve had done 3 times now, so I’m a pro at swallowing the NG tube now.

I went ahead and had the surgery, and for what it was done for, it worked extremely well. I’ve had no problems with heartburn except a very rare exception every now and then. Unfortunately, I suffered nerve damage in my sternum area where an incision was made to hold one of the instruments in the surgery and which caused me tremendous pain for many months afterwards. I was drugged up on morphine pills (plus pills for nausea and itching) for so long that my friends could barely recognize who I was. It got to the point that I had to be hospitalized to wean off the morphine because I was hallucinating that I could hear a band playing, and I kept looking behind my computer to try and find them. The doctors were at the point they were going to crack open my chest to try and find the problem when the Thoracic Surgeon suggested trying Gabapentin for nerve damage and it worked. Unfortunately, that 11 months of pain and misery put me into such a Fibro flare that I don’t think I’ve ever properly recovered from it.

I went into quite a depressive spiral during that time. I was off work for months…I tried to go back but had to take more time off. I missed working…it’s always been my passion and to not be there with my team was hard. I was missing church and my Lifegroup, and missing my friends and times of social gatherings…I was just miserable. Eventually, I got better – well enough to go back to work, etc. but I’ve never felt 100% again. A year later, my body decided to go rogue on me and I ended up in 2006/2007 having 3 separate surgeries in a 6 month period of time; my left ovary burst, my gallbladder gave out and then my right ovary burst, putting me into surgical menopause (I’d had my uterus out at age 28). That in itself was traumatizing, so again, my Fibromyalgia kicked into high gear and I was flaring badly. I had one more surgery in 2007 that actually had to be cancelled while I was on the operating table as the Anesthesiologist couldn’t find a vein for the IV. I have tiny crappy veins and I’d been left waiting all day without liquid. No wonder.

So, my poor body went through the wringer during that period between 2006-early 2008 and I blamed myself so much. I don’t know why, there was nothing I could have done to prevent anything, but still…it just seemed like I was constantly ill or recuperating and I was never able to go out with Ray when he wanted to. All I wanted to do was sleep or rest and I felt like the worst wife in the world. All the chores were left for him, I had no energy to do anything…and yet he never once complained. He truly is the most remarkable man, and I know God picked him especially for me. Ray takes the best care of me and I am so grateful.

When I read the words that Tom Seaman posted, I was reminded of all of this all over again. It’s easy to get into a “blaming yourself” mindset but nothing we’ve done is our fault. Fibro picks its own victims (ooh, I hate that word) and we have to live with the consequences. I know we all try our best to live with it and make the most of life, but we have a tendency to try and fault ourselves I think. We feel guilty that we can’t be there for our families, our friends, our employers, our volunteer work. We drop hobbies and things we enjoy because we just don’t have the energy to do them anymore. We see others picking up the slack for us, and there can be a sense of shame. And often, we retreat because depression kicks us hard.

Today, I say NO MORE!  We have been dealt an ugly hand, but IT IS NOT OUR FAULT. If you are feeling these feelings of guilt, shame, anger, depression or other negatives, STOP. Nothing you have done has caused your Fibro. If you are living with Chronic Pain or Chronic Fatigue, accept it. It is what it is. You can’t change it so you have to accept it. The only other alternative is to wallow in misery and I don’t think that’s an acceptable alternative…and neither do you, honestly. Take Tom’s words to heart, and my words too…

THERE IS ALWAYS HOPE!!!!