Turning Shame to Victory

I should on myself today.

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As a person living with Chronic Pain from Fibromyalgia and a host of other conditions, I tend to live with a lot of shame. I blame myself for not being able to keep up with the chores around the house that I should be able to do. I blame myself for not being able to work as an Administrative Specialist, a job I adored. I had a pity party about a lot of things as I stared at the dust on the TV stand. That’s right…I should upon myself today. I do it often. Too often.

Most people with Chronic Pain do the same thing. When we lose the ability to stay on top of the chores we used to do easily before, we start to feel guilty and ashamed. Dishes pile up, laundry goes unwashed, showering and personal grooming falls by the wayside and moving from bed to couch often becomes our biggest accomplishment. It’s not that we want to feel this way, but pain and the side effects of medication often make us this way. Most of the medications we are given include fatigue as one of the side effects. Others include weight gain, which can slow us down tremendously, nausea, constipation and/or diarrhea, dizziness, and other unpleasant things.

And that brings up another issue. All of these side effects do little to help us feel pretty. In addition to feeling pain and fatigue, we’re often left carrying extra weight so now we feel even less attractive than before. It’s a “damned if you do, damned if you don’t” situation.

So how do we get over “shoulding” on ourselves. We feel like we should be able to keep up with the chores around the house, while we’re still taking care of making dinner and watching the kids and staying on top of their activities and doing everything else expected of us, plus making sure our spouse’s needs are met.

What happens when you live with a spouse who expects you to manage everything exactly like you did before you became sick? A spouse who doesn’t believe that you’re really ill and who thinks it’s all in your head? What if you live without a spouse – if you’re a single parent with no support? Who takes care of you?

In order to find victory in the midst of this shame, try answering some of these questions*, being as honest as you can.

  • What three words/phrases best describe you in a POSITIVE way? Don’t settle for neutral or slightly positive words to describe yourself. Be bold.
  • What do you do best? Everyone has unique talents and abilities — find yours by taking an accurate inventory of your life.
  • What is your biggest accomplishment in the last year? If fibro and depression have been a longstanding part of your life, you likely feel that the last year has been void of any accomplishments. Look deeper — achievements come in all shapes and sizes. Depression works to minimize your triumphs, but shedding light on them magnifies their impact.
  • What are three successes in your life? When you look at your lifetime successes, you begin to see how effective and valuable you can be. You understand your value and build your self-esteem.
  • What are you working on? Having goals and direction in life limits depression. Completing those goals adds another accomplishment to your list and boosts esteem.

Fibromyalgia may change many things in our lives, so it’s important that we remember to find the positives and celebrate them. No more shoulding on ourselves!

So, I’ve decided to give up the guilt about what I’m NOT able to do around the house. I’ve even found new hobbies and activities that I’m passionate about and that I’m actually good at! I’ve become a volunteer for an organization in BC, my home province in Canada, that uses Patient Partners to work with Health Care organizations to help make real change in how health care is delivered. The Patient Voices Network has given me opportunties to speak in front of large crowds, attend educational events and become part of several committees. I’m careful to choose to become engaged according to how I’m feeling and I don’t take on engagements that require weekly participation. Most of what I do involves 3-4 hours of my time per month which is manageable. Twice I’ve had to regretfully pull out of engagements that became too involved for me to manage. Even at the last conference I attended which lasted for 3 days, I was able to build rest time into the daily schedules. I wouldn’t have been able to manage otherwise.

That being said, I don’t want anyone to think that I’m underestimating how awfully painful it is to be forced to change yourself or how hard it is to find new passions to give you a sense of purpose. These are not simple to apply or instant fixes. Please don’t think I’m minimizing the pain of the loss. I want you to know that I think you’re incredible because of the fact that you’ve survived those things and have continued moving forward, no matter how slow. That is victory!

Even when you’re sick and you haven’t found new activities or even if you can’t get out of bed, what I just said about you being incredible is still true. You’ve survived so much and you’re still here fighting! I mention finding new things to do as a way to better self-esteem because I know it’s something helpful when possible, but there are so many things I feel are more important and that have been more fulfilling for me.

Being sick has forced me to learn a lot of lessons that other people might not ever learn – lessons about patience, how to deal with pain and difficulties with grace, good humour and empathy. I’ve learned that the little things are often the big things in life.

All That Matters

It’s the Little Things That Matter
They’re the things that mean a lot
They’re the things that I can count on
When I’m giving things a thought

Oh there’s lots of big grand gestures
That are meant to mean big things
But in the end, they aren’t the ones
That tug at my heartstrings

I prefer the smaller hidden ones
The things that seem quite shy
The little acts that are given out
Not meant to catch your eye

It’s the little things that matter
That make a quiet sound
I love them best from all the rest
They make the world go round

Also, I think I understand more about pain and can truly empathize with others who are hurting. I feel like I can truly help people because of the pain I’ve experienced. I don’t know about you, but I think that’s pretty darn cool. And I feel like it takes immense strength to not only survive chronic illness, but to continue appreciating life and showing love to others when in constant pain. It’s also taken strength to rebuild myself and my self-esteem. I have to give myself credit for that. And finally, as much as I wish I was healthy, I fight for my life every day and I’ve won every single time. If that’s not victory then I don’t know what is! And the last thing I know is that if I’m capable of all this…you are too.

There is always hope

 

 

 

* https://fibromyalgia.newlifeoutlook.com/self-esteem-fibromyalgia/

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:
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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
 
 

Lamenting The Love Of The Bath

One of the curses of having Fibromyalgia is something called “allodynia”.
Allodynia (Ancient Greek άλλος állos “other” and οδύνη odúnē “pain”) refers to central pain sensitization (increased response of neurons) following normally non-painful, often repetitive, stimulation. Allodynia can lead to the triggering of a pain response from stimuli which do not normally provoke pain.
Why am I telling you this? Well, I used to be a bather, rather than a showerer because it had become too exhausting to “stand” in the shower and even if I used a tub chair, I hated having the water hit me. It was painful and to try and explain to people that having a shower hurt me was also painful. Seriously, how can a shower “hurt”? Well, the same way an electrical shock can hurt. For most people, it’s nothing…a tiny nuisance. For me, it’s an actual pain that shoots out of my finger like a firecracker has hit me. My husband Ray couldn’t understand this for the longest time, but once he received some type of electrical shock, I said to him “that’s what static electricity feels like to me” and he finally got it.
Back to the shower though. The water hitting me felt like a million shocks on my body, but bathing was also impossible. It had become far too difficult to get out of the tub in a bathing position even with grab bars, so showers became the norm. When they happened.
I have extreme difficulty lifting my arms above my head so washing my hair is a task. I’ve finally taken to doing it in the bathroom sink. Even though I still have to bend, I can stop and stretch a bit without water hitting me. And while in the shower, I use a long-handled scrub brush for legs and feet and I prefer it when hubby has to come and scrub my back for me – I can barely reach it with the brush (I NEVER shower when I’m alone at home).
As for shaving my legs…well, let’s just say that the sasquatch look is quite popular here and I wear a lot of long dresses.
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Thank God Hubby doesn’t care – and he really doesn’t. He cares about my health and how to best help me, and that’s all that matters. I did recently buy a cheap men’s 3 head electric razor for my legs which makes a huge difference. I like the convenience of it – I can use it quickly if I’m going out and need bare legs and it charges quickly as well.
I have to be honest though, I really miss having a luxurious bath.
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Oh, what I would give to be able to enjoy the showering/bathing experience of the past!! The soaps and lotions and bath bombs and pouffes and the like. Now, I just desperately want to get in, get clean and get out so I can collapse naked on the bed to let my heartbeat slow down and to let my shaky limbs start feeling strong (haha) again. I lay there hoping my temperature will start to regulate itself and then go from overheated to the perfect temperature, to throwing the blanket over chilled me in the space of 30 seconds.
Yes…I wish that I could enjoy the simple pleasure of a shower or bath, but the best I can do is to try not to put it off for too long like 5 days. Or 7. Or 10. And I also need to start buying stock in dry shampoo and baby wipes. Enough said!
Remember…there is always hope!