The truth of the matter is that there are as many different types of pain, as there are theories about what good “pain management” should entail.
I was diagnosed with Fibromyalgia over 10 years ago, and with an “auto-immune disease of unknown etiology” roughly three years ago, which means that I’m intimately acquainted with what it means to live with chronic pain and fatigue.
Usually, pain is our body’s way of warning us that something is wrong, and we need to take action to “fix” whatever is wrong – whether injury or disease. In this case, pain is definitely our friend, because it prevents us from further injuring ourselves and / or prompts us to get medical attention.
In the case of a disorder like Fibromyalgia however, the pain is like a constant “false alarm” because it’s not warning us about anything we need to action.
There is also psychological pain, which is one of the toughest types of pain to overcome.
Recently I was part of a discussion regarding whether “invisible” illnesses can be considered disabilities – specifically with regard to parking in a parking bay reserved for people with disabilities, or being allowed to “cut in line” due to being unable to stand for long periods.
An example that clearly illustrated this point is the following: A person parked in a parking bay for disabled people (let’s call her “Eve”). A stranger berated her for doing so. At the end of the tirade “Eve” pulled up her trouser leg to expose her artificial limb. If she’d been on a wheelchair people would have treated her very differently, but (because she “looked normal”) a stranger jumped to the wrong conclusion.
There are literally hundreds of diseases and disorders (both physical and psychological) that can’t be seen from the outside. Sadly, it seems that only people who have experienced, or are experiencing, living with a particular issue (like Fibromyalgia and Depression, just to cite two common examples) understand what a struggle it is to do all the things that healthy people take for granted.
Our greatest challenge as caring human beings is to stop judging people by their appearance. For example, not all obese people are over-eaters, sometimes it’s the medication they’re on that makes them put on weight, and makes it extremely difficult for them to lose it again.
The bottom line is that a very large number of human beings worldwide are not only suffering because of their invisible diseases or disorders, but are also constantly hurt by other people’s attitudes towards them.
I wrote this post in the hope that it might lead some of you to stop jumping to conclusions, and to take the time to really get to know your fellow human beings.
Do you, or one of your loved ones, suffer from an “invisible illness”? How do you cope? What do you think could be done to help people with these challenges?
Your comments on this topic are very welcome.
Photo credit to http://capnkelkel.deviantart.com/ (Creative Commons Licence)
What is my purpose?
Apart from having given birth to two amazing young people, what legacy have I left if I were to die today?
The truth is that I spend an awful lot of time doing nothing of any real importance. I haven’t even kept up writing in my journal, never mind posting meaningful content! I feel stuck and pretty useless. Am I having a mid-life crisis?
On the positive side, I’m so blessed in so many ways! I have an amazing husband who is super supportive of me and everything I do. The best son & daughter any mother could wish for. I have many Facebook Friends who are always ready to send me love & support.
On the negative side, living with chronic pain and fatigue is exhausting and demotivating! I try so hard to stay positive and not to let my Fibromyalgia affect the lives of my loved ones. Unfortunately, I feel that (most days) I’m losing the battle. All I want to do is sleep, because that’s the only time I’m not in pain! I’ve already spent thousands on different doctors, therapies and medicines, all to no avail.
I’m 44, my grandma is 87 and still going strong. This could easily be the “halfway point” of my life! I don’t really know what the next 44 years hold in store for me. I do know, however, that something needs to change!
I wrote the above on 5 February 2013 and not much has changed!
I’m now 47 years old, my 90 year old grandmother is still going strong, and my “baby” daughter is turning 20 tomorrow.
I only started writing again (for World Moms Blog) last month because (apart from my Fibromyalgia) I developed another auto-immune disease that made it painful to type, and exacerbated my general pain and fatigue. Luckily my new Specialist has started me on a new medication that helped me get back to “normal” pain and fatigue. So, I’m back to where I was 3 years ago!
Thank you to all of you who have stood by me during this difficult time. I’m sincerely hoping that I can continue to get better.
Watch this space …
The picture has a Creative Commons Licence
This post was written by one of my favorite guest bloggers; Victoria Rinfreschi.
She is a really talented 17 year old, whose passions include photography, art , and the occasional blog post (:
“There’s always light at the end of the tunnel”… that’s as redundant as me saying the toast is toasted. Of course there is light at the end of the tunnel, unless it’s night time, in which case we are all f***ed.
Life has a funny way of throwing us curve-balls when we least expect them. The funny part isn’t the tragedy itself but rather the unknown prophets who seem to emerge with a repertoire of fortune cookie mantras. They seem to pop up out of nowhere like weeds and, like weeds, once they sink their roots into fertile soil (in this case, said tragedy) they remain, forever sucking the life out of you.
You have to ask yourself, who comes up with all the nonsense “motivational” expressions that we so callously throw at people in difficult times? I always imagine a 30-something year old, fat Joe, in a pizza stained t–shirt and underwear, sitting in front of his computer, making money off the number of shares he gets for his recycled fortune cookie quote. The most ironic thing of all is that none of those “whatever you set your mind to, you can do”, “Life is what you make it” bullshit, ever helped him amount to anything in his life.
Have you ever taken a moment to consider how ridiculous these sayings are, or were you too caught up in the pretty pictures and number of likes to notice? Just in case you were, here are a few, just to prove my point;
“In the end, it’s not going to matter how many breaths you took, but how many moments took your breath away.” What? Like that heart attack, or near drowning experience, or maybe that really bad asthma attack that left you needing a nebuliser for a week? Yeah, you’re right; not breathing is so much more memorable than regular old breathing. Sure it sounds like a pretty quote, but logically it makes no sense. I don’t know about you, but none of my happy memories involve a lack of oxygen!
“When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile,” – because life really cares about you and your emotions. Because it’s life’s fault that you decided to buy a new phone instead of paying your bills, leaving you in so much debt that you can’t afford to eat. Yes, life will be really heartbroken by your thousand reasons to smile. Good on you, blame a non-existent, man-made entity for all your failures in life. Demonize your imaginary “frenemy”, because that will solve all your problems.
“What you allow is what will continue.” – I must say, the author of this one was a real genius. I wonder how long it took them to realize this. They have yet to realize that their realization wasn’t as profound as they originally thought it was! What a shame though. I’d give this an A for Almost.
These are the types of pointless expressions that we cycle and recycle around the web on a daily basis. If that wasn’t bad enough, we feel that it is our duty as caring, loving individuals, to spew this nonsense at any and all unsuspecting victims. We then go on with our lives, feeling good in the knowledge that we have now helped someone through a rough patch with our invaluable, “original” piece of advice! Their lives have forever been bettered now that they know that; “Incredible change happens in your life when you decide to take control of what you do have power over, instead of craving control over what you don’t.”
Don’t you agree?
I have pretty much allowed this blog to die but, as a wise friend just reminded me; “…writing has always been one of your passions. This is not a passing phase or frivolity with you.” This begs the question; why have I not been writing?
The sad truth is that I suffer from Paralysis by Analysis compounded by low self-esteem and procrastination caused by perfectionism! Allow me to elaborate. Due to the fact that I don’t think I’m good enough, I try to “analyse” what I should / could do better and end up stuck in an “if then” loop. Just like a computer that freezes! Instead of trusting my instincts (which, ironically, is what I always advise others to do) I keep on worrying that if I write about this or that topic then people won’t like me / like the way I write / they’ll misunderstand my intentions etc. Basically this then “paralyses” me and I don’t write anything at all!
As if that isn’t bad enough, when I finally get “unstuck” and actually write something, I leave it in draft mode because I don’t believe it’s good enough to share! Every time I write something, I always have the best of intentions. Yet, so often, I leave a post unfinished because it doesn’t meet my perfectionist standard! Ironically I’m never critical of other people’s posts (even when I pick up grammar and / or spelling mistakes) because I look past that to their message. Invariably, I leave them a positive comment to encourage them. This begs the question, why can’t I be as kind to myself as I am to others?
I call myself Phoenix because I’ve been burnt (psychologically) and this is supposed to be my “rebirth”. Like the Phoenix I should rise from the ashes of my past and fly off, triumphant. Yet I still find myself chained by the same fears and feelings of worthlessness. It doesn’t look like this Phoenix is going to fly anywhere anytime soon!
I once read that the first step towards wisdom is the acknowledgement of one’s own ignorance and failings. I’ve totally mastered the first step … I just have no idea how to take the next one!!
Kirsten Doyle of Running for Autism nominated me for the Liebster Award and asked the following questions:
1. How much time do you spend on the Internet each day (no judgment, I promise!) About 1hr or so
2. What is the dumbest thing you ever did? I ignored my intuition and agreed to date a “man” who abused me
3. What is the smartest thing you ever did? I got out of said abusive relationship
4. If you had to entrust one person with a winning lottery ticket, who would it be? My husband
5. What is your earliest childhood memory? Being disappointed that the little sister I was waiting to play with was a crying infant instead of a child my age!
6. What one thing (if anything) would you change about your physical appearance? I’d love to weigh about 40kg less than I do.
7. When did you last hand-write a letter to someone? I can’t remember for sure, but probably about 20 years ago.
8. Have you ever had a falling-out with your best friend, and did you make it up? One of my best friends is my husband and we did have a rough patch a few years ago. Everything’s great now!
9. If you could have any job in the world (regardless of qualifications needed), what would it be? Author (ideally of a best-selling fiction title)
10. BlackBerry, Android or iPhone? Android
11. If you could have dinner with any famous person, living or dead, who would it be and why? Oprah, because she’s the one who first encouraged me to “live my best life”. I’d like the chance to thank her.
My questions for the people I nominated are:
1. If money was no object, what would you do or stop doing? Why?
2. What did you want to be when you grew up?
3. If you had a “do-over” what would you change about your life?
4. What do you want to be remembered for?
5. What is your pet peeve?
6. What is your star sign?
7. Do you believe in horoscopes?
8. What is your favourite food?
9. What is your favourite beverage?
10. What is your favourite colour?
11. If you were granted 2 wishes, what would you wish for?
Truth is I don’t feel I’m good enough.
I read other people’s blogs and love their way with words, witticisms and wisdom.
I don’t think I measure up … so I fall back into my old habit…I stop trying.
That’s where I was when, to my immense surprise, I received a Liebster Award from Kirsten Doyle of Running for Autism! Kirsten is one of the bravest women I know and I love the way she writes, so getting mentioned by her in the same post as some of my other all-time favourite bloggers is HUGE for me!
“The Liebster Award is a very neat thing that bloggers do for each other. When you receive the award, you acknowledge the person who gave it to you, and then pass it on to seven other bloggers that you love. It’s a way for bloggers to give each other a shout-out.”
Here are my nominees:
1. Running for Autism by Kirsten Doyle: Maybe I’m breaking a rule since she’s the one who nominated me, but I truly enjoy her perspective on everything! I have learnt so much through her posts, especially about the challenges and delights of parenting a child with autism alongside a neurotypical one. With her brilliant sense of humour, Kirsten never fails to entertain and instruct her readers. I feel extremely fortunate to be counted amongst her friends.
2. Kloppenmum by Karyn van der Zwet: This New Zealand mom has her priorities straight! Her favourite quote is: “There are two lasting bequests we can give our children. One is roots. The other is wings.” (by Hodding Carter Jnr – Pulitzer Prize Winner) I love her fierce determination to do what’s best for her boys, no matter what. We share a love of coffee and smart humour.
The following is an original post by a 16 year old. It is published uncut and unedited. The photo credit also goes to this multi-talented young lady.
As plain as the nose on my face. Accepted, admired even. But underneath, something rarely acknowledge. A dark demon. An eater of souls. It’s our greatest defeat.
6 years, and not a word. No happy birthdays or loving charismas cards. No I miss you and I love you.
During that time I grew up, just as the black hole of emptiness grew darker, wider. Only one person could have filled that hole. But she abandoned me. At the insecure age of 12 my “grandmother” returned into my life, disappointed at the lack of a bouncy, bubbly, loving, trusting presence. The presence of a little 6 year old girl.
My greatest defeat. Her lack of acceptance. My greatest defeat. Her lack of approval.
My greatest defeat.
A year of puppy love and misplaced innocence. A year filled with laughs and stupid conversations. Belonging. A modern day Romeo and Juliet. Except this Romeo was a fake. My misplaced trust and naïveté landed me in a romance destined to fail.
“Hi, my name is Tristan.” The only truthful statement he ever made.
Now here we are, 12 months later, the morning of my granddad’s death. The perfect time, don’t you think? To air his dirty laundry.
My greatest defeat. His lack of honesty. My greatest defeat. My wasted love. My greatest defeat. My stupidity.
My greatest defeat.
Behind every smiling eye, is one filled with tears.
Everyone has one. Showing it off to the world. We celebrate it. And when cracks start to show? We plaster over it. Covering the darkness, because we wouldn’t want anyone to see. And if someone happens to catch you at a moment where your cracks are starting to show? Well they don’t dare to ask. It’s not accepted. It’s not wanted. No one cares. After all they have their masks too. The ones they are busy patching up.
An endless loop, one with no break. The more we ignore it, the more the demon is able to feed. It feeds off us every day. And one day. We won’t be able to cover up the cracks left behind after the earthquake. One day a tsunami will arise. Unstoppable. Uncontrollable. And that mask will be gone. And so will everyone else.
We try so hard to protect ourselves. Certain things, no one cares to know. It’s been decided, by someone with a self-proclaimed importance. It has been decided, so it shall be.
But it doesn’t have to stay that way. Our demon feeds on our darkness. On our unheard cries, our unsaid thoughts. It feeds off our lack of acknowledgement and our misconceptions.
It feeds off our isolation.
I think it’s time to starve our demon. It’s time to stop plastering up the cracks. It’s time to let the demon out, because once he is gone, once you are able to let it go, he will no longer have control over your life.
So I’m going to take off my mask, and let my face feel the soft, warm touch of the sun. I will let myself truly breathe for the first time.
I will revel in my freedom.
This time of year (which spans roughly from end November until beginning January) is when most people are on leave from work and everyone is expected to be happy. But are we? The unpopular truth is that death by suicide and from road accidents tends to skyrocket during this same period that should be oh so jolly!
I don’t have any answers, other than my own life experience. I think a lot of the misery is caused by the media perpetuating this idea of large, happy family gatherings that “should” take place around Christmas. Many of us simply do not have the kind of families that are portrayed by the mass media and, in some ways, this makes us feel inadequate or “hard done by”!
This year I will be doing things differently for the first time. Instead of worrying so much about what “should” happen during the holidays, my family and I will be starting a new tradition. The tradition of doing what we want to do instead of doing what is expected of us! To be honest this feels a bit strange …. but then again, the definition of insanity is to keep doing what you’ve always done and expecting a different result!
This year has been an exceptionally difficult one for many people. I sincerely hope that the “end of the world” that people fear will happen on 21 December will actually herald in a paradigm shift. My fervent wish is that the world John Lennon described in his song “Imagine” will actually come to pass in my lifetime.
“You may think I’m a Dreamer but I’m not the only one. Maybe one day you’ll join us and the world will be as One!”
I wish you all a Peaceful Festive Season and a Better New Year!! Just keep spreading the love ….
This post is in response to the following question posed on World Mom’s Blog: “Share with us those aspects of mothering, that inspire you. It could be from the women in your own community/culture or from your own mother/mother-in-law/
I remember the moment vividly. My 12 year old self sitting on the floor of my bedroom crying bitterly over the latest unfair and undeserved punishment I’d received. After several minutes of heartbroken sobbing, I experienced a moment of clarity. This was the moment when I started consciously taking mental notes of what I would never put my children through! I called it my “little black book” and it helped me deal with the next 5 years until I left home. From that moment on, instead of getting upset, I’d “take note” in my mental book & I’d “file it away” for future reference.
I’m 43 years old now and I can honestly say that I’m grateful for what I experienced as a child. Thanks (at least in part) to my mental notes, I have an excellent relationship with my teenage children!
I’d like to share a few of the things I learnt which I feel contributed to the loving and mutually respectful relationship I enjoy with my husband and children:
- Be Honest and Admit Your Mistakes – we’re all human and we do, at least occasionally, lash out in anger and / or frustration. Be the person you’d like your children to be and acknowledge it if you acted or reacted badly. Trust me, your children will respect you more if you’re able to do that!
- Set a Good Example – children will do what you do and not what you say! Children will not respect a hypocrite, so be a person of your word.
- NEVER “lable” your child – we’re all human beings and we all have our share of both positive and negative traits. My father teased me about being fat even when, objectively,` (according to photographic evidence) I was NOT! This led me to feeling fat and eventually becoming fat for real!! (I’m now approx 30kg heavier than I should be – but don’t feel any fatter than I did when I was 30kg thinner!!). By the same token, if you tell your children that they’re “stupid” they’ll live up to your expectations!
- Keep your Promises – never promise what you can’t or won’t deliver. This erodes the trust that your children have in you. Rather under promise and over deliver!
- Be Consistent – NOTHING is worse for your growing child’s self-esteem than not having consistent rules and boundaries. My biggest problem growing up was “walking on eggshells” – since the “rules” weren’t consistent I was always afraid of getting into trouble!
I feel I was “inspired” to become the mother I am today, by learning what didn’t work, first hand!
Did you have any experiences that, though distressing at the time, ended up teaching you a valuable lesson?
As a mother, I can’t imagine anything worse than being told that one of my children has cancer …. except maybe realising that I can’t afford the treatment which is the only chance my child has of surviving! Of course, nothing would stop me! I would do anything, sacrifice anything, in order to give my precious child the best chance possible at life .
Cupcakes of Hope ( www.cupcakesofhope.org ) is a non-profit organisation which raises funds to help families of children who are battling cancer. For the first time this year (on Saturday 29 September 2012) Capetonians got the chance to get involved as well. This is my story:
Despite battling with my own ill health, I was moved to volunteer for this worthy cause. I’m not a good baker, but I am good at selling stuff, so I signed up to help turn all the gorgeous, scrumptious cupcakes (donated by others) into money for these families in need. The other “Cupcake Angels” set up our stand in the Canal Walk Shopping Centre at 8am so that they were ready to sell from 9am. My shift started at 2pm. Before I got there (bearing in mind that ALL the cupcakes were donated and they’d already been selling them for 5 hours) I expected to find a pretty empty table. I couldn’t have been more mistaken!
Four large trestle tables were laden with gorgeous cupcakes of every colour and flavour … and there were 3 shopping carts full of boxes of cupcakes which had not even been unpacked yet! The generosity & creativity of every single baker really exceeded my expectations. Business was brisk … yet, as soon as a spot opened up, one of the Cupcake Angels was ready to take up the space with yet another beautiful creation.
The absolute highlight of the day (for me) happened courtesy of a gorgeous blue-eyed, blond haired little boy. He was approximately 18 months old and was deliberately sucking on a pacifier, whilst comfortably ensconced in his mother’s arms. I spoke to his parents and explained to them that all the cupcakes were donated and we were all volunteers, so 100% of the money donated would go to help the families. His dad gave me some money and I just knew which of the hundreds of cupcakes would be just right for this little boy …. Cookie Monster! As soon as I showed it to him he smiled from ear to ear. Out popped the pacifier and he reached out for the cupcake. I still feel “warm & fuzzy” inside when I remember the twinkle in his eye and his delighted smile!
We kept turning cupcakes into cash until the last possible minute … and still had enough cupcakes left over to donate to the needy! The time just flew by. I’m really grateful to have had the opportunity to do my small part for this very worthy cause.
We have already raised nearly half a million rand without counting a couple of other sites and corporate sponsorships!