Thursday, July 6, 2017

The Power of Personal Mantras

It has been said that a personal mantra can have many benefits. It could help us regain lost confidence and soothe anxiety. My newfound mantra helps me regain my focus on more positive things when my mind is in a funk. It is key to moderating the highly emotional responses that I tend to lean towards.

I've been in therapy for a long time. The idea of a personal mantra is not new to me. Therapists have often touted their benefits. I've mostly brushed the idea of them off until now. They were either a waste of time or not going to work on someone as damaged as me.

I've come to realize that everyone is damaged in their own way, that needing help is not weakness. It is, in fact, a huge strength. I've also realized that my mantras are not a waste of time. It's the exact opposite. It is a key in keeping me from becoming a melting puddle of stress. It often gets me back to a productive state of mind. So, mantras equal time saver! That's the first thing therapists should push when they're selling the mantra concept.

In what specific situations have I needed to use my mantras? What exact words are they?  Mantras work through repetition. During anxiety attacks I repeat the words “I'm ok” until I believe it. I follow that mantra with thoughts of specific situations that have made me happy. Sometimes I talk about them out loud. It can be something as simple as an unsolicited text from a friend.

If I'm angry, my mantra is “You are capable of calm.” It often saves me from completely flipping out on people. It also helps me in other extreme emotions. The hardest part is getting me to believe them, but I'm getting better.

I'm creating new mantras and using my standby ones almost every day. I can't believe it's taken me this long to see the powers they offer. They calm me down, pep me up, and give me hope when I'm down. What a powerful tool!

Sunday, June 18, 2017

How to not lose yourself to chronic pain?

They say that only when you lose something, do you realize the value of it.

Did ever miss someone  knowing that it is impossible for you to meet again? Did you ever feel that loss? The damage that it does to you?
They say the pain never goes away, you just get used to it and try to continue living.

What about missing YOURSELF? Missing who you used to be knowing that it is impossible to be that person again? How can you cope with that loss? Can you cope with that loss?
You go through your pictures trying to remember what it felt in that exact you felt..
You are somewhere and look at some people do the things that you did knowing deep down you cannot do them again.
You smelling some things that take you back to moments you would give everything to live again.
You watch people living their lives around you feeling like they live your life and you are just watching them on TV.
You live but you don't feel alive, you try to keep up with everything, you go to happy events but you don't feel anything, you go through it day by day, month by month, season by season.. never does it change, you are not you never will you be again. 
It is the hardest feeling..the hardest thing is to accept that.
BUT.. you are still you,a part of you has gone and forever, yes it is true meanwhile a lot of other things still there, yes they changed, yes they are different.. Actually, it is YOU that is different and you have to figure out what the person you are right now can and cannot do, what is okay to do and still makes us happy.. it is the biggest step.
Only then, you can start to feel alive again, in a different way, doing different things and somehow feel that HAPPINESS you miss so much.
We have to try our best not to let the negativity overwhelm us,to live our lives despite all the anxiety, the depression, the body dismorphic disorders, the OCDs etc that go with the disease, the pain because not only we have to deal with the illnesses but also what goes with it, all the mental breakdowns..
We gotta be STRONG and confident, we have to own back our MIND AND BODY to feel alive and enjoy life as much as possible, we deserve it.

Friday, June 16, 2017

Why writing is my therapy

Ever since I first learned to write, I loved doing it. My best friend and I wrote stories based on our favorite Baby-Sitters Club characters, and by fourth grade, my teachers were regularly praising my work. Sure, I enjoyed the compliments…what kid wouldn’t? But at the same time, it didn’t really feel like I deserved it. Writing was just something I did, almost effortlessly. It didn’t seem fair to take any credit for that, especially when putting words to paper made me so happy.

Fast forward decades later. Writing still brings me that same joy, even during times when little else seems to. Throughout all the changing pop culture fads and personal preferences of life, my love of writing has remained consistent.

After being diagnosed with lupus and polymyositis at age 21, there were countless things I could no longer do. I was never the most athletic person around, but I did enjoy going rollerblading in the park with my best friend or tubing down the river each summer. Suddenly these simple things I had once done without much thought either caused too much pain or were downright impossible, thanks to the loss of muscle in my legs. Even going anywhere with more than two or three stairs was off the list. The modern world prides itself on being inclusive, having made adaptations for those with physical limitations – and it certainly has, in comparison to decades past. But unfortunately, once you’re actually living with the need for those adaptations, you realize how painfully lacking they truly are. Not every place has an entrance ramp or an elevator; the ones that do may be far from where you actually need to be, causing you further pain and exhaustion with the additional walk.

Yet despite small hurdles – days when it hurt my hand to grip a pen or when arthritis distorted my hands from the usual typing stance – I could still write. The essence of what made me be me still remained…and that was immensely comforting. Studies have indicated that art therapy is often used as a means of dealing with chronic pain. For me, the art medium of choice may be writing, but the effects are still the same. It’s a means of distraction, a way of diverting some of the focus from what ails you, and of staying active in a world that has suddenly become much more limited.  

Over the past 16 years, my writing has evolved into a great deal of advocacy. I freelance on a myriad of health-related  topics, including rare disease, chronic pain, and of course lupus and myositis. I like to think that by putting my own experiences out into the world, they may be beneficial to someone else going through the same thing. If my struggles are beneficial to another person even tangentially, then it makes me feel as if my problems weren’t entirely in vain.

Tuesday, June 6, 2017


Life is full of changes. Personally, I have always hated change, especially, those you can't control. Developing a pain condition is such a change. It's not something anyone would want nor is it something you can control. Inevitably pain changes a person. It alters their perception of life. It can also alter their personality too. It can take a bubbly, outgoing person to someone anxiously hoping their meds will kick in sometime... It can also make people much more compassionate.

Chronic pain sufferers know exactly what it's like to be in pain, to be questioned and disbelieved by those meant to help. More often than not, they will be reluctant to judge people. After all, they're continually judged. "You don't look sick," just being one example of how chronic pain sufferers such as myself are judged based on how they look.

The spoonies I'm lucky enough to call my friends are incredibly loving. I would like to believe that since developing Fibro, I've become more loving to those around me and the strangers I meet.  I could be grumpy and take out my frustration out on those individuals yet why should I? After all, it's not their fault I'm in pain. By letting myself grow as a person and continue to love as before, I'm not letting the pain win. Fundamentally, I'm still the exact same person I ever was. I'm just a little altered. I may not have expected my life to change by developing a pain condition but I can control how I react to that change. It's not always easy. Sometimes I want to be grumpy, I want to take my pain and frustration out on someone else. I don't, of course. Those around me care and despite how bad I'm feeling, I always end up being reminded of the importance of loving them. I need them and hopefully, they need me too.

Pain may change you but it doesn't need to change you for the bad. No matter what happens and how you feel, you will still be you. You'll just know how strong you are...

Monday, May 29, 2017

I'm still me..

When I first got diagnosed with Fibromyalgia at 17, I knew little of just how majorly my life would change. After all, the rheumatologist before me had assured me that all my dreams and aspirations were still possible. I could become anything I wished to be, despite my new diagnosis. I left her office confused. Glad that my months of mysterious pain hadn't been swept under the rug but also scared too. I'd wanted answers. I wanted to know why my relatively young body was protesting to the simplest of tasks. Looking back, Fibro was just not the answer I wanted. What 17 year old wants to be diagnosed with a chronic illness? At the time, I didn't know that my fellow spoonies would become my lifeline. That their courage and perseverance would both inspire me and keep my dreams somewhat alive.

I'm now 21 and for the most part, I'm often isolated away from society. Whilst being a rather friendly and rather vivacious person, the prospect of socialising is often exhausting. The idea of changing out of my PJ's and putting on a dress and attempting to look 'healthy' is just too daunting to complete most of the time. So, I take refuge in my room. My phone and my laptop constantly on. Not because I'm obsessed with technology, like most people my age but for a completely different reason altogether. They keep me connected with my spoonie family as I call them.

They're individuals  I have met through various help groups and who I would be lost without. Unlike people my own age, they know I'm not being lazy. They understand exactly what I'm going through and the trials I face each day. I'm so incredibly thankful they're apart of my life. I'm sure you're wondering why.... Without them, I'd wonder where is my place in society. They leave me in little doubt they care about me and that I'm welcome to message them. I always know that if I need them they will be there. With fibro, your support network is so important to you. It can lift you on bad days and remind you just how important it is to not give up.

I haven't given up. I'm still me. There may be times when I wonder how I'm going to face the day but with the help of those around me, I always manage it. I have never liked admitting to needing help. After all, I've always been stubborn Samantha and I wasn't going to let Fibromyalgia change that. I've only just realised that asking for help is not a weakness. When someone asks if they can help me, I know it's simply because they care. They are not seeing me as weak. Sometimes it's necessary for my own wellbeing to admit I need assistance.

It's not letting Fibro change my stubborn nature. I'm choosing to let those closest to me in. I'm choosing to admit when I struggle. That way I'm not isolated or alone. It's a reminder that I'm loved and cared for and that helps so much.

The next time you're in pain, I entreat you to remember these things. 1) You are loved. No amount of pain will change that. 2) There will always be someone who can be there for you. Don't suffer in silence. 3) Look after yourself.  We often feel guilty for being in pain. Try not to. Take that shower or bath you want. Put on your favourite film. Have a 'me' day, if you  can. You deserve pampering.

Tuesday, May 23, 2017

How I didn't let a new symptom take over my life.

It has been a few months now, I started to have one eye seeing double and blurry, it is such a great challenge everyday because I have to still continue living my life, trying to work etc not knowing what it is and trying to addapt to this new vision.
I won’t lie, it was a very hard time in my life if not THE hardest time but I feel better now, not that my vision got clear again but I got used to it, and after all do I have another choice ?
So,  I stood up for myself and went out of my comfort zone, once again I didn’t let my condition rule my life and cut it short. I feel empowered right now, but I admit I do feel very sad from time to time and I don’t undestand how it works and if i twill get worse with time, honestly I think yes because I feel the difference with time. I know I have to prepare myself for every possible situation at any time.

What I would like to say is, it is indeed very hard... Not only on the body, but also on the mind, it gets on my nerves sometimes and then I am frustrated and anxious.. but I work on myself and try to be stronger each and everytime, it is a constant battle and I don’t feel like myself most of the time, but I do continue to fight and try to keep the most of what I can keep..most importantly my free soul..

Friday, April 28, 2017

Positivity in Paris

I've been off work for almost a year. I have fibromyalgia and hypermobility and I managed to sprain my coccyx and the pain would put me in bed for days at a time. 

Back in November, after over 2 months off, I made the decision to travel with my other half to visit friends in Edinburgh. I was terrified, I won't lie to you. My fears were that I wouldn't be able to sit for long enough to take the train, that I'd struggle to move my baggage without causing days of inactivity. That a flare up would stop not just my fun but the fun of the people I was visiting and my wonderful boyfriend who's lifelong friend we were visiting. I feared that the spare bed we were offered wouldn't be a nice firm mattress and I would wake up with all over joint pain. 

Even the day before I was weighing up my options. The conclusion that eventually came to was that for many years I have worked all week and rested all weekend to manage my pain. I would never have booked a trip away over a weekend, or dared to take a risk in case it caused me time off work so this was my chance to see some of the world! 

The train was painful so I got up and walked around. My bag was heavy, and though my boyfriend helped, even getting from the train to the taxi with my hand luggage seemed a strain.

We walked through Edinburgh enjoying the tour and we walked and we walked. My Fitbit buzzed before too long marking 10,000 steps. It hurt but if I'm honest, it hurts anyway so at least this was worthwhile! 

When we returned to the flat...a futon. Firm mattress' are one thing but futons scared me. Ah well! No choice! 

I woke up feeling ok and we walked and walked and walked some more...

My fears could have prevented all this and encouraged me to stay in the warmth of my cosy home where there is no need to walk far or carry much but after the weekend my back and my joints felt terrific! If I'd been at the gym. I'd have stopped when it hurt. But miles from home and having to continue, it was only walking but it felt like a marathon and it was the best thing I could have done.

Fast forward 6 months and I have done another adventure. I've resigned my job and dipped into my savings and travelled to Paris with my partner and a team of athletes. He's part of a team and there was a competition.

Again, I was scared, I can't keep up, I'll be in pain, it will be too hard. Once again though, I had very little to lose, except the experience of being in Paris! I knew whatever happened there would always be taxis and a hotel room. 

The first few days I took it easy and eased myself into it, when the group travelled to Paris one afternoon I knew my legs wouldn't step up to the challenge so half way to the station I turned back. Another sunny day I went with them and was tired and in pain the whole time but I saw so many things and the pain couldn't ruin it, despite it trying so hard. 

As the week went on and I walked more and more the pain increased. I was hopping from one bench to the next and trying to keep up with a bunch of athletes. So many times I thought "this was an error, I shouldn't have come." But I battled on and my reward... I managed to do a days extra walking than one of the athletes and felt very pleased with myself. I was also proposed to in the most romantic city in the world. 

I have returned home with a fresh spring in my step. Sure, the pain is debilitating and it's hard work, at home it's hard to sort the washing some days, why suffer for such a small reward? But I am more motivated than ever to get back to work and save for my next trip. What is the pain for if it's not to feel proud and strong and brave and to accomplish things you fear you're not capable of?

Positivity is what did it, and not listening to that voice in my head that says "you can't, you shouldn't, it's too hard". You can and you should and if it's hard you just get to win a tough battle!

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