Finding motivation within a humble To-Do list

Since being diagnosed with RA and Fibro in February this year, life has proven to be challenging. While I would definitely refer to the last six months as a roller coaster ride, the lows have been incredibly low, and I would be lying if I said I hadn’t experience some depression as a result of learning to deal with these conditions, and everything that goes along with them. For me, being depressed presented itself in a few classic symptoms: lethargy, inability to find pleasure in the things that normally would make me happy, crying a lot, disturbed sleep. But the worst effect that depression had on me? A complete absence of motivation to do anything! Getting out of bed was a challenge. Showering felt too hard. I didn’t even have the mental stamina to read a chapter of a book. While this lack of motivation initially stemmed from avoiding activities due to pain, it continued to grow, and the lower my mood went, the less I wanted to do anything. It was awful, and I hated it – but couldn’t be bothered doing anything to change it.

In my previous post, I wrote about the joy I have found in hot yoga. But there is something else that has helped me begin to move forward in my life. Something seemingly small and insignificant… but which managed to light a little flicker of motivation within me. A humble To-Do list!

My very first list contained three items. 1) Have a shower. 2) Make some porridge. 3) Put a load of washing on. VERY basic. Keep in mind that at this time I could barely find the motivation or energy to get out of bed in the morning. So while these three items were all just every-day, easy tasks – tasks that the average person wouldn’t even think about – I put them on my list and told myself that if I just could do those three things, my day had been successful. After I had a shower, I got a pen, and put a big line through the first item on my list. I was amazed at how satisfying this was! After I made some porridge, I drew a line through the second item. Even more satisfying – and I only had one item to go. Once the load of washing had been put on, I had a completed list… and I felt the best I had felt in months. All from completing three basic tasks that I had written down, and crossing them off as I went.

Each day, I now wake up and write a to-do list of stuff I want to get done that day. The lists have now gone beyond basic tasks, and I am beginning to feel productive and worthwhile. I am kind to myself – some days I am exhausting and flaring, and I may not even get ¼ of my list crossed off. But I am setting goals, and being productive – and slowly but surely, my motivation is returning, and I am becoming excited about life again. And it all began with a humble list.

So if you are feeling low, and struggling to get going, give a to-do list a go! Start slow, and be kind to yourself. I’m pretty sure you will find it to be a definite step in the right direction. I have gone from feeling completely and utterly hopeless… to believing that I CAN and WILL have a fulfilling, wonderful life – and I won’t be held back by my chronic illnesses. One step – and one list – at a time, I will get there. And so will you.

Sending you all strength, love and peace.

Related articles

• Five ideas to boost sinking motivation (jeffhalloran.com)
• A Review of Techniques in Managing Depression (managingfear.wordpress.com)

My love affair with Hot Yoga

It was time to stop being a pussy!

About 5 weeks ago, I went along to a hot yoga class, after much cajoling and convincing from my brother’s girlfriend, who is a true hot yoga devotee. I must admit, I was rather apprehensive. A couple of years back I tried a few Bikram Yoga classes (90 minutes in a 40°C heated room), and not only did I feel light headed and horrible during the class, I would get a shocking migraine for a couple of days after, which rendered me completely bed-ridden. However, after learning that this class was less intense (60 minutes, in a 35°C heated room), as well as having infrared heating, which has been shown to help with the immune system, I thought I’d bite the bullet and give it a go. This was the first ‘proper’ exercise I had done since my diagnosis in February, other than hydrotherapy, which is more walking around in a hot pool with old folk… so I was scared.

But now, 5 weeks later, I am a true addict. The classes are literally turning my life around, one yoga pose at a time. Here are just a few of the benefits I am finding from regularly doing hot yoga:

Physically…

• I have cut down on my pain medication by more than half!!

• I am getting more movement and flexibility through joints that I previously could barely move.

• I am beginning to get my muscle tone back, and starting to regain my core strength, both of which were largely lost from several months of bed/couch rest.

• My energy levels have increased exponentially.

• I am falling asleep more quickly, and sleeping much better through the night.

• My skin is SO much better – after months of horrible acne from the combination of drugs I am on. Hot yoga seems to be helping me sweat out all the toxins and bad stuff in my skin. Hooray!

Mentally…

• I am learning to remain unattached to discomfort. In yoga, you learn to focus on your breath, and to remain unattached to feelings that may surface during your practice. When you are in a difficult pose, and your muscles are screaming, you learn to observe the sensation, rather than getting anxious about it, or attaching emotions to the discomfort. Learning to do this has already proven to be incredibly valuable – I use this method while dealing with bothday-to-day pains, and when I’m having a flare.

• I am getting out of the house! It is too easy to slip into staying into your PJ’s all day and feeling sorry for yourself when you suffer from a chronic illness. Prior to starting hot yoga, I was spiralling into depression. I would frequently cancel on people, as it just felt too hard. I would sit on the couch, watching episode after episode of whatever series I was watching, avoiding the real world. But now? I get my workout gear on, and head out into the world. Not only has yoga been good for my body, but it is great to interact with other people and be doing something productive.

Emotionally…

• My moods are much more level. I still cry sometimes, when my Fibro or RA is really bad, or when something happens which reminds me how much my life has changed – nobody is perfect. But overall I am a LOT more emotionally stable than I was before I started yoga.

• I am learning to love my body again. Since my diagnosis, I have felt very bitter at my immune system, and have berated my body for ‘failing me’. But every time I go to a class, and attempt to do a new pose, feeling my body getting stronger, I have more belief in myself and my body. Sometimes I am flaring a bit, and can’t do anything but lie there… but that’s okay. I’m there, I’m listening to my body, and I’m doing my best. And that is all that matters.

Hot yoga has had a bit of a snowball effect for me… Since starting it, I have gone for a couple of interviews for temporary work (committing to full-time, permanent work is not a possibility right now… hopefully soon), I have been studying again, and I am being much more social than I was. I guess when you start working on one aspect of your life, the other parts of your life tend to follow…

If you are suffering from RA or Fibro, I thoroughly recommend trying hot yoga. Of course, get the all-clear from your rheumy or GP first… But I cannot recommend it highly enough. 🙂

Don’t forget to seal your yoga practice with gratitude 😉

Steroid Hell and what it taught me

It has once again been a couple of weeks between posts. I have a pretty good excuse. I have just escaped the terrible hell-hole that is methylprednisolone infusion. It has seriously been one of the worst times of my life. The first day of the infusion, I felt like superwoman. All my swelling magically disappeared, and I felt like I could take on the world. This was awesome – until I didn’t catch a wink of sleep that night. By day two of  the infusion, I had a thumping headache and my legs ached like crazy. They kept me in hospital that night to monitor me, and took it upon themselves to pump me full of stuff to try help with the headache. That night I managed to catch about two collective hours of sleep. I also made several trips to the hospital vending machine in the middle of the night to buy a plethora of crappy food, which didn’t even make a dint in my ravenous appetite.

Steroids make me CRAZY!!

By the third and final day of the infusion, I felt delirious from the lack of sleep, nauseous from the combination of drugs, and wired from the high doses of steroids. My thoughts were racing, and after they released me, I drove like a maniac – speeding and dodging my way dangerously through traffic. I realised that I was being silly – but I didn’t care. It was how I would imagine the manic phase of bipolar disorder to be to a sufferer. I talked non-stop, ideas running thick and fast, careering into each other. I ate non-stop, shoving whatever food I could find into my mouth between my rambling sentences. It was crazy.

Then I discovered that the old adage ‘what goes up, must come down’ was unfortunately very true. After another night of barely sleeping, I physically and emotionally crashed. The nausea came on thick and fast… I could barely make it to the bathroom. I spent hours curled up on the floor, wrapped around the toilet, purging all the food I had eaten. I threw up so much I was worried I was going to have a heart attack. When I finally made it back to bed, I prayed for sleep, but could only lie there in misery. My muscles ached, all the way to the bone, and my head pounded. But the worst part of it was the emotional turmoil. All the manic thoughts fell away into a terrible, bleak depression, which was interspersed with outbursts of anger over nothing at all. Or maybe over everything. I felt like I was losing my mind. My boyfriend stayed home from work for two days to look after me – I was so unwell, physically and mentally, that I just couldn’t be alone. Once again, my darling other half earned his stripes – adding them to the vast collection he has already earned since my diagnosis in February. I do not know where I would be without him.

I’m happy to say – it passed. I survived. It’s now been two weeks since the final infusion day, and I am feeling far less crazy (no crazier than before I had the infusion anyway)! AND my joints still feel a million times better… I have managed to go for walks every day, and am even pulling off some yoga positions that I couldn’t do before. I know that steroids are only temporary, but I’m hoping that the MTX will kick in during this period of respite and take over. Time will tell.

The main lesson I have taken away from this horrible experience with the steroids is the importance of being in the driver’s seat of my treatment. I’m a huge advocate for writing lists of questions and concerns to take to my doctor’s appointments, just to make sure I don’t forget anything. However, when I went to see my rheumatologist most recently, in the midst of a very bad flare, I agreed to a steroid infusion without asking questions. I was just desperate to feel better, albeit temporarily. So I signed the form and went to hospital, having no idea about potential side-effects and the mental anguish that could potentially follow the procedure. While I feel that my specialist should have been more forthcoming about what could happen following the procedure, I have realised that it is my body – my health – and therefore my responsibility to obtain the information I need to make an informed decision about treatments I undertake, and medication that I put into my body. Because after all, I only get one body. And while mine is certainly proving to be far from perfect, I want to do what is best for it. Knowledge is power.

There’s no such thing as a stupid question!

Frustrating misconceptions

I am currently spending a couple of days in hospital, getting a methylprednisolone infusion to try and get my inflammation under control. The aim of this is to buy me some time until I can see if the MTX is going to work. I’m excited about the prospect of feeling better, albeit temporarily, which is already happening. I woke up without much pain at all this morning, which felt surreal. I can type without my fingers hurting, and I can actually walk up stairs without looking like a wooden-legged pirate!

However, something upsetting, but unfortunately not unusual, happened this morning. I had moved to a different hospital room, and a nurse bustled in with a gown and cap for surgery, telling me to go and put it on. Confused, I explained to her that I wasn’t having surgery – I was having an infusion. Equally confused, she told me she had assumed I was having surgery as I was “too young for an infusion”.  She smiled at me with sympathy and walked out. I felt a combination of sadness and annoyance, interspersed with disbelief that someone in the health profession would be that ignorant.

Which leads me to the world of frustrating misconceptions regarding RA and Fibro. I have experienced many of these since my diagnosis in February, and as much as I try to let them be “water off a duck’s back” – they still drive me nuts! Here are the top four doozies:

1)   “You’re too young to have arthritis!”

Actually, RA is a disease that affects people of all ages, and can even be diagnosed in young children (juvenile RA). Most people make this comment when they find out I have RA. Grrr!

 2)   “Oh, I have arthritis too! I had a reoccurring injury in my ankle from netball and now it’s full of arthritis – it’s SO annoying isn’t it!”

I have to hold myself back from rolling my eyes at people who say thing kind of thing to me!

3)   “But you look completely normal, not sick at all!”

This is one of the most frustrating ones… the fact that RA and Fibro are often something you can’t see on the outside, but you can darn well feel them on the inside! The extreme fatigue, joint pain and general malaise are all part of RA, but as they can’t be seen, they are assumed to not be that bad. Some people think you are exaggerating, and should just take a panadol and get on with things. Ha!

 4)   “Medication for RA is toxic – I would avoid taking it for now and just watch your diet/move to warm climate. That should sort it out”.

It is actually extremely important to get on top of RA as early as possible, to avoid joint damage and slow the progression of the disease. Unfortunately, a warm climate or a gluten free/dairy free/meat free/whatever-else-free diet is not going to cure RA.

5)   “Fibromyalgia isn’t real. It’s just in your head”.

Fibro is seriously debilitating. Some of the Fibro flares I have had have had me screaming in pain and unable to move for 2 days. Furthermore, new research has found that Fibro is not in the brain, and rather is to do with extra blood vessels! This is a great article to read.

I’m sure that misunderstandings are something that many people with chronic diseases come across in their dealings with the wider community. Prior to being diagnosed myself, I had very little knowledge about RA, and had never even HEARD of Fibro before. But now that I am battling both of these conditions, it is hard to not find people’s misinformation and misunderstanding frustrating, and at times, completely upsetting. I hope to somehow use my experience with RA and Fibro to not only help others that are fighting the same battles, but to also educate people that are blessed to have a clean bill of health.

But in the meantime,  I will keep working on being that duck. And letting people’s misconceptions slide right off my back. 🙂

Related articles

• 5 Myths About Fibromyalgia (flourishwithfibro.wordpress.com)
• Rheumatoid Arthritis Awareness Week (30somethingwitharthritis.wordpress.com)
• Myths, Assumptions, Realities, and Confustion Surrounding Fibro (eullrich11.wordpress.com)

Coming clean

It has been a couple of weeks since posting, and to be honest, I was putting it off. After my last very positive post, which declared my refusal to take Methotrexate, and my decision to embark on a ‘healing challenge’, I must come clean and tell you that I did begin taking Methotrexate after all. I feel very guilty about sharing this with you. Like I have lied to you all. Perhaps lied to myself. But in reality, I am just desperate to get my life back as it was prior to this very swift onset of RA. However I can.

Why did I start on the Methotrexate? In a nutshell – I am very afraid of permanent joint damage and need to modify the course of this disease, and quickly. The longer version: I had completely intended to comply with the conditions I set out in my Healing Challenge. I bought a slow cooker. I downloaded a meditation app. I started attending yoga/meditation classes (in which I’m sure I look hilarious as I cannot do at least half of the positions… but it’s good to get out there and try!). But I kept getting worse. RA can come on very slowly and subtly, over many years. Or it can bowl you over with ferocity, rendering you half-crippled in a matter of weeks. Unfortunately, in my case it has been the latter.

So I was eating warm, comforting foods. Doing meditation. Being positive. And in fact, I am still doing all those things. But my joints were swelling bigger and bigger, and my movement was more and more limited. I spoke to my rheumatologist, who told me that by not getting the RA under control as soon as possible, I am seriously risking long term joint damage and disability. And in my heart of hearts, I felt he was right. While I am scared of the toxicity of Methotrexate, there’s no denying it is a disease modifying drug (DMARDS)… and my disease needs to be modified, and quickly. So that night I started taking the it. I’ve taken it once a week for a couple of weeks … and while it’s no picnic, I cannot stand by and witness my body falling apart as quickly as it has been. No matter how much I meditate, or what positive affirmations I say to myself in the mirror –  I am absolutely terrified and need to feel some control over what is happening.

I truly hope that nobody reading this feels let down by my ‘giving in’ to harsher drugs. I had planned to be a shining example of the wonders of natural healing… and I am disappointed I cannot be at this time.  However, I am still embarking on a holistic approach. I am clumsily attempting hot yoga a few times a week. I am meditating daily, and eating warming foods. I am not drinking alcohol at all anymore, and staying away from any other medication as much as I can. And I am trying to feel confident that I WILL find the right balance for me, to get my body functioning well enough to lead a more active and involved life, that is not overrun by a body that is deteriorating in front of my eyes. Watch this space.

A picture of me attempting yoga 😉

Related articles

• Remission Through Early and Aggressive RA Treatment (theadventuresofarthritisnfibromyalgia.wordpress.com)

My Healing Challenge

Yesterday I went to see a wonderful doctor. She came strongly recommended by a good friend of mine. This doctor is not just an ordinary doctor. She has worked in China, and is not only trained in Western medicine, but specializes in Chinese medicine and acupuncture. She spent close to two hours with me, going through my history, and told me that I have a lot of fear and anxiety coursing through my body. Given my history of illness, heavy antibiotic use, at times quite significant binge drinking and recreational drug use (I had a colourful time in my late teens, OK!!), that these issues with my health have been a long time coming, and that half the battle is going to be learning to calm my mind, and turn my negative thought processes into positive ones.

Now, a little while ago I wrote a blog about being wary of people that say they can cure RA. And the importance of listening to your rheumatologist, first and foremost. While I am not discounting this, I have had great misgivings about taking Methotrexate. I understand that it has great success at slowing the progress of RA. But the potential side effects and risks associated with this drug terrify me. I have put off taking it for a couple of weeks, it has freaked me out so much. I am desperate to get better, but some part of me is telling me that this is perhaps not the best way to go about it. That there MUST be something else I can do.

The doctor I saw yesterday thinks there is (from now on, I shall refer to her as Dr. Zen, just to make things easier). Dr. Zen told me that my body is in a lot of inflammation at the moment (thank you, Captain Obvious!), but that it has taken time to become that way – it has likely happened over many years – so therefore, it will take time to heal. She has asked that I give her method a good try for six weeks before getting on the Methotrexate… and although my rheumatologist would likely disagree with this, I am going to give it a shot. I will update my progress regularly on here, kind of using this section of my blog like a diary (that you guys can all read, if you so wish!).

This is my plan thus far, as per Dr. Zen’s instructions:

1)   Stay warm! Rug up at all times – gloves, beanies, scarves, layers. Don’t let my body get cold.

2)   Eat only ‘warming’ foods that are easy to digest. Soups, slow cook casseroles, stews, cooked fruit, porridge, herbal tea.

3)   Take the strain OFF my liver. Dr. Zen seems to think that a lot of my problems stem from my liver, which is interesting, given that I was in hospital last year for a couple of weeks, due to my liver not functioning properly. This means no alcohol, minimal drugs (I will stick to my Plaquenil and Cymbalta for now, but try to minimize sleeping tablets and pain killers).

4)   Practise positive thinking. Stop freaking out when a joint is swollen, or my hand looks deformed. Tell myself that everything will be okay, BELIEVE that it will be. Don’t use the words pain, crippled, disabled. Throw everything I can at this in my quest for positivity. Affirmations. Vision boards. Whatever works. I need to believe in the power of my body to heal itself.

5)   Meditate daily. This will be challenging for me as I find it very hard to just lie there not doing anything – which I guess makes it even more important!

6)   Get acupuncture once a week.

And that is basically my plan. While my doctor and rheumy seem keen to get me on Methotrexate, my gut is telling me to give this a shot first. I will try and update daily so I can keep a track of how this is going. Wish me luck!

Trying to find my zen – has anybody seen it?! I know it’s in me somewhere!

Feeling shitty

I had my 30^th birthday party on Saturday night. It was at a function room I hired, and there was balloons, and cake, and about 60 guests. I found the whole experience rather stressful. Firstly I was worried that no one would come. Then there was the fear that I would have a flare beforehand and have to cancel last minute. When I managed to get there minus any serious flare, and people DID come, I was rushing around trying to speak to everyone and make sure everyone was happy.  I got tired and sore pretty quickly, and then stressed about how it would look to leave before other people attending left. When I finally pulled the pin, I got a few incredulous comments. “You’re leaving your own party?!” etc etc. This made me sad. A little bit frustrated – but mostly sad.

As much as I try to make this blog upbeat, and try to adopt a positive attitude when it comes to dealing with the curveballs life has thrown at me, sometimes I just feel shitty. I’m shitty that although people know that I have rheumatoid arthritis, they don’t really understand. How could they? On the outside, I look the same (except for the swollen joints which I try to keep hidden). When I’m really bad and on crutches, or my hand is bandaged to keep my fingers still, then people take it a bit more seriously. But primarily, it is an invisible disease. Those who haven’t dealt with something like RA or Fibromyalgia first hand couldn’t possibly understand the overwhelming fatigue, or the excruciating pain of a flare. The fear that tries to overtake me every time I feel the little pangs of pain begin in a joint and I know that a flare is coming. The nervousness I feel when making plans with someone, or there’s something I’m looking forward to – because I know I might not be making it. I have written previous blogs about not being fearful, and the futility of worry – but it’s still something I battle with.

I’m shitty that I couldn’t stay longer at my own party. And that I couldn’t have more than a couple of drinks before I felt sick, and risked causing myself serious liver damage because of the medication I am on. I’m  shitty that it’s two days later, and I am absolutely exhausted, lying in bed, on a beautiful day – while no doubt those people that partied on past me on Saturday night are out and about enjoying it. I’m shitty that my bedside drawer is filled with drugs, many of which I take at least daily – and that I have to add Methotrexate to the mix this week, as well as doubling my Cymbalta dose.

My blog is about finding peace, passion and purpose in a life with chronic pain. It remains my ongoing quest – and I still see the beauty in life. But today, I just feel shitty, and I wish that things were different, and that people understood more. Will I ever have these desires removed from my mind, and be able to be completely at peace with the cards life has dealt me? I just don’t know.

Knowing what makes you valuable

Being diagnosed with a chronic disease is shattering. Any sense of being invincible is blown away in an instant, and all of a sudden the future seems more uncertain. Truth be told, the future is uncertain for each and every one of us on this planet – anybody could die tomorrow. But receiving a diagnosis of a disease such as Rheumatoid Arthritis, of which the prognosis is unknown, and can be different for every person, really brings life’s uncertainty and fragility into one’s awareness.

Prior to being diagnosed, I was incredibly absorbed with how I looked, and what I had. My partner and I had spent the best part of a year looking for a house to buy. I had achieved a degree and was in the process of beginning my masters, keen to get another academic accreditation under my belt. I was searching for a new, glamorous job that would pay me the big bucks. I was incredibly vain: I would critique myself in any reflective surface I came across. I would lament the fine lines that only I could see, the way my legs weren’t as perfect as those that I saw in magazines. I would watch Victoria’s Secret parades on TV and swear off carbs forever, vowing to workout twice as hard at the gym, to try to look thinner/leaner/sexier. My confidence and self-esteem was contingent on the compliments and attention I got from others for my looks, possessions and achievements.

The moment that I got diagnosed, everything changed. I declined so quickly that I couldn’t work anymore, and I had to pull out of my masters. I barely had the energy to even look in a mirror, and when I did, I saw swollen joints and acne that had erupted as a result of the various medications I was taking.  The body I had worked so hard on was suddenly rendered crippled – there were days I couldn’t walk, lift my arms, or use my hands. My muscles slowly wasted away. Since I have been diagnosed, it has been an effort to walk up a staircase without looking like I have one, or two, wooden legs, depending on the day. Everything that I thought made me special, and worthwhile, was taken away from me.

I often refer to my diagnosis as being bittersweet. Bitter for obvious reasons – I will have to deal with this disease, and the complications and challenges it presents, for the rest of my life.  But why sweet? Because it has taught me about what REALLY makes me special. I am not my job. Or the number of university qualifications I have next to my name. I am not my body, or my face, or how physically attractive I am. I am not the suburb I live in, or the amount of money I have in my account. None of these things are what make me (or you!) valuable.

What makes a person valuable is what they have in their heart. Their integrity. Their kindness.  Their ability to see beauty. The love that they have to give. Their sense of humour. The quiet respect they have for themselves and for others. The worth that a human being has is independent of social value, and external stuff such as money, looks, performance and achievement. Whilst we place so much importance on having ‘stuff’, and doing ‘stuff’, and looking a certain way, it is not what is important. The worth that you have is inside of you, and no matter what curveballs life throws at you, nothing can take that away.

Realising this has been absolutely huge for me. Not matter what areas of my life my disease impacts upon, or how much I am physically affected, my true value, and self-worth, will never change. Realising this makes me love myself more than I ever have before. And for that, I feel truly blessed.

Sending you all strength, love and peace.

Learning To Keep An Even Keel

Last week I found out I was a finalist in a competition that I had entered. Run by a fashion magazine, I had been chosen to be one of fifty girls to be given a few hundred dollars and let loose for 45 minutes in a big shopping mall. In that 45 minutes, I had to buy and dress myself in the best, most fashion-forward, stylish outfit I could find, and be ready at the catwalk they had set up, to strut my stuff, and be judged for my fashion prowess. There was the potential to win $5000, and no matter what, we got to keep the outfit! When I got this phone call, I got incredibly excited!!

Despite the positivity I try to encompass, life has gotten me down a bit lately. My rheumy told me that I will need to get onto more drugs, which I am terrified about; I am getting sick of looking at the swollen knuckles in my hand and feeling pain every time I take a step; and not working is driving me crazy, although I am still not consistently well enough to commit to a job. A competition like this probably isn’t a huge deal to most people, but I was overwhelmed with excitement.

I immediately called some of my fashion-savvy friends and asked what was in trend at the moment (I have been living in sweatpants for three months  so have no idea!), I scoured fashion magazines and the internet to see what was in. The day before the competition, I went to the shopping mall and looked around for hours, to try and work out what I would buy. I figured that I wouldn’t be able to run around or dress as quickly as the other girls, so wanted to be organized! As I looked around, I tried to factor in that the shoes couldn’t be too high (my poor feet just wouldn’t be able to get in there), and I would need pants or at least stockings rather than bare legs, as my knee is perpetually swollen these days.  I chatted to sales girls and tried things on, feeling this sense of nervousness and excitement bubbling inside of me the whole time.

I was so full of excitement that I kind of ignored when my left shoulder started hurting as I pulled dresses on and off in the change rooms. It got more and more insistent, but I still tried to ignore it. This was MY time damn it – I needed to be prepared for this competition tomorrow! As I tried to pull a top over my head in a change room, my shoulder and neck screamed at me so much I gasped, and I could not lift my arm anymore. Absolutely mortified, I had to ask the perky sales girl to come and help me get it off, and to get my t-shirt back on. She was really nice about it, but it was all I could do not to start bawling my eyes out. I had instantly gone from savvy, bubbly competition-winner with stars in her eyes to disability victim. Perhaps this is a bit dramatic but it’s how I felt.

I somehow managed to drive home, got inside and into bed, with a heat pack on my shoulder. The pain was excruciating now, deep within my shoulder, collar bone, neck and jaw – I was literally hyperventilating, the pain was just too much. I sobbed that night, begging my boyfriend to take me to hospital. He didn’t – not because he is an awful person – but because last time this happened, we DID go to emergency, and I got pumped full of morphine and other drugs, none of which helped. They just made me sick to my stomach for days. So there really isn’t much point. I cried to him, asking how I would make the competition the next day?! He stroked my hair and said that I might not be able to, and if I couldnt, that there would be other competitions, and it wasn’t the end of the world. I think he knew that there was no way I’d get there, but he is too much of a sweetheart to serve me that truth while I was so upset.

I barely slept that night, the pain was so bad, and the next day I was a zombie, still barely able to move. I got driven to my masseuse, who is an absolutely wonderful man. He worked on me for nearly two hours – my muscles were in knots all over my shoulders and neck – he could barely touch them at first. It was the worst Fibro flare I have ever had. He asked what had been going on when it happened, and I said that I had been in a happy place – I was excited for a competition! As I explained the situation, and when it had come on, he told me that excitement in the body is pretty much the same as stress. The heart speeds up, your blood pumps faster, you move quicker, there is so much more activity happening – and your chance of a flare increases.

As I thought of how I had been racing from shop to shop, whipping clothes on and off, full of adrenaline, I knew he was right. While I have always understood the importance of keeping stress to a minimum, I had never considered that this would include not allowing myself to get too excited – even if I DID consider it a positive emotion. It seems that every time I get really worked up, be it with anger, sadness, fear, excitement – I flare up. It’s definitely a breakthrough to figure out these triggers… but given that I am a very excitable person, who ‘feels’ things more than the average person, the process of learning to keep myself on an ‘even keel’ doesn’t seem to be a simple one.

I didn’t get to the competition. I was very sad, and very angry at my body for letting me down – but then I remembered that allowing myself to get so worked up was only going to work against me! So I took a deep breath, and tried to let it go. It’s been four days since the flare started, and I’m only just beginning to be able to use my arm again, and move my head around. Pain like this will without a doubt teach me to be more moderate, and to pace myself. To take everything in my stride, and keep myself steady.  As much as having chronic disease can be awful, the lessons I am learning may have never been presented to me without it. And I must give thanks for that.

A Step-By-Step Guide to Accepting Pain

It has been quite a few days between posts. I had every intention of following up my recent post with something more detailed within a couple of days – but life got in the way.  I have had a couple of pretty shitty flares, a puppy who is refusing to be toilet trained (and a carpet that looks more revolting every day as a result!), and a plethora of 30th birthdays. Including my own which is coming up in a couple of weeks. I’ll save my thoughts on that for another post!

Today I wanted to run you through the process of using Acceptance and Commitment Therapy to accept pain and unpleasant emotions. As I said in my earlier post, practice makes perfect. The idea of trying to accept pain that is consistent and intense, or emotions that completely engulf you, may sound ludicrous at first. Remember, accepting something doesn’t necessarily mean that you have to LIKE it. It’s just finding peace with it, and letting it be.

So, here is a step-by-step process of practicing the acceptance of pain and unpleasant emotions:

1) When you are feeling pain, or an unpleasant emotion, take a few big, slow, deep breaths and scan your entire body, from head to toe. This body scan will likely reveal several uncomfortable (or downright bloody painful!) sensations. Find the strongest sensation – the one that is bothering you the most. Perhaps it is a deep, stabbing pain in your leg muscles, or a twisting in your stomach, or an ache in certain joints.

Observe your pain like a friendly scientist, discovering a new phenomenon

2) Focus all your attention on that sensation. Observe it with curiosity, like a friendly scientist, discovering a new phenomenon. As you are observing it carefully, notice where it starts and where it ends. If you had to draw a line around the sensation, what would the outline look like? How far inside of you does it go? Where is the sensation most intense? Where is it weakest? Is it different in the centre than it is in the edges? Is there any type of pulsation or vibration within it? Is it still or moving? Light or heavy? Hot or cold? As an example, when I am flaring in my knees, I often imagine it like a red colour. It is boiling hot, with sharp jagged edges and lots of spikes. It pulsates into my knee and surrounding tissue, flickering up and down my leg like fire from time to time.

3) Take a few more deep breaths, and stop struggling with that sensation. Imagine your breath flowing in and around it – breathe into it. Make room for it. Allow it to be there. This doesn’t mean you have to want it, or like it. Just let it be.

4) All you are trying to do is observe the sensation – not to think about it. When your mind starts commenting on what is happening, just say “Thanks mind!” and go back to observing. You might find this very difficult. You might want to fight with it or push it away. If so, just acknowledge this urge, without giving in to it. After you acknowledge it, bring your attention back to the sensation.

5) Do not try to change the sensation, or alter it in any way. If it changes on its own, that’s okay. If it doesn’t change, that is okay too. Changing or getting rid of it is not the goal.

6) You may need to focus on this sensation for a few seconds, or a few minutes – as long as it takes to completely give up the struggle with it. Be patient and take as long as you need.

7) Once you have done this, scan your body again, and see if there is another strong sensation that is bothering you. If so, repeat the procedure with that one. Sometimes, when I am having a bad flare, I go through a multitude of body scans as I feel pain in so many different body parts! You can do this with as many different sensations as you want to – keep going until you have a sense of no longer struggling with your pain and/or unpleasant emotions.

As you do this exercise, one of two things will happen. Either your pain levels and feelings will change – or they won’t. Either way, it doesn’t matter. This exercise is not about changing your pain and feelings – it is about accepting them. And once you can learn to do that, life gets a whole lot easier. I promise. 😀

Just let it be

Related articles

• Using ACT for Pain Management (abeautifulpain.com)
• How to Deal with the Emotional Ramifications of Chronic Pain (tearlines.wordpress.com)
• Core Principles of Acceptance & Commitment Training (ACT) (psychologytoday.com)