When grief surprises you by popping up

It’s certainly been awhile since my last post.  I wasn’t sure whether to write this, as it is in stark contrast to my last post, which was incredibly positive – I was riding high on the news that my RA had gone into remission. I didn’t want to admit that my bubble had somewhat burst. But, as they say, what goes up must come down.

I guess that going into ‘remission’ was the potential light at the end of the tunnel for me, and was what was getting me through a very sick 2013. When my rheumy finally told me that I had indeed achieved remission, the angels sang, the clouds parted, I saw the light etc. etc. etc.

However, as much as I hate to share this, life hasn’t been completely peachy since I reached remission.  I am still tired. A lot. And by tired I mean so fatigued I could just lie down on the floor wherever I am and go to sleep. Even in the supermarket. My body has actually even collapsed on me a couple of times, I’m so tired. And I hurt. While it’s nowhere near the debilitating pain I had during my RA and fibro flares last year, I still ache a lot of the time. And every time a joint has a little twinge of pain, I immediately start worrying that the RA is becoming active again. This anxiety makes me notice every pain even more, and no doubt makes me even more fatigued.

I am trying to keep up with my daily meditations, my healthy eating (it’s far from perfect but I’m still downing a huge green smoothie most days!), my positive thinking. But the fear of getting worse is always in the back of my mind. How to shake that fear… I’m not sure. I thought I was over the ‘grief’ stage of my disease. And perhaps I was. But then I reached the holy grail of remission, and had thought that everything would just go back to normal. I would feel completely fantastic again. My disease would be completely gone… but it’s not.

I’m still on a lot of drugs that I will be on for a lifetime, which cause their own host of problems.  I will still deal with tiredness and pain at times. I will still have to go see my specialists regularly, and be extra careful in monitoring my physical and mental health. And I will still battle with the sadness and anxiety that appears from time to time, that seems to be part of having RA.

I will never stop trying to be the best person that I can be. Nor will I ever stop trying to take some positive lessons from this experience, which is why I started this blog in the first place. I want to really grasp that you have to appreciate what you have, and embrace the uncertainty of life. To accept that struggle, and pain, and suffering are all part of the beautiful journey – and without the shitty stuff, you would never appreciate the good stuff.  To realise that in so many ways, I am incredibly blessed and fortunate.

But sometimes, I guess I’ll cry, and feel that life is unfair in dealing me this hand.

And that’s okay too.

sad girl

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Wonderful remission!

Hello all! I can’t believe it has been three months since my last blog post! SO much has happened since the last time I posted! The biggest piece of news I have is that a week ago I was told by my ecstatic rheumatologist that my RA was officially in remission!!!! That’s right – in REMISSION!! I had to really hold back from crying happy tears when he delivered this wonderful news. I haven’t had joint pain for about 8 weeks now, and am managing to lead a pretty ‘normal’ life, albeit with a bit more tiredness than the average person at times. I am working full-time again at a wonderful job with an amazing team. I am practicing hot yoga at least 3 times a week, with some other cardio when I have the energy. I am socializing with friends, and running down hills with my dog, and making love to my wonderful partner. And I am filled with so much gratitude for all of it, more than I ever had before going through all of this. 

How have I managed to go from crippled to feeling fantastic?? I would say that the following have contributed to this full 180 turnaround:

1)     Western medicine, namely Methotrexate injections. I originally took the tablets, but got way too nauseous, so my boyfriend now gives me weekly injections of 20mg. I also take Plaquenil twice a day, as well as Cymbalta (60mg) at night for bed. Cymbalta is an antidepressant which can also be effective in the treatment of Fibro… in my case, it helped exponentially. I went from having crippling bouts of pain in my shoulders that meant I couldn’t use my arms, to not having any pain at all.

2)     Hot Yoga. When I stumbled upon an incredible yoga studio, Kula Yoga, about 6 months ago, I could barely walk. My muscles had wasted, and my flexibility was non-existent. I persevered. Over time I have gotten stronger, more flexible, more balanced. Further to the incredible physical benefits I found from doing yoga,  I found an inner peace that I have never known before. I learnt to breathe – really breathe – through stress, anxiety and pain. When I had a RA flare, or a bout of Fibro pain, I learnt not to panic, but to breathe through it, in the way that I breathed through difficult yoga poses. You can read more about my wonderful discovery of hot yoga here.

3)     Eating clean and green. There are many studies that show the benefits of a low-fat, vegetarian diet in treating the symptoms of rheumatoid arthritis, as well as many other health conditions. Although I’m not a pure vegetarian – I still eat the occasional piece of organic meat – I steer clear of dairy, and eat a heap of fruit and vegetables.  Eating like this has given me more energy, far better digestive health, clearer skin, and a more relaxed and positive state of mind. This new way of eating also resulted in:

4)     Daily green smoothies. These babies have literally turned my health around, and I do not go a day without having at least one. I throw in some organic greens (spinach, kale, rainbow chard, silverbeet, bok choy etc), banana, cucumber, raw beetroot, grapes, frozen blueberries and whatever other fruit/veg is lying around. I add a couple of spoons of Vital Greens, which is an amazing super food powder, as well as a scoop of Maca, maybe some organic honey, and either coconut water or filtered water as a base. I blend it all up together and drink it! I generally drink it first thing in the morning, a whole big jug of it, and as I drink it, I literally feel the nutritional goodness flooding into the cells of my body. My eyes open up and I feel the green goodness reaching every part of my body. I truly feel that these green smoothies have been absolutely pivotal in my body’s turnaround.

5)     Self-love and belief in my body’s ability to heal. I have had a long and rocky journey with self-esteem (or lack thereof) and corresponding body issues.  I battled with an eating disorder in my late teens, and tried to numb the pain of self-loathing with recreational drugs, alcohol and smoking. Although I had stopped those behaviours a couple of years ago, I would still look in the mirror and hate what I saw. I would criticize my stomach, my legs, my butt, my cellulite. I would spend money on lotions and potions to smooth my legs, or get rid of fine lines in my face (they never worked). Then I got diagnosed with RA, and became crippled nearly overnight. I stopped worrying about what I looked like, and just wanted to be able to walk! I realized that the only chance I would have in healing myself was by looking at my body positively, rather than critically. This was not an easy thing to do, and I still have my moments. But now that I have gone into remission, after the most difficult year of my life, I am so ridiculously grateful that my body is WORKING, and I have learnt to appreciate how marvelous it is that I can go for a long walk without pain, or run around with my dog. No longer do I lament about having gained a kilogram, or that my skin is getting older (well, most of the time – sometimes old habits die hard!). I am just thankful for my body, and how it has managed to heal and work again! What a gift!

When I first started this blog, I had already realized that there were positive gains to be made from my diagnosis – despite how horrible it could be.  I was told by many people that RA was something you had to ‘put up with’ and that it would plague me for life, and I am very aware that with many people that is the case. There are no guarantees that I will stay in remission – but there are no guarantees in life! As 2013 finishes up, I look back and don’t just see a year of pain, trials, tribulations and uncertainty – but a year of learning to love myself, and believe in my ability to cope with more than I thought I would have ever thought possible. I have learnt to nurture my body through good healthy food,  yoga, rest and positivity. And each and every day, be it walking along a beach, or being busy with my great team mates at work, I am often nearly overcome with gratitude and an overflowing love for that very moment, at how blessed I am.

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Grateful for every day!

 

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The snowball effect of motivation

Life has really picked up for me lately. Lately it seems that my little concoction of meds, hot yoga, meditation and a mostly healthy diet is beginning to work, and I am a million times better than I was at the time of my diagnosis. After 6 months of not being able to work, I have managed to do a couple of temporary assignments through an agency… and boy has it been amazing! Having something to get up for in the morning… having a routine… having a reason to push past any pain or MTX side-effects, and not indulge in them – it’s incredible. I felt incredibly vulnerable for the first couple of days – I have pretty much been a hermit for the last half-year, so to go back out into the world from 9-5pm, 5 days a week, was daunting. But interacting with other people on a regular basis has been amazing. My confidence has increased, and I am once again excited about life.

snowballThrough getting back out there, I have discovered something probably pretty obvious, but still it’s quite the revelation to me: The more I do, the more I want to do! It has been a snowball effect of motivation. Although I have been very tired from the increased activity, I have a longing to do more. I am enrolling to complete my psych honours next year, and am going to do a thesis on emotional coping strategies for young people with RA. I am determined to get my own online business off the ground, specialising in self-esteem building and life improvement for women. And this is absolutely crazy – but I am nearly through a 30 day hot yoga challenge!! That’s right – 30 classes in 30 days! 6 months ago, I would never have dreamed that this would all be possible… but I’m doing it. I’m exhausted, but I’m alive with hope, goals and excitement for what the future holds. It’s an incredible feeling.

Even if you are feeling absolutely miserable/in pain/fatigued/sick/depressed – it all starts with one little step. Just one. Make a pact to yourself that you will go to a yoga class every week, even if you just lay there. Volunteer somewhere one day a week, even if it’s admin or something sedentary. Write a to-do list, and feel a sense of satisfaction as you tick off the items. Buy some interesting ingredients and make a nice meal for yourself. Push yourself a little bit, just a baby step in the direction of where you want your life to be. Realise that even though you have a chronic illness, with symptoms that  are at times debilitating, you still have a right to have a life with goals. A life with enjoyment, and laughter, and ambition. And no disease, or symptoms, or medication can take that away from you if you want it badly enough.

The best part of this slow climb to fulfillment after hitting rock bottom? You appreciate every little thing. I am so grateful to be getting to work. So proud of myself every time I finish a yoga class, even if I just lie there for most of it. Sometimes my heart is so filled with gratitude that it feels like it is going to burst.

My life with RA may be somewhat different to how it would be without RA. But it will still be awesome. And yours can, and will be too. Take the first step :)

Truth

Truth

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Hidden Blessing #2 – Learning who your true friends are

As you might have gathered, I am dedicating a section of my blog to the ‘hidden blessings’ to be found in chronic disease. The last 6 months since my diagnosis have had some really tough times, where I have felt like my heart (and body!) was going to break – but there have been some amazing realisations and a definite broadening of my perspective on life. I believe you must always try and find the positive in any situation, and look for the lessons to be learnt…

So, as the title of this post suggests – Hidden Blessing #2 is learning who your true friends are. As the saying goes: “a true friend walks in when everyone walks out”… ain’t that the truth! When you get so run-down and sick you can barely get to the toilet without help, you very quickly learn which people in your life will go above-and-beyond… and which people are ‘fair-weather friends’ – that is, friends who are only around when times are good and there are no issues.

hardtimes

If I was to give awards for being absolutely AWESOME  over the past few months, I would have to present them to:

-> My wonderful boyfriend, who has supported me physically, emotionally, financially, mentally – and any other way that he can. The man has earned his stripes – I don’t know how I’d be getting through it without him.

-> My amazing family, particularly my Mum, brother and Grandma. Mum has taken off work to come and help me to the doctors when my flares have been terrible, my brother has constantly checked in on me and encouraged me to keep positive, even when I’ve been a complete mess, and my Grandma has given me endless support, cuddles and love. I feel truly blessed to have such wonderful family members in my life.

There have also been a big handful of incredible friends who have proven to be more caring, supportive and special than I could have ever imagined. From patiently being with me while I hysterically cry, to constantly dealing with my cancellations and re-scheduling without one hint of annoyance, to reminding me again and again that life will get easier and I won’t be forever consumed with RA… my heart swells when I think of some of the beautiful times I have shared with these friends over the last 6 months.

There have even been new, wonderful friendships that I have made because of my diagnosis. A lovely man who has dealt with Ankylosing Spondylitisfor the past 10 years, and who works in the scientific field of creating and improving RA medication. And a few different women who have RA, and handle it with grace, wisdom and patience– one was diagnosed at the age of 5! It has been great to make friends that really understand how hard it can be… that I have been able to laugh, cry and yell with, with absolutely no judgement.

And then, of course, there are the aforementioned ‘fair weather friends’. Some people have gone missing from my life. After asking me to head out at night to events that there was no way I’d make it to, they have dropped off the planet. There have been a few throwaway statements made when I tell them what is going on with me… “oh, you poor thing, I’ll come around soon and visit you”… but that’s all the comments are – throw away.  And as upsetting as I initially found it, to find that people that I previously thought were great friends, well, aren’t – I now feel grateful for the clarity that the past six months has provided me with. It has let me know who  I should have in my life. And who isn’t worth my time and (very precious!) energy!!

charlie-brown

 

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Hidden Blessing #1 – Learning to Embrace Uncertainty

Life, in itself, is uncertain. We could die tomorrow. Or somebody we love could die. We could get fired from our jobs, go bankrupt, get ill, get dumped… the list goes on. As human beings, we instinctively try to get some certainty. Some control. We want guarantees in life. Signed contracts. Promises of til-death-do-us-part etc.

iStock_000014861801SmallI have always been somewhat of a control-freak, and have battled with life’s intrinsic uncertainty. Once diagnosed, I was thrust head-on with my biggest fear – uncertainty. Uncertainty as to which way my disease will go, and how quickly. Uncertainty as to what side-effects new medications will have, and whether they will even help. Uncertainty as to whether I’ll even be able to commit to plans I’ve made a couple of days down the track (flares are unpredictable things!).

Initially I asked my rheumy to guarantee I wouldn’t end up in a wheelchair, through a tirade of tears and swollen joints. He couldn’t. (In hindsight, if he HAD made this guarantee, I would have doubted his credibility and probably would have stopped seeing him).  I felt overwhelmed with fear of what MIGHT happen. What if my RA spirals out of control, and no medication helps it? What if that means I can’t work again, and end up completely broke? What if I can’t exercise properly because it gets so bad,  and then my partner is no longer attracted to me, and has an affair with some woman that has perfect joints,  and I’m left all alone, and crippled, and in excruciating pain for the rest of my life?! Yes – I did engage in this stream of thought more than once. I’ve possibly even censored it just to reduce the level of crazy that I display to you all…  and yes, it is exhausting to have my imagination at times!

I’m still on the journey of finding peace with my diagnosis, and the ways in which my life has changed – and will change – since finding out I have RA. But in the past six months, I have learnt that:

* I must deal with the uncertainty of my disease.

* I must take every day as it comes – riding out the bad days and revelling in the good ones. 

* I must have faith that I will lead a long, healthy life, and that I will work out the best ways to cope with my RA and Fibro over time.

* I must be kind to myself, and preserve my sanity, by only entertaining  ‘positive what-ifs’ … e.g. What if the medication does what it is meant to and I go into remission? What if being diagnosed with RA leads to my calling in helping others battling physical and psychological issues? What if my relationship with my partner is strengthened by dealing with this challenge? :)

Receiving a diagnosis of RA has inadvertently forced me to face my fear of uncertainty, and demanded that I stop holding the reins of life so tightly, and just have faith. This absolutely huge realisation is something I have fought for nearly 30 years, yet over the last six months, I am beginning to finally understand. Which is why I see the lesson of learning to embrace uncertainty as one of the many hidden blessings to be found within my disease.

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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!

to-do-listMy 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.

starting

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My love affair with Hot Yoga

yoga pose

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. :)

yoga pose 2

Don’t forget to seal your yoga practice with gratitude ;)

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