The bubble that burst

It has been AGES since my last post. To be honest, I was too busy living an awesome life to even contemplate blogging about chronic illness. I was in remission, and full of positivity. I felt completely at peace with the fact that I was having weekly injections, and regular blood tests, and that I technically had 2 chronic diseases – because I felt good! I even went skiing a couple of times over winter!

Then, the bubble burst. I caught a reallllly bad bout of the flu. Now, I’m not talking a regular cold, or sniffle, that people CALL the flu. I mean, I’m even guilty of doing that in the past. There have actually been quite a few times in my life when I’ve felt pretty shitty, and I actually thought I had the flu.

But… No. I recently learnt that up until now, I have NEVER had the flu. The true flu is HORRIFIC. I had several weeks of a hacking, non-stop cough. A fever that left me drenched in sweat, yet unable to stop shivering, to the point that I sometimes was nearly convulsing I was so freezing. A splitting headache that would not go away. Debilitating fatigue. A body that ached right through to the bones.

It sucked. Royally.

My rheumy took me straight off my MTX injections because it was too risky to suppress my crappy immune system when I was so darn sick. Because it took me so long to get over the flu, I was off it for a good month. THEN I tried to get back onto the injections, and every time I had one, I would spend the next day with my head in the toilet, throwing up non-stop, feeling so smacked out that I couldn’t keep my eyes open.

Horrible.

On top of that, my fibro started flaring up, and my joints started to swell. I had taken over 2 weeks off work with the flu, and was then in and out of work, taking more sick days that I didn’t have, because I was just too sore/tired/unwell to be there.

And what I realised through all of this was this:

It is so easy to say that I’m at peace with everything, when nothing hurts.

It’s so easy to be totally zen, and sit there in a cross-legged yoga pose, and talk about how blessed I am that my perspective is broadened by my diagnosis, and how lessons are to be found in everything in life – when I’m in remission and physically ABLE to get into said cross-legged yoga pose.

It’s so easy to think that I’m doing so well at life, when everything is going well, and my body is behaving itself!

When everything goes to shit, all of a sudden, being positive isn’t that easy anymore! I had felt so ‘normal’ for a while. I had mentally and emotionally filed the pain and fatigue as a thing of the past… something that I wouldn’t have to worry about anymore – even if logically and statistically, that wouldn’t be the case. Going skiing, working out – doing things a 31 year old does, and feeling good like a 31 year old should feel – it lulled me into a false sense of security. A fantasy world where my diseases were forgotten… things of the past.

Then: one flu threw all of that out the window.

I am currently so exhausted that I am struggling to even make myself food to eat at home. After taking two weeks off work with the flu a couple of months back, I have now had sporadic days off ever since, and am now in the midst of a whole other week off work… I just can’t get there at the moment. I feel so awful about this… so stressed… and then I remember that stress just makes everything worse, and I stress about stressing!!

I have rallied the troops around me. Doctor’s appointments, rheumatologist appointments, frequent phone calls to my psychologist, guidance from my naturopath, programs from my exercise physiologist. I’m trying to keep some kind of structure to my day, despite the fact I just want to cover my sore body in heat packs and sleep for a decade.

I’m trying to not let myself sink into this depressive quicksand I am currently submerged in. I can feel it tugging my mood down, down, down. I don’t even want to speak to my friends right now, because I’m just so morose. Last night one of my girlfriends managed to get a hold of me me, and told me she was pregnant. I was so very happy for her – yet I got off the phone and cried my eyes out. It feels like I have gone back all the steps I fought so hard to take, and now I’m stuck in this quicksand, stationary – while everyone else’s lives move forward, the way lives are meant to.

This blog was originally started to ‘look on the bright side’. To find the positive, or even the funny, in chronic illness. At this very moment, as I contemplate my life, and face up to the fact that even if I have some good points, there will be times when I feel THIS terrible… well, I find it hard to find anything positive in that.

fatigue-depression

Close to empty

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4 wellness tips for people with chronic disease (or for anybody, really!)

As most of you know, I am currently in RA remission, which is no small feat, given how crippled I was last year! While I am not discounting how much the drugs I am on have contributed to this, I have also made some big changes to my life in terms of healthy living. I feel that this hasn’t only helped me achieve remission, but it is also giving me the best chance to lead a long, happy life – as well as bolstering up my immune system (which needs a constant boost after the MTX has a go at it!)

The following are four things that I see as very important in my own quest for a healthy body:

1)      Eating more fruit and vegies.

No better start to the day than a big green smoothie!

No better start to the day than a big green smoothie!

In particular, upping my intake of green vegetables. Green smoothies in particular are an awesome way to get lots of greens. The green smoothie I have most days is banana (I often buy a bunch and peel and freeze them), chopped kale/spinach/silverbeet, ½ chopped cucumber, a handful of frozen organic berries, coconut water or almond milk, a couple of spoons of LSA, and a big tablespoon of Vital Greens (amazing stuff!) or Spirulina. Throw it all in a blender, mix it all up until smooth, and drink! I find that it instantly gives me an energy boost, even as I drink it. There are also heaps of different supplements you can add to it, should you wish. I play around with what I add; there is no end to the possibilities.

 

2)      Looking after my gut health.

Did you know that 80% of your immune system is located in your gut!? I know – crazy! Prior to my diagnosis I was constantly having health issues, especially ongoing infections, which meant I was continuously on antibiotics. This led to my gut been stripped of all the good bacteria – and good bacteria is essential for good gut – and therefore good immune – health. I have managed to slowly but surely claw my way back to decent gut health, by taking high strength probiotics (stuff like Inner Health Plus, and other probiotics you can buy over the counter at the pharmacy, are crap by the way – there are much more effective products available – get a good naturopath and they will sort you out with the good stuff! ). I also managed to get some milk kefir grains, and now I make my own kefir every second day, which has been a big turning point in my quest for a happy gut. Recently I have been getting into bone broths, which have an incredible range of health benefits, as well as being one of the best things you can have to repair your gut.

If you have Rheumatoid Arthritis, or other chronic diseases that cause pain and other shitty symptoms, chances are you have taken and/or are taking a fair whack of medicine, be it antibiotics, anti-inflammatory or immunosuppressants. This makes it even more important that you nurture your gut and give it what it needs to thrive.

3)      Focusing on relaxation.

I’m naturally highly-strung. Yes… I’m loud, and excitable, and by all accounts extraverted… but this excitement can very easily swing into anxiety – and shocking anxiety at that. Stress, especially over long periods of time, is extremely detrimental to one’s health. An overactivated autonomic nervous system and the ongoing excess of hormones such as cortisol and adrenaline have been linked to depression, heart disease, hyperthyroidism, anxiety disorder, diabetes, tooth and gum disease, ulcers, cancer, and sexual dysfunction.  Wowzers. Being a person that is prone to anxiety, when I learnt how dire stress was, I got anxious that my anxiety was causing physical damage to my body. And yes, I realise the irrationality! Being rational doesn’t always come easy to me!

So I made a pledge to not let stuff get to me. To take at least ten minutes a day to sit quietly somewhere, and just focus on my breath. To be careful about whom I spend my time with, and to avoid people and situations that unnecessarily stress me out. This may be hard if you’re a born people-pleaser (it is hard for me sometimes, I hate saying no)! But seriously, you get one body. If you’re a subscriber to my blog, there is a good chance you have already had, or are having, a bit of a hard time with your health lately. So why not do everything you can to look after yourself, and conserve your energy for the stuff that makes you happy, as much as you can? As soon as I started looking at it like this, it suddenly became a lot easier to say no to those people and situations that are no good for my mental health.

4)      Embracing sobriety.

Saying no isn't always easy - but it's worth it the next day!

Saying no isn’t always easy – but it’s worth it the next day!

Alcohol can be fun. At the time. And I won’t lie – I have given it a fair crack during my late teens and well into my 20’s. At times I still wish I had the energy and the desire to head out to the pub like the good ol’ days and get silly after too much champagne. The thing is, alcohol makes me feel absolutely crap. If you’re on MTX or similar, drinking booze means putting your poor liver under strain – when it’s already trying to deal with the immunosuppressants you are on.

Up until recently, I still drank alcohol regularly. Not like I did before I got diagnosed, but I still had a few cocktails on occasion. And despite being nowhere near drunk, I would wake up the next day feeling super fatigued, achy, flat, and anxious. This would last up to a week. So I got to thinking: why am I doing this to myself? I have decided it is not worth it. So I have stopped. Actually, I’ve made a pledge to not drink booze for a whole year! I’m 2 weeks in. And I already feel a million times better…  it’s amazing what a difference it makes.  Therefore, I wholeheartedly recommend giving alcohol the flick – or at least minimising your consumption. I’m using my one year sans booze as an opportunity to raise money for Arthritis Victoria – this will not only keep me accountable, but it means that going alcohol-free benefits other people besides me.

That is just 4 things I am focusing on for now, to try and be well! Give something a try … I’d love to hear how you go! :)

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Advice for the old me

It’s less than 2 weeks til my 31st birthday, which spins me out. My mum used to always tell me that the older you got, the faster life went by. I never really believed her – but hey, what do you know! She was right! It has also been nearly a year and a half since my diagnosis… and it has certainly been a roller coaster ride. I’m still standing though, and still smiling. It got me to thinking: if I could go back and talk to the 29 year old version of me that had just gotten diagnosed with RA and Fibro, and was scared shitless, what would I say?

I would tell the old me that although it feels like the end of the world, that it’s definitely not. Medication for RA has come such a long way, and there will be medication that can and will help you.

I would tell the old me to stay away from Dr. Google, and that searching Rheumatoid Arthritis in Google Images will show the worst possible scenario, and is not conducive to coming to terms with this news.

I would tell the old me to trust my rheumatologist, and to be wary of ‘healers’ who try to turn you against western medicine.

I would tell the old me that I have faced other tough times in my life, and come through them tougher and stronger than before. Even if I feel like hiding under the covers and never coming out – I will come out, and I will cope with whatever life throws at me. And I’ll be okay.

I would tell the old me to not be afraid of pain. Yes it sucks, and it’s tiring, and you would prefer it not to be there. But it will come and go, and you will learn the best ways to cope with it. You will learn to have a hot bath when you ache all over, or to ice certain joints when they get swollen. You will manage.

I would tell the old me that even though you will hit rock bottom for a little bit, you will climb back up again, and be so damn proud of yourself. And all the little things that you took for granted before, like going on a long walk with your dog, or doing a stupid dance in the lounge room with your partner, will fill you with a joy and appreciation that you have never felt before.

I would tell the old me not to worry too much about the future. Life is uncertain. For everyone. With or without the diagnosis of a chronic disease. The diagnosis will just bring highlight this truth to you for awhile, and that’s not necessarily a bad thing.

I would tell the old me that it won’t be easy – but you will still have a wonderful life. Just one with greater awareness. And more opportunity for growth.

And that in itself is a blessing.

I would definitely give the old me a HUGE hug too!

I would definitely give the old me a HUGE hug too!

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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.

Image

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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