Glimpse into listening to the lessons

Having a body that is not working to its full ability is frustrating beyond description. To begin to explain the feelings that it creates, the words sadness, disappointment, anger, self pity, jealousy, self loathing, and disbelief spring to mind. However, it can also have a positive side. Sometimes, in my low moments, I think of the upbeat things I say about this faulty body of mine, and I roll my eyes at my pathetic optimism! But as hard as it is to see, there has to be something good to come from these situations.

Illness, be my mentor.

I have gradually become more unwell over a period of 10 years, and I was often not well prior to that growing up. I have now reached a point where I can not work, I can not drive, I often rely on others to do basic chores for me, such as cooking, shopping and house work, and I spend a lot of time just taking it easy. As a twenty nine year old, this is definitely not what I currently want to be doing. I would much rather be travelling, working, socialising, starting a family, and generally living life! However, since I had to give into being unwell about six months ago, after years of pushing through, I have slowly started to notice the things that it is teaching me. These include:

• Gratitude. I am forever grateful for the things that my body still enables me to do. I sometimes have good days, and take these opportunities to see friends and family, and do things that I enjoy. I read other people's stories who are in so much more pain and discomfort than me every day, and they have so much courage and enthusiasm to keep going. I am thankful for becoming aware of their stories as it gives me strength and perspective. I am also noticing and enjoying the small things in life that you often don't have time for when life is busy and hectic. The moment of relaxation and anticipation with a hot mug of tea in my hands; the smell of a new book; being joined on the couch by a friend to just chat; to have a hug by a family member; to sit in the sun and enjoy the warmth; to sit quietly alone and just think. I am also so thankful to all the people who have provided me with love and help, particularly over the past few months. Granted, it is a small group, but the quantity of loved ones is not what is important, it is by far the quality.

• Hang on to the people who count. I am so thankful for the people who have stuck around and continued to support and love me despite my inability to give them all that they deserve. I have truly learnt that the people who matter, don't mind, and the people who mind, don't matter. Dwelling on disappointment uses up your meagre and valuable energy supplies when unwell.

• Remember that it is ok to feel sad and angry; giving into it is a part of healing. Saying that you can't feel sad because someone else has it worse than you, is like saying you can't be happy because someone has it better than you. When it hits you, feel it, be thankful for how it puts other things into perspective, and let it go.

• Forgiveness is vital to happiness and health. Living with an illness which robs you of your desired lifestyle temporarily or permanently, teaches you that you need to learn to forgive your body, yourself, the universe, and people around you. So often I have found myself asking my body "why are you doing this to me?", and "who would want to be around you when you're so broken?'', and asking the universe "why do you hate me, what did I ever do to you?" I am starting to realise that this thinking just makes hate, anger and sadness fester. Understanding that you are not being punished is fundamental to your recovery. Also, even though I see that you have to let people who are holding you back go, I also believe that forgiving them and yourself as you do so is also crucial, and maybe one day they will find their way back into your life.

• Do what is important. Being unable to do certain things has made me aware of what I really want to do in my life. Things that I had brushed aside as unrealistic before, are now making their way on to future to do lists. We rush along in life doing what we are expected to do; what we think will make us and the people around us happy. But maybe, when our bodies crumble into shadows of their former glory and surrender to illness, we should take this warning and see that we are not leading our lives as we should. Choose to do what makes you happy and healthy; we only get one shot at this life.

"Life is better when you're laughing."

• Listen; to ourselves and to each other. I pushed myself so hard for so long, even though my body was screaming at me to stop. I did this because no one could tell me what was wrong, and I was made to feel like I was overreacting, and just had to keep going. Now that I look back, knowing something was actually wrong, I can't believe what I forced myself through, and the things I put up with from other people because we didn't understand that I was sick. It has taught me that we really do need to listen to our bodies, and we shouldn't have to defend ourselves when we know something is amiss. When we have a cold, or a stomach bug, we know we should give into it, ride it out and rest. Whereas when something arises which is debilitating yet harder to see, without the excessive out flowing of bodily fluids (like chronic fatigue, orthostatic hypotension, thyroid issues, or other invisible chronic illnesses), we insist on struggling through, or don't recognise that others are unwell due to the less visible symptoms. Someone used to regularly ask me "what's wrong?" and get angry at me because I might start out with energy and be upbeat, but then descend into lethargy, and they mistook this as me being upset at them or bored by them. Because I did not understand what was going on, I didn't know how to explain to them, and they would continue to get upset at me. This used to make me feel so useless and desperate, because inside my body felt so heavy and it took everything in me to give as much as I could, and it felt like that never was enough. Now that I know something is wrong, it has become easier to give into it, and stand up for myself. If someone around you is not themselves, understand that it is important to support and love them, whether they can put a name or reason to the cause or not.
• Enjoy where you are in life. Sure, I am not out partying every weekend, a trip to the shops can leave me in bed all afternoon, and lunch with friends sees me struggling to keep up with them. But I try to enjoy what I am able to do because of this illness. I can not work, so I do not have the stress that comes with full time nursing shifts. I am currently living with my parents, so I have a lot of help and do not need to worry about cooking and shopping and cleaning. I have tried to push away the feelings of guilt at not doing these activities; I need to make the most of being able to read a book all day if I choose. Sometimes we need to be selfish, to look after ourselves, and then we will be able to look after others when we have healed. I have gone through mind numbingly boring days, where the minutes painfully tick past so slowly that I feel like insanity will smack me off the couch. But I can not do anything about my situation more than I already am. I can see when I do a couple of hours of gentle activity, that my body is not anywhere near where it needs to be to return to work, so I should be enjoying the time I have, rather than resenting it. How many times do we say "if only I could stay in bed today and watch movies," when we are on our way to work?! Even though it is not as good as it seems, I need to give into the fact that this is where my path is leading me for the time being, and I should make the most of it, and let the healing take place. Even though it is not the life I want to currently be living, it is still ultimately my life, and if I spend these months full of resentment and boredom, I have wasted precious moments.

There is so much that we can learn from being unwell, or from other people's struggles. It is so important that we do not fill our minds and bodies with bitterness, anger and sadness when we find ourselves in a situation that we can not control. This will slow the healing process, push people away, waste our time, and continue the vicious circle of unhealthiness. Embrace the unique opportunity you have been given to slow down and see what is important, recalibrate, start afresh, and make the best life that you were born to have.

"You were given this life because you are strong enough to live it."

Glimpse into movement; every bit helps!

During the evening of Tuesday April 16th, Mum and I went to a two hour seminar held at the Hilton Hotel by Gwinganna Lifestyle Retreat. The topic of the talk was the concept of using movement to be healthy.

The main message of the evening was perhaps an obvious one, but very overlooked due to our society's current mindset; move. Push, pull, bend, lift, take the stairs, park further away, stand when answering the phone, move, move, move. We have had it drilled into us over the past few years that if we do a session of exercise most days, we will be fit, a healthy weight and live longer, despite sitting at a computer all day, and carrying out tasks in the most convenient, time and energy efficient way. However, the research that is now coming out is that people who do this do not beat the health benefits (hip and waist measurments, lifespan, fitness) gained by the people who just keep moving throughout the day. It does not have to be much; just incidental movement, as much as possible throughout the day.

It struck me that this is not only more beneficial to us and potentially more conveniently attained, it is also easier for people with chronic health issues to warrant as feasible.
On days when the bed or the couch is moulding to the shape of your body, stretching your arms and legs, or turning your pelvic floor muscles on with a gentle clench, is much less confronting than the idea of going for a walk for an hour! I know that I have definitely fallen into the trap of thinking that because I have such poor exercise tolerance and can't do my beloved gym or swimming sessions, that I have to give up on the notion of having any type of fitness or strength, and can sit on the couch and eat cookies, almost guilt free. However this idea that incidental movement every 20 mins or so is more beneficial than a big session once a day, means I am motivated, and am not let off so lightly!

Obviously, some health issues still make this difficult. On days when I am severely fatigued and dizzy, it would be dangerous to not ask for someone else to fill up my water. But on days you can safely do it, use the incidental things that need to be done as a form of exercise. Noone else can go to the bathroom for you, so when you walk there, go the long way! Maybe that means walking around your couch twice on the way out of the lounge room! While you wait for the kettle to boil, clasp your hands together and stretch your arms out in front of you, stretching out your arms and back.

For people who are healthy and going about their day, keep in mind this concept of incidental movemement. If you move every 20 minutes, it does more good for you than an hour at the gym. So, if you're parked at a desk all day, come up with ways that fit your job routine so that you are able to move every 20 minutes. Put the printer further away so that you are forced to walk to it. Physically visit your collegues down the hall rather than emailing them about work issues. Take the stairs instead of the lift (Do you work on floor 28? Don't make excuses!...walk down to floor 27 and take the lift from there, and then next week go to floor 26, and then floor 25....).

A move that the speakers really encouraged was the Asian squat. Sitting in chairs is so bad for us and it is a move that humans are not designed to do. Way back in the beginning, we did not have chairs. Our body design has changed so minutely over those thousands of years, that we should not be doing things too differently from what our first ancestors did. However, our lives are massively different. Bringing one thing back to our day's routine, the Asian squat, could help us to realign our bodies to where they should be. We were advised to do this move for one minute in two sessions a day, but if you can get up to ten minutes, all the better.

Take a look at this great video that I found that has fun with the Asian Squat! http://youtu.be/gWTmg4dHiKg

One speaker said that he eats his breakfast cereal this way each day. There are a lot of daily activities that could be done in this position; cleaning your teeth, watching the tv, drinking your cup of tea, the list goes on! It may take time to build up to being able to keep your heels on the floor, but as you loosen your tight muscles, your legs, hips, back, core and pelvic muscles will all become so much happier. It also massages your insides, so your gut is happier too, and your blood circulation is improved. Studies have shown that communities that practise this move as part of their daily routine, live a lot longer than those that do not.

Sure, she might not look too happy, but for all we know, she is 152, and is babysitting her 83 descendents!!

Do not give up on your one hour session at the gym; that is still a great thing for your body. Just make sure that you do not fall into the misguided thinking that you can be stationary all day, be active for an hour, and be slim and healthy! And if you have a low exercise tolerance due to health issues, be motivated by the notion that every little movement has been proven to greatly improve your level of fitness, maintain a healthy weight, improve your mood, blood flow and so much more!

Just so you know....While I have been sitting here writing this blog post, I have been bouncing my legs under the table, walking to the tap to refill my water (and taking the long way back to my seat), pausing to do Asian squats, stretching my arms and clenching my stomach muscles!

Glimpse into dizziness; my hypotension progress

I have been playing the waiting game for the past few weeks, so have not posted about my personal health progress lately. I have been monitoring to see if the new medication would assist me. It has been six weeks since I started it so it is still a little too early to tell, but it is possible that I am having some positive effects from it! I have had some bad side effects from the drug; headaches and nausea most days, and trouble sleeping, but hopefully they will ease.

On Monday, I went for another regular check up with my GP. We decided to start the next planned medication; Fludrocortisone. It has been a big decision, weighing up the pros and cons. This drug is a type of steroid, similar to the type that is naturally produced by the body, and it will hopefully assist in increasing my blood pressure. Obviously, this is not something to go into lightly. However, next to fatigue, the light headiness, dizziness and loss of vision that I get regularly is having such a huge impact on my life. I have suffered from chronic postural/orthostatic hypotension for as long as I can remember, but at the moment it is at the point where it is dangerous for me to work or drive, and I am rarely let out alone because my family worry that I will end up in a heap by myself! I have experienced becoming lightheaded and blacking out 3 times when driving over the past year or so, and let me tell you, it is an extremely scary situation to be in, and has made me very nervous (hence I have not driven in almost 5 months!). I miss my freedom, so it is one reason pushing me to take the medication.
When Mum tried to fill the script she was told by the pharmacist that they only get a couple of requests for this medication a year, so don't stock it! So we have waited for a delivery and I will start today.

I am well and truly down in the blue section of this graph!

If I am starting a steroid, I wonder if it means that I can not compete at an elite athlete level now? Damn, and I was so close! ;-) But if the alternative is a full body inflatable body suit (these are actually available!), I will take the medication!

I really do hope there is some improvement with this next medication. If this doesn't help, there are not that many options left for my hypotension, if any at all. The doctor would like me to put on weight, as I have lost some lately due to my illness, and he thinks that will help, but at the moment, that is not happening, despite eating regularly! A moment on the lips, and rarely on my hips currently!! Teflon genetics a friend calls it!!

Apart from this, I am just keeping on keeping on. I have been able to get out and do a few things lately, though my stamina is still not fantastic. However, after such a long road, I am happy with small steps! I am feeling positive, and keeping my eye on the prize!


Do you have any experience with Fludrocortisone? I would love to hear any advice anyone has!