Glimpses into living life with an autoimmune disease (Hashimoto's Thyroiditis), postural orthostatic tachycardia syndrome (POTS), postural hypotension and chronic fatigue syndrome (CFS/ME)...ideas, experiences, the struggles, and the successes!

About Me

My photo
I love finding new worlds through writing and reading. I am excited by creating new flavours and tastes in the kitchen. I am fascinated by nutrition and healthy lifestyle choices. I adore my my dog, family and friends.

Saturday, 27 April 2013

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."

    No comments:

    Post a Comment