The riddle of the bed #riddle #life #formymother #truth #survivor

– In loving memory of my mother –

Many years ago my mother asked me this riddle, probably in the hopes of occupying the mind and time of an overly analytical (and maybe a bit precocious) child. She asked me “Do I think that the first bed was invented by a very tired person or a very lazy person?”

For years I would wrestle with this question whenever I needed to fill a dull moment and especially when my mother passed away. It was the memory of how we used to talk and debate that are amongst my fondest memories of her. She may not have been the most nurturing or affectionate of mothers but I rank her as one of the best people that I ever had the good fortune to talk to. As a conversationalist and confidante she will always be missed.

My mother died before I got sick and while I am glad that she is not alive to see me go through these difficult, heartbreaking and endless battles, I do miss the ability to talk to her and laugh with her during the hard times. Thankfully I have several people who are very close to me that are able to assist with this, and I love them dearly for it.

One of  the regrets that I have that my mother passed away to cancer, was that I miss our conversations, she died much too early and painfully and finally I believe that I now have an answer for her riddle.

When we imagine beds we imagine them as being a place soft comfort for a tired and weary worker, we may also see them as a hideaway from the rest of the world for the idle and the lazy, but sadly the other function they perform is that of a necessary confinement for those too sick to leave them. These days I fight for every moment that I can leave my bedroom. I pay for every moment that I am not resting in my bed and even when I lay in my frilly, girly, soft sheets, they provide very little by way of comfort or escape from the pain and symptoms that I share my body with. My bed is not a luxury or a place of idle distraction, it is a my ‘life support’, my hospital, my confinement, my prison, my closest friend, my reminder of my health and my world. I have a love/hate relationship with my bed but there is no where else that accepts me, holds me, feels my pain, hears my tears and I there for me no matter what I am going through.

The answer to the riddle for me is that the bed was intended serve as protector for the sick and unwell as they suffer, as they heal, as they rest and in the final hours before they die, which is why hospitals are full of them and it is where you will find the chronically ill and sometimes its the last place you will see a loved one before they die.

Gentle hugs,


The Autoimmune job description. #thewholestory #truth #life #struggle #love #connect


Years ago, in my ‘other life’, I was a project manager in the I.T. world and worked long hours and on many different projects, sometimes simultaneously and it was a very high stress, long hours, challenging and dynamic role.

With each new project I had to establish relationships, set schedules, meet milestones and deliverables, manage teams and customers, balance budgets, fix problems, do risk analysis, multitask and sometimes the hours were almost staggering. During one very difficult time I clocked over 120 hours in a week. Yes. Three normal working weeks in one week! How? Up until 1 – 3 am with overseas teams, customers, planning meetings, problem shooting and then starting working again at 6 – 7 am local time. And repeat. 7 days a week. It nearly broke me. But for this I was paid well and met a lot of very talented and interesting people all over the world.

Then I started getting sick.

Today I am medically retired from my career but have I stopped working? No. When people imagine me they probably think of someone who sits around doing the odd bit of physio, contemplating life, taking a lot of drugs and resting. Sadly that is the glamorized version. The Hallmark card version of the true experience.

I work harder now and go through more pain, stress, anxiety, risk assessment, meetings, problem solving and multitasking now then I ever did in my ‘career’. That life I had before of endless work, no social life, workaholic, corporate environment is a dream holiday from the life I have now. Here is why.

I am still up to 1 – 3 am trying to get my body to let me rest (meds help, but I cant rely on too many so mostly I bare down until my body gives up with exhausted and lets me sleep. A full body flare means NO sleep at all. I generally sleep only for a few hours before waking, in pain, and doing what ever I need to do in order to get more rest, if possible. When my husband and I finally abandon hope of sleeping and decide to ‘clock on’ its a grueling stretching routine, painful range of motion exercises, massage and meds before I can place a foot on the floor. Next 2 hours is showering and dressing and covering my entire body with a film of coconut oil for vital protection from dryness and infections. Mouth sores treatment and then its time for some walking (zimmer frame) to keep muscles moving and try and cope with balance issues. Affirmation / meditation is a vital part of my mental wellness or I would have probably needed to be institutionalized by now due to feelings of futility and frustration. Lunch? Possibly. Chemotherapy shot and wait for headache, nausea, fatigue.

Now its late afternoon and its time to do some more stretching, reapplying of heat packs, massage, meds, oops! I forgot constant eye lubricating, sipping water, bathroom visits, time for screening up so I can do a little ‘outside’ time. I am now sensitive to light and UV so that means I CAN go outside but not for long and never unprotected. Sometimes Zimmer frame (if I am feeling masochistic) and sometimes wheelchair. I push myself to keep moving. The last 9 months have seen me declining and several relapses, so I must keep trying. Keep pushing.

My ‘team’ include Me, hubby, Fur kids, Primary health Care provider (GP), team of specialists (Rheumatologist, Ophthalmologist, Neurologist), OT, Physio, Biologic nurse, the man who injects my joints with steroids (He is nice but he hurts) Hospital nurse, Vampire nurse (monthly blood screenings), Hospital MRI and Neurology department and finally Chris the Chemist (Yes, we know his name and he knows us intimately). I ‘manage’ none of them. Mostly they all work independent of each other and sometimes have no idea what each other are doing and sometimes even give conflicting advice. What I do is more like navigating them.

Evening can be worse, depending on the ebb and flow of the day and how much disease activity is going on. I don’t manage these diseases, they have a mind of them own. I share my body with them. I do anything I can to minimize its ability to take me over entirely. I follow a strict diet. I don’t drink. I don’t smoke. I try to avoid stress and infections. I take vitamins, steroids, chemo, biologics, immune-suppressants, pain relief and anything else that might bring me closer to living stronger and slowing down the slow eating away and damage that has been going on in my body for over a decade. It is now systemic and has attacked every organ and part of my body from my brain to my toes. In between I must fit in bits of life and show no trace of this to the rest of the world; they don’t understand. They can’t. Its all too hard to comprehend. Try and get hair done, meet up with a friend. All of this can must be added to the struggle. There is no such thing as a pain free moment.

I have met some wonderful people from all over the world that fight their own versions of my diseases and wrestle with the fact that we have this fight for the rest of our lives. I interact with them and connect with them and we try and keep each other afloat. Sometimes the hardest battles are with the ‘other world’. The world of the healthy. The world of the ‘I don’t understand what is wrong with you and why you are never going to get better’ world.

We feel tired, forgotten, misunderstood, lost, unwanted, guilty, sad, angry, grateful, frightened, confused, in terrible pain, anxious, frustrated, envious, out of control, betrayed, dehumanized and hopeful. Sometimes all of them at the same time.

So since ‘retiring’ the hours are longer, the conditions are so much worse, the days are harder, the problems unsolvable, the project is unending, there are no holidays or days off, no leave and no minimum wage.

Not everyone who stops working or retires is enjoying the good life, but we are trying to make a life out of what we have and who we have in our life.

Gentle hugs,


Time and Relativity. #Science of #Chronicillness #respect and #lifeskills #coping

No matter if you are a trained scientist or the average person, you will have no doubt have heard of Albert Einstein and quite possibly his theory of relativity. While I am not asking you to study it, put very simply, Einstein explained a theory or how ‘time’ was relative and what this meant with respect to gravity and the speed of light.

Special relativity says that every person has their own time. One person’s clock says something different from another person’s clock. The reason a person’s time can be different from another’s is because of time dilation.

What is my point? Well… I started to think that my own perception of time has very much changed since getting sick. How time passes to me is very different from the rest of the healthy world.

In the time that it has taken me to shower and dress, the rest of the world has finished half a days work (2-3 hours lost). In the time that it takes me recover from a dose of weekly injections the rest of the world is enjoying their weekend (a week lost). In the time it takes for me to trial a new med to see if my body is showing signs of responding, some people have been through an entire pregnancy and given birth. (9 months gone). In the time that it takes me to get to see a new specialist and do scans and blood tests for them, a year has passed and countless holidays, birthdays, weddings, celebrations, graduations etc.

In the time that I have been ‘medically retired’ and unable to work or do basic things without assistance, children have grown, friends have changed jobs, people have moved on. I am still here and struggling with the same things.

I do notice the passing of time when I see the seasons change or when I look in the mirror and see signs of aging, but apart from these visual cues it is one big time-blur for me. I don’t / can’t plan beyond today and tomorrow may be completely different than I could have ever dreamed. My years are no longer numbers (ie 2010 or 2014) but “the year I was diagnosed with this disease, or the year I lost my ability to work, or the year another disease was diagnosed and joined the list”… and so on

Time, for human beings, is relative to you ability to experience it and enjoy it. If you can not predict, plan, interact, change, move, dream, have a physical and independent existence, then time has an entirely different meaning. For those of us in these situations then we are outside the normal rules of time. We are the ones that time, and Mr Einstein, has forgotten.

So how can we measure time? I am trying to retrain the way I measure time for my own purposes. With milestones which are outside the norm for others. They become, “the time that it takes to ride out a flare/relapse”, “The year I got to enjoy my birthday “(or my partners birthday), “The year I was proud of how I coped  with the challenges I had”, “The year I met some important fellow long-term fighters that made me feel understood and accepted”, “The year I wanted to help advocate for other”. This is my version of time. No matter how long it takes according to the outside world. No matter how much others have changed, grown older, had families, left the country, retired etc. My measure of time is very much relative to my disease activity and the abilities I have in each moment. I haven’t worked out how to measure time in any other away; with all due respect to Albert Einstein.

Gentle hugs,


The Three R’s #coping #lifeskills #truth #live #life #respect #humanity #illness


The three R‘s of surviving a chronically ill moment

Rest. – Its pretty simple. Its more than an ‘option’ it is a requirement for someone with a broken immune system or other chronic illnesses. Go somewhere, anywhere and REST.

Release – Whatever it is that might be worrying you at the time, that might have you feeling anxious, guilty, worried, sad, lost, alone. Breathe. Think about how you might be feeling in the moment and… release. Breathe and release. Let it go while your body needs you to go into caretaker mode.

Remember – You are loved, you are important, you are valid, you are human, you are perfectly imperfect. Your life doesn’t have to look a certain way in order for it to have meaning.

Gentle hugs,


Mothers Day #thanks #mothers #chronicillness #love #respect #lifeskills #coping

I can remember being in hospital when Princess Diana was killed. The media covered every second as it played out over several weeks; probably even months. The media will always lunge onto some human tragedy and pick the bones dry before moving off to devour (or invent) the next storyline. But I wont bore you with my thoughts on the media, and why I stopped watching TV several years ago. That will be another time.

I can remember laying in my hospital bed and being bombarded with pictures and speculations, and then for a brief second a picture of Diana’s two boys flicked up. Two little boys. Honestly they looked like they never really understood the media circus that was going on? How could they? They were just two little boys who were now without their mother. That is truly what any tragedy comes down to. No matter what the rest of the world thinks, feels, says, does. Its the human experience which separates those who watch and those who feel.

Going through life without a mother or mentor is not easy, especially when we are going through some of the hardest times of our lives. As I write this it is coming up upon Mothers Day and I think to myself one of the many things that I have missed about my own mother is that she was gone before I got very sick and so she doesn’t know the challenges I face every day. There is no motherly ear to hear my thoughts and experiences. I cant pick up the phone and tell her what is happening or how worried I may be. The human experience.

I can only imagine how difficult Mother’s Day and Father’s Day is for those who face similar challenges and daily struggles, not being able to turn to a parent and share these difficult times. When we lose the parent/s we are closer to, it is indeed a life changing experience. The parent – child bond can be a very special one and irreplaceable one. Learning how to parent yourself and love yourself unconditionally is often a very difficult skill to master. When we lose a parent we have to care, comfort, reassure, encourage and validate ourselves even during our darkest hours.

Although many parents encourage us early in life to reach for the stars and ‘be all you can be’ and can probably want more for us than they might have had, I am sure that deep down all a parent really wants is for us to live happy and fulfilling lives. I like to think that although my mother is no longer alive, that’s all she would want for me today. The human experience. If she were alive today, although I am sure she would be quite worried over how my health has declined, she would also want me to live a life I can be proud of. And I am. I believe that for others out there who have faced these difficult health challenges and pain without a parents love and encouragement, I know you can still have a life that you can be proud of and that would make them proud too.

In loving memory of my mother,


When it’s enough. #lifeskills #truth #honesty #dignity# #peace #surviving


There seems to be so many opinions and feelings when it comes to “what is enough?’ Yours. Family. Friends. Employers. Media. Society.

“Have I done enough?”
“Do I do enough?”
“Am I enough?”

When I was younger it was all I thought about, and the answer I came up with was always NO! Today, after a very long journey and countless hours of self reflection and struggle, I am pleased to say that:

“I always do enough” (that my body can handle)
“I can only do what I can do, on that day, in that moment”
“I can only do what I know how to do”
“I am enough for anyone in my life.”
“I have enough of what I need to take me to tomorrow”
“I am enough for me”
“I am worthy enough for all I do and for all that I am (sick OR well)”
“I will die with enough of what I needed to have a complete life”

This is what I have learnt and I have learnt it the hard way, through the lessons of life.

Gentle hugs,


Lets Party!.. #fun #coping #dignity #celebrate# Party #chronicillness #straystrong

If you have had a chronic illness for longer than 12 months, then the chances are that you have already had to face the difficult and emotional task of having to deal with some of these things;

1. Next to no social life

2. Become quite isolated from friends and family

3. Know your doctors / specialists better than your friends / family.

4. Have had to cancel so many plans.

5. Have had to cancel out on invitations to weddings, special occasions, parties, celebrations.

6. Have felt so disappointed and depressed from having to miss out on weddings, special occasions, parties, celebrations that it has kicked of some ‘reactive depression’.

7. Wondered if you will ever be able to predict your ability to do anything again.

8. Gone and done something, just for the sheer thrill of being out of your home, only to find that the repercussions are agonizing and may take days or months to recover from.

What to do?

This is the endless, cyclic question that has haunted me for nearly 10 years now. The never ending quest of having some time with others that will not almost kill you and be able to feel like you are still part of the outside world. Straight up I am going to admit that there are no EASY answers here and all I can tell you, at best, is some of the things that I have attempted to do to try and assure you that I will always be looking for new answers for as long as I live and breathe. That’s just my nature.

Firstly, I try and think about the things I can do.

1. I can type. (for now) which means I can email, Facebook, use online methods of interacting with my friends and loved ones. Skype. Facetime.

2. I can manage to recline and watch a movie. So I thought “Why not invite other people over to watch with me?”

3. I can drink coffee. So I try and drink it with a friend when possible. At my home.

4. Bring back the pajama party! I am going to do MY bit to bring back this childhood joy! I hope to start an epidemic of pajama parties which would make the average 9 year old drool with envy. And even if I can only last for less than 2 hours, and can’t seem to cope with more than a handful of people at a time, they are still going to be the best parties! This I vow!.

5. I am going to make a special attempt to go to an event, if I can, but only for as long as I can make it. If that is 30 minutes, then it will be 30 minutes I have shown someone that I tried.

6. If I cant make it to something, I try and make a special call to them and thank them for their invitation. Tell them how much it means to be included in their thoughts and tell them the invitation means more than they know.

7. I write to them and personally thank them again. An email. A card. Flowers.

You tell your friends and loved ones your limits. For example, the days that are better, what your best times of day are, what you can and cant do, what meds and equipment you will need to take… Honesty is the best! And besides, if they love you and you love them, then you want to be honest.

You may not be in control of your disease or your limitations but you are in control of the way in which you respect yourself and the dignity you bring to your struggle.

Gentle hugs,