Words Don’t Come Easily… #respect #coping #connection

I am a member of several health and support groups and I have to say that some of the stories and experiences we share are truly heartbreaking. Nowhere have I seen pure humanity at work than between those who share health struggles and battles together. 

Words can barely describe the ways people are suffering out there and how much their lives have been torn apart and changed forever. 

It is so hard to take at times. 

I see people struggling with pain and rejection. People driven out of work and out of homes for things we didn’t deserve or ask for. 

I find I can’t spend too much time in these groups without feeling such empathy and pain, so I dip in and out and hope that a few well placed words and thoughts will go towards somehow helping. That is my hope anyway. 

I also think that as painful as it is for me to be amongst these sufferers, fighting similar battles and hurting in similar ways, it must be hard too for our significant others to watch us wrestle with these demons. In a strange way I am glad this has happened to me and not to my partner. I think it would break me emotionally. 

Before being in this place, and back in healthier times, I could never have imagined the plight of the chronically ill. 

Chronically Ill seems such a collective term given for a multitude of illnesses and diseases ranging in severity and disability. 

I think this is the common misconception of many healthier people, that chronically ill simply describes grandma’s sore hip or uncles bad back and occasionally a friends diabetes or depression. But it isn’t until you open the door and see what truly lies within these labels that you see how deep and painful it gets. It can be shocking!

Today I read the story of a beautiful young lady [23] who has battled trigeminal neuralgia every day since the age of 18. Her tears and pain were palpable. She wanted to give up.  

Whilst I experience flares of TN lasting up to 6 weeks or so, I know what a sheer hell it can be. It’s called the suicide disease because it drives many to suicide, but I feel lucky I only have it in flares! 

But this is just one disease or illness. Many of us have several…

You can’t possibly know or describe the suffering lurking behind these illnesses unless you have been there yourself. Unless you have walked in the person’s shoes. 

I have so much respect and admiration for people and things that I never even knew existed before. It’s why I keep doing what I do and trying to help however I can. 

I hope that my blog and my words are helping in some small way but, truly, sometimes words just don’t come easily… 

gentle hugs, 


Marching On… 

March is always a big month in my life and it always goes by so quickly! 

Yes we deliberately try not to plan or scheduled too much as there are many things that already take up a lot of emotions and energy this month! 

This month will be the 10th anniversary of losing my mother to cancer; Which sadly happened approximately a week before her birthday in March. 

It was my father in laws birthday, before he too passed away to Cancer. And this year is the 9th anniversary of the start of my health decline and eventual medical disabilities. 

Not to forget it is also the month dedicated to raising awareness for Autoimmune Diseases

I take this opportunity very seriously and always do my best to ask people to spread awareness and to reach out to sufferers at this time with messages of support and encouragement. 

I like to think that in the last decade awareness levels have improved and that sufferers are slowly coming out and feeling a new sense of dignity and strength. 

It is a cause that is both very dear and very personal to me, not merely because I am an autoimmune sufferer myself, but I also adore so many fellow fighters and I feel a painful privilege to have met many wonderful people through my own battles. 

March is also the month of my birthday and although the way that I celebrate has changed dramatically in the past 20 years, I still feel each birthday is a chance to take pride in having made it through another year. 

We will celebrate quietly and in our beloved garden but it will be special in its own way. 

Many years ago I used to make a birthday wish that whatever happens in the future that I will be able to cope and be able to change and grow from each new experience. Life has always granted me this wish but always at a price and always in the most unexpected ways. 

It’s coincidence that March is my birthday AND Autoimmune Awareness Month, but if I can ask for one birthday wish then may I ask that you share awareness in whatever small way possible. 

Gentle hugs, 


On The Flip Side 

We are all familiar with YouTube videos of blind people painting or people with prosthetic limbs dancing or running. 

The world is obsessed with singling out people who have achieved something special through adversity and then holding them up in a bid to get all sick or disabled people to follow suit. 


No matter who we are or what has happened to us, aren’t we all allowed  to be different? 

How we deal with life’s ups and downs is our own personal journey and we shouldn’t feel the need to compete and compare. 

If we started featuring people without disabilities or health issues who can’t dance or don’t even try to dance with their fully functioning limbs, in a bid to make them feel less valuable it would not be welcomed. 

If the ill and disabled community started putting up memes about average people not doing anything inspiring and then writing “Be thankful you aren’t this person” the backlash would be enormous and not kind. 

I believe that our expectations of people and life could benefit from a lot more reality and a lot less judgements. Adjusting our understanding to suit the individual, instead of the other way around. 

In the end, regardless of whether you are sick, disabled, well or otherwise, surely we all want to be accepted for ourselves. Our true selves. 

Gentle hugs, 


Doctor Doctor! 

There is much shaming today about people who use Dr. Google as a medical tool. Whilst popular opinion is that we should not be turning to google for medical advice, however no one seems to be prepared to discuss why we are going there… And many certainly seem to be going there!

There are few people alive that have not turned to Dr. Google at some point in their lives. I know I have. And I don’t feel the slightest bit of guilt or shame about it. 

There are a few benefits from googling our health problems that I would like to mention and discuss here. 

Please note: This should not be interpreted as me saying we don’t need doctors or that we should diagnose ourselves. I think most people can differentiate and apply a certain degree of common sense. At least this blogger assumes so anyway. 

So here goes. 

1. Dr Google is always there – no waiting days/weeks/months to be seen by a doctor. If you have an internet connection than Dr Google is available. 

2. Dr Google doesn’t judge! – no matter what topic you might like to research or explore, Dr Google is not going to belittle you or dismiss you. Never have I felt tired, annoyed and embarrassed when I Google a topic. Ever. 

3. We don’t have to convince the Internet we are in pain or in need of help – if I had “…just [tried] and rest more and make sure [you] aren’t overdoing it…” as my very first doctor had told me, then i would not have pushed on further for answers. As I started googling all the things I was experiencing I became more confident that I don’t need to be dismissed and that I deserve to be supported and believed that something was wrong. Very wrong. 

4. More experiences – for autoimmunes around the world, the Internet is awash with more real life experiences, practical help and understanding than any doctor I have spoken to. Ever.  

5. Support – I personally have found greater comfort and encouragement from the millions of annonymous people on the Internet than I have ever encountered from a doctor or specialist. This is a huge help for those of us who have life long diseases and illnesses with no cure. We need help. We need ongoing support. And we need understanding. You can’t get that from a lot of medical interactions out there. 

6. Side Effects and Medications – I have been able to access more practical advice and assistance from the internet than I have ever been given in a doctors office. After being handed a script and ushered out the door, there is little to no follow up or warnings given about what to expect and what to do when you encounter problems or side effects. Our only other option, when we are going through some worrying reaction, is to go off to ER and wait for days to be seen OR revisit your doctor when you can manage to get an appointment! 

Even being able to put my mind at rest that some of the side effects are normal has been a tremendous help when I have been confused and worried. 

7. More information – the internet can far surpass the doctors with the depth of knowledge about a great number of illnesses/meds/therapies/problems/suggestions/realities than any doctor, even specialist, will ever have. I am at the point now that I assume my specialist knows very little about the realities of chronic life and diseases and I must be prepared to do some educating each time I visit. This can be exhausting. 

Many of my doctors seem completely unaware about many of the realities and obstacles caused by having a long term disease… But the internet will have mountains of information on many topics. Often it is a case of wading through a mountain of reading and sifting through what might be useful. 

8. Empathy and respect – it is ironic that an inanimate machine could be a source of accessing more empathy and respect than someone who is flesh and blood and sitting in the same room as you. 

It is a factor that still assounds me. Even 10 years later. Often the medical system is focused more of critical care/emergency medicine than chronic and progressive diseases. Doctors still want you to either get better or go away and chronic illness can often outlast doctors interest and willingness to stay the course with you. Dr Google won’t get frustrated, bored, desensitized or annoyed with you. This means SO much to Chronic suffers. More than perhaps doctors will ever realize. 

As you can see, I have received many personal advantages and much more assistance over the years from Dr Google than any medical experts I have seen. 

The internet has kept me informed, encouraged, aware, connected and more independent than anything I have gained from the medical profession. This is my experience. 

It makes me suggest that the medical profession could learn a lot from people’s reliance on Dr Google and could maybe spend more time and effort asking themselves why people use the internet rather than looking down their noses at it. They might see some of the many gaps and challenges that chronic sufferers face. 

I hope so anyway. 

Gentle hugs, 


A Mothers Lesson…

This month will be the tenth anniversary of the death of my mother to cancer. I can’t believe it’s been 10 years. Some days it feels like 100 years and sometimes it feels like yesterday. 

I wanted to write something meaningful that was a fitting tribute to her memory and yet something that is also relevant to my life today and hopefully maybe even helpful to others. 

I searched myself over  and over for ideas and I became concerned that I would not be able to find a suitable topic. In desperation I went to sit outside on the deck and clear my head. 

And then I remembered this… 

In the decades before she died I remembered her living a relatively secluded life on her farm. During our daily chats together she would tell me which plants were growing, which chickens were laying eggs and the minutia of her daily life there. It was sometimes painfully boring for me at times but it was truly her

As I listened I was reminded that it was so far removed from where I was and what I was doing, that it was almost like another world. And it was. It was her world. Her world on the farm and mine was in the busy city. 

As I hung up and rushed to another meeting I took comfort in the knowledge that she was happily feeding the animals and treading through the farmlands that I had once known. It always seemed so safe and simple there. 

The daily routine that she loved so much felt like a prison to me growing up. I couldn’t possibly imagine what she loved about it or what she enjoyed about this secluded life. 

Until now… 

As I looked out on my garden, admiring the sunshine on the newly formed rose buds and listening to the awkward puppy sounds coming from within the bushes below, I felt peace. 

Here there are no signs of doctors. Here there are no signs of illness. Here there are no people to judge or misunderstand me. Here I have a sense of control of my life. 

There is a simple joy in knowing you are safe and able to cope with the daily demands of life. 

Although she had started out her life with nothing, and I had so much taken away, however, they are both ways of learning how to appreciate the little things. How to treasure the little things. 

I imagine what our conversations might be like now? Now that we might finally be at a common place? 

I sometimes imagine telling her about the plants, the pets, the weather, the things I see on the way to the cafe and how precious it is to enjoy a light moment because life is filled with many heavy ones. 

I think I can finally understand how important it is to find a place were you can leave yourself on every little piece of it. It is in the simple little things that you find the reasons to keep going. 

Little things don’t make you small or not important. It is the little things that help make life feel bigger and it’s the little things that we always miss the most. 

Thank you for always showing me the little things. 

Love you always Mum. 



It’s Not Flare! 

Recently, after months of little to no sleep, I relented and decided to get my joints injected with corticosteroids again. 

I try not to overuse this method because I am aware that every time I use it the benefits may decrease and I am never really sure if there will be any benefit at all. 

Over the past five years I have had quite a few of these injections and I have had a multitude of results that don’t really have any particular pattern or predictor. 

Results can vary, and at best I may have a week or more of discomfort after the injection, and then an maybe an easing of the original pain. For how long? Again, results will vary. 

At worst, I experience months of terrible post-injection pain, and NO real improvement to the original complaint. 

Bruising can also be added to the equation. I have had large bruises cover my hips and hands from the injecting needles, which can take me weeks or months to go down. 

Recently my Rheumy requested that I have another 5 joints injected, including my finger which has developed a painful nodule at the end joint. 

Ideally the injections are administered over several visits. However on this day Dr M (injecting doctor) saw me and noted the pained and tired state that I was in so he suggested injecting three of the major joints. I agreed. 

A decision I now wish I hadn’t made. 

Almost a week since the injections and the after effects have been excruciating. 

I sleep no longer than an hour at a time, if at all. 

My arm and hip are almost immovable. I am taking the most amount of pain relief that I dare with almost no relief to show for it. 

This is the worst reaction to date. 

It is always assumed that autoimmunes need only take a few meds, do some gentle excercise and eat well and they will be fine… Anything short of this must be the fault of the sufferer. But I don’t agree. 

As I sit here, sleep deprived and experiencing pain levels akin to kidney stones or a burst appendix, I am reminded of why I took the injections in the first place. Ironically, it was the hope that I would feel better. 

So for now I am doing what I can and trying to manage each painful moment. Napping when I can. Waiting.

Gentle hugs, 


The Adventurers …

Recently my husband and I went to see the movie Passengers together. 

We were pleased to have an outing together and even more pleased by the special effects and storyline. 

Sometimes movies can make you think critically, and this one certainly made me ponder several things afterwards. 

The movie centers around a couple who, through no fault of their own, are destined to spend their lives in isolation together, traveling through space, without no one ever knowing what they are going through and what they have survived together. 

The central character describes the journey as an adventure and they take comfort and reassurance in the fact that they have spent their lives together, hurtling through space and time. Living in perpetual wonder and with love. 

The similarities were immediatly striking and numerous. 

Firstly I considered the term adventure

Adventure usually describes an unusual experience or event. I think what has happened to our life together has been completely unusual and certainly not how either of us had planned. 

I also realize that not all adventures are always fun and not all adventures end in recognition or reward. Some even end tragically. But they are still technically adventures nonetheless. 

Many times our life with chronic illness and health challenges has felt isolated, unusual, strange and unsure, like the characters in this movie. 

However the couple in the movie make a peace with their lives and their destiny and make the most of the situation at hand. 

I think that is exactly what we have chosen to do and what we continue to do, daily. 

Even though we may not be hurtling through deep space we still feel a great deal of disconnection from the world at large who are still plugged into the everyday minutia of life and firmly focused on the world around them. I.e. Holidays, jobs, careers, success, recreations, media, advertising etc 

We are, by comparison, on our own adventure which few may ever understand and we know that it seems foreign to many regular couples. 

It is almost like another universe here for us where we must contend with things that most couples have not had to face. 

I believe that this life we have here truly is our adventure and even though we will not reach another world, or earn fame for our struggles and unusual events, we still feel proud and grateful that we are on this adventure together and I wouldn’t want to be with anyone else. 

Gentle hugs,