Does it matter?

I have been having some very difficult inner dialogue these days about what matters and what is worth all the difficulty and effort.

Perhaps it is coming from a difficult place this year, with pain and frustration, but perhaps it is also a common place for many other chronically ill sufferers too? Everything feels very difficult and challenging. Existence is extremely hard. Peace and fulfillment can often feel beyond reach.

Recently I spoke to a close friend and fellow sufferer (online) about how I was thinking and feeling, and about where I am emotionally and mentally in my struggles. It was quite a difficult and emotional topic to admit to and talk about.

I spoke about the things I had been trying to do and achieve to help feel useful and also to stay focused on in this life. I discussed the charity (super spoonies) and my blog (Autoimmunitygirl) and I expressed that I have very grave doubts whether they have, in fact, been useful.

Since starting the charity and putting energy, money and efforts into establishing, promoting and developing merchandise etc it has failed to raise any support or money to donate to research. Not even enough to cover its promotional costs. I felt devastated. The reality of it all felt crushing.

All the work and all the effort wasted…

I then started to question my little blog and whether it really does help others, and if it has helped other sufferers unite and feel connected. But now I am asking myself whether my blog really matters either?

I hoped that by writing openly and earnestly about some of these very personal experiences and challenges that have happened to me in the past decades that it would help to educate and engage others who don’t have a chronic illness or don’t know anything about autoimmune diseases. I also hoped it would bring sufferers closer together and help restore a little respect for ourselves and our daily struggles.

The Facebook support groups (chronic groups and ‘Laughter is the best medicine’) that I planned and helped put together I have now had to abandon due to declining health. Has it helped? Does any of it matter?

I questioned that if my own friends and loved ones don’t feel more aware or closer by my efforts, posts and honesty than why should anyone else feel any benefit or help from my writing and advocacy? Most friends and loved ones are either indifferent or seem inconvenienced by what I write. Therefore has it helped bridge the gaps and reconnected us? I don’t believe so.

There was nothing that either my chronic friend or I could say to each other at this point. It felt heavy. Like only the weight of hopelessness can feel.

It is hard enough feeling that as a chronic fighter you have to constantly fight for a purpose or worth in this world without feeling that your advocacy is meaningless too.

Is this a crisis of confidence or is it yet another stage in chronic life? One of declining hope and meaning? I don’t know yet.

I am at a crossroads now, do I continue my advocacy or do I abandon my efforts and simply live out my days quietly and without troubling the world with these topics, causes and realities?

Out of sight and out of mind…

On one hand it would save me a lot of effort, emotions and energy. I could just use all the time and money I have left on my own happiness. It would also allow those I know to stop having to hear or see the pain and difficulties faced by people like me. I could just disappear completely… It’s very inviting.

I have seen many times in life that there is little reward in taking on the role of a martyr or putting yourself out there for judgement or ridicule. Compassion and philanthropy does have a very real price for those with big hearts and kind spirits. Nothing comes easy and often it is the most giving that are the least appreciated. Altruism requires a very special nature that very few possess or show. It appears to be shown less and less in this world, although the world seems to be in more and more need of it as I look around me.

The only reward I hoped for when I went into all this was only to make a difference. I didn’t want celebrity. I didn’t want any other kind of recognition. But I did want results. I wanted to feel like it mattered and something useful had been achieved.

And that is where I am…

I have been asking myself for months now does it really matter? It is probably the hardest thing to face since I first started losing my health!

Gentle hugs,

Trish

What Do You Do?

So many times people hear the words ‘chronically ill’ and imagine someone sat up in bed eating a bag of potato chips and watching soap operas all day or lingering and depressing … However nothing could be more wrong!

I can only speak for myself, however on any given day I am never just resting comfortably in bed (or anywhere for that matter), and it is a rare day that I will be snacking whilst watching soap operas during the day; and neither does my full time carer and husband.

I can honestly say that there has never been a day in which I am not trying to do things or achieve as much as I can, even if it has had to be from the confines of my bed or chair. (Many times I have vacuumed the floor from my wheelchair!). In our home we are either doing something or just physically unable to do it, which will include normal things like eating or watching tv.

Just prior to becoming medically retired from my career I worked from my home and from my bed, and let me tell you they were long hours! Whilst I will always be eternally grateful to my employer for allowing me to try and hold on to my career for as long as I could it was incredibly difficult and it was only a matter of time before I couldn’t keep it up any longer. I recall days of typing reports half blind and vomiting into a bucket beside my bed!

And before my husband made the difficult decision to retire from the workforce he was trying to work 12 hour days and then be a carer for the remaining 12 hours. It was a lot to do and he naturally couldn’t do it all, even though I was trying so hard to assist. There is little flexibility offered to the partners of the chronically ill/Autoimmune/disabled. Many employers today will not hire or keep on staff those who care for their adult partners. Thankfully it seems they are a little more flexible towards employees with sick or disabled children.

I have immense respect for partners and carers and so should the rest of the world. Despite having to help your partner eat and dress, the daily act of seeing your loved one in tears of pain and wanting to give up must be incredibly heartbreaking! I can’t praise them enough!!

Even though we both may have retired from the regular workforce there has not been a single day in which we haven’t had to put in 100 percent and some very long hours. I have always tried to keep myself mentally and physically occupied, as that is my nature. I can honestly say I work harder as a chronically ill / disabled person than I did as an able bodied person because everything is so much harder to do and it never stops.

I recall many years ago how hard things felt and how disruptive it was to the daily routine whenever someone in the relationship had a flu or had sprained/ broken a limb. Or the chaos caused by a virus or stomach bug felt insurmountable! I can only wish for those days now! … How strange that all seems compared to now.

Nothing just stops because you are chronically ill or in pain. Nothing. The world still keeps turning. Housework needs doing. Bills need paying. Groceries need buying, just the same as everyone else, only we are trying to do it all with no sleep, crippling pain, limbs that don’t work and with vision/ balance issues etc… but somehow we try to figure out how to do it… Somehow it just has to be done.

My passion for wanting to advance the cause of the chronically ill came from being thrown into this life and having had to struggle through it, alone. The silent battle that goes for millions of sufferers all over the world needed to be told and awareness needs to be raised!

I was far from happy with the current levels of understanding, the lack of respect and the social stigmas surrounding chronic illness and autoimmune diseases and so I started blogging, introducing Facebook support groups and starting a charity for chronic sufferers out there. Anything I could do I did! I still don’t know how I have managed it all sometimes but I owe a lot to my husband, my dearest friends and my fellow sufferers.

The rest has been sheer stubbornness, nativity and drive.

I don’t believe being chronically ill should conjure up visions of lazy people laying around and sleeping all day. We don’t get pampered and we don’t get droves of people trying to help us and empathizing with us. Often it is the complete opposite!

Many couples with newborns receive much more understanding and support than those who face these debilitating diseases and I don’t think that needs to be the reality.

Being chronically ill isn’t a lifestyle choice and I don’t see myself (or other sufferers) as a drain on society. I paid and still pay my taxes and I volunteered for many years when I was physically able to do so. [We] are no more a drain on society than anyone else facing a major life change. We are still human and worthy of respect.

My husband and I work hard to keep going. We rarely sleep (due to pain and accompanying symptoms) and we have never sought out help (financial or physical) from friends or family in all these years. We have done it all entirely alone.

Occasionally we have been offered help from total strangers and we still find it completely surprising i.e. the lovely lady who comes regularly to take my bloods offered to come by and sit with me while my husband got some much needed sleep. I was moved to tears.

You see despite all the social stigma and judgements, the chronically ill just have to keep on fighting, all day and every day. We don’t have holidays from our circumstances and Our pain. We don’t have paid vacations either. Often we don’t get to celebrate milestones, birthdays and attend parties And yet we still try and keep going… somehow.

This year we have undertaken to renovate our home to make it more accessible and comfortable. My husband and I have been overseeing all this, and we have also been running various business interests, taking care of our young furries AND managing some of the hardest pain and difficulties to date!

So the answer to the question ‘What do we do? … is Everything!

To all of you out there who are doing all you can and managing as well as you can I salute you. Your efforts and struggles are not overlooked by me and it is my sincere hope that one day more people will recognize them too!

As is often the case, it is those looking up from the bottom that see nothing, but those who are struggling to get to the top see the bigger picture.

Gentle hugs,

Trish

A Rough Patch

Probably one of the most difficult concepts to explain to people when you have chronic health issues is that of a ‘rough patch’.

Years ago whenever I had difficult times and challenges I could always take comfort in the old saying “… this too shall pass..” but that doesn’t really have any meaning anymore.

It seems to me that those who have their health and mobility don’t really understand what it is like for chronic sufferers because they will always say to us … ‘get better soon!’ or ‘things will get better, try not to think about it so much!’

The reality is that things don’t always get better. In fact things can often get steadily worse for many of us; myself included. A rough patch isn’t just going to go away for most chronic sufferers and finding people who understand this is quite difficult.

I found that waiting for things to improve only made me feel like a failure when they didn’t! This can spiral quickly into depression if I allow it so I have to be sure to avoid these pit falls if I can.

There are certainly times when things seem a lot harder to cope with (years even) but somehow I had to adjust my expectations and accommodate a new reality before I could find some peace.

This isn’t easy.

My current rough patch has been going on for nearly two years and my pain levels are at an all time high so the ‘… it’s just a rough patch…’ speech isn’t what I need to hear and something I try not to think about.

I am desperately searching for things to focus on and ways to get through this in my quest to accommodate for these new realities.

I believe that I can see why most able bodied people avoid talking to us about our lives and I can even comprehend why they might think my life is boring and/or depressing. Chronic life is certainly a reality that able bodied people rarely comprehend; and it’s not one that many even want to try to comprehend. I no longer expect them to.

It’s always far easier to try and tell someone to cheer up or that it’s just a rough patch. However, when you have chronic health challenges saying that this is a rough patch is the equivalent of saying there is a dry patch of ground in the middle of a desert!

I spoke with my husband about this topic recently and I reminisced about all that had happened to us over the past decades and how we have managed to not only survive these rough patches but even grow as human beings. It seems amazing to us both!

I have often read how there are many different organisms, called extremophiles, which survive in some of the most extreme environments ie deep under the ocean, lava pools, deserts and high altitudes. They not only cling to life but have adapted and flourished. I suggested to my husband that sometimes I feel an immense pride in being able to do what many people would struggle to do and adapt to some of the harshest and difficult challenges in life.

with this perspective in mind I don’t feel inadequate at all, I actually feel incredibly amazed by all those with chronic illnesses (and their partners) and how we have endured some of life’s roughest patches of all!

Gentle hugs,

Trish

Existence

I read a post in a support group today and it struck me so profoundly.

It read;

This isn’t living. It’s existing. When does it get better?

So simple and yet so powerful…

In this short post all the feelings and all the pain are laid out and every person could feel the emotions contained in those few words…

If you have any real knowledge of chronic pain then you will have asked yourself this question at least once. I have asked it at least a million times over the years.

As I studied the words over and over I realized that I felt like I couldn’t answer this person because they don’t know me and they will not really be able to comprehend what I wanted to write without knowing me at least a little better. Perhaps I didn’t want to say what I really thought. Who knows? But here is some of what I really think.

Sometimes these diseases really are just existing and as awful as it seems it doesn’t make it any less true.

Sometimes all the nice words, positive memes and inspirational sentiments can’t erase the fact that it really can be a 24/7 existence of fighting one painful moment to the next for some. There is no guarantee that tomorrow will be any better. It could even turn out to be worse.

Pain changes you and your life forever and there is no one out there that we should look upon as more successful or better chronic sufferers than each other. There are just other people and people with different pain. Simple as that!

As I look around me I try not to berate myself for not being as inspirational as someone else claims to be and I can’t afford to let them make me look down on myself… It would be a quick downhill slide if I did. So I try very hard not to do that to myself while I am suffering enough. That in itself is enormously difficult in this success obsessed world and all its positivity porn. Everyone wants to claim to have all the answers but I have come to believe that they don’t. That’s my opinion anyway.

I try not to tell myself to wait until things improve because what if they don’t? Five years ago I was convinced that things couldn’t get worse. I was wrong! So I try not to imagine what next year will bring.

When I tried to move my leg today and I screamed out with hot blinding pain I became sad that another precious day was being snatched from me but then an hour later my husband walked into the room and showed me a picture of a tree flowering in our yard and peace washed over me like a cool breeze. Momentary peace and refuge… Go figure!

Do I think it’s fair that I spend every waking moment and most nights in unrelenting pain? Absolutely not. I don’t think I will ever think it’s fair. Ever. And I don’t think it’s fair for others who are suffering either. But it’s happening all over the world and most of the pain no one will ever see or comprehend! Not even doctors!!

Do I think it’s fair that people will judge me even though they have no idea what one minute in my body feels like. Nope! Never! But wondering why they do it won’t change one single thing about my day or my existence. It won’t change them either. Its just another thing that has little significance on our survival or existence.

Today my existence is made possible by little things. Pictures. My husband. Corny jokes. Pinterest. The sun shining for a moment. My furry companions. The arrival of a package in the mail. A smile. A cup of good coffee. A whole string of things. Lots of little things. Maybe they total only about an hour in one day but that is something to me. That is existence as I know it.

Survival and existence mean very different things for people in chronic pain and there is no simple ways to calculate how much we can tolerate. Some days it’s very little and some days it’s a little bit more.

How long do we have to suffer like this? I don’t know. And I don’t judge anyone who chooses not to suffer anymore.

I am grateful for the moments when I made it through the crippling pain of it all and I consider each day a personal victory that not many others can ever fathom.

Sometimes when there are no answers we have to rely on little things that can make the slightest bit of difference for ourselves. Sometimes that’s all we can do.

When considering the whole concept of existence it makes me mindful of many different things. For centuries there will have been many countless lives all over the world that seemed to be merely existing. Does that mean that they don’t matter? Often we mistake existing for not mattering. When we feel we don’t matter that’s when we find it harder to exist. At least those are some of my thoughts on this topic. When I feel my suffering means nothing those are some of the hardest times in my battle.

We learned that millions of years ago dinosaurs roamed the earth and we now know that they existed by the footprints they left behind. Perhaps the same can be said of all life? We remember the footprints people make. I recall many of the people I have met not because of what they did or what they achieved but by how they made me feel or the marks they left on my mind and heart.

Today I appreciate those people that help make this difficult life a little more tolerable by kindness and remembering that I matter. Sometimes it can be that simple.

These days I try not to ask the questions I can’t answer and I have learned to be careful to what I listen to and who I listen to because I believe these are the best things I can do while I am trying so hard to exist.

Gentle hugs,

Trish

Launch πŸš€

***LAUNCHING***

We are SO excited to add to the amazing ways we can add awareness and to raise money for research with our little charity!

Today we launch some new products and we hope that you will help support and share.

Unlike other posts and ads you read on social media this is NOT about getting rich or famous, it’s about charity and helping those who struggle every day with chronic illnesses.

# All profits will go to assisting awareness and research!!

Thank you to all those who have helped and continue to believe in us, we truly appreciate it more than we can say πŸ˜ƒπŸ’

http://superspoonie.mymerchstore.com.au/

(Background): For a long time now I looked for little ways to reach out and thank those in my life but there were no cards designed for those with chronic illnesses.

So…

I decided to make my own and I hope that others will find them useful too when you want to thank and send some love to those in your life 🌸

More cards to come very soon!

Enjoy!

β€οΈπŸ’‹β€οΈ

Memories

This is one of the harder pieces because it is about some of the things that means so much to us as human beings; our memories and our minds.

I have always prided myself on having a reasonable mind and have enjoyed many of the interesting and creative things it has allowed me to do over the years! That’s not to say that it has always been my friend but I believe it has always been my best feature.

But then things began to change…

if I am honest I would have to admit that I have always had a less than reliable memory for things like names, sequences of events and some short term memories. I always thought that maybe I hadn’t used the best concentration at times. Recalling some things could be torturous and made examinations the most difficult things to endure. I developed some techniques and work arounds over the years but things still got progressively worse.

I used to laugh at my memory problems but now it is no longer funny. My cognitive abilities are struggling and so is my ability to do some of the things I loved.

A large part of who we are is contained within our memories, and our ability to express ourselves. What people can’t see or ever understand is how autoimmune diseases can rob us of these intimate and precious abilities because people can’t see inside our minds.

These days I can struggle to read, concentrate, recall words, remember events and people, and even find it hard to spell. It’s been a long time since I looked after any financial transactions and banking, hubby does it all and has full control and power of attorney. I find all of these things, like banking and finances, particularly difficult and heartbreaking, so much so that this is the first time I have ever spoken about it publicly.

Today I will constantly have to reread a sentence as I will have forgotten what it was about by the time I have finished. If I don’t write something down it will not be remembered and I can start a sentence and forget what I was talking about by the time I have finished! My husband is very patient and much more patient than me! I go into rooms and forget why all the time. Sometimes I struggle to use the microwave and must concentrate on how to heat my wheat packs.

If I don’t write something down, set reminders in my phone or ask hubby for assistance I would struggle so much more and even forget to take my important medications!

I have done many things to try and redress these challenges like constantly doing crosswords, word games, set iPhone reminders, meditation, take vitamins (even those ones that claim to help memory and brain function), I leave post-it’s around the house and try to remember one thing every day from my past, no matter how small. I feel better knowing that I am trying my hardest every day!

Although there are many things in life that we might prefer not to remember, there are far more that we want to store forever, however when illnesses changes the way our brains function and our cognitive abilities we have no choice about what we can or can’t do… and that is where I am now… and it keeps getting worse.

There are so many things from my younger (healthier) days that I would dearly like to recall when times are hardest and most painful but they may be gone forever now or waiting for someone to remind me of them, I can’t really say for sure. I can only hope for the best.

Ironically when you can’t always recall a lot of the past, and the future is unknown, we are forced to try and make the most of today. And that’s what I endeavor to do. Everyday.

What is waiting for me, as memories and other abilities become harder, I can’t say for sure but I am grateful for anyone who tries to make some happy memories with me each day.

Gentle hugs,

Trish