A New Compass

For the past 10 years I have marveled at what each year has bought us. I have always tended to reflect on these things and wonder how and why they happen. But then it dawned on me…

With each new year we will never know what is coming or who will enter our lives, for better or worse. There is no end to the possibilities of what can and will happen. That’s just life.

This year a challenging and difficult person and situation reminded me what, at this age, I was willing to endure and accept. It surprised me some of the answers that came to me and how quickly they came. Especially now.

Despite being ill and having a decreased circle of friends, I realized I didn’t have to accept just anyone or anything. In fact I feel even more confident that I would prefer to have very few people in my life and yet have more quality relationships.

I had thought for awhile that I needed to accept anything that came my way because my health and abilities were compromised. I realize how ridiculous this logic is and how detrimental it is.

The longer I have been ill the more I have come to value the peace and enjoyment I can get from quality relationships with people and myself. How important it is that relationships aren’t feeling like a burden or one sided.

If I start to doubt where I stand, feel the pressure of demands and requirements on my time and health, feel stressed or not valued then alarm bells will start to sound off. That is my inner voice telling me it’s time to let go. And I listen.

There really is no way of knowing what will happen from year to year. Some years we have struggled financially. Some years we have struggled physically. Some years we have struggled emotionally. Unforeseen things come along to test us and make us work harder to cope and this will never stop until we die.

If we are waiting for life to improve or become less taxing we run the risk of missing life entirely. I once read that life is complete chaos. I agree it is almost completely chaotic but there are some other important things too, like love, peace, laughter, inspiration, creativity, learning and joy.

Those moments are precious no matter how healthy, rich, smart and able we may be.

I feel like life has always tested my coping skills and most times I felt I was failing. But when I look back on what I have coped with, endured and learned from I can’t help but marvel.

I have known a lot of people who, when I speak to them, will spend almost the entire time talking and focusing on themselves and their needs, never really interested in what I may think or have experienced, I used to put up with those people but now I don’t feel the requirement to do so.

I used to feel disappointments, injustices and rudeness so deeply and for a long time, now I am far more resilient. They come and then they go just as quickly. I used to feel the constant pressure to be perfect or be better and better at everything… now I realize that I don’t have to conform and chase such unrealistic ideals anymore.

Has all this growth and understanding come because I have been so ill? I like to think it has been instrumental in me being able to master these things. It has certainly contributed a great deal. There always seems to be some good in almost every situation.

My relationship with myself and my husband has grown and strengthened during the years that my autoimmune diseases have taken over a lot of my life and abilities, and I am more surprised and grateful than I can ever express.

At this time of my life I am better able to see what really matters and use that as a compass for coping with whatever and whoever comes along, and that is something that I am most proud of.

Gentle hugs,

Trish.

The Flow On Effect

Not many people out there will understand what it is like to manage to do things when you have Autoimmune disease/s, except other fighters.

When we get sick or our health declines (slowly or quickly) it doesn’t take away our will to do things with it. That can even grow stronger inside us.

It is one of the hardest facts, and the most common thing that healthy people will almost always take for granted, which is that we want so desperately to be able to achieve things and accomplish goals.

Some of the most talented, creative, motivated and intelligent people I know battle these diseases and yet it is rarely recognized, the tremendous difficulties we face each day; even by health care professions.

Everything we do, or try to do, has a price and a toll. We rarely ever tell people these facts and we do our best to hide and conceal it from the world.

I recently connected with a talented interior designer and artist who also has Sjogrens and SLE. Like many of us who are creative, she battles the fatigue and the pain to do the things she loves. But undoubtedly there is a price to pay for doing these beautiful things and she pays that price.

My artwork and blogging causes pain and vision problems. My gardening causes pain and sun exposure, which in turn takes a long time to recover from. But the alternative is painful too.

Everything that you can imagine doing causes a flow on effect which ordinary people will not be able to conceive let alone appreciate. Most people don’t want to know.

Our renovations, which has been a huge undertaking for us, has also been some of the hardest times for so many different reasons.

In order to change the kitchen so that I will be able to move around it more easily we have had to pack the entire kitchen into boxes that have been piling up in the house. This in turn means that I can’t move my walker or wheelchair around the house, which means that I have been confined to one area of the house. This has been the situation for over a month now and it has been so hard. Moving around boxes has meant the back pain that I had recently undergone spinal injections for has returned, which means I spent another birthday in awful pain. It’s been heartbreaking. Everything has a price. The flow on

Just like a small stream can lead to a mighty river!

Delays in painting has seen me attempting to do some painting myself from the chair and this has been excruciatingly painful to my hands, hips, back and vision. But I just can’t let my husband do it all himself, so I try to push through, and then return to bed in tears, pain, tremor and spasms. One day like this means I will suffer all day and night for weeks, which means extra pressure on every other daily activity, like showering.

Everything has a price. A very high price.

Recently an autoimmune friend spent a day at the beach with her precious family which caused her a week of pain and suffering, but I have no doubt she did it all for the family she loves and for a moment to feel alive. This is why we do it. To feel some life and a little pleasure that so many people take for granted, and we also do it for the people we love so desperately.

My husband and I have often discussed the terrible price I pay for doing even the simplest of things, perhaps we will always have this discussion and debate about how to pace myself better. It is always a difficult topic as the line keeps moving everyday and is so unpredictable.

However much I suffer and struggle, however much I may cry and battle, the truth is at the end of the day I am the type of person who always looks back and regrets the things I didn’t do rather than the things I did do.

Perhaps this is a fatal flaw in my personality and reasoning, and also one of my hardest battles with chronic illness?

I hope that one day I shall find an answer it all, in the meantime I am so grateful for the fact I am not alone.

Gentle hugs.

Trish.

The Project – Part two

When I started out to change and redecorate the house I did so with the best of intentions. It’s important for me to remember this now as things are getting so very difficult, and at times stressful and heartbreaking.

It’s easy to want to give up.

I often think back to my career as a project manager and I have reflected on how much things have changed in such a relatively short period of time since I was a professional career woman. …Tradesmen and contractors have most certainly changed!

I always knew that it was going to be a case of planning, managing and imaging all that would be happening and yet still try to cope with a very difficult and unpredictable body, but I naively didn’t think it was going to be this difficult.

Thankfully we do still have a roof over our heads so there is nothing that can’t be postponed or rearranged when I am at my worst. We don’t have pressing deadlines to meet. Thank goodness!

Although I have found this period to be a highly creative time and even has an element of excitement about what the finished product will look and feel like, it has also been incredibly demanding and stressful.

Why? In one word. People.

I guess I was all too aware of how the caring professions had changed over the past decade but the changes in customer services, trades and supply have certainly changed so much too.

We have encountered the most unprofessional behaviors and mystifying attitudes that I have ever witnessed and as a result we have had to attempt to take on a lot more things ourselves. Things we didn’t imagine having to do.

I have to say that being placed back in the world of people again has been a strange experience. I have felt even more different, disconnected and removed from the outside world, which is a very unexpected result. Especially to this degree.

There appears to be no more customer focus, work ethic or motivation out there anymore. Sadly. Tradesman continually never turned up, not organized themselves, not consulted with us, not listened, not shown any respect or courtesy, but, always demanded payment up front and on time… It’s unexplainable.

There is this pervading sense of entitlement in almost every sector now. At this time it is like you must do everything to please everyone, regardless of the personal costs. It seems things have grown much worse out there, overnight.

Each day that we have had to deal with the most appalling standards of behavior I have also settled in each night to check social media only to read how the chronically ill should be more positive, more motivational and much less needy!

I am truly lost for words.

The irony is that those with less painful burdens and challenges are often the most self absorbed, self involved and entitled. But why?

I have been left with such a mixture of feelings from these experiences but I also know I have learned a lot too… I should say I am learning a lot.

A quick look around has shown me that those of us with chronic illness have nothing to be ashamed of and we do an amazing job at coping and rarely burden ourselves on others or take others for granted; certainly not as much as the average person out there does anyway.

We have nothing to apologize for and certainly don’t deserve the labels that many out there have imposed upon us.

A quick look around at the world at large has helped relieve me from this impression that we do work just as hard, if not harder, than the average person on the street, and I am prouder than ever of my chronically ill and Autoimmune brothers and sisters… More than words could say.

When the house is finished people may see the changes that have taken place, but they will never know the true cost and hardships encountered to make even the smallest of changes. The real hard work and suffering will only be visible to my husband and I, and it reminds me yet again of the ordeals those with illnesses go through to achieve anything in this life.

I am so proud of you all!

Gentle hugs,

Trish

The End in FriENDships

We never forge a friendship thinking that it has an expiration date, but sadly many do.

I don’t think anyone ever thinks about endings or we couldn’t truly put in the time, effort and emotions needed to become a friend. However, sometimes they can run their course and fizzle out, and sometimes they end under sudden and sadder circumstances.

However I believe that they should always be mutually beneficial and satisfying or else they can not and will not survive.

Which ever way a friendship ends it isn’t a nice experience… so how do we survive a friendship ending?

Firstly, I don’t care what age you are, it’s never nice or pleasant ending a friendship, especially one which hasn’t been as rewarding as you had hoped.

Today as I sit here I realize that the only way I have been able to end a friendship is in a way that is true to my nature. Ie. As a caring person, I will be inclined to let go with the intension of making life better for both parties… I wish the other person well, and I will try to remember the good and happier events. I truly hope that they will find happiness in their future.

Often it isn’t even necessary to say goodbye to some friendships as it can just seem as though it trickles out of its own accord.

I favour the method that has the least amount of drama these days because I just don’t have the energy to spare.

I have become better at not doubting myself and questioning my worth as I once did when friendships ended. I now tend to see it is as another life event and if it was truly meant to be it would still be thriving.

I guess it’s more of a “it is what it is…” mentality… We can and will go on!

Oddly enough, as I grow older the friendships that were made as a younger person have seemed to endure longer and are still alive compared to those made more recently. I guess older friendships have had far more opportunities to weather storms and to develop.

I also find that I no longer equate my value by how many friends I have and how popular I am. I find now that a handful of true friends are far more rewarding than the constant attention and validation of a multitude of people.

Friendships are never meant to be a popularity contest but rather a true appreciation of who we truly are. Including our flaws and challenges too!

As I have learned to truly accept and appreciate myself I no longer need others to fill that gap. Their endorsements are no longer required but a mutual respect and connection is now the foundation of a stronger and longer lasting bond.

When I first became unwell It was easy to feel that my friendship was no longer worthwhile and valuable and I felt I would have to accept anything that was offered, but since my confidence has begun to slowly return, I have been able to better gauge my own worth, probably now more than ever before!

In the past I felt as though I was always giving and trying to please others, but when you find yourself struggling to manage every moment of your life you are far less inclined to cater to everybody’s demands and expectations.

I am reminded that it is truly possible to make friends as a chronically ill person, and we don’t have to settle simply because we have unpredictable and challenging bodies.

I believe that if I had to end my life with only one true friend, then I would be completely happy and appreciative of that one special person. Always.

Gentle hugs,

Trish

How It Happened

It’s always so surprising what people will say, and how they will recall an event after it happened.

Generally they will tend to say something that will fit their own beliefs and narrative. But is it the truth? Is it what really happened?

Recently I read an article written about someone who had committed suicide and there were comments by various people about what led to the death of this person, as I sat and read about someone I don’t know it occurred to me what is the real truth behind the events? Does anyone really know? Can anyone really know?

Think for a moment about something that you might have done years ago, now remove your own knowledge of the event and assume that of a bystander. What could they have thought about your actions? How would they describe them, given that they know nothing about you and what you were thinking at the time? It may be a very different story and explanation entirely.

But that’s the human condition. Isn’t it?

Things we know nothing about happen all the time, and yet we try to form explanations of them based on our limited understanding of the world and humanity.

Last year we lost a fellow Autoimmune fighter due to complications caused by their disease. I didn’t know the person intimately, only online, but I was still saddened. I, like others, felt a sense of loss. This person had shared with the group of online strangers their daily physical and emotional challenges, because they knew that these strangers would understand more than anyone else would. More than their parents. More than their partner. More than their closest friend. More than their doctors. These invisible, unknown people had a better understanding of what life was like than those physically closer to them.

That struck me as very sad.

One day it will be my turn. One day I will pass away and I am sure that many people will have their own versions of what my life was like.

I am sure comments may be passed about my battle with long term chronic illness and depending on who the person is they will have formed their own opinions of what that meant for me and my life.

Some may say she didn’t try to get better. Some may say that they think it was the drugs that I took which caused problems. Some may say it was because she had isolated herself that caused my demise. Some may even believe ‘she was a hypochondriac and couldn’t possibly have been that sick’ and take comfort in the fact that they didn’t listen to my numerous calls for awareness.

Others may even believe it was because I didn’t eat enough kale or some other wonder food…

I have resigned myself to the fact that perhaps very few will ever accept the fact that many chronic sufferers will pass because of this one plain truth…

There is currently no cure for Autoimmune diseases.

People will believe and say what they want to, but I hope that in my lifetime I did my best to help remind the world that we need cures and not blind accusations.

Gentle hugs,

Trish.

Putting Yourself Out There.

I believe this piece can easily apply to anyone these days, sick or well, and it isn’t an easy topic to tackle. But I will do my best, as always.

I find these days it is increasingly difficult for people to put themselves ‘out there’ due to the amount of people who seem to take offense and issue with every little thing we do or say.

What is happening to us as a society??

Each picture we share, each comment we make, each detail we reveal about ourselves seem to motivate people to not only form their own opinions (even if they don’t have a clue about all the facts or factors) and to direct them at you.

My husband and I discussed this in depth and he said he feels the same pressure and confusion every day now. Every single call, every single exchange and every single transaction is fraught with potential problems. He says he no longer wants to share anything with anyone anymore. It is that bad.

Friends, family, business interactions and the general public are hostile places and potentially painful experiences.

Sadly, I agree with him.

What has happened to us as a society that we feel entitled to pass judgement on each other’s every move and decisions?

My mother once told me that in order to stay sane in this world you have to be prepared to keep to yourself and let people’s comments slide off your back. Build a protective shell around yourself and be prepared to be alone for most of your life.

She lived a very isolated existence in her later years, avoiding social situations, businesses and the general public. But she was happy to plod along in her garden and on her farm, alone. She was content with fewer and fewer people in her life and I now understand why.

I didn’t want to believe her back then and what she told me about people in general, but I absolutely do now.

Things have gotten so bad that my husband and I agree that we should not share anything with anyone anymore and keep to ourselves; even more than we do already.

I can’t help feel a deep sadness that things like respect and encouragement are going and social interactions are becoming more and more like a blood sport.

The days where everyone feels entitled and empowered outweighs responsibility and compassion.

Time will tell if this way of interacting will be more peaceful, less stressful and far less disappointing for us, but I can’t help feeling sad that this is where we are at in 2018 and this is what we are forced into becoming.

Gentle hugs,

Trish.

Projecting.

The last 12 months have been some of the hardest times in my battle so far. I felt like I was slowly losing so much ground and that progression was taking me down emotionally and physically.

It was becoming harder to watch the world go by and wonder where my downward spiral would lead me.

I had become more and more house bound and very rarely got out anymore. My home has been my refuge and my confinement.

I felt particularly saddened by the fact that other people’s lives where always changing and progressing yet mine seem to be the same four walls and the same routine over and over.

It was all becoming too much. I needed something to change. To change for the better. Any change might be helpful to where I was… but what?

The drugs hadn’t stopped things, the diet changes were not the cure, meditation and positive thinking was not giving me back the functionality I was hoping for. Doctors were not offering me reassuring words and things were becoming more and more complicated with each new specialist appointment. What could I do to change something for the better.

Answers were not jumping out at me.

My charity was operational and I had done all I could with it. My blog had been going for years and I even started questioning whether it was helping anyone or achieving what I set out to do…

Since I couldn’t seem to be able to control anything in my life and predict where anything was going I decided to look around me and I wondered what I might still be able to do.

As I sat in my bedroom one day I realized that I had seen the same walls, the same colours, the same floor and same lamp for nearly 10 years now… Perhaps I could change my environment?!

My imagination started to take flight and even though I was still in terrible pain and battling so many different things on a daily basis, I started to find some new joy again.

I went to work researching what I would like to do and what I could do, this soon turned into a complete redecorating project!

I became determined that my house would be transformed even if I couldn’t be transformed. It would be refreshed, renewed, revived and reloved!

The work began several weeks ago now and it has been giving me the ability to look forward to something. To be inspired and to feel different.

As I sit awake at night, body suffering and tortured, my mind is painting walls, hanging my art, and laying soft furnishings here and there. It is such a breath of fresh air in the midst of this battle.

The changes I need so desperately will become changes to my home, my nest, my sanctuary and my refuge. An improvement in the outside world, despite the fact that my physical body can’t seem to achieve it.

As I look through paint samples and seating options I feel an emotional lift that I have long needed. After years since retiring as a Project Manager I have a project again!

The scented candle burning beside me now is making me feel excited and although I have been too sick and in pain to see some of the changes taking place outside my bedroom, I feel excited about what it will all become.

Feeling excited is something I didn’t think I might feel again and I intend to savor every moment of it.

Gentle hugs,

Trish