Building The Dream Jo

Dreams can be wonderful and amazing things and I confess that I have been an avid dreamer for all my life. I have often lived in the alternative reality that my dreams provide and this has been even more so since my health battle took me over a decade ago.

Dreams and goals are incredibly personal and intimate things and seem to play varying roles in some people’s lives ranging from mere whimsy and entertainment to highly focusing and motivating. I have evolved into the latter.

I didn’t think I would become this person I am today, due of all that has happened to me over the past decade, but I have become more desperate to make my goals and ideas come to life. Why? That’s the question I have been asking myself more and more lately.

Having plans and goals can become obsessions to people if they find themselves needing change or something to focus their efforts and imagination on; and especially if the current realities are particularly difficult or mundane.

Whilst most people may dream of taking a holiday, finding a soulmate or of career advancement, I find myself ‘locking on’ to ideas and goals in order to pull through some of the worst emotional, physical and mental times and to find hope and respite in them.

Today my goals and plans for the future are like a beacon to see my way through my day to day struggles. So vividly can I see my goals that I can ‘feel’ them, ‘taste’ them and ‘breathe’ them. I will then start planning my steps toward them and I don’t give up until I absolutely have to or they become impossible to reach; even then I can tend to hold on.

The ‘gift’ of dreaming and planning can be a very a difficult one to bear for those of us who have physical and medical challenges. They are infinitely more harder to reach and seemingly more heartbreaking when they can’t happen.

My dreams are such a big part of me and so intimate and personal that I don’t share them with just anybody and there may only be one or two people who will ever know what I am putting my heart and soul into. I will zealously guard them and work hard towards them under the most painful of circumstances and physical pain.

The past decade has been a long series of trials and errors with my goals to see what I can do and what I can make happen. Many obstacles are placed in the lives of the disabled, chronically ill and health challenged that it can be heartbreaking and lead to desperate many times, it is something the able bodied constantly take for granted.

Things that are seemingly easy for the average person can be Herculean to us. When your body constantly throws you into a state of pain, frustration and torment even the simplest of goals like gardening, shopping and even walking can be a huge physical challenge!

My plans to travel or study have constantly been cancelled by flares of pain or increased disability. There have been so many times that even the plan of going for a drive seems completely out of reach.

Over the years I have recognised that my type of personality does not take these shortcomings and set backs very well. I will become very frustrated, more determined and at time’s even angry at myself when I can’t do the things I have set myself. Failing to reach some goals has caused me indescribable boughts of anguish and torment. I wish it didn’t and I try to process and work throughly things better but I am far from accomplished at this but I Am trying.

As a former project manager I am a constant planner and designer of ideas and goals and I approach my dreams as I did the projects in my professional life. I will construct the steps towards them and assign timelines and resources towards completing them. I will also push myself to advance these steps and devise alternate solutions in order to finalise them.

Those people who have been supportive and instrumental in helping me achieve my goals have been incredibly important to me and I treat their assistance with a life long gratitude and devotion that they may never truly understand. It is with this in mind that I first realized my feelings for my now husband when he began taking on my dreams and lending his help to getting them.

Conversely, for those who have endeavored to stop or block my dreams and plans for future happiness I have very little patience, tolerance or time for them.

This topic presents a particular difficulty for me as I have always strived to be a relaxed, zen like personality who tries to weather the storms of life in a resilient, even humorous and accepting way, but this becomes very difficult (and at times impossible) when it comes to the subject of my dreams and hopes.

Dreams and hopes are the fuel to my machine now. They are the stuff that drags me out of any reactive depression i might have to my circumstances and they are the fire in my soul that gets me out of my sick bed. I owe my life to them and my future to the pursuit of them.

I have also surprised myself with my level of ingenuity to get things done when faced with health challenges and circumstances. In order to overcome various roadblocks I have had to reach deep into my mind to discover solutions and work arounds. No small feet when you are unable to move or see and incredibly weak!

For those of us who have battled through our health challenges to do even the smallest thing we have hoped to do or have striven for, the rest of the world will never comprehend or recognise what it takes. They can even undermine the enormous strength and effort needed. It is for these reasons that I have always kept my dreams and plans to myself and kept chipping away at them.

Building dreams for those of us with health issues and physical barriers is so hard and, at times, heartbreaking. Harder than many people will ever realise. But without these things in my life I am certain I would not be alive to write these words or to encourage others to never give up on theirs.

Gentle hugs,

Trish

The Growing Problem

Recently I have had some more revelations and perhaps the backdrop of a very difficult and emotional year has helped some of these discoveries come to life. Perhaps? However, what these revelations will be worth to me remains to be seen.

It started with me thinking that for as long as I can remember I have marked off each year with the vain hope that the next year would be better. The problem is though that we have limited years left to us so what can be done with all these wasted years and how can the future be any better?

I recall when I was teenager how I felt happy that I was no longer considered a child and yet being a teenager was really hard too. As a young adult I was glad that I was no longer a teenager and had I had more independence and control of myself. When I entered my thirties I was glad that I was done with my twenties and felt a little more confident in who I was.

This trend seemed to continue throughout my life until today I find myself approaching middle age, looking back on what was and worried about what is to come.

I like that I know myself better as I have emerged from each struggle, difficulty and pain but I am also worried that I haven’t done what I wanted, been what I should have and have what I think I want.

And time is running out to change things.

Perhaps we all feel like this? Perhaps it’s just me? I see more mistakes and losses looking backwards and I don’t see where the remaining years can take me. This can feel deeply saddening, sometimes, and other times it can feel confusing. Sometimes both.

The problem is that at my age and place in life everyone seems happier and more content than me. Everyone seems to have answers that I don’t. Everyone seems more at peace than me. Perhaps that’s just my perception ?

A quick glance at some memes and motivational tidbits and we are told to remember to seize the day, be all you can be and do what we feel inside, but how realistic are these things? I have been told these things by people who also have told me how terribly difficult their lives are and how awful their jobs are etc.

So are we any better off at 50 than we are at 15? Instinctively I want to say yes! But I am not sure it’s true anymore. You see quite often I feel like a 15 year old trapped in a 50 year old body. And I think on some deeper level I always will be no matter what age I am.

To me it seems like it is human nature to want to believe the best is yet to come, to believe we are nearing some sort of Nirvana type state the older we get, but I think that what we see is simply the recurring pattern played out over each decade and being replaced with new worries and concerns.

When I was 15 I didn’t know a thing about life, or anything else for that matter, and today is no different. I am still as clueless as ever but I do know a tiny bit more about myself and that’s all I feel I have gained over the past 50 years and it feels incredibly soul crushing.

I see young people look at me as either a great inspiration or a cautionary tale for their own lives, depending on how they see me. When they see me as a chronically disabled person they look as though they don’t want to be me just as much as I wouldn’t want to be them either.

I think the truth in all this is that the price of living means you forever swap one set of problems for another. We swap different challenges for others. And so on and so forth.

There is no pinnacle of the mountain and no marching band when you get there. The cost of living is to forever struggle. Forever to look forward and backwards.

It was only then that I discovered the one ray of light in all this. It was only then that I discovered what could make it feel a little easier in the midst of such confusion and worries. The realisation that sometimes we meet someone along the way who sees our struggles, feels our pain, shares our lives and lights our fires to make us keep going one more day. They know us and feel is on a whole different levels and help us see ourselves.

And, for me, that’s what makes this life worth living.

What can I say?…

There are a few times in life that the average person doesn’t know what they can or should say to someone. Words just don’t seem to be enough and they don’t adequately explain how you are feeling at a time in our lives. For example, when someone we love dies, when someone we care about is going through a very difficult time and so forth. Not knowing what to say occurs primarily because the words don’t seem to exist to describe what you are thinking and feeling at the same that time and it just gets jumbled up.

These situations happen to me all the time since my health worsened over a decade ago.

So many times I find myself unable to explain to a friend, loved one or doctor all that is happening to me at any given time, despite them asking me to describe it. So much is happening at once that it can become indescribable! Most people have experience of some things for which they try to compare and orientate themselves with but they are truly able to understand the inadequacy of their yard stick.

It’s not their fault.

It can at times even feel insulting if someone tries to compare something with another thing that is vastly different. For example, I recall how many times people will compare their fatigue to that of the chronically ill or autoimmune. It is like someone comparing the ocean to a swimming pool. Yes they are both a body of water, but they are hugely different. Anyone who has never seen the ocean or experienced the ocean will always refer back to the swimming pool for their reference point.

And this is the problem.

Last night I was asked by a well meaning friend to tell them all that was happening to me and what I was going through. The enormity of the task overwhelmed me so I declined. It would be too hard for me to describe and too difficult for them to try to understand. So I choose to spare people the difficult task of even trying to understand. This is especially true if I doubt the sincerity of their request, and sadly their are many that ask who don’t really want to understand but to simply belittle or downplay.

I remember a woman once told me “I know what pain is because I gave birth!” I am sure she did endure terrible pain while giving birth to her child, I have never tried to convince anyone that they don’t have their own definition or experience. However no woman I have ever met has had to give birth while feeling like their joints are on fire, their vision has gone, they can’t move their arms, they haven’t slept for a month and they have lost their jobs and will never work again!

Although my days are a battle, the truth is the battle is constantly shifting and changing. As more and more parts of my body and system has given way to the effects and damage that my own immune system has done to me, more and more things are added to what I must contend with. It is progressing and changing with every year. I can never get acquainted with what is happening before something flips and changes again.

What started many years ago with sore joints, fevers, aching, tiredness, headaches, occasional vision issues, fatigue, malaise, pain, memory issues, blurred vision, numbness, bowel pains, nausea etc is now effecting every area of my body from my hands, to my feet, from my heart Rhythm to my breathing. Everywhere. At any time of the day or night.

Being able to simply walk to the bathroom, go for a drive with my husband and sit in my garden is an absolute achievement for me! Doing my own hair and makeup and going somewhere is something I must remember all year. Laughing and feeling normal again is both beautiful and a sad reminder of the life I once had.

Aside from the physical pain and difficulties people like me endure we also have the additional pain and struggle of the emotional battles we are fighting. Everything from the grief of losing our former selves, to the cruel denial of the world for what we go through. The depressing effects that pain, frustration, anger, grief, futility and loss has to the embarrassing, agonising, insulting, annoying, callous and ridiculous assumptions that the world makes about us… And everything in between.

Sometimes even our own fellow chronic fighters can turn on us and belittle us by attempting to be more virtuous, more self righteous and doling out ableist rhetoric and virtue signalling to those who have already endured enough. It is I’m comprehensible at times. We often find ourselves retreating inside and away from the world only to add loneliness and isolation to the list of challenges we endure.

Some of the worst things that these illnesses do are not simply to our bodies, lives and futures but also what it does to our connections, our relationships, our friendships and our bonds. It can make strangers of our closest attachments and put such distance between the most loving relationships. Watching a relationship break down over changed circumstances, lack of understanding and difficult expectations is truly tragic but has become the norm for so many of my fellow Autoimmunes and including myself.

What can I say about it all? What can I tell the people I love, the ones I care about and the rest of the world? I really don’t know what to say most of the time… but I keep trying.

Gentle hugs,

Trish

A Believer

Many years ago my mother told me something that has stayed in my mind ever since the day she said it. She said “…people will believe whatever they want to believe…” She went on to say that no matter what you do or say it will mean nothing to them. People were always going to believe the story or the version that they most wanted to be true.

She was right.

As a person that adores evidence and reasoning I found this very hard to accept and I wanted to believe that she was over exaggerating human nature. However, no matter how much I wished it wasn’t true it didn’t change the fact that, on the whole, it is absolutely spot on.

People will believe what they want to believe and what they deep down hope is true. It seems human nature to put our hopes and needs before what we can see is true. We interpret things that best suits our own world view and proves us right.

Because many things in life are not always black and white it allows us to paint the greys the way we want to. See things with the bias and intention that best suits us. Argue in favour of what best helps our cause or plight.

It is for this reason that I no longer try to correct peoples ideas or misconceptions about me. It is a futile and pointless exercise. If someone wants to believe something about me or interpret what I have done or do in a certain way then I no longer try to explain things from my perspective.

I used to work extra hard at proving I was better than how some people saw me. I would offer as much proof as I could of my kindness and worthiness. I would bend over backwards to try and please others and have them like me. Not anymore.

No matter who the person is in relation to me, if they choose to see things through one view or they really don’t want to see things from my perspective then I feel no obligation to try to dissuade them. If they are invested in seeing me one way or my actions in a particular light then I am able to simply move on from them.

Perhaps the worst thing about how I responded previously was that I allowed peoples doubts and anger to turn me against myself. To doubt myself. To hate myself. My lack of confidence and self validation left me am easy target for anyone and everyone. I am sorry I allowed it for so long and I have had to work hard to correct it.

As someone who has health battles the opportunities to doubt myself and to turn on myself are constant. There are more people who will stand in your way, look down upon you, doubt you, ridicule you, mistrust you, trivialise you and shame you than there are people who will believe In you or support you. There are even fewer who will love you and stand by you through it all. These are also the factors that has led me to this point in my life and in my self belief.

I have had to stand up to and withstand the words, the hurt, the doubts, the ignorance and the selfishness of so many that it has shaped me into the person I am today and given me the ability to push aside those people and turn away from their beliefs. No matter who they are; friends, family or loved ones.

The online age we live in allows more and more people to share their opinions and comments about us without even having ever met us or know who we are. People are even more committed to putting others down in a race to seem better or more virtuous. It’s more and more competitive out there and empathy is not easily found.

I recall the example of one person who was committed to trivialising my struggle and making me appear as though I was simply looking for attention. I recall feeling so hurt and outraged by it all. I was especially disappointed because I share so little of the realities of my day to day struggle (even with my doctor!) that their actions and motives were so abhorrent to me. How could anyone do the things this person was suggesting? Worse still, how could anyone think the things that his person was thinking? I realised then that people who look down on us and believe the worst have a vested interest for doing so.

So, today, I remind myself what my mother told me many years ago about human nature and I also use this as a lesson to try to always think the best of myself, no matter what anyone else believes. It’s not for me to change peoples minds about me but for me to care more for my own well being than anyone else does. When we give credence to these people we take from ourselves.

For those out there who also struggle against the words and actions of those who look down upon you or judge you unfairly, I hope that you will also realise that you can either spend the rest of your life trying to change their minds (and you wont) or you can spend your life being more comfortable in your own beliefs.

Gentle hugs,

Trish

The Perfect Couple

It is my opinion and assertion, after almost 50 years on this earth, that there is no such thing as a perfect couple and, moreover, there are plenty of happy marriages out there who will often disagree, debate, and at times even hurt each other with something they do or say.

It is a popular opinion that only a mate that never lets us down, never disappoints or never makes us examine our relationship or reset our boundaries are the ones worth having or that are built to last. I know I certainly thought that because of everything I read and watch on tv/ movies always told me so.

I believe that they are all very wrong.

Today I now see a good marriage as one that does not deeply harm us physically or emotionally and one were you believe that life with your partner is far better than life without them.

I also used to think that the longer you are married than the closer you must get to perfection and bliss. Once again I have had to completely change my mind about this and be prepared to see things very differently. I know plenty of couples who are married longer term and who still fall out, argue, lose their temper, aggravate each other and so on.

It is not a straight line from marriage to eternal bliss and it has nothing to do with your age or how long you have been together.

In fact, the longer that some people are together the more that they can become set or fixed into certain behaviours and become unwilling to change them; even to help their marriages. Behaviours become habits that are hard to break. But are they still viable marriages? I think so.

The fact is that even as we get older we can change our perspective about things and about life as a whole. What made us happy years ago can no longer float our boats. Personal growth can be the most wonderful thing about this life but we forget that in order to grow in some areas it can take some very dark times and awful challenges. These things can happen inside and outside of a marriage but they still effect both parties.

We can never know or predict what is going to happen in life and what is going to happen in a marriage and although there is a huge part of me that likes to control and predict how and when things will happen it has never turned out the way I thought. Ever.

I never thought I would be this dependant upon another human being and lose this much control of my body and abilities. I hate it. My husband never thought such a thing would happen to me either based on the woman he first met.

If you had asked me 25 years ago if I would ever marry I would have said NO. If you had asked me if I was likely to become sick like this I would have said NO. If you had asked me if my marriage would survive a situation like this I would have said… absolutely NOT.

Yet here we are.

No one can ever judge or truly know the worth of a marriage as an outside observer. There are far too many factors that are never seen nor felt by anyone outside. We lack context and the subtleties of feelings and experiences when we try to see a marriage we are not in. But I have also realised that if you have to justify or rationalise your marriage then you are, perhaps, not truly enjoying it or feeling the benefit of it.

There are plenty of things about my husband today that I would dearly like for him to change. There are plenty of things that take me to the brink of my tolerance and sanity (snoring comes to mind) and there are many times that I have even considered leaving him because of how he has hurt my feelings and disappointed me in some way and I can only assume the same is true for him. The fact is that his good points, good intensions, love and support far out way his bad points and together we continue to try to do the right thing by each other and ourselves. I am sure he does the same for me when I have tested his patience and endurance.

I am not married to an overly romantic man who gushes and writes poems dedicated to me. He often can come across as indifferent. I would dearly love him to be more demonstrative and validate me and my worth more often. It would be wonderful. But that doesn’t mean that there is not love and care in some of the other things he does and says. I have realised that this means that I must look for signs of love and devotion in other places and in less obvious (and cinematic) ways.

I see the love and respect that comes from waking up in the middle of the night to rub my joints, change heat packs, bring my meds, take me to the bathroom and listen to me tell him again that I can’t take it all.

I give my love by accepting that he will never understand the pain and sacrifice I go through, and the challenges that doing any small thing for him can present me (like cooking a meal for him).

How we show love and express love seems to change over time too and stops being things like chocolates, romantic dinners, jewellery and perfume etc and starts taking on more substantive things, like loyalty, honesty, commitment, laughing together, crying together and sharing our most inner thoughts and secrets. Only someone who loves you can watch you age and change physically and yet still see you as the most beautiful person they have ever met. Only someone who loves me could see me struggle to move, see my face drooping, see me needing help to eat and see my face swollen from crying and still think that they have a precious gift laying beside them every night.

One thing that I can honestly say about my marriage that we both work hard to do l, despite all the things we have been through and all the arguments and problems we have encountered, is that we have agreed to put aside whatever is happening or whatever has been said and cuddle in together each night, even if it may be the last thing we want to do in that moment. We both deserve to sleep as best we can and rest as much as we can before taking on the new day and looking with fresh eyes at the situation.

As yet this rule hasn’t been broken.

It seems human nature that we may want to keep improving the way our relationships look and feel and there is this naive belief that they can become better and better over time, but it’s become clear to me that this isn’t true and some of the most important changes are in the way we change and how we ultimately value the relationships we do have.

Gentle hugs,

Trish

A Love Letter

If you never had much confidence or belief in yourself before you became chronically ill you will have a very difficult time after you become ill. Very difficult indeed!

Speaking from personal experience, the struggle has been soul destroying at times.

Alternatively, battling these demons constantly can also make any victory feel monumental and that is what happened to me recently.

Having had the worst month physically, mentally and emotionally I felt completely destroyed and there has been very little comfort to find anywhere I searched. My self esteem and confidence hit another low and it was hard to think of reasons to go on.

For the chronically ill it is a constant battle to see yourself as anything resembling valuable and worthy, that is what the struggle is like for me anyway. During these times I avoid looking in mirrors, I don’t speak much and I try my best to complete any task with as much care and attention as I can in a bid to feel useful.

Tue emotional void feels limitless and I can’t help but remember every hurt, rejection and mistake over my lifetime. Why? I wish I knew. Perhaps like anyone else that may experience reactive depression from time to time, and especially during a series of hard battles and ‘life events’, I start picking the bones of my tortured soul in a self harming manner.

I try not to.

As I recall all the times that life and people have left me feeling sad, lonely and rejected I happened across a picture I had drawn some years ago. I sat and stared it and somehow I didn’t believe that I had drawn it and it felt like I had found from someone else’s studio. I liked it and in that moment I was quite surprised by the talent I had shown.

As I studied it more I started recalling that I somehow after all the things that have happened to me over the past decades I started to be in awe of myself for surviving them and for getting to my feet somehow.

Then, like a bolt of lightening, I felt a new idea explode inside me and it lit up my dark emotional sky. I have often considered myself very much the lesser person in a relationship and unworthy. I would constantly accept far less from my partners and would be grateful for the scraps they threw me in love, devotion, attention and loyalty.

I have often been reminded how lucky I was that my husband stuck around after I got sick and how he could have left me like so many partners had done in the past but now I thought that perhaps if my husband had or did decide to leave that he might lose something very special indeed.

I began to explore a thread of ideas which allowed me to identify some other things about me that I have seriously overlooked. For instance, how loyal, hard working, creative, inquisitive, funny, authentic, good hearted, romantic, compassionate, empathic, feeling, artistic, flexible I was. How I have done as m uh as I could for my partners and also provided them with a good income and strong problem solving and willing to negotiate the rough roads we encountered right along side them.

If my husband left then he stood to lose something unique indeed and if he did leave, like others before him, I believe that they would suffer a real loss greater than I would endure because they would have lost someone that didn’t give up during hard times and knew how to treasure the important things in life.

I was once again reminded that we can’t make people choose us, we can’t make people appreciate us for all that we are and all we try to be and do. We can’t make them treasure us and work just as hard to make us feel loved as we do for them.

It is always possible that some may prove unworthy of us, abandon us, not appreciate us, forget us, waste our time and not ever see us for all we are and all we do. But it is worse we we do that to ourselves. It is much much worse.

I may always need to work harder than most people to love, even like, myself but it feels sometimes that self esteem and confidence is like a muscle that needs to be exercised in order to grow stronger and provide strength to the rest of the body.

It is important that I fight to set boundaries and give voice to my needs and expectations of my partner. I am allowed to want these needs met and to accept less would be the ultimate betrayal and I am allowed to struggle with self esteem and low confidence whilst I am doing what I can to improve it.

Very few people out there understand the pure torture illness puts us through emotionally and how it eats away at your self belief and self worth everyday like a cancer. Perhaps Autoimmunes need a little extra TLC from our loved ones and friends, but if they truly love us and care about us this should not be a inappropriate thing to ask.

I have to believe that anyone, and I mean anyone, who deserts us for struggling because of these chronic illnesses then they are doing the right thing by removing themselves from our lives.

I don’t remind people to show compassion or scold them for avoiding having to show love and compassion to me, I am simply beginning to recognise it as a failing in them and not me and I want to become the type of person who can begin to be able to write love letters to myself when I need it.

Gentle hugs,

Trish

Perceptions

During times of hardship, pain, relapse and stress the chronically ill are placed in a very difficult position and judged much more harshly than any of their healthier counterparts.

For example, if a chronically ill person is in pain and they have been battling the unrelenting agony for hours, days, weeks or months on end, if they should slip and give way to anger, remorse or frustration they will be scolded and rebuked much more severely by those around them and can be met with “don’t yell at me! You are always angry!”, “you need to get on top of all this and change your attitude!”, “why should I look after you or help you when you do this?” Or “it’s all your own fault you are suffering!” Our actions can be seen as more evidence of weakness or unworthiness in the eyes of others.

Conversely, should a healthier man or woman give way and snap at a friend, colleague or loved one, due to workload, stress or other, it will most likely be interpreted as a cry for help and illicit offers of help and empathy simply because they are deemed more worthy or help and tolerance. Healthy people empathize with other healthy people who are busy, frustrated and stressed but rarely with someone who is chronically ill.

At this times we may even have our mental health and stability called into question simply for being forced to deal with things unimaginable to the rest of the world.

As well as the constant battle I face with pain, fear, anxiety and disability I also face a huge battle in effectively masking these things from those around me for fear of being judged.

I work hard so people still see the fun, happy, jolly, caring and intelligent person I am whilst trying to choke down the other part of me that is struggling, sad, betrayed, confused, hurting and suffering. It is why I have had to lock myself away from the outside world for most of my life now.

I don’t even share most of these things with my doctor for fear I will exhaust any compassion, empathy or tolerance she might have for me. It’s incredibly difficult to bear.

Many of the healthier people reading this may interpret this as being untrue, an exaggeration or baseless, however, ask a person who is chronically ill if this is accurate and, chances are, they will start nodding their heads emphatically or may even start crying themselves.

My own marriage faces this strain constantly and I force myself, as best I can, to try and step back and discuss what is happening in a calm and rational way to my husband. Even when I do this there is no guarantee that it will be received or be as helpful as I hope.

The alternative to being open about how you feel and experience this world is being closed, hidden, isolated and alone. This is often the shared feeling of so many fellow Autoimmunes and sufferers. The reality Of feeling alone in our most difficult moments and struggles is breathtakingly hard.

Imagine yourselves being in constant pain and struggle all day and all night and then consider how you might still be able to maintain a pleasing demeanour?

The humble way that many female Autoimmunes describe their partners with such empathic and heartfelt terms is taken for granted by the rest of world. For example, I constantly refer to my husband as “my poor D…, he has to put up …..”, or, instead of using his name I add the prefix ‘poor’ whenever I refer to him. As though it is awful that he has to contend with me or be around me.

I can honestly say that I have rarely encountered such ways of speaking outside the chronically ill community. Each Facebook post that I come across from my chronically ill friends always has such self effacing language and recognizes those in our life as more important, kind, generous and virtuous than ourselves by virtue of the fact that they are around and we owe them a constant debt for doing so.

Is this fair? Is this easy? No! But this is how many of us must live with chronic illness and the price we pay for something that is beyond our control or culpability.

At these times in our individual battles It would mean so much to us to be able to feel and tap into compassion and empathy and would be appreciated far more deeply than any healthier person could ever contemplate.

Gentle hugs,

Trish

Virus Lessons

After watching how the world is coping after a few months of VIRUS restrictions and lock down I felt compelled to make some observations from my own perspective in the hope that it might give pause to those out there who have both intelligence and depth… and here are some of those thoughts.

There has been countless amounts of people who have not handled very well the intrusion on their lives and the limitations that this virus has placed on them. The backlash has been incredibly loud and protestors have gathered all over the globe to voice their displeasure. It seems strange to me that much of the global population can empathize with these people, even if we disagree with their reasoning, however they can not find such compassion for those with chronic illnesses and who have been confined to their homes for as long as decades!

Imagine for a moment what it must be like being confined to your home or bed for most of your remaining life! This current COVID 19 situation is the first time that most people alive can begin to comprehend what these concepts actually mean and how they might affect the hundreds of millions of sufferers out there.

It is truly devastating.

Through no fault of our own, and not by choice, we have been taken out of our lives and interned in our homes. We have become invisible and forgotten. The true victims of lockdown and confinement.

I have watched for weeks now so many vlogs, memes, Facebook interviews, news reports, and large numbers of people who have been angry, fearful, lost, frustrated and sad and each time I think to myself “why can’t people see what the ill feel like all the time?…what must life be like for us?”

After years of living like this we experience anguish, depression, intense sadness, frustration, anxiety and claustrophobia. We feel lost and forgotten by the world. It is ironic that during these times the chronically ill have had little to no difficulty adjusting to these rules and regulations although it is people with chronic illnesses and diseases that are at the highest risks of all by the virus.

As we all witnessed hoarders buying up toilet paper and displaying some strange, selfish, hateful and neurotic behaviors, nobody seems to recall that the chronically ill have never reacted or behaved in this extreme way and yet they constantly called out, picked on, judged, looked down upon and scorned for simply being sick and struggling privately!

Nobody has ever seen a chronically ill person with a billboard screaming because we haven’t had our hair done, despite the fact that we can rarely, if ever, have our hair done without pain or suffering.

The virus has seen a generous response from governments to assist those who have been inconvenienced and have had their livelihoods effected over the past months. A flood of donations, support, funding and public monies have been found to assist people who are suffering at this time and yet many chronically ill and disabled wait for years for assistance. Years!! And even then there is no guarantee that they will get any assistance (even a meager amount) and yet the world looks at them in judgement and condemnation.

As generous payments and company bail outs have been flooding in, disabled and sick people are having their small pittance of support reduced.

It is my sincere hope that as we come out the other side of this virus crisis that the long term effects are not felt on the world economy and fiscal status but more on the worlds hearts and perceptions. I hope we have been educated on what life can be like when crisis and misfortune hits peoples lives and what being vulnerable and inconvenienced is truly like.

May our compassion, understanding and humanity be restored and a reset of our ability to care for and connect with our fellow man be renewed also. I hope that we collectively find a cure for the way we see each other at the end of all this and learn so much more from these lesson we have been given.

Gentle hugs,

Trish

Lockdown

By now the whole world is learning what it is like to be isolated, cut off and housebound through no fault of their own; and they don’t like it.

We are constantly told how people are having their wedding, holidays and parties disrupted or cancelled and everyone seems to be able to empathize with these unfortunate circumstances.

Some people are also losing their jobs and facing an unknown and worrisome future until the covid virus is finally contained and controlled. It’s an anxious and stressful time for those who do not know how they will survive and how they will earn a living.

This is an all too familiar experience for those of us with chronic illness but it has also been something that very people can comprehend and rarely give a second thought to.

As I look across social media I read accounts of people who say how hard it is staying home, how bored they are, are hopeless they feel, how cut off they are from others and how much they yearn for human contact. This is a normal day, however, for those of us with chronic conditions which leave us unable to go out and connect with others.

My husband and I have often remarked that the covid virus lockdown has made very little impact on our day to day lives and it is only now that the rest of the world can start to comprehend what we have been going through for nearly 12 years now. Yes, 12 years.

In that time we have had to cancel so many outings, we have not holidayed in nearly eight years and we haven’t been able to attend weddings, parties and social dates due to flaring symptoms, terrible pain or the inability to move limbs or see. We have had no choice but to somehow accept this and try to come to terms with it all.

Whilst I am the one that has several autoimmune conditions, it is actually my husband that I do genuinely feel for as he has chosen to go into this lockdown with me and nurse me. It places us in very difficult financial circumstances and our security has been dangling precariously for some time. But we had to hold on.

It is ironic that many people could value from the lessons and experiences of those of us who have had to deal with these lockdown situations for decades, but I am certain very few people would ever consider asking.

Craving connection and social interactions are things that chronic sufferers have just had to shutdown and contain inside themselves and I have gone many months without ever leaving my home or seeing anyone other than my husband; but rarely by choice.

During the covid pandemic I am categorised as an “at risk” person and the general public now can try to understand the risks that my health places me in and how vulnerable my body is. Years of immune suppressing drugs renders me at a high risk of contracting this virus and dying. My husband has to be extra careful too. He could accidentally bring this virus to me if he goes outside and the fact is he does have to go outside now because we frequently need groceries and medications.

Every outing is a risk of contracting a virus that currently has no cure or vaccination.

Living without a cure is now a phenomenon that people are having to live through. They are anxious for them to be developed and listen carefully for news that one is close. No one knows what that is like more than those of us with Autoimmune diseases!

We must live in constant hope and need of a cure and a successful treatment for our out of control immune system which is constantly attacking us and spreading inside us. Governments across the world have announced that they are prepared to spend billions of dollars finding a vaccination and assure is that this will happen and is closer at hand. When Autoimmunes see how quickly the world can respond and science be focused we do wonder “what about us?” at times.

Worldwide sufferers have died and continue to die through complications of our diseases but it hasn’t felt the human outcry and empathy that this current virus gets. Whilst I fully comprehend the difference between a pandemic and Autoimmune diseases I also believe that loss of life and death is still the same regardless and human life is still as valuable whether you have died from a virus or another disease. We all have value.

Lockdown is something no one wishes for, wants or chooses and now more than ever we are seeing in real time what many of us have experienced for a very long time. The major difference is that most people staying home are not in pain, disabled or suffering. They are free to move about able to do entertaining activities and catch up on many chores and tasks. This isn’t the case for many of us who must endure their lockdown in pain and struggling.

Unseen inside our homes and behind our computer screens are the lives of people whose pain and struggles have been unknown, hidden and unrecognised for so such a long time… until now. Now, so many things can finally start to be comprehended and I truly hope they will be. I hope we all learn many lessons from the current pandemic so that we will emerge from these time’s with much more wisdom and far more empathic human beings who will take less things and fewer people for granted.

Gentle hugs,

Trish

Trish