Building A Filter

Just as important as building a future for ourselves is building a good filter for ourselves. A filter that strengthens our ability to cope and survive in this world with illnesses and challenge. A filter that protects us from hurting even more from all the different forces in our lives.

If I had one tip to give a fellow fighter, or even a fellow human being, it would be to build a good filter for living.

During my lifetime I have encountered many different situations and many different people where I felt I listened to, and took onboard, the wrong information and messages. I was too willing to judge myself and my value based purely by their beliefs. I overlooked a lot of useful information and experiences simply by having an underdeveloped (or non existent) filter of my own. It has taken years to understand some of the damage caused by this and may take even longer to try and repair.

We come into this world with no filter and from each exchange, each experience, each lesson and each emotion we build ourselves a filter to move through our lives. We rely on people to show us how to do this and when we are young we are very vulnerable to their influence and instructions.

In my own case, the filter I had grown up with was not a healthy one and therefore a lot of painful and unhealthy events could simply pass through and damage the person growing inside. Back then I didn’t know any better. However we can’t live our lives blaming those forces we encountered when we are young, we have to take charge of building ourselves and repairing ourselves.

Oddly enough, when my illnesses started taking away a lot of my abilities and former life, my filter started growing exponentially!

I compare the filter concept to a broken leg that needs plaster, we have to take care of our broken bones and injuries to give them the best chance of healing and therefore carrying us through the rest of our lives. The plaster is a protection for our broken and mending bones. The filter we have for what we take in from the outside world, the messages we receive, the criticism we hear, the treatment we accept from others becomes so important when we already have so many difficult challenges and struggles in our health.

It seems when you become ill or incapacitated everyone will have advice, opinions, judgements, suggestions, comments and appraisals which they will tend to dispense, regardless of how much they understand our situation. I have often wondered why society seems to be comfortable with doing this but perhaps that is another topic in itself. It is vital that the filter we use is strong enough to protect us from unhealthy and damaging information.

It seems a lot to ask of someone who is already challenged and struggling at times, but that is the road we are given and that is the road we have to walk.

In the beginning I listened to far too many unfair, uninformed, biased, incorrect and misinformed information and opinions, but now it has been much improved. Although this has also meant that I have had to switch off a lot of sources of this type of information, it has meant a much better quality of life in the end.

It is not easy to switch off these sources and can mean letting go of people, habits and influences that have been in our lives for a long time but it can also mean allowing ourselves the chance to have a much better quality of life.

Gentle hugs,

Trish

The facts

And yet so many suffers still go through the pain of ‘…it’s all in your head?’ Or ‘…you must be faking’ by people they trust and rely on.

Together we can stay strong until better care and treatments are available.

❤️❤️

A Passing

Today I learned the shocking news that another Autoimmune fighter had passed away. It’s hard to know what to say when something like this happens and words just don’t seem enough.

She was a unique lady and she did everything with spirit and emotion. She even gave of her precious time and abilities to raise funds for MS research. She was a very giving lady.

I won’t pretend to have known her on a deeper level because that is the privilege that only a few get to claim, but I can say that the person I came to know was a fighter and a very genuine soul.

After the initial shock of such a terrible loss it seems inevitable that we find ourselves descending into the if only. A place where we can punish ourselves continuously with thoughts of ‘if only I had done …’ or ‘ ‘I wish I had said ….’. Years can go by in this place and I feel like this is an unavoidable state for many of us. I have spent many years there and I am sure I will do so with each and every new painful loss; even though I know in my heart that no good come of it and it changes nothing in the grand scheme of things.

Perhaps it’s simply the pain burning on in the undying embers of our memories like a smoldering fire, always ready to reignite when we fan the flames?

One of the things that connected me to this lady was how she too was in a wheelchair and we discussed some of the challenges that this presented us when trying to make a new life with our Autoimmune illnesses and disabilities. She shared a lot of her thoughts and suggestions and I appreciated them. Probably more than she ever knew… I should have told her that more.

We were both childless and without family support. These were very defining events for both of us and had very deep effects on both our lives. It was interesting to discuss these topics with her, even if we did so only briefly.

Typical of sufferers in our circumstances, we doted on our pets and our partners. Our hobbies and our passions were our ways of staying connected with the world. I wager that you will rarely see a picture of a chronically ill person without a companion animal close by. They become the bearers of the unconditional love that we crave during these life changing times; I can’t conceive of what my life would be without them!

later, as I looked upon her Facebook pictures, I realized that I will never know, and never knew, the real depth of the person and all that she had faced. Social media will never be able to show anyone the real story.

A smiling picture of a chronic sufferer at the beach (or anywhere) shows nothing of the pain it took to get there, or the years of suffering and the sacrifices made just to have 5 minutes on a beach and in the sun. It’s merely an image but it is not the real picture… pictures become merely echoes of a life, but are not the real voice.

As I looked at her pictures I began to think if only I had taken a little time to say hello this past year… I realize it wouldn’t have stopped what was going to happen but it might have let her know she wasn’t forgotten. After all, isn’t that what we want from our time spent on this earth? Isn’t that what makes our struggles and battles have meaning?

She was far too young when she passed away. It doesn’t seem right. But how many times have we had to say that about someone though? I believe I have said it too many times in my lifetime. It doesn’t get easier. Dying early is tragic. Losing your life at a young age to illness and disease is also devastating, and the grief never really ends. … my friend had endured both.

Very few people will ever comprehend all this unless it has happened to them.

People seem to think that the life of a chronically ill person is not a real loss. For example, someone may see a person who is now in a wheelchair due to illness and they seem to think that it is merely the same old life with the addition a chair… It isn’t!

It’s not just simply laying in bed, not having a career, taking a few tablets and maybe going out occasionally. It’s not like changing jobs or relocating abroad. It so much deeper, painful and profound… It’s more like dying, moving abroad and being inprisoned all at the same time.

It’s not just the same old life with a few simple addition like a chair and some medications. You don’t just go about your old life and resume where you left off.

…I truly wish it were though!

In truth it is the end of the old life. The loss of the old life. A completely changed life which now requires a wheelchair, medication, reinvention and acceptance are some of the requirements needed in order to be able to bring some life back and some meaning back.

Losing a fellow fighter is especially hard because those of us who fight illness and diseases have some idea of the battle and the strong forces that the person has had to face. Like losing a veteran who has battled many wars for many years. A fallen comrade.

But there is no memorial, no remembrance day, no last post or no tributes for those fellow fighters we lose along the way. There is, however, the enduring knowledge that for millions around the world the battle still goes on.

With deepest condolences,

Trish

Who Cares?

A darling friend posted the attached picture on her Facebook wall and as I looked at it I felt it pretty much sums up life these days, especially the life of someone with a chronic illness.

It seems as though it is common amongst Autoimmunes that everyone you know will get tired of the struggles that come with chronic illness, but no one more than the person going through them!

After nearly a decade of being at home due to illnesses I am truly and utterly over it.

The question for me now is how do we advocate for ourselves and make people aware of our changed circumstances without sounding like a broken record? Without replaying the same messages and struggles? I honestly don’t think there is an easy answer.

It is usually only other sufferers that have empathy for how hard we are fighting as they are fighting just as hard too!

These days I don’t discuss my health in conversation to anyone other than my doctors. No one knows (apart from you dear readers) what is happening to me at any given time. The reason for this is that it is tiring explaining all that is going on and since nobody asks I don’t really want to waste time explaining to someone who really isn’t interested. No one wants to repeat the difficult parts of their day to day lives to someone, this personal information isn’t general conversation and should really be reserved for those who genuinely care for your well being and are invested in you as a friend or loved one.

Friends and family will often tell me how busy, sick or hectic they are and I will simply smile and nod in reply. It seems to be the most socially acceptable way to behave now. Autoimmunes become the silent listeners. The shoulders to lean on. The invisible friends at the end of the phone.

I have often wondered if other sufferers feel the same? Is this the norm amongst all chronically ill fighters? If so, how do we make positive changes and redress this balance? I really don’t know.

Over the years I have been grateful for the constant love and support of my husband. However I have no doubt he is as tired and over it all as much as I am! He has been down in the trenches with me all these years, nowadays when he asks how I feel I even find myself smiling and saying ok to him too, regardless of what pain I am in.

Is that where we have to be now? In the land of ‘ok, thanks..’ ?

I even smile and say I’m ok to my doctors now! Even though I should be able to tell them everything. Perhaps it’s just me but I feel that once you have been sick for a long time, and have more than one health issue, you become a complex and bemusing situation for them. There is an uneasy dialogue that happens now which changes more and more as the years go by. I now find myself not wanting to bother them further so I keep a lot of what is going on with me, and anything that may have worsened, to myself… I know this is wrong medically but socially it becomes the acceptable behavior.

This meme prompted me to have many different thoughts and questions about how difficult it is to communicate now. The distance between people seems to be growing, despite the technology we are surrounded with, it feels as though the world struggles to show any empathy and care, and especially to certain groups of people.

My Social media pages are filled with videos of acts of kindness from unknown strangers from around the world, but why are they isolated incidences and why is it always somewhere far away? Why is it a always strangers doing such acts?

As much as we want a human connection and are touched by acts of kindness we struggle to find evidence of it in our daily interactions, which can leave us asking ‘does anyone really give a shit?’

When I think about all the things I care about, from people I love to issues like climate control, there are many things I give a shit about…perhaps too many! Over the years I have labored to do whatever I can do and I put my time and efforts (and Money) towards the people and things I really care about but I have wondered, many times, what difference does it really make?

Today as I write this I find I must recommit myself, daily, to showing my care and passion for those that I love and care about and remain grateful for those that care about me in return. This is a daily mantra now and it helps direct my thoughts and heart to places which I have felt the greatest peace and connection, like enjoying a cool breeze on a hot day.

Despite everything, I realize when I ask the question ‘Does anyone give a shit?’ my answer has always been … ‘I do!’

Gentle hugs,

Trish

Projecting …

It’s been strange and very eventful here for nearly two years now. Many changes have been taking place and so many ups and downs. A typical life with chronic illness? I guess so.

In an attempt to put my mind and time to good use while I am bed bound and in pain I have started several projects and they have become a real mixed blessing.

During some of the worst pain and emotionally challenging times to date I have felt my hopes and will to go beginning to failing. I had no idea what to do to get me through. I tried all the things that have helped in the past but they no longer work anymore.

My darling husband has been pushed beyond anything I could imagine and now his health has started to suffer too.

Having very little sleep we survive by napping if and when we can. It is not unusual for us to be finally getting off to sleep at 6am and then rising at midday. We sleep when my body allows us to and I hate that it impacts on my husband. I have told him many times to sleep in another room but he refuses, he is a generous and caring man.

This has all been mentally exhausting on both of us. Our minds are like over wound clocks and fatigue is a constant companion as the weeks have turned to months and years. Yet we have pressed on as best we can. We both look back on our busy working lives and I think how much easier they seem than now! I quietly laugh as I reflect on how we managed it all.

I dearly wanted to let my husband rest so I started to think of things to do to keep my mind off the pain and other symptoms while he could catch up on much needed sleep from time to time, for that I needed something to occupy me and that didn’t disturb him. I needed projects!

I decided to use my project management skills from my previous life and career and renovate the house to become more accessible and make some comfortable changes so that we could have a change from the way we have been living everyday, for over a decade. I needed something to change as we no longer can go on holidays.

So I have thrown myself into renovating mode and started this project, with the help of my husband, and it has taken every bit of will and effort to make things happen. I had no idea how hard it was going to be to work with tradesmen and contractors at this time, things have definitely changed since I was project managing! These days it is chaos management in the extreme! We have made baby steps though and it has started to feel rewarding, at last.

Not satisfied with this I decided to double down and take on another fur child into our lives. Yes, another one! It’s been exhausting, agonizing and delightful all at once. She is our furry little trouble maker and her rambunctious ways have both entertained us and physically destroyed us; even more than we already are.

On any given day we will be up almost all night applying heat packs and meds. Rising to take care of a large family of dogs and cats, and then having a constant stream of human traffic through the house, building, hammering, drilling and nailing. It’s a chaotic circus to say the least.

Each night we can barley speak from exhaustion and I have had to defer several scans due to a) puppy antics b) tradesman issues and c) debilitating pain.

Has it been worth it? Yes. It certainly think it has.

I never predicted how much it could make me look forward to the coming days, even if only to organize people, draw plans, call suppliers and be a Fur mother, even if it has all got to be done from my bed. I can’t afford to stop or look back at this time. Tomorrow’s demands mean I can’t think about what will happen to my health and challenges… I am just holding on and doing my best.

Tonight I have had the idea of an art project to help raise awareness of invisible illnesses and autoimmune diseases and have started putting together planning and submissions for how to tackle it all (even though I can’t raise my legs and I need help to shower and move).

Perhaps I am my own worst enemy. Perhaps I am irretrievably naive and even possibly insane. Whatever it is it has helped me look at tomorrow with new feelings other than worry and dread.

I am currently in a bad flare and it’s all I can do to write this piece, but the joy I get from connecting with you wonderful people and knowing you are all trying to make your lives as best you can encourages me to share these little revelations. Sometimes having a project helps focus and nourish the mind even when our bodies are fighting the hardest battles of all.

As autoimmune sufferers we can become split into two people, one with physical pain and health challenges and the other who lives inside our hearts, spirits and minds. A physical presence and an inner one. When the body shuts down we may have to make the most of our inner world and life.

… and now I shall try to rest as morning approaches once again.

Gentle hugs,

Trish

The Morning After

Years ago the term the morning after had very different meanings and connotations to what it has for me now. Most people can identify with the term when in connection to a night spent drinking (and other things) but very few people will understand the after effects felt by those with Autoimmune illnesses after doing, well, basically anything.

And I mean anything.

The more stressful or physical an event can be the more our bodies can pay a tremendous price. Like anyone else out there we want to do pleasurable things like visiting, going for dinner, watching a movie or sitting by the beach but even those things can cause a backlash of pain and symptoms that are unpredictable and unavoidable.

Unlike my former life where I often experienced hangovers and repercussions for things I did in the pursuit of my personal pleasure, the after affects (often called flares) I experience today are usually the result of when I try to do things for others or to help others, when I try to feel useful and valuable. Even trips to specialists, waiting in their office and the return trip home can be so tiring and painful.

I hate it.

Sometimes life throws us a difficult time and a very stressful situation which we really can’t avoid and then an hour or day later I start experiencing an exacerbation of the pain or some new symptoms I don’t normally have to contend with. Flares can last from days to months and are an emotional and physical hell.

I am currently experiencing one as a result of a difficult period and stressful events (physically and mentally). Like all my joints where lit on fire and a truck started driving over them. My vision has suffered. My tremors and vertigo have worsened and my colitis (IBD) has activated and reduced me to a liquid diet and living in the bathroom. All I can do is hope that it will pass soon… But I don’t when it will pass. I never get to know.

Imagine your worst hangover, your worst flu, your worst gastro and your worst fatigue ever and then throw them all together at once. And then throw in a broken bone for good measure!

This is not the same for every Autoimmune sufferer, we all have varying flare symptoms and for varying lengths of time, but we all hate it and wish we didn’t have to go through it.

Sometimes, if the flare is particularly cruel, it might mean a trip to A&E for an IV of methyl prednisone or antibiotics; or both.

The morning after can actually mean many mornings, and for relatively minor offenses compared to some of the activities I used to be able to do, but those are the terms and these are the conditions now.

Can someone who doesn’t have these illnesses understand what some of us contend with? Maybe not. But as long as we keep trying to explain, hold our heads up and making the information available, then maybe, just maybe…

gentle hugs,

Trish

Some Of The Good Stuff

It may surprise many people, and it certainly surprised me, but there are a few deeply positive things that can come from being chronically ill!

Before you go running off looking up words like hypochondriac and the like please allow me to explain…

I checked my email this morning and as the usual junk emails dropped in I started deleting the nuisance ones and sending them to internet hell, I began to realize something quite profound and it goes like this… Amongst my daily emails and spam I could see their subject lines all leaping out at me. Thing like BE A SUCCESSFUL POWER WOMAN, TODAY! And ARE YOU AT YOUR BEST YET? … And my old favorite HOW TO STAY THIN OVER 30… followed closely by … HAVE YOU GOT IT ALL YET? [WE] CAN SHOW YOU HOW… and then, finally, HAVE THE BEST SEX AND FEEL YOUR MOST SEXUAL!

all these emails represented the very forces that used to drive most of my life before I got this ill. I realized that as I now go about my day to day fight none of these things have the slightest bit of significance to me anymore!

I have learned something a little deeper about each of these topics. Things like…

The Power Woman: I don’t see the power woman as being this larger than life, successful business woman/persona with a huge bank account, gorgeous children, godlike partner, a Ferrari and a tight body. Nope. I see the power in every woman now. Every woman that keeps fighting on to live life and be loved for who she is.

Being The Best: the best person I can be now is someone who I like, not one that everyone else my like or want to be. I am looking for and finding her much more easily now than I did before I was this sick.

Having It All: Having it all doesn’t make us better or happier, nor do I think it is even possible or necessary. I don’t wake up looking for things to have but looking for hope and believing that finding love and peace Is having it all. I am getting closer, slowly.

People often confuse success with excess. I know I did, and still do sometimes. But it’s like a picture that is becoming clearer to me, thanks to being ill.

The Skinny Girl Diet: I often marvel at some of the sh*t I am sent to body shame me into buying something, or making someone else rich off of my lack of self esteem or low body image. It’s never ending! Since I am often too ill to read or watch some of the propaganda that comes pouring in through the internet (and many other sources) I find I don’t spend as much time self loathing and looking for cellulite and wrinkles. Sure I know they are there, but is it worth obsessing about?

Simply put, when I am crying with pain and straining in agony I don’t look down and see if my thighs are the right size.

The Best Sex: I always start by saying that I can’t speak for others, so of course what I am going to write here is solely about my experiences, so here goes…

I have had my share of sex and had varying degrees of sexual satisfaction in my lifetime. I don’t consider myself an authority, but I believe I now know what sex means to me. Years ago sex was a way of discovering who I was and gauging how desirable I might be. Today is very different. Like night and day. Today I value intimacy above all other things. I look for a deeper respect, emotional and intellectual understanding behind the act and I have come to see it as an expression of how much someone is committed to me and my life. No matter how difficult it can be at times.

Especially since at this point in my life sexual contact means varying degrees of pain for me, I invest a lot of love and giving into each intimate moment. The pain reminds me of what it is I am prepared to go through for love. And isn’t that a big part of love? Doesn’t it take us to places we would never know and through pains we could never understand unless we surrender ourselves to it? Sure there are things we can do to try and minimize our pain and risk in life, but the person who truly loves us will also appreciate us and respect us for our pain and sacrifices.

Since being sick sex is no longer gauged my sea life by how often it have sex or by how colorful my sex life can be, it has far more meaning and significance now. The BEST sex I can hope to have now is where I feel connected, valued, important and understood. I yearn for experiences where with someone who truly knows me in every possible sense (mind and body) and wants to stay in touch with that.

I will also admit that when my health started to decline I did worry that my partner would also lose sexual interest and therefore love for me, like so many of the relationships of my past, but I forced myself to confront these fears and to speak openly about these things. I admitted that I feared that I wouldn’t be able to satisfy someone sexually anymore and this is a courageous act that I wouldn’t have done before I got sick. I would have just let myself slip into nothing and never given myself a chance to see sex in completely different ways. Ways in which no email or lingerie catalog will ever understand or sell you.

So as I deleted 99.9% of my daily email I realized that from all the junk and rubbish I may have encountered through life with illness and my life with this email account, that there is still some good stuff to be found.

Gentle hugs,

Trish.