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.

Pain and Loss

We have just had our beloved cat go missing so you will have to forgive the tone of this piece, at the very least it may explain some of the thoughts contained… If you decide to read on, that is.

Loss and grief

It constantly strikes me that life seems to be an endless source of loss and pain that we are forced to try and swim against, or we run the risk of drowning in it. As I write this I am also struck by how clear my thoughts are at this time and how calm my words are. Perhaps that is why I have always turned to writing? The chance to express and think out loud.

I am convinced at this stage of my life that we don’t ever really understand the losses and pain that comes from living, which always begs the question do we ever get better at pain and loss?

I always assumed I would. Especially someone approaching her fifties. I always hoped I would. Perhaps I have always been overly naive when it comes to emotional milestones.

I thought that as I grew older I would become much better at handling the pain, confusion and devastation that comes from living. As a younger person I thought that if I studied and educated myself then I would become much more understanding of life and be able to cope much better with the chaos of life. Seems quite a foolish hope to me now. Perhaps it was a sign of my innocence and nativity?

However, loss of time, loved ones, opportunities, health and abilities are a constant theme for people with chronic illness, but do we ever really get accustomed to it? I realize that I certainly haven’t, and yet I dearly hoped I would have. I certainly hoped by now I would have.

The more I have lost my abilities, my mobility and my independence it has felt as though my emotional flesh has been weakened and remains easily bruised. I have been trying so hard for years to make it stronger and tougher but to no avail.

I also thought that living with constant pain would somehow make me impervious to other forms of pain. It hasn’t.

When we lose something precious to us our minds starts throwing up all the many people and things we have lost in our lifetime like hot, razor sharp shards of emotional shrapnel. Bombarding us. Attacking us. Overrunning us. Drowning us… But why?

Do we become emotional cutters when life tests us? Perhaps some of us do. Perhaps I do, anyway.

I think of those dear to me that have died and I tell myself that at least their suffering is over. They no longer have the pain of losing a loved one, no worries or stress to face. They don’t have to fear the next bill, worry about the state of the world or the anguish of losing a loved and having missing pet to carry.

… At least their pain and anguish is gone forever.

As I grow older I realize I don’t fear or dread my own mortality. Perhaps this is the consolation of my age and reality? I see my death in a much more considered way. A much more balanced and accepting way.

Today I began to think to myself if only we could replay the day leading up to a death or a loss. What would we do differently? Would we make better decisions? Could we change the course of our lives? Maybe. But the truth is we can’t have back even a second. Ever.

Our little family is beginning our painful journey with loss and grief again and it somehow joins with all the other losses and pains we have gone through, like an endless stream flowing through our lives.

We must just live with it and accept it somehow.

The irony is that there seems to be very clear hierarchies of loss and pain in society, and acceptable reactions that are judged and must meet with social approval. For example. If we lose a child, parent or partner society will forgive you for grieving and the emotional intensity and fallout that comes from such loss. If we lose a job or our homes there is a human acceptance and empathy for such events. If we lose a pet or a companion animal, we could be forgiven for feeling the terrible loss of their unconditional love, as long as it doesn’t last for too long. But if we become chronically ill and lose our identity, abilities and our former lives then we can face a wall of suspicion and isolation that can be impenetrable. Yet the loss is so deep, endless and personal.

I have never been able to understand why much of the world refuses to acknowledge such a critical, cruel and profound loss. Perhaps I never will.

The irony at this moment in time is that if I had the choice of enduring even more physical pain or having my loved ones back I would choose the physical pain, without hesitation.

My husband and I have already begun the ritual of blaming ourselves, a common stage in the grief process, I also know we will return to this point many times again. But that’s grief isn’t it? The utter torment of grief. The gaping, cruel hell of it all.

But we have each other and the ability to say all the things that need to be said and to bare our hearts to each other. This is the human way. This is the way we cope. Today’s tears my have stopped but tomorrow’s will be ready and waiting again.

The emotional skin of chronic sufferers and their carers may seem like it is a hardened shell and can withstand everything that life dishes out but the truth is it isn’t. We don’t just shake it off. We don’t just snap back. It hurts because it becomes even more hurt in a life of constant and unrelenting hurt. It’s a wound that is never allowed to heal.

That’s why we learn to value love so much. We cling to love. That is why we appreciate understanding and kindness so much and why we will do anything for those we love. That’s why chronic fighters love so much, because sometimes it’s all we have left to give… We become more human than most humans are.

Gentle hugs,

Trish

Community Service

I am sure that this piece will invite some differing opinions and I always encourage honest feedback. I believe it is helpful to see different perspectives on topics. That said what follows is a culmination of my own experiences and observations over the past 10 years, but I never try to speak for others.

I have been a member of several different support groups over the years for the various different health challenges I face, each one is unique of course but there does seem to be a few similarities. Similarities that I wish did not occur as frequently as they did.

I will explain.

Firstly I joined these groups for information about how to best manage and cope with the various illnesses I have. The best source of information seemed to be from fellow sufferers and fighters. Doctors rarely have any practical advice and most often don’t really have a clue to the realities we face. My own specialists tend to discuss these various diseases as though they were no more life changing than a bad flu but it only shows me that they don’t understand anything beyond the diagnosis stage. But that is a topic within itself.. So I joined support groups.

There is any number of groups for the various illnesses, for example MS, RA, IBD, Lupus and so on. Even with subtle variations like women with RA or Mothers with Addison’s or Men with type 1 Diabetes. The list is endless really. However within each group there can be many occasions where members feel discriminated against, bullied and hurt. Regularly someone’s post can become riddled with strange comments and laden with emotion baggage. When I see these situations I can’t help but feel deeply disappointed. I no longer visit these sites that I am members of because I find these incidents quite disappointing. Certainly I don’t go as frequently as I once did. Perhaps others are feeling this way too?

I have often wondered whether such things happen on other sites ie Autism support sites, PreNatal groups, Cancer patient Sites and other medical conditions?

I belong to some other interest groups like Animal lovers groups, Gardening groups etc and I don’t see such arguments and negative comments appearing between the members. It begs the question why? Why is the Autoimmune community so prone to these incidents? What can we do to avoid these situations? Not all groups are like this of course, but it is more common than I think is necessary.

At the basis of this piece is my genuine wish to see the Autoimmune community become a cohesive force for respect, advocacy and understanding. I, personally, work hard to fight the stigma that is connected to people with chronic illnesses. We have been the source of so much discrimination, negativity and derogatory comments that I would dearly love to see this change in my life time. That is my hope anyway. I don’t believe we can achieve this, however, if we can not try and stop the infighting that is happening from fellow sufferers.

This issue is a complex one to unpack because we are all so different with different levels of abilities and different personal circumstances. It is natural that we may not see all things as someone else might if we have different experiences of our diseases. Lack of medical support and social awareness also causes a heavy emotional toll for fellow Autoimmunes who are in the firing line of some of the hardest and some of the most challenging situations possible. But what can be achieved by painful comments and deriding one another?

As a blogger I have put myself (and my story) out there on numerous occasions and always with the honest and sincere attempt to provide information, connection and support for other sufferers but I have also found that some of the worst comments and attacks have not come from the general public but from fellow Autoimmunes! It was heartbreaking and so unnecessary.

Whilst I have the ability to shrug off such people and treat those attacks with the indifference it deserves, I also think about the bigger picture.

I once read the wise words if they don’t know you personally, don’t take things personally... it has become my motto and mantra and that is how I react to people who make comments about me and my illnesses; it’s also good advice for anyone and everyone.

I am convinced that respect has to come from within before we can ask it of others and that is what I would dearly love to see come from the Autoimmune community at large. Put aside our personal differences, our different diet regimes, or our thoughts on each other’s medication choices and become the family that we are meant to be.

We have more things in common as life long chronic illness fighters than we have dividing us.

At the end of the day we all want to find support, to find a place where we can share our experiences, to vent, to ask questions and to give hope to each other and we can do it.

It’s simply a conscious choice on each other’s part.

I want to also mention here that I have had the amazing good fortune to meet some of the most amazing, life changing and wonderful people within these groups. People, who without which, I would not be sitting here writing these pieces. I consider them my family and I am truly honoured to have them in my life.

Chronic illness fighters are some of the bravest and most remarkable people in the world and someday I hope the world will come to know this and appreciate it as much as I do.

Gentle hugs,

Trish