Vanity vs Dignity


With some chronic illnesses there may be several times when you have to tackle some very personal issues and topics. No one teaches you how to do this and so you do it in the best way you can. But we are all different. 

I came from the generation and a family where real ladies don’t fart and you never spoke about private parts to anyone but a middle aged doctor. So you can see that sometimes vanity and dignity have collided. Sometimes in the most humiliating of ways! 

I would be lying if I said that I don’t still cringe at the thought of peeing myself, throwing up on myself, and my tremor acting up in public to the point where I look very perculiar indeed. People won’t make eye contact with you and are very uncomfortable to be in my presence. 

It’s not very easy to reconcile. It still isn’t. 

Growing up at a time where the worst thing a woman could be is overweight. That was the most awful of things to society. Seems ridiculous to me now. 

Even now, people are obsessed with looks and weight; probably even more so. So where do those of us, who have misfunctioning bodies, fit in? 

Weight gain is just a small part of the challenges that we can face! 

Medications designed to assist in the battle with these diseases can leave you with some very difficult side effects. Very. Some cause weight gain. Some cause nausea. Some cause explosive bowel movements. Some cause emotional swings. Some cause even balance issues… the list is endless, and I swallow them down because I want help. I need relief

As my illnesses have progressed I have encountered some situations and issues that I could never have imagined myself having to go through. Ever! Not in my worst dreams did I consider peeing myself, throwing up on myself, shaking in public, falling over in front of people, crying in public and wearing incontinence aids. Not even fellow sufferers find these easy topics to deal with unless they have to! 

I recently discussed the topic of my upcoming urologist visit with a dear friend and fellow sufferer. She has been wonderful and she deals with things with an amazingly stoic attitude. Her medical background means that there is not much she hasn’t seen. I am sure this helps her as she faces her own personal challenges. But I feel like I seem to be still playing catching up, emotionally. And I am slower than I feared. 

I guess I have always thought that I wouldn’t have to deal with some of these things until I was very old and people would see me as a dear old lady and therefore would be kinder in their attitudes. But when you are 30s / 40s people just stare at you when your body doesn’t work properly. Like you are hard to be around. Perhaps even drunk or impaired. 

The idea that I may need catheters, or worse, terrifies me. I will be honest. I feel like I have already been put through too much. A permanent catheter is incomprehensible to me! I am not ready. I feel tearful. My friend empathizes but she also encourages me to toughen up emotionally. 

I guess that is the issue. My sense of dignity and embarrassment is still a strong influencing pull, like gravity, and keeps dragging my spirits down. 

I have always been a girlie girl and have loved dresses, make up, nails, lipstick and trying to look pretty. These feelings take a beating when it comes to the effects of chronic health and Autoimmune diseases. 

Even doctors don’t fully appreciate the effect that it can have on your self esteem. I find this quite devastating. They seem impervious to the idea that I might struggle with embarrassment about some topics. Like the idea of wetting yourself in public isn’t an issue! 

I remember the look on my doctors face when I told him (red faced) about some of the challenges I encountered during sex. It was hard for him to comprehend why it was bothering me. I felt alone, again. 

I have seen a lot of posts and comments from many sufferers who take some embarrassing challenges in their stride and I am in awe. But I can’t and won’t pretend that I don’t feel deeply disappointed and upset at some things. 

My husband had been amazing. I appreciate him showering me, toileting me, brushing my hair, doing my make up and general personal grooming that I would do myself. I appreciate it but I hate it. There is a huge difference. 

I think people would be surprised by just how hard many sufferers must try in order to look comfortable, neatly dressed, tidy and at ease, despite having so many issues happening at the same time going on below the surface. It would be nice if people could be understanding when it came to these topics and even reassuring. 

I have needed a lot more compliments and assurances from my husband now than I ever needed as a healthy woman. I wish that I was more comfortable with how my body behaves but I am not. 

And sometimes I have questioned whether I ever will… 

gentle hugs, 

Trish. 

If 


If I could give you a flower, I would give you them all. 

If I could spend a moment with you, I would want to spend more. 
💋
(Original writing) 

Invisible 


As I sat aching and numb with my tears 

My eyes showing pain 
after all of these years 

What will happen? What lies ahead?

My heart beating loudly with the fears in my head 

Will I recover? Is my life at an end? 

She touched my hand gently 

and then softly she said

What lies ahead we can’t know for sure 

We don’t have answers 

and we don’t have cures. 

The pain can be endless, 

so much will be changed. 

But as you can see 

there are worse things than pain.  

some diseases are accepted

But with some it’s quite clear 

With ‘these’ awful diseases 

you will slowly disappear

In time you are forgotten 

and in time you will see 

That all you have worked for

or may have wanted to be 

May be taken from you, 

although know one may know 

How painful it is

Because you can’t let it show 

To talk about invisible diseases today 

Is seen as lying and failure, 

So you may be forced to go away 

there is no medicine to help ‘others’ 

be kinder or try

To accept that there are things 

that can’t be seen with the eye

And while there are many questions 

one thing remains true 

It’s not the disease that is invisible 

Its your suffering. 

It’s you. 

With Love 🇬🇧

I, like many people around the world, have been so terribly shocked and saddened by the pain and suffering in the U.K. This year. 

At this time of my health I have not been able to watch or hear the news as it has unfolded, but as I become aware of the many horrendous events taking place there my heart just breaks. 

Trying to take in all the pain and feelings running through the country at this time is almost impossible. 

And then it occurred to me that regardless of what event takes place in the world, or where, the feelings I feel above all others is that of love. 

I love my friends and family in the U.K. At times like this I think of them even more. They become more precious. Perhaps whenever any tragedy takes place the things we think of the most are the things we love and not the things we hate or fear? 

The truth is that tragedies will always take place at any time and anywhere around the world. They are unpredictable and shocking. We will never be able to avoid them and although we do our best to protect ourselves nothing is guaranteed. Ever. 

Whenever some event takes place on a national scale my thoughts always go to those I love, and that includes the many nameless people who are my fellow countrymen. 

We love our loved ones more and we love our countrymen more whenever adversity or tragedy comes our way. 

I can’t really explain the deep affection and respect that I felt for the U.K. from the moment I visited its beautiful shores. I was forever in awe of its stoic beauty and its people. Like a childhood friend that grows ever more treasured. 

As you go through this tragic time I hope that you know the rest of the world really does care. The rest of the world really does mourn. The rest of the world is shocked and saddened too. 

Through the centuries the U.K. has withstood many challenges and heartbreak and I hope after this awful year that you will all rise again with renewed love for each other and renewed love for your country. 

In the meantime we send you our love and sincere respect. 

Gentle hugs, 

Trish 

Unpredictable 


Unpredictable. 

What a word! 

Years ago I used to like that word. I used to like a changing environment or a job which was always different. It was interesting. That has changed forever now. 

As I lay in bed and watched my husband read, it occurred to me what unpredictable now means. 

This is how I explained it to him … 

Imagine if you had to live your life, everyday, never knowing when an attacker will come, from nowhere, and beat you mercilessly. Leaving you to carry the pain for an unknowable amount of time. Recovering slowly. Feeling a tremendous sense of injustice and anger. Frustration. 

Until the next time. Always a next time. 

That’s what it is like to me. That’s what it feels like to me. 

Sometimes it may happen weekly. Sometimes I may have a short reprieve. I am not in control and I can’t protect myself. Only endure it. 

There is no justice in it. There is no way to make it stop. And there is no way of knowing when it will happen again. 

I must somehow learn to accept the fact that my attacker will always be there, and is merciless. 

It doesn’t care what I want to do or when. 

That is what unpredictable means to me now, and will mean this forever. 

Gentle hugs, 

Trish 

Question Time 


I dared to ask myself, and my husband, a question that has long bothered me and certainly taken a lot of my time, life and efforts. Probably too much. It’s ironic really, but I asked myself the question ‘do we ask too many questions?’

Before you read this and laugh allow me to Elucidate.  I am sure that some people ask many more questions than others, and some people, like myself, ask many more  questions about a range of topics that have eluded even greater minds than mine. But to what benefit? 

So what is the point of all this thinking and questioning? Can we be too esoteric? 

At its most positive, it has helped me navigate some difficult waters and has helped me with some important emotional development. At its worst it has caused me a lot of pain and confusion. Even causing frustration and depression sometimes. I have never suggested that Autoimmunitygirl is an expert or a font of knowledge about all things. I am learning about living with illnesses as I go, just like anyone else would have to. But…

Are there questions that should not be asked? 

For example. Humankind has long asked the question why are we here? … And they still ask. 

Today I thought about some of the times in my life when things had become very confusing and difficult, and during these crisis talks many around me where scratching their heads and asking how did we get here? It occurred to me that at some point it no longer mattered how or why and that it became more a question of what are we going to do now? 

The eternal question of why are we here has revealed thousands of ideas and possibilities that range from an act of God to the possibility that we are the result of biological accident; Perhaps caused by a mixture catastrophic events and incalculable probabilities. Whatever version you may favour, or whatever ideas may be waiting, the question still remains what do we do now? 

I find this to be far more significant and rewarding. 

For whatever reason we are here, it is likely that the most important role we could undertake while we are here is that of caretaker for the planet and each other. Especially if we are going to be here for much longer. If this thought process sounds reasonable than the next reasonable question is are we doing our best while we are here?

As a species, and despite of our different backgrounds and circumstances, do we all take the role of caretaker for the planet and each other seriously and make it our prime mission on life? 

These questions seem to have the most significance to me now and carries far more potential on what will ultimately happen.  

I believe people can spend decades asking questions and searching for answers and meaning, but it is becoming more important to me that I learn not to ask too many questions, or try and ask only the questions that will make the most difference and meaning. 

Afterall is said and done, I always believed that the most important and revealing thing about a person is not what they have done in the past, but what they do next… and I still believe this. 

I am glad to have one or two answers after all these years of questioning. 

Gentle hugs,

Trish. 

The Buidling


My friends have been asking about me lately and I wish I knew a better way to thank them for their love and support, but because the battle is so hard right now it is difficult to know what to say… 

I wonder if other chronic fighters feel the same? 

I want to say that I am ok, truly I do! … but do I owe them a lie or the truth? Is it kinder to say “… I am ok, thank you…” or “it hurts so much I am barely hanging on?” 

What do you tell the people you love? It’s like a double edged sword. Both sides painful and neither are easy. 

I am mostly saddened that after all these long years that I had hoped that I would be stronger at coping through such desperately difficult times. Such painful times. Such debilitating times; but I am not. 

I saw a picture of an old building which was slowly giving way to the forces of nature and time. No matter how strong or beautiful the building was or had been, time and forces have had its way… and always will. 

Am I strong? Have I been strong enough? Or have the forces of time, pain, disease and many other factors been slowly eroding away the person that I was and the person I wanted to be? 

Yes. It has. 

Yes it has. 

How do I explain that to others who may react unpredictably to this and not know how to interpret this information? I don’t want to worry them. I don’t want to hurt them. I don’t want to intrude on them. 

Today I was barely able to be awake for longer than a few hours before pain and weakness forced me back to try and rest. Exhausted. 

Sleep has been fitful but it has also been a refuge from the pain of being awake. I treasure whatever sleep I can get these days.  

I am taking more pain meds than I ever have. I have had to increase my prednisone (steroid loading) because of the pain on my joints and stomach/ bowel. I am too weak to walk without Derek or my chair, in fact it’s hard to move my limbs at all. I can’t eat without horrific pains and throwing up on myself; so I don’t eat. 

However, I worry more for my husband and my darling furries. I worry about how they are and I feel bad that I can’t give them more than a soft kiss and a teary thank you. 

Guilt and pain are a toxic combination. More poisonous than arsenic. 

I am laying here with heat packs, an electrolyte drink in a child’s sippy cup, a sleeping puppy, a vomit bag, a book which my husband has been slowly reading to me, pain killers and my blog. 

I keep asking myself ‘ … are other chronic fighters doing the same?…’ is this something we all share and experience? Is this what connects us all? 

And this is why I write what I write. To reach out. To share the things I ask myself all the time. In the hope that others may understand. In the hope that it makes a difference. Somehow. 

Like an old building that may be eroding and embattled, there are stories and memories everywhere. Even things to share and learn. 

And now I must rest again… 

gentle hugs, 

Trish