Feelings 


Today I was remembering my life before. Before this. I seem to remember a very busy life of rushing from meeting to meeting, office to office, project to project. Days passing by in a blur. Always waiting for a break and some down time. Always busy.. but there seemed very little time for  feeling. Feelings were always suppressed and inconvenient when there was so much to be done. 

I guess there were emotions like frustration, stress, curiousity and determination, but as I sift through those times I don’t get a sense of depth of feeling. It seems curious to me now because now it is so very different. 

Now I feel so many things all the time. In fact it is my daily struggle to ensure that some feelings are kept in check or they can become too much to manage on top of everything else. 

For example, if I allow myself to feel all the pain, and dwell on it for too long I can quickly feel defeated. 

So I have learned to try and switch some of it off. I think that is sometimes why people underestimate the pain and suffering that many of us go through because we have spent so long teaching ourselves to internalize and disconnect from what is actually happening inside us. There is a strong message that people don’t want to know, so we try to never show it. 

Doctors appointments can become strangely sterile as we try and explain the pain and suffering that may take place each day. There is aways the real risk that many doctors and specialists underestimate us or dismiss us because of how we try and control our emotions when we are out in the world. If we told the truth or showed emotions we would be labeled as unstable and simply depressed. 

Out in the world I feel like an open wound where I am exposed to the elements and the people around me. This is not the case when I am in the privacy of my home. I am free here. I am safe here. That’s why I try to stay in this safe place as much as possible, where I can battle on and manage with the aid of my protective home around me. Out there is where all the judgements and discrimination lie. 

In the sanctity of my home I have been working at developing a much more genuine relationship with my feelings, as I have gotten older and my circumstances have changed this is becoming much easier and more rewarding. I have questioned why I have felt the need to mask or hide my feelings for so long when they are such a part of who I am and my life. 

Is it for sake of others that I have done this? Of course it has been! But what has it really gained or benefited me? Not very much at all. It has simply made me complaisant in my own suffering.  

Our feelings tap deep into us and how we see and experience the world. Our feelings put our personal stamp on the things we do and the things that happen to us and it is only by expressing them that I can see them develop and change over time. 

It is now my intension to live a far more honestly feeling life and be at peace with it. Seeing my feelings as a sign of my personal honesty and not a sign of my weakness. 

Perhaps I shall see this as a small step in taking back my humanity and accept who I truly am. For so long denying how I felt was sending a message that it is not ok to feel and I am not good enough when I feel things. 

Only time will tell if it will add new dimensions to my life and coping and I feel I owe it to myself to try. 

Gentle hugs, 

Trish. 

A Harder Road

To date this is the worst flare / relapse I have ever had. It has been sad and also frightening. 
Sad because nothing I do seems to make any real improvement or relief. I have tried steroid loading, extra B12 injections, stretching, massage, gentle physio, increased magnesium, stronger pain meds, compression wear, meal replacements, mindfulness, positive readings, distractions … and still no improvements. 
Frightening because I have no idea if / when it is going to improve, and it’s been 4 months and counting…
This particular flare has tested me harder than ever before and I know the cracks are showing. I feel for my husband too, as he has been working around the clock to try and help me cope. He is close to exhaustion too. Where would I be without his kindness and spirit? I really don’t know…
The fatigue is unbearably crushing and it is even hard to breath. Sleep is sporadic and painful. My joints and muscles are painful, stiff and weak. Migraines, balance issues, terrible stomach / bowel pain, face rash, vision problems, absence seizures, tremors, spasticity, nausea and fevers are part of my daily routine. I even had a 6 week bought of trigeminal Neuralgia thrown in for completeness sake! 

It is hard to find the words and energy to describe how we are coping and what we are going through; we just keep on doing our best. It has felt like I am a prisoner to these four walls and bedroom. But I can’t afford to think beyond today or even this moment. It can quickly become overwhelming. 

Not many people are aware of what can go on behind closed doors when flares or relapses happen. It is usually different for everyone and there doesn’t seem to be any logic or pattern to what will happen and when. 

Some choose to go to hospital for assistance and that is often a wise choice, but I have always preferred to try and be at home with my furries and where I can have access to the things I know. It is an individual choice and I feel like it is some of the only choices I am still able to make at this time of my life so I cling to it desperately. 

So why write all this? 

It has always been my hope that if someone is prepared to share their experiences and try to increase awareness, it will ultimately help everyone out there. Sick and healthy alike. 

Is this incredibly naive? Possibly. 

If we try to tell our truth and our experiences and people still don’t want to listen then it is a conscious choice on their behalf, and not because of our lack of trying. 

I won’t pretend to think I am changing the world, but perhaps I am changing some small thing for the better?

That has always been my ultimate hope after all. 

What will tomorrow hold for me? I don’t know, but I have existed this long on hope and it is now how I try and face each and every day. I truly hope tomorrow will be a little kinder. 

Gentle hugs, 

Trish. 

True Confession. 

It is quite possible that I am in the minority of chronic sufferers on this topic, but I have never minded being different or original and I believe that everyone has their own views and truth. This is mine. 

A pet peeve of mine is when healthier people tell chronically ill people, who are in pain and suffering, “… be grateful you’re still alive…” 

To me it is the ultimate dismissive gesture intended to silence you and make you feel guilty about sharing your challenges or experiences. But it doesn’t work on me; not anymore. 

You see. I am not grateful for being alive and in pain. Why should I be? It is truly something that only someone who is not in constant and agonizing pain would say. 

I remember when my mother died after a short but painful battle with cancer and we took comfort in the fact that she was no longer suffering. We didn’t want her to suffer anymore. Death was her release. 

However for those of us who are in constant daily pain, there is no release and we have to somehow be able to physically and emotionally keep battling everyday. Yes. Everyday. 

Many of us have wished we could have release, and I have even wished for release in the form of death. I am not ashamed to admit this.  Especially when there are no cures for my current illnesses. 

Suffering is a most personal and intimate experience and I do not think it is something that someone else has the right to judge or dismiss. 

I will not try and speak for others and the rest of the chronic community. These are my thoughts and feelings on the topic. 

I know that there are some out there that will no doubt think I am not being very inspirational, grateful or positive. I don’t really care about their opinions now after many years and challenges. 

am grateful for many things, but I am not grateful for being alive and suffering everyday. 

I usually try and occupy my mind with thoughts about other topics to try and distract myself from questioning why each day is filled with pain, disability, challenge and lack of physical abilities. 

I have become very good at this and I assume many others are too. That is usually how chronic fighters keep going. But I personally reject the idea that we are not allowed to question or be ungrateful for the hand we are dealt. 

There are many times when I would welcome death as an end to my pain and progressive illnesses. That doesn’t mean I am suicidal or lack character. I think it is more an indication that I am a realist and pragmatic. 

Let us consider for a moment that a healthier person on the street is given the choice between a lifetime of pain, disability, lack of physical function, lack of independence, frustration, disappointment, loneliness, isolation, unemployment, rejection and abandonment … OR… slipping peacefully into oblivion. Which do you think they would choose? 

As I said earlier. I am grateful for many things like my husbands character, my character, my furry companions, my past experiences, some people I have met, the things I try to do and the things I have already done… but am I grateful for being alive and fighting the hardest battles of my life? No. I am not. 

Gentle hugs, 

Trish 

What’s On The Menu? 


You will notice that Autoimmunitygirl has added a new button in the main Menu and information tabs! 

Yes! It is the link to the charity and merchandise button! 

All profits made from sales will be given to research and support of all those wonderful Autoimmune and Chronic fighters out there. 

We will also add the Autoimmunitygirl logo in coming days in case you would like to be an Autoimmunitygirl yourself!  (sorry guys)

We are so pleased to reach this point in the journey and if there is anything you want to see on a shirt please leave your suggestion in comments. 

Also … 

We intend to extend our product range very soon. 

So happy! 

Gentle hugs, 

Trish 

💋

The Silent Rebel



Setting healthy boundaries with the outside world.
One of the most difficult things I had to learn (and am still learning) when I became this ill was how to say no to things I knew I was unable to do, without feeling selfish, guilty or overly worried that I might hurt or upset someone else.

It felt like failure. My failure to live up to other people’s expectations and I feared that they would eventually disappear. 

After all, if people liked me only because I would do things for them then it was liking what I could do not who I am. 

Today I realise that it isn’t my failure, but I have also seen a lot of people disappear from my life when I could no longer do things for them or provide as I once had. 

I think in western society the sick or disabled are quickly and silently given the label of needy and not being able to provide anything of value; Especially in a society that only values things. We can feel very disposable to those who we can no longer cater for or give to. 

It really is more a comment on society’s values and not our intrinsic human value. 

However, what can we do about it? 

I have thought about it over the years and have had the following ideas. 

1. We aren’t going to change opinions by feeling guilty and hanging our heads in shame. Owning the guilt that society would like us to is like claiming guilt for a crime we didn’t commit. A terrible waste of time. 

I truly believe that we owe it to ourselves not to buy into the idea that we are unworthy, disposable, unaccomplished or unnecessary. It is the illnesses which needs fixing, not our value or character. 

2. Continue to care for ourselves in the best ways we know how! What greater act of belief is there than self belief? To show people how much we treasure our own needs and care will hopefully teach others how they can enjoy interactions with us and how much we still believe in ourselves.

Example is a wonderful teacher. 

3. Do not apologize for things out of my control. It seems such a small thing doesn’t it? But it has far reaching effects. 

I used to say “sorry for not being able to ….” until I realized I was sick of apologizing for something I had no control of and owning something that was out of my hands. 

Today I replace “sorry I can’t” with “I hope I will be able to …. but if I can’t I trust that you will understand”. 

But if I know that I can’t do something I must openly and honestly say it. The sooner the better. No guilt. No shame. 

4. People will never really understand unless it happens to them… ever

So I stopped expecting them to. I don’t expect them to know what constant pain is like or what disability can feel like. They just don’t. I didn’t know what it was like when I was like them! 

If someone cares enough to ever ask me something about my challenges I will honestly answer them, but until then… 

5. Although this is not the life I would ever choose for myself, it must be lived in a way that I can try to appreciate. 

It is now my responsibility to look after me and look for opportunities where I can get some meaning and joy from living.  As opportunities and abilities have lessened, it makes it even more precious to use any time and opportunities for happiness that I can get; or try to get. It’s not selfish, it’s imperative

If I have one day a month where I am not in as deep pain, or able to move from my bed, you can bet your last dollar I am going to enjoy something nice for myself on that one day!

Even if many people out there no longer see us or cherish us as we are now, we have to. And I hope we do. 

Gentle hugs, 

Trish. 

Flare Facts 

If you happen to have an Autoimmune Disease you will instantly and deeply recognise the term flare or relapse

They are words that strike fear into the hearts of even the most stoic of fighters. 

But if you are not an Autoimmune you will understandably not have a clue what these terms really mean. Please consider yourself extremely lucky that you don’t know. This piece is my attempt to bridge that gap in understanding. Or at least to try. 

Flares and relapses are painful enigmas to sufferers and doctors alike because there is no way to control them, predict them or cure them. You simply have to hold on and hope. Some medications can help ease them but it really is mostly unknown. 

Everyone experiences flares in their own way, although there are some common themes. 

1. We never know how long they will last. 

Sadly this can be the most painful part because it can wear you down emotionally while you are waiting until you finally feel some relief. This may be a day, a week, a month or many months. Sometimes even years! 

2. We don’t always know how they will affect us. 

For example MS flare or relapse can cause a variety of different symptoms from vision issues, migraine, tremor, incontinence, fatigue etc and RA flares can cause joint pain, fatigue, heart problems and chest/lung issues. It really can be most unpredictable. 

3. Sometimes the medications don’t always work. 

The traditional medications like IV steroids and anti inflammatory medications may not always ease the pain of a flare or make it more manageable and can even causer other issues to arise. For example I am no longer able to use IV steroids as they cause some very frightening reactions. Many others experience these too. High doses of anti inflammatory meds and antibiotics can impact on our stomachs and those with IBD issues. 

4. The emotional impact can be hard. 

Not knowing when you will return to a better state of being and enduring harder pain and suffering can be torture. It wears you down emotionally. Many of us suffer with the extra burdens of depression and isolation during these times. Understandably. 

5. No one knows exactly why they happen. 

It could be anything from over exertion, a stressful or sad event, a flu, weather changes, or it could be your body simply misbehaving like a petulant child. No one will ever really know but we try to find some triggers and avoid them at all costs. 

Hence we may stay away from crowded places, stressful people, taxing events and demanding situations. 

A flare can be understood as a worsening of a current symptom. Ie. Swelling, pain, tremor, fatigue etc or a new symptom that may arise suddenly. Ie. Kidney pain, uti, incontenance, fever, swallowing problems, balance issues etc. the list is endless. 

Unlike many other diseases, Autoimmune diseases are rarely a stagnant thing. Over time they will generally progress and the progression is also extremely unpredictable. 

We all hope for remission and achieving a state where we have some control over our disease activity. But this is rare and for those who have achieved remission or remain high functioning we genuinely hope that this will remain for as long as possible. 

My own history is one of relapses, and slow but steady progression over many years (specialists predict that it is more like twenty years) until one day it decided to speed up very quickly. I know many people with the same history. However I did not know how many until finally being diagnosed and connecting with many millions of people around the world. All fighting in their own way. 

My current flare is one of joint pain, extreme fatigue and nervous system malfunctions. How long will it last? I don’t know. I truly wish I did. How long has it lasted so far? Five months and counting…

Because we never know we have to try so hard to train our minds to live for now and focus on each moment. Constantly hoping and believing. Finding comfort and strength in the little things in life. 

And we do try to everyday. 

I hope that this has helped to bridge the gaps in understanding for those of you who don’t have an Autoimmune disease but know or love someone who does. 

You are more precious to us then you will ever know and we hope that one day you will understand a little more what it is like to be in our shoes. 

Gentle hugs, 

Trish.