Petitions For Help 

Please consider lending your support and share. 
# New Petition # 
If you can help lend your support for the use of online technology tools i.e. Skype etc for patients too remote and/or too sick to attend specialist consultations (specialists, psychologists, GP etc) we would love your support and assistance. 
All online petitions will be sent to medical governing authorities in each country.  
Many thanks. 

Trish. 
http://www.gopetition.com/petitions/using-technology-for-medical-consultations-for-patients-too-sick-to-travel.html”>Using technology for medical consultations for patients too sick to travel | Online Petition</a>

Let’s Talk


Some of the hardest things with these diseases is knowing what to say to our friends and loved ones. Sometimes words just can’t explain a lot of what is happening to us, so we tend to say nothing. At least I do anyway. 

People’s expectations are that over time we must be closer to curing ourselves, getting better or at least making a lot of improvements. It seems a very hard concept that these diseases can, and may, get worse over time not better. 

I can’t tell you all the times I get asked “so are you getting better yet?”

 (Sigh) 

It generally means that most people still don’t understand the nature of Autoimmune diseases and they are unaware that many can progress or worsen over time and rapidly. Why? No one knows. Even specialists. 

It is also the reason I try hard to avoid talking to people as I am now at a point where I don’t know the right way to say I am not getting better, things have progressed / worsened and I am struggling to manage and cope day by day. So I often take the easiest way and avoid talking completely. 

I know that seems like a radical thing to do but I can’t handle the emotional and physical challenge of repeating this information over and over AND then address the flood of questions that follow. E.g. Why? Have you tried…? What did the doctor say? What do you eat? What do you do for exercise? Are you giving up or taking the wrong attitude? Is it something you are doing wrong?…. and so on. 

Just trying to cope and manage the everyday challenges is my full time job. Yes. 24/7. Which often means I don’t have entertaining news to share or stories of adventures and fun filled drunken nights. It often doesn’t leave a lot to discuss and I am sure most people don’t want to hear what I am really doing day in and day out. So I have become a grateful listener. 

I will try to post updates on Facebook and social media so I don’t have to repeat what is happening on the health front. But that isn’t always as effective as I would like. When people don’t respond I have always assumed that they have read my update and are aware of how things are going. I hope that’s the case anyway because it can be so painful typing out an update or tiring writing a message. 

Most times when I speak on the phone or in a chat room I prefer not to talk about health issues at all. This may sound sad but it’s very true. 

It’s not like a child where I can take joy and pleasure in discussing what it is doing and how it is progressing and growing. I don’t have any nice things to say about my illnesses apart from some powerful lessons that they have taught me. I mostly wish they were not in my life and that there was a cure. But this is not the case currently. 

I try to talk about the weather, world issues, pets, hobbies and so forth but this can feel quite repetitive at times too. And there isn’t a lot to be discussed on those topics either. 

It is quite hard when I realize that I can no longer share many happy events or milestones and that I must now become the eternal listener for the rest of my social life. In many ways it can feel like an unequal relationship when they are one sided. Thankfully people don’t mind at all that I now just listen and empathize with their life events. Most people won’t even seem to notice. 
I have always liked to encourage and support my friends and loved ones. Thankfully that hasn’t changed and I just find myself doing more of it in conversations. 

I also find conversations and updates about my health very difficult with my specialists and medical professionals. They also want me to tell them how much improve I am and how their treatment plan was successful. They don’t like hearing that things haven’t improved and I feel like they consider me to be not a good patient if I don’t respond as they want. They don’t know what to do when things get very complicated. Although they should know that these illnesses are complex, difficult to manage and progressive, they always seem to be surprised when I share the realities of living with several diseases all attacking me at the same time. Thankfully fellow sufferers (millions of us) understand and empathize. 

Not responding to medications as they would like me to also leaves us in a difficult and awkward place. I have now got to the point where I am telling them what I would like to try next or which drug I would like to trial, but I am never sure whether this will help or not, I am really just hoping and doing my best to stay hopeful. 

For all these reasons I tend not to talk on the phone that often and my husband has become the messenger for many of the updates with loved ones.  However over the past ten years few people call now and many autoimmunes experience this as their reality. We must accept that relationships can be severely impacted by these diseases. 

It is also true that I am unable to talk on the phone for long without becoming tired, confused, exhausted and in pain. I never tell people this because I am not sure how much they would understand these concepts. So a text message or a social media update have become my preferred forms of interaction until the rare day that I may have the energy and opportunity to speak or meet face to face. It is also worth mentioning that the rare time that I am physically able to meet socially, most people assume that I am like this all the time and I look and feel like this all the time. Nothing could be further from the truth. A simple coffee and catch up may take me days and weeks to recover from, so they are incredibly meaningful to me. 

Every Autoimmune sufferer dreams of the day we are told that the cure has been found, but I also dream of the day that the rest of the world understands more and appreciates more what daily life can be like for autoimmunes so we don’t have to feel so isolated and disconnected from those we love and cherish. 
Gentle hugs, 

Trish 

RA Blog Week – Overlap

The topic of Blog Week about overlap is so incredibly complex that it would make even the most experienced medical specialist run for cover, and they do! 

It is not uncommon that autoimmune sufferers can be sent to several different medical specialists because many of us have more than one Autoimmune illness or a systemic illness that will impact on several organs or areas of our bodies. 

My personal experience is that I currently have a Neurologist, Rheumatologist, Gastrointestinal specialists, physiotherapist, urologist, Opthamologist, Gynecologist, Orthapedic Surgeon and primary carer. It’s so incredibly complex! 

I try very hard to ensure that each specialist will receive all my recent blood work results, latest symptoms, current medicines and that they communicate and consult with each other. However this rarely happens no matter how much I may try. I carry copies of my medical records but the sheer size of paperwork is more than anyone can manage and more than any medical specialist will look at let alone take on board. 

Overlapping specialists is very hard to coordinate, especially when you are unwell and struggling with pain and symptoms. There is also a tendency to be labeled as a complex patient and once that happens it will mean that all of the specialists will literally go running for cover. It has made my husband and I want to give up on more than one occasion but often we can not afford such a luxury. 

And then there is the issue of overlapping symptoms. 

Some autoimmune diseases have very similar symptoms e.g. Fatigue, nerve pain, fevers, inflammation, numbness, nausea and muscle weakness. If you have more than one disease and you experience symptoms it can impossible to know which illness it belongs to and therefore which specialist to consult! There are many times I have been completely unsure of which illness might be flaring or if it is another issue entirely. E.g. Flu, infection, virus etc. 

the life of an autoimmune sufferer is incredibly difficult and complex that even people with other chronic diseases may not completely understand and often they don’t. 

Yet there is still another overlap to discuss and that is overlapping medications. 

Many of the medications used to treat Autoimmune diseases, regardless of which one you may have, are very similar in their function and protocols. They include pain medications, corticosteroids, strong immune suppressants, chemotherapy drugs, ivig, anti depressants, muscle relaxants, NSAIDs, beta blockers and so on. 

Many different autoimmune diseases may use many similar treatments and still have mixed outcomes. Nothing works for everyone all the time. Sometimes the side effects can far outweigh the benefits. 

In the circumstances where you may be taking one drug for one disease, it can cause a rise in the activity of another disease. I have found myself in this position on many occasions. It can be heartbreaking and terribly frustrating. 

Another overlap that I will also mention here, briefly, is if you happen to have several diseases and then join several relevant support groups for help and understanding, whilst each group may be helpful in dealing with a particular aspect of your struggles, very rarely will any one group understand all the issues you may be trying to manage. Thus you are both inside each group and outside it. It can feel terribly isolating. At least it has for me.  

At this current time I belong to several different support groups, all with helpful intentions and yet focused on their specific areas of concerns but it is hard when you feel that no one inside each group understands the whole you and the realities of what you may be going through. 

Overlap can be an incredibly difficult term to explain and a very unique issue for each different autoimmune sufferer. It is for this reason that I have often questioned whether dividing all autoimmune diseases into over 100 different diseases has been helpful for the autoimmune community at large when many sufferers can experience so many overlapping issues, symptoms and treatments. Sometimes I feel that there may be some real benefits in coordination and focusing together, with an overarching purpose and appreciation of the person as a whole. 

Gentle hugs 

Trish. 

Autoimmune Etiquette 

Years ago I managed to upset a fellow autoimmune sufferer by suggesting that perhaps [they] may be higher functioning than I was. I use this term to describe someone who might currently be more mobile and more able to do somethings e.g. Walking, eating and running than someone else. [They] felt deeply insulted by my term and felt I was attacking their struggle and their illness. I was deeply surprised that this had occurred, although I have seen it happen quite regularly in groups. When it comes to my advocacy and feelings towards my fellow sufferers than I think that if someone really knew me or my character than they would have no doubt of my intentions. I still believe that as I write and advocate now. 

I will never please everyone and I will never assume I speak for everyone either. 

We are all so different that we can never assume that any one person is the gold standard for any particular autoimmune illness. We can vary so dramatically in our abilities and flares and treatments while still sharing some similar diagnosis. I personally believe no one should feel that it is a competition, yet many do. 

Why? 

Perhaps because these diseases are considered invisible illnesses by many that sufferers feel that it is a real battle to get people to believe their suffering or struggle and sometimes they feel any suggestion that they are not as affected as someone else is an attack on their credibility. This may be true from the able bodied world, but I don’t think many fellow sufferers doubt each other or consider these illnesses a competition. I truly believe that anyone who has suffered any long term pain rarely looks down on another for not suffering enough!- I really hope they wouldn’t anyway. It’s not something that you would wish upon anyone. 

However the reality is that many sufferers vary dramatically in their level of ability or disability. It’s just the reality of it. Nobody knows why someone will be more impaired than another or experience more flares than another. It is a medical mystery. 

Someone with several illnesses may find themselves severely limited in their abilities to live independently and function, and these things become important when it comes to planning the level of care and support you will require day to day. If you happen to be a sufferer who can still drive, walk, dress or work, albeit with pain, than this is different to someone who is living bedridden and requires a carer in order to do the very basics e.g. Showering, toileting and eating. 

No one wants to be that disabled and no one should wish it on a fellow sufferer, as it is not a competition. Ever. 

I have witnessed how quickly an illness can change and become more systemic or debilitating in my own circumstances and with other sufferers. These diseases can be terrifying if we try to imagine what could happen in the future. Sometimes it’s so cruel that we don’t know what will happen. So we try to make the most of anything we can do for as long as we can do it. Cultivating good etiquette amongst sufferers where we celebrate someone’s abilities and opportunities while at the same time being able to recognize the difficulties and struggles of another is essential. 

As I write this I am aware that there are higher functioning sufferers than me and that there are far more disabled than me, and with less support. It is all person specific. But it’s not a competition either. Although I am fortunate to have a husband that happily carries me, feeds me and assists me in many ways without a moments thought, I dearly wish I didn’t have to rely on him. Deeply wish!

I would encourage the autoimmune community to not feel threatened or competitive with each other. I recall Theodore Roosevelt, a president known for his exuberant personality, range of interests and achievements, is quoted as saying: Comparison is the thief of joy. I believe this whole heartedly. 

It isn’t easy when we see someone who may be able to do things that we are no longer able to do. I have experienced these feelings on several occasions myself. I think it is human. But although I wish I could do something I can’t do anymore, I wouldn’t wish impairment or loss of ability on anyone. Not for one second. 

We are all different but I feel like the common bond we share in having these painful and frustrating diseases is enough to lay the foundations of respect and empathy and I think that how we treat each other can be a blueprint for how we want the outside world to treat us. Respect is essential. 

Gentle hugs, 

Trish 

Sexual Evolution. 

I was looking through some old pictures and thinking of some old times when an old memory was awoken somewhere in the deep recess of my mind. A memory of another time and another person. Dreamlike and almost unreal. 

It was something long forgotten but so significant that it left me without words for a very long time. 

What I am about to discuss is a topic that is seldom mentioned in chronic groups and i have never discussed it with even my closest friends. Not because I am embarrassed. Far from it. But because I doubt they could truly understand. Perhaps it would be impossible for them to truly understand? Worse still, they may dismiss it as not relevant and that would be much harder still. 

You see my past self enjoyed feeling sexual and sexy, but rarely would I use these words to describe myself anymore. Sexy and attractive is seen as the exclusive domain of healthy women. Outgoing women. Able bodied women! 

But not me. Not anymore. 

Oh I might be able to put on a nice dress or slap some make up on now and then, but who would see me rolling along in a wheelchair and look twice at me? Who would think that such a person was sexy? Who would even want to take the time to get to know my personality if they saw me seated up in a wheelchair? The reality is that it is not many. 

I know that this is a lot of what people mean when they say you are lucky to have your husband. It is a whole unspoken dialogue.  

Nowadays I could look like Angelina Jolie, but if I was in a wheelchair or scooter I might as well look like sponge bob. Or at least that’s how it feels to me. The messages out there aren’t exactly uplifting or reassuring and they are quite clear. Pick up a magazine, watch a movie or look at a billboard and you will see what and who is sexy. 

Right now I am married. Happily married. My husband is wonderful. He loves me dearly. I love him dearly too and so I am not in the dating scene… But what if this weren’t the case? 

How would I cope? How do single women who are mostly bedridden cope? 

I am aware that there are those women who are happily single and disabled. There are also many that believe that a woman’s worth should not be judged based on her abilities. I absolutely agree! I am a passionate feminist myself. But those are our goals and not necessarily today’s realities. Today we are still inside the system and playing inside today’s rules

In today’s competitive world of beauty and women trying to look younger for longer, how does the disabled woman reclaim her rights to feeling desired and valued? To feeling attractive and sexy? 

How many of the worlds sexiest women are sporting walkers and wheelchairs? 

The more invisible your illness or disability is, then perhaps the better off you are. The more you can still function then the more desirable you may be. However with progressive illnesses that may not always be possible. My own illnesses went down hill very quickly and runs a very unpredictable course. 

My days of dancing, dating, galavanting and impressing may be far behind me now. Even keeping feelings of self worth in a happy marriage can be a difficult challenge sometimes. 

Many women want to feel attractive, appreciated, special, respected and desirable, however in the case of chronic illness it is almost seen as something that you will likely have to let go of. But it won’t ever be said in those terms or as openly. 

Autoimmune diseases affect more women than men. We are generally looked at in very different ways socially than men. That’s why I am committed to bringing issues up that may be pushed aside by many others.  

I recently watched a movie Me before you where a young beautiful woman falls in love with a rich, young, attractive quadriplegic man. Change the roles and make the quadriplegic a woman and would she be swept off her feet by a dashing young man? I think you might have a strong idea of what the answer might be. The real life answer. 

Unless you have secured a partner before a chronic illness than your chances are astronomically diminishing that someone will be attracted to you or consider you desirable as a chronic sufferer; Especially if you are severely limited physically. Even falling ill after you are married is hard enough and will redefine your relationship profoundly. 

I am mindful that marriage counseling is focused at marriages that might have faced infidelity or addictions, but few explore the pressures and changes caused by chronic illness and disability. 

There is a suggestion, perhaps an urban legend, that if you are a woman than you are 10 times more likely to be hit by a bus than find a partner after 40 years of age. What about a disabled 40 year old woman? What are her chances? 

I try very hard to promote positive images for women with chronic illnesses and self respect. It is my passion and mission since becoming chronically ill. If I can make a small difference in how we think about ourselves, expresss ourselves and respect each other than I will be a very happy advocate indeed. But it occurs to me that alone I can’t change all that needs to be changed. It’s a global issue that is dependent on so many different people all over the  world. 

I hope that just sharing this and making myself, and others, think of this topic that it will start us down a path which will beneficial. 

Gentle hugs, 

Trish 

RA Blog Week – tips and tricks 


Today’s topic is about how we manage our lives and what we use to assist our physical limitations. Chronic life hacks. 

It is important to note that each person may face various levels of physical abilities and although they may share the same disease/s they may be at different stages with their abilities. I have learnt not to assume.  

My own particular illnesses have combined to cause me to rely quite heavily on a few physical aids, and even more during flares and relapses. 

On a normal day I use TENS machines all day for pain assistance which I carry with me inside my clothing. I use a wheelchair and walking frame to move around and transfer as I can no longer walk very far and have balance issues and muscle weakness. A good wheelchair is worth its weight in gold and making sure it suits your needs is a life line. 

I have installed ramps at the entrances to my house so my chair can access the outside of my home. This is precious. Having an accessible garden is something that brings great joy and is worth the time to plan thoroughly. 

My foot drop is helped by a foot brace designed to keep my foot from tripping me over and fits inside my cushioned shoes. Shoes take on a whole new meaning when you rely on the warmth, comfort and ease of use. 

I also have an enormous pile of heat packs in various shapes and sizes which helps relieves pain in various joints. Including hand heat packs for my painful fingers. A wonderful ice pack can be fashioned from frozen peas kept on the feeezer. 

I will often use a headset when talking on the phone so I don’t have to physically hold a phone to my ear, and the voice mode on the smartphone (and Siri) can do basic texting by simply speaking into it. 

I carry my smartphone at all times in case I fall or need assistance I ensure that it has a good safety cover in the even of drops and spills. My handbag is a vertible treasure trove of meds, lotions, eye drops, water bottles, change of clothes and incontinence pads. If I ever require pain relief in a hurry then I can find these inside various pockets of my bag. I will also find meal replacements and eye masks for when my IBD and Optic Neuritis strikes unexpectedly. 

In my shower I have a stool, pump bottles of body wash, so that I don’t have to hold anything and an electric tooth brush so I don’t have to manually brush ‘scrub’ my teeth. Hand rails are throughout my ensuite and I transfer myself strategically during each shower. My shower is a movable shower head and can be lowered as needed. 

Beside my bed I keep everything I would need for a day when my limbs refuse to move; MS has a way of doing some very odd things to you. So bottled water, eye drops (Sjogrens) and meds will always be at hand. 

However much I try to remain as independent as I can I would not be able to do all I do in a day without the greatest aid of all, my carer and constant companion, my husband. He really is the most treasured assistance of all as he will carry me to the bathroom, shower and dress me whenever my body will not cooperate. I would be lost without his physical and emotional support. 

This must also extend to my darling fur companions who have learned to guide me when my vision is going and alert my husband when I have fallen; generally by barking loudly beside me! They are also incredibly loving when my emotions are being tested by pain and frustration. 

A loving support system and understanding group is one of the biggest and best tips I could give and that includes connecting with others who may have their own life hacks and tips to share. Being able to share information is one of the greatest gifts that technology has bought to our struggles in this age. Learning from each other. Sharing and exchanging experiences would be almost impossible for me without the technology to join us all in real time. 

As I said, we are all different. Some of us may be high functioning and not need any of these tips, but I hope that whatever stage we are at and wherever we are, I will always hope that better meds and cures will be the greatest life changing event to happen to our future generations… until then we can all advocate and spread awareness. 

Gentle hugs. 

Trish 

RA Blog Week – emotions. 


Day one of Blog week is about emotions and how Autoimmune (chronic) sufferers deal with their emotions. 

I can only speak for myself, but i think this is a very deep topic indeed, made more difficult by so many different factors. 

Firstly, on a good day, my emotions can be calm, warm and fluid like the waters surrounding a beautiful island resort. On bad days, I can find myself drowning like a tiny ship being tossed around by some of the darkest, cruel and painful seas. Deep feelings washing over me as the pain engulfs me. 

Before chronic illness I was mostly a very independent, happy, buoyant and peaceful person. Someone enjoying life and the challenges and opportunities it presented me. That was before chronic illness. Also. I grew up in an place and with people who considered that emotions were a sign of weakness. A thing to be ashamed of. 

That was then and this is now. 

Today, as pain and disability ravages my body, I find my emotions are far more changeable and raw. I think prolonged pain and emotions are very closely linked.

Sadly this world is so very ignorant to the link between real suffering and emotions, for those with chronic illness and pain, and those who suffer the most in this world will often be expected to be silent and hide the pain for the benefit of others. 

Our frustrations and pain may also be dismissed as depression. It is not uncommon for doctors to regard our emotions and feelings of frustration and loss as depression. They will quickly offer anti depressants in place of listening and empathy. 

Why? I really don’t know. It’s a real mystery to me. 

The same people that will feel immense empathy and passion for a tv series or movie character will feel uncomfortable and disinterested in the pain of real people and struggles. 

The same people that will feel passionately about some of life’s most trivial topics will not feel anything but suspicion and disbelief towards some life changing events. 

Why? I don’t know. 

I think emotions are very person specific and whilst many sufferers may have become more stoic over time, I feel the opposite may have been happening to me and in my journey. 

As a result I have had to withdraw more and more from interacting with others as any of my emotions may not be acceptable any more. My feelings about my life and the changes that have taken place are not things most people want to aware or reminded of or generally interested in. 

Conversely, his allows me to distance myself from issues and topics that I personally no longer believe are significant. The trivial and materialistic topics evoke very little responses from me anymore. 

I have become very aware how I use my emotional energy and what I spend it on. 

A lot of people discuss mental health in relation to chronic illness and some may even be aware of the link that one may have on the other. It may be perceived that good mental health requires that we have tight control on our emotions or endeavor to hide and mask them for others, however, I feel as though the longer I have been ill and the more pain and suffering I witness, the more I feel the real benefit of expressing myself; like a pressure valve for all that is happening inside me. In the moment. 

I can allow myself to feel something and then let it pass. Like a storm. And feel release as it leaves. My emotional barometer may change more often these days but it is a truer reflection of my emotional state. 

As I said at the beginning of this piece, we are all different. Sometimes we feel for different things for different reasons. But I believe our feelings are what makes us human and can connect us in a world where we are slowly disconnecting and competing more and more. 

I like to think that my love and my tears are for the things that truly deserve them these days and I wouldn’t want to mask them from those I care about. 

Gentle hugs, 

Trish