Emotionally aware

I was talking to my husband yesterday about how I sense that people are becoming more and more reticent about sharing their true feelings and thoughts. They no longer share what is truly on their minds.

I wondered why?

Have we lost the art of communication and expressing ourselves? Do we feel that most people don’t truly listen or care? Or is it both?

I find myself saying less and less these days and sharing less and less about my life in general as I am not sure how this information is received or used. Most of the time I have wondered if sharing my personal views on life, the world, politics, health or goals is really of interest to people. Sadly I have seen that most people simply switch off or talk over you. Regardless of the motives I don’t see this behavior as conducive to sharing.

I also noticed that this has become even more prominent since my health changed. People seem to stop listening if they know your chronically ill as though I have nothing relevant or valuable to share anymore. This always strikes me as odd as it is often those who have serious illnesses or battles that are able to see the world in very different ways and actually have so much to offer!

I dearly wished I had listened more to those who had battled illnesses and health when I was younger but it was not the social norm to seek out their advice or offer empathy to such people. We tried to avoid such confrontations for fear of having our behavior or beliefs questioned. We didn’t want to confront the possibility that there are things in this world worse than not getting that job or going on that holiday. We don’t want to know that there are things that are beyond our control and that life can be unfair and painful.

Often it is the opinion of healthier people that our thoughts and ideas are devalued because we are no longer like them. We have fallen through the cracks and, worse still, it is all our fault. Our health is interpreted as character weakness. People also seem to think that by spending any time or listening to the chronically ill it may mean that they have to offer empathy or help. It seems to discourage people from interacting, it certainly discouraged the people that are not predisposed to helping or caring.

The social and political landscape is not a kind place for the disabled and ill either as invariably we are demonized in public policy and labeled as expenses and leeches on society. However if you asked any able bodied person what they would want if they became suddenly and permanently ill they would all agree that they would want care and support… a bitter irony indeed.

Whenever I find myself in conversation with the able bodied world I find myself restricted to topics solely about them and their reality. How is their job? How was their holiday? How are they feeling? What are their experiences? It seems irrelevant now what my thoughts and experiences are, contrary to when I was a healthier version of myself.

When I was healthier people listened with interest and engaged with me. I felt far more heard and relevant than today, despite the fact that I feel far more mature and grown as a person. My experiences and challenges have given me far more knowledge and depth than I could have ever imagined. It has given me more feelings.

I recall explaining to my husband that life for me now is similar to the matrix movies of the nineties where the protagonist becomes unplugged from the world of the matrix and sees life in a much more aware way then all other inhabitants who are still locked inside their realities. It was an analogy we both appreciated and agreed on.

But why should it be so?

Communications these days seem to be far more directed at goals. People want to hear from and talk only to those that support their agendas or that can help them in some way. Today there is this need to be perpetually busy and people seem to focus all their attention on acquiring and obtaining rather than being and growing. Communication is limited to these pursuits and it doesn’t seem to have a qualitative substance to it. In short, there is far less emotion and feeling in communications today aside from those that the media will direct and design for us.

The less people are feeling and sharing the colder and more isolated we are becoming and I am convinced that this will impact even the most able bodies people and rises in mental illnesses as well as physical illnesses will ultimately result.

I feel confident in saying that I, like many other chronically ill survivors out there, prefer conversations with meaning and emotion (even joyful and calming) rather than much of what today has on offer, which is why I find myself talking and engaging less and less in the mainstream rhetoric.

I am careful with who gets my time, energy and emotions now as today the most precious thing that I feel I have to offer are my thoughts and feelings. Therefore I am committed to only sharing these with those who truly appreciate it and those who also offer emotional depth. I know that I can’t be alone in these standards and I commend all those out there that have placed similar value on their time and emotions, regardless of their health status.

I would much rather have fewer social interactions with real meaning than have numerous ones that are superficial and unfulfilling.

Gentle hugs,

Trish

Critical Care

After more than a decade of having challenges with several autoimmune diseases and other related struggles I have found that I am less and less inclined to seek medical assistance than I ever was before. I am now at the point where I have told my husband that unless I am on my last breath I will prefer to stay at home and ride it out. Sounds strange to some of you but to others in a similar place as me it will sound perfectly understandable.

After a decade of running back and forth to doctors, taking tests, taking meds, struggling with pain and still having my abilities diminish further and further I have decided that the one thing I can have control of is how often I put myself through the pain and exhaustion of medical intervention.

I simply choose not to!

I have always been silent about this as though I must be doing something wrong by choosing not to constantly throw myself at the feet of the medical profession because people may judge me as being bad for not jumping through endless hoops when nothing the medical profession has provided has been able to restore me to my former health or even stop my body from worsening over the years.

However people like to judge those with chronic health and love blaming them for everything ie. If we go to all the doctors and take all their meds than we are hypochondriacs but if we choose to get off the roundabout then we are bad patients and don’t want to try and get better!

I choose to do what works for me

Today I rarely go to doctors at all and will only go under the most extreme circumstances. That means I spend most of my days struggling, agonizing and pushing myself to cling to whatever quality of life I can have. I am sure that there are many more like me than we like to admit.

As flares occur I have learned to just wait them out on my own, no matter how long they take, even if that means years. I have learned how to administer prednisone bursts for myself and manage my pain as best I can. I take the meds that have proven useful and all the current autoimmune DMADS, and I will occasionally give bloods to the pathology labs to ensure that my meds have not become more toxic and that I am not missing anything obvious. And that is about it…

I have kept in touch with several fellow autoimmune fighters in similar positions who have decided to take the same approach and for very similar reasons. Their secondary progressive MS means that there is no real treatment options available and they must also treat their diseases symptomatically. Therefore they too ride out the ups and downs and they also only go to A&E when things are desperately bad.

Over the years I have encountered so many different challenges including optic neuritis where I lost my vision and yet I waited it out at home. I have suffered through several boughts of colitis and taken antibiotics and prednisone for myself until the symptoms abated. Many other IBD sufferers also keep these drugs on hand with them and must manage symptoms and flares for themselves too.

I regularly lose movement in my limbs, suffered vertigo that sends me crashing to the floor and trigeminal Neuralgia that is like electric shocks through my face and is blindingly painful (to name but a few things). As sufferers we learn that what doesn’t kill us means we learn somehow to cope, alone and at home. Somehow. If we went to hospital every time we were in desperate pain or struggling to move we would be there more than we would ever be at home.

I have learned to manage a lot by myself and my husband has had to be nurse, carer, companion and psychotherapist all in one. These are just a few of the skills we have to learn as sufferers along with many many more.

We do our own physiotherapy, our own stretching, our own research and work hard on pushing ourselves to stay as mobile and as able as we can possibly be and that’s what we do every day, with or without doctors or support.

In the past decade we have never asked for help, assistance or money from any of our friends or family but we have offered it many many times, even when we couldn’t afford it. Many sufferers are placed in similar circumstances due to the way in which they are judged or treated should they ever ask for assistance, we can become even more ostracized, so we learn how to continuously suffer on in silence.

It is for these reasons my husband and I are in a very special position to be able to say that we (like many other sufferers) may have struggled terribly and may have fallen many times, we may also have made mistakes along the way but we keep providing the best care to each other that we can, and so far there are few other places that can match this level of care; even in hospital.

I write this in praise of all those out there who are struggling and yet still caring for themselves as best as you can every day. It is a travesty that your efforts don’t warrant the type of understanding and recognition that you deserve but for as long as I can I will always be trying to shed some light on such people and all they go through because you are all amazing and have much to be proud of.

If only all care was as deep and amazing as the care we must provide ourselves through the hardest battles that there are in life.

Gentle hugs,

Trish.

Raw And Uncut

I never imagined I could EVER have the courage to do this, and even now I still feel so incredibly nervous, more than I ever like to confess.

In this age of perfect selfies and putting on glamour looks for the world it’s completely unimaginable that someone could share themselves at their worst and less than perfect… yet here goes!

My friends and loved ones may have noticed that I no longer share pics of myself these days and this is because one of the many symptoms that I encounter has progressed dramatically in the past twelve months, some of these symptoms are that my eye now droops terribly and almost every day now. I can hardly see out of it and as well as this the left side of face is now constantly ‘heavy’ and weak. Additionally, my arms and legs are also unresponsive and ‘heavy’ such that I struggle to hold things and move around.

It makes my very sad and incredibly frustrated and I had become almost afraid of people seeing me like this now as it is not the image I want people to see or remember me by.

Perhaps it is vanity?

Perhaps it is lack of confidence in some way?

It is very likely both.

However I have also asked myself “how will people understand why I can’t visit with them, go somewhere or even talk on the phone if they don’t know what is happening and why I am doing what I am doing?”

I wanted those whom I love and care about to know the truth no matter how embarrassing or ashamed I may feel at first… it has been a difficult dilemma for me although I am not sure what others may think upon reading this. I don’t like the fact that this fear has kept me prisoner for so long and I am the type of person who has always pushed myself to face some of the things that scare me most.

In the end I persuaded myself to believe that “those who truly love me will accept this revelation and keep loving me and those that don’t love me will really not be missed in the grand scheme of things… did I really need them if they could judge me for something like this? The answer is obvious!

So here it is!

Me.

Unedited and completely raw… and very, very nervous.

I guess I also felt that if I wanted to encourage people to be open and accepting about their illnesses and all they go through than I must be prepared to walk the path and practice what I preach.

I truly hope it will prove the right thing to do.

Time will tell

❤️❤️

Much love,

Trish.

Strangers

People will never cease to surprise me and over the past decade I have marveled at some of the interactions and reactions to posts I have made either privately or publicly.

Simply by reading my blog people have made assumptions or judgements about what sort of person I am and what sort of chronic fighter I am. Some people have remarked that they thought my writing was not inspirational enough, too depressing, too candid, too open, too negative and so and so forth… I personally find it quite interesting and surprising that people can draw any sort of impression of me personally without knowing me on any sort of real level.

It would be quite surprising for people to learn that aside from on my blog and a select few trusted people I do not discuss my illnesses or progress with anyone. There are several reasons for this and chief amongst them is that I have many more aspects to me other than my illnesses and although my body may have changed my mind is constantly thinking and I prefer to spend time discussing ideas and experiences than my ongoing health challenges and pain.

The other factor people seem completely unaware of is that I don’t invest much in what people think about me or who I am as a person based solely on social media. It is my experience that no one is anything like their social media facades thus any criticisms, assumptions, judgements, appraisals and suggestions are all taken with less than a grain of salt.

Joyfully I have made several wonderful connections from social media which I am truly grateful for but it takes time and real discussions in order to get to know someone and there is no easy or quick way in which to get to know someone better.

It is the growing trend that society forms superficial judgements of people based on a picture, a comment, an impression or a post on social media but to me this seems dangerously simplistic and irrational. I prefer to take time to form any sort of meaningful impression of others and it has served me far better in life.

Thus I reject people’s assumptions of me and I have built quite a strong resilience and detachment to people’s comments and actions, especially for those who haven’t even met me!

It always surprised me in the past when people have judged something I have said or done or even misinterpreted something without even knowing me or seeking further clarification. This seems to be a growing trend in society today and so I have learned how to ignore such things. It is a sad reality of today that most people tend to construct a narrative which suits their own agenda or belief system. I wish this were not true.

Even people who have known me in the past can not possibly know who I am today without having spent time with me recently. I find this quite a frustrating and difficult reality but have done my best to accept it regardless. It makes life exceedingly more complicated when people cling to shadows of us that are long gone and superseded.

Lives are changed so much by illnesses and I have found that I have changed so dramatically in the past decade that it is hard even for me to comprehend, let alone someone who knew me previously or have never met me at all!

Gone is the naive, people pleasing, easily hurt, trusting, impulsive and active person I once was. Today I am a far more cautious, careful, resilient, accepting, considered and stoic woman who does my best each day and constantly seeks ways to understand and enjoy life as much as possible. That is now my new focus and personality.

I still try to see the best in people and it is my nature to endeavor to spread kindness and sincerity but I no longer waste these resources. Illnesses has taught me not to waste anything and treat all things as finite, especially time. I think long and hard about what I am willing to waste my time, emotions, care, loyalty, money and health on. It is the burden of many chronic fighters that we must now look at these resources in very different ways.

One prominent feature about my life today and my changed attitude is my ability to ‘move on’ from things and people that will only cause me further pain and suffering. This has been something that I have been forced to do and an essential ability for anyone facing a life with chronic illness. Our bodies can no longer support toxic relationships or make excuses for people who try to strip us of our dignity and happiness. We must learn how to simply move on from them and refocus our efforts and affections. This is not always easy but it is vital to coping.

Today I am amazed by how I can recover from an unkind word, a harsh and unwarranted criticism, an attack on my credibility and character or bounce back from rejection, unkindness or selfishness from strangers, family or friends. In those moments I am faced with a simple choice of whether I want to dwell and suffer from the actions and motives of someone else or embrace the power and dignity I can hold for myself. I choose dignity and peace now.

I recently asked my husband what changes he had noticed and what things remain and I was surprised to learn that he said my spirit, my creativity, my loving nature, my sense of humor, my kindness, my generosity and my intelligence still burns deeply and strong but I have become stronger, careful, cautious, patient and more resilient than he has ever known in a person. I was surprised and appreciative of his assessment as I believe that through all we have been through he knows me better than anyone else in the world.

We can’t possibly know someone from a picture, a comment, an outfit, a meeting, a blog, a social situation or by someone else’s assessment. It takes time to get to know someone. Time, effort, listening, caring and going through many different life experiences to have any sort of knowledge of someone. Words are just simply aren’t enough. We should never let anyone actions, comment or judgements of us ever influence how we feel about ourselves and our future. Furthermore it may take people a long time to get to know us but it can take us a lifetime to truly get to know ourselves.

Gentle hugs,

Trish

Thank You

I would like to take a moment on IWD (international Women’s Day) to thank all the readers, followers, fellow fighters, bloggers, friends, loved ones and supporters for all you have done over the years to make Autoimmunitygirl what it is today.

More importantly I would like to thank you all for helping me along the road of chronic life and helping me cope with some of the terribly challenging demands chronic Illnesses have presented me to date… and those I have yet to face!

I truly believe that I can never fully express what connecting, interacting and sharing has meant to me over the years and it has been so important to me in being able to grow my confidence and understanding of myself during some of the most difficult times in my life.

Since starting this journey with blogging there have been so many times I have wondered whether I should continue or whether it would be better if I simply gave up. I have often wondered whether my little blog actually made a difference to anyone or if it helped the cause of those with Autoimmune illnesses anywhere in the world. My prime goal has always been to help, support and advocate for these terrible illnesses and to help sufferers feel as though they are not alone, that they are part of a larger community and that there really is strength in numbers.

I wanted to help myself and others find dignity and respect after all that we have been through and all that we had lost. Illnesses are some of the hardest battles in life because it never ends and, worst still, we battle ignorance, intolerance as well as our own bodies.

My own experiences have seen people doubt me, tell me that they are embarrassed of me and also try to discredit me and I also know that this has happened to the majority of sufferers out there because I have seen your comments, read your own stories and felt your pain inside support groups where we have all shared the hardest, cruelest and most crushing realities in our battles.

I have always believed that this wasn’t good enough for me and it wasn’t good enough for all those hundreds of millions of fighters out there! I felt I had to do something and I felt I had to write something. I can only hope it will be a small step in a long line of something’s that will lead to change and improvements in the way chronic sufferers are treated and seen.

I have stated repeatedly that I would never want to speak for all autoimmune sufferers or pretend that I embody everyone’s voice and feelings on a range of topics, but I do hope that this little blog has given some the chance and the motivation to speak for themselves and to believe in their own voice and validity.

I have since learned that being an advocate and trying to drive change is not easy and sadly you open yourself up to further scrutiny, rejection and condemnation. Advocacy work is hard and I have learned that I was wildly naive in the beginning despite being good intentioned. I no longer believe advocacy and blogging are easy and it takes a real stoic attitude and self belief that no one prepares you for.

I would encourage anyone out there to look deeply at themselves and remember their prime motives before they undertook advocacy work because many times you must self sacrifice, bear your soul and see no real reward for your efforts other than those you give yourself knowing that you have tried to do something for the greater good. Sometimes that can feel not enough when you face isolation and criticism and it is far easier to give way to your doubts. In my own case I have had many experiences of soldering on alone in my life and I have also had amazing role models that have shown me what real strength is. It is also out of love and respect for them that I write what I write. Their examples of courage are more important to me now than the examples of cruelty, intolerance and selfishness that I have seen.

Learning how to truly see yourself in new ways and rebuild your life after you have undergone such a dramatic change has been without doubt the hardest thing I have ever had to do. It’s been emotionally painful, physical demanding and has been a 24/7 battle that I can not even hope to describe within the lines of these blogs, but without the understanding of the greater chronic community, my loved ones and my inner spirit I know that I could never have made it this far.

Never.

So thank you to all those reading these words and I hope that this little blog has helped you find your own words or helped others understand just some of things that people who have life long health battles deal with everyday of their lives.

Thank you.

Gentle hugs,

Trish

Memories

For many years now I have struggled with memory problems and it became a long standing joke between my friends (and loved ones) and I. I always attributed it to either being too busy, too distracted or being overwhelmed, maybe all three, but in recent years it has increased considerably.

Back then I did whatever I could to try and help by prompting myself with notes, reminders, alarms and whatever else I could to overcome my memory issues. I was pretty good at developing work arounds and it was only under certain circumstances that memory issues became torturous, as was defiantly the case during university examinations. During times like these when memory and recall had to be accessed without delay or assistance those times became particularly disastrous!

However I continued to develop little aids like calling everyone I knew angel so I didn’t have to recall names or look embarrassed when I confused a persons name. I also wrote notes to myself all the time and even wrote on my hands for important events or reminders.

In the past several years my brain fog has accelerated to a humiliating level and it saddens me deeply to admit to many of the things I am about to admit to, but I also hope it will serve a greater good and perhaps even help others in a similar situations.

These days I have very limited recall and have forgotten so many of the simplest of things including my own middle name. These days I struggle to recall birthdays, anniversaries, addresses, names and phone numbers and most recently I left a pot on the stove until it burned dry and set off all the fire alarms in the house, even after all this I proceeded to blame my husband for causing it as I had no memory of cooking at all. It is even more embarrassing to admit that I was simply boiling eggs and this should have been a three minute procedure. Three minutes is often long enough for me to forget entirely what I am doing.

I regularly forget to take medications or even the name of my medications. I forget text messages and to answer emails or phone calls. I enter rooms only to forget why I am in the room and this will happen all day, every day.

Most sadly for me is that I have forgotten how to spell, what words to use and the meaning of words. Without spell check I would never be able to blog but even spell check has limitations (ie. Their, there etc). All my life I have loved to read and write but it is a Herculean task now and my husband has started reading for me and to me. I also use audio books which is an absolute godsend.

I have forgotten to undress when I showered and I have struggled to remember how to turn the television on. Sometimes talking to someone for any length of time will often mean I have forgotten what I called for and what I am talking about so I usually let the other person speak or write down why I called. I also regularly forget what I was saying mid sentence and I will often have to make several attempts to tell my husband something… Thankfully he is a patient man.

My husband has been tortured for years now by me constantly asking him the same questions over and over and initially he thought I was deliberately being rude or difficult but as it become obvious that I genuinely had no memory of asking him he has settled to a new level of patience that I can only imagine is close to remarkable! I now begin a sentence by saying I don’t know if I have asked this… and he smiles kindly and answers me over and over again only for me to return at a later date.

Some words are just too hard for me to remember now and I will agonize over them. Words like wheelbarrow, microwave and shovel will leave me speechless when I need to say something. I will look desperately at things trying to recall their name until my husband will just work out, through a process of elimination, what I am talking about. If days are particularly bad I will avoid talking altogether and simply float without much interaction.

I have even forgotten the names of my darling furry companions and that is deeply sad to me.

Often times now I will forget what I am talking about half way through the sentence and this was bought painfully into view when I forgot that my pet had gotten outside and when I went to tell my husband of the event I promptly forgot what I was intending to tell him and made a coffee instead… it is incredibly heartbreaking at times.

For someone like myself who has always prided myself on my mind, my abilities to reason and to solve problems this part of my life and my disease progression is completely humiliating to me. I feel completely forsaken by the one part of my body I cherish the most; my brain.

I once described my experiences of thinking and remembering like being heavily sedated or stoned. It’s like being half asleep or having your head filled with smoke and wool. Reaching for words or information is like reaching into a thick mist only to pull out nothing in your hand. It is truly heart wrenching at the same time.

The more I try to concentrate the less it seems to help and I often have to admit defeat and wait until a memory returns in its own time, if it ever does. Even some of the most lovely memories and things I would dearly like to remember evade me and I now rely on my husband for this information. Things like when I first met my husband and remembering things we have done together have been buried somewhere in the recesses of my mind like lost treasures.

My husband is now my legal guardian and has all financial and medical guardianship for me as we don’t know how much more things may progress. Clearly some days are better than others but some days are truly desperate.

My room is covered in notes I have written for myself, my phone is filled with reminders and alarms, and I constantly find half written blogs which I have started and then forgotten about. I found twenty five at one time and resolved that I should try and finish them one day. I will certainly try.

Writing each blog will take several days even months and I am not a fan of marathon writing sprees as I will forget more than I mean to write. Even simple online chats will see me put down my phone or computer to get a drink and then I will promptly forget to resume the conversation!

To try to remedy some of these debilitating symptoms I make myself take supplements to help increase my mental abilities and alertness, I play word games to encourage spelling and word recognition, I do puzzles, I drink caffeine, I meditate, I use essential oil and I am very cautious with my use of pain medications and muscle relaxants so my brain fog is not compounded.

Decreased cognitive skills are symptoms that I find most painful and cruel as it cuts to the very core of who I am and how I have based my life. Cognitive skills are not small things and can be brutally underrated by the medical profession because it doesn’t affect them and they have no idea about how it can impact our lives.

I would have loved to do some sort of studies during the time since I have been retired but brain fog is a big factor (one of many) that affects my abilities to do so. To add insult to injury I have a real need for happy memories during my darkest times and yet I struggle to remember some of the most precious times that I want to recall, it is due to this fact that my darling husband and I have developed a beautiful interaction where I will request a happy thought or happy memory from him and he will retell it to me and we will share them again. Sometimes I will remember them with him and fill in some details myself but sometimes I can’t. This has become a treasured pastime for us both and I am deeply grateful for his memory and love when I need it most.

As a young person I once dreamed of writing a book as many people no doubt do and it saddens me deeply that I may never achieve this goal due to some inability of my memory or mind but like everything else with autoimmune diseases I can’t let myself give up and I must just be prepared to battle along and do whatever I can.

After all some of the most treasured things we have are our memories.

Gentle hugs,

Trish