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

Leaving Normal

Probably one of the most fundamental shifts I experienced as chronic illness took over was the departure from normalcy. It is a hard thing to come to terms with and probably harder than most people will ever realize. Sadly it happens for many autoimmune sufferers the world over.

Despite thinking otherwise, the majority of people live within a realm of normal that they share with most other human beings. For example most people will eat at regular times, sleep at regular times, work at regular times, holiday in the same seasons and wear mostly mainstream clothing… And so on. Normal is a place where most people like to live and it helps regulate their lives. Normal is where people feel safe and appreciated.

This, however, is rarely achievable once you become chronically ill and most people don’t truly appreciate this. People will often assume that chronically ill people live out there days in similar ways as everyone else however they get to stay home more and rest more. It seems as though it is a simple and easy life from the outside looking in… but it’s not. Not even close.

Let me reminisce a little. Years ago my job required me to work night shifts. Many night shifts in fact. At first I enjoyed the change and the extra money but as time went on the novelty soon wore off. Even something like changing your working hours can put you out of sync with the rest of the world and it quickly became a hard life. I struggled to see people. I struggled to have a social life. I struggled to do normal things like household chores because I was working when almost everyone I knew would be sleeping and I was sleeping when things needed to be done during normal hours.

Ask anyone who has worked night shifts or did jobs which require you to do something outside the regular nine to five and you will quickly see that it becomes hard to fit it with the rest of the world.

Now that I have given you a little context, I can begin to explain that there is nothing normal anymore when you become chronically ill and disabled and it’s a constant battle to behave like and fit in with the rest of the world.

As I write this it is 3 am. I have been awake in pain for most of the night and this has become a normal night for me for many years now. My husband has been up with me although I try to let him sleep a little more than me because he is exhausted, I am exhausted too but sleep is no longer normal for me. His means that we generally start our days at 10 a.m. having had maybe four hours of sleep. We are perpetually tired and I am constantly struggling with tiredness and weakness. That is our new normal. We try to nap during the day but that offers many difficulties and doesn’t work well with the rest of the world.

My days will be decided by pain, incapacity, weakness and various other symptoms which means that doing things that regular people do at the times they do it is almost impossible. The past few months I haven’t been able to eat much solid food and that is not normal compared to 99% of everyone else I know and how I was many years ago. I dearly wish I could be normal in these things too but normal has become a mirage that I can no longer afford to chase.

I haven’t been to a shopping mall or a restaurant in several years now because on days that I feel slightly better I don’t want to spend them shopping or waste the chance to sit in my garden, go for a drive, play with my pets and do something for my husband. These small things are what I now live for and most people would call that boring and not normal. It has been nearly a decade since we went on a holiday and compared to my friends and loved ones that is not normal. I have the same desire to travel and be entertained like normal people but this has become beyond my reach so I have endeavored to find relief and entertainment in other places.

I miss normal and doing normal things a great deal and that is why it becomes particularly painful when someone makes me feel like I am unreliable, not trying or unworthy because I can’t do the normal things others can.

Chronically ill sufferers will go through almost anything to be normal again. We take meds, we push ourselves, we hurt ourselves and we suffer emotionally and physically in order to try to be normal again until the time as we decide that normal is something that we can’t be constantly battling for or compared to.

It’s a hard point to reach.

Struggling to meet peoples expectations and ideas of normal was a yardstick that I was constantly beating myself up with but I had to face a point where I no longer want to suffer to be normal and I need to put much more effort into being happy. Peace and happiness becomes far more important to me now and exists outside of people’s definitions of normal.

Leaving normal was a painfully difficult experience but it has also made me a stronger and more courageous person than I was when I was able to be like everyone else and do all the things that everyone else does. I feel guilty that it has meant that my husband has had to leave normal with me but I can’t tell you how much it has meant knowing that he chose to leave normal for love and says he would do it again without question.

Compared to other couples out there that have never been truly tested to this extent or compared to couples which have broken up over less difficult situations I guess this sort of love isn’t normal but I am so grateful for it and proud of it.

Finding a love that is this strong is rare and it’s worth being not normal.

Gentle hugs,

Trish.

A lesson from history

I love documentaries and one of the few perks we have as chronically ill people is that we are often bedridden and able to watch documentaries for hours on end. I have watched many hundreds of hours of history and science programs over the last decade that I have absolutely adored.

During a recent documentary binge I learned more about the everyday lives of the peasants during the Middle Ages.

The fact is that we are still learning a lot about the period by digging up artifacts and piecing together the remains of what life must have been like for the average peasant during this time.

A great deal of history is devoted to the Kings, queens and wealthier persons of the period and there are a lot of information and documentation dedicated to glorifying them as they had access to many opportunities that everyday people did not, including reading, writing and education.

It is owing to a great deal of these factors that many people died young, lived in abject poverty and suffered tremendously during their short life times. Still today little is actually known about joe average aside from his life of servitude and their struggle to survive. Did he or she make future goals or have lofty ideals will remain unknown to us today. One question that remains highest in my mind though is why go on?

Where did the will to go on come from when faced with such difficult and depressing odds?

I ponder this question a lot and it seems to me that there would have been a lot of suffering and very little certainty in the average life of a peasant. I imagine a life dominated by pain, illness, death, poverty, fear, oppression and hopelessness. So what did they do? How did they cope?

Ultimately I can’t know what they truly felt but I can only imagine, based on the history that is uncovered. The fact is that although they were never recognized, mentioned or honoured it was because of these people that their countries flourished, survived and even prospered. Their children fought in wars. Their hard work shaped nations. Their creativity and dedication produced artworks, skills and industries that helped shaped the modern world.

It seems to me that part of their reason for being (raison d’etre) is that they drew meaning from being of service to their families or for their cause. This is where I found myself pondering and giving much thought to my current circumstances.

As I have found myself increasingly more physically challenged and suffering I have struggled with feelings of no longer having meaning or being of use to those I love and care for. Finding a use for my time and my abilities (or lack there of) has been put in sharper focus today than any other time of my life. It is the hardest of all the pains at times.

Initially not being able to do the things that I wanted to do or hoped for in my life was the cause of the most pain and frustration but as time went on I became more intent on being able to do anything or achieve any thing for those I care for.

The fact that society makes us feel unwanted, unneeded and irrelevant is almost suffocating to those who are fighting hard just to survive and exist. Friends and loved ones often reinforce these feelings by no longer seeing many uses for us or reasons to love and appreciate us.

… So what happens now?

Sadly many people in these circumstances can become depressed and isolated and may even feel suicidal if these feelings grow deeper and darker, After all, what and who makes us feel necessary or wanted anymore? What does living actually mean anymore? …Especially if we have no use in this world anymore.

The phone stops ringing, people stop asking for our thoughts and opinions and worse still is that our minds and skills are now no longer valued since they are now inside a body that is disabled or unreliable.

I realized that the days I have appreciated the most are days when I think I have accomplished something. Even if that is something small compared to what others can do everyday. A day where I managed to shower, cook, iron, draw, write, talk to a friend or help my loved one through a painful time are days in which I felt a sense of accomplishment and a reason for going on. I particularly enjoy times where my mind has been put to good use in creating a project, learning new information and planning our future security from the ideas and inspiration I have provided.

It also seems to me that far from living lives in the pursuit of our own personal pleasures, achievements, accolades and gratification our reason for existing is more closely linked to our true purpose and perhaps our ability to serve and help those we love.

Many people today who no longer have to fight just to survive, or battle the type of conditions and odds that medieval peasants once faced, spend the bulk of their time in personal pursuits and self absorption. This was not possible for those living centuries ago so they might have found real motivation and strength from being able to nurture and support their children and family. They seem to have worked tirelessly for those they loved and would even die very young so that others might have a better life or continue to survive.

I have found this very meaningful in my current battles and this is primarily why I began blogging years ago. I wanted to help make life a little better for all those autoimmune warriors out there who are struggling to find their dignity and a place in this world. I will often remind myself that as long as I can be of help or service to my husband and those I love, even if it is only in some small capacity, I would endeavor to be here for as long as I am needed and as long as I can.

This may mean that while I no longer want to inject myself, struggle with limbs and pains, or battle on with frustration and uncertainty, if my husband may require me to help him to battle his own private demons, or need my reassure him on a day where he feels lost and confused, then that will be my place and my privilege.

Many people seem to have lost this message in the modern world.

This isn’t always as easy as it seems and certainly far harder than it is for me to write these words. My pain and feelings of futility will often get the best of me and it is easy to think that there are times when everyone would be better off without me, including me!

Like those people centuries ago, I may never be immortalized, remembered, recognized, appreciated or even achieve anything approaching what most people will be able to do everyday, however maybe we have forgotten a greater lesson that had sustained many of our ancestors centuries ago through the bleakest and cruelest of times and that is to find purpose and to be of service in some way can be a very strong reason for living.

This altruistic view of life may have become long forgotten but it also may be the truest reason why humans have survived and evolved over the centuries and I prefer to think the peasants that did what they did everyday without recognition play a far greater role in the course of human history than the kings and queens of the day.

Gentle hugs,

Trish