Spread The Love

A year today (according to Facebook) we launched SUPER SPOONIE site on Facebook and the World Wide Web!!!!! πŸŽŠπŸŽ‰πŸΎπŸŽ‚πŸŽβœ¨ We still need your help spreading the news and reminding people that ALL profits go to research and support of chronic illnesses and autoimmune fighters.

http://superspoonie.mymerchstore.com.au/

This cause is very dear to my husband and I and we worked hard (with the beautiful Allie Thackray ) so that we can do our little bit to help all those in need.

Here is your chance to help to … β€οΈβ€οΈπŸ˜ƒπŸ˜ƒβ€οΈβ€οΈ

The Best Advice…

I asked myself today what would be the best advice I could offer someone with chronic illness or disabilities? Instantly my mind fumbled over a millions things while I blindly tried to pick through and sift some wisdom from it all.

So many thoughts and feelings came to mind.

Is it diet? Is it exercise? Is it attitude? Is it hobbies? … the list can be endless and ranges from good medical professionals to self care (and everything in between). But is there one or two special bits of advice that could be most useful? I kept turning it over in my mind.

After 12 years and countless roads I have been down it becomes clearer to me now that there are no definitive answers. Perhaps that’s the hardest answer of all!

We are all so different and if there were one answer or cure it would have been discovered by now, and by someone else I am sure.

When we are thrown into these difficult health situations and challenges we have to do whatever we have to and whatever we feel we need to try in order to find the best tools we can.

If you were looking for a lost item you would look everywhere, right? And that’s what it has been like for me. I have looked everywhere and I am glad I have, even though it has been exhausting, frustrating and at times downright heartbreaking. At least I can say I tried.

I am at the point where I can honestly say to anyone out there .. yep! I tried that! And I have.

Each of us must travel our own path to find the things that work to help us and also discover the things that do not help. It is our duty to ourselves.

Sometimes we meet a kindred spirit who finds similar comfort and assistance in the same things, but we have to be prepared to accept that this may not happen and we may have to continue the search alone, in our own way and in our own time.

Just as Edison tried 100s of times to invent the electric light bulb we must also be prepared to try and fail as many times as it takes to satisfy ourselves that we are doing all we can to have a life.

At this stage of my battle I am encouraging myself to not focus on the the things that didn’t work, the people who didn’t care and the answers I haven’t found. I am reminding myself that I have continued to look and search no matter how hard it has been.

That’s probably the only advice I feel able to give and feel the proudest to give.

Gentle hugs,

Trish

Positively Painful

We all know someone ( or many someone’s) who constantly require us to be positive, outgoing and happy all the time. We may even try to put on a false smile around them and go along with all their demands to be jolly and enthusiastic no matter what we could be going through, but should we have to?

Are we bad if we aren’t more like them?

What those people may not realize is that often they can ostracize many people and repel people who don’t feel able to mirror their feelings and beliefs. We are all different for a reason.

I could even suggest that such people are as difficult and demanding as those who are far more quiet, realistic and introverted as their needs tend to overshadow everyone else’s and they set the emotional tone in the room.

I will be the first person to say that I appreciate a kind word or a hopeful sentiment just as much as the next person, it is one of many coping skills in life, but I don’t feel the need to cling to such behaviors constantly. Sometimes I am quite happy to acknowledge that life is difficult, painful, stressful and unavoidably cruel. We are allowed to be realists and we can allow ourselves the time and space needed to be sad and uncomfortable. It is by going through such times that we learn how to come out the other side. Its healthy and important to learn. It’s even courageous to be able to show others this side of us! The real side of us.

I came to this realization late in life after trying to always be the positive and happy clown amongst my circle and family. Constantly lifting people was especially hard when I felt extremely flat inside myself. But I endeavored to hide this and not really address it. I went through burn out a lot! I was giving more than I got!

Anytime I did go through emotional times not only was I shunned by those people I revealed my feelings to, but i was treated as though I may be unstable or mentally broken if I dared to be real or open. I often wondered how many others felt this way? Because people rarely speak openly and honestly about such things we can often believe that we must be Inherently flawed or broken. Such an awful and untrue perspective!

Looking around we are inundated with happy faces, positive slogans and told that to be loved and successful we must always be happy and vibrant all of the time. At this time of life I just can’t believe that this is true and I am prepared to let go of those people who require this from me in preference to having a genuine and authentic life experience. I am prepared to push back and grow!

By constantly hiding, covering, masking, ignoring and repressing our feelings I believe we are causing ourselves more harm than good. We are choosing to be people pleasers instead of real people.

I believe that people who experience the full range of feelings are not only more stable and complete individuals but we are more able to cope with what life hands us.

We are still important and can be loved and loving.

Without experiencing the entire range of feelings surely we can not hope to be understanding and empathic of others. People who live within a small emotional scale don’t seem better or stronger to me, I don’t believe they have better lives than me.

I look at many of my family and friends who live within a limited emotional range and I now understand why I always felt disconnected with them and fake. There seemed to be this strange need to be strong and gutsy within my small town family background. The harder the better; seems so pointless to me now. It is no mystery to me now why we were never really close. I am convinced that this is where a lot of drinking, drugs and other destructive behaviors are started, all for the purpose of hiding and disguising the pain and difficulty in life.

Many people who need to always be called strong, hard, positive and inspirational make a rod for their own backs and I don’t want to be one of those people anymore. I want to be me. The genuine me.

I respect the choices and wishes of others who decide to live within the emotional range of their choosing, I wish them every happiness in their life, I just don’t see it as my failing if I am not like them and more like me.

On any given day I can feel many different emotions and they can pass through me without me feeling quilt or failure and I am happy that I have discovered this at a time in my life when I require it the most.

It makes it easier to accept being me and living my life and that must surely count for something!

Gentle hugs,

Trish

Finally! … awareness is coming

Another film based on how Autoimmune diseases changes lives and can be the scariest and loneliest diseases.

Doctors and people doubt you and dismiss you but the effects on those who suffer are devastating.

I am glad to see the world finally paying attention and getting educated!

The Myth Of The Martyr

Today as I was facing a particularly challenging and painful moment, once again I tried desperately to distract myself. Sometimes during these moments I also have my most profound realizations, I made some more today.

Today I realized that I can’t live with constant difficulty and pain without questioning the meaning of life or the purpose of existing like this… it’s never been an easy question to answer.

After being sick for long enough your life changes in every possible way. Trying to accept those changes and make the most of them is one of the hardest things to do. At least it has been for me.

As I sat in deep pain I could feel the futility and and frustration rising again like a painful tide. It can engulf me sometimes if I am not careful.

I try and fight these times by trying to focus on something, anything. A mosaic of ideas and images to deflect me in my time of need.

Today I began another of my deeper conversations with my husband and, as always, he listened.

I started explaining to him how I desperately and earnestly try to avoid two things in this current life, they are, being considered either a victim or a martyr.

Both of these labels trouble and bother me and I don’t ever want to consider myself as either of them, nor do I want others to impose these roles on me.

In my lifetime I have met far too many people who wore these labels and I saw how it consumed them. It became their burden and their prison and it changed the way people treated them and remembered them. It’s not a legacy anyone would want; Although at this stage of my life I care more about how I see myself now and not how other people will remember me…

As a younger person I didn’t realize how these labels can come in so many different ways, and they can be impossible to manage or escape, so I work very hard to keep myself at a safe distance from them.

When I think about the many injustices that life can hand, including debilitating illnesses, it can be too easy to see all the cruelty of life. It’s easy to realize how deeply unfair life can be, but I can’t let myself give up all emotional power and become the constant victim of life. And I won’t.

It can be a very fine line between being compassionate and caring with ourselves but we can also find ourselves feeling angry and bitter about how cruel life may have been to us. Sometimes there are no limits to how much pain and loss we must endure. Life offers no guarantees. Ever.

Yet I want more for my life than to reduce it to feeling a victim of its pain and suffering, so I don’t think of myself in this way at all. As angry and as frustrated as I can feel at times I still don’t feel like the world is targeting only me. I am not the most burdened person, I am always aware of that, but it doesn’t mean that I have to be uncaring to my own plight or challenges. In fact I also believe that we owe it to ourselves to be kind to ourselves and advocate for ourselves too.

Ultimately I aim to see myself as no more or less valuable than anyone else. This is another way in which I fight labels.

It is also why I will not entertain the accusation or suggestion that I cultivate labels either. My suffering and challenges are real but I don’t blame anyone nor do I use these challenges as a means of recognition or validation from others.

Although there might be days where I think these illnesses and struggles are unbearably cruel and more than I can cope with, I don’t think I am special because of this.

I also don’t look at myself as a fighter or a survivor. These are terms I read about in the media or how certain celebrities and heroes are described, but I don’t feel these terms apply to me personally.

Some days I cope better than other days and so most of all I consider myself as simply being human.

Equally, when I keep my struggles and pain to myself, or find myself having to make many sacrifices that many others may not have to make (and I don’t want to have to make) I don’t assume the role of martyr either.

Because I am chronically ill and disabled I also don’t feel I have to be an inspiration, constantly positive or obliged to do more than any other human being. Therefore I don’t have to dedicate my life to charitable acts or in the service of others simply to distract myself from my struggles, or in order to make myself feel better about being alive. I am not a martyr or saint either. I still have the ability to choose some things for myself. Whatever I do for others should be an act of choice, like anyone else. I always want whateverI do to come from the heart and with genuine intent.

I recall being told several times that I should dedicate myself to helping others in order to make good use of my remaining time and abilities. I took exception to it because no one should ever have the right to tell others how they should spend their lives. Becoming ill does not mean we have lost all rights and worth. It doesn’t mean we should need to endear ourselves or ingratiate ourselves so that we will be considered worthy or useful… Charity or kindness is not a punishment.

In fact the longer I have been more physically impaired the more I have become determined to build a stronger personality and be more free from scrutiny or labels.

The reason I Blog now is as I became less able and was thrust into an entirely new identity and state of being I was not happy with many of the actions, treatments, perceptions and judgements made about people with illnesses, and out of ignorance. Respect and dignity are things that the ill have to fight much harder for and It’s not right or fair.

I hope my voice will be added to opening up a new conversation and perspective about autoimmune illnesses and chronic realities.

As altered as our bodies and lives may become we are still, and always will be worthy and deserving of respect.

Always.

Gentle hugs,

Trish

Just You And Me…

This year has been a strange one for many different reasons. Probably too many to list in this piece, but an emerging theme keeps coming up time and time again… and that is that it is just my husband and I now, and it may be this way for a very long time.

My declining abilities has seen me give up a lot of online groups which I participated in. It has also meant that I am fearful of making plans to meet with friends and acquaintances as I invariably have had to cancel. Friends have gone and living their lives. People forget when you aren’t always in their lives or doing things with them or for them, that’s just the normal and natural way… so now it’s just us.

It’s surprising how small life can get and how quickly people fall away, but I have come to see this as another part of the challenges of chronic life. I refuse to see it as a personal indictment on me. I prefer not to hold on to feelings of loss, sadness, disappointment or abandonment. It doesn’t help me and it doesn’t change what is happening in my life. When seen like this it doesn’t hurt or surprise me anymore.

If my current life is too boring and limited for others than I can look at this very objectively and calmly now. I am more able to resign myself to the realities of life without fear or blame.

I imagine that I could try to remedy some of this by doing online videos and expelling energy that I just don’t have In order to garner some interest and interaction, but I currently believe that true friendships and companions shouldn’t require more than we have to give. So for now I won’t be attempting such things. I use my energy to retain whatever small amount of independence and enjoyment I can.

The message has been clear for some time now that it will be just us for most of my remaining life now and so I am looking for ways to make sure that we approach this period in the healthiest ways possible.

By healthy I mean having healthy expectations and behaviors. It will be necessary for us to strive to be companions and yet still individuals.

Having our own pursuits, interests, me time, privacy and boundaries are important for us both. Often these lines can blur quickly when you share so much of your lives together.

Wearing different hats and being being able to change them regularly i.e. nurse to husband, friend to carer etc is extremely hard sometimes.

Sometimes I need his help to do the smallest of things and sometimes he needs my help. The scales move back and forth. We must allow for this whilst still having healthy boundaries.

The first thing I have had to acknowledge are my limitations. What I can’t do or what I can’t provide. And the same is true for him. For example I can’t give him a males perspective on issues or problems. I can’t be a peer as I am not in his same circumstances.

He can not, and will never, know what it’s truly like for me.

That is probably the strangest part of all. Especially in times when he appears to be having the most relaxed and peaceful experiences and I am riddled with pain and self doubt. To be so close to someone and yet not truly understand has been a difficult hurdle but an important one we still keep facing. The key is communication and honesty.

It’s just him and me…

years ago I couldn’t even imagine a scenario where this would be my reality. I was busy. I was working hard. I was independent. I was a helping and giving person. I was an active and confident woman. It’s remarkable how some things change us so profoundly.

My only hope for us, and anyone else who may be in this position, is that we face this and overcome our challenges in the best and most respectful way possible. If we need counseling than we must seek it. If we need time out than we must take it. If we need compromises than we must be prepared to find them… together.

Gentle hugs,

Trish.

M.I.A

I have noticed a growing number of chronically ill / Autoimmune sufferers and I share something in common as the years stretch on, and we have been battling for many years. The similarity is this … we slowly just stop going to doctors and specialists.

Now I am not going to tell people to follow in my footsteps or even to suggest that this is what you should do. This is not medical advise. I am simply being honest about what is happening to me and that’s what my readers have come to expect.

In my time I have gone to all the various specialists, taken most of the available treatments, done all the scans and tests and I am still not cured and still growing progressively worse. So I have decided to manage myself. I believe I would be no worse off.

I felt a growing frustration and futility when it came to the medical profession and my health so it seemed like I was no worse off by simply trying to manage on my own, so I have been.

I still take my meds and do all I can for myself (diet, exercise, mental health) and try as hard as I can to ignore what is happening to me physically.

I find it easier to do this if I am on my own and not around doctors and others. When I am around these people the differences between my abilities and pain levels is glaringly obvious. On my own, however, I am simply normal within my own frame of reference.

This year I started house renovations to distract myself from my day to day routine and struggle and to make my home more accessible. It has been wonderfully creative and very challenging but it has also been incredibly taxing. Next year I will attempt to find a new distraction. And so on and so forth for as long as I can.

I no longer see any real benefit from going to regular specialist appointments and taking the same tests over and over to see how much progression I have, or haven’t, made. The fact is that with each passing year something has worsened and most likely will continue to do so.

The drugs I take will have to see me through the worst pains and the worst times and I hope that they can. They will have to.

I have come to expect regular flares and they have taken longer and longer to recover from. And they still do.

I don’t expect miracles anymore and don’t try every new fad that drifts across the internet.

I have modified my home and have bought various aids and supports as are available for my needs. And I do my best. So does my husband and carer.

I have committed time and effort to try to spread awareness and respect for my fellow fighters and sufferers, and I hope my small contribution will count somehow, perhaps I will never know, but I can say I tried.

I rarely go to online support groups anymore as it is often more beneficial for those who are newly diagnosed and those with many questions that the medical profession just can’t answer or don’t know. I also find it incredibly difficult to stay up to date with so many different groups for each diagnosis and medical problem I have. It can be exhausting on its own. So I don’t push myself and harm myself more.

To many doctors and many online support groups I am what they might call missing in action. And I am completely ok with it.

If I found myself in desperate need of medical attention and close to death then I would take myself to the nearest A&E, but until then I would rather let fate play out as it always will.

I decided I could either spend my time going for my MRIs and regular blood checks or I could spend my time living (as much as I can) and so I chose living.

For many progressive diseases there are currently no medications, so I consider myself no worse off.

At home, in privacy, I can struggle as much as needed. I can fall, rest, shake, ache and cry without fear or hesitation, and I can pick myself up when I am able. No doctor or medication can teach this, so I do it alone.

Friends and loved ones quickly tire of hearing the same stories of struggles, so I don’t even bother telling them anymore. I have one or two trusted friends that I will occasionally share some details with, but for everyone else I stick to listening to their lives and problems.

In a life of difficulty and daily struggle, I have chosen to look for and find pleasure and peace whenever and wherever I can and I will continue to do so. No scan, no test, no doctor and no drug can ever provide that. So for that reason I have become missing in action.

And I don’t regret a moment.

Gentle hugs,

Trish.