Super Spoonie Entry 👚

I am SO moved by those of you who have written in and shared your stories in the t shirt giveaway!

I am amazed by our community out there and the wonderful way in which you have overcome obstacles and challenges.

The messages I have been receiving are just so awesome ❤️

A recent entrant for the giveaway also agreed to share their story (name withheld for privacy) and I am so honoured when you agree to share your experiences and support/encourage your fellow chronic fighters!

If you too would like the chance to have your own super t shirt. Please send in a message with your own experience of when you went through a challenging time and how you made it through! I may have to give some extra t shirts! 😘

❤️❤️❤️

#respect

Recent entry below.

(Shared with permission)

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This is my entry for the spoonie t-shirt competition. 🙂

I have fibromyalgia/CFS & severe depression. Just over 2 years ago I lost my job due to sudden onset of FM & was trying to juggle two girls & my abusive ex-husband. I got to the point I was in bed more than out of it. Then I got evicted because my little girl who was 9 became violent & damaged the house we were renting from my boss.

She lived downstairs from us. So job gone, house gone, up at the hospital with my daughter every weekend – and we were almost homeless. 2 days before we had to be out I found a rental for us. I couldn’t afford it mind you but it kept us off the streets. 2 years on we are in social housing & i’m still really sick. The girls are doing better – my 15 year old has a job at KFC, a traineeship & wants to be a vet nurse. My youngest at 12 is a beautiful “nerd” & wants to go to Uni. I’m still trying hard to recover – every day is a battle. But I know I’ll never give up. 🙂

Good luck to all the entrants & thanks for encouraging us spoonies to open up & share our stories. Xx

Thank you for calling me brave : that’s very kind of you & means a lot🙂:)

Different Stories.

There are so many different support groups and so many different sufferers and it always surprises me how different we all are.

Everyone who shares their story and struggles will either find someone who can relate to their situation or they will find someone who may be worse off, there is never any way to tell.

I can understand why able bodied people can become confused when they know person X who has an illness and yet they are working and holidaying and no one would even suspect they had that illness… and then there is person Y. Person Y is bedridden and rarely goes anywhere. They struggle to do the basic things … but they have the exact same disease!

How can this be true?!

Surely someone is lying and just trying to get attention?! … sadly that’s what most people think but they possibly don’t not say it. At least we hope they don’t say such ignorant things anyway, but often times a lot of people do say such things and this is one of the number one problem that the chronically ill face; Shaming and bullying.

However. Aside from the general public not knowing the truth and engaging in such hurtful speculation, it is also true that many sufferers don’t understand and struggle to accept why their illness has been more disabling than someone else’s.

It can be really hard to accept.

You see we all want to be as high functioning as we can. We all want to have the best mobility we can have and the best quality of life that these illness can allow. But we are all so different!

Rarely are two sufferers in the exact same place on the scale at any given time. Ever.

I spent a lot of time wanting so much to be in the higher end of the functioning scale. I struggled to understand why some others were able to do more and were in less pain. I felt a failure and I felt so alone.

What was I doing wrong?

I tried everything… And I do mean EVERYTHING!

I still see many of my fellow sufferers able to do so many more things than me and live with much more quality of life and I truly wish that was my story too. But it isn’t.

And then one day I met someone who had very similar symptoms to me and was struggling as much as me and it felt strangely… wonderful!

Like finding a long lost friend!

I wish we were not in a similar situation but I was also glad to have someone who finally understood some of how I felt. A real soul mate.

Why does this happen? Why are some people seemingly more affected than others? Why are some able to achieve remission? Why can some people walk and drive and work while others can barely move? No one knows. Not even doctors!

Some say it may be due to when they were diagnosed, or how quickly they got medications, or how old they were, their genes, their backgrounds … I believe it could be all of the above or none. Maybe it’s just dumb luck!

We all have a different story and we all have very different paths with these illnesses. There is no way of predicting which one you will be or where you will end up. So many different possibilities.

Whilst I wish I was so much more able and higher functioning I can not do anything but somehow try to work with what life has handed me.

I didn’t want one of these diseases and yet I have been diagnosed with several! It seems so unfair sometimes… And it is.

But that is how life goes.

Sometimes accepting that we all have different stories is as hard as accepting the illness in the first place.

All I know is that I don’t want to add the pain of comparing myself with other sufferers to my already difficult circumstances. I work very hard at being happy for those that are at a better end of the scale than me, and focusing on how I can still enjoy the life I have.

Gentle hugs,

Trish.

What To Do?

I wish I knew the answers to some of these ever elusive questions. Truly.

What should I do now, or try, or read, or eat, or take? …

to date I have tried a dozen different diet changes from paleo to gluten free and everything in between.

To date I have attempted every exercise program from Pilates to hydro therapy. I even had my own home gym. But… here I am! Nothing stopped what was happening no matter how hard I pushed myself.

To date I have tried no less than 100 different supplements, from CoQ10 to Chinese herbs, and supplements based on a hair sample. Some I still take, some made me much worse. I no longer jump into meds and supplements without a great deal of caution and contemplation!

I have also tried three different biologic therapies and countless steroid injections and IV’s.

…As well as taking a dozen different medications and injections. Daily.

Why?

Simple. To get back some of the abilities I once had. To be some of what I was. To be more than just a body on a bed. To stop the endless pain that haunts every day and night. And to be in this world. To have a better quality of life. No matter how small an improvement it may be.

The world doesn’t have much patience and acceptance for people like me… But we still keep trying. They don’t often see how truly hard we try.

I know sufferers who have been diagnosed for 25 years or more (and no doubt suffered symptoms for a lot longer) who still wait for breakthroughs and volunteer themselves for experimental trials. With hope of improvements.

While it seems the world forms opinions about sufferers like me ranging from acceptance, compassion to complete disinterest and doubt, we still have no choice but to contemplate questions about what do we do now?

Where do we go from here and how do we learn better ways to deal with the challenges of everyday? Every. Single. Day.

It is some of the constant questions I ask myself. Over and over.

I keep asking myself to look for answers and better ways so that I can be more for those I love. How do I spare the ones I love from having to share this difficult road?

I know that people will choose their own actions too, regardless of what I try to do and attempt. In those cases I can only choose how to respond to the things I can’t change.

What to do?

The question isn’t an easy one when you don’t have as many abilities, capabilities and opportunities that so many other people have.

In the end someone will always judge us for what we did, what we didn’t do or what we tried to do… but how we judge ourselves is really the most important thing of all. I am learning this more and more each day. I am trying to make peace with this everyday.

In the end the only thing I can do is to do my best. Everyday. And in the end that will have to be enough.

Gentle hugs,

Trish

The Limits

Everyone in the world is living with limits to what they know, what they have and what they can do. Sometimes we test those limits and we are constantly encouraged by society, and media, to push those limits in the pursuit of greatness. I used to believe that I could and that I should push those limits. Until my life changed.

The hardest parts of living today is accepting limits to my abilities and although there are many people who still say we must push ourselves constantly, I have learned that this is one of the worst things I can do to myself and my body.

Many people will disagree and they have the right to, but they also don’t live my life or have to cope with the results of what happens when I do push my limits… but I have to. Everyday.

It is not for lack of trying that I have reached this point. My goodness! If I had a dollar for every time I pushed myself and pushed hard!

You see, for people with chronic illnesses and bodies which are altered by illness and diseases the reality is that the more it is pushed, the more it pushes back!!!

A decade later and I still keep repeating this mistake!

Yesterday I was so tired and frustrated of being inside my bedroom I struggled to my walker, pushed myself to do some cooking (making a salad) and a little gardening (cutting some roses) and today is sheer agony. Last night I couldn’t sleep for the pain. Today I feel as though I have been hit by a car.

My world has been severely limited to where I go and what I can do… and I hate it.

Accepting limits does not come easy to me and perhaps that is the human condition? …We always want more. Pushing has made it possible to achieve many amazing things in my life but as I lay here in sheer agony and my joints screaming, I ask myself is it really worth pushing my limits now?

It has become my endless riddle.

I want to spend time with friends. I want to interact. I want to do things and experience things. I want more than this!

Only people who have knowledge of what I am talking about will truly appreciate the multitude of emotions behind what I am writing. Many won’t understand. But that isn’t my battle. My battle is learning limits and how to accept them.

These days my limits confine me to interacting with my husband and my environment in the best and only ways I can. It’s not easy to accept this and it has certainly declined over the past few years. And that is another problem in itself. My limits are always changing.

Even when I think I know where the cut off is, it is also constantly changing. So very frustrating.

Today my limit may be just to shower, read, interact on social media and maybe enjoy a a small meal with my husband. I can’t afford to compare this to what I was once able to do or it will break my heart. Over and over again.

Why is it so hard to accept limits as an ill person? I may never truly understand. But for now I have to be prepared to listen to my body, even when I don’t want to, even when I hate listening…and hope it doesn’t worsen.

Gentle hugs,

Trish.

The M B’s …

Never in my life have I had to encounter so many assumptions, made by so many people, who have absolutely NO ideas of what I do and what I go through, until now.

I call these assumptions the ‘mustn’t be’ diagnosis, or MB’s for short.

For example, I wish I had a dollar for every time someone said the following;

You mustn’t be eating the right food

You mustn’t be drinking enough

You mustn’t be exercising enough

You mustn’t be taking your meds

You mustn’t be positive enough

You mustn’t be stable emotionally

You mustn’t be trying hard enough

You mustn’t be really that sick

You mustn’t be in that much pain

It is truly sad that people’s first reaction is doubt and suspicion. Yet there are over 150 million Autoimmune sufferers world wide.

The MB’s out there make living with chronic illness a harder challenge, and it takes time and a lot of their noise, to build up a resistance to their effects. But it can be done.

By remembering and honoring myself and my struggles to date, I am reminded that the MB’s are just a product of ignorance and a lack of compassion. But it’s not my (or your) failing.

Every time I overcome their words or their predictable comments, I know that I mustn’t be doing too badly!

Gentle hugs

Trish

Life Reminders …

There isn’t a day that goes by that something happens to remind me that so much in life we are just so completely and utterly unprepared for and yet we just struggle through, learning as we go. Nobody could possibly tell us or train us for the all the things we will face as life unfolds. It will always be a complete mystery.

Looking back I wish we had more skills for coping when we first start out in life, but sadly life shows us that we must learn these skills by coping with what has happened and not before it happens.

All the planning and expectations in the world will never ensure the result we wanted or the milestones we hoped for. They are simply hopes but not guarantees.

Life also reminds me not to think that I can predict people, no matter how well I think I might know them, people are not transparent and are constantly changing. Including us.

Life also reminds me that we truly need to be kinder on ourselves and others; but especially ourselves. Some of us have learned to be extremely self critical but it really can be the worst waste of our time and life, especially if we are self harming.

As I watch how people interact these days I see how quickly they can jump in to criticize and condemn others. We excel at passing judgements and looking down on others in order to feel better about ourselves. Even though we know this is some of the worst behaviors and only weakens us as a society.

We could more easily train ourselves to be less judgmental and empathic, after all no one is perfect. It’s just a case of learning how to stop, think, and acknowledge that “.. that’s [their] opinion or experience and [they] are entitled to it…” and then simply choose to move on, with respect. Although I believe this is a skill, it also gets easier the more we use it.

Life reminds me that the people who have good hearts and who show kindness are the greatest treasure in life. They are not as common as we like to think, or that we hope for, and therefore they should be appreciated and commended in any way that we can. We need people like this.

We don’t want these type of people to die out or give up. They are truly what makes the world possible to bear. When I am struggling I don’t think about the celebrity I read about or the sportsman that I watched one day, I think about the kindness and caring I have encountered along the way. i.e. That lady that gave me change to use a pay phone without a second thought. That paramedic that held my hand when I was in pain and scared (even though he didn’t know me or may ever see me again). They were more important than whoever is on the front page of some magazine or clutching a gold award somewhere.

Life has shown me that it’s always the little things that makes life worth living. It’s cliched. I know. It’s the little things that I do today that will all make up a life at the end. My life and your life are made up of these little things and if we didn’t have those little things we would miss them deeply. Sometimes we don’t even know what little things are truly worth until they are gone i.e. A friendship that has gone or a loved one lost.

Life has also reminded me that when everything else falls apart and fails there is nothing that will keep us going like hope.

Hope is sometimes the only thing that keeps us wanting to stay alive. When hope is gone life is simply a burden we carry like a weight around our bodies. Learning how to hold on to hope and to give hope is the most precious gift in this world. I know it is something I still struggle with in the darkest of times. Dark times are where hope is born and where it can finally die. Those who face more dark times and struggles will ultimate face a constant battle with hope. The battle to keep hope alive.

I know that I must continue to do what I can to master the difficult nature of hope but I am grateful for the times that someone has given me theirs when I needed it the most.

Gentle hugs,

Trish