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

Love Hurts

This piece is a collection of the thoughts and experiences shared by many, many fellow sufferers and it deserves attention and respect.

This piece is more for the able bodied out there but I hope it also resonates with fellow Autoimmunes.

It isn’t easy being a single person these days, finding a partner can be extremely difficult. Finding a partner when you are sick or disabled can feel down right impossible!

I see and hear from so many of my fellow sufferers that are completely devastated when it comes to finding love, especially when you have a disease sharing your body and calling the shots. Many are resigned to the fact that they are doomed to be alone forever.

Why? Because who would want someone who has a health condition????

Sadly, it seems that the answer is not many. It is so heartbreaking that I am lost for words.

It seems that more than ever people have a grocery list of requirements when it comes to finding a partner. Successful, tick. Good looking, tick. Money, tick. Career, tick… and on it goes.

For those that might be able to hide their illness it might mean you have a better shot of catching someone’s interest, but for those that can’t hide it’s effects on your life and body… disaster!

I am married. I knew my partner before illness overtook my life, but, I was the main bread winner and so some things where in my favour perhaps. Back then I was able to tick some of those boxes… but now? It’s a completely different story!

What would I be worth on today’s market? I don’t imagine it would be that much. Sadly.

But why?

The answer is that honestly I would be seen as too much work for someone and not enough goods on offer. Probably more like I am damaged goods!

I am constantly told how lucky I am to have my husband as though I am undeserving and as if he must have taken pity on me. I fight back the impulse to swear. I actually feel like he is lucky too! … Thanks for asking! Lucky because I love him and I am honest and respectful to him. That’s what real relationships are about. Nobody said he was lucky when I was more able bodied and the main money maker, and nor should they because it was a matter of love and respect… like all relationships should be.

All such remarks do is make the sick person feel unworthy and guilty of something. I know on an intellectual level this is utter nonsense… but in reality it’s a different story.

I remember a time when I was a lot healthier and able bodied but I still experienced difficulty finding a lasting relationship and a good team match, even then! … Imagine now?!

This world looks down upon the ill and disabled. It won’t consider the prospect of dating someone who may require extra support or assistance. It is just not something any person even wants to consider these days.

Unless… maybe… you had married someone prior to becoming ill, and they happen to still love you: enough to tough it out at least.

You see the thing is this… the truth is most people who have an illness have a huge capacity to love. They have learned to value life and people to completely deeper levels than most of superficial everyday people. And. Aren’t relationships supposed to be based on love??!!

They are some of the most talented, most inspiring, most sincere, most gifted, most supportive, most thoughtful and interesting people that you can hope to find and have had difficult illnesses handed to them… they didn’t choose them!

Most people who have illnesses have a deeper sense of appreciation, kindness and empathy. Aren’t these prized qualities? Even today??

The way I feel about this topic is that it isn’t a persons physical disability that is the problem, but rather it is everyone else’s shallowness, superficiality and prejudice that prevents many people from finding loving and lasting relationships.

And that can be changed. It’s simply a choice.

Shouldn’t we take the time to really know someone or look deeper into their personalities and inner qualities before deciding who we are suited to? Rather than looking only at the physical or exterior? I hope that a mature person will realize this for themselves. An emotionally mature person should.

After all, we ALL age. We all grow more frail. We all become less able in time. And… what if it were YOU who were sick. How would you want to be considered?

Trish.

The greatest Myth of all…

One of the biggest misconceptions that many people, strangers and a great number of health care professionals make about me is that they assume that the longer I have been sick the easier it must be to not want to do anything. Wrong! … and that I must just struggle to want to do things. Wrongagain!

I can honestly say that these assumptions are complete and utter rubbish!!!!

I hope that this piece will debunk that myth once and for all.

One of the most heartbreaking part of these diseases for me is that there is still so much I want to do inside me. However, It is trapped inside a body that struggles just to even exist.

My will to do things is not waning. My body is.

As I watch so many people going about their lives and doing what they consider to be boring or repetitivetasks, I long to be able to do such things. I even Fantasize about them.

So many people bang on about how the chronically ill appear to lose their drive, motivation and desire to do things and although I can’t speak for others, I find this to be utter nonsense in my case. I have had to learn to ignore, turn away and allocate these people to the ‘haven’t got a clue’ basket. Because they don’t have one single clue … and may never have.

If they could spend a day in our home they would have their little bubble of ignorance burst.

If you have been ill for long enough the chances are that you will also start being sent to psychologists or psychiatrists who will encourage you to start making dream journals and writing down ‘things I achieved today’. I imagine it is for the purpose to encourage you and motivate you to live more life and be grateful for what you have. They seem determined to convince you that you are becoming unmotivated, ungrateful and lazy, however I can’t help but find it all condescending, annoying and ignorant of the truth.

I don’t lack inspiration and imagination, I lack functionality.

If someone really thinks I am going to start a journal and write down my goal for the day as i.e. eating my food on my own without pain and nausea, then I think they clearly have the wrong woman as a patient. I simply can’t write such things down and won’t. I find it more than a little embarrassing and even childish.

That doesn’t mean I am not a grateful person or emotionally mature! Far from it. My illness has given me insights and gratitude that I never had as an able bodied person and that I rarely see in the general population… And that is the point!

One of the hardest parts of these diseases for me has been managing a very personal battle between the inner person who wants to do so much and the outer body that can do so little. It is pure hell.

The only ways I can manage to do even a portion of the things my mind imagines and dreams of is with the help and physical assistance of my husband.

If I want to plan a garden it is up to him to do all the labor and everything I can’t do from my bed or chair.

This places a great burden on him because he must be his own person and my body too!

If I want to plan a trip, it falls to him to arrange everything, aid me, organize day to day things, care for me when I am in agony, and then bring us home safely.

He is the body that I don’t have and it breaks my heart to have to rely on someone else for this amount of help. I hate it.

Am I grateful for his help? Absolutely and completely. But I am also deeply saddened and desperately disappointed that this is what life has come to.

There are no memes or positive affirmations that eases or takes this heartache away from me, and I think it never will. Despite the times I do anything and everything I can to try and claw back some abilities of my own, the reality is I only seem to make my situation worse and my suffering multiplied.

A significant number of Autoimmune’s share a background of type A personality and therefore are some of the high achievers and intellectuals in their former lives (AARDA), therefore we seem particularly vulnerable to struggle with these diseases that rob us of our abilities to do things and reach our goals: which is a big part of our nature and personality.

Beyond the bone breaking pain and the all the physical hardships I encounter, I find the emotional pain some of the worst aspects to deal with.

Perhaps others relate to this too?

Gentle hugs,

Trish.

Tears And Crying…

Crying may be one of the most natural things in the world but it still has such stigma attached. Even today in 2018.

Sadly it is also a huge part of life for many chronically ill, including me. It serves many purposes in my day to day life, one of which is the relief of built up pain and frustration. Without it I fear I would not cope at all.

However, even though it has become a very big part of my life now, it is still seen as weakness by others, drama by many, and makes a lot of people uncomfortable and unwilling to be in my company. Some people tend to react by showing empathy and allowing me to let out these feelings, however some people will tend to judge me and retreat. I can never tell anymore who will react in negative ways, so I don’t risk it. I don’t go out amongst people if there is the slightest chance I may be suffering or may be moved to tears. I won’t even talk on the phone!

Growing up in the 70s I came from a family that considered crying to be an act of weakness. It was not allowed in our family and I was always told to “go away if I was going to cry” or “stop crying or I will give you something to cry about”. I learned early on that it was not acceptable and even shameful. However there were a select few that were allowed to cry… my parents and whomever they deemed worthy.

It took me many years to learn that this was wrong and I now don’t endorse such judgements and behaviors. I have no time for such people in my life now. I am more emotionally mature and respectful now and I also expect those closest to me to be as mature also, or we just can’t be in each other’s company.

Crying has become a daily requirement in my life over the past several years as pain and frustration gets on top of me. The past twelve months have been particularly painful as I have endured many struggles and now a damaged hip which gives me no relief at all. When the other parts of my body flare or start rebelling at the same time the results can be overwhelming. So I cry.

Because many of my friends and acquaintances do not feel at all comfortable being around tears I have forced myself to further retreat from people for fear of losing more people through no fault of my own. I just can’t predict when the pain or torment will get too much these days and lead to tears.

Sometimes even holding on and holding back emotions can mean such a build up that the slightest thing can push me over. So I stay hidden and don’t even want to show my emotions to doctors. It is far healthier for me to find release when needed than to suffer further. So I tend to do so in the privacy of my home.

It is a sad reality that most doctors still see tears and crying and instantly think it a sign of depression and mental illness rather than recognize the pain and challenges at the core of it all. It seems far easier for them to make these determinations instead of working at the more difficult issues. Chronic sufferers can be labeled as complicated and too hard to treat because of the enormous amount of challenges and difficulties they are forced to cope with and the current medical profession is extraordinarily unable to cope with long term or chronic conditions. Very few people, including doctors and health care workers can comprehend long lasting illness and progressive diseases… so they don’t.

Generally speaking, not unless you are going through it yourself will you have any idea what it feels like. This is just a universal truth. So I have had to try and work with this reality but at the same time I truly believe that it needs changing. Educating. Knowledge. Understanding. Developing.

In my opinion crying is not the worst thing a person can do, nor is it a sign of their weakness. Judging, indifference and coldness is.

So while I hide away so that I don’t burden people with the reality that I confront, and my husband confronts, I hope these blogs will help others rethink some of the social attitudes and beliefs towards sufferers and crying and perhaps take another view about what chronic sufferers must endure day to day.

I hope that these little steps will at least be some steps that bring us closer together and connect us again, rather than continually leaving us alone with our pain and tears.

Gentle hugs,

Trish.

Encouragement

I have always found it so interesting, and quite sad, that there seems to be endless support for those who may be about to join a gym, start a learning course, take a trip, move homes or change jobs, but very little encouragement is offered to those who struggle daily with health issues.

Why?

Is it too boring? Is it annoying? Is there really such lack of understanding and empathy out there? I honestly don’t know.

If you have a chronic illness that has limited your life and you have to do your best to fight on each day you would think that it would be a very worthy reason to warrant encouragement and support! But rarely does it happen.

You seem to become invisible and inconsequential. It is little wonder that suicide rates amongst the chronically ill are so high, and growing! The statistics are heartbreaking!!

I, for one, have always enjoyed the chance to wish someone all the best and encouragement as they start a new project, celebrate an event or start a new chapter in their lives. It is an honest and sincere gesture that comes from the heart. Perhaps I am naive to think that such gestures can also be applied to many different situations and events.

Encouragement doesn’t just apply to those about to do something fun or entertaining. Encouragement doesn’t apply to those who may possibly gain money or fame from a situation. … Yet it doesn’t seem to include those with health issues or challenges. I wonder why?

It has been my experience that in order for such people to receive encouragement and empathy they must meet in private or secret groups and must seek it from total strangers … It seems so incomprehensible to me!

For example, if someone was to start a new role or announce that they are entering a relationship there can be an outpouring of support and encouragement, which is valid and warranted from ones friends and loved ones … Yet… announce that you may be trying something new in order to improve your health or that you may be struggling and the silence is deafening.

What has happened to us as a society when we constantly reward and encourage many of the superficial or happier events or achievements, yet we turn our backs on the struggles and plights of others?

What does it say about the individuals who show lack of care or consideration?

Does it really take so much extra effort or time to encourage those who struggle the most, or try the hardest, to do what others take for granted?

I wonder.

Gentle hugs,

Trish.

Pred… and me

Say the word Pred to Autoimmunes and you will instantly be filled with a multitude of emotions and experiences that are almost incomprehensible.

To the Autoimmune sufferer it can be savior and pure hell in one drug.

The range of experiences can vary so much from person to person, but I think that the thing that unites us all is that we wish we didn’t need it and we would love to never have to take it if we could.

Prednisolone, Methyl Prednisone, Prednisone (Pred) And all its other names are steroids which are aimed at reducing the inflammatory response going off inside each of us. It can be taken orally or intravenously. Either way it is used for the same result.

The steroids taken by Autoimmunes are not performance enhancing steroids and should not be confused with them, although they both come with a multitude of side effects!

I have been on daily prednisone doses for nearly 10 years now and I will never come off them. My body and adrenal system is now dependent on this drug to help keep my body’s inflammatory response in check. However I also know that it doing damage to my body at the same time as it is helping me.

I will not pretend to be a chemist or a doctor but I can speak with authority about what I have experienced during my time on this drug. It is not an easy drug to take so I only take it because I absolutely have to.

Other than my daily dose, I take much higher doses during times of flares when my body is in heightened pain and my symptoms are going insane. I have even had this drug given intravenously over several days where the doses are extremely high and the step down or weaning off is excruciating. Generally speaking I will do almost anything not to have to take higher doses because of the side effects from stepping down but sometimes I have no choice. I personally find some of the psychological side effects and mood changes particularly difficult. It can take me from mania to deep depression and sadness within minutes. I am normally a peaceful, easygoing person and so I hate feeling out of control. I have become more aware of the side effects and can recognize them but I still don’t enjoy them. They are terrible.

Over the years I have also had steroids injections into the joints where the pain and inflammation is worst. The needles are not my favorite thing to do but the pain in those joints are so great that I would do anything for relief! Anything.

Over time the effectiveness of these drugs have started to decline considerably and I find myself needing higher and higher doses and it becomes a difficult cycle to break, and that is where I am now.

I try not to do pred loading or injections because it is such a challenge to go through and I am now at the point where it is no longer guaranteed that it will work as it once did.

Sometimes I feel as though a stranger overtakes my body during pred loading or bursts (whatever you wish to call it) and I hate it. Some of the side effects are as follows ….

• Aggression

• agitation

• blurred vision

• decrease in the amount of urine

dizziness

• fast, slow, pounding, or irregular heartbeat or pulse

headache

• irritability

• mood changes

• noisy, rattling breathing

• numbness or tingling in the arms or legs

• pounding in the ears

• shortness of breath

• swelling of the fingers, hands, feet, or lower legs

• trouble thinking, speaking, or walking

• troubled breathing at rest

• weight gain

• Abdominal or stomach cramping or burning (severe) • abdominal or stomach pain •backache• bloody, black, or tarry stools • cough or hoarseness • darkening of the skin • decrease in height • decreased vision • diarrhea •dry mouth• eye pain • eye tearing • facial hair growth in females • fainting • fever or chills • flushed, dry skin• fractures • fruit-like breath odor • full or round face, neck, or trunk •heartburn or indigestion (severe and continuous) • increased hunger • increased thirst • increased urination • loss of appetite • loss of sexual desire or ability • lower back or side pain • menstrual irregularities •muscle pain or tenderness • muscle wasting or weakness • nausea • pain in the back, ribs, arms, or legs • painful or difficult urination •skin rashsweating• trouble healing • trouble sleeping • unexplained weight loss• unusual tiredness or weakness • vision changes • vomiting • vomiting of material that looks like coffee grounds

Fun, right?!.. Not!?!

I have read of some long time users who have managed to stop using this drug and I have such incredible respect for them, but sadly I am not one of that group and I don’t see myself joining their ranks anytime soon.

I have endured mood swings, insomnia and heart palpitations of nightmarish proportions. And my husband endures them with me.

I hate the way I feel exhausted, weak, tired, pained, nausea and emotional whenever I step down off this drug and I can no longer control what happens to my weight and body shape when this drug is in control.

After years on this drug it has affected my skin (thinning) and hair (dry and falling out). My muscles have weakened and become harder to strengthen. My bones are more brittle and I bruise easily. Many times I am covered in bruises simply from my pets walking and jumping on me. I fall quite a lot and so it means my skin is almost permanently bruised.

My ability to fight infections is greatly reduced so I have come to obsess about cuts and scratches and I avoid flu and people with viruses like the plague. Even someone’s simple cold/ flu virus can have much greater consequences for me. It is another reason I have tried to avoid crowds and malls.

Although I know my body is aging much faster than my years due to these diseases and the drugs we are given to try and manage them, we have very little choices. Basically, we either take the drugs that they offer or we struggle, decline, progress and suffer without ever knowing how fast we can, and may decline. Sometimes these drugs are like a game of medical Russian roulette… we pull the trigger and we hope!

But we still hope.

Gentle hugs,

Trish

Luck

I recently watched an interview between David Letterman and president Barack Obama. I thoroughly enjoyed it. Regardless of what you think about either man or politics, it was an interesting and enjoyable discussion.

There was a point in the interview that struck me and made me think for several days about what they said. The topic was Luck.

Mr. David Letterman asked Mr. Obama about how they both got to be where they were when so many people with as much, or even more, talent and effort did not stand where they stood and haven’t done what they have done. Mr. Obama said “there is a great deal of luck in being able to get to these places. Being in the right place and getting the opportunities that many others may never get… Luck is a big factor that is always overlooked and underestimated”. I agreed.

You can be very good at what you do and work very hard all your life, but still not achieve what some others may achieve, or conversely, achieve things that others may only dream of. Chance and luck.

It is very hard in 2018 to accept that luck has any role in our lives these days. Randomness and probability seem like long forgotten concepts and have no place outside physics or mathematics classes. But we are wrong.

Why is it that some succeed and others don’t? Why is it that some find true love and others may never? Although I don’t deny that effort and energy are also ingredients it just doesn’t equal result. Luck is still a very important factor.

It is far easier to discuss the influence of luck when we are talking about good events or achievements, it’s a lot harder when we are talking about painful and life changing events.

Why are some people sick and others healthy, despite the fact that they may drink, smoke, eat unhealthily, not exercise enough etc? It’s not easy to answer. I still struggle with it sometimes. Why do some people respond to certain drugs and trials when many do not?!

And… Why are some beloved people killed in tragic accidents when there are killers and murders out there walking around unscathed? It seems almost incomprehensible!

I don’t believe in fate or predetermined paths but I do believe there is a lot that we underestimate when it comes to luck and chance.

No one is usually born thinking they are an unlucky person and most believe the cultural myth that we can be whoever we want and do anything we want, and that thinking otherwise is for losers and underachievers.

Of course I also think we have some very different perceptions on what is lucky… I recall someone saying that I must be lucky not to have to work everyday. True! Beggars belief!! Someone actually said that to me and many people probably think it! And… that it must be a lucky and easy life for my husband to be my full time carer!

The only thing I can say is that people say and assume the strangest things! … Perhaps a lack of knowledge and understanding is also a huge predictor on your life and what you will ever truly achieve.

However, I also had to ask myself am I unlucky to have to endure these diseases and challenges? I can honestly say yes I am very unlucky. Incredibly unlucky. Ridiculously unlucky to have so many illnesses and such a painful and reduced life. I am unlucky to be in such pain. I am unlucky to be unable to do the things that most people can do i.e. Like eating, walking, seeing, moving, partying, traveling, working and experiencing like so many other people all over the world. Heartbreakingly unlucky. Soul destroyingly unlucky…

and yet…

Lucky to have the husband that I have. The mind I have. The appreciation I have. The furry companions that I have. The view outside my window I have. The bed I have. The clothes on my back. The memories I have. The friendships I have had. The sense of humour I have. The moments of peace I have. Some of the talents I still have.

I wonder, when we are breathing our last breaths on this earth, will everyone of us feel lucky or unlucky?

Gentle hugs,

Trish