A good boundary #lifelessons #dignity #skills #health #love #support

There is an old saying “Good boundaries make good neighbours”… this has never been more true than for those facing serious illness, diseases or disabilities. Although it is also one of the HARDEST things to do during some of the most painful and physically challenging times of our lives.

When I was healthier, and in much greater command of my body and actions, I could more easily aid myself in being able to set limits and boundaries about who has access to me,my time, my body and my efforts. That was the body I lived in for most of my life. That was the body I lived in, worked in, entertained in, loved in and planned a future in; that is the body I no longer have today.

The body I have today is unpredictable, painful, uncooperative and at the mercy of medicine, the weather, the doctors, pain, the healthcare system and the fates. I don’t have the same privileges and abilities that I once had and I must relearn how to interact with the world I once knew.

The great irony of the health system is that although it relies on those in need of medical assistance for money and to justify its existence, it actually does very little to work in with the needs of those seeking medical assistance. For example. If you go to hospital you are subject to THEIR rules, their timetables, their staffing, their attitudes, their administrative requirements etc even though you may not be capable of fitting in with any of these due to being not well or sick. Similar to the way that governments are more designed for helping and assisting politicians and public servants more than it actually helps citizens or tax payers. Even though you may be desperately in need of relief and assistance you will find that you will rely on the timing and requirements of hospitals and administrators even though you will ultimately pay for the privilege and have to live with the consequences.

The need for boundaries might mean that you are very clear to doctors, nurses, administrators [whoever] what YOUR wishes and desires are and be prepared to stand by those requirements. Even at your most weakest moment. In these cases the old saying that ‘fortune favours the prepared’ is probably your strongest ally when it comes to fighting for any of your rights. My husband has been my inspiration here. He always says that the test he uses when asking something of the medical profession he asks himself “is it fair , is it respectful and is it reasonable?” If the answer is yes then he [and we] must be prepared to put up that boundary on our treatment. Nothing about becoming sick should require you to hand in your rights to dignity, care and respect, but alas, you will need to fight for them. If there are readers out there who have no idea what I am talking about then I envy you, your luck and your health care; for those of you who DO know what I am talking about, you are not alone!

Another boundary I never imagined having to re-establish is the social one. Although prior to getting sick I was an incurable people pleaser, I can not afford to let my health be at the mercy of other peoples wishes or expectations. I learnt that very quickly into my illnesses. People still wanted, no demanded, the old me to do what I used to do and behave as I used to behave, but I couldn’t… and I can’t any longer. I had to rewrite the rules and it takes a lot of pain, suffering, guilt and tears when you start rebuilding something like that from scratch. Usually because a good part of your confidence and self worth was tied into how you interacted with friends and family.

Even now, during the hardest years, I cant manage to keep the simplest of dates or appointments with friends and fellow fighters who want to catch up. I have become a recluse in my home, and not out of choice. My home has become my sanctuary and my refuge as I fight battles that very few people ever understand. Days, weeks, months and years can go by with very little opportunity for time spent doing ‘fun’ and entertaining things. This is not how I wanted or planned it to be but it is no longer at my discretion or will. It is entirely up to how capable my body is. I am its caretaker, its keeper and nurse. To add another cliche into the mix  “I can no longer write cheques that my body can’t cash…” todays budget is very, very lean and usually spent by the time I shower and dress.

I also have to recognise that those boundaries must include and extend to those fellow sufferers who would like (and sometimes deserve) more of my time and physical presence. Those who may have a similar diagnosis as me but NOT a similar reality as me. This is perhaps the hardest boundary I have had to work on because within one diagnosis there can be so many shades of abilities and disease activity. For example someone who can still see to drive, or be cable of eating most foods and walking for a reasonable amount doesn’t  always understand that just because THEY can do those things doesn’t mean that I can. People can still struggle to grasp this, and I do too. I wish my level of disease activity and restriction was much less and more like some ‘higher functioning’ Autoimmunes, but I can no longer waste time and energy wishing for things that make no real difference to the bigger picture. I recall a fellow sufferer who would not concede to my right to privacy at a time I was visually impaired, lost my bladder control and could not breath without assistance. They were determined to visit me even though I said my personal pain and dignity required that I be left to rest. Their reason, while seeming logical to them was “…Its ok, [they] can handle it…” I was astounded that in that moment their requirements to socially interact were considered as more important than my rights to privacy and dignity. I was heart broken.

Good boundaries means being able to say NO and accept others personal boundaries too.

Explaining to people my level of abilities, my unpredictable diseases AND allowing myself to set down boundaries is not only my right but my very life  / health depends on it. I can’t afford to feel guilty about it. I can no longer feel stressed or upset by it. when it comes to good boundaries I am not fighting for an imaginary line in the ground, I am fighting for my life and the quality of it. I also wish you every respect and best wishes to you on your journey with boundaries and I hope this helps make it a little easier.

Gentle hugs,
Trish

Sexy sick me! #sexy #bodyimage #selflove #respect #dignity

When I first became ill and my body started slowly breaking down, one of my top 5 concerns was how much my husband, or any man, will see me physically. Of course there were other things that rated higher like 1. What is happening to me? 2. Can I/Doctors  fix it ? 3. Will I lose my job? 4. Will we lose our home and 5. Will my husband still see me the same physically?

Although I have some of the answer to those I have to admit number 5. still comes up many more times than I would like to admit.

As women we are judged by our looks, our attractiveness, our desirability, our sexuality, our ability to make a home, our ability to ‘have it all’. You cant drive down the street without seeing how much sex sells and how important looks matter to many people out there.

Where does that leave those of us who struggle to walk? Struggle to move? Struggle to see? Struggle to breathe? Struggle to do our hair and make up?… Struggle just to live. Not easy questions to be confronted with by a world fixated on image, looks and perfection. I don’t think it means that I was shallow, I just think that it shows how powerful the media and ignorance is. This Century has become the millennium of the multimedia, celebrity obsessed, botox injecting, instant gratification, pretend-to-be-sexy-and-young-forever, superficial.

When you are backed up against an insurmountable wall like that you have no where to run – even if I could! What did I do? I grieved. I grieved the health and the body I once had and realized I may never see her again.  Just as an 50 + woman looks into a mirror and realizes she isn’t 18 anymore. I let myself grieve. The fight for my very survival meant that I had to look beyond the mirror. Much deeper to find the reflection of who I truly was and who I wanted to be.

The past 10 years has been a real journey of the soul. Rebuilding a spirit and identity from the shattered pieces of who I was and the things I really want to be. The past 10 years have changed the way I look. My weight has fluctuated with my meds and my mobility. My skin has changed with the meds and age. I am paler and can no longer tolerate very little sun. My hair has changed. My mobility changes all the time. My joints are damaged and sometimes I can creak and crack louder than a falling tree. Although the outside of me has changed over the years, what I was not expecting and what I never truly realized was that inside of me was being made anew.

I think back to the body conscious days of my 20s and 30s and my pursuit of attractiveness and desirability. Was I truly confident back then? No way!! Inside I was as fragile as my last relationship. A walking bundle of phobias and anxieties. I was concerned about my hair, my nails, my weight, my ability to catch attention and draw the eye. I was nowhere near the woman I truly wanted to be. But I am closer to her now.

Yes now. Even with all the shakes, the tremors, the mouth sores, the pain, the weakness, the balance problems, the damaged joints and nerves. Why? Because I have been to hell and back. I keep going there every day. I know what real substance and character is. The values that I now desire above all isnt found in a beauty magazine. Cant be put on twitter. Cant be injected into your face or thighs. Real beauty and character comes from showing your true self (imperfect and laid bare) and accepting it with dignity and wearing it with pride.

What makes us beautiful is something that cant be faked. That’s why sexy stars break up all the time. Models are continually going under the knife in the pursuit of …. well… nothing. Today’s model is tomorrows memory, but character, that is timeless.

Back to my husband and I. Did he look at other women before I got sick? Yep! Does he look at them now? Yep! Does it hurt? Nowhere near as much as it did because I realise that while he might be genetically programmed ‘to look’ until the day he dies, I am now reprogrammed to believe I am worth just as much as any woman on this earth. Any PERSON on this earth because I know what it means to be human and be merely mortal and how health and looks can and will change (sometimes suddenly) but if you can put together a person with courage, character, empathy, compassion, intelligence and resilience then you will have something much longer lasting than a tight butt or a firm breasts.

Do I still get my hair done? Do my nails? Enjoy fashion? Yes! Definitely! But I do it as an expression of what I enjoy, not out of fear or a need to compete with the rest of the world. Respect for myself means I will always try and do my best. It means I will always enjoy the simple pleasures. I will take care of what I can care for. I will tend to the things that are worth tending to because it shows I care. My fears of whether men find me attractive no longer fuel the way I experience the world and enjoy my body. Now it has become more of a question of how much I like me. I may not like these illnesses and symptoms I carry every day, but I love the woman who carries them. More now than I ever did!

Gentle hugs,

Trish

My heart #live #love #respect #care

love heart

If my heart had a window
you could look inside and see
all the things you put inside
and all you mean to me

If my heart had a window
you could see how much I try
to meet each and every challenge
with every day that goes by

If my heart had a window
you could see how much it breaks
when I fall and when I stumble
and when my body aches

If my heart had a window
you would see through all the years
all the laughter and all the loving
all the courage and all the tears

If my heart had a window
and you looked inside today
you would see after all these years
this is where you stay.

Gentle hugs,

Trish

The Three R’s #coping #lifeskills #truth #live #life #respect #humanity #illness

Autoimmune-Diseases-Medical-411

The three R‘s of surviving a chronically ill moment

Rest. – Its pretty simple. Its more than an ‘option’ it is a requirement for someone with a broken immune system or other chronic illnesses. Go somewhere, anywhere and REST.

Release – Whatever it is that might be worrying you at the time, that might have you feeling anxious, guilty, worried, sad, lost, alone. Breathe. Think about how you might be feeling in the moment and… release. Breathe and release. Let it go while your body needs you to go into caretaker mode.

Remember – You are loved, you are important, you are valid, you are human, you are perfectly imperfect. Your life doesn’t have to look a certain way in order for it to have meaning.

Gentle hugs,

Trish

Mothers Day #thanks #mothers #chronicillness #love #respect #lifeskills #coping

I can remember being in hospital when Princess Diana was killed. The media covered every second as it played out over several weeks; probably even months. The media will always lunge onto some human tragedy and pick the bones dry before moving off to devour (or invent) the next storyline. But I wont bore you with my thoughts on the media, and why I stopped watching TV several years ago. That will be another time.

I can remember laying in my hospital bed and being bombarded with pictures and speculations, and then for a brief second a picture of Diana’s two boys flicked up. Two little boys. Honestly they looked like they never really understood the media circus that was going on? How could they? They were just two little boys who were now without their mother. That is truly what any tragedy comes down to. No matter what the rest of the world thinks, feels, says, does. Its the human experience which separates those who watch and those who feel.

Going through life without a mother or mentor is not easy, especially when we are going through some of the hardest times of our lives. As I write this it is coming up upon Mothers Day and I think to myself one of the many things that I have missed about my own mother is that she was gone before I got very sick and so she doesn’t know the challenges I face every day. There is no motherly ear to hear my thoughts and experiences. I cant pick up the phone and tell her what is happening or how worried I may be. The human experience.

I can only imagine how difficult Mother’s Day and Father’s Day is for those who face similar challenges and daily struggles, not being able to turn to a parent and share these difficult times. When we lose the parent/s we are closer to, it is indeed a life changing experience. The parent – child bond can be a very special one and irreplaceable one. Learning how to parent yourself and love yourself unconditionally is often a very difficult skill to master. When we lose a parent we have to care, comfort, reassure, encourage and validate ourselves even during our darkest hours.

Although many parents encourage us early in life to reach for the stars and ‘be all you can be’ and can probably want more for us than they might have had, I am sure that deep down all a parent really wants is for us to live happy and fulfilling lives. I like to think that although my mother is no longer alive, that’s all she would want for me today. The human experience. If she were alive today, although I am sure she would be quite worried over how my health has declined, she would also want me to live a life I can be proud of. And I am. I believe that for others out there who have faced these difficult health challenges and pain without a parents love and encouragement, I know you can still have a life that you can be proud of and that would make them proud too.

In loving memory of my mother,

Trish