The Science of Coping – Part three #love #dignity #science #coping #lifeskills #writing #experience

invisible crown

Although a lot of people describe coping as though it implies one person only, but it has been my own experience that to cope in life you need more than just the skills we acquire on our own. We need others.

An important part of going through something can be knowing that others have been through a similar thing and that there are people who can, and will, understand how we might be feeling and acting. Sometimes connecting with those people can be one of the most helpful things we can ever do. Not all coping has to be done alone, nor should it be done alone. It is also true that when we feel alone it can impede our chances of coping successfully. There is a reason we form bonds and relationships in life, its so we can share and contribute to the human experience. We are social beings after all.

Finding the right people to talk to, to offer feedback, to listen to, to encourage us is just as important as the things we do on our own to help get through challenging times and events. Trust, respect and intimacy are all important ingredients to our relationships too, so sharing these times can help be the cement and glue to our love bonds and our friendships.

After any event that has tested you physically, emotionally, mentally etc there is a period following when you look back on the event in hindsight and start probing and asking yourself  “what would I have done differently?” or “What can I learn from this?” In the project world we called this formal process as ‘Lessons Learnt’ whereby the team gathers together and discusses events and makes recommendations for ways to improve in the future. This can be part of the coping process for all of us too if we look back, with a spirit of honesty and respect,  and consider ways in which we might improve our coping strengths and learn for the next time. Coping is a life long commitment to always try and learn and always building the confidence we need to go forward.

I would like to make a point of saying that blame and beating up on yourself is NOT part of healthy coping. If anything, these things will only serve to harm and damage our ability to cope and help our loved ones. To cope with life we need to believe ourselves worthy and worth the pain and sacrifice that it takes to get through. Like a mother endures birth, because she knows the sacrifice is worth it and that she is creating a new life, so to we have to believe that we are worth going through all that it takes to cope and make it through; and our loved ones are worth it too.

If we can focus on learning how to cope better, and gain confidence and self respect after each challenge, we find that there is more and more in life that we can navigate and learn from. Although we will never become perfect or ever run out of things that can and will test us, it helps to know we not alone and our imperfections and our challenges are what makes us who we are, and shows us who truly loves and respects us.

I invite you to please don’t ever be ashamed of the tests that life has handed you, no matter what they are, and wear your experiences with all the pride that a victor would wear their medals.

I hope I have not appeared to trivialize or pretend that any of these things I have written about are easy to do or come naturally to everyone. I have struggled and continue to struggle as much as the next person with life and I know that I will encounter many more times which will test me again. I hope as I continue to move through life I will continue to learn and meet people who will make these challenges meaningful and rewarding.

Also, I don’t intend that these lists be a complete and exhausted list of suggestions about COPING. My one sincere hope is that in writing this I have expressed my respect and empathy for all of us as we go through life and meet the challenges that life may bring. I also want to express my eternal gratitude to all those who have helped me through my darkest days and my battle with these terrible diseases.

Gentle hugs,

Trish

The worst pain of all #Pain #advocacy #Dignity #unite #lifeskills #writingforacause #autoimmune #chronicillness

autoimmune-disease-treatment-in-india

Judging by the posts of so many fellow sufferers out there I think the single biggest symptom that ALL autoimmunies share is GUILT.

We spend most of our illness feeling guilty about all the people we feel we have let down, disappointed, inconvenienced and upset.

Even though we might be suffering these feelings needlessly, however this pain is probably the hardest to control and there is no analgesics for it.

Lets work together to help control this debilitating symptom by supporting and reassuring each other!

Gentle hugs,
Trish

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Let’s get Physical #awareness #reallife #realstories #writing #advocacy #respect

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I was quite shocked when several months ago I received a letter from an Autoimmune group I belong to, who were trying to raise funds from members and the community. I was invited to participate and enter a “fun run” and I was also expected to go around my friends / relatives and gain sponsorship dollars for competing. OMG! I couldn’t believe my eyes! The words FUN RUN just stared back off the page at me!

I can barely move and walk unaided, and many of my fellow AutoImmune sufferers are in similar (if not worse) conditions. This group who are supposedly representing our diseases are inviting us to run a bloody marathon!! What message does that send to the community? I mean an afternoon tea? Maybe. A readathon? Possibly. A ‘buy-a-ribbon’? Why not. But a marathon!?! They even have media coverage of it!

What message does that send to those who have no idea the challenges we face day to day?

Each day we fight for respect and dignity and to try and educate others about the battles we fight and this is the way our own societies portray us… Is it any wonder that people have so many mixed messages and prejudice about chronic illnesses and Autoimmune diseases?

If people think we are capable of running a marathon or tests of physical strength then why would they believe me when I tell them I lose my vision, my limbs don’t move, I shake, or my bones are being eaten away, I struggle to swallow and breathe? That each day is a physical and emotional battle to overcome fear and disease progression?

True, there are some more ‘high functioning’ ones amongst us, however they may represent about 15% of the overall figure of those affected by various Autoimmune diseases.

I do fight my own battle every bloody day and I find these letters just offensive. (I also wrote and told them this too).

Everyday we are confronted with pictures of celebrities and personalities who are coming out with chronic illness and looking a glowing picture of health. However, I (and over 80 million others) can only WISH that were our own personal story. Where are the pictures of what a flare/relapse or progressive disease looks like?? I bet 99% of people would not know what agony and destruction a relapse or flare looks like and for those of us who are “systemic” it is a slow but steady decline and a long battle just to hang on to what we have left. All we can do is our very best to hang on to the physical functions we have and hope that someone will come along with a cure in the meantime. And that is what I do. I can’t know the future or even tomorrow but I am not going to be in denial about today!

Gentle hugs,
Trish

The Magnifying Glass

seeking

I remember years ago, rushing home to watch the last few minutes of Oprah and hoping it was going to be one of the more interesting episodes, and because I had missed most of the show I stepped in as Oprah was monologuing one of her meaningful life quotes…

“Oprah Winfrey and Robert Kiyosaki agreed that.. Money magnifies who you are.

That means, if you are insecure, impatient, jealous, impolite, arrogant, low self esteem, no self-confidence, fearful, angry, unhappy, irritated and emotional or just plain negative when you have no money, guess what? Yes, you will become more of that when you have money.

On the other hand,

If you have a positive character like high self-esteem, confident, loving, well mannered, patient, fun, happy, humble, poised, aware,logically practical then you could expect to become more positive in your overall attitude in every trait that you have.

Money will never repair a poor character.”

I agreed entirely at the time and those words have often come back to me in the 15 years or more since I first heard them. Especially when I have faced some pretty tight financial times and my husband and I almost lost our home.

I have also thought about them with respect to my health challenges over the past 10 years. It comes up in my mind when I think of who I was before I got sick and what happened as a result of these difficult and challenging life events.

Before I became sick (and then eventually diagnosed with Autoimmune disease/s) I was an anxious, people pleasing, stressed, insecure, results driven, workaholic, control freak who didn’t really have a deeper love and appreciation of myself. Always trying to validate myself and striving for achievement; often very overly analytical.

Then I got very sick…

And those attributes were indeed magnified, and often the source of a lot of my pain and anguish when I realised I could no longer do physically all the things that made me feel worthy, capable, appreciated and self sufficient. My insecurities went into overdrive! Instead of money, my character flaws were indeed magnified by my illness and pain.

As I look at some of the posts by many of my fellow Autoimmune fighters and read some of the pain and suffering they go through, I often wonder if, like me, who they were prior to becoming ill has also been magnified in many ways and is causing them as much pain and suffering as it caused me? It started me questioning that whether ANY life changing event has the same effect and it makes sense that it would.

My mother would often tell me that “you see peoples true colours when the chips are down” and I think that possibly one of the things my diseases were showing me was who I really was and what I would need to work on if I was ever going to survive my life long illness.

For the past several years that is what I have been doing and working on. It has been just as challenging and painful as my diseases, but I am proud of some of the real changes I have been able to make.

My old ways were not working to help me or sustaining me in my fight. My old flaws were only holding me back as they were clearly being magnified to my own detriment.

Not ALL my characteristics were hindering me, some were also keeping me buoyant. My humour, my love, my compassion, my resilience, my imagination, my empathy were struggling to keep me afloat; sometimes barely.

After all these years I can say that I have successfully tamed some of these characteristics and developed much more helpful ones that have made me handle my challenges far better and I have learnt how to validate and respect myself now, more than ever.

It doesn’t make all the pain and frustration disappear but it can change the way that I look at my challenges and how I cope with them. It also made a meaningful difference in the relationships I have now.

Gentle hugs,

Trish

Dating – Chronic Style #Love #Dating #Chronicstyle #lifeskills #selfworth

love heart

Just because our bodies may not behave the same way or do as we would like them to do does not mean that we don’t still have a heart and feelings. Far from it. We use and value them a lot more. My change in my health meant that my hubby and I had to look very closely at our relationship and the way we show and express love for each other. Some things have most definitely changed for the better and somethings have been made quite difficult and challenging. Trust and Respect are the pillars on which our new life has been made possible and I cant imagine it would be any different for someone who finds themselves single and looking for a partner.

I read a lot of posts from people who are single and having difficulty looking for love, this makes me ache with empathy and has also made me ask some very real questions. Is it any harder to find a loving, caring partner if you have a chronic illness or autoimmune disease? If I were single tomorrow how would I handle this question?

First of all, I remember it wasn’t easy finding a good ‘match’ when I was healthy. It didn’t just fall in my lap and so if I was to face the prospect again I don’t think I would go in with expectation that it is ‘easy’ but I would also not think its impossible because I was ill. We underestimate ourselves when we sell ourselves short. I am still a LOT of good things AS WELL as having a chronic illness. You have to believe in the product don’t you? I don’t think I deserve anything less just because I come with a health condition. Many other people have ‘baggage’ so I am pretty sure that a if I had to look for a partner I would want to find someone mature enough to understand that life is not perfect and people are more than the exterior. It might take a emotionally mature person to recognize all this but I don’t believe I would want anything less. My illness has matured me A LOT so I would also want that in a partner.

My health has also opened my eyes to finding that friends and connections come in many different places and packages. Looks are deceiving! I would probably want to keep an open mind to where I would look for a partner. Online dating? Maybe. Fellow fighters? Maybe. Someone with a history of empathy and selflessness? Possibly. Put simply… I spent years reading and researching my Autoimmune illness and trying every possible ‘get cured’ diet and medicine under the sun, I left no stone unturned…so why wouldn’t I put that energy and commitment into finding someone to share my life with; especially when I value my time and energy so much more.

Years ago I based a lot of my own self worth on who I could find as a partner, now I think I would start with the opposite view. I know what I have to offer and I would want those things acknowledged. I know what I value in others. I would look for those things still. My current husband has wonderful qualities that I admire and that have nothing to do with my illness, but I probably appreciate more since my illness, and I think those things are important if I had to start again.

These days we tend to ‘label and stereotype’ men and relationships but I think we don’t help our cause. If we think that ALL men are shallow and only looking for one thing, then we wont really be giving them a chance. If we expect the worse then we tend to always find facts to back our beliefs. The men I have met since getting sick have been some of the most sincere and ‘real’ men and there are some wonderful men out there looking for respect, honesty and love just like anyone else. I don’t expect every man will be lining up for me, but I would like to assume that it wont be because I am sick. There are many reasons people don’t connect as a couple. There were many reasons my previous relationships didn’t last when I was healthier. I would try to remember this if it took longer to meet someone right for my current circumstances.

Because my challenges are very real I would be very clear about how much honesty and respect is to me. If it is important to someone else then I hope they would treasure that about me too. If it meant waiting for the right person, I would have to wait and trust that after all I have been through and all that I have fought for, someone would treasure my spirit and character as much as I do. It may seem like this is easy to say because I am married, but I did offer my husband the opportunity to leave when I got sick and I DID face all of this, and I am well aware that there are no guarantees in this life so I didn’t write this lightheartedly or unrealistically.

My ‘list’ of requirements I had has changed. I don’t need a long list of things anymore, just a handful of essentials. Looks don’t matter. Money doesn’t matter. Age doesn’t matter… Character matters the most now. I am also much more open minded about how I define a relationship and how it has to ‘look’. It isn’t important to me how it ‘looks’ anymore but how it feels to the parties involved. At a certain place in my life I realized I can write my own rules and still have a healthy relationship, as long as it suits me and my partner and meets our needs then it is OK. I think I would take this into a prospective relationship and focus on how it felt, not what it looked like to everyone else. Very few peoples opinion matters to me now; you find out what is important when you live with a health condition.

I think that while there are many hurdles to being ill and dating, the biggest battle would be to remember what I am truly worth. Remembering to respect myself and don’t sell myself short because I got ill. Remaining open minded. Believing in myself will always be the biggest challenge, sick or well, but as my mother once said…”You don’t have to believe in a god, you don’t have to believe in Santa, you don’t have to believe in miracles. You don’t even have to believe in what I tell you… But in this life, if you want to survive, you DO have to believe in yourself!”

I have learnt a lot about believing in myself since then, and I still believe in love. It is the reason I am here today.

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

The Science of Coping – Part two #coping #science #help #support #meaning #lifelessons #surviving

I have found that my own personal coping strategy has many different stages, much like grief, sometimes grief is one of them, and I work through the stages as often and as well as I can.

Acknowledging – A big part of coping in situations where I feel out of my depth is acknowledging that I feel out of my depth. I always used to stall this stage because I thought I wasn’t good enough, or I was weak by admitting that I felt out of be depth or not coping (another big factor is my childhood, I wasn’t allowed NOT to cope or my feelings were not considered). As an adult I have come to realise that life is generally harder on us because we tend to MAKE it harder by not acknowledging that it is normal to feel out of our depth and outside our comfort zone.

Communication – It is such an essential tool that I really don’t know how I have missed this for so much of my life. Probably because I didn’t know any better. “When we know better we do better…  [Maya Angelou]” So I have given myself permission to say firstly to myself “I am not coping with [this situation] and its OK. I need help and that’s OK too. I don’t have to be perfect all the time. I am not required to know all the answers. I am not helping myself by being hard on myself in a time of need. Then I need to turn that into a conversation with anyone else involved in my life/care. Same thoughts, but this time with a request “Anything you can do to help me would be very much appreciated. Thank you.”

Give in to the process – When I am faced with a time that I am not coping with, or a situation I am not coping with, I have to be prepared to ‘give in to the process’, let go of the reigns, believe that although I am not sure how each step is going to look like, that it is OK to take it slow and just breathe. None of these things are easy if you have a ‘controlling personality’ like yours truly here. But I have had to realise that control is an illusion and life will always remind us of that. We are not in control of what happens, simply how we react. I am getting better at this stage but I must say that I do prefer it when people consult with me from time to time about what my options are and be respectful that its not an easy experience or time for me. I think that if we find ourselves in places or with people who are NOT respectful of these things we have the right to find another process / assistance / support etc.

Pep talks – Self talk is important in times when our coping is tested. Is it your nature to be down on yourself? This is when it comes out! My default setting for self talk is echoing the words that were said in my youth and not believing in myself or being down on myself. Its been a life long battle to change this and I suspect that it might also be the same for many other people. Remembering to tell myself that I am so proud of myself for even trying something new, or encouraging myself to continue to learn from the situation. I can remember sitting in my GP’s office and bursting into tears after battling for almost 7 years. I said to her “I don’t think I can cope with all this! All the symptoms. All the pain. All the guilt. All the confusion. All the frustration. Juggling all this every minute of the day! Its too much!! I broke down and cried. I cried hard. She looked at me and said “If you were not coping Trish, you wouldn’t be here today. You wouldn’t be dressed and sitting in my office with your husband. You would be institutionalized somewhere, probably without your husband. You need to give yourself some credit sometimes. She was right. Coping doesn’t have to look any particular way… it is simply doing your best. And I do. Everyday of my life. I am sure you do too.

Don’t compare! – Someone else will cope differently and react differently to situations, that’s OK, that’s their life, not yours. This is another really hard thing to remember especially if we have convinced ourselves that we ‘should’ be able to cope or do better, or as well as someone else. All the comparing under the sun changes nothing. All the wishing changes nothing. Only the ‘trying’ changes something. You are trying and that’s all that counts.

Rewarding yourself – If the ‘situation’ is a short or long, you really need to remember to reward yourself along the way. For example, I like flowers, classical music, books and girly things. I know what helps cheer me up. So does my support team (Hubby, friends) so if I need to cope with something or do something I am not finding easy, I remember to treat myself along the way. Listening to music, scented candles … you get the picture… just because you are dealing with a difficult or challenging situation doesn’t mean you cant break it up into smaller pieces with a little bit of something calming or nice thrown in along the way.

Emotional release – If you feel it, show it. Just don’t let it consume you. A partner, friend, relative someone who knows you might be helpful to just be there while you release, or you can do it alone, which ever makes you feel more comfortable and can be aware of if you might be becoming consumed in by it. When my mother died I thought I was going to cry myself to death. Out of compassion my husband said “I don’t want you to stop grieving or crying, I just want you to take rest breaks too.” I did. He was right. It helped.

… to be continued