I am so honoured to be invited to write for another 2 wonderful advocacy groups.
I feel I put a lot of love, passion and empathy when I write and I hope it helps spreads awareness, acceptance, compassion, dignity and respect.
We all deserve it.
x
Trish
Our family is growing!! Yes we have added another site to the Autoimmunity family “Chronic Traveller” is now on Facebook and we hope you will join in the fun and share your travels, your experiences, your pictures and your passion for traveling with your wonderful fellow Autoimmune / Chronically Ill / Disabled community. Its not JUST for us as we would like family, friends, carers and partners to join in too!!
All you need is a love for travel and fun!It is also particularly wonderful if you happen to be unable to actually travel, due to health issues, as it lets us share in the experiences of our wonderful community out there!
Looking forward to meeting you all and sharing some amazing stories and pictures!
https://www.facebook.com/pages/Chronic-Traveller/474994332657578
Three words that will strike fear into the heart of anyone who has an autoimmune disease or chronic illness…
“How are you?”
It has been my experience over the last decade that the 80+ number of Autoimmune diseases could very easily be renamed to calling them all FIGHTERS disease.
– From the moment you start developing symptoms and pain you will spend your time FIGHTING to find a doctor who will listen. Many people who have autoimmune disorders have a difficult time getting correct diagnosis. In some cases, people are mistakenly diagnosed with other conditions. Other times, doctors tell patients that their symptoms, which are often vague in the case of an autoimmune disorder, are just in their heads or are stress-related. The quest to find a doctor who can arrive at a proper diagnosis can be difficult. The average time for diagnose can be up to 8 years.
– From the moment you develop an Autoimmune disease you will fight to keep your job, friends, mobility, respect, relationships, social interactions.
– You will fight to do the things that people take for granted like, walking, moving, eating, bathing, speaking.
– You will fight to find medications that actually help and assist you in your ability to manage your disease/s. This can take many, many years (if ever) and countless number of combinations and side effects can make you wonder if the medications are actually helping of making life worse.
– You will fight to get your friends / family to understand your daily challenges.
– You will fight to find others to connect with and understand what you are going through. # Note: Just because someone might share a diagnosis as you, you may find you have NOTHING in common with them on a personal level or even in your disease activity or progression. Out of 1000 sufferers you might find a handful of people you connect with.
– You will fight your own self criticisms and fears. They can be loud, even deafening at times.
– You will fight to be able to fit some life into your illness and do some things that you actually enjoy and that bring you peace and happiness.
– You will fight to retain your dignity and integrity, when your body is no longer predictable or your health is no longer reliable.
– You will fight to remain as part of the world, if your life has changed dramatically and your illness/es are progressing.
– You will fight to show how much you love and care for people, without being able to physically do things for them. Finding new ways to communicate and nurture those important relationships is often a very difficult challenge of these diseases.
– You fight to find your feet and strength after every let down, disappointment and being pushed and shoved from specialist to specialist and doctor to doctor. You get used of being put in the ‘too hard basket’ and riding the ‘specialist’ merry-go-round. You often want to give up in disgust and sadness.
– You fight the ignorance and judgements from the healthy world. You may be told that you should change your diet, change your attitude, change your exercise program (if you can exercise regularly) … and many other forms of ‘patient blaming’ all aimed at making you feel responsible for your circumstances and your prognosis.
– You fight to rebuild your life; sometimes rebuilding anew everyday.
– You fight your insecurities, frustrations and emotions.
– You will fight to find peace in the midst of so much emotions, confusion, frustration, pain and the unknown.
– However, to love and be loved becomes the most important fight of all.
Gentle hugs,
Trish
So after years of reading all the ‘power of the mind’ messages. All the detox, cleanse, healthy, low inflammatory, aunty Emma’s cure all’s and body healing ointments, all the meds that any specialist could throw at you, you may find yourself still progressing with illness and the worst case scenario’s may still be coming true. What now?
What happens to those that have done everything they could, done everything they were told and fought as hard as the could for as long as they could and STILL they have pain, a myriad of symptoms and not a very good quality of life? What happens now? Is it possible to find positivity anymore? What would positivity in these circumstances look like?
There are no simple answers for those who fall into this group and there doesn’t seem to be much by way of empathy either. You may be labelled as a lost cause by many, a cautionary tale by others but very few people will truly understand your body and your health’s limitations. Very few, except you, and maybe your carer or spouse.
It seems hard to find the right words to say at this point because while current medicine and alternative measures may have failed you, you must still face the difficult task of finding a way to keep going although this could be agonizing and difficult at times.
Your world may now be defined by the boundaries of your bedroom, or wherever you may be moved to. You may be reliant on a number of devises and aids to do the simplest of things and life may seem to be one long ‘ground hog day’ which can repeat over and over. So what can life offer now? There are no manuals or support groups for this point in your life. If there is I haven’t come across them yet. No one likes to even think about these types of scenarios, let alone talk about them. There are no motivational booklets and quirky little motto’s that can possibly remedy this sort of situation. Except, maybe, one. Love.
At this point in your journey Love may be the only thing that is seeing you through the days, months and years. Love is what is trying to pull us trough the tide of emotions and pain. Love is why we continue to put on a brave face and what we hold on to when all is said and done. Love for our partners, love for our children, love for our friends, love for our fur kids. We exist entirely for those reasons.
I think once you become bedridden and progressively disabled. There is no presumption, no competitiveness, no false modesty, no time for vanity, no room for delusion or need for explanations. You must accept that you are who you are and that life has many, many different states that few in this world can comprehend. Your truth is what you live with every moment of the day and no one can tell you what you ‘should’ do anymore. And you need not conform to anything other than what you need to do to survive.
When at these points I think you have earned your right to speak loudly and proudly. You have earned your stripes on the battle field and no one should tell you what to do. Your voice is now your true identity and I encourage you to use it. Tell people what you need and what is needed, without fear or hesitation. They are not going through this, you are. Think about what you ‘can’ do (even the smallest thing) and discuss ways in which this might be included and managed. For example. If you like music. Can you listen to some for a little while each day? Can you read? Can you draw? Can you bare a visitor for 30 minutes? Do you enjoy more time on your own or with a beloved animal? Whatever the whim, indulge it with relish it with a passion unknown to others. Soak it in. Swim in it. If you feel the pull on your heart to say something say it. Cry. Smile. Touch. Rest. Whatever… You have earned it.
If you have any desires left that you would like to imagine. Be selfish. Put up boundaries. If you cant be visited then perhaps you might prefer to skype once a week, or just tell someone people that your preferred forms of contact and don’t feel guilty about it!.
Find a team of health carers who will come to you when needed. If you want to have some personal grooming, and you can handle it, find someone who is willing to come to you. I guess I am saying, don’t let regret, unworthiness or self doubt get comfy at this time. Its normal to wish that your life had a different destiny or path. Its normal to want the pain to end. Its normal to wish it wasnt happening but for better or worse this is the hand that was dealt and we must somehow bare it.
If you are able to reach out and find someone who might be going through a similar stage of life, do so. If they share and respect your feelings and you find comfort in sharing your thoughts and experiences with them, then it can be a truly rewarding connection and worth the effort to cultivate.
I still like my bedroom to be surrounded by pictures, pretty things, smells, life, cuddles, sounds, nature, and love. That is my choice. I don’t have to explain my choices anymore and I don’t feel I need to defend my wishes anymore. I have lost so much that I don’t fear losing people who bring no peace or quality for me at this time.
I don’t feel obliged to meet anyone’s expectations but my own. I treat people with the respect I would like to be treated and I don’t over invest in other people’s opinions or drama.
When all is said and done. The things that I have left and treasure the most is the inner peace and self worth that I can give myself. The honour and respect that I pay to myself. I don’t pity myself nor look for validation. In the end I am truly me and I hope that you find your own reward for having fought your way through the challenges of life. Sometimes if I close my eyes I feel like I can connect with you all and feel you all wherever you are, all over the world, and that brings a sense of comfort that no medicine can give.
Gentle hugs,
Trish
When your life changes and your body changes, it can happen in an instant.
But our hearts, minds and emotions can take years to catch up!
Gentle hugs
Trish
What I have learnt after nearly a decade of debilitating illness/es –
– A lot of people will have their own opinion on what you should do, should have done… Your opinion is the only one that matters
– A lot of people are just not going to understand. Even doctors who are around sickness and pain all day, Its just a job to them, Its just a word to others… but its a life for you. You are the one that has to find peace in your own mind.
– Acceptance is not a sign of giving up and being lazy. It is understanding the truth of a situation without your ego or others prejudice dirtying the water.
– We should not be valued by what we do physically and achieve through strength but who we are as people and what we give through our spirits and minds.
– Overcoming a situation doesn’t mean that you become healed or cured, it just means that you decide it wont hurt you anymore or eat you away.
– Just because you might share a disability, illness, diagnosis with someone doesn’t mean you are going to agree or get along with them. Who we are inside doesn’t change that much when we get sick, but we can respect them.
– Don’t assume because you are struggling or suffering that anyone will help you. You have to have a plan for how to survive if its just you on your own. Put a plan together as soon as possible and keep it safe. It has to include how get food and medication, even if you couldn’t move. Emergency contacts are the most important things in your life.
– Dont assume your friends / family will behave any differently even if your world has changed forever. That’s just the harsh reality of life.
– You will find compassion and understanding in the most unlikely of places, always be prepared to be surprised.
– Learn to say “NO” without feeling guilty or a failure.
– Learn to say “Help” without feeling embarrassed or unworthy.
– Forgive yourself. You did nothing wrong. Repeat every day.
– Invest in yourself! If you can afford or do any little thing that makes you feel happy, part of this world, brings you joy etc DO IT. BUY IT. HAVE IT. MAKE TIME FOR IT.
– You will work harder on your self esteem and emotional maturity when you are sick then you EVER did when were well, because you have nowhere to run or hide.
– Controlling your mind and your thinking is your greatest asset. You cant let the fear of tomorrow and the future sit with you every day. We cant see the future, and when you are sick that is the blessing and the curse.
– What ever you decide to try (medication, medicine, diet, exercise, advice, instruction, meditation, affirmation etc Do because YOU want to, Follow YOUR heart and judgement. Its YOUR decision not anyone else’s. Follow your inner voice. You are finally at the point where you have no one to impress or appease but yourself.
– There are going to be many time you will give up on life and want to die. This is not a sign of your moral weakness but a sign of how much you suffer. Don’t let the world tell you how to feel about these moments. They are not the ones suffering. They have nothing to understand and compare with your suffering. Its not a sign of your mental instability or moodiness. You are human and you are in pain.
– No one has the right to judge you.
– Dignity and respect will come from how you treat yourself. If you believe you are still worth love and compassion, you wont let anyone take it away.
– Set up boundaries and keep them! If you don’t want people invading your space, seeing you, touching you, or asking too much of you. PUT UP BOUNDARIES! They don’t have to deal with the your illness and pain- you do! You can politely say “I cant / Don’t feel up to that thank you.” And dont feel you have to explain or justify yourself!
– You are still allowed to be human and make mistakes. Your healthy peers are allowed to, and so are you.
– Forgive yourself.
– You probably find that your illness means you don’t understand or enjoy 99% of the all the madness that goes on in the world. Good. Let it go. You don’t need it. Your eyes have forever been open to what really matters.
– The best goal that I have found to aim for is peace. Inner peace. Its the only goal I can still truly achieve for myself.
– The world may have an opinion of what your life means but yours is the only one that matters.
Gentle hugs,
Trish
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
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
x
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
Autoimmunitygirl 