Some assembly required #staystrong #help #kindness #beinghuman #selflove

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Remember how sometimes when you get somethings home, after getting them home, and you open up the package on to find those words “some assembly required” written on the box! Funny how they didn’t warn you when you were buying it!

So you start to work on trying to put it together and make it work only to be left frustrated and very, very… what’s the word? ANNOYED! Sadly, try as we might, we can’t assemble it on our own. Then we face the awful truth. We might have to ask for help. O. M. G.!

Who do we ask? How do we ask? Sometimes asking for help is the hardest thing and makes us feel a bit vulnerable and needy. But what if we are the thing that needs help putting together? And we find we can’t do it by ourselves. What do we do then? What can we do then?

I read so many sad and heart wrenching stories of people barely managing to cope and struggling by under the most difficult of circumstances and indescribable challenges. I read their stories and the tears start falling. I am want to help. I would probably even hurt myself trying to help, but I cant help them. Help is, however, definitely what we need.

When I was a Project Manager and starting a new project for the first time, one of the firs things (amongst many)  that I needed to know was who I had on my team and what ‘resources’ in order to have an idea if the project could / would succeed. Same as anything we try and do in life. We all need help, people on our team and resources.

If you have the life long task of trying to manage an illness then you need ALL the help and resources you can get. Family, neighbours, doctors, specialists, anyone, everyone. Anyone who can AND will help. When hubby and I found ourselves alone and trying to cope we went through some very dark times and desperate times. Try as we might, we found that its not easy to go it alone and fight this never ending war; and impossible to fight it alone.

We started calling anyone and everyone we could think of, randomly calling hospitals, community centers, local city council and anyone. At first it was a big blow to our pride. At first it stung. It ached. But one of the things we were determined to do was to do EVERYTHING we could. And so far we have.

The very first thing I suggest anyone going through a life long battle, challenges and unknown health future is to get help. Wherever and whenever you can find them. It may not come from the areas that you might have thought and hoped but never say no. Say “Thank you, I would really appreciate being able to call on you if I need to…” Swallow that pride. Open your heart and mind. Post a message on your Facebook page, advertise, call, ask, we may not like having to call upon strangers, but strangers who are prepared to help are better than friends that don’t have time.

Why should we do this? Because we are worth it. This is a life long thing and so we need a life of learning how and when to ask for help. If your doctors aren’t on the team, we look for new ones. If we don’t get the answers we need, we find people who can help us find some answers or at least want to help.

You see they cant and wont tell you all the things you will need and all the things it takes to manage difficult health challenges because we find that out after we get home and open the box. We find that when it comes to chronic illness, autoimmune and disability there will always be some assembly required.

Gentle hugs,

Trish

What is the goal? #pleaseshare #respect #goal #lifeskills #dignity #educate #spreadtheword

In the short time I have been blogging I have pushed myself to write sincerely and openly, even in times of pain, why? Because it is my hope to bring Autoimmune fighters out of the shadows, the online support groups and the pain of isolation so that the can feel a sense of connectedness to those that they love and the world we share with the able bodied.

So we can be appreciated for the people we are inside, regardless of our physical limitations. To rebuild our pride, dignity and confidence in ourselves as we continue to fight on.

And because I have never met a more amazing group of people, worldwide, that fight through so much pain, physical challenges, emotional challenges and ignorance just so that they can hold on to this thing we call life. I have never felt this level of empathy and admiration in my previous life because I never really understood what struggle, gratitude, peace, confidence, contentment and courage really was.

I do it in the hope that if we can all hold each other up and give each other the dignity and respect we deserve, we CAN educate, advocate and face the world with our heads held high.

That is the ONLY reasons I do it, and I will do it for as long as I physically can.

Gentle hugs,

Trish

The sliding scale #donthate #keeploving #respect #support #caring #community

I read some posts recently from various different ‘support sites’:

I have to say that it is so strange how nobody seems to appreciate that Autoimmune diseases, and the extent to which they affect us can be sliding scale and has lots of different levels in-between. We all want to be at the ‘high functioning end’ (or better still, no symptoms/illness at all), but it’s just not true for all of us and while some of us are able to work, there are also many who are bedridden and suffering deeply… And no its not because they were not positive, careful, motivated or eating right. There really are so many different reasons and factors. The thing that saddens me is that sense of rejection that can be felt by those who are highly affected by those who are high functioning. It hurts and it feels like the worst betrayal because it comes from your fellow fighters 😥 Please don’t hate. Support.

Gentle hugs,

Trish

Chronically Chic is growing!! #beauty #chich #expert #chronic #stylish #dignity #fun

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Introducing our new guest expert!

Oh my gosh another milestone for Chronically Chic! I cant believe how lucky we have been with the wonderful people who have come along to add their talents for our wonderful followers. Our latest ‘expert advice is Nel. She is university qualified health care professional who also happens to be a qualified beautician and teacher. As well as all that she is the most gifted and talented person that I have been lucky to meet in my journey with skin issues, allergies and autoimmune challenges. She is going to be post tips and ideas from time to time and will also be available for you to contact personally from her own site with any questions you would like to ask her directly. I have learned so much about managing some of my challenges from her and she has bought so much fun and dignity to my life.
Thank you so much for joining us Nel. I know our followers and readers will be benefit too!

She is trained in all areas of beauty and skin care.

https://www.facebook.com/NailsByNel?fref=ts

When positivity goes bad! #Lifeskills #Realism #respect #truth #kindness

When I was younger there was no internet and therefore as much as I might have missed out on the fun of being able to ‘Google’ , ‘Facebook’, ‘you tube’ etc, I was also not exposed to a lot of other minutia of everyday life. Now we are bombarded with constant scrolls of celebrity movements, cats and other cute animals, diets and inspirational slogans which I am not convinced is helpful at all.

Prior to the advent of the internet and the proliferation of technology, we had to learn things for ourselves and find our own meaning in things. You were allowed to form your own opinions, and allowed to change them when you felt it was appropriate. Am I suggesting that technology is bad? Absolutely not! I AM suggesting that it is being misused and relied upon to do the thinking for us.

I LOVE technology. I worked in I.T. for over 20 years. I am just not convinced that constant messages of celebrity, diets, commercials and what I call ‘positivity porn’ is a proper use of its potential. Positivity porn is a well known and accepted label for all these messages of “You only get one life… Be the best there is… You aren’t good enough unless you are going hard… don’t give up… Only the weak break… You are a beautiful moth about to turn into a butterfly…” ilk. They are constantly doing the rounds and I have even seen the same one 10 times in one day from various different sources. But why are we so obsessed with them?

If we have a sick friend, why are we bombarding them with these messages? Is it possible that we think that it might help ‘cure them’ of their illness? If these constant messages where indeed helpful then why is there so much pain, suffering, depression, suicide, financial hardship, fighting, destruction, isolation in the world? Surely all these positive pictures of sunrises would have ‘cured’ all that by now! It my personal opinion that it doesn’t BECAUSE of the constant bombardment, it has become like so much refuse and human waste left lying on the shore. No longer having meaning or use any more.

I remember a time, after a particularly bad break up, my mother sat with me while I tried to process things and make sense of it all. The silence was deafening. I said to her that I would like to go to work even though I hadn’t slept at all for days, and she just said. “I am proud of you kid. You are doing the best you can, and that is all you can do.” She got up and made a cup of tea. As she passed by she put her hand on my shoulder and that was enough for me to get on with the day ahead. Less was more. Nothing can replace the human contact and sincerity when we need it the most. Not even a pretty picture of a moth or a kitten. We are human and we will always need empathy. We will always need love. We will always need connection to our loved ones and ourselves. No amount of positivity porn will replace this very human of needs.

The other thing I have a visceral reaction to is they way it subliminally perpetuates patient blaming i.e. You are sick because of your negative thinking, You could be better if your thinking was better, read this little slogan and stop thinking about your needs, you have no right to negative feelings because this slogan says so… Don’t get me wrong, I think a well timed and needed word of encouragement and understanding is vital for anyone, no matter what they are going through, but denial and downplaying someone in their moment of need is incredibly useless and harmful. This is purely my opinion.

Life is meant to come with a vast array of emotions. Some are painful, harsh, uncomfortable and difficult. We aren’t meant to ONLY feel the good ones and run around high on positivity and inspiration all the time. If we don’t allow ourselves to go through and experience all the stages of grief and all the range of emotions we become half a human experience. Almost unreal. Although I don’t think its healthy to dwell in any particular emotion for long (i.e. sadness and futility) neither is dwelling in perpetual highs of emotion. It can be just as harmful. The trick to life has always been, and in my opinion, always will be balance.

Feel the pain but don’t dwell in it. Feel loss but don’t live there. Feel happy when you can. Remember some things in life are hard and some things are breathtakingly beautiful. Some people will break your heart and some people (sometimes the people you least expect) will show up and refill our hearts with the love we thought we lost. That’s what has been happening for centuries before all this positivity porn because that really is the true human experience.

I can remember reading years ago something that stuck with me and resonated “If you always HAVE to be happy, you will always be disappointed”

Gentle hugs,

Trish

Can I tell you something? #goviral #whatyoushouldknow #survivng #respect #thankyou #chronictruth

Can I tell you somethings that are hard to say so I wrote it down?

1. Doctors / Specialists act like they know how we are feeling better than we do.

2. People who have no idea what our illness is or what we are going through, will give advice about what we should be doing.

3. Put 10 Autoimmune people in a room with the same disease and you will have 10 different people in a room with different symptoms.

4. When someone says “I don’t know how you manage…” we don’t know either!

5. Just when you think you can’t take anymore… you do

6. We always forget that we are not going through these things alone, it affects everyone in the family / relationship and so everyone needs consideration.

7. Able bodied people think that putting in a handrail makes a place ‘disability friendly’.  It isn’t!

8. People forget that doing ‘something fun’ is challenging and takes a lot out of us. There is a price to pay for even the stuff I enjoy doing. Like blogging! 🙂

9. Most of our money goes on medicine so we sometimes don’t buy what we need for reasons like… little things like bills! It’s exactly the same time my doctor will ask me “how are you going with that med?” and I tell them something like “Not sure… too early yet”. I have draws of scripts that I cant buy sometimes!

10.  Only reasonably healthy people can manage waiting room offices. Most of us cant because of pain and various other reasons. So the options are usually stay at home and put up with it or drive to ER. I stay at home because I hate sitting in ER’s. Hence 10 yrs Autoimmune = 1 ER visit.

11. Most patients with Autoimmune diseases know more about the disease than the specialists. We have to. We have no choice. We can’t afford to wait for a doctor to learn how to best manage our symptoms!

12. We are so used to feeling bad and in pain that we don’t know whether we are actually dying or its just another normal day. I have resigned myself to dying at home because I don’t know what is considered ‘extreme pain’ anymore. That’s situation normal to me. And at least the view is better.

13. It takes a lot of courage to be in a wheelchair, scooter, zimmer frame, diaper, so please remember that when you see us in one.

14. 99% of the symptoms you can get with Autoimmune are either extremely embarrassing, strange or extremely painful so sometimes we might not tell anyone what’s happening.

15. It takes me 2 – 3 hours each morning to get ready. Yes, you read that correctly. 2 – 3 hours. Most of that is preparing myself for moving enough to shower and dress. So never ask a Severe Autoimmune to be somewhere before 9 am; Ever.

16. There is a whole spectrum of severity with Autoimmune diseases from ‘high functioning’ to ‘severe / debilitating’, don’t assume that because you ‘know someone with MS, RA, Addisons or Hashimoto’s that you know what everyone is like. We are all different. Its like the Autism scale or the Asthma scale.

17. There really is no cure yet… I am not making that up! – Regardless of what your naturopath, or anyone else, might have told you. But as soon as they find it, we are going to be lining up for it!!!! There are over 28 million in America alone.

18. No, I haven’t given up on life… far from it… I work harder to have one!

19. Most of us under use pain meds because we are scared of becoming addicted… not the other way around. Besides pain meds make up less the 10% of my overall daily medications… the rest are meds to try and stop the spread and disease activity.

20. Being in pain (and missing out on the normal everyday life events) can and will make me depressed from time to time. Not the other way around. Just because I don’t show you my tears, doesn’t mean that I don’t cry everyday. If we didn’t cry it would just keep building up. Sometimes a good cry is the best way of wiping the slate and getting ready for the next day.

21. Yep. Sometimes we can get jealous of those who are ‘high functioning’ – doesn’t mean we are bad people or I would want to take away their level of health. Yep. Sometimes I am jealous of all the stuff that able bodied people can do (and take for granted), I just wont ever tell you.

22. Just because our lives changed completely, doesn’t mean our personalities did. If we were smart, funny, loving, caring, impatient, bossy, quiet, introverted, intellectual etc before we got sick, chances are we still are.

Gentle hugs,

Trish

And the winner is…. #competitiveness #winning #happiness #lifeskills #dignity #respect

I guess if I am completely honest in Western society competitiveness is everywhere and can take on many different forms. From the moment we are born, if we have siblings or relatives we are subject to some form of competitiveness and rivalry, even subtly. As we grow up and start going to school, we are encouraged to compete with our peers for achievements and recognition. We compete for academic achievements, Sporting achievements, competition for jobs and partners, and the list goes on. It slowly but surely becomes a way of life. Am I successful enough? Am I smart enough? Am I good enough? Am I wealthy enough? Do I have the most attractive car? The most attractive mate? and so on and so forth. Sometimes competitiveness can destroy families, destroy relationships and destroy personalities; and that’s where we see it at it’s true ugly self.

I am sure that I was no exception in the past and have wanted someone’s job and wanted someone’s lifestyle but nothing could prepare me for the experience’s that were to come. Having already lost quite a few friendships and family to the green eyed monster, I decided at an earlier age that the best way to win was to not compete. Step off the round-a-bout  and let people who enjoy and thrive on such behavior go their own way. I decided some years ago that the only person I wanted to be better than was the person I was yesterday. Always learning and always trying to do my best. I guess the mistake I made years ago is thinking that it was going to be easy and it was going to be a one way direction heading up; I was wrong.

Since starting this long and painful journey with illness and disability, I was shocked when I realized that competitiveness had followed me to this difficult place. There was still acts and examples of competitiveness from the able bodied world when they saw that I was struggling. I would be being reminded of some peoples lumbago, told how some people cured themselves with will power and various potions, I was reminded that there was nothing ‘special’ in my suffering or ‘at least it’s not cancer’, I have been dismissed as being attention seeking and I my unpredictable diseases has suggested to others that my character is unpredictable and lacking also. Some people, well some people just don’t even ask how you how you are doing, seemingly not able to share the attention even for a mere moment and preferring to keep all conversations focused firmly around them.

I turned to online support groups and was shocked and horrified to discover that competitiveness had permeated into these so called ‘safe havens’. I have even had to leave some groups because I felt that it had become over run by members convinced that somehow suffering was a competition and that their circumstances (whatever they were) was worse, more important, more difficult than anyone else. I am the first to admit that amongst the Autoimmune, disabled and chronically ill there is a whole spectrum of challenges. We are all so different in our circumstances. There are indeed some ‘high functioning’ people as well as those who maybe at the more severe level, but is it contest? I personally don’t think so. These days I try to look for sites, situations, people, relationships and groups where no one is ‘racing’ you to an imaginary finish line. There will always be people who are smarter, prettier, wealthier, taller, more famous, more artistic, healthier, more ‘something’ than you. So what? It doesn’t make your journey any less valuable and meaningful. The only person I want to try and improve on is myself, whilst still accepting that I will never be perfect, because there really is no such thing.

Today when I find myself around people who start competing, or if I find myself in conversations which have a competitive overtone or I feel someone attempting to drain my energy and strength with their need for more attention or more recognition I will simply smile, stare and walk away (wheel away). It is my way of saying ‘I respect myself and my journey too much to compare it to yours’. I encourage you too to think about how you want to spend your energies and efforts in this life. On your death bed will you want to know you had a better life than someone else, or will you take comfort in knowing that you had the best life you could give yourself? I no longer need the validation from others to know that the life I have and the choices I make are relevant to me and those who share my life. Once I let this thinking in and embraced it I can truly empathise with others, I can truly appreciate others and I can honestly celebrate the milestones of both myself and other people without giving up any of my own power or dignity.

And the winner is…. all of us.

Gentle hugs,

Trish