Being chronically Ill is something I don’t talk about much anymore, for many reasons.
Some of those reasons is that this subject tends to be the only one that people know how to talk to me about, I want people to see me other than “the sick girl”. It is shocking but I do have thoughts and opinions on many other things. I have also decided that being ill doesn’t define my personality.
On the other hand, my mind is managing my symptoms and working extra hard to ignore this part of me (which does take up a lot of thoughts and mental energy) that I just can’t take the idea of talking about it anymore… at the same time there are moments where I need someone that truly understands and to talk to about it.
I need to know that that one person I talk to about it, isn’t burdened any further by all the issues and pain and symptoms I have going on because I already feel like a burden.
BUT I WRITE THIS – because I believe it’s helpful to those that are struggling:
In the period of time where you are still trying to figure out what chronic illness you have that you will want to give up. You are guaranteed to have at least one doctor tell you it’s all in your head to make up for the fact that they don’t know how to investigate your symptoms properly. I want to say sorry for that. It has only been after a lifetime of health issues that I can look back and say that those doctors get away with it because they have education certificates that tell people they are qualified, but they are obviously lacking in what they should know. They should know that you either need help from a different specialist or the tests they should be running to discover the truth. It’s not you, it’s them. I can tell you a list of the insanely stupid things that doctors have said to me because THEY were incompetent, but ultimately – if they can’t work out the puzzle of your symptoms – it’s somehow your fault. Wrong. I’m sorry if you have experienced this – please don’t let it stop you from going to doctors – there are truly some great ones out there. Don’t let the ones who have to big of an ego to admit that they don’t know something affect you (easier said than done I know).
There are times you will wonder what you contribute to others, why you are here when you are in pain and feel like you have nothing to give. You do. Even if it’s just empathy for others, or writing a card to someone who’s ill, or sending a caring text. You have a gift, even if it’s hard for you to see at the moment because you are overwhelmed with pain, discomfort, and exhaustion.
I want to express encouragement for you to keep going. Whether you know what is wrong or not, my doctors are always telling me of a new technologies everyday that can help people who could not be helped before. I have had challenges with my health since I can remember, with so many different health systems. I really could fill up my Facebook friends with my specialists (I see them more often than my actual friends). I have to constantly see them, and have check ups and have them keep an eye on things until my next surgery. There was a period of time though where I was told I didn’t fit in “any category” of illness. Some doctors (the bad ones) told me it was in my head. Some doctors (the good ones) knew it was “something” but an awesome doctor will admit it is beyond them. The good doctors would say “I feel like you have something, that will be discovered soon, and we can all figure out what this is. I didn’t realize that at that exact moment was when my illness was being discovered – but had yet to be widely recognized or published until 3 years later.
I have things that did not show up on one type of scan but showed up on another…. There have been mistakes but ultimately there have been wins. I have an amazing support team of doctors. I have had such rare conditions that I know I’ve been written up somewhere in some medical journal. So I’ve had my fair share of doctors who shrugged their shoulders. This is discouraging but I will say I would much rather a doctor say “I believe you but I don’t know what it is” than a doctor who would like to pretend I’m imagining symptoms (even with abnormal test results).
I also look back and realized I tried some kooky things all because I had hope that I could get fixed and I had no answers. I get frustrated with people who offer crazy things, they are scam artists at best, and they feed on people who are desperate for help. Someday you may shake your head or laugh at how silly it all was.
I am sorry for all the ‘friends’ in your life who don’t understand and make stupid and judgmental comments. These people will either no longer be in your life or you will learn to ignore them. I have found that the majority will finally understand (after going through their own health trial) how much they were ignorant about. That’s when you can turn around and be the friend to them that they never were to you. It happens…
Hang in there. You are not alone. There is much I don’t like about social media but a beautiful thing about it is that there is easier access to support groups for people who can’t get out of bed that day (that week, month or year). There are many blogs I have found on chronic illness… (if you are reading this and you blog about having a chronic illness, please place a link in the comments section) that I find to be comforting on those difficult days.
My life is better in the sense that I now have more good days than bad (that’s how I measure it), and hence why I don’t discuss it as much but I know quite a few people going through their own health struggles lately so I felt like it was time for me to write this and just say sorry. It isn’t fair, I know that if you were well you would be seizing the day and doing amazing things. Sometimes the endurance you have to keep going is what inspires others – and if you don’t even feel strong enough to put on a brave face, and all you can do is feel miserable, I hope you have some company to feel miserable with, a person or a pet, or just to vent in a chronic illness group.
So I’m sure you know from experience by now that life isn’t easy. The Scottish author Ian Maclaren (aka Rev John Watson), is known for his words “Be kind, for everyone you meet is fighting a hard battle”.
Some of us have been through difficult trauma and life-altering circumstances. We need to own these feelings that are a result of that trauma. We need to express them somehow. Holding it in makes it worse. As Maya Angelou says “there is no greater agony than bearing an untold story inside you”. We sometimes are under the impression we must convey that we are “fine” all the time. Why? Because not being fine makes others uncomfortable and how dare we make others feel comfortable with our truth, and our feelings right? So we bottle in those emotions and feelings in. Not to be extreme but harboring those emotions can lead to an early death.
If you have trouble opening up… writing your feelings in a journal helps to process them. Either way, in order get through the effects of trauma – we HAVE TO, we MUST talk about our feelings and own them and not feel guilty about them.
The problem is, I’ve seen people respond to these situations by treating the victim, like a victim for the REST OF THEIR LIVES. Treating people (or even yourself) as a victim robs people of the feeling of having control over their lives. Yes, something out of your control happened to you, but you actually have a choice to not let this moment of trauma define and control you. However I want to be clear, people cannot get through trauma until they are at a point where they have owned their feelings about it first. Otherwise it never goes away.
Being a victim should be temporary. The state of having a victim mentality can last forever. The victim becomes prisoner to a traumatic event and victim mentality leads to worse situations down the road which cause a greater ripple effect of others getting hurt.
If you are a parent – it is VITAL that you empathize with your child over something that is unfair, or painful that has happened to them, but it is NECESSARY to give them tools to help work through those emotions, and help them be free of the pain by encouraging resilience. If this means that you too need to learn how to get out of your own victimhood, then getting help for yourself first may be the first step in being a better parent. If you yourself do not have the tools to work through your own emotions and demonstrate resilience – there is no way you can help your own children in this area.
There is a lot more to this, more than can be written in a blog but a lot of hurt that is being done in the world are people who not only have been victims, but have been encouraged to see themselves as victims or have not received the support needed to show them that they can learn to move on and be resilient.
Hope your week has been amazing!
For more resources on this subject click here.
We all have those days.. especially as a parent where we feel like we failed. Today was a particularly hard day for me being that I had both of my children have difficult days as well as a husband who struggled with some challenges at work. However there are the mothers that struggle ‘a tad’ more. Those are the mothers with children who require that extra work. I have a child that may be on the sensory scale when it comes to challenges (although some have mistaken him for being autistic) but he is not on the Autism spectrum. This week – memorial day week – reminds me of the mothers of Autistic children. Why?
I was 12 years old when my nephew was born into this world. I was closer to him in age than I was with some of my siblings. May 31st is my nephew’s birthday. I remember feeling so overwhelmed with happiness when he was born as he was my parents first grandchild and I was the youngest. I thought of him as that younger brother I always wanted. Then the confusion set in when I came home from school to be told that he was “different”. We later found out he suffered from a brain hemorrhage at birth. Despite passing all sorts of milestones – I remember him losing a ‘normal voice’ and his giggling personality to autism. I don’t talk about it because I feel guilty. I feel like I have no right to feel upset or angry or sad about what has happened to him as he is my sister’s child, not mine. She has to be the one that deals with the most on all of this. I may have lived with him when he was little but she has spent every day living with him and the unpredictablity, discouragement and appreciating the little things.
I am still surprised when I come across people who think “Autism doesn’t exist” or “the child wasn’t disciplined enough”. I know from first hand experience this is not the case.
There are bad statistics for mothers who deal with severe autistic children. They have to do with the success of their marriage and their health just to name a couple. This makes me concerned for my sister, but makes me think of the’ general Autistic community’ and the EXTRA stresses they carry each day.
I know as an aunt there are times I treasure. I know my nephew doesn’t like to be touched much but I have sat in silence with him and he has laid his head on my shoulder. That day makes me happy.
The day where I hadn’t seen him in years and wasn’t sure if he remembered me – and I walked into his room only to have him tell me to “come here sweetheart” in the most excited voice as he hugged me.
These moments I can think of and remember knowing they are not the norm – they are the exception. I remember when I was younger and my nephew lost it when I was in a van with him. He had to be warned the indicator was going to come on to turn and even when he was warned he still protested the sound of the clicking of the van.
It also makes me wonder about the people who lose it with road rage when someone doesn’t use their indicator – is there a possibility that a driver is weighing up whether to upset their autistic passenger with the noise of the indicator or someone outside the vehicle with road rage.
Mothers of autistic children know there are so many more things they have to pre-plan and worry about with such unpredictability of knowing that no matter how much you plan there is still something small that may cause a national-sized meltdown.
So with this I just wanted to write something small – and not even close to measurable in honoring those that deal with this stress everyday. This is the weekend that I think of you, and consider the stresses that are on your shoulders, and hope and pray that there is someone near and dear to you that can help relieve some stress.
I hope you have a chance to take some time for yourself this week. Take care of yourself because there is so much on you. You aren’t alone.
This is one of my favorite sayings to keep me going in a time of stress: “The Story isn’t over”. A lot of stress that we give ourselves or feel during difficult times is because we cannot see the light at the end of the tunnel. All we can see is the hard lemons that life is throwing at your face and there is not enough sugar in the world to make it sweet enough for lemonade.
There are times in our lives when stress piles on, or as the saying goes “when it rains, it pours”. There are too many things to process, too much pain to deal with or just a constant battle that we don’t remember being without.
One of my “raining and pouring” is that I was born with internal health issues that should have been fixed with one surgery here. Well, one surgery turns into more and then more and well… you get it. I have been advised that as much as I thought “okay, this is the last ‘big health’ thing I need to deal with my doctor explained that there will probably be more in the future. I am gearing up mentally for having procedures for the rest of my life in order to be here.
This is just one of many difficulties that affect my life. I know people who go through much more or just different challenges – but sometimes it makes it difficult to see how you are ever going to get through the tunnel.
This is where it’s a good time to look back (not something that is usually recommended) and think about something difficult, and how it felt overwhelming at the time but you got through it. Had we known that there was light at the end of that tunnel maybe it wouldn’t have been so weighty at the time.
Sometimes the pain is so great in that moment and all you can say is “I survived that” but the point is: YOU SURVIVED. Sometimes our burdens seem so overwhelming but the story doesn’t end there and it is good to remember that in a few weeks, months, years from now you can look back and say “I survived that”.
Whatever challenges, pain, grief, or difficulty you are going through – it’s survivable by you and/or others. The story isn’t over yet…
After some pretty stressful times (Physically and emotionally) people are asking me how I am doing and I keep responding “fine”. Or I say “yeah, dealing with stuff but I’ll be okay”. This is the only way I know how to respond to the majority of people who surround me with their own version of support.
Honestly I have been dealing with a lot of crappy left over emotions of some difficult years (and possibly more to come). I’m usually very social but lately I have needed to be alone. I just don’t have the energy required to hold up conversations like I normally do.
If I am in a conversation I try to keep conversations on topics that have nothing to do with me.
I did worry one person around me when they couldn’t understand some of my behavior. I explained I haven’t slept well (part of that has to do with the schedule that the hospital keeps you in – constantly waking you in the middle of the night). Not sleeping well doesn’t help you process your emotions clearly or help you recover your energy easily.
The thing is, I can’t escape going through these feelings. I can try to avoid them but eventually I have to face them and they aren’t fun. There are a lot of traumatic thoughts, and feelings that I need to own. I have expressed them like they are no big deal “Oh yeah sure, the doctor told me my chances weren’t good for survival and warned me several times that they may not be able to do anything for me would not have not long to live”.
I almost laugh at myself internally when I say it so casually when inside I know that I have avoided facing the aftermath of surviving that.
I went through a period of time beforehand when I tried convincing myself that I was totally okay with not surviving because ‘”I’m sure everyone will be able to step in for my children and husband and the community will come together and it will all be okay”. I know deep down it is not okay.
Our whole family and myself included are more than thrilled that I survived and am alive but there will be a time to really digest what really happened and the emotional toll that all those words and feelings took on me.
Yes I can focus on the positive – I do most days – but that doesn’t erase the burden of the stress that was placed before this.
Those feelings aren’t pretty – I can’t make them sound “good”, but they are feelings I just need to go through so I can focus on what’s next.
When I was younger and decided on majoring in Journalism because I had the idea that the only goal in life is revealing the truth. I wanted to uncover corruption and provide justice for the people in a way that the law couldn’t. I wanted to fight for the person who had no voice. Of course, when we are young, our ideals a faulty as they are untainted with real life.
In one of my classes, Media Ethics, I became aware of a real life situation that distressed me. A woman stood up and talked about how her brother had gone through an extremely traumatizing incident (through respect I will not give the details of the exact story). She talked about the mental affects it had on her as well as her family, friends, and particularly her brother. Immediately after this trauma, the media was after an interview. They tried many tricks to be “the first” to get the story. These tricks caused more stress on the family who went through the entire ordeal. People wanted to know EVERYTHING and ALL things about this particular event in which only her brother could talk about and yet – he couldn’t. He was extremely physically and emotionally he was unable to speak about it. Yet the problem was – the media needed a story and they couldn’t get a hold of the one person they needed for the story – so they did something else. They brought all sorts of “survival experts” and psychologists to interview. As a result, the first interviews about this story were by “experts” who never went through the event themselves who discussed how this man had to have made up the entire situation.
Now can you imagine the mental affects there has to be on someone who not only went through a physically and emotionally traumatizing event (that lasted for days) but because you weren’t ready to speak about it yet, there are now people talking about the worst experience of your life as a made up story on national television. Read More
It took me going back to university working toward my education degree that helped me understand how my thoughts was failing me.
I believe I was born with a growth mindset (if you haven’t already I recommend Mindset by Carol Dweck to better understand growth vs Fixed mindset), however it took a lot of “you can’t do that” and “This is the way you should do things” that I grew into a fixed mindset.
It wasn’t until I had to go back to school and understanding my fear of failing that I learned how fixed my mindset was. I forced myself to read every piece of feedback on my assignments – not just the positive, but especially the negative and see what I could learn from it. I pushed myself into learning not to become discouraged from setbacks but to figure out how to grow from them.
I have learned that a degree isn’t going to answer my dreams in what I want to achieve in life (although I will keep up with it for that piece of paper). I can see myself becoming frustrated with the restraints of the education sector after a few years of teaching.
I am naturally discouraged along this journey because my generation has grown up in what I have dubbed (unless someone said it before me) “a microwave society”. We are used to having what we want the instant that we want it and I’m not going to go into a rant about how spoiled our generation is, but how much easier it is to become discouraged when things down’t work out for us right away. We expect success – and quickly.
One of the main reasons people site for not losing weight is that we don’t lose weight “quick enough” in our minds. Our expectations are high, and fast, just like internet connections. However one great opportunity with this era is that the we live in a world with a lot more avenues to promote our passion. It doesn’t matter if you live in the middle of nowhere – if you have the internet, you have an opportunity.
So what to do? Is your goal to get fit? Is it growing your online business? Is it a degree?
With still in recovery from my procedure and trying to gain strength again, my routine might be a bit light compared to others but I recommend a passion routine.
Find real people and/or find an online group about your passion – this includes finding a mentor (if you can). You can find some websites (or blogs) that help direct you with your ideas and goals. Go to your library and ask the librarian what resources that the library holds (as well as the community events) that could assist you.
Lastly, have some books on the subject and read a few pages each day (depending on how much time you have – but commit to a certain amount of pages).
I personally have a book on current events that I like to read to get my mind “warmed up” then I read 10 minutes of each book (I currently have two) on the subject I am passionate about, (and add on a lot of online research). After I put a lot of my effort into my goals for that day (each day working towards what I want to achieve) I then have a relaxing book that has nothing to do with anything else – but to be able to decompress after intense work. This is something that universities recommend when doing copious amounts of research. You need a book that wont make you think too hard to help the mind feel like it’s had a “break” and a “relax” so you don’t get burnt out.
But the very first step you must take – is changing your mindset!
If you have the chance I would love if you left your recommendations of books on the subjects you are keeping your passion with in the comments section.
I may be the last person on the planet to hear of the 5 second rule… Have you heard of it. Thankfully a random search (that had nothing to do with what I was researching) brought up this Mel Robbin’s Video.
I was thinking a lot about how to organize myself to organize myself (yes… that wasn’t a grammar mistake… I really was trying to organize my organization method).
I have goals – I need a proper desk for my laptop to focus more on my writing. I want to spend at least 10 minutes a day to read or study up on my goals – to help motivate me and stay on track. I was wanting to gain strength back from my recent procedure – it’s painful and I have procrastinated. I have been wanting to finish a garden project I started 5 years ago. I have many clothes to drop off at Goodwill. Do I need to go on?
I have kept hitting the snooze button. Occasionally I have had a wave of motivation and I couldn’t figure out the key to why I could suddenly be motivated to so something and other times I didn’t. What I did know was that I kept talking myself out of things. After watching Mel Robbin’s video it hit me that this hesitation has been my biggest enemy to achieving my goals and changing bad habits, and that I need to adopt the 5 second rule.
Backed by science – if we stop thinking/hesitating about what we need to do and just countdown to doing it we’ll actually be working on our goals.
Also, I may be the last person to hear of Mel Robbins but I thought I would mention her, in case I’m not the last person who has heard of her.
Do what you need to do – stop thinking about it – and count down out loud to your execution of what you are thinking about doing.
Find Mel Robbin’s books here.
Happy Friday (in Australia).
P.S. After you have stopped reading this I hope you have counted down:
5, 4, 3, 2, 1, GO!
At summer camps growing up, I grew the love of rock climbing and as a result when I turned 18, I got certified to become a rock climbing instructor. One of the first things they tell you is that you wont get killed in the beginning. You are too scared when you first start out rock climbing to be killed – so you double, and triple check your harness and safety equipment before climbing. I was told, the beginners are usually fine, and nothing happens to them, it’s after a few years, when you are great at your job, you become too comfortable with this potentially dangerous sport that you take risks or forget to check the equipment, and you make deadly mistakes. It’s the long-time professionals that get killed.
This is a principle that can be applied in different ways.
Most car accidents happen within 3km (1.4 miles) from home. Why? Because we are so familiar and comfortable with driving that last little bit home that we don’t pay the attention needed for the road.
There are countless stories of people/children drowning in a pool when there are many others around – because everyone assumes someone is watching. They trust a little too much that the swimming abilities of those in the pool are good enough and they don’t need to keep watch.
I know I have ruined a relationship by becoming too comfortable, thinking I could say or do whatever, not realizing I had overstepped my boundaries and caused offence.
Today I was too comfortable down a street I knew well that I believe has been assigned the wrong speed limit. I have never seen policemen there, and it’s the one street I speed down consistently – I abide by the law with every other part of my journey. Today – I was caught speeding down this street. Sure, it didn’t kill me but I definitely don’t have the money to pay the ticket.
I believe that unless you are on vacation and you are 100% safe (there are plenty of horrible vacation stories full of accidents or trusting the wrong people), it can pay off to stay uncomfortable.
The goal shouldn’t be “to be comfortable” the goal should be to be at peace with the uncomfortable. Being uncomfortable, keeps you safe.
I usually post “Cool Finds Wednesday” where I post cool new items out there for sale.
Today I struggled doing this as today is the day we observe Anzac Day. As a friend put it “we honor those that gave up their future so we could have a future”.
Most businesses close today. There is no buying or selling and so I do not feel comfortable “selling” on this blog.
This day is taken more seriously than any other day in Australia. My children had their own “afternoon service” at school yesterday and they wore red poppies – to remember those that gave their lives. They listen to “The Last Post” while having a minute of silence. Schools may not choose to talk about Easter, or Christmas, but remembering the Anzacs is a topic of priority this time of year.
This morning – many people get up in the dark to be there at the dawn service. Children and adults lay wreaths to honor the fallen soldiers.
I am honored to say that my Grandfather, and two of my uncles have served in the Australian Army. My Grandfather had a hard time speaking of it, and so I do not know much about what he went through.
I cannot imagine what it would have taken to be young and willingly go into a situation that would likely mean death but I do appreciate their sacrifice.
The only thing I do request is that if you don’t have an ANZAC pin already that you purchase one to show your respect and honor for those that have gave their lives.
I will also post and excerpt”The Fallen” poem and a ANZAC Biscuit recipe that was sent by the wives of the soldiers that is famously made around this time of year:
“Greater love has no man than this, to lay one’s life for one’s friends”