This week I am going to introduce you to my Mum, Liz, to share a bit about herself and her journey from when I was diagnosed with CF. I adore my Mum and at the risk of sounding like a total suck up I am so happy that she is keen to share her story because Mum and I are a team. We go together like birds of a feather! Here she is….

A little bit about Lizzie….

My name is Liz, and I am a very proud mother of two beautiful daughters, Lily 28 years and Maren 27 years. I also have two absolutely beautiful grandchildren, Griffin who is nearly 6 and Sophie Lily just two. I am married to a lovely man Robert, who is step-father to Lily and Maren and is such a wonderful support to our family, we couldn’t imagine life without him.

A little while ago now I mentioned to Lily that she hadn’t written anything on her blog for awhile to which she replied “Mum I don’t always want to think about CF!!!!!” I realized she had probably written as much as she needed to at that time and even if she didn’t write another article the articles she had written were honest, relevant and timeless in her sharing of life with chronic illness.

For quite awhile I have wanted to write about my experience as a mother of a child with CF , but I have found it remarkably difficult to open the door to some of those memories.

How did you find out Lily had Cystic Fibrosis…..?

Lily was born on a hot summers day in Sydney, Australia. A normal pregnancy and birth and I was in absolute seventh heaven. She was beautiful with white wispy hair that defied gravity and the bluest eyes. Her father and I were so proud and happy with our little daughter… life was wonderful. Lily had just started smiling at six weeks when the hospital rang and asked me to come back for another heel prick test (a standard procedure given to newborns to detect certain illness). I wasn’t really concerned because she seemed to be thriving and saw this as an opportunity to show off my beautiful baby. All my family were in Brisbane and I didn’t really know many people in Sydney. So I dressed her in her best dress and off we went. I was absolutely devastated when the pediatrician started talking about testing Lily for this disease called CF, and explaining how serious this was and that if she had it they didn’t know how long she would live … perhaps two years but not much longer that 18 years, the life expectancy at that time. My life would never be the same again. I left the doctors office and walked in a daze for hours…..I realize there is no easy way to tell a parent such terrible news….however I think it was such a shame Lily’s father had not been asked to join me for that appointment as I desperately needed to be supported.

What was your journey after diagnosis?

Having a baby is such a transforming experience I felt like I was a different person, a better person. I couldn’t believe how much I loved this little baby and was feeling very happy. However when Lily was diagnosed I felt intense grief, the tears flowed for months and if I wasn’t crying I felt paralysed with fear and panicky. Though my husband was very loving and supportive I felt so alone, guilty and basically terrified.

But if the lights had gone out for me it was Lily who gradually turned them back on again. As the months went by her little personality and obvious joy for life asserted itself and her father and I were irresistibly taken along for the ride by this little force of nature.

What would you like to say to a parent whose child has just been diagnosed with CF…..

Be kind to yourself. I look back on the young woman/mother I was with such compassion and love. This is the mother whose first reaction was to think “But she’s in her best dress??” I still don’t know what to say about recalling that time, it is very personal, except that with the distance of almost thirty years I see a young mother who really was trying her very best to care for her child, her marriage and herself. I would just like to take that young woman in my arms and give her such a big hug and reassure her that this journey will deepen her sense of life and love in ways she could never have imagined.

The physical care, knowledge and understanding of the treatment relating to CF is very daunting to begin with … but given time, routines are established which will become habit. At this point parents become quite expert at reading their child’s comfort levels and well being. You’re a team. I know over the years I have had to be Lily’s advocate, often I felt very inadequate. In the hospital setting there will be many different people, positions and personalities which can be very intimidating however a parent has the right to have their questions, queries or concerns answered. You have that right. There will usually be someone you feel comfortable talking to perhaps a social worker or CF Co-ordinator, nurse or doctor. Lily has taught me so much in this area, she is a force to be reckoned with as many CF’s are who have been hospitalised for long periods. They know themselves better than many of the staff who are constantly changing around them. Lily remains calm yet speaks her mind. I am often in awe of her in this regard. She is courageous and brave.

I am so grateful for the care Lily has received, we often say how lucky we are that we live in Australia where the best possible care is given to patients regardless of their income. I am especially grateful for nurses who really are like the closest thing to family while in hospital, especially for the little ones.

So there you go, straight from Mum’s fingers! I hope you have enjoyed this post, there is some more from Mum to come so stay tuned. And if you have any questions for either myself or my lovely Mum than please feel free to email us or leave a comment below and we will reply quick as a flash!

Lx.

I have been working on some new posts from my hospital bed and at the moment all the signs are pointing to doing some stuff on the shock of diagnosis. I received an email this week from a new Mum who had recently had her beautiful 4 week old baby diagnosed with CF. As you can imagine, the heartbreak can be overwhelming.

I had a good chat with my own Mum about my diagnosis and how she got through life after hearing those words. Mum has started recording her experiences so that we can do a series for Mum’s who are living through the trauma of a serious health diagnosis for their child. Obviously I have never had a child and have not gone through this experience so I am not well placed myself to be able to share my experience on that matter so I will leave that to my Mum. I am, however, well placed on having had a mother who has battled through a diagnosis and aimed to create a happy and positive child no matter what. I HONESTLY believe that a mother (and father) who guides her child to be a positive and happy person despite their problems is one of the BEST tools a mother can give her child. There is now good medical evidence that shows that a patient with a positive attitude is more equipped to better deal with their health issues than those who don’t have such an attitude. Creating a positive attitude in a child starts with the parents. So I will share with you the words that I shared with this Mum who reached out to me…..

I can only imagine how you are feeling at the moment. I am on the other side of the spectrum, I have never had to go through the sadness of having your beautiful little one being given what feels like a death sentence. It must be heartbreaking. I know the day I was given the diagnosis still haunts my Mum. You have to know that you will get used to the idea of CF, you will have some happiness again, you will be able to create beautiful memories. You will laugh again. There are a few things that you need to know now that will make a difference to both your life and the life of your little angel.

I know you are VERY angry and scared. It is totally natural. And you shouldn’t beat yourself up for feeling like that. You have a right to be angry. But you also need to understand that this is NOT your fault. This is not caused by anything you have “done”. At this time you need to just take one day at a time. When you feel angry, you need to just allow yourself to be angry for that moment. If you just give it it’s place, rather than trying to deny it and force it away then it will lose its hold on you much faster. It is the same with sadness and grief. Just be in the moment, say to yourself, “yes, I am sad right this moment but I will be OK”. Don’t beat yourself up for feeling these feelings; grief, sadness, anger, just acknowledge that you are feeling them, let them have their moment and then keep going. Do something to break the thought. Preferably something positive, something small like making a cup of tea, putting on a song that always makes your happy no matter what, etc. I know it sounds stupid but you will feel happiness again one day. This initial deep sadness and grief will ease somewhat. It is about giving grief and sadness its place while aiming for a positive outlook.

There will always be a some sadness. That is the nature of illness. But the best thing my mother could have EVER done for me is to teach me to be a positive person. It has been the best tool in my fight against CF. When you are sad remind yourself that you are going to be a positive role model for your son, you will show him how to be a positive and happy person no matter what his circumstances. That is honestly the best tool that you can give your son for the future. It takes practice and it is about changing your thought patterns and attitudes but it is TOTALLY possible. You are the best person to teach your son that life is worth living and that you can find joy and happiness in the smallest things. I know you won’t feel like it is possible at this time but it will happen.

As someone living with Chronic Illness, I know that the above information applies whether you are living with Illness yourself or whether you have a loved one or child who has just been diagnosed. It takes time to get used to your new reality but you will smile again.

Mum has written the first half of her post so I will post that very soon. There has been a bit of a delay between posts due to my being back in hospital. I am just in for a much needed tune up and am looking forward to getting out of here very soon. Until then, I am having fun doing some writing for TLWC and I am looking forward to sharing these stories and insights with you!

See you soon!

Lx.

For more information about TLWC check out the first TLWC post or the ABOUT page.

So gaps between posts have been a regular occurrence lately, I am sorry about that. I have been in and out of hospital since April which has been making it really had to get back into a routine. I am back in hospital and am trying to get better and get out of here for more than a couple of weeks at a time!! That’s the plan! I am trying to keep my chin up, there have been tears but I am trying to focus on what I have to do to get out of here for a good while. The main thing to do is to sit back, relax and let the medication due its job. That takes time and unfortunately it means I have lots of it to kill! That is when my little plan of action comes into play.

Having an unexpected emergency admission can really throw you out of whack. Having the “luxury” of a planned admission means that you are able to bring the things that can give you comfort, keep you entertained and amused. An emergency admission means that you grab the bare essentials and run. After getting through the tough spot, when you are more alert and awake that is when you start to miss your creature comforts. That is where I am tonight. I miss my photos, I miss my favourite lipbalm that got misplaced in the chaos and I miss my books and notebooks. These things may seem small, say in comparison to big things like my boyfriend but they are the things that keep my happy when I don’t have company. I do however have the internet, some fashion mags and lots of food so things are looking up!! The rest will come with my boyfriend. These things help keep me comfortable while I bide my time.

I like to have a plan of action for hospital admissions. What I want to have achieved by the time I get out of here and when I want to get out of here. I also aim to have little things to do each day. Today it was watch the afternoon old movie on Channel 9 (Guess Who’s Coming to Dinner? today, hooray!) and then have a shower and beautify. I had a yummy feed and am now planning my day tomorrow (visitors! HOORAY!). Giving yourself something to do and a rough time line, I have found, makes the day go by much quicker. For example, I will read this book for an hour and half, then I will have a shower, then I will go for a walk then I will have a nap and so on. If I am too tired to do anything I sleep, if I am awake and alert then I make myself a little routine, I am not a nazi about keeping to it but knowing that I have something coming up really does make things go quicker than sitting there watching the clock wishing time would fly by. I also try and have a project to do for the admission. Finish a study workbook. Read a certain book. Catch up on correspondence. All these little things help. I guess this plan works for any occasion when you need to kill time, not just hospital. It works for anything.

So as bored as I get, as frustrated I sometimes feel, I have my little foot stomp and then get back to entertaining myself and I guess it is one thing I have learnt to do very well. I don’t have to rely on anyone to keep me amused! I also remind myself how lucky I am to now be feeling well enough to be alert and awake, it means I am on the mend and home is coming sooner rather than later. So here’s to that!

Take care, Lily.

lily@thelifewecherish.com

For more information on this website please see my first POST or this collection of ARTICLES.

At the moment I am organising my 10 year school reunion. What a blast from the past! Getting in touch with people and going over old year books has brought the memories of school flooding back. School is something we all have to undertake, I didn’t see the point of whinging and moaning about something that I had to do regardless. And I actually enjoyed school. I guess that’s because sometimes I didn’t get the choice of whether or not I wanted to go. I HAD to go to hospital for weeks at a time. If you had to choose over school and hospital…. I urge you to choose school!!

Thinking about my reunion also has me thinking about the unique issues that living with Chronic Illness or Injury presents especially when you are also trying to navigate the teenage mine field of High School! High School can be a difficult journey for some regardless of health issues. Having Cystic Fibrosis meant that having an regular experience of school was never going to be an option. During Primary School my having CF didn’t really impact on my relationship with my peers. How do you explain something like CF to kids ranging in age from 6 to 12 years old? I had small moments where my having CF caused a problem or showed me that I was different to other kids my age but ultimately I got through Primary School without too much drama. High School was a different story. In my early years I was quietly known as the “sick girl”. I remember going into hospital in Year 8 and getting back to school and people telling me that a girl I thought was a friend was telling people I had died. I am not sure why she did it – popular opinion went with the fact that she loved attention and she got it when she pulled that trick. She left our high school not long after that. Because I had gone to school with most of the people in my since Year 2 people generally left me alone. It wasn’t brought up often. In Year 9 a new guy in school delighted in telling people that I had a forehead like that of a cancer patient, I was shocked and saddened that some people would think something like that was hilarious. I tried to laugh it off but his comment stayed with me for years, making me self conscious for a good while. By Year 10 I had worked out who were my friends and who was not. Around that time, I started getting attention from boys (it coincidentally started when my bra size went up a couple of cups!). I remember one of my friends telling me she felt sorry for me because I would never have a boyfriend because I had CF. I had gone on a couple of dates, had a few crushes and kisses before that and it had never occurred to me that I would have a problem with getting a boyfriend. And I guess I didn’t because a couple of months after that I started my first real, four year long, relationship. On the other hand, my friend never had a boyfriend while we were at school. Those sorts of things hurt me at the time but I didn’t let them define me, I moved on and lived happily through most of my teenage years.

In my final year at High School I became very ill, I missed the QCS test, I was in hospital for several weeks, needing surgery half way through the admission. By this stage my peers were not really bothered by my having CF, I wasn’t really any different to them in their eyes. However I found that even though I had been going to school with most of these kids for more than 10 years, I was still asked what exactly was CF. One of my final assignments was to do a oral presentation for my peers on a topic of my choice. I figured that is was now or never and I did a talk on Cystic Fibrosis. I explained the physical problems, my medical needs and showed them photos of hospital as well as friends that I had lost. The room was completely silent. I was the only student to actually have people ask questions at the end. The teacher had tears in her eyes and happily gave me an A!! I kicked myself that I had not done it sooner but I felt that by Year 12 my peers were ready to hear what I had to say and that they would not pity me or treat me like a freak. It taught me that it is better to be upfront and honest because once the truth is out there it almost becomes a non-issue.

I have spoken to parents of children with CF and they have asked me whether I enjoyed school and whether it would be better for their child to be home schooled. All I can say is that you have to look at every individual situation and do what is right for that child. I can understand that parents fear that sending their precious child to school could leave them open to bullying or harmful bugs but you can only protect a child so much before you are effecting a childs developement and self beliefs. If you think that they are are not strong enough for school how are they meant to believe that CF doesn’t make them different, that it doesn’t make them weak. It is about giving them a resilient and positive attitude as this will help them through more than just school.

I loved school. I loved the interaction and it made me into a person that did not use my health as an excuse not to participate in life. I was too busy to ever feel sorry for myself. I know that this is not everyones experience but it is mine. I did have hard times but I was lucky that I always had open lines of communication with my Mum and I would write my experiences into my journal which helped me process my feelings. I did the best I could with what I had and I think I came out of it pretty well. I still keep in contact with some schoolmates and they will be friends for life. I was taught to be open and honest about my situation and to not be ashamed of my disease. And that is a positive outcome for me.

All the best, Lily

lily@thelifewecherish.com

For more information on this website please see my first POST or this collection of ARTICLES.

After the positive feedback I received from my last post I have decided to focus this post on positivity. You do not need to be living with Chronic Illness to need the power of positivity in your life. Whether you are unhappy in your job, relationships or home, the power of that unhappiness can have many unwanted side effects. It slowly invades every area of your life and once it has a hold it can be really hard to shake it. Living a life with a positive outlook may come naturally to some but it can also be learnt. You can choose happiness and positivity. While low levels of life satisfaction have been linked with mortality, positive emotions have been found to lead to quicker recovery from Illness and Injury, a longer life and less chance of Disability and Chronic Illness. In people without health issues the benefits of positive emotions give people greater life satisfaction, making people happier, positive and healthy!

There are many ways to bring more positivity in your life. You can start with simple things like surrounding yourself with positive people. Negative people bring you down to their level. I learnt this the hard way. I had to remove people from my life that only wanted to dump on me when they need to but were never there when I needed help. It is a painful process but the benefits far outweigh the negatives. Another thing to do is to take 30 minutes in a day to do something that makes you feel really happy. Not just OK but so happy you get a lovely little flutter in your heart. Things I like to do are make my environment nice and comfortable. I like to make myself feel good by dressing up, putting on some make up, pampering myself. I understand that some days you don’t have time to pamper yourself so it is important to make the effort to find joy in the small things. Buy yourself an beautiful mug to have your tea or coffee in at work. Every time you use it will bring you help keep you positive. Same goes with nice pens, papers, etc. These things give you a positivity boost when you are susceptible to unhappy feelings. A couple of other things to do include:

• Make a list of things that bring unhappiness into your life and then aim to deal with each item on that list. Sometimes it may only need a minor change but you need to give yourself permission to do it. You need to consciously decide to choose a more positive life.
• List some of the joys in your life – aim for a least one a day to start with. Each week go back over the positive items for the week to reinforce the presence of positivity in your daily life.
• Use the art of mindfulness. A type of meditation, it teaches people to take pleasure in the simple things in life – for example, the smell of a nice cup of coffee, the sunshine on your neck, the smile of a stranger.
• Set yourself realistic goals and expectations for your life. And then go about achieving them. It is easier to be positive with a couple of wins under your belt and they do not have to be big. A small win is still a win!

It is no secret that positivity and happiness go hand in hand. I know that it can be hard to remain positive when chaos erupts around you, everyone is angry at you, your unhappy at work or you have another health complication pop up but that is when you have to practice “simple positivity”. Start with the small details in your life – finding these will have a snowball effect. Everyone has to start at the beginning but it really is possible to live positively….. just start small and surround yourself with positives.

All the best, Lily

lily@thelifewecherish.com

For more information on this website please see my first POST or this collection of ARTICLES.

Living with Chronic Illness, especially Cystic Fibrosis, means that hospital admissions are a fact of life. I don’t like it but it is something that I have to do for me to have something of a normal life outside of here. I need to spend time here to recharge and renew my batteries. I need IV antibiotics to help with the ever present infection in my lungs. I need dietary supplements to help me keep up with my high calorie/high energy needs. Tomorrow I will have a blood transfusion to help with my iron levels. These are all things I need to do help keep me out of here most of the time, to keep me with my loved ones. I know all these things. I tell myself every time I am here why I need to be here but that doesn’t always help with the isolation you feel.

Isolation is probably a funny thing to feel when you are never actually alone. And you are NEVER alone in hospital! And while I know I have to be here and that my loved ones are only a phone call away there are times when I feel so lonely. Tonight, during my phone call home, I could here activity in the back ground. I could almost see my family having dinner and relaxing afterwards to watch a movie. I wanted to be there with them, chilling out. It made me feel so far away.

The isolation comes with the territory so I have had to teach myself how to deal with it. Apart from reminding myself that my loved ones are only a phone call away or that they will be down to visit soon, I also give myself things to do so that I distract myself from feeling so lonely. This admission I have a had a friend also in which has given me someone to talk to when I need a chat, that has been great but sometimes there is no one else in. That’s when I set myself projects. It might be to finish a Workbook from my course. It might be to read a book I have wanted to read for awhile. It might be to organise something to do when I am out of hospital. This time I have given myself a writing project. I have been writing about living with Chronic Illness. About what to expect and how to cope. It has kept me entertained this admission and although I don’t know what I will do with it when I am done I have enjoyed being able to get all my experiences and opinions out of my head and into something else. Doing things like this really helps me feel like I am doing something productive and useful instead of just sitting around, doing nothing. It helps me deal with the isolation. If I am able to do something to distract myself it doesn’t hurt so much.’

Every body is different, everyone has different ways of coping with their admissions but I have found, through my own experiences and from what I have seen around me, that those who keep themselves entertained seem to heal quicker and get out of here faster. And by keeping entertained you can keep that feeling of isolation at bay for a little bit longer….

I am going home on Monday so I only have another couple of days to go, I am excited to go home to my loved ones and I will talk advantage of their closeness. 

Have a great weekend, Lily

lily@thelifewecherish.com

For more information on this blog or myself please see the ABOUT page, or the great posts on the ARTICLES page.

During this hospital admission I am lucky to have an old friend in at the same time. He also has CF and we have known each other since I was 11 years old! Almost 16 years! Goodness! I am grateful to be able to catch up with him as I have lost many of the friends I grew up with, CF taking them away from me way too soon. Tonight we have a had a great talk about growing up, spending time in hospitals and the effect that it has had on us.

We had a good laugh tonight thinking about the night that we had pinched a few 50ml syringes and had a midnight water fight! We got water everywhere, beds were soaked, blinds were sopping wet, the floor slippery and probably quite dangerous but we had an absolute blast. We were all laughing so much that one of the boys had a massive coughing fit and ended up vomiting from all the excitement. The nurses then worked out what was going on and boy, did we get into trouble! We were sent to bed early the following night as punishment but we went with a smile on our faces, for sure! We had a good giggle until we realised that we were the only two left out of the six kids there that night. It is so ironic that in a place where you could pretty much smell the fear when you walked in the door, I have some of my fondest memories. The joy of a children’s hospital is that we were all children and we had the ability to make the most boring or even frightening situation into something that helped put a smile on our faces.

I can think of many times when laughter really was the best medicine but I also remember some upsetting times that make it hard for me to return to that hospital, or for me even to remember them. The thing with having Chronic Illness and spending time in hospital is that at a very young age death becomes a topic of conversation. We often changed the subject very quickly but it lingered sometimes making for a very quiet lunch time. If one of our friends came in and they were put into a single room, we knew it wasn’t good. As I got older, I would try to comfort the younger ones as much as possible or I would do something to make them smile, distract them from their thoughts for the moment.

I had the pleasure of knowing some really wonderful kids. I noticed that a lot of these kids had so much personality. Despite spending most of their lives in hospital they were up beat, cheeky and so funny. Sometimes I would laugh so much my tummy hurt! You quickly became friends with your room mates and while there would be the odd tiff, the silence never lasted long! Some of these kids came from a long way away, which is even further away in a child’s eyes. I saw how hard it was for parents to leave their precious children behind, telling themselves it was for the best, praying that they would be cared for and treated with tenderness. I have no idea what it would be like for a parent to have to leave your child behind, life doesn’t pause because you have a child in hospital. I could see it tore their hearts out. For a while I was the eldest female patient in the ward and I became a big sister to some of the young girls who’s parents lived so far away they might not see their child for weeks. I regularly woke up with a little one in my bed, wanting a cuddle, someone to tell them it was going to be okay. Someone to love them. I did the best I could and really, I came to love some of these kids. I was often being asked by the nurses to help bath them as they wouldn’t cooperate with nursing staff, they wanted one of their own. You became family pretty quickly. That is the best of the situation. One of the worst experiences I had was going to the funeral of one of “my girls”, it was the first and last CF funeral I went to. She was only 10. It was way too much for me to cope with at only 15 years old.

Growing up in hospital has helped shape the person that I am today. I could to talk to a wall. I have very good communication skills. I make friends easily. I am able to be on my own. I can stand up for myself. I have learnt to entertain myself. If you are reading this while thinking of the child that you have to leave in the care of hospital staff, I can only say one thing about children and that is that they are resilient. If you let them, they will learn to find the fun in anything. Yes, they will be exposed to pain and sadness, that is the nature of illness and you cannot prevent that. However, as long as they know that they have a family who loves them completely as well as the opportunity to talk about their experiences, good and bad, then they will be OK. And that is all you can hope for.

All the best, Lily

lily@thelifewecherish.com

For more information on this blog or myself please see the ABOUT page, or the great posts on the ARTICLES page.

I am back in hospital and I have to pinch myself every now and then to remind myself that I am here for a good reason. I am here for the good of my health and after all, if you do not have your health then really, you have nothing. When I am tired and lacking in any energy it can be really easy to have a bit of a sulk that I am here, that my life is on hold while the world continues to keep on going outside these walls. It can be really easy to give into that urge to feel sorry for myself but I know, ultimately, it is not really going to serve me any good purpose. So, I sit here and look for something to be happy about. And as much as it might be easier to sulk, I have to admit I can still find things to be happy about.

I have an excellent medical team who I know has my best interests in mind. I am able to talk to my friends and family daily. I have access to the internet and great reading material. I will be able to go home in a few days and then my life will keep on going the way I want it to.

They may only seem like small wins but really they are all I need. I have my family and friends only a phone call away. They see me when they can. That is all I ultimately need.

So while I am tired and have no energy, I have to be here. And really I am lucky to have somewhere to come to when I need it. I get quality medical care which if I didn’t have then I wouldn’t be here at all. And that makes me happy.

“We tend to forget that happiness doesn’t come as a result of getting something that we don’t have, but rather of recognising and appreciating what we do have.” – Frederick Keonig

All the best, Lily

lily@thelifewecherish.com

For more information on this blog or myself please see the ABOUT page, or the great posts on the ARTICLES page.

Chronic Illness and disappointment are not alone mutually exclusive, we all experience disappointment regardless of our health issues but living with Chronic Illness means that it definitely comes with the territory. To have your hopes and dreams knocked out of your reach due to ongoing health problems can be a very upsetting thing to go through time after time. To be unable to achieve things that most people take for granted in their day to day lives can be heartbreaking. But as I mentioned, this is something that is not exclusive to our ” health problems”. Everyone will have to cope with disappointment at some point or time in their lives. Sometimes it is not our own actions or abilities that creates that sinking feeling, sometimes it is through our relationships, family, friendships etc that you get hit with the disappointment stick. It doesn’t matter where it comes from, what does matter is what you do next…….

It would be very easy to become bitter and negative when someone or something disappoints you. It is after all part of our nature to avoid that which hurts us and we often somehow think that by becoming “harder” that we are saving ourselves future heartbreak. Unfortunately this isn’t so. If we can use that disappointment to create a positive change in our lives then it will make us a stronger, more resilient.

When I suffer a disappointment this quote helps me focus…..

“Disappointment to a noble soul is what cold water is to burning metal; it strengthens, tempers, intensifies, but never destroys it.” – Eliza Tabor

I then do two things. Firstly, I acknowledge that I am disappointed. This is sounds ridiculously simple but you would be surprised how often we walk around pretending, denying that they are disappointed. To acknowledge it straight up gives you the chance to move past it. We cannot change what we don’t acknowledge. We also cannot learn from something if we deny our feelings about it in the first place. Take the time you need to acknowledge your disappointment and any other feelings that come with it. Don’t believe talk that the best thing to do is move on quickly, like it never happened. It will then never be resolved, you will not gain the lesson that you needed to get from that situation. Sit with it a while. Don’t wallow but look at how it was brought about, how it makes you feel and then, secondly, look at what you can do to move forward, lessons learnt. This is not a process that will happen overnight but it is something that deserves some soul searching for a couple of days at least. My personal way of dealing with disappointment is to write it all down. Get it out of my head and into a journal or anything I have close by. If someone else is involved, write them a heart felt letter and then sit on it. You do not have to send it, if, once you have the advantage of time and space, you feel it an important step in your recovery, then do so. If you have someone that you can trust with your feelings than also talk it out. I feel the more you are able to get it out of your head than quicker and better you recover from it. I also take notice that I am going to be feeling fragile and emotional so I am not so hard on myself and remove myself from other situations that could upset me until I am feeling strong enough to deal with anything that may arise from my disappointment.

It will not be easy, it will really sting, but you will come out the other side, probably much sooner than you expected. Be gentle on yourself and remember that this will strengthen, not destroy you.

All the best, Lily

lily@thelifewecherish.com

For more information on this blog or myself please see the ABOUT page, or the great posts on the ARTICLES page.

As we Australians have learnt this week, when you have nothing, when your life has been destroyed, it is the loved ones you have beside you and the kindness of strangers that will help you through. No matter what the situation is or where it occurs, it is not your possessions, your bank balance or your career that will help pick you up and dust you off. It is those around you.

The same can to be said about living with Chronic Illness. Your doctors are an important part of your “team” but at the end of the day they can only do so much. It is the loved ones you have that rally and carry you through. I have seen it happen time and time again. In fact, it happened to me…..

A couple of years ago, when I was fighting for my life there came a point when the doctors said that there may be nothing more they could do. This was a massive blow, not only to me but to my loved ones. You would think that those words would render you useless but instead my loved ones got started on the business of pulling me through. Whether it was a constant bedside companion, home cooked meals stacked in the freezer, my own pillows brought from home or a collage of family photos stuck to the wall, they were a constant presence, there through every scary moment. It is what I think, ultimately, saved my life. Although, it wasn’t just my loved ones that got me there. The kindness of a few medical staff that went above and beyond their standard responsibilities was a massive support also. These people barely knew me but they cared for me like I was one of their own. Massages, back rubs, shoulders to cry on, books, little presents, snacks…… the list goes on. These natural carers are stars that you definitely want on your “team”. They protect you from the not so nice staff members that you occasionally happen upon and do their absolute best to make you as comfortable as possible. These people are angels. I am so grateful for their help at an extremely difficult time.

It can be really hard for us to reach out for help sometimes. We can be proud and often do not want to be seen as weak but sometimes you receive a blow that is so enormous that you cannot move, you are paralyzed. You are not capable of pulling yourself up…… this is when you need to lean on others. These people are often there before you even realise you need them – often you do not even need to ask for help, they are already there getting on with business. There will be a few times in your life when you will need someone to lean on, there will also be times when you need to be leaned on. Whichever way it goes, remember that we are not defined by what we have or who we think we are, we are defined by the love and support that we give to ourselves and especially to others in their time of need. That is what makes you truly great.

All the best, Lily

lily@thelifewecherish.com

For more information on this blog or myself please see the ABOUT page, or the great posts on the ARTICLES page.