The shock of a diagnosis – Part 1

by Lily on August 28, 2010

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.

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A new focus, a new beginning….

by Lily on August 12, 2010

Well, doesn’t time fly? Where has it gone? It has been almost a year since I have written on this site and I cannot believe it – it has flown by. Lots has happened, which is the norm when you have not written in so long! So what have been the highlights? Well, many things. Spending time with family and friends, learning and studying, enjoying life! The pics below are some highlights of 2010 so far….. So why start writing here at TLWC again? Good question!

I am in a different place to where I was last August. I am still living with CF (obviously) and so I have spent a lot of time over the last year thinking. About CF, about living with CF, about everything that comes with living with Chronic Illness. Chronic Illness and Injury really changes the work/rest/play dynamic in your life. And while I consider myself a proactive and conscientious CF “survivor” I also have times when I struggle with the unique issues that having CF bring to my life. I have come to terms with the facts of CF but sometimes the “lifestyle” issues that come with having CF really have me stumped.

Some of those “lifestyle” issues have included working, studying, having a career as well as a life outside of CF. I have spent many years trying to find out what I want to do with my life, what I want to be when I grow up. You know, the usual!! Having CF has made this decision making process much harder than normal. I had so many things I wanted to do and be but my body was not able to cooperate. When it became impossible to work a 9-5 anymore I had a dream of being able to work from home, productively, happily. I have searched high and low for a business or job that I could undertake from home. Without luck. If you want to work and are not able to do the 9-5, like many people with Chronic Illness or Injury, then you need a plan, you need to get creative and you need to realise that you are not going to be handed an opportunity, you have to CREATE one. So what to do? How to do it? I researched, soul searched and head scratched. After a few investigations, and much sulking, I have finally got myself a plan. I finally got clued in and changed my thinking process. Thank goodness!

So that is where the new chapter of The Life We Cherish comes in. I am now trying to work towards that goal of finding the right fit for me, in work, in study and in life. TLWC is about inspiring those with Chronic Illness and Injury to be able to live a happy and fulfilled life. I REALLY do believe that we can achieve our dreams, whatever they may be, we just have to be creative in how we approach them. We have to start working smarter, not harder. TLWC will still be about inspiration and motivation as well as about how to deal with the day to day “stuff” that Illness dumps on you. A whole bunch more of practical information on how to work towards your goals AND survive day to day. I am, however, going to make a couple of changes to TLWC. In the past I have written this blog as only “Lily” to protect my privacy and my loved ones who are mentioned on here but I am now going to open up the TLWC to my life and my families life. My mother and I have decided to work together on a couple of articles from a mothers perspective, how she feels, how she copes and so on. Mum is already chomping at the bit to get into it!! Go Mum! I have also got a list of people I personally know who inspire me in my day to day battle against failing health. They live with either Chronic Illness or serious, life-altering injury and they have taught me a whole lot about fighting the good fight. I am NOT going to promise to write 3 times a week but I will promise to write regularly about the practical and unusual ways that I go about having a life while living with health issues. TLWC is about my life  but I am sharing this because I know I am not the only one who struggles with the issues that your health can throw at you. I am not alone. I think that we can all learn from each other about how to deal with health issues and still have a life. I am just wanting to do my bit. If it helps just one person than my work here is done….

And I am always super excited to hear from TLWC readers so email anytime!

Lx.

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HMP Series – Medical Workbook Part 3

August 10, 2009

Finally! Here is the final part of the Medical Workbook series. I have been using my Medical Workbook this week quite abit actually, a bout of Whooping Cough has hit some members of my family and I have used my MW to look up immunisation/booster shot information as well as my medical history (I had [...]

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HMP Series – Medical Workbook Part 2

July 16, 2009

Well the feedback from the first part of the Medical Workbook has been very encouraging. I shall waste no time in getting onto the next part….. Daily Routine Outline A Daily Routine Outline is very handy for a number of reasons. When you are not feeling well and your mind is elsewhere it can be handy [...]

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Health Management Plan Week – Medical Workbook Part 1

July 14, 2009

OK, here we are. This week we will be focusing on a very important part of your Health Management Plan (HMP)….. the Medical Workbook. This week I will show you the items that will make up your Medical Workbook which is a very necessary part of your HMP. This is your “go-to” tool for emergencies, [...]

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