Tag Archives: emotions

Just One of Many: Difficult decisions with Invisible Illness

09 Sep 14
Megan
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This year’s theme for Invisible Illness Awareness Week is “Just One”.

Invisible Illness Awareness Week 2014

My whole life I have suffered from invisible illnesses. From a very early age I suffered from asthma and allergies. Because I grew up with them I know how to manage them reasonably well (although I’m still identifying and learning to manage new allergies all the time). The newer conditions (Fibromyalgia, ME/CFS and Pelvic Congestion Syndrome) I’m still learning how to manage and live with.

I feel like since I have been living with these conditions my whole life has been turned upside down. Many things have been put on hold or given up. I haven’t worked in over a year, I struggle with social events and I only just manage to stay positive with the limited level of activity I’m capable of.

Lately, I’ve been struggling more than usual with staying positive. I honestly don’t mind that my ability to do many of the things I love has been limited. I don’t really mind too much that I haven’t been able to work for so long and that I haven’t been able to go on the holidays I dream of.

There is JUST ONE thing that I really struggle with and I think it is something many women in my position are likely to be struggling with as well.

Many of my family and friends are either pregnant or have young children in their families. Although I am extremely happy and excited for them, it also makes me sad. Before the new conditions hit, I had believed that by now I would be a mother, or at least we would be trying for children.

Now my life is filled with so much uncertainty. Although I’m told that my conditions do not affect my fertility, many of the drugs I’m on at the moment can OR can affect the development of a baby. I’m not sure my body can cope with pregnancy or with looking after a young child. My bone density is low which means I have a higher risk of stress fractures and very weak bones. My pain is going to increase during pregnancy due to the pelvic congestion and all my other conditions have a 33.33% chance of getting worse as well based on what information I’ve been able to find.

Despite all of these issues, having a family of my own is the number one most important thing to me. Ever since I was a child (possibly even as young as 4 when my sister was born) I have wanted to be a mum.

If I had to choose JUST ONE activity I would like to achieve in my life it would be to have a child of my own.

I have a difficult decision to make and I feel we need to make it soon. To try for a biological child of our own or to adopt. There are treatment options available for some of my issues which I have been told we can’t consider until we’ve finished trying for children.

Whichever choice we make, I know that any child we bring into our family will be loved and cared for. I may not have the energy or strength to be a ‘normal’ active parent, but I will be the best mother I can be. We have a wide network of family and friends who I know would do whatever they could to help us as well.

What is your JUST ONE story?

Are there others out there who are struggling with decisions related to starting a family with multiple chronic illnesses?


Finding your Passion

29 May 14
Megan
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As you’ve probably noticed I’ve been a bit sporadic with my posting lately. I’m going to try and rectify that and aim for 2 posts a week, on a Tuesday and a Thursday. Today I want to expand on one of my Top 5 things I’ve learnt in a year of Chronic Illness, having something you’re passionate about. Lately I’ve bee reading Keith Abraham’s It starts with Passion. This book is a self-help book focused on helping people to identify what they are passionate about and how they can make it happen.

Image retrieved from GoodReads. It starts with passion

Image retrieved from GoodReads.

I haven’t quite finished the book yet but I have really enjoyed the challenges and activities it contains to help you identify your passions. Since childhood I have been passionate about family, the environment, and learning new things. These passions are still high on my list today but I would also add that I’m passionate about helping others and making a difference in the world. When I’m doing something that I know is helping others and the environment, and that allows me to learn new things along the way as well I’m at my most happiest.

Me enjoying my work when I was delivering sustainability information to people in a community garden.

Me (in 2013) enjoying my work delivering sustainability information to the community at a garden open day.

Abraham suggests that to find your ‘Passion’ you need to identify what is meaningful to you. What emotions energise you and make you feel good about yourself? Why do you want to do something? If you know your reason WHY, and it’s linked to making you feel good about yourself, you are more likely to achieve your goals. What is that one thing that, whenever you do it, you feel great?

Setting Life Goals..

The first big challenge that Abraham sets is to write your life To-Do list, that is to create a list of 100 goals you would like to achieve. It doesn’t matter if you think you can do it now, what matters is to get it down on paper. I did this challenge on Monday. It took me most of the day to complete my list of 100 things I would like to see, do, experience or own, but I got there. My list includes things like starting a family (probably one of my longest held dreams), starting and running my own business, delivering workshops and presentations that help people live a better and more sustainable life, and travelling to various countries I’d like to visit. It also included things like being financially secure, learning new skills, and finding a work/life balance that enables me to live a fulfilling life even with my chronic illnesses.

GOAL #99: Eat vegetables with every meal

GOAL #99: Eat vegetables with every meal

Some of the goals sound, at the moment, impossible to me (delivering a TEDs talk), others are very simple I just haven’t had the time or energy to actually complete them (writing a will and framing and displaying our wedding pictures), and others are things I am already doing but want to make sure they stay part of my daily routine (meditation, yoga, exercises).

Identifying the Why…

Once you have your list of 100 goals, the next step is to go back through them and think about how you would feel if you achieved them. What are your driving emotions? You will probably notice a pattern emerging in the emotions that you are identifying. Abraham states that the top 3 emotions that you find are your driving emotions, the ones that you want to feel every day. At this point you take those 3 driving emotions and define what they mean to you. For me, my driving emotions are Passionate, Grateful, and Accomplished. These are the feelings I want to feel on a daily basis. My definitions are: Passionate: I care deeply for my family, friends and others. My actions are in line with my beliefs and it’s obvious to others that they are important to me. My passion is infectious – others listen and understand the importance, my words and actions enourage others to share my passion. Grateful: I recognise how lucky I am to have everything I have. I celebrate my small achievements and take notice of all the wonder the world provides me with. My body is relaxed and healthy, and my relationships are strong. I am happy within myself and remain calm in the face of adversity. Accomplished: I know I am making a positive difference in my family and work life. My work matter, makes a difference and is important to me. I am creating a positive, passionate legacy that will benefit others even after I’m gone. I am able to take complex topics and simplify them so that others can understand and take action on them. Thanks to having completed this challenge, I am feeling more confident about taking action to follow my dreams. I’m working on a few big projects at the moment and I will share them when I’m able to. For now though it’s time for you to take some action… My challenge to you today is to write your own list of 100 Goals and to identify and define you’re driving emotions. Please feel free to share your results in the comment section. Also, please let me know if you’d like me to share my list of 100 Goals. If anyone wants me to I’ll type it up as a separate post.

Reducing Technology

20 Dec 13
Megan
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I’ve already discussed the general benefits of getting away when you have chronic illness. Today I want to focus in on one key factor I believe was beneficial to me; reducing my reliance on technology.

In today’s environment there is technology everywhere. This technology can be a good thing as it allows us to connect to others in a way that wasn’t available before.

For example, without technology I wouldn’t be here writing to all of you. People who live all over the world are able to connect in real time via the phone or the internet. Since being ill my connection with a lot of my friends and family has become very connected to the use of technology. Without it I’m sure my relationship with some of them would be a lot less connected or even completely gone. For these reasons along with many others to do with safety and , I do appreciate the importance of technology in our lives.

However, having gone basically technology free (other than a nightly phone call to E each night) while on my girls weekend on Dangar Island I have noticed how much more relaxed and happy I am without that constant connection and constant interruption to my daily life. This has got me rethinking my connection to my various technological items (tv, computer, tablet and phone). I do use these items for activities that are good for my health, such as connecting with friends and family as mentioned above and tracking my symptoms and energy usage, but I believe I am too connected to these items for my mental and emotional health.

To try and decrease stress and anxiety levels and increase feelings of happiness and productivity, I have decided to limit my time on each of these items. On a normal day I am aiming to limit:

  • TV only in the evenings when E is home to ensure I try and do other activities during the day. This will not apply on crash days and really bad days when I can’t do any high level activities.
  • Twitter/Facebook/Email/Blog Comment replies a maximum of three times a day (after first relaxation and exercise in the morning, around lunch time, and in the evening before dinner).
  • Blogging and other online activities a maximum of 2 hours a day.

By reducing these activities I’m hoping to increase my emotional wellbeing by reducing my anxiety and stress related to having to respond to messages as soon as they arrive and increasing the time I spend outside in nature which I find very relaxing and beneficial to my health. I believe it will also increase my mental wellbeing by increasing my creativity and productivity to fill the remaining time in my day.

I am also considering having a regular day or weekend that is a technology free time (even if it’s once a year). I loved my time on Dangar Island and believe I have come back refreshed and reenergised to tackle my problems and dreams for my future.

Have you ever tried having some technology free time?

Emotional Healing through dreams?

07 Dec 13
Megan
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So recently I’ve been having some very vivid, emotional but somehow all muddled up dreams.

Most of my dreams have included a mixture of people I know now, people I knew in the past and people I don’t know at all. They don’t necessarily include events I’ve actually experienced but the feelings and emotions I’m waking up with (sometimes in the middle of the night) are ones I can vividly remember feeling when I was younger.

It would be fair to say I grew up in a broken home. My parents separated when I was around 6 years old, my sister was around 2 and my brother not even one. The separation and divorce did not go that smoothly and I can remember quite a few arguments between my parents when we were being dropped off for custody visits.

On top of that when my father remarried the woman he married had 3 older children of her own and they fostered a child as well. As a step family they were completely dysfunctional (if you’re reading – sorry dad, you didn’t make the best choices :-)). We used to visit every second weekend and for the first half of every school holidays. During that time we’d hardly get to see dad because he was off working and it felt more like our step mum viewed all of us kids as slave labour. When we did get to see dad he was exhausted as he seemed to be working night and day.

This led to many, many nights crying myself to sleep and wishing I was back home at mum’s house. Again, sorry dad but I never felt like I was home when we were there. I had a lot if mixed up emotions at this time.

I loved both of my parents but at times I wasn’t sure that either of them loved me. On several occasions I even considered running away, which seems to have been a subconscious consideration as well because I sleep walked out of the house once and woke up in the neighbour’s yard and had to knock on the back door to be let back in.

The feelings of worthlessness and insecurity transferred across to how I acted at school. I had a lot of trouble making friends and when I did make friends in was never sure if they actually liked me. This fear I’ve only recently lost in the last 5 years as my relationship with E and our closest friends has blossomed.

These dreams I’ve been having have made a lot of the fear and insecurity I experienced when I was younger resurface.

This could have been a bad thing and dragged me down into depression, but as I’m trying to take the positive approach to this illness, I’ve been applying that to my dreams as well.

Whenever I wake up experiencing those dark and confusing emotions I’m attempting to sit back and analyse what has caused it and see how I can reevaluate the situation to be more positive. This means I’m looking both at the situation that occurred in the dream (if I can remember it) and trying to find what situations in my life may be stressing me out to cause these dreams.

So far I haven’t been able to work out what the real life cause of these feelings are but I am learning new ways to cope with these feelings as I recover from my late night (sometimes multiple times a night) wake ups with my heart racing and the intense tightness of a scream or a cry in my chest.

The best way I can get through these dreams is to believe they are occurring for a reason and they are there to help me heal from the emotional damage of my past.

Have you experienced a recurrence in emotions about events you thought were history for you? How have you dealt with those situations?

Do you believe your dreams can help you heal?