Tag Archives: decisions

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

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?

On and off throughout my life I’ve played around with different ways of monitoring and managing my financial situation (i.e. having a budget). For most (if not all of my adult life) that situation has not just included me, but my husband as well.

This complicates things in some ways because we come from very different backgrounds. His family life was secure and his parents have always (as far as I’m aware) been financially secure, buying their own house early on and worked with a financial adviser to ensure they could retire early. He was always able to get what he needed plus more, and went on many family holiday overseas and interstate. On the other hand, my parents are separated and both had very little money and are still working as they don’t have much (if any super saved). We lived off hand-me-downs from cousins and family friends, and had to do without quite a lot.

We have very different values when it comes to money and what it means for us. To E, having a certain level of income is security and without that security there it is ‘impossible’ to consider planning any major expenses in the future. To me, money isn’t everything. I would prefer to have less money but greater health, family and community connection, and consider saving money even when it feels like there’s nothing to save.

Since I’ve been ill we’ve been living off one income and given that I’m not contributing financially I asked E if I could develop a budget for us. The problems I’ve found is that I would like to budget extra money towards having some savings and paying off our mortgage quicker (and I mean actually plan to save), as well as budget money for specific activities I know is going to cost us money. On the other hand, E sees this budget as a way of seeing what our essentials are and then he’d like the rest of the money to just be a ‘pool’ we can dip into for other expenses and use for whatever we like.

At this point I’ve put that conversation on hold. Certain things I’ve specifically added to the budget and others I’ve left out.

Why set a budget and stick to it?

Part of simplifying my life is simplifying levels of stress. On multiple occasions we’ve had to make decisions on whether to buy certain things because they were at a good price. These things are usually things we probably didn’t really need. Without a budget I stress out and over-think all the options. With a budget in place I can say yes if I know it fits in the budget and we need it, if we don’t need it or it doesn’t fit within the budget I can easily say no without the guilt.

Another reason is to be able to actually see where our money is going. Things like buying lunch at work every day is costing almost $3,000 a year!

When we’re aware of where our money is going we can make informed choices about where we can cut back and save.

I love to see the numbers changing (either debt going down or savings rising). By having a budget I can track the change monthly or yearly and actually see how we are doing financially.

Budgeting 101

If you haven’t set up a budget before here are some simple tips to get you started:

1. Track your spending. If you don’t know where your money is going you can’t set up a budget. I suggest tracking your spending for a month before moving to the next step and continue to track for a few months after so you can average out your spending in each category.
2. Use a template. The idea of setting up a budget excited me but also almost overwhelmed me. I didn’t know where to start or what to include. I found a very easy it use annual budget spreadsheet (that breaks it down into months and automatically tracks the outcome) in my Excel templates. There are also templates online and I’m sure you can find one that suits your needs.
3. Complete the template and stick to it. Once you’ve written out you budget you’ll be able to see if you’re spending more than you’re earning and you’ll be able to identify areas you could cut back and set limits on. Decide on your approach to making sure you earn more than you spend and stick to it.
4. Review regularly. I’m going to try monthly and annual reviews and see how that goes. Others do weekly or even daily reviews

Do you spend time reviewing your finances and setting financial goals?

How do you track your budget?

Life with a chronic illness is extremely difficult physically, mentally and emotionally (spiritually). One of the biggest issues I’ve found that can fall under all three of these categories is determining which activities to undertake and which to avoid. In other words, determining what’s worth it!

What activities are worth causing an increase in symptoms?

How do we know if an activity will be OK or if it will cause a crash?

These types of questions are part of a constant mental struggle I have on a daily basis, and I’m sure many of you who also suffer from chronic conditions have the same struggle.

For example, over the weekend my husband participated in a rogaine. Before becoming ill I had participated in a few of these events with him (and even participated in one during the first few weeks of my condition – which probably was one of those ‘wrong’ decisions). Since becoming ill I have come along to the camp site once and stayed at the camp site reading and resting while he participated in the rogaine with our friends.

There have been other times I’d planned to go up but the weather had been so horrible I’d decided it wasn’t worth it and stayed home while he was there.

This time we planned again for me to come up and stay at camp but the weather on the few days leading up to the weekend were horrible with lots of rain and the day we were meant to leave it was forecast for thunderstorms. So, once again I had to think about the impact going up with them would have on me versus the impact of staying home alone.

After much deliberation (and discussion with both E and my mum) I decided the benefit of getting away from home and having a change of scenery would be worth the impact of travelling and camping.

The location of the rogaine was over 3 hours drive from home so travel did have a major impact on my pain and fatigue levels. We stopped part way there for dinner but didn’t arrive and set up camp until around 11 pm, way after my bed time.

During the day while the others were out rogaining I spent the day reading, drawing, resting and meditating. Yes, I had crashed as a result of the travel but the time I spent meditating and reading has once again had an impact on how I look at my life. The benefits I’ve got from the practices I read about in How to be Sick by Toni Bernhard will be long lasting. If I had stayed home I may have finished the book but I wouldn’t have spent as much time practicing the techniques and resting.

(c) Megan S, May 2014

We drove home yesterday morning, getting home around lunch time. I fell asleep shortly after lunch and slept most of the afternoon. Unfortunately, I fell asleep before doing some of the tasks E had asked me to complete (put dishwasher and load of washing on) so he was upset with me for not getting my priorities right but I think the sleep is what I needed.

Today I’m struggling with very low energy levels but my pain levels have remained at about 3/10 (what seems to be my baseline in cold/wet weather) and mentally I’m feeling calm and content.

For me, this weekend away was worth the increased pain and fatigue but I still feel that the mental struggle of determining what is worth doing when you are living with a chronic illness is a burden that I still have to face on a daily basis.

Thanks to what I read and practiced over the weekend I feel that I can face this burden a little more calmly and accepting of where I am at this stage in my illness.

How do you deal with this mental struggle?

What techniques or guidelines do you have in place to help you determine these limits?

Photo (c) Doug Quine Photography, 2011

I have not driven in the last 6 months (apart from one short drive after one of the doctors recommended I try again). This is because whenever I’m in a moving vehicle (and sometimes when walking) my vision goes unfocused after less than 5 minutes and I don’t feel safe driving if that happens.

But I know being able to drive would allow me a bit more independence than what I have now. At the moment I rely on having someone to drive me for any appointments or outings I may want to make. I have attempted public transport several times but I’ve found that when I do that by the time I get to my destination my pain levels and fatigue are so high I can’t focus or enjoy myself.

At this stage I’ve decided that public and personal safety is more important than my independence, but I know that being able to drive would reduce the burden on E and our parents who are constantly driving me to appointments.

Do you drive or have you chosen not to?