Clown Doctor’s visit the waiting room

Another day, another waiting room. This time it was for a meeting with Nat’s doctors to see what we can do about pain management.

We arrived in plenty of time. Nat was armed with his trusty 3x3x3 cube, I had my iPad to spend some time on my jigsaw puzzle app, and my dad was there ready to scramble cubes when needed. While we were waiting, in walked the Clown Doctors.

As often happens, the Clown Doctors are attracted to Nat’s cubing and they remembered him from when he was an inpatient! We told them that he was the 7th fastest in Australia at solving the cube, and they asked for his autograph. The two doctors then started to argue over who would get his autograph!

We were then called into the appointment and they moved on.

Who is going to get his autograph?

The meeting was a bit overwhelming. We have been given two option for moving forward – sympathetic nerve block or ketamine infusion. At this point, we’re trying to work out what to do, though Nat’s not all that keen on spending 5 days as an inpatient for the infusion.

All we know for sure is that something has to be done to help manage his pain. Living with a constant pain level of 8/10 is not great.

Diagnosed with Depression!

I have recently been diagnosed with severe depression. This is hardly surprising given everything that is on my plate… even my doctors say so. One thing I’ve been told to do is write about what is happening, so here I am.

Part of the issue at the moment is that I’m spending so much time doing things for other people, especially my kids, that the SuperMum cape has come back on! I need to ditch it again as soon as I can and get my life back on track.

I have also been told that it’s a good idea to write about some of the things in my head… so here goes.

Watch this space as I find ways to ditch the cape and take control of my life once again. One day I’ll get on top of it all again…

Mix up my Jewellery

I have a lovely collection of necklaces and earrings, most doesn’t get worn very much as I tend to choose the same necklace every day and just leave my sleepers in my ears.

Last year, I decided to make a conscious effort to mix it up a bit and wear some of these pieces instead of just letting them sit and gather dust.

It’s amazing what a boost simply wearing a different pair of earrings or a different necklace can do. They can add a bit of colour or bling to an otherwise dull day, as well as mix up the routine of every day.

Read a book

I have always loved reading, and reading books is one thing I’ve found helps when trying to look after myself.

I mostly read books in small pieces of time – a few minutes here and there. Often while waiting for medical appointments, school pick up, or even on the toilet!

To read in these small pieces of time, I find that modern books work better than the classics. Classic novels were designed for people who had long periods of time to devote to reading. I discovered this last year when I was reading Pride and Prejudice.

As well as books written for adults, I also read books for children – middle grade and YA. I also read some non fiction books.

While I prefer to read print books, ebooks are also great for reading on the go.

Books provide a fantastic escape from the stresses of real life, and there are so many books out there you are sure to find one that will interest you.

Looking after yourself – when you don’t have time!

I’m participating in the Blog Your Book in 30 Days challenge during April. I’ve been struggling to decide which topic to do this month… and have decided to post some tips on how to look after yourself when you have no time!

A bit about my life at the moment.

I am a single, working mum of teenage boys. Both my boys have chronic medical conditions.

My younger son has Chronic Fatigue Syndrome and Neurally Mediated Hypotension. This leaves him with very little energy and he only goes to school part time. My older son has Complex Regional Pain Syndrome and Fibromyalgia. Right now, he only attends school a couple of periods a day and has 3-4 medical appointments every week!

In all of this, I am juggling a job, running a household (cooking, cleaning, etc), writing, and finding time to sleep!

So many books and articles I read tell me that I have to look after myself – eat well, exercise, have hobbies, and more – and to schedule time each day to do this.

With my life, this is next to impossible! Day to day, I have no idea what life will throw at me. Will we need to take a trip to hospital? Will my son be able to attend school at all? Will I have the energy to do the essentials of the day? Most days, the thoughts of taking time out to “look after myself” all seems too much.

Thinking about things further, I have found there are little things I do every day to look after myself. From the outside, it may not look like much, but it helps me to cope with everything life has to throw at me.

Over the next 30 days, I will share one thing every day that I do to look after myself. I hope you enjoy these tips and share some of your tips too.

Ask for help

Needing some help

I don’t know where I got the idea that I had to do this all myself. Even when I was married, I got the idea somewhere that I had to be good at everything – parenting, housework, cooking, work, etc – even when I knew that was unrealistic.

Having two chronically ill children, adds so many extra tasks and responsibilities, it’s just not possible for one person to do this, but for some reason, I felt I had to! Crazy, I know.

The biggest issue I’ve had lately is asking for help. Maybe that’s over-simplifying the issue… I know I need help, I just haven’t known what help to ask for! I have a great support network who ask if there are things they can do, but I haven’t known what to ask them for.

Lately, I’ve been thinking about this more and come up with a list. This can apply to parents of chronically ill children, as well as any parent who is feeling overwhelmed and needs some help.

  1. Meals – these are always useful and welcome, however check first before dropping something around, unless it can be frozen!
  2. Groceries – sometimes I struggle to get to the supermarket to stock the cupboards with staple items such as milk, eggs, bread, and snacks to feed two growing teenagers! Delivering a box of groceries would be appreciated, again, check first to see what items are needed and if there are any dietary issues.
  3. Housework – I know that this is one of the first areas to slip when life gets tough. Often it’s not so much having the time, but having the energy to tackle that pile of clean washing, scrub the bathroom, or do the vacuuming. Before tackling the cleaning, ask what are the areas that are causing the biggest headaches and start there, or even provide the family with a cleaner for a few weeks.
  4. Transport – are you in a position to pick up or drop off kids to school or other activities? This could be very helpful meaning parents don’t have to do all the driving. There may also be some medical appointments where Mum or Dad doesn’t have to be there but the kids are unable to get there themselves.
  5. Money – having chronically ill kids is expensive! There are medical appointments, parking at the hospital, medication, mobility aids, dietary requirements, and more that parents need to pay for. Sometimes there can be a choice between getting a prescription filled and doing a large supermarket shop!
  6. A listening ear – parents of chronically ill children are bombarded with advice. Some of the best assistance I’ve received is from people who are just happy to let me talk and get out all the stress over a cup of coffee, or ice cream! These friends will just listen without offering advice, and it’s usually accompanied with a hug and some tissues!
  7. Home Maintenance – this could include anything from offering to mow the lawn and weed the garden, to taking the car for a service or fixing things around the house. These are often bigger tasks that can be hard to organise, even calling a handyman to do some of these jobs is just one more thing that parents need to do but often get pushed down the list.
  8. Something fun – for us, getting out and doing something just for fun, like going out for dinner or to see a movie, rarely happens. These can be a strain on already stretched finances and something else to spend energy on. Offering to take the parents, kids, or the whole family out for a fun activity or giving a voucher for movie tickets or similar, will be most appreciated.

I’m sure there are other things you can add to the list, and I’m sure it will grow as I think of things too.

What things have been the biggest help to you and your family? What would you add to the list?

Find a Base Line

Finding a baseline…

When my younger son was going through a course to help him with his ME/CFS, he learned about finding a good baseline to help. This included school, activity, and rest. At the time I thought this was a good lesson for everyone, and something everyone in my family needs…

At this point in time, it has been hard to find a base line that works for the whole family, but it’s something we are working on.

Right now, my younger son attends school four days a week – Monday, Tuesday, Thursday, and Friday. Wednesday is a rest day for him, and a day he can catch up with homework. He also has a reduced work load so he has rest periods during the day.

For my older son, we are working on a routine for school. We are hoping this will start with classes the last two periods of the day, and lunchtime, every day, but it’s a goal right now.

With the boys school routines set, it will mean that I should be able to do my work hours. Unfortunately, this will mean that my lunch breaks will be spent driving kids around, but it will mean that my hours at work should settle.

I feel that once we have the school/work routine sorted, we can start adding things such as regular physio appointments and extra curricular activities to get them into a routine as well.

From everything I’ve read, a routine is important to a good baseline…. it’s a work in progress, but I’m sure we will get there.

Writing again?

Getting back to blogging!

Since I started this blog in 2011, I have stopped and started so many times I’ve lost count! But now, I need to work harder to ditch the cape than ever before.

You see, now I have two children with chronic medical conditions, and I work, and write, and am a single mum… Alright, the chronic medical conditions are nothing new, but they have got much worse over the last 12 months and it’s made life more difficult than before.

Last Easter, my older son came down with a condition called Complex Regional Pain Syndrome. This is a neurological condition that means his brain is sending weird messages to his leg to say there is an injury when it isn’t. This condition has enabled us to see the right people to diagnose Fibromyalgia, a condition he has had for the last 6 years, but we haven’t had a name for it.

My younger son has myalgic encephalomyelitis, otherwise known as ME/CFS or chronic fatigue syndrome. He’s had this for three and a half years. Recently he’s been diagnosed with neurally mediated hypotension, in layman’s terms, he has very low blood pressure.

My older son has multiple medical appointments every week, my younger son doesn’t have quite as many appointments, but he has regular follow up appointments with his specialists. For many of these appointments, they are given to us and we don’t have much choice when they are. So I am juggling these with work!

As well as this, I need to feed the family, do the housework, and spend time looking after myself!! Life is crazy, but I’m slowly learning strategies to help us cope with everyday life.

I hope you will join me on my journey to realise I can’t do everything, and share with me your suggestions and experiences when I ask questions.

Saving money

Saving has always been a challenge for me. I’ve tried numerous methods, but something always comes up to deplete the amount I have – usually medical bills or school expenses.

A long time ago, I had a money tin that could only be opened with a can opened. In the space of about 3 months, I saved nearly $300 simply by putting in all my gold coins!

The boys and I have been trying to save for an overseas trip along with other things, such as my 13 year old wanting a 13×13 Rubik’s cube. I remembered the tins and suggested them to the boys. I hadn’t seen them for a while, but we still liked the idea.

Yesterday when we were out shopping, we went to the local cheap shop to find tins. We couldn’t see them on the shelves, so we asked the shopkeeper. It turns out they were up really high (no wonder we couldn’t see them!).

Proud owners of new money tins

Proud owners of new money tins

They only had two types with cash on them, the other was a Frozen theme. Guess which one I got?

When we got home, I got a permanent marker and put our names on the top. We then got any spare change we had to kick start our savings. Currently, there isn’t much inside, but we are looking forward to having the tins get heavier and see how much money we can save.

It’s been a long time….

Just a nice picture to put here

Just a nice picture to put here

It’s been a long time since I’ve posts here, I’m sure you’ve all seen the tumbleweeds blow through…

To be honest, I’ve been spending too much time trying to be Supermum lately.

If your new here, or it’s been so long that you don’t know my story, about 19 months ago, my then 9 year old came down with glandular fever. That has since turned into chronic fatigue. He is now 11 and is doing school by distance education as he wasn’t coping with being at school all day.

My 13 year old is in year 8 at high school and has severe growing pains that can leave him in so much pain he can’t walk.

I am a single mum, I work, and I’m an author in my spare time (last year I published my first book!). In general, I’m trying to do way too much. I need to stop being Supermum once again!

My aim is to post here once a week and share my latest lessons in ditching the Supermum cape. Wish me luck!