Parenting with a chronic illness

Parenting is one of the hardest 'jobs' you can ever do.  Parents up and down the country post blogs everyday to bemoan about how tough they have it, how tired they are, how they struggle with daily life.

Now imagine having a chronic illness as well.  An illness which is unpredictable and changes day after day.  That's what I have to deal with.

Some might say that becoming a parent when you have a chronic illness is pure selfishness on the parents part.  And some days I wonder if that is true.  But in reality, if I hadn't made the decision to become a parent, part of me would always be missing.  My daughter has been an absolute blessing and helps me to get through every day.

It's been 10 years since I was diagnosed with ME (Myalgic Encephalomyelitis), sometimes known as Chronic Fatigue Syndrome.  I had just turned 30 and recently come out of a long term relationship.  I had been reconnecting with my parents and had gone on a family holiday with them.  It occurred to me one day during a walk that I was unable to keep up with them.  Upon returning home I realised that there were other things that I was struggling with and the least amount of effort left me feeling really unwell. A few months after that I had what is known in the ME/CFS world as a crash.  I couldn't get out of bed, I couldn't walk, I couldn't look after myself.  It was the scariest experience of my life.  Luckily my amazing parents looked after me.  I moved in with them and they cared for me.  My mum even had to wash my hair as I couldn't lift my arms to do it myself.  I was in a severe phase and felt helpless.  Imagine having flu with aches, pains, lack of energy, brain fog, temperature changes, etc, etc.... now times that by 10.  That's what severe ME/CFS feels like.

Luckily for me I had some help with learning how to pace my activity and rest and found a way to cope with living on my own again.  I was able to work part time, although it was very hard.  Over the space of a few years I went from having severe ME/CFS to being in a mild to moderate phase (flu x2).  Although I still have setbacks, if I'm careful not to overdo things I can function pretty well on a day to day basis.

I had reached a fairly good place in my life and was now ready to move on.  I knew I wanted to become a mum, it had always been a life goal, but unfortunately it had never happened in my 20's because I had never met the right man.  Luckily for me I met my wonderful husband at just the right time in my life and after a few years together we became parents for the first time.

My daughter is now 2 and has made me smile every day since she was born.  Some days are amazing and I feel like a normal parent, but other days are tough.  My husband is great, he supports me as much as he can whilst working full time.  My parents are also great, they look after my daughter on the days when I am able to work and on the days when I feel too ill to manage on my own.  I do feel guilty every time I'm too ill to do things with my daughter, but I try to make up for it when I can.  I take her out regularly to parent and toddler groups so that she can play with other children.  We also have a lovely group of friends that we have met at these groups and we try to meet up with them as much as possible.

I've turned our lounge into a wonderful play area for my daughter and our patio doors lead onto a gated decking area with lots of toys, so my daughter is able to have free play inside or outside whenever she wants to.  She is a very happy girl and can play independently.  However I do try to play with her as much as I can, although often this involves me sitting on the sofa during the game.  We draw and read lots as she loves this.  She also really enjoys her dolls and dolls house, so we often play that together.  But on the days when I am feeling ill, we often just snuggle on the sofa watching a film or reading a book.

My daughter knows I love her because I tell her every day and give her cuddles and pay her attention all the time.  So, maybe I can't run around like some parents or stand for hours baking or some other fun activity, but I give my child all the love she needs, whilst making sure that I don't overdo it, because parenting is a 24/7 job and I want to be there whenever I'm needed.

Of course I'm scared that I may have a relapse and return to a severe phase.  But I can't dwell on that, I need to enjoy my life and make my daughter's life happy.  Knowing my limitations is key to managing and sometimes that means saying 'no, I can't do that'; but I've come to learn that is OK.  Having a chronic illness has made me into a better person, I've come to appreciate the little things in life much more than I used to.  And perhaps this in turn will help me be a better parent.

Potty Training

Potty training is quite frankly a minefield.... sometimes literally!  

I thought it would be easy, put your child on a potty and they promptly wee or poo as needed.  Hmm, OK maybe I wasn't that naive, but that would have been the ideal response in an ideal world!

We have been trying to practise every day since the weather got warmer.  Off come the clothes and nappy every day for a few hours, or as Lizzie calls it "Nudey girl time".  She then plays as normal, while we sit on the edge of our seats waiting to grab the potty and put her on it if she starts to wee.  Obviously we've had a few accidents and little puddles on the carpet, but do you think we've managed to get any in the actual potty...No!

For a while she refused to sit on the potty, so we decided to try the toilet instead.  She thought it was great and she climbed up and down on her own, with her special stool and seat.  She has done a poo on it, although I think that was a lucky catch.  But recently she's refusing to sit on the toilet, crying when I even mention it.  She nearly always comes into the toilet with me, but doesn't want a turn.  I don't push it, I don't want to put her off completely.

So, we've gone back to the potty after a little break from it.  She quite likes to sit on it at the moment, but still no wee.  It's amazing how long she can go without an accident.  She holds onto it until the nappy goes back on.  We even bought some little knickers for her to wear, to show her what a big girl she is now.  She loves them and they do help catch any accidents before the carpet gets ruined completely, so worth it I guess.

We'll keep practising and I guess she'll get the hang of it... after all you don't see many adults in nappies, so I guess we all learn eventually!

Sleeping

If there was an Olympic event for wriggling in bed, my toddler would be a gold medallist!

She starts off in her bed for a few hours, and some nights she sleeps in there nearly all night. But last night she crept into my side of the bed just after midnight. It's always my side, daddy never gets woken up.

Most of the time she just goes to sleep and I don't notice her, but some nights she just wriggles all the time!

Over the summer holiday when we're both off work we're going to work on sleeping in her own bed all night... Hopefully we'll get there.

Work / Life emotional balance

As a supply teacher I have good and bad days depending on the school I'm working in.  Most days I come home feeling tired, but satisfied that I've had a good day.  Today was not one of those days!

I only worked this afternoon, but the kids in the class I had were a nightmare.  The muggy weather had hyped them up and they were so loud.  The teacher had left vague plans, which always cause problems and the teaching assistant was inexperienced and quite frankly, useless.  I got through it somehow, by over praising the good kids and keeping my cool with the naughty ones.

Anyway my point is, a day like this at work has a knock on effect with my home life.  Not only did I feel exhausted when I got home, but I felt really upset.  All I wanted to do when I got home was to cry and lay in a dark room, the massive headache didn't help.

Luckily I have a wonderful husband and he cooked dinner and took our daughter to bed.  But I felt incredibly guilty that I was in such an emotionally negative mood, all because of work.  

In an ideal world, I'd be a stay at home mum, so that I could pour all my energy and emotions into raising my beautiful girl.  But it is not an ideal world and I need to work to earn some extra money, as so many of you do too.

So until I win the lottery or find another job with less stress, I will continue to share my energy and emotional state between a class of unruly kids, who just want their regular teacher to be there more, and my own child, who should come first, but unfortunately because of work doesn't always.

Caravan

We recently bought a second hand caravan for cheap holidays whilst my daughter is little. We had our first weekend away in it this weekend and it was great fun. My daughter loved it and didn't really want to come home (neither did I either!).

Some great outdoor fun was had, walking in the woods watching the rabbits play, playing on the climbing frame in the playground, filling up the water barrel, trying to put up the awning. Lots more to come on another trip hopefully.

Anyway the bit I found interesting was she slept brilliantly all night in her caravan bed. I know we were technically in the same room, rather than different rooms like at home. I so wish she could sleep in her own bed all night at home too, especially when I've got work the next day. She spent nearly all night sleeping with me last night! Think we might be sleeping in the caravan every night if it means I get a good nights sleep!!

2 year check

I had my daughter's two year check up with the health visitor last week. I had to fill out a four page questionnaire before I went about my daughter and all the things she can and can't do now. I was expecting the health visitor to go through it with me and discuss the areas she's behind in, but she merely glanced at it and said nothing... why did I bother filling it out?!

She then tested my daughter on some of the skills that were on the questionnaire. I did wonder at this point if she disbelieved what I'd written or just didn't read it. Luckily Lizzie did play ball... literally and figuratively!!

So then came the chat about food and how fussy Lizzie is. The health visitor then rambled off the standard  suggestions on how to get your child to eat, which we've already tried...
-Eat with your child so they have a model... tick!
-Give your child the same food as you... tick! (But she still won't eat it!)
-Encourage them to try one bite... tick! (She either refuses or spits it out!)
-Don't pressure your child or make them feel uncomfortable... tick! (But she's still not eating!)
-Give them an ice cube tray of snacks with new things and favourites... tick! (She'll eat her favourites and leave the rest!)
-Make the food look fun, create a picture... tick! (She'll smile and talk about it, then pick out her favourite bits!)

So new ideas suggested by the health visitor...
-Let your child go hungry occasionally, she'll start eating then... (Umm no, she'll just starve herself rather than try new things and isn't that a form of child abuse!)
-Bribe her with chocolate... tick! (We tried this one and she has tried a couple of new things this week. I won't count my chickens too soon though!)

The upside of the meeting was she was very impressed with Lizzie's speech and said she was advanced with this... Well done Lizzie!

And well done mummy for raising a "satisfactory" child.  You'd think they could come up with a better word than that wouldn't you?!

Well see you again in two years time health visitor... I'm off to buy some more chocolate buttons!!

First Post

So, blogging... thought I would give it a go!

Let's do introductions... I'm a 40 year old first time mum, with a 2 year old daughter.  And yes, we have discovered the terrible twos (More on that later)!  I've been married for 4 years, together for 7.  I'm currently working as a supply teacher, having quit my permanent job when my daughter was born, so I could spend more time with her.  I've also had a chronic illness for the last 10 years, ME/CFS, which unfortunately does impact my parenting at times.

Why blog you may ask?  Or not!  Well I decided that I need an outlet... preferably an anonymous one (so no real names will be used!), as sometimes we all need to vent or procrastinate.  Nobody is perfect especially a parent, as I'm sure you will discover if you continue reading....

No, my daughter does not sleep through the night.

No, my daughter does not eat a variety of food.

No, my daughter is not potty trained.

These and other issues are some that I hope to discuss in more detail.  Hopefully if you've got time between nappy changes, pulling food out of your hair, and tidying up the toy mountain, you can grab a cuppa and read along sometimes.