Chronic Fatigue Fibromyalgia and Parenting

Being a mother who is chronically fatigued and in pain, I make a special effort to spend quality time with my daughter Sylvia every day. We call our time together “You and me time”. This usually takes place in my room on the bed.

Sometimes it is difficult, especially when Sylvia asks me to build a den or plan a treasure hunt around the house. I simply don’t have the energy and strength. It hurts inside and it would be easy to get caught up in the guilty feelings of being a less physically able mother. Feeling guilty would just drain my energy further. I have no time for this!

Rather than focusing on the activities that I can’t do with Sylvia or the activities that would worsen my symptoms, I focus on the things we can do together. I’ve developed several techniques or strategies to make “You and me time” a success and am finding ways to adapt activities to suit us both.

A Relaxing Environment

I make sure the bedroom has a relaxing and welcoming environment. Sylvia loves to spend time in my room and has told me it is relaxing and peaceful. This is done by appealing to her senses, sight, smell and sound. I make sure the bedroom has a relaxing and welcoming environment. Sylvia loves to spend time in my room and has told me it is relaxing and peaceful. This is done by appealing to her senses, sight, smell and sound.

Sight

I have two bedspreads (from Ikea) which I alternate on the bed. One is the blue and grey patchwork Fraken and the second one the floral Rosalie bedspread. The simple task of straightening the bedspread and pillows makes a huge difference to the feel of the room.

CFS/MEI try to keep the bedroom clutter free. This is no so easy being married to a clutter-bug, being unwell and having a child however I have a box at the back of the door and place everything that needs to go away into the box. John then helps me to sort it when we have time.

Smell

Each day I make sure the room is aired. I recently purchased a diffuser which smells delicious and a small bottle of room spray. These were not at all expensive but make a huge difference and add to the relaxing environment I am trying to create.

CFS/MESound

Sylvia and I often play music in the room. This is often soft and peaceful classical music, gospel music or pop. Sylvia loves to dance and will always have a boogie as we play the latest hits. Currently she loves dancing to Taylor Swift’s Shake it off, Rita Ora;s I will never let you down and Uptown Funk by Bruno Mars.

Preparation

The second thing I do to make “You and me time” a success is prepare. Having activity ideas, snacks and materials close at hand helps me to conserve energy. This also makes the question… “what are we going to do?” exciting and adds to the feeling that there is plenty we can do without walking around and mummy getting dizzy.

The Project Box

Sylvia and I have created a project box. It is a simple shoe box kept in her room full of stationary, pens, paper, scissors and glue etc. When Sylvia wants to draw or create something she simply brings the box into the room and we get on with the activity.

The Snack Box

At the start of each week, I fill a container with snacks. This can be anything from fruit and rice crackers, to crisps, fruit bars and plain milk biscuits. (We tend to avoid high sugar or chocolate covered items and look for the healthier processed snacks). The container is great for giving Sylvia snacks and saves me going up and down the stairs.

Our Reading Pile

Every few weeks John and Sylvia go to the library to choose new books to read. Sylvia and I keep a pile of books in my room. We also have a little book and Sylvia records the title and author of each book we read. Sometimes I read to her and other times she reads out loud to me. Each time she reads 50 books, John makes her a certificate.
kids books
All these ideas and time saving techniques benefit me and Sylvia. They help us to use our time more wisely (and me to use my energy specifically with her..rather than using it to go up and down stairs or to walk around to find the things we need to use).
Before illness, I never really had to think about these things. It took very little effort to go get a book from the room, run downstairs to make a snack or set up and pack away a learning activity. I used to do this all day as a teacher. Now I have to manage my energy levels very carefully. It is something that is new to me and something I am still learning to do.

“You and me time” has become very special for me and Sylvia. It has become a routine part of daily life. The ways and methods by which things are done may be different but the happiness felt as we spend time together is still the same.
Angela xx