Parenting with Myalgic Encephalomyelitis

Monday 31 July 2017

In this month’s blog post, M.E. Support Facebook Page Administrator Kelly Ledder talks about life as a busy M.E. parent, and shares her advice on managing the summer holidays. 

When Louise asked if I would like to contribute a blog post, I didn’t really know where to begin; I wanted to try and offer something that would be of help to others so I looked at myself and asked the question, ‘What help did I look for?’

When I found M.E. Support I was struggling, like most, to understand the condition. My only support network then was Louise, M.E. Support and my mum, who suffers herself from Fibromyalgia. Today that support network remains the same apart from a small Facebook group that Louise introduced me to, as I found I needed additional support as a parent. Parents with M.E./CFS & Fibro is such a lovely group for support; it’s a place I truly feel I can be honest about how I feel and am managing my condition.

Today I sit here dreading the summer holidays as I think about the many weeks ahead that I have of entertaining a 6-year-old and an 18-month-old on my own. Anxiety has gone into overdrive and with the long haul ahead of me, I have tried to do the absolute minimum. I long to have a lie-in past 7am and to actually feel as if I have had a restful sleep.

Of course, this isn’t the first time I have had to deal with entertaining the children, but last year I coped better as I wasn’t having to go into work. Now I have a whole day ahead of me then a relatively manual job to do in the evening.

So with that in mind, I decided to write this post on how I plan to manage the summer holidays. 

What could I do to make my life easier?

Firstly, I needed to plan.

I scoured the internet to see what activities/attractions we could do during the holidays. I planned the activities that would be more physically draining (such as a visit to the zoo) on days that I would not be working, to allow my body to rest in the evenings and have the support of my husband for parenting.

  • Cinema trips
  • Softplay
  • Play scheme
  • Craft activities at home
  • Home cinema days
  • National Trust/Zoo days out


The school holidays can also be pretty expensive; fortunately, we have a National Trust membership as well as annual zoo membership, so that will allow us to spend half days out without feeling pressure to stay out all day and over exert myself.

I looked for cinema mornings to make the visits cheaper and have also asked family to come and babysit my daughter as not to upset her routine and to also make it a little easier, as she is not one to sit through a film for 90 minutes.

Check out your local authorities to see if they are running any events. Our local council offers a play scheme: this gives you a few free hours and also allows the children to get some exercise and meet up with their friends during the holidays. Many local libraries also put on events such as reading sessions or crafting events, which will keep them entertained for an hour or so and will get you out of the house.

I have planned meals ahead and listed what would need to be bought so that I could do online shops and not find myself having to visit the shops with both children.

I looked at the household tasks that would still need to be completed, such as the washing and tidying up, and set about a reward chart for my son to assist me with these tasks. Some things can be put off but the washing would still need to be done and the toys tidied up each day. You can quite easily find lists of chores that are age appropriate, such as An Age-by-Age Guide to Appropriate Chores for Children, and rewards don’t have to be great, but enough to encourage them to help out.

I also plan to explain to my son a little more about my condition as he is now approaching 7 and has started to ask questions as to why I am so tired all the time and why I can’t do certain things. The ME Association has a useful Leaflet which helps children understand the illness.

I am hoping that by planning and having these things prepared, it will lead to a stress-free summer.

It’s also important to remember that you need to recharge: being a parent is draining at the best of times, but when you are parenting 24/7 with a chronic illness it’s a whole new level. Accept help when you can and have a look at how you can make your life easier. Make sure you have rest times planned in, especially on days where you have maybe over-exerted yourself a little more than usual.

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News

4 Jun 2019
Keyrings Back In Stock
31 May 2019
Unrest Film Review
30 Apr 2019
Biomarker for 'CFS' identified
13 Apr 2019
NIH Conference Videos
13 Apr 2019
CFS/ME National Services Survey
6 Apr 2019
Forward-ME Update
6 Apr 2019
Phase 3 Rituximab Trial
1 Apr 2019
Anniversary Statement
29 Mar 2019
M.E. Organisations
26 Jan 2019
House of Commons M.E. Debate

 
 
 

News

4 Jun 2019
Keyrings Back In Stock
31 May 2019
Unrest Film Review
30 Apr 2019
Biomarker for 'CFS' identified
13 Apr 2019
NIH Conference Videos
13 Apr 2019
CFS/ME National Services Survey
6 Apr 2019
Forward-ME Update
6 Apr 2019
Phase 3 Rituximab Trial
1 Apr 2019
Anniversary Statement
29 Mar 2019
M.E. Organisations
26 Jan 2019
House of Commons M.E. Debate