Gratitude Turns What We Have Into Enough

Thursday 30 June 2022

We are half way through 2022 already and it is most certainly an emotional time for me this year. My younger son is graduating from nursery and starts primary school in August. My elder son goes into his third year of primary school and the same day my youngest starts primary school, my nephew starts high school. A lot of reminiscing, reflection and growth is taking place all around.

The summer holidays can be the time of year that many parents find the most stressful; trying to balance their normal day-to-day life with children out of school, childcare or nursery for seven weeks is daunting but when you’re a parent with chronic illness, the stress, pressure and guilt is tenfold.

When I was younger, I wasn’t one of those kids that went abroad or on any big holidays with my family; my mother was a single mother of three and it just wasn’t something that we could do. I made my own fun most of the time as I wasn’t very social when I was younger either, due to my family circumstances, but in all honesty, I preferred it that way. I didn’t have to worry about what I was saying, what I was wearing, what other kids were doing that would make me feel even more bizarre in comparison; it was time I could just be myself.

We sometimes went on day trips to local beaches, like St Andrew’s or Burntisland on the Fife Coast in Scotland, or many of us from our street would get together – parents, teens, kids and even my granny –  and go for a walk up the Ochil Hills, which were also local to us. You would more than likely find me in my bedroom, listening to music, making mixed tapes, reading books, writing stories or out in our garden playing ‘Swing ball’. When I was around thirteen I started travelling on my own to London on the train to stay with my parent who lived there at the time. I would do a day or two of the typical sightseeing in London, I loved the Sherlock Holmes Museum in particular, but most of that was again more the same in a different place. It might seem sad to some but my favourite childhood memories involve me lying on my bed with my feet up on the wall, pillows behind me, watching the clouds out of my window while listening to Otis Redding, Lynyrd Skynyrd or Hanson. It made me happy, happier still when I got to do it with my rabbit lying with me or better yet, a dog.

I wanted to give my boys experiences that I have never had and even though they are still young, currently four and six, every holiday time that comes around I feel ‘Mum Guilt’ the strongest. We haven’t been on big family holidays yet, we haven’t the financial means, but also, my elder son and husband have Autism Spectrum Disorder so travelling anywhere needs weeks, sometimes months, of precise preparation. Taking this into account as well as the fact that I have several chronic illnesses, it can be a challenging time to navigate.

Being a parent with chronic illness is not for the faint of heart. I know I’m so fortunate to have the family I have and I’m so grateful for them every single day but our daily life is no picnic, it takes a lot of hard work and energy to make sure everyone’s needs are met. I have, however, in the last six years of being a chronically ill parent, learned that holidays are for making memories and that can still be done without having to use up limited energy or financially straining yourself. I’ll break it down into sections as I know ability ranges with chronic illness but as always, I try to cater across the chronic illness spectrum.

 

Low energy activities that are still full of fun.

  1. Scavenger hunts – You can do A–Z indoor hunts, themed hunts and even cater for all age ranges. There are a lot of templates online that are really simple to download and print, especially on Pinterest, and it means little energy is needed for the parent but it keeps the kids engaged and active and burns off some energy all at once.
  2. Forts – My boys love making their own forts in the living room or their bedroom. Let them have blankets, bedding, some pegs etc. and they can create a fun space to read or play with toys for hours. If you are able to, go in for a visit for a little while, even take your own pillow and blanket and get comfortable.
  3. Old-school movie marathons – This is understandably a bit trickier with very young kids; however, it is a great way to spend time with the kids, have some nice treats or, as we do sometimes, have pre-cut fruit and carrot batons and cuddle up together.
  4. Indoor tea party or picnic – A firm favourite with my boys since they were very young. We clear a space in the living room, put down a duvet or blanket and some cushions and we have some snacks and chat together. Their favourite toys can also be guests. If you can take it out to the garden it adds to the fun, but they will appreciate your presence no matter what.
  5. Family picture time – Gather up some old family photos, whether physical or on computer, and tell the stories behind the photos. If you are able, let the kids pick some of their favourites to make their own photo albums or scrapbooks to add to the sentiment and fun.
  6. Crafting – If my boys could, they would do a craft project every day. You can get a lot of easy crafting ideas online, again from Pinterest etc., and supermarkets have a lot of very affordable crafting supplies. Let them make cards for family members and get them to send them off as a nice gesture and it also lets them re-use and recycle items such as jars, cereal boxes and toilet roll tubes too.
  7. Get arty – Pull out your colouring books together, draw pictures, make up drawing games, e.g. pick six topics and each draw the first thing that comes to mind. It’s a really simple way to keep them for getting bored and you can do it even if you need to be in bed.
  8. Board games and puzzles – Board games, card games and puzzles have made the last few years of the pandemic good for family time and, in all honesty, date night too. If you are able and have the ability, creating your own games can be a lot of fun but if you’re looking for something more straightforward, then most of the major supermarkets and many online retailers have their own versions of games for an affordable price. There are also a lot of online activities that kids can get involved in that can also benefit and educate them on subjects like helping and caring for nature through The Royal Society for the Protection of Birds.
  9. Take it outside – If you have garden space, there are a lot of really interesting things that can be done in the garden for kids – sand boxes, mud kitchens, growing vegetables and their own flowers, making an insect hotel, making fruit kebabs for birds, doing a wildlife survey, charming butterflies, digging for insects, or just simply walking or running barefoot in the grass.
  10. Be reporters – Let each family member pick a topic that they are interested in, such as transport, animals, space, and find as much information as you can about the subject. Save and print pictures and make a scrapbook with all the collated information together.
 

Ideas that require more activity.

These ideas are for those who are able; however, they are close to home, should you need it.

  1. Go to your local library – Libraries are such an underrated place in our lives these days and it really saddens me. Not only is reading a great pastime for all ages, your local library will usually always have a lot of varied activities for kids going on all through the summer.
  2. Be a tourist in your own town – There is usually a plethora of things to do, no matter where you live, in your own town or within a short distance. You can try going fruit picking or to local markets. Visit ‘must sees’ in your area: many historic or tourist sites will give offers during summer for free entry for local residents. If you have animal sanctuaries or animal protection programmes close by, try and choose these over zoos and wildlife parks. You can go to museums, cinemas or theme parks in your area, or if you are lucky, as I am, to live with an abundance of nature around, explore woodlands and botanical gardens or have a picnic in a local park.
  3. Go on a mini adventure – Plan to go a little further afield and visit wildlife reserves, woodlands you’ve never been to or lochs and lakes nearby, or for more entertainment go to a drive-in movie, have fun and be silly with crazy miniature golf, or make it a day of randomness in which you have no destination, you just know you’re going to take a bus, train or drive and see where the day takes you. If this is a little too out of your comfort zone, try camping, whether it be in your back yard or further from home, or keep it a simple adventure and go and watch a sunset or sunrise together.
  4. Try geocaching – Geocaching is a great way to turn an outdoor walk into an adventure. You just need a device that has GPS enabled, such as your phone, and treasure trinkets for swapping, which can be little packets of gummies, badges, pencils or even painted stones and rocks. Go Here where you can get the co-ordinates for a geocache near you or alternatively you can download an app for your smartphone.
 

If you are in a position to take a trip or go abroad, here are my main tips to allow for a better holiday so you can enjoy your time with the kids without suffering afterwards.

Preparation, preparation, preparation. For chronically ill people, making sure you are organised well in advance gives you the time to allow for days where you may not be up to doing organising or packing etc.
Think about your destination and transportation in regards to your needs:
How many hours of travelling can you handle physically?
What climates and temperatures could affect your health?
Is the destination and accommodation easily accessible?
How will you get to your destination?

Check your insurance. Make sure your insurance has a cancellation policy that fits your needs, just in case it is needed.

Lists are your friend. Make sure you have a list of what you need to pack and include all your medications and things that you need to make the holiday as enjoyable as possible. An ‘In case of emergency’ list with your medical requirements, medications, helpful contact information and possible allergies is best to have; hopefully you won’t need to use it, but it could be a life saver if you do.

Keep it simple. Choose luggage that has wheels.

Don’t forget travel essentials. Remember to include anything that will make your journey easier for you to cope with. A support pillow for your neck, comfortable shoes, heat packs or ear plugs and eye masks can all make a difference. If possible, remember to wear comfortable clothing and stay comfortable temperature-wise; sometimes planes can be a bit chilly and you may need extra layers, whereas long journeys in a car or bus may not need as many.

Keep your blood flowing. Sitting down for hours on end isn’t great for your body: your blood and lymph flow can become restricted, which can cause worsened muscle pain and headaches. Try some Seated Yoga or stretching your legs as often as possible at services, or if you are able, you could buy some Compression Socks.

The key rules that are truly imperative for someone with chronic illness are always set realistic expectations and manage your energy wisely. No matter what stage of illness you are at, please remember that you are enough, you are doing enough and the most important thing to your children is your presence. Even though my boys are still young and we have many years of memories ahead for the making, my eldest talks about the smallest things like they are the greatest things in the world because they meant so much to him. Our days spent by the lochside, blowing bubbles and chasing them in the garden, or letting them stay up later to go and watch a sunset are some of our most valued memories to date.

 

Thank you for taking the time to read this month’s blog post for M.E. Support. Please do like and share this post and comment about your experience on the Facebook Page. You can read previous posts anytime on the M.E. Support Blog.

In July's edition of the blog, I will be exploring the effects of creativity on chronic illness and talking to Sara Watkins of Spoonie Press. If you would like to read more of my work outside M.E. Support or listen to my podcast, you can find it all at my website Made You Co.