Putting Yourself First as a Spoonie Parent

The weather is finally cooling down, the summer is drawing to a close, and the kids have just left for their first day back to school yippee.  As a ‘spoonie parent’, with each year that goes past, I feel less and less organised and panic that I have left something out and that Alex and Ava will be going to school wearing holey shoes and unlabelled jumpers. Whether it’s due to us having more on our plates as the kids get older, or whether it is because of my MS making it difficult to keep organised, I’m not sure.  But I am pleased to say that they left for school today looking smart in their uniforms and with their bags all organised, so I can breathe a sigh of relief. Not least because back to school also means a bit more ‘me time’.

I’m not going to lie – I love being with the kids, but when they spend too much time together without something to amuse them, it is a recipe for ongoing arguing and household stress.  Not conducive to the chill out rest time that my MS body relies upon.

This was also the first time that I have spent the whole summer with the kids since they were babies; previously, I have been at work.  Now that has finished, due to my MS, I can safely say that spending a full day with kids is just as exhausting as a full day at work.  I am lucky that mine are old enough to amuse themselves if I need a nap now though, goodness knows what I would be like if they were still tiny.

Sometimes I think back to those pre-school days and reflect on how different I was; I could walk and had loads of energy to play all day with the kids, to go on long walks, days out and to do endless hours of crafting, baking and playdoughing with them.  As they become more independent, things are easier in some respects, but sometimes I worry that I feel so rubbish all the time that I don’t truly appreciate it or them, as much as I should.  I am very conscious that this will be a big year for both of them.  I am due to go away for my MS treatment in a few weeks and this will mean that I won’t see them for a time as I will need to be in a hospital in isolation.  They’ll be dealing not just with their school work, their friendships and their after-school activities, but also a very poorly mum.

The term ‘parenting’ should be synonymous with ‘worry’ and ‘guilt’.  Who doesn’t worry about their kids and what they might be up to when you can’t see them?  Who doesn’t feel guilty for letting them have too long on the Xbox or feeding them fish fingers and chips for the 2nd day running? Those of us with chronic illnesses have all those worries and guilts, but also others associated with our illness and the effect that it may have on our children.

And it is so important to try and reduce that mental load by putting ourselves first for a bit. Even if this just means a quick half an hour after the kids are in bed.

Nurture Ourselves

I have been a spoonie parent for about 6 years now since my Multiple Sclerosis symptoms became permanent and progressive.  As each year goes by and the kids get older I realise more and more that parenting doesn’t get easier as kids age, it just changes.  It becomes even more emotional, as you watch your children go through experiences that you wish you could shield them from. You feel frustrated when their opinions don’t always match yours, or they challenge your authority.  The sensible part of me tells myself that the kids are just growing up, becoming their own people with their own views and that this should be celebrated.  But that doesn’t mean that it isn’t bloody annoying and stressful at times!

The need to nurture becomes paramount.  Everyone needs to attend to themselves, let alone someone with a chronic illness.  Caring for yourself and making the effort to keep yourself physically well and mentally strong can only help when it comes to parenting.

How can we do this?  By putting time aside for you.  I’m not working at the moment, but I have set myself various mental challenges to keep my brain ticking: learning German, taking part in an online expressive writing course and reading a certain number of books per month.  Due to my fatigue levels, however, I don’t always do these every day.

When I talk about nurturing, I don’t necessarily mean learning new skills, I mean anything that just makes you feel good:

• Going back to bed

• Having a cup of tea and a massive slice of cake

• Painting your toenails

• Going out for a walk

• Doing an exercise class

• Listening to an audiobook

• Making a playlist of songs

• Painting a picture

• Writing in a bullet journal

• Meditating

• Watching Netflix

• Journalling

• Calling a friend

• Catching up with family

• Napping

• Baking

• Crocheting or knitting

• Reading a magazine

• Doing a facemask

• Having a long bubble bath

• Surfing the web

I am a big believer that putting yourself first regularly is the first step to good mental health: it is a complete non-negotiable in my life.  I feel that it helps me to feel more able to deal with the meltdowns that my kids sometimes have and also to deal with the stress associated with my illness in a positive way.  I can’t predict how my health and life will end up but I can make sure that I am having a nice time whilst living it.  Being a parent is hard and being a spoonie parent is really hard.  Let’s make sure that our mental health and self-care are considered.

So, off to school we go.  In hindsight, the summer has gone ever so quickly and I wish that I had spent a couple more days out with the kids doing things that they love, rather than hanging around the house.   But it’s easy to have regrets; instead, I should be concentrating on the fact that the weather was gorgeous, we had a lovely few days in London and I was able to hang out with my family.  Plus the fact that back to school means that I now have the chance to do my yoga in peace, rather than with kids continually saying, “Mum….”

Till next time,