Parenting is a challenge whatever your situation so when you throw a chronic illness like FND into the mix, this challenge increases ten-fold. If along with the daily emotional ups and downs (yours and theirs!), the arguments about homework, the packed lunches, tantrums and chores, you have to cope with an unpredictable illness, it can seem like a daunting and overwhelming prospect.
The most important step is to be open and honest with those people who you and your offspring will be seeing on a daily basis. Talk to the school about any difficulties you are having, they are not there to judge and can often offer and provide additional support. Talk to family and friends about things you find hard to do- in the same way that you might offer support to a friend in need, others may be sat in the background wanting to help but not knowing how.
After speaking with several parents dealing with their chronic illness and bringing up their children, we put together some ‘tips’ for those who may be feeling a little lost.
Listen to your body
It can be hard to recognise when we need to stop, often adrenaline takes us through to the end of a task and its only when we stop that we realise how tired we are and how much it has taken out of you. Be in tune with your body, there are warning signs that you can learn to register. It might be your legs starting to ache or it may be a brain fog descending, but whatever it is, the important thing to remember is to stop before the symptom sets in.
Know your limits
Once you have learned to listen to your body, you can begin to understand how much you can or can’t take on. Never be afraid to say NO. You may want to be all things to all people but, even if you were fighting fit, you physically cannot . If you have a bad day or you can predict difficulties ahead, call in the cavalry. Ask friends, family or neighbours if they could help with smaller tasks in order to ease the pressure of you to a certain extent. Try not to rely too heavily on older children, though they are teenagers, they are still young and will become easily overwhelmed between coping with school and home. If you ask your older children for assistance, make sure that they know how much they are appreciated.
Try to find the positives
It can be hard to find the plus points on a bad day but it is so important to at least look for them and not dwell on the negatives. Keep a diary or a note in your phone and record three things that made you smile today. It can be as simple as hearing a bird singing to managing a walk without mobility aids, it’s the little daily victories that you need to focus on.
Be kind to yourself
When you have limited energy, it can seem selfish to direct some of that towards self care and not expend it all on your children and partner- it is not. If you do not take care of yourself in the smallest ways, you will be of no use to anyone in the long run. Try to pencil in time a few times a week for gentle exercise, relaxation, reading a book or just talking with friends, if you are happy and relaxed, the atmosphere at home will follow suit.
Talk, talk, talk
Speak to you GP about the possibility of seeing a member of your practice’s mental health team. There is no shame in asking for guidance from a counsellor, therapist, psychologist etc. They are there to share advice and strategies to help reduce stress and negative behaviour and associations with your condition.
Predict the unpredictable
One of the hardest things of living with a chronic illness such as FND, is that you don’t know how you will feel from one day to the next. This is always going to play on your mind when making future arrangements for play dates, parents evenings, sports days etc. but you can plan for all eventualities. If you know that you have an event coming up, make sure you have a backup plan (is there someone else who can pick the children up? can the school email you with a report if you can’t make it to parents evening?).
Change your expectations and learn to navigate your “new normal.”
This is easier said than done. Your vision of family life may be based on past ideas and hopes, and this may need to be dramatically altered to allow for having an unpredictable illness. This is not to say that you should give up on your hopes and dreams, but continually dwelling on the thought pattern of wondering ‘what would have my life been like if wasn’t chronically ill?’ can prevent you from seeing the joy in the present moments that you do have with your family. Your children live in the present and need you to be present with them, they do not have your preconceptions of childhood and will be taking their emotional cues from you. Allow yourself time for sadness at the loss of what you pictured, and then remind yourself of the positives of the current situation (e.g.-were you working but had to stop? Instead of dwelling on the negative thoughts of stopping work, try to see the positives in having more time to spend with your family)
Remember that you are not alone in this. There are thousands of parents up and down the country who are fighting the same battles as you. Find local support groups or communities on Facebook where you can share your experiences and tips on how to cope.
For further help and proof that you're not alone, read this article on The Mighty ‘To the Mom Living with Chronic Illness Who Feels Inadequate’ by Sharilynn Battaglia in which she talks about the things she wishes she could tell her younger self.