I am a mother to two lovely twin toddlers, however I have Ehlers-Danlos syndrome (EDS) and postural orthostatic tachycardia syndrome (POTS) and so itâs a slightly different story to when I raised my older children when my symptoms were much easier to manage.
⢠What is Ehlers-Danlos Syndrome?
⢠What Are Common Ehlers-Danlos Syndrome Symptoms?
There are days when I go to bed at the same time as the twins do, because I know itâs been like wading through treacle all day. If I donât rest up, then the next day will be a living hell. I often take a nap in the afternoon much like other mums do, except sometimes Iâve got my hand strapped up due to a subluxation in a joint in my fingers again.
Iâm happy to say that my children donât struggle because of my condition and we do get out and about all the time. They are happy, healthy and loved. The message I would like to share is that when I get bad days, I ask for support from those who can give it and this makes all the difference in the world. Iâm a positive psychologist and find that when I practice what I preach, I have twice the energy than I would have had otherwise.
If I could share three things that I do with other parents with rare diseases, it would be this:
1. Always check in with yourself when you get up. See what your body needs in the way of fuel, and give yourself whatever it needs. For me thatâs often porridge with fruit, and I eat my breakfast as the boys eat theirs.
2. Practice loving kindness on yourself. Be accommodating of things you canât manage and forgive yourself if you canât manage the washing up and instead plump for a nap.
3. Ask for help when you need it, donât wait until tiredness has you on your knees. Iâve put respite twice a week into the equation for my boys now, for a little me time. This makes so much difference. I use that time to either catch up on housework or just go and have coffee with friends.
Thinkstock Image By:Â NolanWynne