Jenny I think I’m going through a bit of a “kids growing up” crisis. My son is now 18 years old and acting like the young adult that he is – going out a lot with his friends and then spending any time that is in the house in his bedroom. My 15-year-old daughter is similar – she’s always been a massive help to me, but as she is growing older, I can see that she feels frustrated by the extra support that I require as someone with advanced MS, and would rather be doing her own thing.
This means that I’m spending a lot of my spare time thinking about the past, not just about the children and how suddenly they seem to have grown up, but also about how much things have changed for me, too. The kids have (not unexpectedly) lost a lot of their innocence as they’ve grown up, and, of course, that’s normal. But I think I’ve lost some of my innocence too – I spent years and years not worried about my MS as I had very few symptoms and relapses. Even when things started to go downhill, I still (naively) didn’t think too much about the future, and how my life would look after living with Multiple Sclerosis for over 30 years.
Who am I Now– Outside of Parenting?
So what has changed? To be honest, I’m not sure. I’m guessing that it’s something that every parent does, as their children grow up – think about the past and how things have changed. I have every hope and wish that my children will continue to grow in independence and happiness, and do whatever it is that they want to do in life. That doesn’t mean I’m finding it easy to let go, though! Parenting is such a massive part of me, sometimes I feel it’s the only part of me that I can continue to do well. But the kids will leave home to attend college, to start a new job or just start their independent lives away from home. What will I be then? I keep reading about children leaving the nest (I obviously have a parenting algorithm on my Facebook!) and then the mum using that time to find out who she is, outside of being a parent.
I used to be crafter, making my children crochet blankets and handmade advent calendars, encouraging them to make necklaces from painted pasta shapes and making home-made Play-Doh. I used to be a runner, a regular exerciser, someone who went out with friends and danced, someone who would take on physical challenges for charity, such as my skydive from 15,000 feet.
But not only are my children not into home-made Play-Doh now, my developing symptoms – including hand weakness, and difficulty standing up – means that I struggle too. I spend so much time on Pinterest, ‘pinning’ crochet tutorials I know I will never use because my hands are crap now . Exercise videos for over 40s that I can’t physically do keep showing up on my social media, mocking me. I physically struggle now with previous favourite past times, such as spending time in the garden and enjoying yoga.
Who am I Now – If I Can’t Have the Same Hobbies?
So who am I, if I’m not the Jen who has these hobbies? I’ve started reading books on my Kindle so I don’t have to struggle holding real books open with weak hands. Audiobooks are also my friend. I often talk about my love of meditation, which I’m still able to do to support my mental health. However, the loss of my hobbies and abilities are not just disabling for my physical health, but also for my mental health. I feel good for doing things to help support my MS health – eg exercise to try and remain as mobile as possible, or cooking healthy meals – so when the ability to do that stops, I feel a bit lost.
Who you are, your roles in life (parent, wife, worker, daughter, sister and friend), and the hobbies and interests that you have make you the person that you are. When you live with a chronic illness like Multiple Sclerosis, it’s not only a case of what you go through physically that can change, but also thoughts and feelings about yourself, and who you are, if you can’t be who you were previously. You can adapt, of course – my friend recently told me about a contraption that holds your Kindle for you, thus saving your hands – but there aren’t replacements for everything. Surprisingly to me, I really miss getting out of breath through running. Now, I feel out of breath when climbing the stairs at home – it’s not quite the same as the heart-pumping exercise that I miss though.
When you live with a #chronicillness like #MultipleSclerosis, it's not only a case of what you go through physically that can change, but also thoughts and feelings about yourself, and who you are, if you can't be who you were… Share on X***
So I suppose at the moment I’m going through that – trying to find out who I am, despite my physical limitations and the fatigue that impacts on my ability to stay motivated.
I’d love to hear if you’ve been through the same?
‘Til next time,
