People say the strangest things when you first have a serious illness.
Haven’t we all been promised the earth by those who matter (I’ll be there, just ask). And the moon and sun.
It must be bad?
However, with The Teenager having limited contact with his dad this year (not my choice), raising him has been tough at times, but infinitely rewarding.
Since MS crashed into our lives in 2011, we’ve both altered our perceptions immeasurably. Gone were the days when I was the parent who did everything. I now needed help.
Thankfully, my friends were on hand. We got through that dreadful time and came through the other side older and wiser.
And now The Teenager is on the threshold of 18.
As in common with any parent of a teenager, I am still failing. Of course. And he has had more than his fair share of challenges – as the single child of a single parent with a serious illness, he has had no one to share the long evenings (and my MS) with. If you don’t count the yells coming from his bedroom, when he has ten kids in there, all playing the same game.
I’ve been reduced to a cash-dispenser and provider of food. And that’s fine. It’s not the fish fingers that worry me, it’s the MS symptoms and how to work them around an Exploring Teenager.
Fatigue. A problem. Before sixth form, I set an alarm, dossing on the sofa and waking up in time for him to come back from school. It’s not so easy now he’s doing his A Levels. He returns at odd hours, shocked at me sleeping.
Nerve pain. A problem. I’m useless after 5pm. I walk funny. I could be seen as embarrassing.
Speech. My very first symptom. I still get tangled up in English when I’m tired, speaking a mish-mash of languages, the hangover of being tri-lingual.
So how do we live now? Precariously. We are forever on watch for the next relapse. I work, study and look after our house and The Teenager. I am trying my very best but the best is often not enough.
I remember saying, back in 2011, that all I wanted was to get The Teenager to University.
I might just manage it.
From an ms outsider’s viewpoint, all things considered, I think you’ve done very well.
Thank you very much!
I think you do amazingly well and underestimate yourself ! Do you not think the alemtuzumab has been as successful as you had wished ? I do not have a teenager but 3 very needy cats with varying degrees of illness, spend half my life at the vets and medicating them. I am 15-20 yrs post diagnosis and SP and waiting to start alemtuzumab but don’t really have any expectations regarding my current health situation but it would be nice to slow things down a bit. Keep on doing as you are and give yourself a big pat on the back from time to time xx
I totally think Alemtuzumab has given me precious breathing space over the last four years. I dread to think where I would be without it!
It’s just, having been so tired over the last few weeks, it’s getting me down that I’m just ticking over at the moment 🙁
I really hope you get the treatment! It certainly slows things down.
You are doing a great job. Sounds like you are your biggest critic!! You will get him to Uni and beyond …I hear everything you are saying and can relate to some of it. It’s not easy but you’ll get there. That’s what I keep telling myself anyway?
I’m definitely my biggest critic!! Sometimes it’s hard to be a single parent, but especially so with MS chucked in for good measure!
Just hang on in even if its only by one fingernail. It will all be worthwhi,e when you look back and The Teenager will appreciate it
You’re absolutely right. I was slumped on the sofa today after work when The Teenager came back from a driving lesson – the best ever he said. I felt privileged that I was able to be there, mid-afternoon, to hear his excitement. Every cloud!
I couldn’t have written this any better – and you are a photocopy of my life!
Thank you so much! Great to meet you 🙂