Tag Archives: The Teenager

Life And Other Messy Things

It’s been a dreadful five months, but we need to begin to look forward.

Grief has overwhelmed me, MS has hitched a ride on the back of it and shaken me to the core and as a small family, we have to gather ourselves together and celebrate life in all it’s glory.

No one is ever forgotten, they are carried with us throughout life – my dad, who died in 1978, my brother more recently and many others in between.

The best way to honour their memory and legacy is to aspire to be the very best within our capabilities and more importantly, to do no harm.

All shocks have repercussions, good and bad; MS forced me and The Teenager to create a whole new life – new job, new mum, new identity. We got through it, wobbles along the way, but we did it. I’m happy to say that he is thriving at University and I am beyond proud of all he has achieved.

Grief, seismic shifts and time passing creates a re-evaluation – someone came back in to my life after a long absence. There is never a good time to meet anyone and people always told me it would be at the worst possible time. They were right, but it worked.

It’s not serious – they would be the first to say that – but it works, just now, for us.

I have nothing to ‘admit to’, or ‘come clean about’. It just is. I just love this person.

When you attend your sibling’s funeral, decades before you really should, life shifts and reorganises itself. What seemed important is less so, and vice versa.

Life is a continual series of lessons, the most important of which is, you never know what someone else is going through. Be kind to each other, be aware that someone so happy and vibrant is just as likely to be as depressed as the person who ‘looks depressed’.

I’ve confirmed on Twitter these last few weeks and months that I have never found it to be anything less than supportive. Perhaps I’m lucky, but having seen me through MS, The Teenager, Grief and beyond, I do think it can be a force for good.

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Honestly? MS, Again and Again and Again

Just when I think I’m doing a pretty decent job of faking it with MS, I discover that no matter how hard I try, it will always make its presence known.

When I say ‘faking it’, I don’t mean denying I have this illness, it just means that I try to hide stuff from the people who mean the most to me.

Yesterday, this hit home in an unexpected way; I had been at work and once back home, I put the fan on to cool down the house.

When The Teenager came home, he found me semi-relaxed, reading a book and being blasted by a formidable Arctic chill. So what followed was surprising:

‘You ok?’

‘I’m great! Fab fan! You ok?’

‘God, it’s depressing.’

Hmm, did he mean something had happened when he was out? Or was it the state of the world? Politics? No.

‘I just feel so sad that you have to sit in front of that thing to feel ok. It’s depressing.’

I tried to explain it was all good, I felt fine, I was just dealing with a symptom.

‘Still crap.’

I understand where he’s coming from – he’s had a fair old journey as the child of a single parent with MS which hit right when he started high school. He knows my MS foibles inside-out, but no matter how much he’s witnessed over the years, I’ve never relied on him as I wanted him to blossom and grow despite MS. The same wish I have for myself, I guess.

Of course, he will always have this hanging over him, as I am his main parent. He reads too much on the internet and stores it up until it explodes in fear and anxiety. I will always provide a safe harbour for him to come back to when he needs to.

I guess I am the Great Pretender. I refuse most offers of help, I push myself to the point of exhaustion and in some ways, I gain a lot of satisfaction by doing that and stuff the consequences. Yet within myself, I have somewhat calibrated MS to suit me;¬†I go to work when I’m at my best MS-wise, I catch up on paperwork when I know I can engage my brain, I write randomly, whenever I can and I now accept that when I can’t, I can’t. No matter how frustrating.

When that happens, I’m stuck on the sofa, or in bed. Lying flat in a cool bed sometimes brings more relief than any meds. I realise my life has shrunk, but in a bizarre way it’s also grown. Without MS, I could still be in a dead-end job with a dead-end partner, cycling through life with no real care or direction. Life has been honed down towards what is most important, and that’s been a huge learning curve. I’ve discarded all thoughts of what I should be doing, could be doing, ought to be doing. I now choose.

So yes, MS happened. It’s not the best, it never will be, but I will try for as long as I can to continue to be the best parent I can, above everything. If I could only reassure The Teenager more, I would be happy forever.

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Less Can Sometimes Mean A Whole Lot More

I lived with a millionaire for four years.

I know, weird, huh?

Shortly before that, I was a cash-strapped au-pair in Austria. On pay-day (£35 a week), I schlepped to the supermarket on the main square and bought a single vanilla yoghurt.

It was the most delicious treat in the world and made the endless toddler-wrangling of the previous seven days all the more worthwhile.

When I was living with my new partner, I went to the same supermarket and bought five and ate them all in one go.

They were awful. The taste had gone. When I could have as many as I wanted, I didn’t want them and that unique taste which made them so irresistible had died.

Fast-forward a few years and I’ve pretty much been cash-strapped for the last two decades. Unexpected bills, a brutal divorce, a rapidly-growing child, school trips and all the other weird and wonderful paraphernalia of bringing up a child without passing on the money worries to him took its toll. But we got through it, trimming bits here and there, never making him feel he was different from his friends.

The Teenager would often come home from school and find me giving a new lick of paint to my most recent Gumtree find, or extolling the virtues of an empty pot of earth, which eventually grew into a chestnut tree. Until he went to high school, a lot of his clothes came from charity shops, as did most of his books. Despite the roller-coaster of financial ups and downs, we always just about managed to get through.

Then MS hit and the reality of losing my job and taking on alternative work at a much-reduced wage was tricky. I realised I was never going to earn a decent income, so I ploughed this anxiety into studying instead and it’s been the making of me.

There’s nothing more heartbreaking than your teenager asking you if we were ‘poor’.

We weren’t. Poverty is relative. He always had what he needed, perhaps second-hand, but he had it nonetheless. Technically we were disadvantaged and according to statistics, living close to the poverty line, but he did not need to grow up with that stigma.

Now The Teenager is forging his own life at University, I can fully appreciate the fantastic house we have created – our plant pots may come from a skip, but they produce a wondrous ambience. Our garden table and chairs are from Gumtree and were nothing a quick wash didn’t solve. Most of our furniture is second-hand, but lovingly-chosen and restored, the rest is donated.

Living with less – financially and health-wise – really made me wake up and appreciate every single thing I have. I’m not denying it was difficult but when I welcome The Teenager back home on vacation, I feel proud that we have made such a cosy and warm environment. The love and care that has been put into our house speaks volumes and I always want him to feel he has a safe space to come home to.

Looking back on my ‘Five Yoghurt Scenario’, it really did teach me many valuable lessons – you can’t take it with you, love is priceless and be careful what you wish for.

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Writing The Wrongs

One of the best things about having a blog is encouraging others who also want to start one.

Over the years, since 2012 when I first signed up to WordPress, I’ve spoken with people all over the world about how to get started, how to keep up the momentum and just how to have a real idea about what it is they want to say – what they have to say.

Back then, in the dark old days, I wanted to express what was happening after my MS diagnosis, what I was feeling. I was disoriented, lost and experiencing an entire whirlwind of emotions. Plus, I was also being slowly bullied out of my job.

I reached out to a writer who had written a very personal account of her MS in a national newspaper, about her struggle to come to terms with a life with MS. It was raw and brutal, exactly how I felt. We communicated back and forward through emails and she encouraged me to start a blog. The rest is history. Thanks to her, I’ve gone from blog to PhD.

I always wanted to be a writer, so perhaps that is why I feel privileged to be following this path now. MS shunted me from the career I was building to a building career – I work as a project manager for a building company. The irony doesn’t escape me.

But I wanted something more. I love my job – it allows me the flexibility and creative talent to excel at what I do, but it’s not everything. It also has an end-point. My energy is limited, I fall asleep at awkward times, I trip over stray wires, I repeat stuff. Luckily, I work with my best friend who knows more about MS than anyone else.

Writing has allowed me to discuss, dissect and analyse every single niggle I’ve ever had with MS, and bringing up a Teenager throughout a life with MS. Abject loneliness has been replaced with a worldwide hug of immense proportions. You guys just … get me.

You’ve been through the ups and downs, you’ve seen The Teenager through the best and worst of times. You even took the time to send him messages of support when he was in a grim place and he read every single one with a smile on his face.

Writing is incredibly powerful and I didn’t realise that until I started. I poured out all the pent-up angst and you were with me through my epic Pity-Party-For-One.

It’s hard, baring your soul. But, you guys have shown me that it is so, so worth it.

If when I attain my PhD, you’re all invited. Without you, it wouldn’t happen.

Reach out and lift up …

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How I Live Now

My seventh official MS-versary is looming.

The Teenager’s 20th Birthday isn’t far behind.

We got this far, and I still can’t quite believe it. Who would have thought that broken, miserable, pity-party-for-one person would morph into, well, me? Us?

We did it. All I wanted was to see my son safely into the next stage of the life of his choosing, not one imposed on him by this illness. .

He won’t have to tell people he never knew his mother, can’t remember her apart from a few vague snapshots; as I did with my dad who died long before the incredible MS treatment options we now have today.

Yes, we still went through hell. Mortality and High School don’t tend to go together, especially when you’re the single, main parent. Corners were cut, but the absolute commitment to him remained. I did my absolute best and he has, after a few shaky starts, turned out to be a young man I am incredibly proud of.

Of course, like me, he got angry. Angry that I was sacked, angry that I couldn’t find a new job after I ticked that disability box, angry that society turned its back on me . And most of all, angry that this illness had interrupted his childhood.

We had our battles, as we got used to our new roles. His once energised parent was now useless and tired, so, so tired, but he was never my carer. I hope I was always emotionally present for him even when my body didn’t follow the protocol.

I planned my Lemtrada infusions around his brief holidays with his father, trying my hardest to appear rested and healthy when he returned home two days after I was discharged.

Now he is at University, he is forging his own path. You could say my job is done, I got what I wished for all those years ago, and it is. The relief is immense, although I know his years in High School were not without MS dramas.

My son is not my confidant, I have friends for that. He is not my carer, I would employ one if I needed that. He is a young man making his own way in the world.

Some people say I’m just lucky that I was able to access brilliant treatment and I completely agree with them. I took the riskier, quicker option that I was fortunate enough to access and why wouldn’t I? Who else would pick my son up from rugby training twice a week? I accepted the side-effects (Graves, yep, am fat), but I would do it all again in a heartbeat.

I’m glad my son will not be taken to see my body when he is four years old, and forever wonder what he would say to me, should he have the chance. I’m glad my son grew up with me at his side, no matter what my disabilities. And I’m glad my son has grown up to be such a compassionate advocate for disability rights.

Above all, I am glad that he had you guys at his side – you’ve watched him grow up, you’ve given advice and you’ve comforted him and I cannot thank you all enough.

So, I may struggle every single day, but I will still struggle every single day and I will still struggle to continue doing so, no matter what comes my way.

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