Category Archives: Emotions

Leave No-one Behind

Some of you may have seen my tweet about my dad yesterday.

It would have been his 76th birthday, but MS took him from us shortly after his 35th, back in 1978.

Of course, MS was vastly different back then – no DMD’s, no MRI’s, no MS nurses and no real understanding of the illness. A severely weakened immune system with no way to stop it meant that people like my dad were susceptible to normally-treatable illnesses.

Thankfully medicine has moved on in leaps and bounds over the following decades and a diagnosis of MS is no longer seen in the same way it once was.

When I was diagnosed in 2012, there was an abundance of medicines, support, online help and a plethora of organisations who reached out and helped me through the Newly-Diagnosed forest.

I count myself as immensely lucky to be living in these times. My medication held back the onslaught of the worst that MS could throw at me, and I was able to see my son through high school and into university. Unthinkable for a lot of people just a few decades earlier.

I admire the drive to cure, and the medicines which are life-altering for so many people. Yet, we must also concentrate funding efforts onĀ living with MS. Many people with MS cannot access treatment or are ineligible for DMD’s. Money must be found to support people, and their families, who fall in to this category.

I know first-hand the utter loneliness and isolation MS can bring. The depression (rates which are a whole lot higher than for the rest of the population), the despair. We need to ensure that every single person with MS, whether they may benefit from the shiny new medicines or not, are supported and cared for.

Families too must be supported. Child-carers should never exist. Partners of people with MS must have access to support. But we know this simply does not happen. Benefit cuts, gruelling re-assessments for our incurable illness, lack of work options, a non-supportive, primarily able-bodied society. These all combine to make life with MS an all too often uphill struggle.

No one should face MS alone, whether it is the person with MS or their child, or their partner or their family member. In amongst the joy of new treatments, we have to reach out and gather everyone who lives with or is affected by MS with us.

My dad was apparently a bit of a cheeky monkey (so that’s where I get it from). Once a keen mountaineer, an industrial chemist, a father of four and a husband, I hope he has left behind a legacy that I can do a little bit to move forward.

As I said in my tweet, I miss him more as each year passes. I will never be able to talk with him, the one person who would understand what MS has brought into my life. He remains ‘back then’.

But I’d like to think he would want to look forward, to a future where no one is left behind with MS.

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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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You’re On Your Own

What does it feel like to live on your own with MS and essentially be your own carer?

Luckily, we now have a vast array of information for carers of people with MS. There are carers groups, helplines, benefits.

Thank goodness things have improved immeasurably since my dad had MS back in the 1970’s.

But living on your own with MS is a whole different ball-game – you are the patient and the carer. Sure, we might see our neurologist and MS nurse once a year – the support they give is invaluable.

Yet look beyond those two appointments, and you discover a whole raft of worry, anxiety and fear. It’s almost like arguing with yourself: ‘you need to rest’, ‘Yeah, I know, but I need to go to work/sort out the laundry/write a shopping list.’ And, ‘whoops, there goes another coffee cup, who’s going to clean it up?’

Sometimes you can cope with the conflicting advice you get from yourself, and then other times it tips over; you’re too tired to make dinner, you fall out of the shower and lie on the floor for over an hour, you take yet another day off work and worry about your income. It is Just You.

It doesn’t help when you’re also too damn proud to ask for help. I’m fortunate in that I know I have that back-up should I need it, but it still makes day-to-day living hard at times. My long-suffering Boss sometimes takes me to pick up my prescriptions, drives me to the shops for food and is always on hand to fix a blown fuse or a broken washing machine. But back at home, when the door closes, I know I’m on my own.

It’s tempting to slide into another Pity-Party-For-One, and I always fight against it – I held one for two years after my diagnosis and I don’t want to revisit those dark times.

I wish there was more information about Living on Your Own with MS. Many of us do. We muddle through.

And of course, there’s an upside – I’m eternally grateful I was on my own when I fell out of the shower. The thought of being discovered clutching a bunch of cotton buds, naked save for a small towel brings me out in a cold sweat.

This is where social media comes to the fore – to send a little tweet out into the ether and have so many comforting replies is amazing.

We may live on our own, but are we still part of a bigger network?

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Grossly Unfair

I don’t need to be ‘fat-shamed’.

I do that myself, quite easily, every single day.

No-one was more shocked than me, with how much weight I packed on after starting medication for neuropathic pain, back in 2011.

Then the Grave’s Disease, oscillating between hyper and hypo with a string of meds to match.

Then the carb-fest I indulged in during family dramas.

So, yes, I admit it, I’m fat.

I agree it’s not a disability as such, but it’s certainly a side-effect of a disability, in my case, MS.

On top of everything I’m coping with, I’m astounded that some people have a problem with my weight. I’m mobile, I work, I go to University to study, I look after myself and need no external help.

It’s not easy finding nothing to wear in shops apart from lurid tops in garish colours. Or catching a glimpse of yourself in one of those long mirrors – the chubby face, the still-healing hernia, the ‘bigness’ of me, when inside I feel pretty small.

It’s weird – my MS is mostly invisible and I have to prove over and over again that I am in pain, that I could do with some kind words and help. Yet my weight, outwardly visible, is what people remark upon and feel free to make hurtful comments about.

Believe me, I know. And I also know that fat-shaming does not work.

Fat-shaming keeps you at home, exactly the same as MS. It keeps you out of view as much as possible. And it hurts, deeply.

When I stand on stage and talk to a crowd of people, I’m acutely aware I’m fat. But, I put that to one side and give my best. The people are there to hear me talk, not judge me on my dress size. I would like to think that what I have to say about MS is far more important than my weight.

I am not impacting our NHS or our social services with my weight,

I carry it all by myself.

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Hello World

I don’t get out much.

Truth be told, I don’t get out much at all.

So, to be part of a regenerated writing group has been brilliant and so far, I’ve managed three monthly meetings out of three. Yay!

Fair play, it takes a lot of planning. I worked all weekend and took the day of the meeting off. I’ve been whacked over the head by my old nemesis MS fatigue recently, so I woke up, watched the news and fell asleep. Twice.

Wading through treacle is an understatement. There are simply no words to describe the skull-crushing, soul-sapping fatigue of MS and it doesn’t seem to get any easier.

Is it the invisibility? The difficulty in explaining? Or just that awful, horrendous feeling that most people with MS will be familiar with? The one that makes you want to cry with frustration. Who knew tiredness could actually be a painful ache?

So it’s all the more important that I get out into the world, tempting though it is to stay hunkered down in my sofa. Living on my own, perhaps even more so.

And here’s the truth:

MS is bad enough. But living with MS and Complex PTSD is a double whammy, something I had to admit to in my PIP form. Many of us do, and it’s something I’ve touched lightly upon in my past blogs.

Weirdly though, knowing what I’m up against has made me stronger and more willing to fight, after wondering why I feel so bad when I should be feeling better. I have a wonderful life, for which I am eternally grateful. The Teenager is thriving, despite the terrible knock-backs he’s had to cope with, and that to me is more important than anything.

I only have to look around our cosy little cottage to smile; The Teenager’s bedroom ready for whenever he wants to crash here, the cat ready to greet him, the continuity of it all is a wonderful thing.

MS has made me face up to challenges and Complex PTSD is one of them. It can happen to any of us, at any time, but if the effects are suppressed, the fallout can be huge. Add MS into the equation, and it’s asking for trouble.

I’ve messed up, trusted the wrong people with the right information. I’ve made a fool of myself and have paid the price.

True friends are hard to come by. The ones who ask how they can help are the ones I cherish the most.

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