Tag Archives: multiple sclerosis

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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Aw, No, Not Again?

My three worst MS symptoms are fatigue, nerve pain and brain fog, in no particular order.

To a lot of people, this sounds fairly manageable; we all get tired, a bit fuzzy in the old brain and we all have aching legs and arms? Yes, but, I’m only telling you the three worst symptoms, and there’s plenty more.

Anyway, I like to think I’m quite savvy with my MS comings and goings, yet it never, ever fails to surprise me.

Long story short, the MS fatigue is back with a vengeance and it means serious business. On Sunday, I felt so tired, I actually wanted to throw up. I flung myself on the sofa and was dead to the world for two hours. On Monday, I called in sick to work and went back to bed. Twice.

I went to work today (I have to, bills), navigated the terrain really well and luckily we finished early. My lovely boss even walked up the road and payed a cheque in for me while I sat on the door step of the house we are working at, feeling quite useful as I watched out for parking wardens.

Back home, I got out of the works van, stood on the ground, then my left leg gave way and I just collapsed. Bit embarrassing, extremely painful, hope the neighbours didn’t see.

So I have a flare up and it’s a bad one. I haven’t been like this for months. Every part of me is saying, ‘breathe, take it easy, it’s fine’, but inside I’m fretting. I’ve already missed so much time off work and studying has been pared back to the absolute minimum.

Brain fog has ensured that for the last two weeks I’ve run out of stuff to watch on Netflix and Amazon and am looking forward to the next series of ‘Married at First Sight’. Anything is easier than picking up books.

I’m trying to look after myself though – the boss makes sure I get to shops for food, he’s understanding about the time off and he cheers me up no end when we’re sat in the van putting the world to rights, as builders do. He even bought me a burrito today and expressed surprise when I swooped in on his leftovers, ‘nom, nom, first cooked food I’ve had in days‘.

I know this will pass, it’s just that awful sinking feeling when you know you’ve got to ride out the latest setback. I’ve instigated Code Red, the Ten Minute Tomato Rule – try ten minutes of everything. So laundry is in machine. Cat is fed (she’s on a Whiskas strike and will only accept Sheba – it’s a battle of attrition). I vacuum for one minute every other day and take nine minutes out.

It will all be fine. In the end.

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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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Playing The MS Game

Almost seven years after my diagnosis, and years of symptoms before that, I think I’m now fairly adept at playing the MS Game.

I know when it’s best to:

Wake up – 5am – brain at fullest function, emails, print things off, brainstorm Uni stuff. Coffee helps.

Shower – straight after work (I know, weird, huh?) but working as a builder, it’s best to wait until after work as I just can’t handle two showers in a day. I shove my hair under a woolly hat and hope for the best (and some customers call me ‘lad’, gah).

Cook – a moveable feast – whenever I have the energy. Freezer bags of pre-cooked food are my friend for bad days when I can do nothing more than microwave. On really bad days, well …

Work – has changed so much over the years. Thank goodness my job is flexible and can be adjusted to how I’m feeling, plus working with a group of friends is balm for the soul, compared to the bullying I put up with in my previous job.

Study – five minutes here, ten there. Anywhere and everywhere. Boss drooling in Screwfix? Whip book out, highlighter in hand. Boss talking for hours with the plumber/electrician/plasterer? Same. As friends, we go back a very long way and he knows I pull my weight (lol).

Do Housework – on an ‘As And When’ Basis. Cordless vacuum, ignore the dust. Keep hold of that leaflet for cleaning services for when I win the lottery.

LIve – the tricky one. I no longer travel alone. I rarely socialize. Once, twice a month – it’s a lot of effort. Home is my safe space. Meetings are planned for the morning and taxis are a godsend. It’s the afternoons and evenings that are the problem.

Handle Relapses – the worst of all worlds, especially living alone. All of the above is scaled back to The Sofa.

Hold a Pity-Party – definitely in the wee small hours. I’m plagued by MS insomnia at the moment and seem to feel every single symptom, amplified. My legs crawl with neuropathic pain, I twitch, my hands move too fast or too slow. It’s a waking nightmare.

I think when you have MS, you live with endless body-consciousness – we know exactly what we are capable of (or not) on a day-to-day basis. I still smile when someone says, ‘yeah, cool, next Thursday?

I have absolutely no idea how next Thursday is going to be …

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