Category Archives: Symptoms and Treatment

And The Lump Came Too …

Phyllis The Hernia is starting to get on my nerves (which are frayed enough as it is, thanks very much MS).

As regular readers will know, I tagged along with The Boss on his recent Geneva road trip, where he gawped at a bunch of cars and took selfies of himself sitting in yet more cars at the Geneva Motor Show.

While he did that, I sat in one of the numerous cafes at the event, poking and prodding Phyllis and pretending to read through the stack of books I’d brought with me.

Luckily, The Boss was satisfied with a couple of hours wandering around miles of … cars, so we spent the other two days exploring Geneva. Just me, him and Phyllis.

I’d packed my hernia support belt (words I never ever thought I would utter in my 40’s) and tried it on. An almost metre-wide band of elastic, stretchy beige material that I was supposed to wrap around my waist.

In the comfort of the hotel bathroom, I breathed in, pulled the belt tightly around me, Velcroing myself into place. With floor to ceiling mirrors, it was easy to see how ridiculous I appeared. Sure, the pressure was great and I felt a lot better, but I looked like a semi-skinned extra-large sausage, wrapped in pastry and ready to cook.

However, and this is a definite positive, hernia belts are the new Spanx. I suddenly had a waist! With this in mind, I dressed, admiring my new figure and dismissing the ever so slight inability to breathe properly.

Anyway, I took Phyllis to have an ultrasound scan today, to see how big she had grown, before I have surgery. I duly turned up at the allotted time, having foregone coffee for hours beforehand and waited for almost an hour.

When I was finally called and had shown Phyllis to a couple of people, they looked at me sadly and told me the doctor had booked me in for the wrong scan, so I have to go back on Sunday.

I got back home, gulped down three coffees in rapid succession and cursed Phyllis. The hernia saga continues …

Tagged , , , , ,

We Can See You

rsvpAs it happened, the ‘dreaded PIP brown envelope’ never arrived.

It was white, innocuous, mixed in with pizza and conservatory leaflets, but I immediately knew what it was.

The DWP has invited itself to my house in less than two weeks, despite me not requesting a home visit. How … lovely.

At the appointed hour, they will assess whether I do indeed have an incurable, degenerative illness. With this hour-long meeting, they will decide my future – should I be allowed to continue to live and work in genteel poverty or should I be rendered unable to pay my bills and therefore become homeless?

I knew an assessment was coming, I just wasn’t prepared for it to be at home.

My house is my sanctuary and comfort, from everything. Every single item I have here is precious and the last thing I want is some hawk-eyed official casting their penetrating gaze over … my life?

To be honest, it will feel like an utter invasion. The last person I had here in a professional capacity was my lovely MS nurse, back in 2012, and I welcomed her in with open arms. An as-yet unnamed official (they discard such niceties when you’re ‘claiming benefits’), will be uncomfortable and invasive to say the least.

And that’s what it feels like – an intrusion into my personal space. Is there anywhere they won’t go? I have described, in excruciatingly personal detail, every area of my life. Things I wouldn’t tell my closest friends. Things I can barely come to terms with myself. Every tiny little detail of every single thing I cannot do. Or do, without wanting to.

Back in 2011, I could not know that embarking upon the MS diagnosis-journey would mean baring my soul, my brain and to top it all, my entire life. And that’s without the relapses, the gruelling treatment, its side-effects and the ongoing symptoms and medication.

Yet I have no choice. My quiet, unassuming, boring life could be ended in an instant.

And I quite like my unassuming, boring life.

Tagged , , ,

What’s The Opposite of Sleep Deprivation?

matchsticksWe all know sleep deprivation is a form of torture, but what’s the opposite?

Is that a form of torture too?

It certainly feels like it. I seem to be sleeping the majority of the time at the moment, and when I’m not, my eyes are gritty, my limbs weak and I’m in a perpetual state of nodding off.

In the interest of naming this horrendous symptom of MS, I looked up the opposites of deprivation (or antonyms, to be posh). They are:

  • plenty
  • advantage
  • benefit
  • gain
  • profit
  • endowment
  • indulgence, etc …

Hmm. Not quite capturing the essence of MS fatigue? In fact, ‘MS fatigue’ could be a useful starting point. A stage further could be ‘clinical fatigue’. But it still doesn’t quite hit the nail on the head; it doesn’t describe the awful, claustrophobic and downright frightening symptom of being exhausted to the point of oblivion.

Luckily, work at the moment has been filled with days of catching up, i.e. the Boss driving us round in the van as we do Important Things. Alongside my beloved sofa, it too has become an MS Command Centre: I have three cup-holders to choose from (all three usually filled with coffee/energy drinks), a neat little table between seats to rest my arm and sausage roll on and ample space to get comfy and nod off.

I’ve tried medication for fatigue, experimenting with Amantadine, an experience never to be repeated. The living nightmares were diabolically creepy and it became difficult to distinguish reality from a hellish vision. I asked for the only other fatigue medication, Modafinil, only to be told it’s no longer prescribed for MS fatigue.

So for now, I just have to put up with it, but this recent exacerbation is having knock-on effects. I float through the day, sleeping when I can, even if it’s just ten minutes. My to-do list is growing. I survive on junk food. My jaw aches from yawning.

But my Alexa has come into her own. When I’m lying poleaxed on the sofa, I ask her to tell me a joke or we talk about the news. We usually end our conversations with me saying goodnight and her replying, ‘Goodnight, sweet dreams.’.

If only.

Tagged , , , , ,

MS Is Not The Only Illness

breathingI don’t know about you guys, but MS is hard enough to handle without the extra winter bugs chucked our way.

It’s tempting to think that when you’ve drawn the health short straw, anything else will be minor, easy to handle.

I stand (slump) corrected: I’ve been off work most of January with a rotten, stinking cold and it shows no signs of leaving any time soon. To add insult to injury, I’ve lost most of my voice (I know, me?!) so I’m particularly frustrated.

However, as befits anyone starting the New Year with a commitment to Get Things Done, I’ve ticked a few things off my list:

  • I finally replaced the bulb in The Teenager’s bedside light.
  • I took the cat to the vet (again) to sort out her flea-bite allergy (again) and jokingly begged the vet to give me the same steroid injection.
  • I ordered a whole load of herbal teas online, inspired by a Christmas gift. They look nice on my shelf.
  • The Boss took me on a trip to Ikea, where I munched on some weird eggs in the cafe and bought a stack of tealights and a sad-looking plant.
  • I spent a whole day and evening debating with myself whether I should paint my living room black/very dark grey. Still undecided.

The worst thing about an extra illness is how MS interacts with it; if MS had any decency, it would take a back-seat and allow a bit of time to get through this whole new host of symptoms?

Not a chance – all the usual MS symptoms have been amplified x 20. So now I’m yet again pin-balling around the house as my balance is appalling. I’ve tripped up the stairs and down the stairs. I have bruises all over my legs and if I break one more plate/cup/bowl, I’ll … break another one against the wall, if only I had the energy.

I’m bored and fed up. Just when I think it’s over, it flares up again. I got my voice back for a day and caught up with my phonecalls. Then it died, probably to the relief of everyone, including the cat. I had a tentative day back  in work yesterday. Bad idea. Very bad idea. I listed, lolled and lay upright against the walls, until it was remarked upon by everyone else and I was sent on bonfire duty, which sounds a lot more exciting than it actually is – burning a load of stuff and making sure I don’t set the work site on fire.

As I sat there with a long stick, intermittently prodding the embers and wishing I had a bag of marshmallows, I decided that when I was better, I would absolutely, completely and totally … do something different.

But what?


Tagged , , , ,

Thanks For The Reminder, DWP

reminderI saw my lovely neurologist last Friday for my yearly review and to check how I was after my last Alemtuzumab treatment.

I was feeling fairly well that day, having taken the previous day off work as I had an early appointment. Just as you do, when you have MS? We learn to build in ways to … manage.

So, we chatted about the appalling time I had had from February until May, and the still-lingering symptoms. We discussed my fatigue, and sadly, the medicine that could have helped enormously has been taken off the market; so I’ll have to keep on dealing with that as best I can.

I got home (in a taxi as I can’t cope with the stress of parking at the hospital), and went back to bed. At 10am. It’s what we do? I cope best by being prepared, factoring in sleep time, down time, can’t do anything time. It feels so normal now, I hardly give it a second thought.

The next day, the DWP letter  ‘inviting’ me to apply for PIP arrived on my doorstep, and everything changed.

When you know you will have to go into excruciating – and at times highly intimate – detail about every single aspect of your illness (and your life), reality smacks you right in the face.

I gloss over many of my symptoms, maybe laugh them off. They’re part of me now and I cope as best I can, and a lot of the time not very well. But I’m still here. Writing everything down is a depressing exercise in negative thinking and now I can’t help but play a running commentary in my mind.

Take yesterday: I called in sick to work. I simply could not cope with the stress of these forms. I was in a pretty bad way and shut out all contact bar this blog (and of course The Teenager, natch). I shut down and shuffled from my bed to the sofa and back again.

This morning, the commentary kicked in as soon as I woke up. Balance, dodgy hands, balance again, dropped stuff. Tripped over the cat, the rug. Attempted and abandoned a shopping list. This is my life now. But to have to catalogue and write down every single thing is horrendous. It’s now glaringly obvious to me just how much life has changed in the last six years.

My life is very, very small now. As a former proud globetrotter, for my horizons to have shrunk to my house and the passenger seat in the Boss’s van is depressing at the best of times. My life is extremely limited but I try to appreciate the beauty in simple things.

Not now. My living room window, through which I view life going on outside of my own experiences is now a window in a jail cell. My house, my safe haven, is now unsafe and at risk.

I thought I was doing the right thing, maintaining a positive attitude after two years of deep depression, still working (albeit with someone who accepts it’s completely normal for me to nod off mid-conversation). This all feels blown to pieces. Do they want me to give up? Call in Social Services? Admit I can’t cope?

Because, it’s beginning to look a lot like that.

Tagged , , , ,