Category Archives: Symptoms and Treatment

Oct 09 2015
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Symptoms and Treatment

The Perks Of Being A Goldfish

goldfishThere’s nothing much happening in our little cottage since I’ve been convalescing from my third course of Alemtuzumab, so I’ve mostly been Thinking, which is always a risky undertaking.

Uppermost in my mind is, well, my Mind. In other words, my Goldfish Brain.

This is best explained by my risible attempt at New & Experimental writing at Uni:

I had to ‘write a sketch  in which the gender of the narrator and/or characters is obscured or manipulated in some way’.

Really.

So I did what any pretentious peep with literary leanings would do and wrote a sketch using only titles from the top 50 bestseller list from a popular bookstore – sample line: ”It was always Personal, always about Us. Where My Heart Used to Beat, there is only Lamentation”. Counter-culture or what? And I even called it ‘Water & Stone’. Yup, I am that tragic.

Anyway, I polished it, posted it on our forum and promptly forgot about it. Which probably wasn’t a bad thing.

This got me Thinking. MS has taken a giant eraser and smudged out a whole part of my brain. At first this was pretty frightening, as you can imagine. Words failed me, jokes died, anecdotes withered in the middle and post-it notes bloomed all over the house.

Looking on the bright side however, I decided to write a list of all that was positive about this, and here it is, taken from my scribbles:

  • Supermarket home delivery is a joy, every single week. I completely forget what I’ve ordered, so when I unpack the bags I stare in wonder at the gluten-free pasta and think, ‘wow, I needed this! How fabulous’. Digging through the bags is exciting and just like Christmas. Especially when they pop in a free sample – ‘yay, a small pot of spinach-flavoured yoghurt, just what I wanted’.
  • I am the Best Ever Friend. I’m the friend who can not only keep secrets, but also promptly forgets them. Result.
  • Every day is a whole new experience. I wake up refreshed, having forgotten the traumas of yesterday. If I’m reminded, I’ll deal with it. If not, I enjoy my coffee.
  • I can’t argue any more. This may sound like a bad thing, but believe me, it’s an unexpected bonus. People will attempt to bring me into long-standing grievances/arguments/slights and I’m like, ‘oh, really? And when did that happen?’ They will then start talking really slowly in a very loud voice to me and try to explain. I forget.
  • I’m never bored; I gaze at my pile of books by my bed (just the books I want to read, how amazing), I admire my friend’s notes from Uni (was I actually at that lecture? Wonderful, let’s read the notes and enjoy it all over again). Hey, someone’s put more loo-roll in the bathroom and it definitely wasn’t The Teenager. How thoughtful.
  • Last but not least, I forget how much chocolate I have eaten.

Mind you, I’ll have to rein in this Goldfish Brain as I start back at work in a couple of days.

Apparently I’ve met with The Boss for coffee several times over the last week for a catch up and debriefing. If you remember what we talked about, could you send me some notes?

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Oct 04 2015
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Symptoms and Treatment

Sick. And Tired.

workWell, this convalescing malarky isn’t much fun.

An interminable routine of waking up and falling asleep, interspersed with hideous headaches and increased foot-drop, so much so that I had to dig out my craft glue-gun and stick the soles back on my favourite boots after tripping over one too many pavements.

University started back last week which was a welcome reprieve. I packed my file, pencil case, water bottle and emergency Pro-Plus and toddled off, careful to watch my step as the glue has been in a drawer for a couple of years.

A whole module of New and Experimental Writing. Exciting. Or so I thought. I pondered ruminated mused, ‘I can be avant-garde, I can be Left Bank and enthuse about counter-culture and the like’. I pictured myself in six months time, graciously accepting a literary prize for my ground-breaking, innovative novella in which the main character was an MRI scanner. Brilliant. Undeniably genius.

Anyway, back in the real world, I have one more week off work and plan to sleep through most of it in the desperate hope that I can bank some energy. I dipped my toe in the water yesterday and worked with The Boss just to see how I’d manage. All went well; I was on top form, as I’m pretty good in the mornings. We started off with a debrief over coffee and toast in the local cafe. My eyes glazed over after a while and he dragged me to work, bribing me with a flapjack from the bakery next door.

It was fine. Until about noon, when the foot-drop reared its ugly head. There’s a lot to trip over on a building site. There’s a lot of holes in the floor, and after my spectacular fall through a kitchen ceiling a couple of years ago (which I’m reminded of on a weekly basis), I’m pretty careful.

I yawned more and more until the boss took the hint and wrapped it up by 1pm. Bliss. I fell into my house, threw myself on the sofa and didn’t move for three hours. I’m not so sure my Back To Work Plan is, um, going to plan.

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Sep 27 2015
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Symptoms and Treatment

How Not To Convalesce

illnessTime off to recover after Campath is a tricky thing.

Viewed in a certain light, it’s an excellent chance to slow down, take stock and make the most of the enforced sofa-rest, cushioned by a pile of books, a stash of chocolate and box sets.

In normal life however, without my very own Mr Darcy, the washing piles up, The Teenager has started his A Levels, the cat insists on bringing home an endless parade of headless mice and Ocado have emailed, imploring me to book my Christmas Delivery Slot, NOW.

In between bouts of complete and utter exhaustion, I’m battling to keep the show on the road. Plus I’m trying to think laterally and use the time off not only to rest but also to get ahead, i.e. work my way through the entire University reading list for next term.

I had all the books delivered, settled down, unwrapped a bar of Green & Black’s and prepared to be inspired and transported to wondrous new worlds.

Bad idea. I checked the syllabus. I checked the books. I emailed the tutor. ‘New and Experimental Writing’. Let’s just say, I have no idea what Gertrude Stein was taking when she wrote ‘Blood on the Dining-Room Floor’.

However, I ploughed through, ticked her off my list and moved on to the next one. Excellent. Somehow, I have moved into a Poorly Routine. I get up early when I have most energy, do something outside the house, get back by lunch then snooze through the entire afternoon. Then, I wake up, cook dinner, snuggle under my blanket again and wait for bedtime. It’s been working. For a while.

Two days ago, same routine. I got up early. Then fell on the floor.

Oh. Painful doesn’t begin to describe it. I was in agony. I could barely walk and somehow made it downstairs through a combination of swearing, clinging on to the handrail and thumping. By some bizarre coincidence, I had booked in to see the chiropractor, more for The Teenager than for me (scrums, head-locks, dodgy balls).

Long story short, my psoas muscle is in spasm. The pain goes through my pelvis and groin and out through my lower back. Walking is excruciating. According to the chiropractor, it’s all due to my sudden inactivity. Lol.

When I told my MS nurse I planned to return to work ten days after Campath, she laughed, then said, ‘no you’re not’. Ok then. Quick call to The Boss to explain the situation. His reply? ‘Didn’t notice you were off, Half-Shift. Or should that be Sick-Note?’

Charming.

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Sep 16 2015
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Symptoms and Treatment

Ding Dong – Campath, Round Three …

campathMy third course of Campath (Alemtuzumab) is over and I am now back home from hospital. Yay!

The last three days have been a humbling, bonkers, strange experience. Third time around, you kind of know what to expect. And yet, I didn’t. Not really.

When I checked in on Monday morning, I felt like an Experienced Patient as I was shown to my bed. I unpacked my two pillows (essential), my blankie (a must-have), a selection of healthy snacks (mostly left uneaten once the steroids kicked in), a pile of paperbacks (overly ambitious), two towels, an array of miniature toiletries and a pen and notepad. Sorted.

The first surprise was being sent for an MRI before the first infusion. Ah. Right. Didn’t see that one coming. No time to go through my deep-breathing-yogic-anti-claustrophobia exercises, so I happily accepted half a Diazepam.

I therefore floated down in the lift, through the MRI waiting room and gently bobbed towards the hard plastic tray, humming to myself. Then afterwards, floated back up again, ready to be hooked up for the first lot of steroids and then, after being flushed through (really), the Campath.

So far, so good. Then, the same thing happened as before; that all-consuming, incredibly painful, every nerve ending on fire sensation, when the Campath first hits your system. I crawled into a ball and held my hand out for anti-nausea tablets and painkillers, whimpering ‘this too shall pass‘ to myself.

It passed. I ate a lot, read not a lot and dozed on and off. Luckily I had a steady stream of visitors who kept my chin up and brought me even more carb-laden snacks to feast upon. At the end of the first day, I was flushed out once more with saline and unhooked. It was 7.30 pm. Gah.

The second day was pretty much the same, although without the painful Campath-Hit thank goodness, but then the steroids did their job and kicked in. So I spent the second night wandering the corridors, eating toast with a nurse at 4am and offering to help clean some tables. I had a crazy amount of energy and had already packed and unpacked my bag twice.

This morning, after two hours sleep, I went bleary-eyed to the hospital Starbucks before my infusion and started hallucinating. I could have sworn I saw The Boss moving determinedly towards Starbucks at exactly the same pace as me. I stopped and stared. The vision stopped and stared. I waved. It waved. Gah. It really was my boss. He’d done a pit-stop to buy me a coffee and muffin before heading to Screwfix. As you do. It was lovely and we had a good old catch up, slurping away on our lattes, just as if I was back in work.

Third infusion and I realised, not just how lucky I am to have access to such an incredible treatment, but that I no longer have that same level of fear. If that makes sense. The first two rounds, I was fearful of the future, of everything. Now, I feel much more in control. Which is odd as it is my re-activated MS which sent me back here.

Anyway, now I am home and I have used up the rest of the steroid energy by sorting the house out, ready for the inevitable crash.

Tomorrow is another day. But at least the fridge is stocked, the bins are emptied and I have a huge pile of paperbacks to get through. Result.

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Aug 31 2015
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Symptoms and Treatment

It Is What It Is

it is what it isMS is scary and you have to be pretty tough to deal with it.

Sometimes I think I’ve cheated it, got away with milder symptoms, not such drastic life changes.

Then I remember the falling over, being sacked for having MS, the life-long partner scarpering at the first signs (garbled speech and wonky walking).

So, yes, on the surface, I seem ok. Normal, even. Whatever that is. Then I remember my third course of Campath, due in two weeks. Three days in hospital.

Alone.

Apparently my MS has ‘reactivated’. Which I knew after the bad relapse in the Spring, but it’s always hard to have it realised through a scan, with a bright, enhancing lesion.

Anyway, after years of utter despair, I have come to terms with this disease. I think.

It is what it is. I was chatting to my mum earlier and she was telling me about my dad and his MS. There is no comparison. He died before my fifth birthday, aged just 35,  and one of my earliest memories is of him at my fourth birthday trying to eat ice cream. And failing.

And now I have MS.

Is it a burden to have a parent with MS? I am now that parent, with MS.

I feel a compulsion to try and explore every possible treatment. I have signed up to all the PhD research, I have put my signature to more blood tests for MS research. I make myself available for future courses for people with MS.

Is it enough?

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