Tag Archives: hospital

Life, As Always

stopLife is pretty grim right now, as my relative is still poorly.

So what better way to cheer myself up than dropping my trousers for a couple of doctors?

Today started like any other day at the moment – escaping to work to switch off for a couple of hours. I had a laugh with the lads, scoffed a couple of biscuits and had the first of several coffee breaks until I couldn’t take it any longer.

The pain in my right leg which had started up last week became unbearable. It was badly swollen, difficult to walk on and my ankle was puffed up.

I called my lovely chiropractor and booked an emergency appointment. He took one look at my leg, prodded it and advised me to go straight to my doctor Ah. The last time he said something like that in his Serious Voice, I ended up being diagnosed with MS so I was naturally hesitant and not a little alarmed.

He checked my Achilles tendon was intact – it was – then mentioned deep vein thrombosis, DVT. Ah. Ok. So I called my doctor and was miraculously slotted in for an appointment within the hour.

I made my way over there, thoughts whizzing round my mind. I could just go back to work and forget it all? Keep dragging my dodgy leg behind me in the hope it would somehow disappear? Maybe not the best idea.

So I sat in the waiting room, being coughed over by an elderly gentleman until my name was called. In the consultation room, I dropped my trousers, the doctor took one look at my leg, prodded it and set me on the DVT Pathway, which basically meant I was booked straight in to hospital and told to go there immediately with a bundle of paperwork.

By now I was kind of worried.

At the hospital, I was seen by a doctor within five minutes, which in itself was alarming. I dropped my trousers again. He ran a probe up and down my leg and squeezed it now and again. My leg, not the probe. I held my breath. He looked at the scans. I looked at him.

I was DVT-free. I almost kissed him, but he had a wedding ring on. He told me the swelling was impressive and probably due to a snapped ligament. I hobbled out of the hospital, got to my car and exhaled.

So now I am sporting a glamorous flesh-coloured compression stocking (if you have American Tan skin) and trying to keep my leg elevated as much as possible.

I’m trying to laugh in the face of adversity, but honestly, there could not be a worse time for this to happen. Life, eh?

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Third Time Lucky …

campathMy MS has been slowly getting worse again, so I’m booked in for a third course of Campath (Alemtuzumab) next month.

I had a sneaky relapse earlier this year and another one just the other week.

First off, I know how lucky I am to be eligible for the treatment; the earlier two courses put a stop to the relentless grind of relapse after relapse.

I got my (so-called) life back on track. Things were good. Until they weren’t.

So now, at the busiest time in our work’s history, ever, I’m frantically sorting out details:

The Teenager – he will (hopefully) be embarking upon his A Levels (all will be revealed on Thursday). I want to make sure he’s settled and happy before the Campath. My wonderful friend, who lives just down the road, will be having him for two nights.

The Cat – she has a reserved place at a cattery ‘overlooking beautiful Welsh countryside’ and her cat basket is safely stashed in my car boot. With her favourite blankie.

The University – which starts two weeks after hospital. Gah. I’m booked in to sort out a scribe, in case I’m not well enough to attend that all-important first lecture.

The Book Club – a week after Campath. I have diligently started reading ‘A Suitable Boy’, all 1500 pages of  it.

And as for the hospital trip, after the last two times, I’m feeling more than prepared. I will bake a batch of chia-seed energy bars to take with me, should the snacking compulsion overwhelm me. No more Jelly Babies and Maltesers. My mum has offered to bring in fresh salads and tempting-yet-healthy treats.

No books this time, certainly not ‘A Suitable Boy’. ‘Erm, excuse me, would you please stop screaming through your lumbar puncture, I’m losing my place. Ta.’

Pillows, natch. Favourite blankie (it’s not just the cat). Stash of magazines, from which I will snip out a pile of ‘must-buys’ before binning them. Ear-plugs, notebook to scratch down my very important musings upon hospital life, mobile phone, herbal tea bags, a few tea lights to brighten up the ward in the evenings.

It will all be fine. What could possibly go wrong?

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Weak As A Kitten

weak as a kittenCompared to last year’s Campath infusion, I am a whole lot more tired this time around.

Mind you, ‘tired’ doesn’t even begin to describe it – that’d be a bit like saying you’re a tad sleepy when in fact you’ve been poleaxed by MS fatigue. Utterly, thoroughly, totally exhausted would be more apt. Drained of energy, flat battery, squashed, deflated.

Since I got back from hospital on Wednesday afternoon, I have wobbled unsteadily between my sofa, my bed, the fridge and microwave. Right now, these are the four cornerstones of my daily life, with regular medication punctuating the long hours in between. Alongside all my usual pills, I need to take anti-histamines four times a day for a week and anti-virals twice a day for a month. If I had the energy to jump up and down, I’d rattle.

I feel nauseous and spaced out. Thoughts float through my mind on fluffy white clouds and float back out again. The world is either moving a second too slow or a second too fast. I can’t work out which. Everything is slightly fuzzy round the edges.

I have little five-minute pockets of energy,when I raise myself from the sofa and slowly pinball around the house finding little jobs to do, just so I feel I’m doing something. Only problem is, I forget halfway through what I was meant to be doing. I stand for minutes, staring at a pair of socks in my hands. What am I supposed to do with them? Or, why am I holding an empty toilet roll?

The steroids don’t seem to have left my system quite yet either, so I wake up in the middle of the night and still have a ravenous appetite. I’m like a locust, stripping food cupboards bare. Half a packet of digestives, circa last year? Yes please. Two bits of dried apricot stuck together? Nom nom.

All this to one side though, I am thankful that at least I know I will feel better very soon, unlike a relapse when it’s anyone’s guess. There is a definite end in sight.

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Campath 2, Multiple Sclerosis 0

fighting back against MSI’m back home from hospital and reunited with my sofa after my second course of Campath.

Having a combination of steroids and Campath over three days has left me exhausted but with a brain that refuses to sleep, so I’m not only a vampire with the continuing heat we’re having, but a shuffling, glazed-eyed zombie to boot.

What makes it all worth it though is that I have gone from having relapse after relapse to not having had a single one since my first course last summer. I still have the same symptoms, but there has been no progression – a bit like being frozen in time for a while, giving me breathing space to get my life back into some sort of order.

The hospital stay was brilliant, thanks to amazing staff, superb care and friendly fellow-inmates. One brave patient a few beds down from me let me test drive her swish mobility scooter one evening. Making sure I had the dial set to ‘tortoise’ speed rather than ‘hare’, I trundled up the corridor, executed a rather neat three-point-turn and reverse parked the scooter next to her bed again to a modest round of applause. After being hooked up to an infusion for most of the day, the freedom was exhilarating.

The hospital food arrived regular as clockwork and was, well, let’s just say, designed to be eaten by people with only a few, if any, teeth left. If I’d been given a straw rather than a knife and fork, I wouldn’t have been surprised. But steroids had given me a ravenous appetite and I ate it all, then ate all the food my mum brought me in afterwards, then woke up starving in the middle of the night and rummaged around in my bedside drawer for biscuits I had stashed away.

Aside from the actual treatment, probably the best thing about the last three days was being in an environment where MS was normal, and nowhere near the most serious illness being treated. It was a relief to chat openly to other patients with no need to explain anything. I think the steroids must have given me not only an uncontrollable appetite, but a bit of a motormouth too. One patient’s regular visitor quipped, ‘blimey, it’s awfully quiet in here when that Scottish girl reads her book…..’

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Single Parent, Multiple Sclerosis

Our little family has adjusted fairly well to life with multiple sclerosis, but now and again it throws up some major hurdles.

Even though my ex-husband and I are happily divorced and are bringing up The Teenager as well as we can despite the 140 mile distance between us, there are definitely times when it would be handy to have a partner around, or at least in the same city.

I’m booked in to hospital for my second round of Alemtuzumab treatment during the summer school holidays and it’s coming round far too quickly. The Teenager will be at his dad’s for a week as usual and with the way the dates have worked out this year, I will have just one full day to recover at home after three days in hospital before The Teenager is home again. I am panicking. Slightly.

Last year, the Alemtuzumab left me exhausted, weak and under the weather and I had several weeks sick leave from work but I also had three clear days on my own at home to start to recover.

I’m not so much worried about me, but about how The Teenager will feel seeing me lying on the sofa even more than usual. Is there anything more depressing than an ill parent? I tried to have a chat with him about it the other day and he’s promised me that if I buy him enough pizza, he’ll be fine, so here’s my plan to get through the first week or so:

  • Pizza
  • Accept all offers of help
  • When he’s out with friends, have a sleep, so I’m fully(ish) awake when he’s back
  • Encourage/bribe The Teenager to have friends for sleepovers
  • Stock the fridge with lots of good-quality ready-meals
  • Ignore the dust
  • Keep explaining that the treatment will ultimately make me much better in the long-term
  • Pizza

My friend’s daughter has offered to cat-and-house-sit again, so that’s one less thing to worry about. I’ll also organise a huge grocery delivery just before I go to hospital. I know what to expect this time round, so hopefully I’ll be better prepared than last year.

I was feeling very chuffed with my list and plans, then I checked my diary again. Yup, I’ll be turning 40 less than three weeks after the treatment. Now I really am panicking…

(no small violins were harmed during writing this blog post)

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