Tag Archives: hospital

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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Hospital Bed Booked…

I had a letter a couple of days ago confirming that I’ve been booked in to hospital for my follow-up Alemtuzumab treatment in July. Last year I was in for five days and four nights.

This year, only three days and two nights. Looking back on it, I was a complete hospital novice. So here’s my list of what I will be doing differently this time around:

  • Pack my own pillows. The hospital ones (if you are lucky enough to get one) are super-thin slices of foam. And that’s being generous.
  • I won’t be taking a huge pile of books. I ended up reading only newspapers and trashy magazines, but I did learn a lot about Heidi and Spencer Pratt’s marriage and Cheryl Cole’s beauty routine.
  • Staying overnight in a Neuro Day Unit means you have absolutely no privacy all day. People come and go for tests and treatments, usually bringing a bunch of family members with them. It’s like having a whole load of strangers parading through your bedroom. Must also remember to lie when people ask me if lumbar punctures hurt (they do, I was a screaming banshee).
  • Cannulas hurt like hell too and it stays in the whole time. Must get it strapped up when not in use as do not want to recreate the Psycho shower scene like last year.
  • Much as I loved the regular tea trolley trundling around at all hours, it tastes awful. Will make regular trips downstairs for the hard stuff.
  • Accept all the sleeping tablets I can get my hands on – hospital beds are uncomfortable, some lights stay on all night and there’s strange people wailing down the corridor.

I will be a calm, confident patient. I know the score this time round. Still a sobering experience though, when the reality of MS really kicks in, far more than just putting up with symptoms on a day to day basis. This is real. The doctor says so.

So when everyone else is packing for a week in the sun, spare a thought for me as I pack my pyjamas, fluffy slippers and selection of snacks to munch on (Jelly Babies, dried banana slices and cookies). God knows what I’ll look like walking through the hospital corridors on my way to book in, struggling with a huge bag and two pillows under my arm.

One other point – do hospitals have wi-fi? How will I stay up to date with my blog and Twitter??

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The Waiting Game

Like most people with multiple sclerosis, I am now an old hand at waiting around for appointments and yesterday was no exception. The eye saga continues and I was back for my follow-up.

Armed with my mum, a book, a notebook and pen (to jot down my musings, natch) and a bag of raisins, I went to hospital again. We have our routine down to a tee now – shops, coffee, loos. To shake things up a little, mum bought me a fruity, chewy cookie instead of a biscotti.

First, I had a Humphrey Field Test – a bit like sitting in front of a Space Invaders screen, clicking a joystick whenever I saw a little light. I scored nearly 100% and was absurdly pleased. Next, it was over to the other clinic to wait to see the eye doctor.

Being an old hand, I registered the expected crowd of people and expertly (and with some panache) wedged myself into one of the seats and casually took out my book.

Twenty minutes later, I got called through to have drops put in my eyes to dilate my pupils, which blurred my vision so I put my book away and people-watched instead. An old man in loose trousers trumpeted into his tissue then closely examined the contents. An astonishingly well-behaved toddler toddled around his pregnant mother. The receptionist directed endless people to the loos and a couple argued under their breaths.

I used to be such an impatient person, huffing and puffing if I was kept waiting, dramatically tapping my watch and rolling my eyes. Why? It didn’t do me any favours and no amount of loud sighing would bring the appointment round any sooner. I guess MS, in its own way, has made me a much more patient person. I am almost zen-like in waiting rooms now, like a little Buddha.

Eventually, I was called in, pupils fully dilated. Ran through the symptoms, no change. Retina is still a cause for concern so I have a follow up in four weeks time. Same time, same place, same waiting room…

(If you’re new to this blog – the eye saga is here: Eye See and Eye Don’t Believe It)

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In A&E – But Not For Me

Strange to be on the other side of the sick bed. My friend was visiting when he started having terrible stabbing and tingling pains over half his face, along with a pressure headache and a painful eye. Hmm, sounding slightly neurological, no?

After a bit of kerfuffle (‘I’m not sick, me man, we are strong’), I managed to drag/push him through the doors of our local A&E, marched him up to the desk and got him booked in. We got seen pretty quickly, a huge range of tests were carried out, he was prodded and poked and we speedily googled everything they told us. I had great fun pulling the ECG tabs from his chest and when the lunch trolley came round, we shared some corned beef and pickle sandwiches, chatted away and tried to stay calm.

Hospitals are funny places. All human life is here. In the opposite cubicles, a man was lying all on his own, the man next to him was having his arm put back into its socket and there was a tiny lady with whispy hair wandering around talking to everyone about her walking stick and a suit she should have been wearing (no, me neither).

I clearly remember being in the same assessment unit, just over a year ago. I was frightened and in a state of shock. I had booked myself in because I woke up and couldn’t speak properly – mixing up words, unable to find the right word, generally talking more rubbish than usual. All this kind of made me thankful that the whole diagnostic process was now behind me. After a year of tests, knock-backs, uncertainty and fear, yes, I have MS. But at least I know what I am dealing with.

Within a couple of hours, the doctor decided my friend wasn’t having a stroke or suffering from anything seriously neurological, it was an episode of trigeminal neuralgia. Painful but treatable. We collected his prescription and left. It was good to feel useful in an emergency and for it not always to be about me. He is now resting at home. I hope. Knowing him, he’ll be back at work. Oi, if you’re reading this, get back on that sofa and look after yourself – you never know when I might need your help again….

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Magical Alemtuzumab

The day I was diagnosed with MS, my neurologist told me that mine was the highly-active or rapidly-evolving sort. I had two choices. The usual disease modifying drugs or Alemtuzumab (Campath). It’s a drug used to treat leukaemia, and in laywoman’s terms, it strips out your immune system, killing the T-cells involved in the MS immune response.

There’s some pretty serious side-effects including a 1 in 3 chance of developing a thyroid problem, but it can halt the progression of MS for at least 10 years by reducing the number of relapses. A no-brainer for me – I was having relapse after relapse with barely time to catch my breath inbetween. It was like being thrown against a wall repeatedly. My body was battered and bruised, I couldn’t walk properly, I slept all the time and fell over a lot.

So, it was an easy choice and I know just how fortunate I was. I was lucky to be under a hospital which took part in the trials. It is still unlicensed for use with MS, but was given to me on a ‘compassionate basis’. All I wanted was to be able to see The Teenager off to university in a couple of years. I didn’t want him to be my carer, or to always be too tired to take him anywhere.

After five days in hospital, hooked  up to an IV, pumped full of chemicals and steroids, I was back home without an immune system for the next few weeks. Now, four months on, a miracle has taken place. I still get tired but I don’t need to sleep the afternoon away, I haven’t fallen over, I can walk (stumble) far better than before and I just generally feel, well, normal(ish) again. I haven’t had a relapse…yet. Touch wood. Don’t walk on cracks on the pavement. I still have a whole bag of symptoms, just not all at once.

So why am I angry? Well, the makers of this wonder-drug have withdrawn it from market, in a bid to relaunch it as an MS-drug and will price it out the reach of most health authorities. Big Pharma strikes again…..

Read Sian’s brilliant blog for more information – she’s pretty angry too.

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