Tag Archives: Alemtuzumab

May 10 2013
20 Comments
Symptoms and Treatment

Stumbling In Crutches

imageI am feeling rather sorry for myself. As I write, there is a pair of crutches next to me and I am floating among pink, fluffy clouds thanks to the strong painkillers.

Yesterday I fell quite badly, and to be fair, it wasn’t due to the MS, it was me not looking where I was going.

Unfortunately though, my MS treatment has left me with a tendency to have out-of-proportion bruising, so my leg is now a fabulous riot of colours and has swollen so much I can’t get my jeans on. To top it off, I think the shock of it has increased my nerve pain temporarily so I’m buzzing and tingling all over.

The bruising must be impressive as The Teenager keeps wanting a look at it, saying ‘ewwwwwww’ before taking another look.

All in all, not the best of days. Thank goodness for family and friends. My partner-in-crime at the museum trip (see post below) came up trumps and after making numerous phone calls, tracked down a pair of crutches I can borrow. My mum is carting away loads of laundry for me and drops round food supplies, flowers and news of the outside world.

So, yet again, I am whiling away the hours at home, not studying, not writing up my essay notes and chomping obscene amounts of Maltesers and Bacon Bites. Ho hum. I have worked out how to switch on the fire with a crutch without getting off the sofa, I count down the hours to my next lot of painkillers and The Teenager has had two takeaways in a row.

I’d like to say I have learnt something from this experience, that I will never, ever take my health for granted, but hey, didn’t I just go through all this recently with the whole MS saga? I don’t need any more time out to re-evaluate the direction of my life. Been there, done that, drowned my sorrows.

So I’m off to have another pity party and pop more painkillers. My mum is at the supermarket buying me a tub of prunes. Life goes on…

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Apr 30 2013
14 Comments
Daily Life

A Back-Handed Compliment

But You Look So Well‘But you look so well.’ A loaded sentence most of us with MS hear at some point.

I hear it a lot, along with ‘but I heard you were ill’. The complex nature of my, so far, mostly hidden illness.

What they don’t see is the work that goes on behind the scenes. Yes, I look fine for that hour or so. No, they don’t see me taking ages to get ready or lying on the sofa afterwards. Or the long evenings spent alone at home, too tired to go out with friends.

I’m proud that I still want to look my best, but not fitting the physical perception of the ‘sick role’ can distort the view people have of me. I’m used to it, or so I thought until Saturday.

I was at an MS meeting. At the end of it, we gathered around in groups for a coffee. I was talking to a friend when suddenly a woman I had never seen before pushed in and without any greeting, asked if I had MS.

‘Um, yes?’

She looked me up and down before saying, ‘but you look so well.’

It was the ‘but’ that threw me. She didn’t say, ‘great to see you looking so well’ or ask how long I had been diagnosed. I felt immediately guilty, as if I had to justify myself. I had always thought that I was ‘safe’ with other people with MS – no need to explain nerve pain, fatigue or the general fed-upness that goes with MS.

I told her that I had been having relapse after relapse and had been offered Campath (Alemtuzumab) treatment and touch wood, no relapses since last May.

‘Relapses? Hah. I never had any’ she said.

‘Oh. Is that good?’

‘No! I’ve just gone downhill. I have primary progressive MS. We don’t have any miracle cures. Nothing can be done for us, all the research, all the meds go on the ones with relapsing remitting MS.’

Awkward. What do you say to that? I made my excuses and wandered away. I wasn’t in the mood to be challenged. I went home deflated and upset. I did see it from her viewpoint, but it was the abruptness of the exchange that threw me. I don’t want to justify myself to other people with MS. I have to do it enough to everyone else.

I went home, dragged my duvet onto the sofa and fell asleep. 4pm and the day was over.

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Apr 06 2013
6 Comments
The Teenager

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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Mar 13 2013
4 Comments
Work and Studying

Getting Away With It

How depressing – new research from the School of Social Sciences at Cardiff University found that employees with disabilities are twice as likely to be attacked at work and experience higher rates of insults, ridicule and intimidation.

Sadly, I am not surprised, given my own experience (read more here).

The research shows 12.3% of people with disabilities or a long-term illness were humiliated, gossiped about and ignored, compared to 7.4% of people without disabilities.

Similarly, 10.5% of disabled people had been attacked at work, compared to 4.5% of non-disabled people.

Any bullying at work is unacceptable, but the bullying of people struggling to make a living whilst coping with the challenges a disability brings is simply heinous. Why does this happen? Does it start in the school playground when anyone ‘different’ is singled out for ridicule – the child with glasses, the kid with spots?

A bully is essentially a weak person exerting power and authority over those they deem even weaker than themselves to boost their own fragile ego. The person being bullied may find it harder to fight back if they are also disabled or have a long-term illness – in my case, I was adjusting to my diagnosis of MS, the implications it would have for my life, family and career and also going through Alemtuzumab treatment. At times it felt as if I was fighting a war on several fronts.

Why did I put up with this treatment? The daily humiliation tore at my soul and took me down to the darkest depths of despair. One evening, shortly before I was sacked, I sent The Teenager to a friend, sat on my sofa and cried myself hoarse. I was utterly defeated and broken. I had reached my absolute limit. Three people had systematically destroyed my self-confidence and belief in myself in a way no diagnosis of MS ever could.

I stayed as I was determined to remain in work, at least until I found a better job. I accepted the treatment meted out to me, I plastered a false smile on my face which barely hid my pain. Inside I was dying. Five months on, I am slowly rebuilding myself. The damage has run deep, the humiliation deeper.

I will return to my former self and I will be stronger.

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Mar 05 2013
21 Comments
The Teenager

The Teenager Speaks…

I’ve got a pretty special guest blogger today – my son, The Teenager, asked to get involved and this is what he wanted to write, no editing:

When I first found out my mum had MS, I didn’t know what it was so I thought it could’ve been anything so I was very worried.

It was the day that I was coming back from London after seeing my dad and instead of my mum picking me up my mums friends did and I didn’t have a clue where my mum was. I was told she was ill but I didn’t realise that she was in hospital.

I was dropped off at my Nana’s and she explained what was happening. I went home after my mum came back and because of the MS she couldn’t speak properly and we had a good laugh about it, taking the mick. It was still worrying me though because I didn’t really know what was totally going on.

But as time went on things got better I realised that there were worse things in life than MS and that my mum didn’t have as bad a MS as lots of people do. Me and my mum have met lots of lovely people through my mum having MS which is a good thing. In October 2011 when I was 12, we went to a MS march in the city centre which was a lot of fun and there were lots of nice people there.

I have learnt a lot of stuff through my mum having MS. Of course I still worry a tiny bit but nowhere near as much as I did. My mum’s best friend, the builder, has helped a lot and it is nice to have him as company.  After a year of my mum having MS a lot of good things have happened. My mum has been very lucky to have Campath (Alemtuzumab) treatment in the local hospital. It did sound scary at first but it helps my mum a lot.

I am hoping that in the next few years me and my mum will meet a lot more people with MS and go to lots of different MS based things. In the town centre the shopping centre has been sponsoring the MS society and they are selling ‘MS wrist bands’. A lot of my friends are now wearing these and it is nice to see support shown for this and hopefully more people will start to wear them.

Overall even though my mum has MS she is still the coolest Mum ever and nothing will ever change that.

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