A basic human right has been denied

As the High Court in Dublin denies Marie Fleming, who has Multiple Sclerosis, the right to end her life with the assistance of another (see the news piece here) I reflected on the outcome of her case in a piece for the paper I work for ... it's posted below and I have to say it was an extremely difficult piece to compose. But I hope it gets people talking and thinking, not least about MS in general, but about the need for us, in the UK and Ireland, to see that assisted suicide, if requested, is the only dignified option in this situation.

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Whenever I hear of a person with Multiple Sclerosis applying to the courts for the ‘right to die’ my heart sinks. It brings home to me, once again, the harrowing side of the illness with which I have been diagnosed for nearly four years.

It pains me to know that someone who is dealing with the effects of MS simply cannot take anymore. 

The illness has many symptoms and many manifestations. Personally, I have relapsing/remitting MS. This means that I have periods when it flares up and times when I thankfully have some respite.

Last year was one in which I unfortunately seemed to be in more periods of relapse rather than respite. And while I had experienced pain before, the levels rachetted up a gear, my medication levels subsequently increased and there were weeks when I had to employ the use of a stick. 

As someone who prides themselves in seeing the positives of any situation, it has to be said that there were times in 2012 when I struggled to find my smile, my verve, my get up and go.

And looking back at those periods of ‘darkness’ there is no doubt that I can see why someone who is constantly in that pain/situation/place would sometimes find it difficult to see any light at the end of the tunnel.

From what I can gather Marie Fleming has found herself in that place. She described her situation to the court extremely eloquently, with the judges accepting that her “body has been ravaged by the insidious disease to the point where she is now almost immobile, that her life has been rendered miserable and that she suffers great pain and distress.”

To hear these words are enough to fill my eyes with tears because I hate to imagine that this is what may lie ahead for, not just me, but for many who have had the unfortunate diagnosis of Multiple Sclerosis.

And it’s even more poignant to know that someone who has faced the illness with such dignity is now saying ‘enough is enough’.

Now that this time has come, Marie is asking the courts to allow her to die with dignity, surrounded by her family, safe in the knowledge that they then would not face imprisonment.

However, this has been denied. This, in spite of the fact that suicide itself is no longer illegal in Ireland. Yet, because Marie is now so ill she finds herself incapable of carrying out that act for herself, she will instead be left in pain and distress until she passes away naturally.

I cannot deny that it’s a hard case to rule on, not least because the courts have a duty of care to those less vulnerable, but in the case of Marie Fleming I cannot help but feel she has been denied a basic human right.

The court itself said that she was “the most remarkable witness which any member of this court has ever been privileged to encounter” and I have silently sat today applauding her courage and determination in taking her case to the High Court.

It pains me to say it, but I believe if I was facing the same situation many years down the line, there is every chance I too would wish to die.

I can understand how the pain would take over. It creeps into every aspect of your life. It makes you weary, it never gives up.

The distress caused by a continued battle against the effects of MS cannot be underestimated. Its symptoms can affect nearly every part of your body. There is the prospect of immobility, loss of eyesight, spasms, bladder and bowel incontinence, nerve pain, fatigue ... the list goes on. 

Thankfully, it’s not a situation I currently find myself in, but the nature of Multiple Sclerosis means that there is no knowing what lies ahead. It’s an illness which simply does its own thing, and no matter how positive and upbeat I try to be, there is also no knowing if the situation Marie Fleming finds herself in would eventually come to my door too. 

I would like to think that if it did, I would be allowed to die in peace and with those I loved at my bedside. As the law currently stands that’s an impossibility.

Ending on a high ....

As anyone who reads this blog, or knows me well, will know, this year hasn't been an easy one MS wise. Two relapses in six months at the start of the year knocked me for six. Then a period off Rebif, followed by a trial month on Avonex left my body not really knowing which way was up.
I struggled to come to terms with the medication options available, feeling that they were harder on my body than the actual MS. Side effects are a common problem with Disease Modifying Drugs and as hard as I tried to see the good they were doing, I simply couldn't function while on them.
It wasn't easy but after some discussion with my family and my MS nurse I made the difficult decision to simply stop taking any.
I've talked before about how it's a double-edged sword because there are people around the world, and the UK, crying out to be given the chance to take some form, any kind, of medication and they aren't always readily available. Yet I have never been denied any.
And now I'm turning them down.
But it's our local policy not to give MS patients regular MRI scans so I don't know if the 18 months I spent injecting myself  with drugs was even worth it.
I have always found this a frustrating situation. Surely a yearly scan would show if the lesions have increased/stayed the same? Then I might at least feel that every side effect was worth it.
Regardless, I have had to make a decision that feels right for me and my family. For now that means going without.
In recent months I have also managed to come off all of my pain-relieving meds which is brilliant. This proves, to me at least, that a relapse is simply that ... a blip, a knock-back, something I can, and will, overcome.
Those meds were essential to keeping me functioning but today I need none. To say that aloud is so amazing. To know that my body won't always let me down. That I can fight this.
But, more than that, it feels incredible to be saying that 2012 is, in fact, ending on a very high note.
In order to come off the DMDs but leave my options open, I choose to take what they call a 'pregnancy break'. This allows me to stay on the waiting list, so that when I decide that taking DMDs is once again right for me, I will automatically be allowed to start again.
And the reason I choose this option is because it wasn't far from the truth.
My husband and I have always made it clear that we wanted a baby brother or sister for Charlotte.
And, to our joy, that's exactly what we're doing!
I am 12 weeks pregnant, we had our first scan yesterday and our precious second child is due to arrive on 30th June 2013.
Sometimes the twists and turns of this road I am travelling on are hard to fathom. But this morning, as I write, I am clear that they have taken me on the right path. Yes, having MS is not ideal, but I am happy, I have a wonderful family and incredibly supportive friends.
Today, life is good.

Pregnancy and MS video for MS Society

My gorgeous baby girl will be two this Sunday, and she definitely isn't a baby any more. In fact, she has become a wee woman over the last month, chatting away, showing us who's boss and generally, full of fun.

There have been some temper tantrums to deal with ... but everyone talks about the terrible two's and I'm hoping that they don't last much longer!

It feels like yesterday when I was heavily pregnant with her and being filmed for the MS Society's Pregnancy and MS information video. In fact, three hours after the guys left my waters broke and Charlotte was born the very next day, a whole three days early.

They returned last year, as Charlotte turned one, and completed the filming, giving a more rounded view of what it's like for women with MS who decide to have children.

I had always hoped that the video would help others see that having MS doesn't mean you can't have kids. If anything, I wanted people to see that having MS wasn't stopping me from living the life I had always hoped for.

Yes, it was tough at times, and still can be, but what mother doesn't find parenthood hard going? 

I was very conscious that this was MY story, and therefore couldn't reflect the entire MS community, but I still believe that doing the film was the right decision. I have had great feedback on Facebook and Twitter and the film is something that I am very proud of.

It's available to view here ....

Living life

The MS Society magazine MS Matters had a great interview with a fellow MS-er recently in which she said that if she could do it all again she would "have fun while she could" and her words really resonated with me.
It has been no secret that the start of 2012 was very difficult, I went through two successive relapses and suffered quite a lot of pain. But thankfully  in recent weeks I have been feeling much more like 'myself' and have found that I have been able to do so much more than usual.
Fridays are a good marker for me because they are at the end of a working week and it's also my day with Charlotte. At the start of the year there wasn't much we could do without me feeling knackered or sore. Even giving her a bath was a chore.
But the last few Fridays have been so different. Besides giving her a bath I am able to wash floors, prepare lunch and dinner, bake a cake, do some drawing or crafts and still have energy left come 7pm.
To anyone else this probably doesn't seem too out of the ordinary but for me it feels like a miracle.
Today I was out gardening with Charlotte and Joe, a task I have avoided in the past, not just because of the hard labour required but because I can't stand dirt in my nails!! But the words of the interview struck a cord and I decided life was too short to sit watching. Instead I got involved. The sun was shining, Charlotte was running and laughing about with our new kitten, I was planting bulbs which will hopefully flower in the Spring ... it just felt simply lovely to be enjoying  life with my precious family.
So, while I can, I am striving to live life to the very best of my ability ... while I can, because no-one knows what tomorrow will bring.

PS. that also includes a weekend away with the girls for a hen do next weekend, where I intend to wear high heels, get glammed up and drink champagne. That's what I call fun :)

Pounds in the charity pot

It's happened again ... My blog gets neglected whenever I'm on my feet!
But, to fill any regular readers in, the charity evening was a MASSIVE success. I can't believe I'm saying it but we have raised just over £2400!!
We had initially hoped to get around £1000 so we are all completely overwhelmed with the support we have been given ... The money raised will go a long way to helping the charities.
The actual weekend was manic and I did worry that I would tire myself out but we staggered the organisation and apart from baking four cakes in one day everything else was fairly straight forward.
I had hmm-ed and haa-ed about giving a speech on the night but when it came down to it, it was hard not to thank everyone for coming, the local businesses who gave prizes and all those who helped make the night so successful.
And in typical me fashion I did shed a few tears. The generosity of everyone and finally getting a chance to say publicly just how much I appreciate and love my husband and parents, was simply too much!
But I am so glad I did. I hope everyone there got a sense of why I am so passionate about raising funds for MS Society Foyle and RAMS, the fantastic work they do and how vital it is that we support them.
The atmosphere on the night was so brilliant, everyone seemed to have a good time and the final 'closing' didn't come until nearly 6am ... Oops! But I sneaked to bed a good bit before then :)
With it proving to be such a success I think we would definitely host a night again, but maybe leave it a few years.

Getting up and at it

There's no denying that my blog has been taking a backseat in recent weeks. A relapse simply takes over. And then I always find that once it's away, leaving me alone, that I am so focused on getting myself back on my feet that there is room for nothing bar getting myself up and out! 
More than that, when I feel better I spend every waking minute I have simply enjoying life. 
There are two arguments in this regard. The first is that you do as I do, make the most of feeling good and go 'hell for leather',
The second is that you conserve your energy, basically reserving funds for when the next relapse strikes ... and that taking things easy prevents one in the first place.
Of course no-one quite knows if either argument is better than the other so in essence no-one is 'right' but for me personally, taking the second route would be very difficult.
When I have energy, I use it. Whether that be taking Charlotte for a walk, baking some cakes or going away for the day as a family, then I want to enjoy life as best I can, when I can.
Family and friends are constantly telling me to rest and sit still, but honestly, you can't teach an old dog new tricks! 
So, as I am feeling relatively 'well' these last few weeks, Joe and I have decided to host a charity night at our home, complete with a marquee, live bands, a raffle, lots of food, plenty to drink and a bucket-load of fun :) 
It has all been organised in the last two weeks and takes place next Saturday, so it's all come together in less than three weeks! And I have to say, I have been overwhelmed by the generosity of people so far.
For starters, the bands that are playing are giving their time for free. The marquee has been provided by a colleague of Joe's. And the raffle prize list is so long it would take me all day to list them, but they include meals out, cinema tickets, hair and beauty vouchers, bottles of drink, an artist print and signed books by Irish authors, including Marian Keyes! 
Next weekend is going to be a busy one, cooking up a storm and entertaining but it will all be worth it once the final figures are counted up and we can donate much needed funds to two Northern Irish MS charities .. MS Society Foyle, which is my local MS Society branch, and Race Against MS (RAMS), which is outside Belfast, and where I go for hyperbaric oxygen treatment (a holistic approach which I feel gives me a boost).
Both charities do outstanding work, and the staff work tirelessly to help those diagnosed with what can be a very scary chronic condition. 
I'm so delighted to be finally giving something back. All I wish for now is some decent weather for the night itself! Wish me luck. 

What a rollercoaster

Funny old thing, this MS. One minute it has you completely on the floor, albeit sliding slowly onto it, the next hovering somewhere in middle ground, before a quick push later and you're back on your feet.
And that's where I was at the end of last week, yet today I'm back on middle ground.
It's a never-ending rollercoaster, with the dips and highs appearing erratically and totally unannounced.
For weeks,  outwardly, I was the same old me. At work, keeping a house in order, looking after Charlotte, making sure she was entertained, educated, looked after, being a decent wife* ... need I go on?! 
But I was ignoring the fact that I wasn't actually very well at all. Far from it.
Instead, I was trying new medications, hoping for a quick fix, but not really stepping back and seeing exactly what it was I needed to be doing to help myself.
In the end, MS pushed me too far and I am nearing my second week off work.
Hard as it has been for me to take that time, today I am very mindful at it has absolutely been the best thing for me to have done.
But it has been a very frustrating time. Just five days ago I was about to attempt a day a work, convinced I was much better, only to find myself really not improved at all today.
And I'm the sort of character that needs to be at work. I crave the structure and the focus. But no matter how much my head is telling me I can do it, my body simply isn't playing ball.
I have spent the best part of yesterday and today either asleep or curled up on the sofa.
Gutted doesn't even cover how I feel today. 
But tomorrow I will be back at work. I need to try. Otherwise I might actually go slowly mad! 

*my poor husband may disagree but I am trying! 

(and this was supposed to post yesterday so it's a day late! ... So to update, I survived work ... just! ... Will update properly tomorrow!)