Almost halfway there!

Ten days late but here's month four! I'll try harder to be on time this month.

Month four

One of the most annoying symptoms of MS that I have is one that's not exactly 'sexy'. Basically my bladder doesn't operate like anybody else's, if I need to go, I need to go and that happens a lot. In medical terms they call it 'urgency and frequency'. See, not very sexy.

It was one of the symptoms that presented itself WAY before I was diagnosed and the one that I was most thankful to have an answer for once I the diagnosis of MS was given. And I know that sounds a bit mad but honestly, I thought I was going mad before the diagnosis. In fact, I even had hypnotherapy because so many people had told me that my need to 'go' was in my head. 

And it wasn't. Well, not like everyone thought.

Because essentially it was my head, but it was just the MS lesions. My bladder wasn't behaving because the signals from my brain are all out of sync.

And once I got the diagnosis I was finally given medication to help.

Once a day I take a little blue tablet and in the time that I have been given it, my bladder mostly behaves. At least 98% of the time.

Now, in pregnancy, I have stopped taking the little blue tablets and while I know it's incredibly important for the baby, I cannot say that stopping the medication was something I looked forward to.

It gave me my life back and I don't say that lightly. 

However, as anyone who has been pregnant knows, your bladder is something that plays up and without my medication it has been doubly-hard to deal with. 

But thankfully, in month four, the symptoms seem to be easing.

For weeks I was getting no proper sleep because I was up every two to three hours and combined with the normal tiredness I was starting to get down about it.

So, it's great to finally be past that stage.

Otherwise, month four has been quiet. The baby is growing but my normal clothes mostly fit, bar my trousers which need an elastic in the buttonhole to make them stretch a but more! 

Cravings are minimal but I am eating more often. Smaller meals, but more often, because if I don't my tummy rumbles and I can't think straight. 

But generally this pregnancy is going well and for that I am incredibly thankful.

Photo courtesy of www.stephenlatimerphotography.com

We're having another baby! Months 1-3

It's so ridiculously late but I am hoping to blog every month about my second pregnancy so it makes sense to talk about the first three months before I catch up and post month four!

As regards planning this second baby, me having MS was definitely a huge consideration. First of all my husband and I had to decide how we would manage and when the time would be right.

In the 18 months following Charlotte's birth I was convinced that we would wait until she was at least at nursery before having any more. Kids are hard work and I had a tough year last year with two relapses hitting me hard in a six month period.

But as we reached the end of 2012 it became clear that health-wise I was doing the best I had for a long, long time.

I had already stopped taking any disease-modifying drugs, after feeling that the side effects were too difficult to manage, so when the discussion of a second baby arose I have to say we were both positive about taking the leap sooner rather than later.

MS is so unpredictable that it seemed silly for us to try and map out the future perfectly. Instead, we took my good fortune and relatively good health as a sign and decided that there was no better time than to have baby two.

When I fell pregnant with Charlotte I have to say I wasn't counting the days until I could take a pregnancy test, I just felt if it happened then great but with this one, I went through five tests, all coming up negative, before number six showed the faint red line we were hoping for. It was a strange feeling because I knew I was testing too early with the first five but I was so convinced that I was pregnant that I couldn't help myself! And when we found out it was an amazing feeling.

It felt, once again, that we had made the right decision, that falling pregnant so easily was a sure-fire sign that this baby was coming at the right time.

The following weeks were pretty tough. I suffered from morning sickness with Charlotte but this time I was nauseous morning, noon and night. I could hardly eat and even now, at week 20, I weigh less than when I first fell pregnant.

My body seems to do that though, as I lost quite a bit in my first pregnancy too.

The tiredness was also really tough but I think everyone gets that and I always take it and the sickness as a good sign that the baby is growing well! My husband was really good and let me spend quite a bit of the first 13 weeks in bed when I needed to rest.

We also kept the pregnancy much quieter this time, not really telling anyone outside of our close family until the 13 week scan and it was really hard.

But it was lovely to have the scan the week before Christmas and let everyone know at Christmas gatherings - and everyone has been so excited for us.

Cravings wise I haven't had many but in the early days I was eating whatever I could manage and unbelievably, for about two weeks, all I wanted was fast food.

I rarely eat at the chip shop or at McDonalds and the like, but I ate about six bags of chips over those two weeks, absolutely covered in salt. Very strange.

Then the week before Christmas we were at my husband's parents' for a lunch and I was suddenly hungry. I think my mother-in-law couldn't believe her eyes as usually I'm a small enough eater, but on this occasion I had about three helpings of potatoes.

My appetite was back with a vengeance ......

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.