Monday, 30 September 2013

And so it begins ....again

Wednesday heralds the start of my new treatment, Copaxone.
As mentioned in the previous post, this is a daily injection so it will inevitably impact on my life a touch more than previous medications.
However, I am embracing the routine and staying positive as to the rewards it should bring.
I would be lying if I said I wasn't nervous because of course I am. It will take a few days or weeks to master the art of the injection, and then there's also the feeling that this is all that is left for me to try at the minute.
There are other options licensed for use in the UK but they are mainly kept for those who relapse more than I currently do, or as a last line of resort once these initial DMD's have been tried with no effect.
So it's sort of like I'm putting all my eggs in one basket and hoping with all my might that none of them break.
It can feel sometimes that my body is already breaking. 
Small cracks are appearing on the surface. 
My upper torso currently has no feeling, I've mentioned the dead right arm before and of course the usual fatigue, pain and bladder problems have been well documented.
But I can cope with those small ailments, they have seeped into my everyday life with such ease that I am carrying them without realising.
It's mad to think that I am now used to chronic pain. It's crazy to know how willing the human body and mind can be to taking extra burdens onboard.
But I am proof that this is the case. 
Now I want to see if I can stop those cracks from opening new wounds.
I have to hope that Copaxone is that sticking plaster, for it seems that there is no healing cure just yet.

Wednesday, 25 September 2013

Focused and hopeful

Lots has been happening recently so I'm going to start with the good stuff. 
Firstly, I went along to the MS information day organised by MS Society Northern Ireland at Titanic Belfast (I'm pictured below on the replica staircase from the ship) - it was a really well put together day, with a hopeful and refreshing talk about research. So much is going on, most of which is funded by the MS Society, and I left feeling that a cure is actually in sight, and possible within my lifetime. 
That blows my mind.
To think that someone somewhere is working on a thought and idea that is going to give people like me a chance to live a life without MS. Incredible.

This day was also really helpful for my mum and aunt, who went with me, and left with a better understanding of the illness. I have been pondering whether I really want to start back on disease-modifying therapies (DMT's) given that they involve injections, again.
I also suffered so much from side effects when taking the last ones that I'm nervous about how the new ones may affect me.
But the research talk made it very clear that treatment of this sort is essential. 
It's simply not an option or something I should be pondering over.
My mum has been, justifiably, worried about me starting again but the talk made her see that I need to start sooner rather than later.
It helps so much when those closest to me understand the process and the decisions I am taking.

And that leads me very well onto the bad stuff.
When I say bad it's not really awful, it's just not lovely either! In short I will be starting back on DMT's next week. 
I've chosen to stay clear of beta-interferons and all of their horrible side effects and instead will be starting on Copaxone. 
The reason I didn't go on it in the first place is that it's a daily injection and that will inevitably impact on my life slightly more than the ones that are only 3 times or once a week.
But it has no side effects bar some redness and irritation around the injection site and I'm hoping I can cope with that quite well.

I've also been suffering with a good bit of pain. My legs in particular ache constantly and my right arm feels as though someone has punched me very hard over and over again. But I am walking fine despite the pain and generally getting on with a hectic life now I have two little ones to look after! 
It's lovely to have people tell me I look so well just 12 weeks after having Lucy but as I always say, 'Never judge a book by its cover'. 
Multiple Sclerosis is frustrating in this way in that most symptoms are invisible and trying to get people understanding the condition can be quite difficult.
I hope if you're reading this that you are slightly better informed :)

As ever, I will try my best to answer any questions so please feel free to comment - or connect with me on Twitter @catdoran

Sunday, 1 September 2013

Social media support

When I was first diagnosed I trawled the Internet to find people like me. I wanted to hear about young women who had lived a full and happy life despite the trials and tribulations of Multiple Sclerosis.
But I found it incredibly difficult to find an honest account of 'real' life following a diagnosis. It was really frustrating, especially as a journalist who spends most of my working life telling the tales of others. It was this lack of proper stories that led me to start this blog.
In the years since, Twitter and Facebook have become a part of everyday life and thankfully social media has introduced me to many others like me.
There have been times when I have felt down; demoralised - and all it has taken is a short tweet and within minutes there is support from a whole host of my followers.
Not just those with MS, but people who have interacted with me because of my children, or because of my work.
Their responses and words have comforted, reassured and encouraged me at various points, and for that I am always thankful.
To some extent I would like to think that these virtual 'friends' are also people with whom I would meet for a coffee and a chat if they lived nearby.
There are too many to name but the list is fairly extensive.
However, today I want to mention one in particular. She tweets under the name @innocentcharmer. But her real name is Kara. She is married to Ashley and they have three beautiful children, Grayson, Addison and Deacon.
We connected firstly because of our kids. Addison is a few months younger than Charlotte and Deacon was born just a week before Lucy.
However, we also have MS in common because her late grandfather had the condition and passed away when Kara was just two months old.
Kara is an incredibly inspirational woman. Her eldest son Grayson has a myriad of health problems yet no medical team can say exactly what it is he has. In essence he has a Syndrome Without A Name (SWAN). 
Young people like Grayson are few and far between; he is essentially one in a million.
As a result Kara & her husband battle on a daily basis to get access to the support and equipment he so desperately needs.
Last year they decided to raise funds themselves for equipment he needs, as well as the charity SWAN UK, by holding a huge fun day in his name. 
It has now become an annual event. But this year Kara touched my heart when she got in touch to say that this year's fun day would also have MS Society UK as a recipient of some of the monies raised, despite the fact that they desperately need to purchase Grayson a walker which the NHS will not provide for.
She has told me since that she relayed my story and circumstances to those who came to support Grayson, and many of them sent messages of support.
Tomorrow, on Facebook, Kara is hosting an auction to raise further funds for this year's pot - and it would be amazing if you would take five minutes, look at the prizes and if something takes your fancy, place a bid.
Naturally the highest bidder wins and every penny is going to brilliant causes.
Stories like hers, and the online support I get from people like Kara, are what make the new world of social media so fantastic.

If you want to connect with me on Twitter please pop over and say hello - @catdoran