Getting over the grief

There's a general theory out there that everyone who suffers a loss goes through five stages of grief in order to come to terms with what or who has gone.
In fact, many people believe these stages are more applicable to someone facing an illness or disease rather than someone who has actually lost someone.
And I'm starting to understand why.
Because while I always state, very clearly, that I am still 'me' - of course having MS has changed me and coming to terms with 'Catherine who has MS' hasn't always been an easy ride. There's no doubt in my mind that I've grieved for the me 'before'.
So, in case you're wondering, the five stages are denial, anger, bargaining, depression, and acceptance.
The stages don't always work in this order and a few theories I've had a quick read at also say that they can pop in and out at different times.
For me, unbelievably, the first stage I encountered was probably the one most people face last, and that's acceptance.
On diagnosis I was very stoic, determined and I suppose this is because I finally had a reason for the previous months (even years) of feeling unwell. Finally I had a name for everything that I thought I was imagining.
But acceptance doesn't mean that I haven't had days of the other four stages.
In fact, I started writing this post some weeks ago when I was going through a 'low' period - I guess that would be the depression stage. And there wasn't anything that triggered it. I simply felt incredibly emotional and teary-eyed. And it was horrible.
Along the way I have also had moments when I've felt the anger bubbling under the surface until I can hold it in no longer, shouting out in pure frustration, 'Why me?'
Because I am bloody angry. I'm angry that no matter how hard I've worked, how much love and care I've shown others, that this blasted illness still choose me.
It's often after an angry moment that the bargaining stage takes over. In my mind I can hear myself saying, 'Maybe they did make a mistake. Maybe if I can just be a better person the MS will disappear.'
But in my heart of hearts I know it's going nowhere. I mean, the NHS wouldn't have me injecting myself with very expensive medication if I didn't have MS now, would it?
Ah, and in creeps the denial - without me even realising it.
If only it were true.

MS medication and me

I've said it before but I'll say it again, every person with MS is different.
And that's not just personality-wise but medication-wise too.
But for me, the MS medication round looks something like this.

Every morning I take Tovias 4mg ... I call this the wonder drug because it controls that oh-so-lovely issue of my bladder. In essence it deals with urgency and frequency. So basically, I'm not rushing to a bathroom every five minutes, and as my husband will tell you, this has made long car journeys a LOT more pleasant!

During the day I also take three doses of Neurontin 600mg. (Also called gabapentin) This is usually prescribed for epilepsy but in MS patients it is used to help with neuropathic pain. In my case, that's pain in my feet - something I have moaned about in the past! I've been on this for just three months but already it seems to be working. It's a hard one to work though because you have to build your dosage up slowly and it takes time to get to work. But I have gone through that early stage and thankfully it is taking away some of the more intense pains, especially at night.

Finally, I inject Rebif 44mcg, three times a week using the RebiSmart device (pictured). This is a disease-modifying-drug (which I spoke about before here) and I have to stay hopeful that it's doing what it should be - reducing relapses. This is hard to quantify because there's no knowing if the relapse wouldn't have appeared with or without the drug. But the science says it works, my neurologist thinks I should be on it, and so I'm giving it a go.

The RebiSmart device makes the process a whole lot easier than it would have been when the medication first came on the market. I never have to see the needle and once it's fitted correctly I place the machine on my arm, push a button and it does the injecting for me. I will say it doesn't make the injection any less uncomfortable but it helps.

Finally, I take Ibuprofen 400mg on the nights I inject. This helps stave off the flu-like symptoms that the Rebif ravages on my body. These are something that not everyone will exeprience but they are also a well documented side effect. On one occasion recently I forgot to take the Ibuprofen and it was a night I would not like to repeat any time soon. The pains are unlike anything I have ever experienced before, they rush into every bone and muscle, making a decent night's sleep a distant dream.

So there you have it ... MS medication and me.

Then and now

Today I'm wearing a gorgeous top from the Barbara Hulanicki range for George at Asda. Okay, so I know I got it from a supermarket but this woman founded Biba and the 12 piece collection she has put together is not only bang on the money style-wise but also bang on the money price-wise!
Anyway, I digress.
Three years ago, I would have paired it with the highest heels I could find and walked confidently into work.
This morning, I have had to make do with a pair of sensible flats.
More to the point, I specifically bought the top, not just for its fashion credentials, but because it has lovely long arms - to cover the injection sites you see.
How times change.

Putting myself out there!

The day before I had Charlotte I was filmed by the MS Society for their new website. It has been almost ten months but the media team's hard work has finally come to fruition and the site is now 'live'. It's a fantastic resource of information for anyone diagnosed with MS, and their family and friends too.
Aside from the films, they have re-designed the site so that it's easier to get around and I have to say it's a brilliant 'makeover'!
So, if you fancy a watch I feature in four seperate films - I've posted the first below. It also comes with a disclaimer in that I had Charlotte 24 hours later so please excuse the bloated look!
Can I also say that it's taken me over a week to post this here because I was so embarassed when it first appeared - so please, be nice :)

MS and the 'disabled' label

As someone who has MS it will probably come as no surprise to you that I am in possession of the ubiquitous blue badge. I applied for it for various reasons but the main ones include being able to have close access to shops and when my bladder is at its worst, a toilet.
When I go shopping I always plan my shopping route in advance so that I can complete all of my chores without walking too far unnecessarily or doubling back on myself - thus reducing the pain in my feet.
And it's a running joke with my mum that I know every bathroom in Derry (and I may add, every other town or city I have ever visited, thanks to my good memory for such information).
But using the blue badge is not something I enjoy or have become comfortable with.
It sound silly but I always feel that people who don't know me stare when I get out of my car looking, to them, perfectly healthy. There's no wheelchair or stick - and to many that means I'm not disabled as the badge suggests.
I guess it's an education exercise but disabled means so much more than not being able to walk unaided.
Recently I got into my car and was about to reverse out of the space when a man stood behind me waving a disabled badge. Naively I believed he simply wanted the space after me and was claiming it as his own before anyone on the busy road drove in after me.
But, as I reversed he shouted over, 'You know you're parked in a disabled space?' - with a tone that implied that he didn't feel I should be there. I instantly leaned over, waved by own badge back at him and replied, 'Yes, I have MS if you must know'.
The incident really shook me up. He was aggressive and frankly, rude. To his mind, he had seen a happy, healthy looking young woman walk up to her car with some friends and promptly drive away. He obviously hadn't bothered to check I had a badge displayed and jumped to his own, wrong, conclusions.
This sort of attitude is hard to change. And for someone like me who hates being labelled 'disabled' anyway, it just made me feel about two feet tall.
I don't expect everyone to understand what it's like to have an illness like Multiple Sclerosis but I certainly think that a touch of compassion now and again wouldn't go amiss.
As for judging me without knowing me, that's another issue altogether and one I'll talk about further another day.

Born This Way ...

... as in, the Lady Gaga song.
I can't get it out of my head this week, and Charlotte is probably sick of hearing me sing it, but it has got me thinking.
Was I born with MS mapped out in my DNA, or is it something I have had the unfortunate fate of getting later in life?
It has to be said though, with no answer forthcoming, I'm happy enough to face it head on regardless. The real question is, would I have lived my life up to diagnosis differently if I had known Multiple Sclerosis was around the corner.
Put simply, probably not. Some would think I would have looked after myself better, got lots of Vitamin D, ate less saturated fat (not because they say this helps people with MS, just because it would help my mid-rif!) and maybe drank a lot less wine - but in actual fact, if anything I would have done the opposite.
If I had known I was going to have MS at 27 I would have travelled extensively, been more spontaneous, and cared a hell of lot less about what people thought of me over the years.
Since I didn't have the benefit of hindsight I'm still pretty satisfied of how I spent my days pre-MS - laughing, dancing, drinking, all surrounded with friends and family - but most significantly, I had the fortune to meet my husband before I became 'Catherine who has MS'.
I mention this because I know some people with MS have talked about how hard it can be to meet someone post-diagnosis - telling them, when to tell them, what to tell them - and I'm so blessed to know that J fell in love with me - the woman born just the way I am now, just without the label of MS.
After all, I'm still laughing, dancing and drinking with my family and friends - nothing has fundamentally changed, I just face the world a little bit differently.

Nobody's perfect

I've had a tough few weeks. Generally, I give the appearance of someone who is coping very well. I'm back at work one day a week to ease myself back into the madness that is local newspapers, there are washed and ironed clothes in everyone's cupboards, the floors are mopped and we are well fed.
But inside I'm struggling.
And the reason is very simple. I expect too much of myself.
Everything may be done but at what cost. Today I think it may be my sanity.
Because my brain is on overload. You know those days when you your mind is on a constant loop ... well that's been me for the last fortnight. And quite frankly I'm doing my own head in!
It's easy fixed - I just need to use a diary better - but instead I've been running everything that needs done over in my head ... again, and again, and again!
The situation hasn't been helped by the fact that I haven't been great MS wise (feet playing up, horrible fatigue, flu-like pains after injections) and Charlotte has been up teething leaving me with unbroken sleep and a body that simply doesn't want to do what my mind is telling it.
I'm also pushing myself physically. This weekend I'm off to Sligo for one of my best friends' hen night - which I wouldn't miss for the world - but it involves a two hour drive which I know will drain me. So as a sacrifice I'll just drink less champagne :)

Then next weekend we're off to Scotland to visit my family - in what will be our first family holiday. And I am really looking forward to it but the organisation required is sort of freaking me out.
So, in order to redress the balance the solution seems obvious - I need to chill out!
I also need to remember that I'm not always going to get everything right, done on time or perfectly - but that that's ok. After all, no-one gets it right 100% of the time.