Back writing ...

So much to tell, so little time.

But I’ll start at the top.

Daughter one started Primary Two this week, daughter two heads into nursery next week.

They both still feel like my babies but of course they’ve grown up when I forgot to watch!

Since Lucy was born in 2013 my writing and blogging has taken a back seat, and I miss it.

I’ll regularly formulate a blog post in my head and then it goes nowhere.

But Lucy is three now and the hard years are over – well, the sleepless nights are anyway.

So I’m back and seeing how this regular writing thing goes.

MS wise I’ve been generally well, although this week has been tough pain wise.

I’ve talked about this before but some MS doctors don’t believe pain is a MS ‘thing’.

Trust me, it is.

It disturbed my sleep last night and I’ve had no let up since I woke, despite the painkillers.

I’m getting on with it, because the girls still need fed, washed, dressed and taken to school while Joe is at work, but I wouldn’t wish the pain on anyone.

There’s other bits and pieces I’ll get to in the next post but for now I’m happy to be back posting and writing.

Keep with me. 

The dreaded relapse strikes

Totally gutted to be writing this but it's time to admit that I am currently in the depths of a horrible relapse. I guess one was to be expected but it's never easy when it hits.
And this one has brought with it new symptoms. Bleugh!
Basically my right arm, you know the one that I need for EVERYTHING, while still functioning, is painful and has this hard-to-describe dead-arm feeling.
And I know half of that makes hardly any sense but I'm putting that down to the equally horrible steroids that I've had to submit to - to try and fight off this bad boy before it has my arm totally useless.
Steroids are never good. Well, they are in that they are supposed to help kick the ass out of a relapse, but their side effects are notorious - hence the reluctance on my part to start taking them.
But, I'm nothing if not a pragmatist, and if the neurologist and my MS nurse says they're worth giving a go, then so be it.
Today is day two and I've been awake since 5.30am and in constant pain since the minute I woke up.
Sympathy is appreciated at this juncture, but, genuinely not necessary because, honestly, it's the sort of pain you get used to.
And I'm thinking that if it continues then that can only mean that it improves my pain threshold - and surely that means my next child birthing experience will be a breeze!
You see, ever the optimist.
Of course, they're also known for their ability to make you permanently starving, so I've all my nearest and dearest warned that I am NOT to eat everything in sight over the next 12 days. Pity I've written this while scoffing chocolates ... but I'm sick, so they're allowed, yes?!
And some of my Twitter friends with MS have warned me that they also induce a state of insomnia - a condition I suffered from while pregnant and which I would very much like to avoid because a mum with no sleep does not a good mummy make!
Finally, I'm all booked to go to London next week for gloriously girlie weekend, which I most definitely will not be missing. Under. Any. Circumstances.
There's nothing else for it. I will rest from now until then and let the steroids do their best work.
Wish me luck.

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.

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.

MS nurses are vital

Regular check-ups with the neurologist are part and parcel of having MS. I talked about the last visit here and it's pretty clear that I found the entire process unhelpful. But I had my first appointment post-pregnancy last week and because I am no longer with child I was able to get some help.

Most significantly, I have been given tablets to help with the neuropathic pain I continually have in my feet, especially the right one.

These, I have been told, can make you drowsy so I have been increasing my daily dose gradually and so far, just a week in, they seem to be helping. In saying that I have also been trying very hard to take things a bit easier and the change of pace isn't a bad thing either.

I have also been attending a series of talks that have set up by my local health trust for those newly diagnosed in the past two years. They have been really helpful so far and are proof that a dedicated MS team - in this case the Trust's two dedicated MS nurses - are worth their weight in gold.

There is talk that the current government may look to save money by removing funding for specialist nurses and I cannot stress enough how much of a mistake this would be. The MS nurses I have contact with have been a major source of support and information. Ultimately I believe that they save the NHS money in the long run because they help MS patients manage the condition before it gets so bad that they are admitted for treatment.

My aim over the next week is to write to my local MP and MLA's in an attempt to make them realise how vital MS nurses are - because no-one knows until they have to personally use them.