Sometimes Even Warriors Need To Cry

I have been called inspirational, brave, a warrior and strong, I am none of those things.

I don’t see it how they do, I see it from the inside looking out.

It makes me feel like a fraud.

Truth is, I don’t deal with things well at all, I have pushed the disease to the back of my mind, secretly hoping its not happening.

I would happily trade with someone who has a curable illness, even the nasty ones, how selfish is that? 

I envy those people, I envy them because they have the chance to be normal again, to be better, I don’t really have that chance. You might say with certain treatments I do, but I don’t see it like that.

I see some of these treatments as a mask, especially the new ones, no-one knows what the long term effects are, for those few years of feeling well, no-one knows the shelf life, or what happens when you have to stop. When the time comes to take that mask of, you are simply the same person you were before, ruled by a disease that makes each day more painful and tiring than the last. 

That’s our future, that’s what I have to look forward to?!

It makes me want to not bother, stop the trying and become that person I am destined to be.

You see, sometimes even warriors need to cry, they need to doubt and they need to stop coping, just for a while…

Ergh, Is It Bedtime Yet?!

I. Am. Tired.

Not because I have been busy, no that would be easy. I am tired because I am full of drugs.

Today was day three of Copaxone, I am not going to keep count forever, I am sure the numbers will fall into the abyss somewhere down the line. But right now, its all new to me.

Today was the tum on my “bum fat” by this I mean love handles, but its joined to my bum so they call it bum fat.

It hurt, no, wait, it burned. 

Yup, Copaxone is a pretty owchy injection, the stabbing bit, I don’t really feel, its the after burn, that’s the real bitch.

Right now I feel quick sicky, got that horrible gaggy feeling at the back of my throat.

Yum.

I didn’t think injecting myself would feel this “okay” but I am really not fussed by the whole injecting thing, its the after bit I dislike.

My memory has been horrific. I actually forgot I had arranged to meet a friend yesterday, not like the “ow shit I am late” kind of forgot, I mean the realising at bedtime type of forgotten.

I am dreading texting her, like she’s gonna believe someone could be that dim?

Well, I am, I am a total knobhead. 

Had a catch up with my journalist yesterday (I forgot that too, it was her email telling me she was running late that prompted me to remember) She thought I was “dealing with it better” 

Yes, yes I am.

Has nothing to do with the mondo dose of anti-ds I take on a daily basis.

How do you explain that to someone you barely know?! :/

The Long Road Home…

I can still remember my Dads face, he held my hand the whole ride home, I morphed back into this helpless little girl, scared, alone and in fear for the future.

It was the day I was told I had MS, well more or less, the whole dotting the I’s and crossing the T’s bit takes time and alot of tests, however in the Neuros mind, it was clear.

That memory of the drive home, flashed back into my mind today, probably because we were driving down the same road!

It made me think.

It made me realise that I am still not living it. I am still not letting it in.

In-fact I am blocking it out, its been pushed to the “waaaayyy back” in my mind and I have no idea how to deal with the whole thing.

All I know is that my choice to stop the Tysabri and cancel all of my other appointments, was my way of telling it to fuck off. 

My way of shutting the metaphorical door and locking it right up.

I start Copaxone next week. Daily injections.

Some might say I have to face it everyday, however I don’t see it like that. In my crazy mind its a way for my treatment to become “normal” something I will include into my routine therefore it simply becomes the norm.

Although I am not okay with the fact I am not dealing with it properly, whatever the proper way of dealing with a lifelong, degenerative disease is, I know one day I will, because one day, I will have no choice.

Things That Make Me Go Awwww…

Do you know what I hate? I hate looking back, yes I know ‘what a horrible thing to say, however do I live with myself?’  Well before you gallop away, jump off your high horse, pull up a bale and listen.

I hate looking back over memories because they remind me of what I cannot have. Although I am still able to have children, it would do nothing but disable me more and it would not be fair on me or the family.

No accident happening here I’m afraid, its double bagging  belts and braces all the way 😛

You see looking back just makes me miss those early days, those little newborn grunts and endless cuddles. Watching them sleep whilst the sun comes up, I won’t get that again. 

Of course, like any other honest parent, some days I wonder whose idea it was to have children in the first place?! But then I also have those days when I would love to have another.

So I have decided to share a few photos, photos that make me smile but also make me want what I can’t have, curse my womanly wiles! 

Yup that is my boob!!
Yup that is my boob!!

family photo
us together

Story time!
Story time!

Aaawwww you would not see the last one now, there would be claws and screaming!

So, I will now always be a baby free zone! 

New To MS? My Advice To You…

It dawned on me the other day, people who have just been diagnosed with MS will read my blog. People who are fresh from the neurology office, have come home and reached for google, much like I did. 

That freaks me out.

Not in the stalkerish kind of way, no, in the ‘those poor people’ kind of way.

I really hope opening up my world of MS does not leave anyone freaking out and running for the hills?!

If you have found me and you have just been diagnosed then please, feel free to read but please remember, I am but one person with this disease and we don’t all feel it in the same way. 

My advice?

Well there are people out there who preach about cures and diet and positive shit, however I am really that not kind of person and  cannot for the life of me find a positive, I am the kind of person who is honest and open and I use this blog as my therapy. 

One lovely girl on twitter tweeted me last week, she had been diagnosed and said so far, finding me was the only good thing. It made me smile and was something I will keep with me, it made me see maybe people will find my inane ramblings useful.

If I could give any advice for someone starting this journey, it would be time. Time for it to sink in, time to get your head together and make sense of this new life. I won’t lie, its horrible and painful and at times lonely, good god I am nowhere near getting to grips with it or myself. However talking to people and writing it down has helped me let go of some things.

MS is hard, but then so is life..