Turning My Back On Choices

I made a video recently about my current choice to stop my treatment. You can view that here.¬†Don’t forget to SUBSCRIBE ūüėõ

Anyway, I had my last IV, I am coming to the point I would be due back in for a top up in the coming weeks, I am coming to the point where I am comfortable with my choice.

Right now I can’t turn back without going back in to see my neuro, which is fine with me. I don’t want to go back. I don’t want to wait. I am ready now.

One of the things that is becoming far clearer to me is that the longer you go without the tysabri, the more you feel again.

The more you can feel those emotions, the more you can enjoy those emotions, the more human you feel.

I have to say I have always noticed how little I could feel or think for myself. Without struggling to understand or deal with the feelings in a “normal” way.

I am not overwhelmed by feeling happy. I can laugh until I pee and I can really enjoy the laughter.

Something that I have been thinking about more and more is having a break from any treatment. So I would push it back until after the Christmas season. So I can feel the season. So I can enjoy the whole thing. The sounds and the smells. The kids, the fun and all the love of my family.

I want to feel again.

I want to start the new treatment, but I want to spend a few months feeling and living in every moment. Before I feel like I am just going through the motions because my body is full of a drug that has so much control.

I can’t explain it. I don’t understand it, but I know that I can feel it.

I understand that I will be back in that wheelchair. That I will need help to walk, but I know full well I will feel every single moment. 

I guess I want to live side by side with my MS for a while. Before going back into a new treatment full of new feelings.

 

 

Anyone Want A Kidney?!

What is it with all these organ donation stories in the press these days? I understand there are so many people on the waiting lists for transplants, but I am not sure why a family would refuse to donate in the event of another family members death. Especially if they had a donor card?!

organ donation card

 

I am all for organ donation, I even have a donor card which I have had for some years. My brain may not be amazing, but I am pretty sure other parts of me are A-okay.

I would even consider donating a kidney if someone close needed one. After all, I do have two perfectly good ones, so for someone who has two dud ones, its only fair.

As far as my views go on organ donation, should anything happen to my two babies, well, I think if I could save another life, after having such a tragic loss, I would. The human body is such a delicate thing, I know this first hand, so being able to give someone else something so unique would be, well unique. 

To think there was still a piece of whoever I had lost, living a full life somewhere would be enough to bring a smile through all the sadness, even for a second.

As for the people who have a donor card and their other family members overturn their right to donate the organs, I think this is wrong. If this was my child’s, husband’s, sister or any other relative, I would want to respect their wishes. After all, that was their choice and I believe no-one should take that away.

I don’t for one second think that anyone who has gone against¬†there loved ones wish to donate is wrong or mean, everyone is entitled to there own views and choices. I just think, for me, it would be the right choice.¬†

You?

I Do This For Them

Some people might read my blog and wonder why I hate having choices¬†, why I don’t just go with the ‘best’ or what they tell me to, not that they ever say “DO THIS” because they don’t, they tell me it’s ¬†my choice, that it is up to me.

Some might say I should take one and do it, because I have to think of my children. But really, thinking of my children is what I do day in and day out. Why don’t I want the new top treatment? Because of the fact no-one knows what happens in the future, the shelf life or side effects. The future is where I am aiming to be, it is where my children will emotionally need me the most.

I don’t want to be the Mum who grew an elephants trunk because she took that risk. (That is for you Meg)

So to the people who read this and think ‘selfish’ need to read back and think again.

If I had MS before having my children, I am not sure I would of had children, heck I am not even sure I would even still be here. But I am and that is for them, I want to make the best choice for them, because if it was just me there would be no choices.

Being an MS’er¬†as they call them is still very new to me. It is still really raw and not something I feel comfortable with. I admire people who are okay but I am not sure I will ever be the happy go lucky, dealt that hand kind of person,

It’s not in my nature. I am stubborn like my Grandmother. (That’s for my sister :P)

I am dealing with it in my own way, taking my time and learning as I go. Fighting with my body every single friggin day, all with a smile on my face and a crude joke on the end of my tongue.

Usually because if I am not smiling, least I can make someone else smile!

No I don’t find it easy and I certainly don’t find it easy to explain to someone. MS is hidden and so are many of my symptoms, but that does not make them any less real. Just more difficult to fight and almost impossible to explain.

I would find it much easier to be falling over all the time, least then people would know my body doesn’t work properly!

So please never assume these choices are selfish, because that could not be further from the truth!

 

I Need To Find Myself….

I really need to do it, I need to change things and find myself.

My blog has given me and outlet, a place to reach other people like myself, a chance to help other young people with MS, its something I feel really strongly about, something I intend to carry on.

I have gone through life just wondering and not knowing, making stupid choices, working in a fudge shop and going up two whole dress sizes, working for a lingerie home party company, talking dildos and wearing thongs with piles (not myself I swear) 

Now I have found something I love, something I am good at.

My depression began around 4 years ago, not that I knew it. When you start facing it, its like walking into a dark tunnel, no light, just darkness. It all starts with taking that step, four years on I have taken many steps, however its a journey I will always be on. 

I will deal with it my way. I will cry and shout, I will have regrets and I will rely on the girls more than I should, but I will always try and do my best.

I have been going round deliberating the choices I have, although I hate them, I still have them and I think the reason I am unsure about which treatment is right is because, right now, I don’t want one.

Only a few weeks in and I am covered in bumps, lumps and bruises. I want to be my own control, I know that makes no sense, but I just want to find out who I am first.

I will never be okay with my disease, but I’m stuck with it, I need to face it before I can fight it.

Choices, I Hate Them.

Choices, big or small, we all make them everyday.

For me though, choices have become something I loathe. Some might think its good to have them and I am lucky to be able to make them, however that’s not how I see it.

The choices I have to make are different. They each present a different way of life, different side effects, different ways of living, different outcome. 

Each one of these choices has an effect on me, hubby and the girls, each choice changes things for all of us.

None of the choices I have made so far have been easy and trust me when I say they are by no means set in stone, I have the control to say no, after all, its my body.

Sometimes I wish I had no control, I wish someone would take over for a while and make the choices for me, for us.¬†Lets face it, I am in no way “easy to live with” but right now I am just sick of making the choices.

I am able to change my mind and stop. I am the one who has the last say, but then I am the one who is messing up and changing my families life, they ave to put up with me, my MS and all the choices and changes it brings with it, how is that fair? 

With thoughts of stopping medication creeping in, I also have huge feelings of guilt, selfishness and resentment.

Resentment for the fact I have these choices, ones I can change and ones I can stop. Resentment that although its all on me, I still really have no control over the disease itself. 

How did I get here?