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.

 

 

Is There Anyone Out There?!

Today was my appointment with my Neurologist.

He was running an hour late, which in crazy mind land is fine, we know there worth so we wait.Had it of been at the GP’s I would have been first to complain.

Funny that.

I went to discuss my treatment options, in hope I could make a real informed decision  I was hoping t leave with a clear head and with the right choice made. Never have expectations where MS is concerned. 

I have left feeling more confused when I went in.

I have the chance to see my amazing brain. I also had the chance of seeing my old and new lesions. It freaks me out to think how long they were there, doing there damage without me knowing.

I have three options. Try the weekly injection, an interferon based drug which has no risks but some fluey type side effects.

Next its copaxone, a different daily injection, which is not part of the interferon family however poses no real health risks.

Last is stick to tysabri, the monthly infusion. Yes it works, however it comes with health risks of its own. PML which could essentially kill you, someone has the be the minority, right? Next is the unknown no-one knows the effects further than five years, no-one knows if it has a shelf life. Then its the kidney infection side effects, I hate those. Last is the cannula bit. I have really poor veins, from years of prodding and poking.

All these things along with the girls and me mentally not being ready to face up to the fact I have to fight. I have to live with whatever choice I make, I have to live with the what ifs. 

Also each treatment opens a door. The interferon, should it not work would mean I would be eligible for the new tablet. The other two both lead to tysabri.

I am confused and frustrated with my confusion. I am lost and I don’t know where to turn. At the end of the day its my body and I hate the fact I have to pump it full of drugs for a semi normal life.

That’s another option in itself, nothing. Let it be,see what happens.

Whatever road I take it will change me, I will have to acknowledge the fact I have multiple sclerosis. 

Any comments welcome.

Today I feel like death!

Well here I am, day two since steroids finished and I feel like death. I was so impressed with how well I was feeling despite being FULL of drugs, but then last night hit and now I am totally feeling it.


Luckily I have had someone with me each day, its still got me thinking. 


I am a mum and I want to do all the things mums do every day! I do not want this week where im either hooked up to a drip or shaking so bad a can barely stand. I want to run around and do daft things and not have to rely on someone else for help. I already have to do this in other parts of my life! 


Therefore I have made the choice to not have anymore steroid treatments for my further attacks/activity. Part of me feels silly for saying it, but I hate the way I am feeling right now, I cant keep going through it all the time. I just wanted some relief from everything, some time to feel normal again. I guess this is what comes with having such an unpredictable ‘condition’¬†


For now I will wait for the side effects to finish, until I feel somewhat human again! 


Anyone whos been there, is there I would very much welcome some advice, well off I go to the land of nodd to find some of that missing energy! Night all x