Recovery Is Imminent!

So last week was fun. Spent most of it sleeping in bed, with a drip in my arm. Saying that, it did stay in for the whole three days, which was a big shocker to both me and the nurse!

The disappointment and drudgery of life is starting to go. I think I am finally taking control and getting back on track.

I guess when I was going through the rough patch I should have considered a relapse. It never really occurred to me, I guess the tysabri helps loads, but does not make me invincible. 

Probably need to remind myself of that from time to time :/

I guess thats the thing with a lifelong condition. Other people get to fully recover, be cured. But people like me don’t. We just get to have a little bit of normal before falling into a Multiple Sclerosis state.

Then we’re right back to where we started.

During my relapses I tend to always go into a little bit of a lost state. I sit and doubt myself repeatedly. Worry I will never again find my kind of normal.

But I do.

I just need reminding and reassurance from time to time.

So I guess that has been my last few weeks, and contributes to my continual silence.

A silence I hope to break, eventually. Right?!

Feeling Bare

For the first time in around 7 months I am feeling bare. Blank, achey and full of the symptoms I worked so hard to get rid of.

A relapse.

A word you associate with alcoholics or drugs users, but one that is used to widely in the medical world.

 re·lapsed, re·laps·ing, re·laps·es

1. To fall or slide back into a former state.
2. To regress after partial recovery from illness.
3. To slip back into bad ways; backslide.
A falling back into a former state, especially after apparent improvement.

The perfect term to describe the pain. 

Today I visited my neurologist, I needed his okay for steroids to speed up the recovery cycle for this relapse. My Neuro is one of the nicest medical professionals I know, bar my MS nurse and Hannah from the hospital. He always knows what to say and completely understands this illness. He knows my request for “sleep” means “please medicate me so I can sleep” 

A harsh reality of MS is that we cannot be cured, but we can have access to some amazing substances to help us manage. I don’t believe humming a lot and eating organically will ‘cure’ me or anyone with MS. I believe in managing my symptoms and taking the necessary drugs to ease the pain, the lack of sleep and relentless depression.

People often forget, its going on below the surface. You might think you are ‘cured’ but in reality, an MRI scan could reveal an entirely different story.

Anyhow, Monday sees the IV team coming to the house so I can have my three day IV steroids.

Monday I treat my first relapse in 7 months. I am gutted it happened as I was doing so well. But at the same time, I know Tysabri only stops the frequency of the attacks. It doesn’t stop them all together.

So I did well to get this far. Right?


To Pee Or Not To Pee?!

Yeh, this is a post all about piss, pee, wee, whatever you want to call it and whatever makes you more comfortable. So since my last relapse a few weeks back my whole peeing mechanism has not been the same, no I never knew we even had a peeing mechanism either, well, you know what I mean!

Whilst on my steroids and over the recovery period, all my muscles ache so bad, even the slightest touch hurt so bad but the worst thing was my bladder, every single bloody time I went to pee, my bladder refused to listen to my head and it was mega owchy the more I waited, I’m guessing that’s because I was pushing the old bladder against its will.

Who knew going for a simple piss could be so very complicated?

Its the same with the old bowel when on the roids, having a poo is literally like running a marathon, you would think I would shut the door at times like this.

Anyway, more recently things have got better, but in true MS fashion my bladder still likes to bend the rules and ignore the old brain from time to time, not emptying fully and then sneaking out the last little bit when you least expect it, thanks for that bladder, which makes going to the toilet an incredibly surprising experience.

Surprising in the way that I am 23 AND surprising in the ‘oh shit didn’t expect that kind of way‘.

Giving my daily life that extra, well, edge?!

Well, I guess I need to give the old pelvic floors a bash and see if that helps, really do not need my bladder emptying after pulling my trousers back up, now that would be an interesting story. Maybe I will still to the maxi dresses for now?