Because Holding On Is Frightening

I am sat in the midst of a relapse, wondering what I can do to make things better.

What can I do to be better?

What can I do to stay better?

Nothing.

I just have to sit and ride it out. I have to take my abundance of tablets and ride it out the best way I can.

Opting for the steroid tablets meant I didn’t need the fuss of an IV nurse for 3 days. I didn’t have to keep my line open for three days (not something I have been able to do yet)

So I sit, not making a lot of sense, thinking about the last week.

The message. The phone calls, The waiting,

The waiting is the hardest part.

I no longer have help at the end of a text message.

Thats been the worst part.

The not knowing. The in-between counties, non-sharing hospitals and doctors who, sometimes, feel like they just do it to annoy me.

The panic attack.

The depression.

The not coping.

The new plans.

The place I want to be.

The place I can’t be until I have ridden out the storm once again.

It seems like the more I strive to better myself the more it pushes back.

Sometimes, just sometimes, holding on is the hardest part.

Sometimes I just want to let go. Sometimes I don’t have the strength to push on.

Because it is exhausting.

Just living is exhausting. So adding the battle of overcoming your own bodies attempts to shut you down can feel impossible.

Scary.

But I am one of many people who live this.

We live quietly. Never quite being understood.

We are not dying of a disease.

But I know some days we wish we were.

Because that would be easier for someone to grasp. To understand.

Instead, we go on living. In a body that has no clue how to act or react.

Not knowing what pain or grief tomorrow brings.

But living anyway.

As best we know how.

Holding on at the fingertips.

Just getting by.

 

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?