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.

 

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 😛

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.

 

 

I Want Another Baby

Let me start by saying, I already know how this post will end.

I just hope I am not alone in getting to that ending.

The girls are growing so fast. I know its a total cliche, but they really do grow up before your very eyes. 

I can still remember leaving the hospital with Liv and feeling like my undercarriage was falling out.

I can still remember holding them both in my arms for the very first time. The way they smelt and looked so perfect and innocent.

My girls.

But now they are 3 and 6. Now they don’t lie still, they don’t love cuddles, they don’t like to be sniffed and snuggled.

Nope.

Now they like to make noise, create chaos and make their presence very well known.

Don’t get me wrong, I love how they are now. But part of me misses those little babies. 

Part of me knows I can have one. I have all the right parts still. Just a little, well, looser?

I could just completely shake up our normal and do it all again.

I really could.

But I can’t.

I know the effects it would have on my MS, which in turn affects the whole family. I would be even less normal than I am now.

I couldn’t face the endless nights awake and I couldn’t let Ben do it all alone. My poor husband has enough to deal with.

I couldn’t suddenly stop all my medication and expect to be okay. And I couldn’t spend as much time going to appointments as I do now with a baby in tow.

As much as every part of me wants just one more. 

Equally those parts don’t.

It just wouldn’t work.

So yeah. I do want another baby. But I also couldn’t think of anything more debilitating to do to this family.

We will have to stay this way…

family

Why I Stopped Writing

This blog has been pretty quiet for some time.

As far as personal posts go.

And I don’t have any real explanations for this because I just don’t know.

I lost my voice. For so many reasons.

I wanted to shut the computer and forget I had put my life out online.

I went to memory classes to try and get my voice back.

Nothing.

I didn’t feel it, I couldn’t feel it. 

As far as my MS goes, it’s a lot slower with my Tysabri. But it is still progressing more. Slowly taking little things without me even noticing.

I felt like no one cared what I had to say.

Who am I anyway?

Who am I so sit and type out my life online?

I’m boring.

Then I worried about my content.

I have multiple sclerosis. And I am not shy about it. I want to talk about it.

Not for sympathy.

Not for people to feel sorry for me, I hate that.

But for the people like me, who feel alone. Who feel like they are abnormal.

Scared.

Frustrated.

Fearful.

I started this to help people like me. People who have a future but have no idea how it will pan out.

We can’t make plans, we can’t have dreams.

Both of these are normally dashed at the last minute.

So we live day to day.

We sit quietly and get on with the pain. Desperate to know we are not alone. 

I started this to make more people aware of MS and what it’s like to live a life with a degenerative disease.

It might not be glamorous.

It’s certainly not easy, but normal people, people like you, need to know.

You might have a friend with MS who is perfectly fine. And that is fabulous. But for most that is not reality.

We might tell you we are fine. But that is because we don’t want to bore you with todays list of symptoms.

Or a new fear that has resurfaced.

We just carry on.

I stopped writing through fear.

Fear of the disease.

Fear of people thinking I want sympathy.

Fear of people judging me

Fear of people just not caring.

Fear of waking up tomorrow having not made the most of yesterday.

But I can’t live in fear anymore.

I want to write.

I want to vlog.

I want to document our lives so my kids can read back and see I loved them. See what I was going through when I was singing nursery rhymes or playing tag.

To give them strength and hope.

I need to stand up and stop living in fear. I need to live for the now.

So if I should wake up tomorrow with the loss of my legs or arms, I can know I lived the hell out of the life I was given.

So there you have it…

miss

Dear you, you’re a mess…

Dear 15/16 year old Chelsea.


If your reading this it will enforce just how amazing you are. We have created letter time travel, we are in-fact incredible.


I know where your sat and what your doing. On nanny eve’s pink chair, listening to Norah Jones on repeat, crying and singing. I know future you is amazing. But seriously get up, pull yourself together and dump that loser of a boyfriend. He is making you look like a total loon. It is doing you no favours, he will keep doing it, he is simply a vile creature.


You will find someone else and he will make you very happy, so stop pushing those girlys away, put on some slap and have a giggle. Being 16 is easy, trust me.


Stop eating so much fudge from the sweet shop your working at, it will make you go up 2 whole dress sizes, yes TWO!


Talk to your best friend, she does not hate you, she will fool around with your current boyfriend when your not together but he is a loser and she knows this! If you had taken my advice you would have been well shot of him anyway! 


Please know all your womanly instincts are true, yes all of them. He will however make you feel like you are the one going mad but in fact he is the mad one who enjoys messing people up. He is a good liar and he will convince your friends you are insane, but one day you will talk to them and they will see sense, just like you need to do.


You will make up with your best friend, she is young too, we all make mistakes.


You will meet Callie, try not to loose touch for those few years, she ends up being there for you alot. She will however try and push ‘him’ off a ladder, I know you will stop her. To be honest he does deserve it. 


One day you will meet Kevin, go with it if you like, but he is a massive fool, he will force you into one of the worst situations ever. You will want to turn around, you almost will, but don’t, you do get another chance and it turns out to be amazing.


When you are 20 you will have sight problems that you will ignore, you really should see someone. I know you won’t. You do however end up with MS, yes ultra sucky, no it is no fun, yes its hard, but I will do my best to make sure you are okay. I’m still working on it.


Well I will end my letter by saying, pluck your eyebrows, dump the lanky tosser, go out with your friends and GET A LIFE! Don’t waste school arguing with friends and the lanky bloke. Have fun. Life at 15/16 is one big party! Love life and find yourself.


Kind regards 25 year old you, the more shaved tattooed, badly wired up you.


P.s Don’t drink the champagne off the fat boy, it has something in it. Don’t mix you drinks, purple sick is not cool.

This is an entry into the Legal and General #youngerself competiton.