The Invisible Flare

 

 

Dear Diary,

It’s officially CP Awareness Month. The world is turning green to support people like me, and I’m proud to share that part of my life. But today, my diary entry isn't about the green ribbon; it’s about the silent war.

I have Stage 4 Endometriosis.

Most people see the CP—the way I move and the physical effort of my gait. But they don't know what Stage 4 does behind the scenes. It’s the "Double Whammy."

When the Endo flare hits, it’s like a chain reaction. The internal pain triggers the spasticity in my legs, and suddenly, my CP is ten times harder to manage. My muscles lock up because they don’t know how to handle the deep, internal "grrr" of the Endo.

I have to be the Manager of two different wars at once. One is visible to everyone who walks past, and the other is a silent, deep battle with scar tissue and pain.

Today, the heat pack is my best friend. I’m sitting in my recliner, just trying to breathe through it and balance the needs of two very different conditions.

People ask how I do it. I don’t have a fancy answer. I just do it because I have to. One breath, one poem, and one day at a time.

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Support Groups

• Endometriosis UK: Leading charity in the UK. Helpline: 0808 808 2227.

• The Endometriosis Network (UK): Specialised support for complex decisions.

• Scope & CP Sport (UK): Advice on managing disability and health.

Note to international readers: Please look for support groups in your own countries. I can’t be certain of every single one, but you don't have to manage this alone.

My Journey with Endometriosis and the Dream of Parenthood

Day 1: A New Diagnosis

Dear Diary,

Today marked a significant turning point in my life as I received the diagnosis of stage 4 endometriosis. The weight of this news felt heavy, especially when paired with my existing struggles with clinical depression, general anxiety disorder, and mild spastic and ataxic diplegic cerebral palsy. I often questioned why my body felt like a battleground. However, amidst this chaos, I held onto a flicker of hope. My spouse and I learned that there was still a chance for us to conceive naturally, but the thought of the journey ahead felt daunting.

Day 30: Recovery and Hope

Dear Diary,

It had been a month since my surgery aimed at removing the damage caused by the endometriosis. The doctors’ optimistic outlook infused a sense of hope into our lives. My spouse and I made a conscious effort to focus on the positives, envisioning a future filled with the laughter and joy of a child. Each day, we celebrated the small victories, taking it one step at a time in this ongoing battle.

Day 90: The Waiting Game

Dear Diary,

Three months had flown by since the operation, and we had been trying to conceive naturally, clinging to our hopes of parenthood. Yet, each month, I found myself wrestling with disappointment and frustration. Thankfully, my support network proved incredible, reminding me that it was perfectly okay to feel this way. I worked on being gentle with myself, but the weight of the situation sometimes felt unbearable.

Day 180: Back to Square One

Dear Diary,

Today was a tough day. After six months, we received devastating news: the endometriosis had returned, and the damage was just as severe as before. It felt like a punch to the gut. My spouse and I embraced, both grappling with deep disappointment. The doctors suggested that our only viable option for having a child now was through IVF. Processing this information felt overwhelming, and I knew this new path would bring its own set of challenges.

Despite the setbacks, we refused to give up our dream of becoming parents. It was too precious to abandon. Together, we navigated this new chapter with hope and resilience. This journey taught me the true meaning of perseverance, as well as the incredible strength found in love and support. I felt deeply grateful for my spouse, who remained by my side through every twist and turn.

As I prepared for this next chapter of our story, I promised to document it with honesty and hope. For now, I took a deep breath and braced myself for what lay ahead.

With hope,

What A Week! My week with Covid19

 

It was a wicked week. This has been for me, I'm doing this off my phone as usual because I've been hit down with the dreaded lurgy. Otherwise known as COVID-19. I'm day six and I'm still positive. It's probably the worst thing I could think of ever, you know, the added issues. 

It has given my cerebral palsy and endometriosis problems. However, the problem I'm having is with my legs and the pain from the muscles and everything else, but it doesn't matter so much. I've had to give up my radio for a little while, just to make sure that I'm well enough. 

Because at the moment, I'm not able to do anything really without trying, not to scream in pain because it's so painful, what I wanted to do was that I could perhaps do things a bit more easily and it seems to be the only way that is helpful for me at the minute. 

Um, so I'm able to write and record at the same time. For this while, I'm resting as much as possible, but I've never had anything so bad. As this with COVID, it's ridiculous. You know, I'm lucky that I had the boosters and I had everything else. 

And with the conditions I have, it can be a lot worse and I wouldn't want this on anybody. It's not because my voice is a bit croaky. But I just feel very achy all the time in my legs. I've just begun to get my sense of smell back and taste. 

These are only just a few of the problems. I have an upset stomach because of it as well. I've had lots of other things as well. it's not pleasant but I know that it's gonna be over soon enough and I'll be fine. I mean having too much of anything breathing wise, despite having asthma, you know.

A Pivot in the background because of Cerebral Palsy and Endometriosis

 

Well Hello!!!

This is a quick podcast and blog post because of what has been going on around me at the minute. 

I want to do that more than anything, I want to make sure that there is enough content for everybody on both my blog and my podcast. Because it's a lot easier to do things this way.  Anyway, this is what I'm doing from now on and I'm gonna try and do it daily and skip prepping up so that you get it weekly on my phone and because it's not on the How can I put it? laziness as my energy goes as the day goes on and I end up just completely flagging.

I can edit it out and work on it so that I don't have to stress out over everything all the time and then I can add it as a post as and when I need it. I'm going to start with just a quick quiet one because I don't know if it's gonna work properly. 

Today. I'm waiting for a member of the family to finish and then I can get on with what they need to do with them. I'm looking forward to seeing them anyway. To make sure that everything is correct and everything else. 

This seems to be the most sensible way of doing things where I can edit the way things are for me and maybe I won't feel such a lemon sitting in the front room or the office, doing this with my husband around as well, but maybe I will, maybe I won't, I don't know!

Hoping everyone had a great Easter and in fact so that I can do more things here. Anyway, what I would like to do is explain a bit more about what is happening with the change around. I'll be editing things to make it into a proper blog as well, so it makes more sense. 

At the moment I'm just blurbing around and messing around with my system because it makes more sense for me to do it this way, even out and about because of the way things are here with me and purposely doesn't always make it easy for me to have a good day. 

And neither does endometriosis because of the way things flare with that as well. And endometriosis is just as bad as cerebral palsy because of the way they combine as well as being organized with exhaustion. There are days when I feel fine, but then an episode from endometriosis will flare and that will cause an issue, meaning that I won't have the energy to do anything. 

I'm thinking of doing things like this a lot more often and doing it that way. If I was to do more posts like this, it would make it a lot easier, I think. And I look as idiotic as I like a cafe dreaming and daydreaming about things. So here we go. 

And I'm quite enjoying this at the moment but I don't want it to go on too long if this is just going to be a beginning one so that everyone can realize that I am a real person and just like with everything else I don't always have time for everything although there needs to be some consistency. 

With endometriosis and cerebral palsy combining at times. It means that I don't have the energy so this might be a better way. Let's see what happens.