Chronically Ill & Fabulous

Because chronic illness is part of my story, not my whole identity.

[chronically-ill-and-fabulous]

Life has a cruel way of reminding you just how quickly everything can change.

Three months ago, two young people in my family lost their mum unexpectedly. Yesterday, they lost their dad following a tragic accident at work.

At just 17 and 23 years old, they have now lost both of their parents in the space of three months.

I’m not really sure there are words for that.

I’ve spent a lot of time on this page talking about grief, chronic illness and finding ways to keep going when life feels impossibly hard. One thing I’ve learnt is that we aren’t meant to carry these things alone.

I’ve set up this GoFundMe as a surprise to give them some breathing space whilst they grieve and begin to rebuild their lives. The funds raised will help to ease some of the practical worries that come with unimaginable loss and remind them that they have a community standing beside them.

Please don’t ever feel any pressure to donate. Sharing the fundraiser would mean just as much.

Thank you for always being such a kind corner of the internet and for showing up, not just for me, but for the people I love too.

https://gofund.me/10d608cf8

[chronically-ill-and-fabulous]

Sorry I've been a bit quiet recently... 👀

I've been working on something that's really close to my heart, so social media has taken a bit of a back seat.

But don't worry... I'm still following today's plan. 😂💙

Wake up. ✔️ Survive. ✔️ Back to bed... pending. 😴

Hope everyone's had a gentle day!

[chronically-ill-and-fabulous]

Chronic illness logic:

Can remember every appointment I’ve had since 2018.

Can’t remember why I walked into the kitchen.

Makes perfect sense. 🤷‍♀️💙

[chronically-ill-and-fabulous]

💙 The Mental Journey – Part 2 💙

Grieving the Person I Used to Be

One of the biggest things I learned in the coping with pain group came from my counsellor.

She explained that a lot of people living with chronic pain don’t realise they’re grieving.

Not grieving a person.

Grieving the person they used to be.

That hit me hard.

For years I had been fighting my body, fighting the pain and fighting the reality of my situation, but I’d never stopped to think about what I had lost along the way.

My confidence.

My independence.

The version of me that could make plans without worrying about the consequences.

The version of me that didn’t have to think about pain every single day.

When she explained it, everything suddenly made sense.

So I took the time to grieve.

To grieve my past self.

To say goodbye to the person I used to be.

Not because I wanted to give up, but because I needed to stop comparing myself to someone I couldn’t be anymore.

Only then could I start again.

Only then could I begin to accept the new version of me and take each day as it comes.

I still have difficult days.

I still miss the person I used to be sometimes.

But now, instead of constantly looking backwards, I’m learning to move forwards.

And that has made all the difference. 💙

Part 3: Learning that asking for help doesn’t make me weak.

[chronically-ill-and-fabulous]

Sunday is here and I’ve survived another week. 💙

Not every week is about smashing goals, being productive or ticking everything off the list.

Sometimes the win is simply making it through.

If you’re reading this, you’ve survived 100% of your bad days so far.

Be proud of that.

Now excuse me while I spend Sunday recovering from the week before Monday arrives. 😂☕

[chronically-ill-and-fabulous]

💙 The Mental Journey – Part 1 💙

One of the hardest things chronic pain gave me wasn’t pain.

It was guilt.

Guilt for cancelling plans.

Guilt for needing help.

Guilt for saying no.

Guilt for being tired.

Guilt for not being able to do the things I felt I should be able to do.

As the years went on, I carried that guilt everywhere.

I felt guilty when I couldn’t keep up.

I felt guilty when I needed to rest.

I felt guilty when people had to do things for me.

I even felt guilty for talking about my pain because I worried people were fed up of hearing about it.

For a long time, I thought guilt was just part of living with chronic pain.

Then I started attending the coping with pain group.

Listening to other people talk about their experiences made me realise something.

Every single one of us was being harder on ourselves than we would ever be on anyone else.

We all had different struggles.

Different limitations.

Different things we saw as our flaws.

But we all seemed to be carrying the same guilt.

That’s when I started to realise that guilt doesn’t have to be part of my life.

I’m still learning.

I still catch myself feeling guilty sometimes.

But I’m so much further forward than I was.

Thanks to a group of amazing women, I’ve learned so much about myself.

We’ve supported each other, learned together and grown together.

And for that, I’ll always be grateful. 💙

Part 2: Grieving the person I used to be.

[chronically-ill-and-fabulous]

Part 8 – What If This Doesn’t Work Either?

I started the back rehabilitation programme hoping it might finally be the thing that helped.

By this point I’d been through years of appointments, physiotherapy, medication changes and being passed from one service to another. I wasn’t expecting miracles, but I was hoping for something.

The programme itself wasn’t bad.

The people running it were nice, and for the first time I was in a room full of people who understood what it was like to live with pain every day. We all had different stories, but we shared the same frustrations.

In some ways, that was comforting.

What was harder was watching other people improve while I felt stuck.

I did the exercises.

I turned up.

I gave it a chance.

But instead of helping, I often felt worse for days afterwards. I wasn’t seeing the benefits other people seemed to be getting, and that started to play on my mind.

One session in particular sticks with me. My pain became so overwhelming during the class that I ended up having a panic attack in the middle of it. Looking back, I don’t think it was just the pain. It was the frustration, the fear, the exhaustion and the constant worry that nothing was ever going to help.

If physiotherapy hadn’t helped…

If pain management hadn’t fixed it…

And now rehabilitation wasn’t helping either…

Then what was?

I started questioning everything.

Maybe this was just my life now.

Maybe this was as good as it was going to get.

It wasn’t just the physical pain that was exhausting me anymore. It was the constant cycle of getting my hopes up and then feeling disappointed when something didn’t work.

The one positive was the people.

For the first time, I didn’t feel completely alone in what I was going through.

But physically, I was no further forward.

And that left me asking one question I couldn’t get out of my head:

What happens when you’ve done everything you’ve been told to do, and you’re still in pain?

Coming next: This wasn’t the end of my pain journey. But it was the beginning of something just as important – my mental journey.

[chronically-ill-and-fabulous]

💙 My Story – Part 7 💙

Whilst the coping with pain group was helping me rebuild my confidence, my physiotherapy referral turned into another battle.

I went into my first appointment with a bit of hope.

Looking back, I probably shouldn’t have.

I sat down and explained everything.

What had been found.

The scans.

Pain management.

The injections.

The medication.

The years I’d spent trying to get help.

She barely looked through my notes.

She did a quick examination, gave me a few exercises and told me to come back in six weeks.

Then she told me if I wanted to see her again, it would have to be five weeks.

I remember saying, “No, let’s just stick to six.”

The whole appointment felt like she didn’t care.

Like she didn’t believe a word I was saying.

Even though most of it was already in my records.

What really sticks with me is one thing she said.

“We all start getting a bit of back pain as we get older.”

I just sat there thinking…

Are you actually taking the piss?

At the time I was in my twenties.

I’d spent years fighting to be heard, had scans, referrals, pain management involvement and an MRI showing problems in my lower spine.

This wasn’t me moaning because I’d slept funny.

I left feeling completely deflated.

Thankfully, the second physiotherapist I saw was completely different.

She listened.

She took the time to understand everything that had happened.

And for the first time during that referral, I felt like somebody was actually looking at the bigger picture.

She referred me onto a back rehabilitation programme.

It wasn’t the end of the journey.

But it was another reminder that the right healthcare professional can make all the difference.

Because sometimes the hardest part of living with chronic pain isn’t the pain itself.

It’s constantly having to prove it’s real. 💙

Part 8 coming soon…

[chronically-ill-and-fabulous]

Pain: because apparently feeling bad in one place wasn’t enough. 🙃

0/10 experience. Would not repeat. Unfortunately, it’s a subscription service.

[chronically-ill-and-fabulous]

Good morning from someone who has absolutely no intention of facing the day. 😂🐾

Meanwhile, the humans still have responsibilities, appointments and a never-ending to-do list…

I think he’s got the right idea. ☕💙

Hope everyone has a gentle day today.

[chronically-ill-and-fabulous]

💙 My Story – Part 6 💙

By early 2024, my doctor had referred me for counselling.

This wasn’t my first experience with counselling. In fact, by this point it was probably the fifth time I’d been referred.

I’d done counselling before, but I’d never done anything like a group programme.

If I’m honest, I wasn’t expecting much. I thought I’d heard it all before.

The first counsellor I spoke to went through lots of questions with me and decided I needed a higher level of support.

I remember feeling quite shocked.

I’d done counselling before and never been referred on.

As she explained why, it suddenly hit me just how much my pain had affected me mentally.

Not just the pain itself.

Everything that came with it.

Years of being dismissed.

Years of not feeling believed.

Years of questioning myself.

Years of feeling like I had to fight for every appointment, every referral and every bit of support.

I realised how much confidence I had lost.

How little faith I had in myself.

How much the system had beaten me down over the years.

Then I got a call from the higher-level team.

Honestly, she scared me. 😅

During the assessment, she suggested I join a coping with pain group.

She also asked about alcohol and drugs.

I’ve always believed in being honest, so I told her that I smoked weed on an evening to help manage my pain.

She explained that I wouldn’t be able to attend the group if I was using it before sessions.

In the end, we made a deal. I wouldn’t smoke the night before or on the day of the group.

And so I started attending.

Two-hour sessions every week.

When they suggested the coping with pain group, I wasn’t convinced.

I’d been to counselling before and although it had helped at different times in my life, this felt different.

What I didn’t realise was that this wasn’t just about managing pain.

It was about understanding what years of pain had done to me as a person.

Those sessions didn’t fix my pain.

What they did do was start helping me rebuild myself.

They helped me understand my thoughts, my emotions and the impact chronic pain had had on my life.

Slowly, I started getting some of my confidence back.

I started trusting myself again.

Most importantly, I started learning how to fight for myself again.

The counselling journey was helping.

But my physiotherapy referral was about to begin…

And that turned into another battle entirely.

💙 Part 7 coming soon…

[chronically-ill-and-fabulous]

Being chronically ill is like having a subscription you never signed up for and can’t cancel. 🙃💀

[chronically-ill-and-fabulous]

🌧️ Morning!

The school run is done, the rain is doing its thing, and today’s sponsor appears to be… exhaustion. 😴

Some mornings are productive. Some mornings are powered by caffeine, determination, and pure stubbornness.

Today feels like one of those days.

Still, we’re up, we’re trying, and that’s enough for now. 💙

How’s everyone else’s morning going?

[chronically-ill-and-fabulous]

💙 My Story – Part 5 💙

Changing GP surgeries wasn’t the magical fresh start I’d hoped for.

There were definitely improvements, but the fight wasn’t over yet.

I had just started medication and was being reviewed regularly, but every appointment seemed to be with a different doctor.

One would tell me one thing.

The next would tell me something completely different.

One doctor suggested a medication I could try.

At the following appointment, another doctor told me I couldn’t.

It felt like I was constantly starting from the beginning.

After years of fighting to be heard, my anxiety around appointments became overwhelming.

Before every appointment I would worry about whether I would be believed.

Whether I would be listened to.

Whether I would leave feeling hopeful or completely defeated.

By this point, I would often walk into appointments shaking.

More often than not, I’d end up in tears.

Then I had an appointment with a doctor who changed everything.

I broke down.

I explained how I was feeling.

I asked if there was any way I could consistently see the same doctor because I couldn’t keep repeating myself over and over again.

He listened.

Really listened.

He answered my questions, discussed my medication properly and helped me understand my options.

For the first time in a long time, I felt like somebody was looking at the bigger picture.

Not just my pain.

Me.

We discussed my mental health, increased my antidepressants and anxiety medication, and he referred me for counselling and physiotherapy.

I have continued seeing him ever since.

Looking back now, I don’t think I realised just how much I was struggling at that point.

Everything felt too much.

The pain.

The appointments.

The uncertainty.

The constant fight.

I was exhausted physically and mentally.

There were times during that period when I didn’t want to be here anymore.

Not because I wanted to die.

But because I couldn’t see a way for things to get better.

Thankfully, I kept going.

And sometimes that’s all you can do.

Keep going. 💙

Part 6 tomorrow 💙

[chronically-ill-and-fabulous]

I had a whole list of jobs to do today…

My body looked at the list, laughed, and sent me back to bed. 😴🐈

At least someone in this house (the cat) understands the assignment. 😂💙

[chronically-ill-and-fabulous]

💙 Midday Check-In 💙

Well somehow it’s nearly lunchtime already. 😅

I don’t know where this morning has gone.

I had a plan for today, but as always with chronic pain, sometimes your body decides it’s doing its own thing.

I’ve learned there’s not much point getting annoyed by it anymore.

Some days I can crack on and get loads done.

Some days I need to slow down a bit.

Today is looking like one of those in-between days.

So I’m having a brew, taking things as they come and seeing where the day takes me.

How’s everyone else’s day going? 💙

[chronically-ill-and-fabulous]

💙 My Story – Part 4 💙

After my appointment with pain management, I was sent for an MRI.

Finally, I felt like things were moving.

The MRI showed problems in my lower spine and, for the first time, someone took the time to explain what that actually meant and what the next steps would be.

The plan was injections into my lower spine.

I remember feeling hopeful.

I had the injections and honestly… for two weeks it was bliss.

For the first time in years, I had little to no pain.

I can’t even explain how amazing that felt.

But then it started creeping back.

And when it came back, it felt worse than before.

I went back to pain management and had an appointment with the surgeon who had done the injections.

He explained that because the injections hadn’t worked for long enough, they wouldn’t repeat them.

Instead, they would start me on medication for nerve pain and discharge me back to my GP.

I remember hearing those words and feeling my heart sink.

Being discharged back to my doctor was the last thing I wanted.

I started crying in the appointment and explained my concerns about going back into the care of the doctors who had dismissed me for years.

To my surprise, he listened.

He encouraged me to change GP surgeries and, in his letter, reminded them to follow the correct guidelines for my care.

For years I had been reluctant to change doctors.

They had always been brilliant with my mental health, and I think part of me hoped things would eventually improve on the physical health side too.

But after that appointment, I knew something had to change.

So, at the first opportunity, I changed surgeries.

Looking back now, it was one of the best decisions I ever made.

Sometimes moving forward means accepting that what you’ve always done isn’t working anymore. 💙

Part 5 tomorrow 💙