https://linktr.ee/kylahollywood

Michaela Hollywood MBE, Belfast (2025)

28/01/2025

Some personal news!

Despite the wild ride that 2024 was, in December I took up the role of Head of Policy and Operations at the Centre for Independent Living NI!

I’ve always been passionate about defining independence properly, and the ethos of the Independent Living Movement strikes at the heart of who I am.

I’m working with such a devoted staff team and a passionate community. I’m so excited to work on ensuring choice, control and independence for disabled people.

New year, new adventure!

Come along for the ride.

14/10/2024

All 14 days of IV Ertapenem is finally complete!

Ertapenem made me feel so, so tired. I still have a fever which can be normal when you’re colonised or it can be a side effect of the carbapenem antibiotics. So a watch and wait to see if my fever falls.

Hopefully it will so I can have my hot chocolates!

I have a few days of rest now before the NI Open snooker and a little bit of fun. I haven’t really been able to get excited for it just yet as my health has stolen so many fun things from me this year.

Really, really want to be able to see Judd Trump & Neil Robinson in action. Especially Judd if he’s still doing amazing things on the table. It’ll be a bonus if I catch Oli Lines too, finally.

After my tenth course of IV antibiotics alone since December I think I’m ready for something purely me for fun!

This is what medicine does in my life. It lets me live life to the very fullest. It’s transformational.

10/10/2024

The Aurora seems to have fallen in love with Northern Ireland.

The last 3 times I’ve been on strong IV antibiotics they’ve been visible from my house. This is the first I’ve been able to see them.

We talk a lot about silver linings in life. I like to think of it as coloured linings.

Life has pulled me back into my pre-20s era of infection pattern. Short breaks between each infection. Trying to pounce early so I don’t end up seriously unwell. But also trying to live a normal life in between. It’s tough.

But it’s also a reminder to take every good half hour for what it is. A good half hour. Play the game, get the colouring pens out, go to the almost empty cinema.

It’s also about planning for the best. Book the tickets. Make the plans. Look forward to things. You deserve the opportunity to be at the big things.

IV Ertapenem has me SO TIRED all of the time and my obs are still a bit wonky at times. But we are improving and im looking forward to both boccia and snooker next week all being well!

So. Take your multicoloured linings and run with them.

30/09/2024

So… I’m going back on IV antibiotics. This time we are aiming for a 14 day course of Ertapenem.

I grew Serratia again 2 weeks ago in my lungs. The hope was that the Colomycin antibiotic I was on would keep it in a state of control. But unfortunately over the 2 weeks since growing it I’ve just steadily been getting more unwell.

Right now I’m what I call functional. I’m sick, yes. I’ve got quite significant shortness of breath, tiredness, occasional wheeze, and an increasingly productive cough combined with worsening appetite.

But I’ve been able to work and function using cheats. That includes resting at all costs. Only expending the energy I absolutely have to. Using assistive technology wherever I can.

The last 48 hours I’ve really hit the proverbial wall. Today one of the doctors I’ve seen a lot this year as an inpatient called to discuss a plan, but also to make sure I hadn’t deteriorated too far over the weekend.

Tomorrow I’m going to hospital for my first dose of Ertapenem for safety. Then all going well I’ll be at home for 14 days of treatment.

The doctors and microbiology are keen this squishes Serratia under our control. So we’ll probably test to see how we are doing more regularly for the first little while.

I’m counting my blessings to get to stay at home this time. I’ll take that any chance I can - sensibly of course. But I knew this was the likely outcome today. So I took the chance over the weekend for a very small shopping trip during which I came home with…

GLOWSTICKS!

And I have the NI Open snooker in Belfast to look forward to a mere 5 days after my antibiotics should finish. So I’m appropriately motivated to put the work in yet again and get better.

By my count this is my 10th course of IVs since December. Not including orals. I need something to look forward to!

I know too I look totally fine here. I have a fever, sore head and hadn’t eaten all day. You never know what people are going through. Be kind.

Sharing this now too so people know I might be a bit under the radar for the next few weeks! Still reach out if there’s anything you need me for but replies may take a little longer.

17/09/2024

My time outdoors has been so limited this year. So I’m grabbing all I can before the heat turns far too cold.

I am still learning what life looks like living with Serratia. I’m still building up my strength after 4 infections to fight all at once and 3 heavy duty antibiotics. And in many ways I’ve been building back since December - not just August.

But I’m determined to learn to live with this.

One of my favourite animations is An American Tail. When Fievel sings Somewhere Out There he’s talking about reuniting with family. But for me right now it makes me think of reuniting with myself. Finding the energy to get back to things I love. To be able to colour in without coming out in a rash, or go to the cinema and see the film I want to.

And - of course - decorate my wheelchair for Christmas.

I’ve had ten months of illness. It feels cruel that just 2 years after being colonised with pseudomonas I must now learn to live with Serratia too.

But learn, I will. And I will find a path to the things I love to experience and do. The things I am may shift a little, and may look different.

But I am still enough. Still unconditionally worthy. Still me.

I need a bit of space to come to terms with what this change means and to get myself as fit and resilient as I can. But with the team I have around me - all underneath the same bright star, if you will - we can light the skyways for me to do what I want again.

So yes. Naturally I popped outside in the dark tonight to look at the harvest supermoon.

Something I could do because my body always has a fever now. So the cool of a late summer night isn’t going to totally freeze me. Silver linings exist.

So this is your reminder to take the time to do the things you need to and learn the new ways of your body. Life is still to be lived.

10/09/2024

I had a fantastic first post-hospital day out today.

At Hillborough Castle for a Garden Party with the Duke and Duchess of Edinburgh.

It’s always lovely to get a chance to reflect and talk about my origins in disability rights. But I also had a lovely chat with the Secretary of State for Northern Ireland about how putting disabled people with lived experience at the heart of policy making always makes policy more impactful.

It was a big first day back out of the house. I was honoured to be there. But I’m also aware every conversation is an opportunity for positive change.

29/08/2024

I love my ears. Squiggly bits of skin. They’re medically referred to as bilateral microtia and atresia. I just say I don’t have ears. But I’m quite happy with them. They’re mine.

And if someone has a problem with my ears, that’s their problem. Not mine.

Since I was very little my neurologist would regularly ask if I wanted my ears fixed. I’d always reply by asking what needed fixed? There’s nothing wrong with them, to me!

But recently technology around hearing aid implants has excelled, as have surgical techniques. My hearing aids currently have to be worn on a hair band. If I could have magnetic implants, that would be my preferred option.

But also… I’m supposed to be wearing glasses and can’t keep them on. Because my ears can’t hold them.

So today I met with the first surgeon I’ve seen since childhood about getting implanted without needing to go to sleep. We’d use numbing injections to operate.

The surgical team are about to kick off a new implant, and they’re willing to do it under local anaesthetic. And they’re speaking to plastic surgery to get me prosthetic ears so I can wear glasses - and so we can implant around any prosthesis.

It’s rare I do exciting medical appointments but this is definitely one. Small steps in positive directions to make small but profound changes to my life. To make it easier and better.

But… I’ll always love my ears. Always.

21/08/2024

SMA Awareness Month has literally been flying in. And I wanted to take a moment to reflect.

When parents are given a diagnosis for their child, it’s often a hope sucking moment. Because all the hopes you have for your child change. But at that moment in time I can understand why people think they’ve disappeared instead of changed.

But as someone growing up with the pretty rare combination of illness and severe physical disability I learnt two lessons very quickly.

Life is for living at ALL times.

People will assume the life I live is somehow “less” than they consider to be normal.

When I was in hospital this year, life was different. But it’s still to be lived. And while the staff now know me well I loved chatting about all the things I get up to in life.

Education & work. The funny situations I’ve found myself in. Nurses teaching me how to turn bin bags into hula skirts, doctors dogs being my best friends. Being in the privileged position to make life better for others.

But what still frustrates me most is when disabled voices are actively ignored. You’d think with the groundwork I’ve done, and the recognition I’ve had, that NEVER happens to me.

But it does still happen. The assumption is that disabled people watch life pass through the nearest window. That our voices aren’t to be heard.

If we face a greater challenge, I’ve yet to find it. Because disabled voices are essential.

Having SMA means assertiveness, knowing my worth and having a support team that is guided by me are all part of every day life. But I wish we were all heard without needing any of those things.

I spent September 2019 touring America, learning about how marginalised young people there were being supported. I applied thinking I would be silenced.

Far from it. I was heard, empowered and enabled. I spent 3 incredible weeks with amazing people in wonderful cities. I even survived the least accessible public transport system in the world - the subway.

Life is ALWAYS for living. Whether you’re living it up in New York City or Room 11, ward 3B in Ulster Hospital.

Disabled people are unconditionally worthy.

20/08/2024

I AM HIRING!

2x permanent posts working nights & evenings with flexibility between 16-20 hours per week.

No experience necessary but the successful candidates will have willingness to learn new things, able to work in a team, work to own initiative and have a strong work ethic.

Start date is flexible to suit successful candidate by mutual agreement. Pay is currently £12.75 per hour plus additional benefits including parking and paid breaks.

To apply PM or email with your CV or cover letter.

20/08/2024

Put plainly I am so glad to be home.

But being home is also a bunch of juggling and management. I’m far enough away from the onset of the virus to now feel the tiredness of recovery. I know I need to eat to aid recovery from the 3 bacterial infections and to control the colonisation I have.

And I need to maintain regular nebulisers, physiotherapy and airway clearance.

…alongside normal life!

I’m just thankful to have treatment available and I’m working on figuring out this new normal.

Today though I managed to work and wash my hair in the evening. Definitely a win and something that made me feel a bit more human.

Reminding myself to be patient. Recovery comes with time, commitment and work.

10/08/2024

Tonight is the Annual SMA Candle Lighting in memory of all those we have lost and all those still with us we hope for.

I’m in hospital and definitely do not have the access to a candle battery or flame.

But I want to mark this one nonetheless. SMA creates the conditions for these repeated infections I’ve been having and I’m also aware that so many have been lost this year. Our incredible community leader MJ being a huge loss in particular.

So I’ll raise a mug of tea, and a bag of IV antibiotics. We got this crew. And to the ones we miss, your names are on our lips tonight.

14/07/2024

I am hiring!

Apply now to join my super team of Personal Assistants.

I’m recruiting at least 2 Personal Assistants to cover some weekday evenings and Thursday, Friday and Saturday nights.

Duties include:
Assistance with all aspects of personal care including the use of a hoist
Turning and repositioning for comfort overnight
Light housework to keep environment clean and prevent infection

All contracts will be a minimum of 16 hours per week. Night shifts are 10pm - 8am and evening shifts begin at 4pm or 5pm depending on the day chosen.

Option to work extra shifts to cover annual leave for other staff members during which you can accrue extra annual leave.

Start Date flexible and agreeable with successful candidate. Full training provided and paid. Rate of pay is currently £12.75 per hour. 5.6 weeks annual leave per year.

To apply email michaela_hollywood@hotmail.com with your CV or covering letter.

Michaela Hollywood MBE

28/01/2025

14/10/2024

10/10/2024

30/09/2024

17/09/2024

10/09/2024

29/08/2024

21/08/2024

20/08/2024

20/08/2024

10/08/2024

14/07/2024

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