Cabin Fever

Cabin Fever

I’m home!! I’m actually home after 3 long, hard weeks in hospital. I’ve spent over 5 weeks in hospital over the last 2 months and I’m 10 weeks on bed rest this week.

Every day I sit in my bed looking out at the sunshine wishing I was out in it.

It’s been so difficult sitting in bed for so long. There’s so much I want to do. I have a lovely P.A called Sebrina and she has been coming to me for the past four and a half years. Every day that she has come to me I’m immediately up out of the bed ready to go somewhere for the day. Whether it’s going to the shops, going to the hairdressers, going to the doctors or even just going out for a Costa!! Love my Costa latte!! I’ve missed it a lot!! ūüėā But for the last 10 weeks she’s come in and just sat with me all day. We’re both very chatty but there’s only so much you can say over 10 weeks! It kills me that my whole life has been turned upside down because of my stupid “Butterfly Skin”! ūüė™ I miss going out for the day with her. The little bit of independence I had is gone. 

A few months ago I was invited to a friends wedding in Roscommon. I actually met them at The Kerry  Challenge in Dingle a few years ago and we have been friends ever since. I feel so lucky to have such great friends. They have visited me in hospital and everything. It was their wedding 2 days after I was discharged from hospital so there really wasn’t a hope of me going. The day of the wedding I sat in my bed thinking “I should be there, has EB taken over my life”?. It was the perfect day for a wedding but I sat at home crying because I was in pain and crying because I so wanted to be at their beautiful wedding. But what could I do? My health has to come first. 

I know I may be rare, I may be different, I might even be an inspiration but I promise you that’s no fun for me. I miss my life. 

I have to say my care has been amazing since I’ve come home. Public Health Nurses have been coming to me for the past few years to do the bandage change. But since I’ve come home they’ve stayed with me for 4 hours for the bandages – that’s a long time to be pulled and poked at! They’ve been so good – they’ve tried to help in every way. They know my skin so well and they do think I’ve impeoved a lot. But still I say, somethings different, I know it, I just can’t put my finger on it. 

I promise I’m not gonna use this blog to whinge all the time, I know I’ll be giving you all some good news soon‚ĶI swear!!!! 

But as you all know‚ĶI’m not me if I’m not up and about!! 


Alive & Well

Alive & Well

I’m so glad to report that my operation has been completed and I’m alive and well! Ok, maybe not well, but as good as to be expected. They took 12 biopsies from my entire body. So as you can imagine I’m in a lot of pain. Biopsies are taken usually to test for cancer, but, don’t panic, that’s not all they test for. Biopsies show lots of different things – Bacteria, infection, virus…they can show up anything and I’m hoping they’ll show the reason why my wounds aren’t healing.

I have to say the night before the operation I was so anxious. I really didn’t know how it was going to go. I really thought I wouldn’t sleep at all but surprisingly I did! Usually, the night before a surgery I wouldn’t get a wink of sleep! I was fasting from 4am so I was taken off my overnight feeding system and was allowed to take my medication in the morning. Mom and Sebrina (my P.A) came up bright and early so they distracted me for the morning and that was exactly what I needed.

I was taken down to Day Surgery on Thursday afternoon at 1.30pm and to say I was nervous is an understatement! To hand my full control over to doctors and nurses is so scary. I’m so used to being in full control and knowing whats going on that was very hard to let go of it. I panic an awful lot during the anaesthetic too so it’s a very frightening time for me…but I tried to stay calm.  I think all the teams around me were nervous too. There was lots of different teams called in to help – we had 2 EB nurse specialists, the dermatology team, the pain team, the anaesthetic team, the doctor to do the biopsies, and the theatre nurses – they were all in the one room…so it was a little busy!! I felt very important!! The anaesthetic team had never put someone with EB to sleep before so I know they were worried themselves – but it all went very well. They had to cover my face in bandages as the oxygen mask would have done a lot of damage to it, they were also very concerned that the intubation tube would do some damage to my throat but there was nothing they could do about that. We could only hope.

I came out of theatre at 5.30pm and got back to the room at 6pm to my patiently awaiting mother. I couldn’t believe I was in surgery for so long – I didn’t expect that! But they did a lot to me, they did a full bandage change (which on a normal day takes 3 hours), they thoroughly cleaned all my wounds with a Milton wash, burst all 20-odd blisters, and most importantly they took 12 biopsies. They took 4 from my left foot, 2 from my right foot, 4 from my bum, 1 from my right hand and 1 from my left underarm. But thankfully, I wasn’t in a huge amount of pain when I woke up. The Pain Team were heavily involved in the operation so they had me well dosed up for when I woke up in recovery.

But I seemed to sleep most of the day. I barely even remember my mom leaving at 7.30pm! I was so glad I slept and wasn’t sick after surgery. Sometimes I can be so unwell, it’s awful. With all the different problems I deal with on a daily basis, the one thing I really hate is being physically ill, I just can’t cope with it. So I was delighted to just sleep after the operation. I slept straight through to the next day and woke with lots of pain, mainly in my bum and feet. They were so sore.

I was so afraid that we would have to do another full bandage change on the Friday morning but I got away with it! Thank God!! There’s no way I could have done another full change. I would’ve been in bits! We did do my bum, just because it needs to be done every day. They used Callostat on the areas where they took the biopsies. Callostat is a bandage that stops bleeding and you’re supposed to leave it on til it falls off but in some areas it was so soaked in blood that it fell off after the first day!! I didn’t expect that – that doesn’t usually happen.

So, now its Sunday evening and I’m here wondering what the results will show. Actually, “wondering” isn’t the right word, it’s more like I’m “worrying”. I’m hoping that the results come back on Monday or Tuesday. I do know the Pathologist got them on Friday morning and they were marked ‘Urgent’ so fingers crossed they come back soon and all A – ok. I will only be climbing the walls til I get them back – it’s not the easiest few days. But a Chinese takeaway and the repeat of First Dates is whats getting me through tonight!!

And I’ll just stay positive until then…..


Here we go again…

Ok, so I’m losing my mind. I came back into St. James Hospital on April 21st. I just wasn’t coping at home, even though I ¬†was on bed rest.¬†The pain started to get really bad again and the wounds weren’t healing the way they should be, so I had no choice but get admitted back into hospital.¬†

Every day is so hard to get through. Yesterday was the most horrific bandage change. We started at 11.30am and we finished at 3.30pm and it was 4 hours of pure torture. My bum, feet, thighs and hands are the sorest at the moment. The constant pain is unbelievable. My feet feel like they’re re¬†on fire all the time and when I try to stand on them they just start to pump blood – so you can imagine changing the bandage is awful. Yesterday though I had to bathe my feet in a basin of Milton…I think it nearly killed me. The stinging is terrible, it feels like 100’s of needles going into your feet all at the same time. That’s the only way I could describe it. I squeezed someone’s hand to try to help but it made no difference (surprise, surprise!). I had to leave them in the basin for 15 minutes. The Milton is supposed to kill the bacteria and infection in my feet.

I keep thinking “I can’t do this anymore” I’m physically and mentally exhausted. I’m wrecked in the evening, I can barely hold up my head, but yet I can’t sleep when it’s time for bed. Surgery is planned for May 5th to do 7 biopsies and basically an MOT on my little body. Tomorrow is another full bandage change – I’m not embarrassed to say I’m absolutely dreading it. I’m terrified.

“I’m gonna keep running cause a winner don’t quit on themselves” – Queen B

“I’m gonna keep running cause a winner don’t quit on themselves” – Queen B

Hi I’m Emma. I’m the Patient Ambassador of DEBRA Ireland – a role I cherish. I have RDEB (Recessive Dystrophic Epidermolysis Bullosa). EB means my skin is as fragile as the wings of a butterfly. There is no cure or treatment and the only way of controlling the wounds is constant bandage changes every second day. Right now I feel like this has to be the worst skin condition known to mankind. Oh, I’m also 31 years old.

I’ll be honest, I’ve no idea how to write a blog but I’m here lying in bed at 12.40am listening to the new Beyonc√© album and I thought “sure I’ll give it a go”!

I was born with EB so I’ve always dealt with open wounds all over my body and lots of pain. But the last few months have been a nightmare. Wounds have exploded all over my body and the pain is completely out of control.

I was admitted to hospital 6 weeks ago with my body covered in infection. I was brought in for 2 weeks of intense IV antibiotics and a massive amount of pain killers‚Ķincluding 3 forms of morphine & ketamine. Yes – Ketamine – That is a horse tranquilliser! But would you believe me if I told you that they didn’t even touch the pain?! There were days that I was hysterical during the bandage change – I was crying, screaming, shaking‚Ķand even praying; “Please someone, just help me”. I even had everyone else in the room crying – my mom, my P.A, the EB nurse and a student nurse. That’s so not fair. I don’t want to be the reason people are so upset.

The infection cleared up and I was eventually sent home on condition that I was to stay on a months bed rest. Those words nearly killed me! I’m not a bed rest kinda girl! But what could I do? I wanted to get better and I wanted to go home. I quickly got bored, I didn’t want to be in bed. I wanted to be out and about meeting people. That’s what I love to do. It’s so frustrating. My mind is so active but my poor body just won’t keep up. I had so many plans for when I was better. But that wasn’t to be – I quickly deteriorated at home.

There’s no words to explain the pain that I endure on a daily basis but at the moment the pain seems much worse. My skin is so fragile now, it seems to break at the slightest¬†touch. There are some mornings I’ve woken up and the bed is covered in blood from just turning over during the night. What am I going to do? I really don’t want to live like this. But I have no choice.

So it’s now 1.20am and I’m here back in my hospital bed listening to Queen B herself and one line has jumped out to me‚Ķ‚Ķ “I’m gonna keep running cause a winner don’t quit on themselves”.