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!! 😂 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”! 😪 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…I swear!!!!
But as you all know…I’m not me if I’m not up and about!!