I would get up, look after Isabella all day, eat, go to bed. That was my life before Julia’s House. Every day was the same. I couldn’t meet my friends, I couldn’t go anywhere.
Isabella has chronic lung disease and has to be on oxygen. She has tubes into her nose and these are attached to an oxygen canister – she struggles to breathe without it.
The oxygen canisters are so heavy I can only take a small one when we go anywhere. I can’t drive and can’t travel far on foot in case the oxygen runs out before we can get home.
Bella was born when I was 22 and since then there has just been the two of us. The days used to just go on and on, just me and her all day and then in the evening listening out for the SATs machine. She is wired up to it while she is asleep and it will bleep if not enough oxygen is getting through. It’s scary when that happens.
The winters are the worst because we pretty much stay indoors and don’t go out at all as we need to avoid all the bugs that are around to avoid Isabelle getting a chest infection. A cold could be devastating to her because her lungs are so poor.
From the minute she was born she was underweight and struggled to feed. She used to go blue and start to cry. Then when she was two-and-a-half months old she stopped drinking and lost a huge amount of weight – she was just skin and bone.
The doctors and health visitors were worried but no-one could work out what was wrong and I felt really frustrated because nothing was being done, first the doctors thought it was reflux and then they thought she might have a chest infection. She looked awful, she was so thin.
A week later she suddenly turned blue and stopped breathing for a few seconds. I felt really, really panicky. She ended up in hospital and was there for months having all sorts of tests. Eventually they put a camera into her lungs and that’s when they discovered things weren’t right, she had chronic lung disease.
I was working shifts in a shop at Bulford Army Camp and had to leave Isabella every other weekend and go home. The hospital would FaceTime me so that I could see Bella and talk to her, it was so hard to leave her. In the end I had to give up my job.
Two nurses from Julia’s House came to the hospital to see me – Neil and Lisa – and told me they could help. They were there when we came out of hospital too and carried on visiting us at home. It was really nice to have the same team, to have that continuity for Isabella.
The nurses and carers do all sorts of lovely things with her – like baking and soft play. She may have lung disease but I still want her to go out and have fun. It’s good for Bella to be sociable and spend time with other people.
I love that the carers completely zone in to what Isabella wants to do – they are so chilled about everything. To start with I was anxious about leaving her with them and going off for a break. I was so used to being with Isabella around the clock it was hard to walk away.
I love how flexible the service is – I can ask the nurse for whatever times suit me. At the moment I have three hours a week and also have some evening sessions so that I can go and meet my friends.
I am having driving lessons while Isabella has care. I am finally going to be independent, able to go out, to travel further without fretting about oxygen running out. I can’t wait to be able to take Isabella out.
She is such a pretty little girl but she would be so much prettier without the tubes. It breaks my heart to see her like that. People stare at her in the street – I really hate that. People come up to me and ask what is wrong with her – it is so rude, I would never do that.
I can get very angry about being stopped. People don’t realise that I may only have half a tank of oxygen left and cannot dawdle. Because I have to walk everywhere I have to work out how long I have before Isabelle’s oxygen runs out. Walking to Tesco and back can use up half the oxygen before I have even started shopping.
Even with the bigger canister of oxygen I have at home I can sometimes be waiting for a delivery and have to manage on the few hours’ worth left in the tank. If the oxygen is running out I have to stay calm because if I panic, she starts panicking and that just makes her breathing worse.
Isabella uses a lot of energy just breathing and can get tired very quickly. Sometimes I end up carrying her on my shoulders with the oxygen and SATS machine – that measures the oxygen levels in her body – in a backpack.
My back and neck get really bad but now I have complementary therapy from Julia’s House which is fantastic. The massages are really benefitting my aching back and it is also a chance for some me time.
My world had become so small before Julia’s House. I used to see my friends and go out all the time, have fun but then I found myself at home on my own with Isabelle , never going out. I sometimes feel like I am talking to myself all the time.
Julia’s House has opened up my life and given me the chance to go off and have driving lessons, to meet my girlfriends now and again, just normal everyday things. I know I am always coming back to look after Isabelle, but now it feels like there is someone there looking out for me.
When I first heard about Julia’s House I didn’t want it, I didn’t want anyone else in my life. I thought I could just deal with everything myself, but life is so much better with when you have that support and know you’re not on your own.