It’s definitely been some time since I last blogged, if I actually had more than seven followers I might take the time to do it more often! Though, as this blog will tell you a change in circumstances means that I will now, for the mean time at least, have more spare time on my hands.

 Not much has changed around here; dad is still recovering from his accident, and is doing it at a rate that has amazed us all. I think it’s his sheer determination that has done it - but he appears adamant not to let anything stop him, and he had made more progress than we could have ever imagined. Not only is he walking, but he’s only using one stick, he can get up and down the stairs and has managed to start driving again in an adapted automatic. I am more proud of him than I can possibly say and if sheer determination was enough, he would be up and running marathons by now.

 Mark has moved out, he did so yesterday - into a lovely little maisonette with Caroline. It’s weird not having him here - I was always aware of his presence in the house, even if he didn’t leave his man cave much... It is weird not to hear the noise of him tapping on the keyboard and late into the night, and not having to tell him to turn his TV down! I didn’t think I would ever say this - but I think I miss him already! My god I hope he doesn’t ever read this; I’ll never live it down.

University is well, over. I’ve tried for the past two years to get my degree, and to fight whatever my body throws at me to do so, but it’s not happened and I have used all my chances. I missed too much to catch up, lost out on far too much teaching time due to being ill and in hospital and sadly English literature isn’t the sort of subject where you can wing it. One of my exams involved questions on a random selection on the 20 odd books we has read in that module that semester, you can’t blag that no matter how much wishing you do. After a lot of tears and sleepless nights I finally explained it all to mum who was amazng, and as usual supportive to the point where I wondered why on earth I hadn’t spoke to her sooner. Dad was the same. Like all people, I am guilty of moaning about my parents at times - but I can honestly say that I couldn’t ask for better, and even if I could, I wouldn’t want to.

It’s scared me slightly how unreliable my body has become, and now dependant I am now on those around me. I am pretty much constantly breathless and it’s a rare day that my lung function hits above 60%, which makes it so hard to get around and get on with my life. I have become more and more reliant on the health care team at the hospital - and I am now under the allergy nurses, respiratory nurses, physiotherapists, community respiratory team, breathlessness intervention service, diabetes nurses and numerous consultants. I can’t fault them though - they are great and my GP surgery has been excellent at liaising with them all and making sure that I get the care I need, plus if I have any problems my notes scare the other doctors so much that they 'squeeze' me into see my GP who knows me very well.

In terms of treatments there’s not really much more they have to offer me at the moment. We have reached the point of giving up with the Xolair - as we are not sure that it’s having much of an effect. In a way it’s a disappointment and whilst I know that wishful thinking is not going to make it work, it was my light at the end of tunnel and it’s well and truly gone out now. My consultants have told me that my options now revolve around minimising my symptoms with regular nebulised bronchodilators and using prednisolone as maintenance at the lowest dose possible dose to control them. Then I will just have to have a low threshold for increasing it when I am unwell, with the hope of getting there quickly enough to stop the journey to admission.

Prednisolone, the fall back drug for treating asthma has some horrible side effects, and if you was to Google it I think you would be shocked at just how many there are! Steroids as most call them are something that most asthmatics have a hate love relationship with, In short bursts they are massively effective and do not cause any long term side effects. Regular prednisolone use over the years can pretty much ruin your entire body. I have osteoporosis, diabetes, retinopathy, chronic pain, muscular atrophy and adrenal insufficiency as a result of long term steroid use. Some say that it’s a fair price to pay for breathing - and they are right, I’d rather life my life with the side effects than not live at all. I know that my life isn’t going to be massively long because of them - but it’s about the quality of my years and not the quantity of them that matters the most.

Though I cannot say without any fibbing that the inpatient care I receive at Addenbrookes is faultless - but the majority is and it's is a shame that some people seam to manage to ruin all the good work that they have done in one shift! The nurses are amazing and always care for me well. My last admission I was wheeled into the resp ward at 2am and ended up with 4 nurses in my cubicle who had all come for a chat and to see how I am doing. The next morning I was insulted by the senior sister, because apparently she’s allowed to torment her frequent fliers. Then that evening the nurses doing handover were all drawing straws because no one wants to have to be scared by me and my nocturnal asthma. How rude! Loll. The majority of the doctors were great and I had a real laugh with one consultant about hammers and eggs. Don’t ask! Though I always seem to get one doctor who appears t be a complete arse, treats the computer and not the patient and also has a magic stethoscope which means he doesn’t even need to enter the room to know what they sound like....!

A&E staff are great too - they seem to like that I arrive with instructions and follow them because they are too scared to not too! This means I have always had my hydrocort, mag and amino written up and started before I leave the ward. It’s normally to a bed in RHDU, where if I am lucky the night nurse looks over at me and tells the doctor that I am always like this and that they need to stop freaking out! Otherwise I tend to get the really annoying thing where one doctor comes in, wants me in ITU, then another doesn’t, then they leave me on RHDU with close monitoring and decide to prepare in case I need some NIV . By this point I just want to tell them all to sod off and leave me alone! But once I am off RHDU and in the main bit of my lovey N3 everything is much calmer and the amazing staff has made me have some of the best out of many admissions. Thankfully I have only had two admissions in the first 6 months of this year, each one for a couple of weeks, as the care I receive at home is excellent and they really do help stop me from needing to be admitted.

I hate just how many medications that I have to take and the amount of time I have to put in to make sure that I stay well enough to be at home. Every morning I take at least 30 tablets and then insulin on top of that. I then have to do my chest physio which takes about half an hour and my nebuliser which takes about 40 minutes. I have to repeat that again at night and during the day I have more nebulisers and tablets to have. My pharmacist is faultless though - literally! He has really taken an interest in ensuring that my medication is well managed and that everything is given to me on time, even if it means extra work for him. Going to pick up my dossets is no longer something I dread as I can’t be bothered with the hassle of getting everything fixed that has been done wrong! I know that I can trust them to get it all right and greet me with a bad joke about bringing a suitcase or wheelbarrow next time.

 I’m getting better at managing myself now. I know what my limits are and when I can and can’t push them. I have figured out just how long I can carry on before I need to ask for help- and I am getting better at asking for that help and accepting it when its been offered to me. I have kind of turned keeping well into a full time occupation. It’s my job to know exactly what meds I am on, (My repeat list is seven pages) how much and why I take it. I have to keep a good track of appointments and keep everything I am given as information about myself or my condition organised do that I have s record that can move with me.it helps in clinic too - I am very on the ball!

Anyway I will go as its 3am and I am struggling to keep my eyes open! I'll update soon, promise.

Kirsty x