The 30 Day Challenge, Day 2 - Favorite Animal.

Hi World,

So before I go into the next days challenge I just thought I would give you all a short summary of the meeting I went to yesterday about age appropriate care for young adults. Basically I told them a few of the issues that both myself and a lot of other young people across the country face when regularly admitted into adult wards. I discussed the environment which we are in, and how we are often with people up to four times our age, which isn't really too nice! I also discussed the lack of emotional support, how young people can see a patient die in the bed opposite them, and then be expected to carry on like it has not happened. There was also the issue that many young people are often in education or work and worry about the effect that being ill has on their progress, so we discussed some sort of system where young adults could be supported to ensure that they were not falling behind. We discussed overall some sort of role where a person would be responsible for visiting every young adult admitted and ensuring that they were advocated for, offered support to continue their education and given opportunities to borrow age appropriate books or DVDs/DVD players so that they do not get quite so bored! Obviously we were just chatting but it sounded like something they thought was worth looking into and I am really excited about getting involved in this role.

So, day 2 is favourite animal and its safe to say that I am a batty cat lady. I love my cat Tilly and cant imagine what my days would be like without her there to keep me company. I know everyone probably says this about their animals, but Tilly's not a normal cat, she is amazing in so many ways. If I am having a bad day, she knows - she sits on the end of my bed all day keeping me company. If I am in hospital, she wanders around the house looking for me. At night time, when I go and get a drink, she follows me downstairs, then she follows me back upstairs like my little shadow. If I'm crying she always seams to know she should come and poke at me with her paw until shes distracted me from my crying.

Tilly is also the biggest wimp in the world. She is petrified of just about every other cat around and runs a mile if she sees one. We attempted to get another cat once, but Tilly spent two weeks hiding under mums bed hissing at anyone and anything which came near her, so we decided it was fairest to re-home the cat to one of our friends and let Tilly be by herself! She is in no way any sort of home security system! She runs away if anyone new enters the house and is scared of just abut every noise going. I call her bull-dog sometimes, mainly because she is the complete opposite of one!

In the past, I've been given a lot of stick for having a cat, because I am mildly allergic to them. However, when I moved out of home, my asthma didn't improve and when I moved back it didn't get any worse so its obviously not that much of an issue. There is also the emotional support that having a animal can give, look at the whole idea of pets as therapy - its been proven that animals help keep people in good spirits and cheer them up if they are not. I think that if Tilly went, I would be worse off in so many ways, because shes my therapy!

So here is a picture of my Tilly!

So that's my favourite animal, day three is favourite food, which I really need to have a think about. I might have to make something and take a picture of it for you!

Night all!
Kirsty x

The 30 day challenge - Day 1, yourself!

So the other day I saw a thing on Stumble Upon where you are given an idea for every day of the month and you have to use that as inspiration to draw a picture. I am really not a very good drawer, and so I don't think that I would be any good at taking on that challenge exactly as intended, but I am going to try and use each point to inspire some creativity! It may take more than 30 days for me to actually get through them I am not promising one a day or anything but it will be good fun and give me something to talk about other than myself!

Having said that, the first days inspiration/challenge is...

1. Yourself

It took me some time to decide what it was that I was going to do, obviously they expected people to draw themselves but we have already decided that I am a terrible drawer so that wont be happening! So I am going to write about what I would draw, in some sort of pathetically poetic way, and hope that you can use that to draw an image in your mind!

My feet, Oh the places we have been,
The paths that together we tread,
With you the wonders of the world I have seen,
Leaving memories of waterfalls and paths in my head.

My legs, I have always complained about you,
Saying you are too pale, too big or too scarred.
Yet all my years you have stayed good, trustworthy and true,
You were my support when times were hard.

My stomach, oh the beatings you have endured,
Being stuffed, or starved and hated.
Yet as time has passed and I've matured,
I have realized that perfection is a lie and overrated.

My hands have conquered many a task,
Given comfort, repaired and created.
They have always done just as I ask,
Even the tasks I have hated!

Okay I'm getting bored of this poetry malarkey now, and I need to sort out some dinner so I will leave the rest of the poem to your imagination! Tomorrows challenge is 'Favorite animal' so that could be interesting, you will all learn just how much of a batty cat lady I am.

I also have a meeting tomorrow to discuss young adult (16-25) provision at Addenbrookes hospital. Mainly looking at how young adult inpatients can be supported on wards where the majority of patients are much older. I don't know much about it all yet but I will keep you updated!

Take care,
Kirsty x

Quick post

So, after my moaning blog the other day I feel the need to inform anyone who is interested enough how things have been. 

I went to my GP on Wednesday, and thankfully he was very understanding and lovely about everything. He increased one of my medications slightly so that my pain would be better controlled. Im not feeling any difference at the moment though, I'll give it till Monday and if I'm no better by then ill try and get in contact with my GP again.

I'm really struggling at the moment and as much as I don't want to admit it, I feel an admission looming. Although an admission would almost be a welcome break, it could  give me the chance to have treatments so that breathing isn't such hard work! It would also be a chance to get some more input regarding my pain control and general care. But as long as I can  continue to fight at home I will, fingers crossed I get over the blip without needing to go in!

So yeah that's all really, not much has happened recently!  

Love to you all, Kirsty x

A moaning blog. Be warned.

So clinic today was hard, which for some reason seams to be the norm at the moment. Sadly my inflammation levels which they like to be between 15-20 are now 33 and my lung function is now around the 60% mark, which considering I am still on high dose steroids from my chest infection a few weeks ago, is not good. As I taper the dose down, which I will do, my inflammation levels will go up and lung function will drop. In other words, I will end up wheezy and on very regular nebuiliser's - hopefully I will avoid admission but its not looking promising as my baseline is low now, before I even start reducing.

I don't think I am getting on too well with my consultant, he spends every appointment outlining just how much damage steroids are doing, and will continue to do to my body. This would be a sensible thing to say to someone who he thinks will eventually come off steroids if they manage their condition well, but hes already said that my lungs would not be able to cope off of them and so he cant see that happening. So saying 'You need to be on this so that you can breathe, but it will wreck your body so you have no choice but to be' isn't helping!

I am also really struggling with pain management. I live with some level of pain at all times, and then when I change my steroid dose even slightly it becomes too much. I need to be doing something along the lines of exercises to help prevent mu muscles from atrophying further, but there is only so much that I can work through and at the moment my pain levels are just too high. But when I mentioned this to my consultant he wasn't particularly helpful. Well, he was more unhelpful than anything.

I have an appointment booked with my GP tomorrow who is excellent - I trust him completely. I am going to ask for some physiotherapy in order to give me some indication as to what sort of things will build up my muscles without killing my lungs! I am also going to tell him that something needs to be done with regards to pain management, and if he cant help then I need to see someone who can. If we cant make it so that I am stable off of steroids then we will just have to manage the effect that they are having on my body now and give me back some quality of life.

If that doesn't work next time I am admitted I will make a point of telling them that I have needs which will need to be assessed before I go home. That way the hospital consultants can have me seen by the pain nurses who will then follow me up, the vascular team (for my port) and hopefully put in a referral for some physio. I am also going to, depending on what doctor I see and how I feel about them, ask to see them as an outpatient, just once, and see if a fresh set of eyes will help!

I am struggling with the way they cant 'fix' me. I like to fix things, I find a problem and I like to do whatever it takes to fix that problem. But I there is no cure for this, it doesn't exist and I am scared.

I am sorry this was such a depressing blog. I don't like to make posts which are full of me moaning about my condition, but this seams to have turned into it.

One lovely afternoon!

So, today has been lovely and I think I've done more today than I have all week! I went to see my Auntie Debbie this afternoon, her garden is beautiful. I've not seen it looking so lovely - all the plants are out and everything just looks really pretty! I wanted to get a photo of the length of it but the sun was really bright and it just wasn't happening - so I got this one of her climbing rose tree. It's beautiful.

Then I went to see my brother and his sister at their flat - it feels weird to say it because though the have been gone over a month now it is all very new still... They are so happy though and have made it so homely it's great to see them so settled! Then I went home and sorted myself out a bit to go over my friend Stacey's for dinner, we had what was my first BBQ of the year! It was lovely to sit in the garden and relax, I had a lovely time and the food was very yummy!

I'm now home and laying on my bed watching The Kings Speech - one of my favorite films I must say... its a great mix of interesting and funny, which is always a good combination :) I'm absolutely bloody knackered after my busy afternoon though and so a good film and a bit of a blog session is just what was needed. I'm on a reducing course of steroids at the moment, trying to get down to my maintenance dose again, which I haven't been on for a good few months. It is slow going and alongside the issues it causes with my bagpipes I have been in a lot of pain, and my muscles have been weaker than usual meaning I am struggling to do much. I get worn out really quickly and can't seam to get comfortable whatever position i'm in, making it hard to get a decent nights sleep!

Oh, and my friend Ellie met Jeremy Kyle at the Newmarket races. I am well jealous! Sad I know!

Anyway, time to say goodnight and finish watching the film! So, night - blog again soon -

Kirsty xx

Quick update!

I hate to say it, but I want it to rain. I want the sun to go away and for it to rain enough to cool England down and stop it being so muggy! Apparently me and the heat are not best suited and I just have a great temptation to scream 'I'm meltingggg, I'm meltingggg' over and over again! I am surprised that my fan is still going strong and hasn't over heated either - its been on pretty much constantly since Friday and I'm not planning on turning it off any time soon.

Whining aside it has been lovely to have a bit of sunshine, and to enjoy it with family and friends - if it was horrible and wet we wouldn't want to go out! Ive had a busy weekend actually and now all I want to do is sleep for a few weeks! Saturday was dads birthday and he had a Hawaiian party at his step daughters house, then the next day (so today) we all went over to Marks and had a Chinese - dad was hungover though so I don't think he enjoyed it quite as much as he could have!

This coming week isn't exactly full of plans, which is definitely conductive to my wish to sleep for as much of it as possible! I think I am going to need it as well, I'm struggling to sit upright to type this, my lungs are moaning and my legs just don't seam to want to work anymore! I'm actually struggling with my BM control in this heat too, as I get all hot and my sugars drop, but then I dont realize they have dropped and end up having a manky hypo, another reason to stay in bed!

On the plus side, this is going to be the last week of extra antibugs and I will be back on my usual prophylactic antibiotics after that. Go me!!!!

Why asthma needs a cure.

I was looking through some photos today and was reminded just how important the work of Asthma UK is. 

The first picture is of me before 4 years of steroids, the second picture is me afterwards. Steroids are a last resort drug and wreck your body, keeping you alive but causing even more problems in the long run.

Asthma needs a cure...

I may not have a degree, but I will remain positive, because life is too beautiful to be disappointed.

I've actually had more page views in the past week than I've had so far this year, which is crazy because all I've been doing is rambling about completely pointless rubbish! Though of course that doesn't actually take note of the number of people who are really reading it - just the ones who stumble across the page...! It does spur me on to write more often and to try and think of something interesting to say though. I am yet to decide if we bloggers are intellectually amazing, due to the fact that we have more to say than a Tweet or Facebook status can hold. Or, if we are in fact intellectual loners, who have so much to say and no one to listen so we type it out and publish it in a tiny corner of cyberspace! What do you guys think?

It’s a funny time of year at the moment, particularly this year as now is the time that the majority of my schoolmates who went off to university are graduating. I can’t help but feel disappointed that I am not graduating too - it highlights just how different my life is to what I had planned, and how my life differs from those peoples that I grew up with. I am trying to think of it in a positive way though, I have still learnt a lot in three years - even if I haven’t finished them with a degree...

If I was a 'normal' student, fresh out of uni I wouldn’t appreciate the fragility of life, the beauty in every second of every day and the need to live every minute like it could be my last. I don’t think I would laugh so much, because I would assume that I would have forever to laugh in. I wouldn’t love as deeply as I would be forever waiting for whatever was around the corner, expecting tomorrow and not living for today. I don’t think that I would truly appreciate every breath, the taste of clean fresh air in my mouth, oxygen running through my body - because I would take each breath for granted, believing that the next one will come just as easily.

I may not have a degree, but I will remain positive, because life is too beautiful to be disappointed.

Hey All,

I don't really have masses to report at the moment, as my days are not particularly filled to the brim with excitement! I have taken to spending a lot of time on craft projects and I am currently working on a scrapbook with holiday pictures in it for a friend, its taking a lot of time to do so its keeping me occupied! I have also taken up knitting, again. Funnily enough I am not massively inept at it, and despite the first few rows looking like Swiss cheese (full of holes) it is now looking much better and is starting to take shape. I will be sure to post a  few pictures of both projects once they are done so that anyone who wants a good laugh at it can...! 

Sadly, the vast quantities of time that I seam to be spending alone, with my cat, are turning me into even more of a batty cat lady and I have even downloaded an app on my iPad for my cat. Its hilarious, she plays it properly for a while and then just starts head butting the screen. As you can see on the picture below she does become rather engrossed in it. Strange animal!

Roll on September when my modules start and I can get going with that - hopefully it will divert my attention from knitting and iPad games for cats, making me feel somewhat less of a recluse! I have decide to start preparing for it soon though, which will mean that I have something else to focus on and make life easier for the start of the course. I realised just how terrible I have become at GCSE standard maths and that's the sort of level you need to be at to get the most out of my next module - so I brought some books and practise papers and I am going to get my maths somewhat up to scratch. How on earth I will manage that I don't know, because despite getting an A or B (My memory isn't that great) at maths I don't think I have any recollection of anything I had to learn! I am also going to be doing some work on AS/A2 human biology and anatomy and physiology. Hopefully that shouldn't be too much of a shock to the system as it wasn't that long ago I studied that and I have had to keep my knowledge up to some degree since then!

Unfortunately my health hasn't been too great as I have had a nasty virus and chest infection so my asthma has been pretty bad. Sadly I had to go into hospital on Sunday, via A&E and ended up on the RCU on N3 which is the equivalent of a respiratory high dependency unit and needed quite a bit of treatment. For those of you who know what it means, my chest was nearing on silent when I arrived, my 02 levels were decreased and my C02 levels increased, which isn't good at all. The doctors were great though and after some nebs, IV magnesium, hydrocortisone and aminophylline I was doing much better and my gasses had levelled out on 4L so I was put on RCU and given IV antibiotics (bug juice). This makes it sound like it was going swimmingly, which it was until the following morning!

I woke up at about 8am and was feeling really, really tearful - so much so that I couldn't speak to anyone without crying and ended up begging my mum to come in and see me. Well, by the time she had arrived I was sobbing constantly, I couldn't speak, couldn't stop crying and all I wanted to do was hug my mum and go home. All the nurses were really confused, as was I, about why on earth I was so upset - they all know me so well and all of the them were saying about how they had never, ever seen me like that before. things continued like that for the rest of the day, getting worse if anything, and by evening visiting I was in such a state that I wouldn't  let my mum go - and ended up self discharging. 

Removing your 02, telling them to stop your aminophylline infusion and leaving against medical advice isn't really the best thing to do. I regret it now, especially as it was a very silly and dangerous move to make - as I was still on IV anti bugs and the consultant who came around pretty much said that if I left i would be back in ICU within the day! Thankfully I proved her wrong, and once home went on a stonking dose of steroids, cocktail of bug juice and very regular nebs... so far I am just about coping so lets just hope that I carry on that way! I have also been doing a lot of chest physio in the hope that I can help shift as much gunk as possible and stop the infection from having a chance to take hold again! 

Since leaving hospital it has been discovered that the IV antibiotics they had me on were a type that I have never had before, and that a possible side effect of them, even though it is rare, are behavioural changes and emotional disturbances. Which explains why I was feeling so distressed, so it has been added to my notes that I should never be prescribed them again. I am rather annoyed that my inpatient team didn't realise that was what was going on, when my regular nurses figured it out straight away when I called them... if they had of it would have saved me a heck of a lot of upset!

Anyway - I am going to go now. I need to go find my cat who is hiding in the garden, and get some sleep!

Nighty -

Kirsty xx

Hey all,

It's been a while since I posted, but I've been taking some time to update my blog a bit, and make it a bit more informative! Its taking some time though and it is still work in progress - but we are getting there. 

There's internal links along the top now which, sadly took me ages to figure out how to place! I hope that they will turn into a bit of a information space as I answered some FAQs I get about asthma, and will have another soon with some links to places that might help if you need someone to talk to about  or just need some advice .

There's also some bits about me. I took part in the '30 questions about living with my illness...' quiz as part of invisible illness week,  and I have put up the answers. But I will add any others so people ask if you have something you think I should answer! There's also apiece  about what all this has taught me about life and living and some pictures of my journey!

I have put some links on my page to a few causes which are close to my heart. The first is Asthma UK, who I often refer to as AUK. They have played a huge part in my life and made it so that everything doesn't feel quite so scary. I've met two great people through AUK, at a weekend away in Manchester, both of them have provided me with loads of support and many giggles. The guys in the Wilson St office in London are the best and I couldn't fault them in any way, they don't just do their job, they really put everything into it and that makes AUK such an exciting charity to work with. 

The second is 'Live Life then Give Life' also known by a shortened version LLTGL! LLTGL is a charity which promotes the NHS organ donation register and encourages people to join it. One of my friends, the one in the picture actually, is suffering from end stage CF and desperately needs a lung transplant. She's fighting, they didn't expect her to see Christmas, then it January, March -until  its July and she's still here fighting this thing day in day out. She deserves this second chance, and she can only get that if people sign up. 

A very close friend of mine Janine, is one of the most genuine and strong people that I know. Thanks to the care she receives at Addenbrookes and Papworth she is still here and still going - and together ACT and LLTGL support the care she gets.

ACT means a lot to myself as they fundraise for Addenbrookes hospital - the hospital in change of all my care. ACT makes it so that patients are well looked after in every way, enabling the medical staff to get on with delivering the medical care that is going to save lives. I don't knew what I'd do if ACT had not funded things such as the library! Die of boredom?! ACT also links into the Addenbrookes website. The doctors at AUH are great. From the minute I walk into a&e I am cared for in the best way possible and they always aim to do what is best for me - even if it means going against the grain. The ward staff on N3 are easily the greatest bunch of people I could hope to be cared for by! Always a smile and a gossip! I don't even think works could describe how great my specialist nurses and doctors are either - it would not do them justice! 

I am aware that the above do scripts do not do the three of them any justice - and I am planning on making sure that they get a proper mention and a clear link to their site as I think it so important they get the recognition and support they deserve. 

I didn't realise tags this update would be quite so lengthy before I even get around to telling you about everything else thats happened, that's okay though - It gives me something to talk about tomorrow :) 

So, till tomorrow!

Kirsty.  Xxx