Sad news, a quick update.

Hey all,

A fair few things have happened, one of which is something that I can't believe I am having to tell you. 

A girl I know, a friend, who also suffered from very severe asthma, has passed away having had an attack. She really was a lovely person and I wish I had taken the time to know her better. She was really helpful when I needed advice regarding treatment options and she really took the time to chat and share her experiences. I'm not going to sit here and pretend that I was her best friend and knew everything about her, because I didn't, but the death of anyone from an illness which is close to home is always hard. 

What I do know is that she was as kind and caring towards others after her death as she was during her life, donating her organs and saving the lives of so many people. The world is truly poorer for the loss of her and I am deeply saddened by her death. My love, prayers and thoughts go out to her friends and family as they come to terms with their loss and their futures without her. But I hope they find some comfort in the fact that her death, however tragic, brought life to so many others.

Sleep well Dawn, fly high and breathe easily, knowing that you are a beautiful person inside and out. Thank you for allowing me to have the pleasure of knowing you.

I can't think of anything else to say now. Everything just seems to pale in comparison, and anything I have to say feels tiny. So I am going to sign off here, and update again when my news, and what's been going on in my life, feels like it's regained some significance.

All my love,

Kirsty xx

Guide camp, Moot V

Hey All,

I survived camp!! Last Thursday I went off to guide camp with a group of 6 girls and two other leaders. It was the first time I had planned a camping trip and actually been made responsible for a group of girls - so I was a bit worried that I would end up killing one of them! Thankfully it went really well, I didn't kill anyone and and they all enjoyed themselves.

The camp was a joint scout and guide camp called MOOT - which is ran every four years, there have been five of them in total, and I have been to four of them. It's one of the big camps in my diary and I can see myself looking forwards to taking another group of girls away to the next one. 

My guides were so, so well behaved and I was so proud of them all. Everyone of them came out of themselves, tried something new or learnt something at some point. The best bit had to be seeing the quietest girl becoming more confident and chatting away to me. I was also so proud of how one of the young girls, who is diabetic, began to look after herself. At the start of the weekend I was having to remind her to test her sugars at appropriate times, by the end of the weekend she was doing it all herself. It got to the point where all I had to do was ask for 'a number' and she gave me a reading! 

So yes, all in all - I am one happy, happy leader! 

I was also rather worried about how my health would fair during the weekend, as historically me and camping don't always go too well. However, I made a point of increasing my medications for the weekend, in the hope of stopping a problem before it started and it did work. Thankfully it stopped me going epically splat! I did have a couple of days of shocking lung function and low oxygen levels, but it wasn't so much so that I couldn't cope and it was most certainly due to the increase in meds that I did. Though I did get bitten to death.

I have been rather busy sorting out paper work, catching up on sleep and getting ready for the crash which comes from having to drop my meds back down - but it will all have been worth it! 

Before I went away I eventually got around to taking my iLiveiGive t-shirt photo, and my organ donor card one. They are rather silly, but here they are :) 

I also have an appointment tomorrow with the breathlessness people, it's either going to be a complete waste of bus fair or worth every minute. Who knows eh? 

Anyway, I'm gonna go now. I am knackered, need to sleep and must put some bite cream on before I scratch my legs to shreds. So, so, so itchy! 

Much love,

Kirsty x

A not-so-quick update!

Hey all,

Sorry it's been a while since my last post, It's been a funny sort of month and I completely forgot to update.

So, it was my mums birthday on Monday and as far as I'm aware she had a lovely day! I did a little birthday lunch for her, so we had sandwiches and birthday cake whilst she opened her prezzies. She had lots of cards from people and tonnes of flowers! I got her chocolate, flowers, wine and a watch for work. I also payed for her to go to London with a friend for three nights, in a very nice hotel, she is there at the moment (Saturday) but she is due home tomorrow. From what it sounds like she has had a lovely time, and really enjoyed herself, so I am very pleased! 

I've had a busy week so far and full of what felt like very long and busy days, so I am knackered. I'm trying my hardest to stay awake and type this - but I can feel my eyes dropping!

Monday was Diabetes clinic, (I have iatrogenic diabetes) but there isn't anything much to report. My HbA1c was only 5.9% which is excellent - it means that I am very good at controlling my blood sugars and adjusting my insulin doses. Get in there! I have been wondering about switching from multiple daily injections of insulin to pump therapy, which would save me having to inject 5 times a day - or more. Unfortunately because I'm not a type 1 the NICE guidelines don't cover me, and because my control is so good they cant make an exception and approve me for one. Its a bugger, but I just cant afford the cost of doing it all privatly so I will have to just get on with what I have been doing. I am going to be put on a course called DAFNE which stands for 'Dose adjustment for normal eating' and is designed to give me a more structured way of managing my diabetes - its either going to be really interesting or really boring! I am a tad worried because it is going to be a week long course and I don't know if I will have the energy to cope with that five days in a row. But fingers crossed it will be okay.

Wednesday was Asthma Clinic, which was eventful as always! I arrived on time and ready to get going - but having walked past smokers corner, and then being subjected to lung function I was a bit worse for wear. I ended up rather wheezy and managed to need more than couple of neb's before I didn't sound like a set of out of tune bagpipes! After all of that my lung function was up slightly at around 50/60% so I was very happy with those numbers, and my inflammation levels are down slightly! Unfortunately they are still not 100% sure if the Xolair is working properly, so I have been booked in for a review and they are going to decide if it is worth continuing, or if it would be good to have a trial period off of it. I don't know how I feel about that. I don't want to be on a drug that isn't working - there is no point in pumping myself full of more drugs if they are not helping. But at the same time I am worried that if I come off of it and it has been working on some level then I will take a massive step back. I dont want to end up in hospital every month or so like before. But who knows? I will just have to take it as it comes and see what happens. It just feels weird that if we stop this, there's not anything else that Addenbrookes can do for me, it was their last attempt to help me.

After my appointment I went to visit one of my friends who is on N3 at the moment - she is really struggling with her bagpipes. It was great to see her, we had a good natter, and a giggle which I hope cheered her up. In true Kirsty style I took her a balloon, card, chocolate and a little personalized plaque which had been made and sold in the concourse - it was great to see her smile at her little gifts. I am hoping that she will be home soon and back with her family and pooch, but if shes still there next Monday/Tuesday and wants a visit then I will definitely pop in and see her again - maybe cupcakes will be the gift of choice next time?!

Thursday was a nice long day in bed! Lazy I know but I was very worn out after the start of the week so I needed to chill... In the afternoon I went and picked up my niece Aj from her house and she stayed the night at mine, we watched a film and just generally chilled out. It was lovely. The next day we went to Cambridge on the bus, bimbled around the shops, had lunch, and went to the build a bear workshop. We both made a bear together and had a great time doing it. We went all out - choosing the smells to go in them, fluffing them up and dressing them, naming them and paying. Aj was wearing her converse which she had decorated herself, all the staff loved them and were very jealous of her! On the way home we took some silly pictures on the bus with our bears... Alieshas bear was all pink and fluffy with hearts on its ears, a Rapunzel dress and pink sun glasses. Mine was an asthma friendly, short fur teddy in traditional blue PJ's and old fashioned glasses!

Then we went home, had some dinner and made a start on her 'Holiday Scrapbook' which she has to do for school as homework. She made a really good job of it and we both spent hours cutting bits out and putting it all together. When we woke up this morning we carried on doing it and managed to get lots of pages finished. Her mum loved it, and apparently there is a prize for the best book. If she doesn't win I will be outraged!

So now its Saturday night and after taking Aj home I spent most of the afternoon doing bugger all. I needed it though after my busy week! I even put a few loads of washing on and dried it all, so that when my mum comes home tomorrow she is not greeted by loads of dirty laundry. I am really looking forwards to seeing her - I cant wait to have a big hug and hear all about what she has been up too :)

Anyway - its time to say goodnight, I need to wind down now and get some sleep, otherwise it will hit 4am and I will still be wide awake and massively overtired!

Till next time,
Kirsty.

PS. I haven't forgotten about the 30 day challenge. I just need to make something to post about... maybe the whole cupcake gift thing will kill two birds with one stone?!

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...