Catch up, part one.... (Ikea, caffeine and power tools.)

So since the last post I have had a couple of really great days out, and a fair few days recovering in bed! It's been lovely to spend find some time with my friends; even if it does take a lot out of me, the main thing is that I enjoy it. I just think that it is better to have 3 really great days, followed by a few days of increased discomfort/illness - than 6 days of feeling bored, uncomfortable and ill! 

I had a great trip to Ikea and the range with my friend Ellie, who is also a crafty person! We managed to get quite a few things that we wanted and many things that we had no idea we wanted, and needed to complete our lives! It was a long day though, and so Ellie pushed me around Ikea in a chair so that I didn't have to walk... 

As you can see, I had some sexy wheels for the day! Ellie seamed to spend vast quantities of the day telling me off for trying to wheel myself around though. I thought I could give it a go - but the myopathy seams to be
killing my once bulging biceps (... okay maybe not bulging) and it made it look like Ellie had been torturing me all day and leaving me to fend for myself ! Which she had secretly, cause shes really mean! We also went and had a little look around Costco, in the hope that we would find some bargains (I wanted a giant tub of flying saucers!) but to no avail. We left empty handed, and with our dreams of it being an Aladdin's cave full of yummy treats dashed. Or sorrow didn't last long though, and we managed to pull ourselves out of our deep hole of disappointment to go and buy unnecessary, yet much coveted, craft supplies. Muhahahahaa!

We then finished the day with Starbucks and an all you can eat Chinese buffet! I'm not normally a hot drinks person, but I was cold and in need of caffeine so I had a yummy latte. I was also impressed that not only did the lady in Starbucks write my name without asking, she even spelt it correctly! By the time we had finished it was easily 8pm and I was starving, generally I don't view all you can eat buffets as a challenge, however what with me being so hungry it probably looked like that to anyone around. It was a most welcome end to a lovely day.

Then, later that week I went to see my dad, and we somehow managed to build a kitchen. Well, not the whole kitchen - that would be beyond impressive, but we moved doors around and put them on cupboards etc. Dad even let me loose with power tools, and no, I didn't break anything (or anyone)! It just goes to show that you can do anything you want if you put your mind to it, and it also shows that even with only one working hand, my dad can do a better job than most can with two. Makes me very proud to be able to call him my dad.

Also, my dolls house is coming along nicely. Its all painted and has its windows fitted... My skills know no boundaries. I can fit kitchens, windows and even build houses. I also have a newly assembled 'tool kit' which contains a fair few items which I think make me significantly more dangerous than I previously was... Such as a hacksaw and various types of craft knives!

My friend Stacey also successfully beat off numerous other candidates to get a job working in a local primary school. Obviously I am very, very proud of her and think that she will do a great job - so I treated her to some of my famous home cooking, fake champers and some prezzies! Well done Gavy,  go get 'em!


















Anyways, this is the end of part one! Only because I'm too lazy to finish writing the rest ;)

Take care,
Kirsty x

Sooo... Since my last post very little of any interest has happened! I'm home and trying to get back to some sort of routine, but it's taking time and effort to get there! 

I've recently managed to buy a Cuttlebug second hand, off a friend of a friend and I'm enjoying it far too much!! It's really hard work to turn the handle, cause I'm all pewney and weak! But look! Cuttlebug! 

I gave an interview for Allergy UK, where I spoke about the effects of indoor allergens on my asthma the other week. Was rather nervous - but it went well, and the resulting podcast seams to have got some good comments. It's also gone onto YouTube! Here's the link if you want to check it out...

http://bit.ly/1hzpeAy

Don't forget to comment and let Allergy UK know that it's actually been worth the effort!

There's been some sad news too, my best friends bunny, Jasper died. It was very quick, he picked up an infection which caused septicemia , and died later that day. Poor Jasper. He was a lovely bunny and we will miss him lots. 

I have been working on my dolls house a lot, and it's looking really good. The windows are all in, the roof tiles are on and painted and I just need to do the chimney and the outside will be finished. I'm very pleased with it so far - I can't wait to start sorting the inside, it won't be long till I'm ready to do that :) 

I've also managed to discover that I can watch season 9 of Greys Anatomy on love film! It's very sad how exctited it made me, but I actually watched the whole thing in a couple of days. Oh, and now I can't cope with the whole waiting for season 10 thing. It's driving me nuts. But, season 9 was amazing, and there were many moments which made me go 'Ahh', 'Eeeeeeep!' and 'Awhhh' - there were times which led to this being posted on my timeline...

Yes... I'm that sad.

Tuesday was clinic. It was a monumentally frustrating as normal and as usual, I left wanting to either kill myself, or someone else... I'm not sure which option, but I was close to carrying one of them out! My consultant has seemed to have forgotten about just about everything we had discussed before... He wasn't supposed to be messing around with things, but leaving them as they were until Heartlands see me and letting them decide what to do! But then considering he doesn't even seam able to read the BASIC things about me... Like the fact that I'm diabetic and that he's failed numerous times to get me off steroids, and it's not worked... I cant expect too much.

On the positive side, my lung function was around 65%, which is about 10% better than last time, and my ENO was better too. My GP is also sorting out my pain management, which has been great, it's meant that I can actually get comfy at night and get some sleep. 

I don't think there's much more to say! I'll update soon when I actually have something exciting to add.

Take care,

Kirsty x

  

So, I've been home about a week since my last admission. Unfortunately the second half of the admission was just as much of a shambles as the first! They carried on making silly mistakes regarding my care, some of which were boardering on dangerous! Still managed to pull some silly faces though!! 

Rocking the 'sticking my tounge out' pose! 

So after the night of the aminophyline drama, we gradually reduced it and took me off of it. Unfortunately that night it all went boobies up, and I splatted spectacularly! Around 10pm they had to call the on call reg, cause my sats were around 85% on 8L and I sounded like a pair of out of tune bagpipes. He came along and gave me more magnesium, hydrocortisone and aminophyline - and stabbed me for numerous ABGs until he gave up and admitted that he wouldn't be able to get one!! Then along came the critical care team who wasn't impressed by the lack of ABG and wanted to try. Thankfully he told them that he wasnt going to keep stabbing me. 

Things went okay after that. I got better and was so excited when I managed to get my O2 down to a blue valve! Annoyingly they were very rushed and did their best to discharge me ASAP. To the point where I had only been off 02 for an hour or so, and off of amino for about 12 hours. Not that I'm complaining about getting out quickly - but some discharge planning wouldn't have gone a miss, because they managed to discharge me with the wrong medication etc.

In other news, my course is going well, and I've managed to get between 80 and 90% in my past two assessments! Which makes me feel better about it all - at least it's not all going right over my head! Rather worried about some of the other assessments, but I will just cross that bridge when I come to it and hope for the best. 

I've also started a dolls house! Stacey got me one for my birthday and I've been working on it - it's all put together and the decorating of the outside is next on the cards :) Tilly seams to like it too and has taken residence in the living room...

 

Bless her! She does look very cute in there though, and it's turned into her hidey-hole for when fireworks go off...!

Me and Stacey had an evening at the cinema the other day, watching Bad Grandpa. Was the funniest film I've seen in ages - and the night ended in nandos and the purchasing of a Eeyore onesie, a good night over all! 

Oh and Emma sent me some pretty amazing socks! I love them :) They are also really comfy too, all soft and cosy. We keep an exchange of letters/prezzies and postcards going between us, so it won't be long until I send Emma's - just got to finish it off - I wont say what's in it incase she reads this and it spoils the surprise! 

I'm gonna go now, starting to nodd off and I really need to sleep! Take care -

Kirsty. 

So it's day three of a very frustrating admission - and I am beginning to realise how much I miss being cared for by the inpatient team that know me really well! Yesterday the doctor who came around at ward round didn't listen to me when I warned them just how quickly I deteriorate at night. She also stopped my 02, without checking my sats. Funnily enough they dropped right out and I had to go back on oxygen! So when my heart rate was rather high and they decided to stop the aminophyline to let it settle they didn't listen to me then either!

Then surprise surprise I did! So at 9pm when my sats had dropped to the 80's despite me being on oxygen they restarted it again. A rather unneccecary set back really! 

So ward round this morning the doctor actually listened to what I had to say, agreed that as I was wheezy now, and it's day time we should increase the aminophyline rate so that I don't splat in the evening. Finally someone with some sense! She also decided that we should treat the pseudomona infection with oral Cipro and nebulised Tobramycin... So off she went to check that they had some in stock. But then she came back and informed me that the doctor who didn't listen to me yesterday (and hasn't been to see me today) has decided against it and wants to treat it with oral meds. 

Basically, to put it bluntly, this doctor is a complete and utter ?@!*+$ who doesn't seem to remember that it's my body, my condition and that I am the one who has the right to call the shots here! 

Okay. Rant over. 

Health related update!!

So, last Monday I woke up with a really bad tooth ache, and after a day of trying to get an appointment, I finally got one in Newmarket. It turns out that one of my teeth has gone all crumbly and I have an abscess. If I didn't now know other wise I wouldn't believe that a tooth could hurt so much! So the dentist, confused by my prophylactic antibiotics (Clarithromycin) and scared of contraindications between all of my other medications, prescribed me a few days of Amoxicillin, admitting that he wasn't sure they would clear it... helpful! So the day before my birthday (boo) I had to ring my GP, still in pain, and ask for something better. Que the third antibiotic in the drug roulette, Metronidazole. Meaning that I couldn't drink on my birthday :( Gutted!

Anyway my tooth is feeling better, but I now have to deal with getting it taken out next week, and I am so not looking forwards to that experience. I have explained to the dentist about all of my health issues and he is going to do his best to get it over quickly, so that i am not laying down for too long. Hes worried that it may splinter as the tooth is obviously very weak, which I don't want, as that would mean it would take longer to pull all of the bits out!

On top of all of that I've had a cold and sore throat, which has made my chest feel rather manky and generally not very happy. Typical really isn't it - if it doesn't rain, it pours! Thankfully I have managed to keep my chest at bay by upping the prednisolone and nebs and also starting antibiotics as soon as possible (Que number four, Doxycycline) which helped. Get me, being all proactive!

so today was clinic day, and I had to get up and be in Cambridge by 10am, which killed me! I've still been feeling pretty rough, so it was the most activity I've done in a good week or so, shock to the system! I was a bit worried about what they would say, because i knew my lung function would be down and i was pretty wheezy by the time i got there. as i suspected my lung function was down to 53%/55% which is pretty rubbish, my inflammation levels were up and my chest was wheezy and a bit crackly. somehow i managed to escape with antibiotic number 5, Ciprofloxacin, and instructions to admit defeat if i get worse. Yay!

I also had my Xoliar, so I am full of anti allergy goodness!

My consultant also said that he has spoken to Birmingham Heartlands, and the lead consultant has agreed to see me. Addenbrookes received a letter from him on the 2nd October saying that he would send me an appointment and asked for some more information (test results etc) so at least I know things are moving along and it shouldn't be too long until I hear from them. Fingers crossed they can do something to help!

So that's it at the moment! I cant think of much else to say.

Ohh actually! My new BM kit comes with PRETTY COLORED LANCETS! I am currently using the purple ones. Last week was blue :)

That really is everything... time to go chill because my arms are sore and I need a neb and a nap. Ohh and maybe some chocolate?!

Take care -
Kirsty.

So last Saturday was my Birthday! I was 22... Isn't it weird how time flies? one month merges into the next. the months then merge into years. Before you know it decades, have been and gone before you even got their name and number. But before I start on some long ramble about time I will let you know what happened on my birthday! 

As I was awake at midnight I opened my first present! It was from Emma and contained much evidence that she knows me too well! Suffice to say that after opening them, I right away had to use my new promarkers so I couldn't go to bed ;) here's a picture! 

Then me and my friend Stacey went to Scribbles Pottery painting studio in Newmarket. I painted a plant pot, and she painted a bunny!

Me posing with my unpainted pot!

My finished pot... Which looks like a child had painted it. Oops.

This is Stacey and her Bunny bunny bunny! 

After that we went off to spoons for some lunch (we were starvinggggg!). By then it was easily 4pm and my Ellie came to see me and brought me some lovely presents and had some cake with me and mum. 

By that point I was half asleep and really needed a nap. I was so tired that I could barely sit up and ended up asleep on the sofa. I wasn't impressed when I had to get up at 6 and get dressed for dinner. But I managed with a smile. See!

Dinner didn't initally go too well. The Chinese seamed to think that we hadn't booked and didn't have a table so we ended up at the Red Lion in a turned which was bloody gorgeous! It's really improved recently and the food I'd just so much better. I had a lonely night though, so alls well that ends well! 

I have clinic tomorrow and need to get some sleep if I'm going to get through without an admission. I shall just get up early and neb lots tomorrow before I go, so that my lungs are at least acceptable when I go for lung function. 

Anyway, I blog again soon about my appointment and the rest of my birthday! 

Buy for now,

Kirsty x

Its been ages since I last posted, but that's mainly because not a lot has happened, but at the same time - so has a lot. So in the past month, the days seem to have all merged into one long blur - a lot of which has been spent in bed!

I have managed to watch seasons 1-8 of 'Grey's Anatomy' again - in less than a month.Which kind of shows you how little I have been doing! I have also been doing a lot of crafting and have taken up journalling, it keeps me occupied and gives me something to focus on which I really appreciate :) Here are a few pictures!

This is my sock cat! I made her out of a pair of knee high welly socks, buttons, emboridery thread and lots and lots of stuffing! She wasnt too hard to make to be perfwctly honest, Its more knowing which bits to cut and sew to make the right shape. Though it is tricky trying to get the head and the tail on neatly, and in the right place - it takes some repositioning and hidden sitiching to get it looking good.

She has a long tail and and kinda sits up on her back legs, though they can be a little tempermental so she spends a lot of time just laying there. As you can see - her and Tilly are getting along well ;) I thought it was so cute when I saw her snuggled up to a giant cat shaped sock!

I have also made a cushion which was inspired to some degree by one I saw in a shop. It was twenty-odd pounds and so I decided to make my own, for no more than a few quid. I stuffed it and gave it to my nan for her birthday earlier this month, I think she liked it - I took a picture first so that I don't forget what it looks like. I am planning on making another one soon for a friend, just waiting for some felt to arrive, hers is going to be done in brights, so purples, red, yellows etc...

All of the fine detailing is done in embroidery thread, the main blocks of colour are done in felt and I have used buttons for some of the flowers. It could have been a little neater, but for the first attempt it was good enough!

I've been art journaling too! Thanks to the joys of pro-markers and stamping they have been coming out rather well and I have been getting some nice results. If i'm honest I have been just experimenting and seeing what I can do with different bits and pieces. Here are some examples...

Aside from the obvious sheer number of craft projects running simultaniously, I have also started my OU courses this month and I am really enjoying them. I have been getting a plan going each week saying what I will try to get done, most of the time I have stuck to it, but I have had a fair few days where I haven't felt up to it - but i've managed to catch up. I was sitting there reading one day, and having a neb when I realised how ironic this was...!

Nebbing and reading about COPD was rather amusing! I must be a bit of a weirdo, but it did make me giggle...! 

So far my course has been really good and I am enjoying having a purpose again. This is my time now. It's my chance to to get what I want out of my life, and I will do it, I won't let anything stand in my way...

I know that some of you like to know how my ole bagpipes are doing! Things have been rather up and down over the past month and I am in a bit of a rubbish lung phase at the moment... I have been feeling very unwell for the past five days or so, I've had a bit of a cold and naturally my lungs don't like that. I've had a fair few moments when it looked like I would have to admit defeat and head to hospital. But it's my birthday (...which is today!) weekend and I wasn't going to spend that in hospital! So I've been pushing myself to keep going.

I have managed to keep myself going with plenty of prednisolone and increased antibiotics... I normally take clarithromycin  in a modified release tablet so that I don't get too many chest infections, but I added doxycycline too the minute I felt it going to my chest! I'm also on split dose prednisolone 30mg twice a day and nebs every 2/3 hours. I still feel grotty but in the end I'm here and able to enjoy my birthday, and that's all I can ask for! 

I also managed to get an abscess and crumbly tooth.... So I am in pain. I don't do things by halves do I ?! So on top of all of the increased asthma stuff I am on amoxicillin, metronidazole and other pain meds. Here's to hoping it helps! 

Anyway, it's my bed time now - I need to sleep and ready for my birthday fun! Ill post tomorrow before bed and update! 

My blogs are like busses! Nothing for a while then two at once! Emma has just got on the train home and I am on the bus, so I thought I would update you on what has happened during her visit!

For those of you who don't know, Emma is my fellow wheezy friend who I met on an Asthma UK weekend in Birmingham. We meet up occasionally and she comes to stay at mine - which normally ends up in some rather funny moments being had and lots of tea and biscuits being consumed! 

I met her from the bus on Monday evening and we went to sainsburys to get some drinks and nibbles. Que lots of junk food and fizzy drink (we are so mature)... Then we went back to mine and had dinner before watching some Greys Anatomy (she is a fellow addict) and preparing some pretty awesome ice cream... 

My gosh it was goooooddddd! 

By the time we had finally stopped nattering and Emma had eaten a WHOLE PACKET of choccy hobnobs it was gone midnight and definitely time for some sleep. 

We didn't have anything major planned for Tuesday so we had a lay in and went into town around midday. We went and did the usual weekly drugs run and had lunch in town, twas very yummy! Then Emma acted like a child in the supermarket and decided to climb on the back of the trolly... She got a few weird looks. But then she is unique in many ways! (Love ya really Emma!)

Once we had arrived home and packed away it was craft time! Emma decided to use some of my extensive supplies to create a scrapbook of her life and her bucket list. She did a couple of pages which looked really good - but I didn't tell her that, after all her head is big enough as it is... Then it was time to cook, eat and watch some crap on tv before bed. 

That brings us to today... For a while I have been worried about how things don't seam to be getting any better with my asthma. Im still on pred, and needing regular extra doses about once a month to keep me out of hospital or to fix me up a bit more whilst I am in! I've always been rather intimidated by my consultant - he is rather stern so I get a tad nervous at clinic. This month I took Emma with me for morale support and she was super! 

I told him about how I feel we have come to a standstill, and that things are not getting any better, despite being on everything which he uses. He was under the opinion that there was nothing at all which may help out there, and said that things such as s/c terbutaline and steroid sparing agents don't work. Which means I had reached the point where it was time to accept that I need to stay on pred, because its the only thing out there that will keep my asthma under some sort of control. But that we should keep pushing it to see if we can lower the dose of pred because it is doing so much damage to my body. 

However, every time we have tried to lower the dose (at least three times) I end up in hospital and on an even higher dose than before. Making it a pretty pointless exercise! I could learn to accept that I will always require some sort of  maintenance steroid, if I knew that we had tried everything else. But we haven't, and in my opinion the other treatments must have some value if they are actually used by other centres. To me, even a 10% chance of success is better than a 0% chance, and a future of pred and all it's side effects. So after me voicing my opinion he suggested a referral to a tertiary care centre, like heartlands hospital, which has a severe and brittle asthma unit. Which, if I am honest is what I wanted - but I wanted him to suggest it, not me, so that I might have some chance of shared care! 

So basically I am now awaiting a referral to heartlands and keeping my fingers crossed that they will be able to help. If they can't, I'm going to have to start making some decisions about what I want to do from there.

So, after that we buggered off to nandos and had some piri piri goodness! We were both starving and thirsty so it was like we had reached some sort of Mecca! Emma was a wimp and had piri-tamer on her chicken - no spice involved! I went for hot with some extra hot sauce on the side. Cause I am tough and that is how I roll. Haha! Once we had munched our way through that we headed off to costa and chilled there for a bit before Emma's train was due. Whilst we were there Emma was put behind bars, right where she should be! 

Her crime? She forgot my cake order and  made me share a piece of tiffin and some window cake with her. Never forget a roid raged chipmunks cake order!! 

After that it was time to say good bye. I always hate that bit of a visit, but we have plans to meet again in November and December so it's not so bad! She is starting to become a bit of an addition to the household, I made her make her own drinks and breakfast! 

Anyway. That's pretty much it, there hasn't been anything worth reporting since then. I've just had a lazy day and done as little as possible... I am going to sign off now, but will update soon, as its invisible illness week this week so I feel like I need to mark it somehow!

Nighty night -
Kirsty x

So, now I've got my head bit more together I shall update you all on what has been going on in my not-so-exciting life! Though this is currently proving rather difficult as I have a memory like Swiss cheese and can't quite recall what's been going on! Is it sad that I am actually running through the days in my head and trying to remember what I did?! Anyway, however sad it is, it has yielded some results as I have something to write now. Amazing I know.

Thursday 29th August...

Woke up feeling pretty damn awful, in pain and wheezy, so I had to cancel the appointment I had at addenbrookes. Thankfully they were great about rearranging and I have got another appointment booked already for next week. I spent the day at home chilling and not doing anything much, by early afternoon I was feeling a bit better so I saw my friend Stacey for a bit.

Saturday 31st August 

I spent a lot of time working on my camp blanket on Sunday, and managed to get most of the badges sewn on, and then I glued the rest down. I glue them and sew around afterwards, as it holds them down... Here's a picture of my blanket!

There was also an incident with my lovely cat, Tilly. She attacked my foot and ran off. So I sprayed her with a water gun. Then we made up and became friends again! But, as I climbed into bed I accidentally kicked her in the face. I felt so mean!!! Que me standing at the top of the stairs, calling down to her and throwing dreamies in an attempt to tempt  her back!

Tuesday 3rd September 

Sienna's 7th Birthday was on this day... It was crazy to think she is such a grown up little girl, when I can actually remember her being born and visiting them both in the hospital. I went over to drop off her prezzie and she also had Isla there, who was attempting to walk! She looked so cute... 

I also received my mailing from the OU of all the course materials for one of the two modules I am starting this October. Having now had a look though I am very much looking forwards to getting going... This is mailing one of two!

 Shouldn't be long until I get the last one now, then I will be all sorted and ready to get going.

Thursday 5th - Saturday 7th September -

My friend was going away for a night, some sort of family do, so I went to Ellie's in evening and stayed there whilst she was away to look after her animals and keep them company. She lives in a village, which is rather small and doesn't have much in the way of public transport so entertainment isn't readily to hand! Thankfully she has one heck of a stash of craft supplies so I went nuts in there and got busy playing with stamps, a big shot and promarkers... Amongst a few other things!

As you can see I managed to cover myself in stamping ink...

  I also made some Ellie owls for her craft room door :) 

Sunday 8th September 

Ellie had arrived home on the evening of the Saturday and so we decided to go to a craft fayre which she had read about. It was really good, lots of things I would have loved to buy, but not enough money! I did get a few good bargains though and lots of ideas for things to try out. My plan to only take cash definitely saved my card from getting a good bash in! 

Anyway! That leads us to now, and after Emma, who has been here a couple of nights, has gone home I will fill you in further... Ill be able to tell you all about her visit and my clinic appointment today. 

Nighty night,

Kirsty xx 

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...

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