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
Welcome
Welcome to my page, which I hope will entertain you in some way, shape or form. I am your average 21 year old, I laugh too much, have moments of obvious immaturity and spend far too much time procrastinating. A lot of my time is spent dealing with my health, I'm in and out of hospital with severe allergic (brittle) asthma most of the time. I hope, however foolishly, that this page will provide you with an insight into what its like to live in my world, from admissions, clinic appointments and many, many days in bed.
Tuesday, 23 July 2013
Sunday, 21 July 2013
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
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
Friday, 19 July 2013
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
Tuesday, 16 July 2013
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.
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.
Thursday, 11 July 2013
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
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
Sunday, 7 July 2013
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!!!!
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!!!!
Monday, 1 July 2013
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.
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