Visitors :)

Hi Everyone,

Its been quite lonely the last few weeks waiting for physiotherapy, stuck on bedcare no company except phone calls and carers, so i had a huge surprise today when two great friends came to visit on the train :)

after a couple of hours to chatter and laugh, we had a take away and enjoyed catching up!! Ive missed that so much.

so today has been a good day. Forgot all about the nightmare situation for a while which was nice. I still have the odd day like the other day I watched the film knowing and got a bit freaked out - couldnt tell you why kind of made me think i suppose and it freaked me out a while. I am slowly getting stronger in all areas except the weight-bearing/walking bit - hopefully the physio can help -once it all gets sorted and they visit me at home. fingers crossed this wont be too long now.

will keep you all posted anyways. Thanks for the visit guys - love you both to bits it was a lovely surprise and i am so lucky i have such fabulous mates.

all my love to all - will post again soon

Rattles xx

Overdue Update (poor neglected blog...)

Hi everyone,

Hope all is well with you all, I have soooo much to catchup on its been too long - for that I can only apologise.

Some people know that my blog used to be open for anyone to comment freely on but this was abused by someone and as I result it knocked my confidence and stopped me feeling I could be as open and honest about everything that has been going on without the fear of this person continuing their messages etc - I have swapped to comment moderation for this purpose so I can Still see any comments but can moderate them before they appear on my wall. I would hate anyone to feel they couldn't start a blog of their own for fear of the same and will now continue blogging in the open, honest and frank way i always did before it all started.... So here goes nothing!!

Some folks who know me personally know I am a Christian, I have been tested to the extremes in recent years. Everything felt like it was falling away like ice melting on a glacier. I worked hard and everything I achieved meant nothing as it slowly crumbled away. I wasn't sure what to do, lost my job as I was so poorly much of the time and they got fed up of it. After that came the stark realisation that I had lost my job and still had a mortgage to pay. Blind faith (and possibly an element of denial) got me through.

Its continued over the last 3 years to get steadily more difficult to do thing - lack of physical conditioning, not in a routine I did try to convince myself it was anything other than what was really happening - possibly didn't want to believe things were as hard as they were at times - was told I needed a stair-lift and turned it down as - it was my only form of physical exercise etc etc... And so the cycle continued I would at times sit on the 3rd step and cry for an hour as it felt too much to get up the 13 stairs I had - every step hurt. But - I kept going believing things could only get better.

They didn't, I had an accident which set me back by leaving me virtually bed-bound for almost 3months - I recovered and started doing revision and the mountain of coursework I had to do for uni. I did my exams (and miraculously passed 2 out of the 3 - bring it on!!!) Just got coursework to complete for the 2 i passed and 1 other module now... I'm very far behind my peers, They are almost finished and I'm barely started. The credits I can get from the last 12 months will go towards the new style MSc in Biomedical sciences. More fitting I think except that i cant do specialism I would like (thankfully the units I will carry forwards are this subject :)) I wasnt able to start the new course this september as true to form straight after the exams I ended up in ICU!

Since the end of August to the beginning of November I was in and out of hospital. With progressively worsening symptoms. My skin kept ulcerating and was chronically infected - my kidneys and liver started to play up, at one point I was yellow whilst in hospital. My legs were really weak and kept going from underneath me leaving me in the situation where I was and still am currently bed-bound till I get intensive domicillary physio. It didnt stop there - Dermatologists felt I needed further investigations and I found out I have a progressive auto-immune disease.

I have cried too many tears to count recently. I always wanted a family of my own, I see my dear brother with his wife and two gorgeous boys (yes I have a new nephew :) he is so cute but i have only met him once in his 6 months so far - hoping to see him soon as really want to be able to get to my family at christmas!!) I love my family dearly - and think my brother is the best-I have 2 gorgeous baby nephews but I do feel a tinge of sadness too at times when I see him with his little family and realise I may never have that - I may be lucky to find a partner who can deal with things - it seems to always be a stumbling block at the start that never seems to get overcome in any potential relationship - and it tires me when every man I do get close to would like to 'stay just friends...' I want to share my life with someone, whther it be a long or a short life - I just want someone to share it with.

Anyways the new diagnosis I have is to be confirmed in the next few weeks but the doctors anticipate I will gradually become more unwell. now require NIPPV (non-invassive possitive pressure ventilaton) at night to assist my breathing and have an archaeic machine the hospital gave me for this! I am now also on long-term home oxygen anywhere between 1 and 5 litres per min 24 hours everyday dependent on my blood oxygen levels keeping them above 90%. This is sadly not the only change I have had to get my head around. I have a repeat scan (CT) of my chest in 6 months if my condition has deteriorated further they may consider other options - further chemotherapy drugs maybe needed to supress my over-active and very naughty immune system from destrying any more of my organs/tissues. Im currently on high dose steroids and low dose chemo so there is some room for manuvor Im totally terrfied though.

My thoughts vary throughout the day to trying to stay possitive and keep doing my uni work in the hope next september i can restart my course.... I also have my disabled student union rep position to keep me focussed on what other students are having difficulties with/need help sorting out and what adaptions our union may need to do to make the union/uni more accessible etc... I like having stuff to do its been helpful as a bit of a distraction for me on the days i have felt okish and my mind has started to focus on the bad things that are happening.

So that was my first post in a while. I will continue to be as honest and open about the things that are happening here, and will try and be a better blogger too.

Take care everyone and I will post again soon, GP calling me every few days to see how things are going with the NIPPY and stuff so I am lucky to have her keeping such a close eye on things and have her support too.

Speak again soon
lv Rattles Xxx

quick catch up (Sorry its been sooooooooo long!!)

Hi All,

MSc going ok coursework all good marks -exams not so well but I have spent a total of 3 whole months in hospital since september and its been tough going.

I missed an exam in May. Now have 3 exams in 2 days in August. Having a discussion with course leader and student support officer tomorrow (well later on now really lol)

I was elected as the disabled student union rep and my role started at the beginning of this month soits all go even though i have been housebound (well bedroom bound) since may when i had a very nasty car accident. Smashed my knee up quite badly and its still healing grrrrr!!

So thats kinda what i have been up to. Will post more when I get the chance ebtween revision and stuff.

Hope everyone is well Lv Rattles Xxxxx

Really overdue update - idiot drivers should be.....

hi guys,

again i have to apologise for my not keeping the blog up to date...

so whats been happening in the land of rattles? ? ?

as a brief summary for now, i had my 1st lot of exams for my MSc - and after being ill for 8 of the 12 weeks the exam was really hard. I'm resitting it in August now.

Semester 2 started and was full on from the very start. we had a contact week followed by a private/distance-supported learning week contact weeks were great with interesting lectures etc, the weeks between were extremely full on. usually consisting of 5-10 hours worth of e-lectures with questions to answer on each topic and also involved case studies where we had to work out what the patient had, and why we thought it etc - usually by presenting this to the rest of the class. This was just for 1 module which had been split into 2 parts. The other module was a lecture each contact session and planning presentations in the weeks in between sessions. Every contact session following the first one in our set groups we had to present a condition related to the previous weeks lecture. By the end of this semester i don't think any of us get too nervous about presentations anymore lol....

i broke my ankle, then once it had healed went to my cousins wedding and had a lovely weekend break. Then crashed on route back home in the small hours of the Monday morning of my 1st semester 2 exam...
After calling 999 the police thought the car would be OK to finish my journey, i didn't sleep that well that evening. half way trough my exam later that day i had to stop the exam, My knee had swollen to 3 times normal size and there was just a tiny wound on one side of my knee-cap. i ended up in A and E who thought it was probably just badly bruised. after spending a further 4 days in agony and the wound gradually getting bigger and black in colour i saw the on call doc. i was admitted the following day and had to have an operation on my knee :-{ had to have an epidural as well as too risky chest-wise for a general anaesthetic...

had a VAC pump attached for 3 weeks and still in the knee brace now {prob got 2-4 weeks of this left to endure now}. So currently bedroom bound. i cant get downstairs by myself and need 2 people to help me at the top of the stairs at the moment due to neither leg weight - bearing.

i have however read a haematology text book from cover to cover {twice},
Managed to break my iPhone by spilling tea on it and did same to laptop - which is annoying in different ways... several letters on the keyboard are not working when they are pressed... they include the 'h' 'i' 'j' 'k' and 'l' as well as all the numbers with symbols so in order to type anything i have to google 'abcdef' it then correctly assumes i need the alphabet and then its a case of copy and paste things into place... takes forever.

2 lessons learnt over last few months...

the first other people on the roads are idiots at 2am and don't care who gets in their way on their journey, Will explain what happened in accident next time as I'm loosing patience with the copy and paste thing now... gggggrrrrrrrr.

and finally if you crash into the central reservation of the motorway at 70mph {ish} you are indeed lucky to be alive but it really does hurt after a wee while so don't pretend your fine with no real injuries etc as once the shock wears off it REALLY hurts.....

hoping i will be up and about again soon but till then will try and keep my blog up to date to relieve some of the boredom of daytime telly... :-}

Take care everyone and hope your all well,

Rattles Xxxxxxx

Words cannot say enough...

Hey all

I found out a good friend had passed away last week. It was hard to contemplate that someone who had such an infectious enthusiasm for life and always seemed to be creating or doing something even when she was so unwell always planning the next journey etc... I was shocked to hear the news and Shen I read it on facebook it was like an ice cube had gone down into the put if my stomach shock and sadness that I had never had the oportunity to meet Bex in person. Yes we chatted about all sorts and laughed and shared stuff over the Internet!! I went to the celebration of life ceromony which was full of sorrow and
Laughter in equal measures. I miss her

Nothing can make it alright - i felt so deeply for her children similar ages to myself- I couldn't beat to loose my mum and I cannot begin to understand the deep pain and loss that her four lovely children will be feeling! It's taken a while to write this post! It has Been difficult to write Bex you were one in a million and we will all miss you so much.

Rest in peace and breathe easy. xx

Blimey its been a long time..... (sorry).

Hello there, i am still here - sorry for the distinct failure to blog lately. Its been a little crazy at my end.

I started my MSc in september and that has been keeping me busy even though my course is only one day a week the sheer volume of work from one day of solid lectures is crazy. I am at this level expected to do an additional 20 hours of reading around the subject via journal articles etc every week-this hasn't happened on a lot of weeks unfortunatly due to one thing or another.

So the course, i love it its a fab masters course and exactly what i needed in terms of keeping my brain ticking along rather than being fed up and stressed that i wasn't doing much with my days etc. The lecturers and support staff have been fabulous i cant fault them at all. I have been given so much support that its enabled me to get to where i am now - only a few days till my finals for the first semester modules - eek!

So. I ended up in hospital twice during semester one and the first admission was for 17 days meaning i missed two of my uni days and about 8 hours of lectures. I was lucky that the support team when i called to explain the situation sent a notetaker to the lectures for me to take notes on my behalf. I was back for a week and then ended up back in. Unfortunatly the second admission's discharge was hampered due to the unprecedented snow fall at the end of november/beginning of december! I finally got home after another 14 day admission. Again a notetaker took notes for me in my absence. The notetaker is now a regular thing for me if im there or not they will take notes for me which is great and much less pressure for me as i am still not 100%.

I had a mini module taught over 3 full days which im glad came just before the christmas holidays as it totally wiped me out. My group got the best porter prize which was fab as it was thrown together by the 4 of us in one day instead of several weeks mostly due to my being poorly in hospital :(

So the mini module went well, its still ongoing tho the teaching is finished there are a few bits of coursework we have to do some on our own others in our groups etc but this module is fairly straight forwards and has no exam - yippee!

I spoke to the course leader about my absence and catching up and asked to move a module to next year which was agreed as its just too much to catch up on-id missed the coursework deadline hadn't been to the lectures explaining the coursework and also had around 12 hours of lectures to catch up on and a big exam to revise for this module and also had coursework for the other module (not due in till end of jan) and the same catching up and revision for that module. It was not really possible to do it all.

The course leader is lovely and taught me during my first degree so she knows me fairly well. She moved the core module to next year. I had only a few options with what i could move to next year as my course as it is now wont be running next year due to nhs cut backs and the increase in tuition fees staff from nhs hospitals are just not being sent on the course as its too expensive for the nhs budget- the lack of applicant has meant i had to move the core module which will be running in some form next year as its a core module for several different MSc degrees.

Anyway after that ramble, i am currently revising for the one exam i have which is this coming monday. I haven't managed to get my dragon software accurate enough to use in my exam so i cant use the laptop during the exam unfortunatly. My only other option is to use a scribe so i have a session later today to meet her and to be taught what to instruct her to do how to use her etc. I also have a meeting with one of my lecturers to go through a lecture i missed whilst in hospital as its too complicated to fumble my way through-he's going through the 2-3 hour lecture in 30 mins lol!

I have been concentrating on trying to understand the lectures i missed first and getting my head around those before revising all the other ones. Thankfully the support team put a piece of software called read and write on their laptop for me to use whilst i am still waiting for my DSA funding. Most things i already have in some way as they have leant me dictaphone and laptop with various support packages on so its been fine so far. Next semester i will have a mentor aswell so that should be good too.
My support worker has been great to as i haven't been very well she has been fab as self propelling my wheelchair up some of the hills here between campus lectures would have been incredibly difficult without her assistance.
So thats whats been happening here really. Loving my course though i am a little snowed under at the minute. Exam is monday morning bright and early, i have rest breaks extra time and a scribe for that and will be in a room of my own so thats quite a lot less stressful for me. :-)

Once the exam is done i have two pieces of coursework to complete- one for the module i have the exam for and the other for the mini module-which is a rather difficult statistical analysis problem.

Will update again once this exam and coursework is out of the way and will try harder to keep my blog up to date. Im really sorry its been so long it has just been a little crazy here and time has literally flown by at incredibly fast pace!

Hope your all ok. Take care, chat soon
Lv rattles Xx

hospital dramas :(

hi all,

Again i must apologise for my recent lack of blogging however, as always i have excuses! So firstly im sorry i've been rubbish at this blogging malarkey lately and secondly i will explain....

So - since april i have had an infected venous leg ulcer among other bits of stuff too. But mostly the leg ulcer has been a pain. I tried to carry on regardless for a while and had two lovely days out with a couple of good friends. One trip to the big shopping centre near where i live and the other to the steel museum which was split into different zones and had everything from a fire tornado through to indoor rain which was cool! Spending time with my friends was fab and we all had a real giggle which is always great. I was however not very well really and had been on antibiotics from april with only about a week off them from then to now! Various different antibiotics were tried to get on top of the infection but being on antibiotics for such a sustained period of time was playing havoc with my adrenal insufficiency making me drowsy and weak and leaving my blood pressure really very low. I ended up getting admitted to my local hospital as i had a fever and was right at the start of an adrenal crisis. The drama began as soon as the doctors tried to take bloods and put a canula into one of my veins. This proved rather tricky and after the first doctor had had 6 attempts he got his registrar to try she tried a further 8 times before finally managing to get a very small paediatric canula into a small vein in my foot right on my ankle! Was very painful and didn't last very long.... Due to the infection i had i was unable to keep much down without throwing up even with my syringe driver of cyclizine (my antiemetic). Due mostly to vomiting so much i had not managed to keep my theophyline down for almost 5 days so my asthma started to kick off too, i ended up having magnesium and hydrocortisone through this canula and was put on more nebs and 15 litres a minute of oxygen! ICU were called down to see me but i was getting there once they then started a theophyline infusion to get my levels back to theraputic range! At the same time the canula was starting to get very sore and after a day and a half the nurse decided to remove it and recanulate me. This didn't work. After 5 people tried several times each they decided to give up and hope that i would be able to keep my meds down on stronger antibiotics! After another 3 days the infection got so bad i ended up in a full blown adrenal crisis so and they moved me to my usual ward from the surgical admissions unit. On this ward they instantly gave me an injection of steroids and continued to do so every 6 hours as per the adrenal suppression protocol which unfortunately had not been followed on the first ward which probably contributed to me getting so poorly so quickly! Anyway thats a different gripe which is going to be dealt with by my care coordinator who is rather cross with the surgical ward for how they dealt with me as when she came to visit me i could hardly stay awake and was quite fevery and had dangerously low blood pressure apparently. :(

So - on my usual ward where the staff all know me well they tend to know when im really poorly as i sleep the clock round till i feel better they just wake me for meds and i go back to sleep. The oncall consultant came to see me and wanted to start two lots of IV antibiotics again i had several doctors try several times to get a canula into me but they couldn't get a vein as all my veins were either too badly scared from previous admissions or collapsed because i was so poorly. In the end they decided that as it was only really for antibiotics if i tried to drink plenty of fluids then i could have the antibiotics intramuscularly... This didn't quite register with me at first but i soon tired of it. Two days and 8 injections after starting the antibiotics and sleeping around 20 hours each day as opposed to all day i refused to let them do the IM jabs i know it was stupid looking back at it but it was really painful and i had had enough of it all, i thought if i refused the jabs then they'd have to try and find a vein again for IV's which once the canula is in is a whole heap less painful!

They didn't. I was prescribed the kiddies syrup medicine to try but they left the IM injections written up for if i couldn't keep the syrup down. I couldn't even take the syrup. I tried. It was strawberry flavoured but very mild strawberry, the main flavour that came through was more of a rotten egg kinda taste which did actually make me sick. I ended up having to put up with the IM injections as just missing two doses had made the infection spread further up my leg and made my adrenal issues play up more! The nurses were good though as they knew it was painful as i was so bruised after just 3 days and 12 injections that they started giving me a good dose of oramorph before each injection and they also (most of them) injected the fluid very very slowly as the faster it was injected the more painful it was for longer and it bruised more too. Anyways, i was in for two weeks and had about 11 days of IM injections then i was put on oral meds and made to stay an extra day to make sure my adrenal issues were stable still and that the infection didn't seem to get worse again off the stronger dose of antibiotics! During the admission i saw the tissue viability nurse who decided i needed to have my leg all strapped up to my knee with special bandages to help improve blood flow and the healing of the ulcer, though towards the end of my admission i developed another ulcer on the same foot so i now have two nasty unhealing ulcers on the same leg. They are getting a bit better but they are also still quite infected. I finished my last dose of my discharge med antibiotics yesterday but the district nurses reckon i will need some more but are waiting till i see dermatology tomorrow about them. Its been a little mad to say the least!!

Hopefully things will heal a little quicker with these new dressings and bandages etc but i kind of have to just see how it all goes really. So, thats whats been happening healthwise bit of a rollercoaster ride.

I have some fab news though to end this post with! :-) i applied to go back to uni in september to do a part time masters degree as i wanted to do something productive with the time i cant work so that it'll look a bit better when i do try and get a job as i can say yes i have been unable to work due to ill health but i have done this masters degree whilst i have been trying to stabilise my health conditions! Thought it may just help me get a job once things are back on track. I applied to return to the uni i did my biomedical sciences degree at and whilst i was in hospital i was on the net on my laptop and recieved an email from the uni confirming that i have an unconditional offer to start in september. :-) i am thoroughly chuffed to pieces about it! Cant wait. I had to go down to uni today to have an assessment of need interview so that they can sort out my care and support needs for september as my disabled students allowance will not be sorted in time for my course starting so they need to try and get a temporary package in place prior to me getting the DSA funding and stuff. It was good really they have been incredibly helpful and very accomodating which is great as i was worried about a few things like how id manage getting between lectures etc, they have been good though and are sorting it out for me to be able to use my chair etc whilst im there and i will have a space to park the car outside the university (if im allowed to drive again by then)!

So that is where i am at at the moment. Things still grumbling along no better no worse but i did have some good news so it wasn't too much doom and gloom. I have a few exciting things coming up too. I have a good male friend staying over this weekend and in a couple of weeks a good mate is staying for the week so it'll be nice to have a bit of a social life again for a little while!! I also just had a birthday. Yesterday. I am feeling rather old though lol i cant kid myself im in my mid twenties anymore-i am definatly unquestionably in my late twenties which is disturbing but thats life, just another year closer to that dreaded 3-0! :( i spent this birthday with my family which was lovely i was spoiled rotten which was nice and i did feel very blessed my family are my rock at times and after having such a rubbish few months they made such an effort for everything to be perfect which was just lovely.

Anyways i am gonna leave it at that and try again to get some sleep been struggling a bit to sleep as its very very painful so thought id bring my blog up to speed with things. I hope that everyone is ok and staying well and enjoying the lovely weather! :-)

Take care and i promise to try harder to keep this blog up to date! (and sorry this post has become a bit long! Guess i had a lot to catch up with! Lol)

Loadsa lv Rattles Xxxx