What its like living with a series of allergies?

japanese nut allergy card

There’s been a increase in the number of allergy related news stories recently which I’ll be honest I welcome but its also really sad news too.

Allergic woman died after eating burger

Amy May Shead’s family warn ‘allergies can cause life-changing damage’

Pret baguette allergy cases before death

I felt very strongly as someone with multiple allergies of different strengths including the deadly nut/peanut. Its interesting reading Jessica Pan’s piece about what its like living with a severe nut allergy.

I know the word for peanut in Spanish, German, Italian, Greek and Icelandic. When I lived in Beijing for two years, the first sentence I learned to master in Mandarin was, “If I eat peanuts, I will die.” Then, to really get the message across, I would mime death. I’d clutch my throat, roll my eyes back and stick my tongue out. My audience, usually Chinese waiters, would laugh or look bewildered, but it was the most effective way to get the point across. It was blunt, but it had to be. I had a severe peanut allergy and I struggled to convey the gravity of the situation to locals in China, where nut allergies are rare.

I’m pretty much the same but having travelled around a lot. I have to be very clear when I say I’m allergic to nuts, peas, beans, coconut, fish and seafood. It was Japan when I learned to print out my allergies on a piece of paper.

Why paper? Because its something I can give to the wait staff to give to the actual kitchen instead of relying on the wait staff to convey all the allergies I have. One can be easily missed and all hell is unleashed into my body.

At dinner on my first night in Beijing, I told the waiter, “I’m allergic to peanuts. I don’t want peanuts.” He brought over my food and I peered into a dish, which was sprinkled in peanuts. “Peanuts?” I asked, pointing, knowing they were peanuts. He glanced at the dish and said, “Just a little.”

“Just a little” is the difference between alive and dead. Between the best holiday ever and an emergency trip to the hospital.

I’m happy to say this is less and less happening in the European countries I go to, due to the change in the law around the 14 allergens. Although I’m also getting some slightly more intolerant responses too like those in LEAF.

Now to be fair I’ve been told a few times especially in Japan, go away (more or less) but having to sign a wavier just makes my blood boil.

I’ve learned a few survival strategies along the way, though some of them I learned the hard way.

Friends who travel with me know that they must be my designated “tasters”. Most often, this task is left to my poor husband. So many holidays, so many memories, and so many moments of me shouting in his face, “Do you taste peanuts? Do you?!” A curry on a beach in Malaysia, hot pot in Chengdu, a baklava on a balcony in Greece, all with me staring at him intently, praying for the green light.

I have similar starting with the allergy card, ask friends, a touch to the lips and then a nibble. Wait for 3-5mins with water and antihistamines at the ready. I tend to eat between 2-5 depending on how certain I’ve eaten something allergic. I never leave home without antihistamines now.

There will be foods which I just won’t take the risk with and that does include some of the thai curries. If I think it might have something I’m allergic to in it, I will weigh up in my mind how close I am to my home, does the restaurant practice good separation in food preparation, how much is an allergic reaction going to ruin the rest of my day?

Maybe I should just stay home and not travel, but I love Asia and I really, really love Asian food. Instead, I take precautions: I nearly always carry an EpiPen with me. I also have a routine I do when I meet new friends or colleagues: I show them where I keep my EpiPen and I say, “Guys, just not through the heart, OK?”

The one and only time I was sick in Japan due to peanut sauce, I downed about 4 antihistamines drunk a lot of water then jumped in a taxi back. There is no way I want to be sick in a restaurant bathroom again! Especially because I tend to fall a sleep straight afterwards and trust me theres almost no where worst you want to fall a sleep. I assume its the antihistamines taking effect but it helps, just like a full sugar pepsi/coke after I wake up. Maybe its the sugar and the goopiness of the cola which helps line the throat and stomach.

allergy tests bottles

I don’t carry an Epipen due to having high blood pressure and idiots watching too much pulp fiction. (not the heart for goodness sake!). Given at the wrong time and I’m dead full stop. I’ve managed to stay alive by being super cautious and its worked for me.

Just because I don’t have an epipen doesn’t mean its less serious by the way. I’ve seen many people instantly think it cant be that bad if I don’t carry an epipen. No I’ve been very fortunate, cautious and suspicious of everything I eat or drink. Trace amounts don’t have enough of a effect fortunately too.

I sometimes cook with small amounts of Soya sauce but give me Tofu and its game over. Likewise I can eat Tuna chunks out of a can but fresh fish will have my body forcefully getting rid of it in the quickest way possible.

I try my best to avoid peanuts, but they lurk in so many dishes. I never order massaman curry, desserts with praline, anything with mole sauce, trail mix, granola or Thai salads. No to anything that even looks like satay, no to exotic alcoholic spirits. All foreign chocolate must be studied meticulously.

Everything is studied heavily by me and if there is no ingredients, I will likely avoid it. This means street food or stuff made on the fly almost impossible. Everyone talks about the street markets of Osaka in Japan but I found it impossible to eat there.

To be honest, although Japan was very tricky. Rules like avoiding all soup/noodle things helped reduce the contact with allergens. I think I would have a even more difficult time in China or Thailand. The pure thought of having to deal with a barrage of allergens makes me not want to go. Something most people barely think about when flying to places. I would love to be one of those people trying different things but its super dicey and not worth the risk, so I avoid them.

The puking bit is actually fine. It’s the waiting bit that is the worst. It’s looking for hives on your tongue and swelling in your lips and wondering, “Is this the stupid mistake that ends my life?”

Puking is the worst I’ve had for a long long time, aka its been a long time since I ended up in hospital. I’m one of the lucky ones where my allergy doesn’t send me straight to hospital. However this should never be dismissed as those hives on my lips and tongue are nothing compared to the endless scratchiness of my throat. Then the swelling and before long its difficult to breath. This is also when I desperately need my inhaler (not something I carry around all the time) but can’t pull enough air through my throat to breath correctly. At that point I realise its all down hill, its the point when I start to make mistakes due to the lack of oxygen going to my brain.

Its scary but I’ve only had a few times when I was much younger and it does mean slowing down and doing less.

I recently had to learn the Polish for peanut, frantically searching for it on Google Translate after carelessly taking a bite of chocolate in my hotel room last summer, although I already knew it was in the chocolate. It was that same ominous tingle on my tongue and my throat, followed by hot fear racing through my body.

Google translate is my friend, its not perfect and in some languages slight wrong but it gets the point across and thats all I need.

Look, I know allergies are boring. While visiting Koh Samui, I mentioned my peanut allergy so much that the Thai staff at my hotel greeted me every morning with, “Hello, Miss No Peanut!”

Its something most people never have to think or deal with. For example I’m writing this on a train from Bristol to Manchester with a change at Birmingham. On the previous train a woman sat eating cashew nuts, then dropped the bag on the ground (litter bug). Now on my last part a woman sits eating a Kitkat peanut across from me. I lean back in my chair but the smell of peanuts is heavy and I dying for her to finish the bar quickly instead of little bites at the edges.

The smell of death just hovers around and it makes you want to run for cover. I’ve drawn comparisons to when someone is smoking in your face, you might be able to deal with it for a short while then you have to move away.

Its something most people never think about but I do all the time! I’m also consciously watching where she touches on the train, to make sure I don’t touch it too.

Allergies are boring I get that, everytime I have to pull my allergy card out at a new restaurant or place. But its deeply dangerous for me and many allergy suffers to underestimate them.

My hope is stories like mine and Jessica will put a human face to the jokes about throwing peanuts at people. Pret’s labelling is just horrible as I found out that the Korean BBQ soup included fish. But I only found that out when asking for the actual legal allergy menu and not trusting the ingredient menu they include in store.

5 years ago, I was discharged from hospital

Ah the end is just the beginning

GREAT NEWS!   Ian was discharged from the hospital this afternoon!  He is going to Bristol for a while to recouperate with his family and asks that people leave off contacting him directly for a bit as he’s got a month’s worth of email/messages to get through already and his phone is playing up at the moment.  He hopes to be back to his usual online presence soon, but for now just wants to relax and enjoy being ‘on the outside’.  As always, thanks for all your messages and kind words, and you are welcome to continue leaving messages in the guestbook here.

Ian and his mum have made a formal complaint to the hospital today, and Ian wrote the following about his experience last night around 10pm:

Yes 5 years ago I was discharged from Salford Hope hospital. It was quite a ordeal the last part of my recover in the hospital. I would say this is where things went wrong, as you can read in my complaint.

The first thing I did when I left?

My mortgage adviser (Billie) came to my flat with the papers to sign. She was amazing and honestly without her persistence, I most likely would have lost my great apartment at Islington Wharf.

Then I slept and disappeared down to my parents place for a week!

Of course my thank you  and thank you 2 posts capture my state/thoughts of amazement living through something most don’t. No need to do a bad version of timehop anymore.

I’ll be celebrating with friends and family this weekend… Thank you everybody! These two tweets really got me…

Oh and I had a totally surprise to see my my email I sent (I forgot many things around that time) to the UK Wired after seeing their top 100 UK people earlier in the year.

5 years ago, The best Hello world message

While on the mend, I finally wrote my first blog to the world via dictation to my family. I remember saying the words with tears in my eyes. Of course it had to be Hello World, as there was nothing more fitting. The joke about hospital food was my injection of humour, although I have to say the hospital kitchen/restaurant really looked after me while I was there. I was given quite plain food but they kept checking about my allergies all the time. Actually far more than the doctors (as you will see in the next week)

It was great being able to talk again although I still have the trach scar, which will never go away now. I couldn’t explain how much the cards and comments meant to me and my family. I was kind of overwhelmed to know I had touched so many peoples lives and they in turned felt it was worth reaching back.

I was looking forward to moving out of ICU because this about the time when I started really getting better really fast. It was like my body was just repairing its self at a rate the hospital had never seen before. Amazing when you consider the life expectancy of people who have bleed on the brain

If subarachnoid hemorrhage from aneurysm, about 50% die within the first few days in hospital. If intracranial bleed, with/without stroke, the death rate within year one approaches 60%. Figures have remained constant for years.

I am one of the very few lucky ones and believe me don’t I know it, and there is no way I will forget it


 

[Message below was dictated by Ian this evening, no internet connection in hospital]

Ian says:

‘Hello world!  Thank you very much for taking the time to find out how I am doing.  I am doing okay.  I am still in hospital, but making a positive recovery.  Thank you to everybody who has written to me and my family and thanks for writing such amazing things.

The trach tube is out and I can speak again.  The feeding tube is also out.  I had solid food for the first time yesterday–it was horrible!  Of course it was hospital food.

Thank you for all the messages to my family.  I’m on the way to recovery.’

[Ian is due to be moved out of ICU and on to the ward as soon as a bed becomes available.]


Ian is continuing to do well and they are hoping to move him out of ICU and on to the ward soon (possibly this weekend).  He was a bit tired today and slept more, but he did spend most of yesterday out of bed and sitting up.

Ian’s flatmate Tim brought his laptop in for him, but there is not a wireless connection to use so Ian will not be online yet.

Unfortunately Ian missed some visitors today because he was sleeping.  For anyone else who is visiting, please be aware you might not get to see him if he is tired, but we do appreciate you coming to visit!

They hope to put some sort of valve into the trach tube that will make it possible for Ian to speak, but I am not sure when they’ll do this.


At the moment Ian is still in the ICU.  They had thought they were going to move him to the H.D. unit, but there wasn’t a bed available, so for now the plan is for him to stay in ICU until he is ready to move to the ward.

Ian is ready to have visitors now, but in ICU this is limited to two people at a time.  If you want to come visit, please leave a message in the guestbook letting us know what day and time you plan to come (and please leave a contact number in case we need to reach you).  Visiting hours are from 1pm-9pm daily.  They are quite strict about what can be brought into the ICU due to infection control.

Ian still cannot talk due to the trach tube so it can be difficult to communicate with him.  He is finding it frustrating, but appreciates visitors coming as he is getting bored.

5 years ago, while I learned to speak again

Ward at Alpha Hospital

Its the June 2nd and its about the time I could barely talk (due to a trach) but my memory was less hazy and I can remember much more. My sister tried to create a communication board, so I could communicate without saying the word. It was pretty frustrating and too be fair i did tell her. I did feel bad about it, as she really trying to help. I remember writing, this is stupid and there has to be a better way… Luckily I didn’t need to wait long before I could talk again.

Ross and Carly came and saw me a few times and certainly helped with the healing process, by making me laugh and cough a lot. I think I remember Adrian seeing me at one point too, he gave me the printed information on Google IO 2010 and the much talked about Google TV.

This about the time when I started going a little stir crazy, as it was ICU, you were not allowed to plug anything into the wall.  My saving grace was my old kindle full with ebooks which I meant to read at some point. I also had enough of the woman next to me with her kicking action to get attention. I must have read about 10 or so books while I was in ICU, unfortunately lights out was 8pm and I didn’t have the paperwhite kindle at the time.

My parents did offer to bring my laptop but I originally said no (believe it or not!). They did bring my pacemaker which I had a hard time re-learning in the first hour but gave rise to a number of mixes later.

Not being able to get out of bed was a real pain, even when I could actually stand. The nurses wouldn’t let me go to the toilet alone and it wasn’t till I pretty much pleaded with a male night nurse to please let me use the normal toilet so I could have some privacy. I finally was happy again. Privacy is something while going to the loo is something I certainly like and the doctors did wonder if my body was operating correctly.

Hospital food is pretty bad but try having complan as your main supply of food, by this point I only had to survive a day or two on it before than it was via the drip in my nose. Food via a drip was weird and interesting especially when you are fully aware of whats actually happening.

The last thing I certainly do remember is the injections of  Anticoagulants better known as Warfarin. It was either have it in the arm or in the stomach. Don’t ask me why remember I hadn’t had hypontherapy yet, but I decided the stomach was best because I couldn’t move it and have it scratch and theres quite a bit of fatty tissue… It was painful but honestly it wasn’t as bad as in the arm. Having every day got me slightly use to it but any chance I could avoid it, I did. Unfortunately it would only work for a short while before they would hunt me down for another fix!

Mum and Dad kept writing blog posts on carringbridge thanks to Sarah and Sharon.


 

Ian had a very good day today!  He was able to stand for the nurses and was out of bed sitting in a chair for most of the day.  He was smiling a lot and laughing at jokes (which is helping to clear his chest).His breathing is continuing to improve and we hope the trach tube will be removed soon so he’ll be able to speak.

Hi everyone,Ian is progressing well.  He is breathing with very little help now.  They are thinking of transferring him out from ICU to a High Dependency Unit tomorrow.

Ian’s dad, sister and I have been back in Manchester with him since yesterday afternoon.The trach tube had to be resited and Ian is still having some ventilation through that just until his breathing improves.  They are reducing use of it and he is mostly breathing on his own.Ian’s sister has been reading him messages from the guestbook which are much appreciated.  However, at the moment we would still like visitors to be limited to family.  Ian is having ups and downs in his recovery, but on the whole is improving.  We want to make sure he rests and does not get frustrated with not being able to speak (this is temporary due to the trach tube).   He is communicating with us by blinking, nodding and occasionally writing, and he does understand everything that is going on.

Ian’s ventilator was removed again this morning.  To avoid having the ventilator back in, he has had a tracheotomy to help him breathe.  This is just a temporary measure until his breathing is stabilised.  The drain has been removed from his head, so now it is just the feeding tube in his nose.He indicated he was in pain due to having the tracheotomy, so he has had some medication to help with that.I have travelled to Bristol this evening, but will drive back to Manchester with Ian’s dad on Saturday morning.  Ian’s sister will also be back up to see him on Saturday.More cards arrived for Ian today and they are all being stuck up to the wall near his bed.  Thanks to everyone for all the get well messages.

5 years ago… my BBC colleagues wrote

@jas's picture of Herbkim

In my last post I wanted to include this picture of Herb Kim talking about me at Thinking Digital 2010. Still not heard what he actually said (could have been slagging me off or something *joke*) but I’m thankful for what he did do, as I was due to close down BBC Backstage on stage.

It of course never happened till much later of course.

Looking at the work/BBC angle was quite interesting. I have always said my work, personal and play lives are intermixed, and I like/prefer it that way. What happened while I was gaining consciousness says it all…

I saw this blog a long while later after I came out of hospital. I hadn’t realised the open and close battle (best word I can think of) which was kind of happening.

My parents once they received the call from Adrian came straight up to be with me. But my dad kept returning to Bristol for a house move was being finalised. So my mum reached out to Sarah (ex-wife) who recently moved near Manchester. She helped setup the carringbridge site after using it with her brother when he had fallen off something in 2009. Sarah was so supportive and contacted all of my old friends she still had emails for to tell them what had happened.

While this was happening Adrian, Tim and others were trying to keep things quiet by only telling people that needed to know. To be fair I would have done the same and they had no idea about Sarah and my mum spreading the word. The hodge also setup a form to collect responses from friends which was lovely and I thank him for doing so…

but this was trumped by the Carringbridge site Sarah and my parents setup.

I gather looking at the Twitter responses, there was a lot of wonder and doubt about what had happened. With information circulating from my mum and Sarah. I guess it became clear that the BBC needed to say something more official than tweets. I gather this isn’t normal but hey nothing about me and what happened is business as usual.

Adrian/Ant wrote…

This is just to let you know that unfortunately Ian Forrester, Senior Development Producer of BBC Backstage was taken ill last week and is now recuperating in Hope Hospital in Salford.

At the moment he is in a serious but stable condition and is being well cared for by the staff at Hope and his family.

For those who want to pass on their messages the Message for Ian Google form is here.

[Edit 04/06/10] Now that Ian’s family have set up the Caring Bridge site we’re recommending that people wanting to drop him a line use that channel instead.

Flowers aren’t allowed in ICU, but cards are, and can be sent to:

Ian Forrester
c/o Intensive Care Unit
Salford Royal NHS Foundation Trust
Stott Avenue
Salford
M6 8HD

We will keep you updated when we hear anything more but until then we hope that you can have Ian in your thoughts and let his other close friends know.

Dr Adrian Woolard

[In Ian’s hopefully short absence I’ll be looking after this blog- Ant Miller]

Preparing for allergic troubles in Japan

Allergy pictures

I previously wrote thinking about going to Japan…

I’m expecting at least one allergic reaction and the chaos which will come from not being able to commutate what’s happened.

Because of this, I’m prepared with multiple ways to communicate my multiple allergies.

  1. I have printed allergy cards written in Japanese and English from this site.
  2. I have the same cards on my paper white Kindle
  3. I have images with a red sign indicating this might be a problem for each type of food I’m allergic to

Its not perfect but I also will have a stack of antihistamines and my inhalers to give me time to get somewhere and puke my guts up in private, without my throat closing up. I’m hoping a trip to JR Tōkyō General Hospital will be avoided but if so I got the details.

If things go really wrong, I know to dial 119 and try and shout Tasukete – 助けて  …if I can.

 

Coma hallucinations and dreams

030423-N-6967M-090

Its almost 4 years since mybrushwithdeath. And about this time is when I tend to remember how lucky I am and of course remember what happened during that whole period. As I say in the TEDxManchester2 Talk, that whole period is pretty much blank but I do kind of remember some of the dreams I had.

From Mindhacks,

Intensive Care Medicine has published a wonderfully written and vivid account from a teenager who spent time brain injured and hallucinating in an intensive care unit.

The writer describes how he was admitted to intensive care at the age of 15 after suffering a head injury and had intense and bizarre hallucinations which are, as we know now, surprisingly common in critical care patients.

Have to agree, when I was in ICU, I had some crazy dreams and hallucinations. The weird part is looking back on what I can remember, some parts I starting to question they were actually real. I won’t talk about my dreams because they were disturbing and slightly worrying.

But a couple weird things which I assume were hallucinations include thinking how super clean the hospital was, in my head a cleaner would clean every hour regardless of the time or day. Somewhere along the line, I also thought the hospital was owned by Google (I assume the Google IO and Google Health must have been  more than just playing on my mind)

I remember having a real conversation about USB/HDMI power and the maximum load with Tim at some point? Heaven knows why…

I knew when something really nasty was going to happen. I could always hear the same alarm going off. It was a signal for the monsters to appear, for the centipede to attack, for bombs to be dropped, I would be sacrificed…I was very afraid.

I guess the scary part looking back is the blend from reality to mild hallucinations. I wasn’t seeing stuff coming out the wall or anything like that but I certainly had some odd thoughts about the world cup based on my curtain which surrounded my bed in ICU (a few weeks before it had even started). Maybe I was picking up on something being talked about or something?

Its interesting to hear how common hallucinations are in ICU, I assumed it was just the high powered drugs.

One year on from my brush with death

Get well cards from 2010

It seems only yesterday when I was totally stressed out about the closure of BBC Backstage, trying to help Future Everything, buying my first flat on my own and goodness knows what else…

I assume this time last year is about the time Adrian got the call saying I didn’t have mengentis, instead I had a massive bleed on the brain and they were going to operate straight away, could he contact my parents.

It still makes me very sad that I put everyone through everything but then again I really wasn’t to know. The bleed was caused by having high blood pressure and although my size doesn’t help, its also in my family genes. Both my mum and dad have high blood pressure and to be honest I’d never really thought to ask them about it. Ever since, I’ve asked them all types of questions…

In my flat, I have had all the cards I received during my time in hospital up. It reminds me what happened and how I need to move forward. My parents would rather I had taken them down but I did say I would keep them up for a year then put them away for safe keeping. This is exactly why I’m writing this post I guess.

I know I’m one of the luckiest people on this planet. To survive a bleed on the brain (Angiogram) is one thing but to be able to walk away with little permanent damage is just something else altogether. I’m not one for religion but as my parents say, god must have been looking down on me that day.

Get well cards from 2010

The blow by blow

Over the next week the story of last year becomes a lot clearer in part due to my caringbridge site/blog, which was setup by my ex-wife Sarah, who at the time I was not on speaking terms with at all.

Ian had been feeling very unwell, and his flatmate and his boss convinced him to go to the hospital to get checked out. We were called on Monday 17th May and told Ian was in hospital. Originally they suspected meningitis. However, all we know at the moment is that he had a bleed on his brain. He had surgery that day to put a drain in and has been heavily sedated in the ICU at Salford Royal (aka Hope Hospital).

It all felt like a lot longer, it almost felt like I was in hospital months, but I guess thats the powerful drugs effecting my judgment and memory. I assume looking at the dates I was only in ICU for about 2 weeks.

I do remember this moment

I spent most of the afternoon and evening with Ian today. They have taken him off the medication that was keeping him asleep and his condition is fair. He’s opened his eyes and is able to communicate with me by nodding. He is still on the ventilator but he is starting to breathe naturally. They want to keep the ventilator in for the moment in case he isn’t responding properly.

He had tears in his eyes while I was reading all the get well messages to him. So far he will only open his eyes when I ask him to, but he will not do it for the nurses.

I could hear my mum calling my name… And I woke up in a strange place mainly of white. My mum, dad and sister were standing over me. My mum asked do I know where I am? I shook my head and she said hospital. They read out a few messages I had gotten and I fell a sleep with tears in my eyes.

The next day (Saturday)… I remember slightly more.

Ian wanted to know what happened as he cannot remember falling ill; his sister has explained it to him. He then wanted to know what the doctors said so I’ve told him about having the bleed on his brain. He was listening and nodding to say he understood.

By Monday my mum certainly knew me very well because she wrote about my recovery, she did say to me later in the year that she knew I wasn’t going to be physically disabled because my legs and arms kept moving now and then while I was under…

I still feel very confident that Ian is going to make a full recovery. Today he smiled and squeezed my hand, and he laughed when we told him a joke. He knows where he is and recognises his family.

He is still quite tired and drowsy, but I am reading him your get well messages when he is awake enough to listen. Alvin and I had no idea how well known Ian is until we saw the messages coming from all over the world.

Yes I certainly remember trying to stay awake and learn more about what was going on around me but struggling to stay awake even during guest visiting hours.

I am staying at Ian’s flat in Manchester and am pleased that I have figured out how to turn on his television!

Good for my mum… I kind of forgot how alien it must have been for her, shes so use to just turning on the TV and sound coming out. While I had it setup so all the sound on the TV is muted and comes out to the cinema amp instead. Luckily I changed the Sherwood amp to the Onyko amp sometime before otherwise it would have been impossible to work out.

Tuesday, and I’m wondering about Google IO 2010 and was in tears to hear about what Jeremy Keith did for me

I held up some of his cards and messages for him to read. Ian wrote on a piece of paper asking for an article about Google, and one had been sent to him so he got to read it (thanks to the sender!).

The doctors are hoping to to take him off the ventilator again tomorrow and see how his breathing is doing.

On Wednesday Ant/Adrian posted this blog post on the Backstage blog. While Thursday…

Ian’s ventilator was removed again this morning. To avoid having the ventilator back in, he has had a tracheotomy to help him breathe. This is just a temporary measure until his breathing is stabilised. The drain has been removed from his head, so now it is just the feeding tube in his nose.

I remember the tracheotomy, in actual fact I’ve still a year later got the scar from where the hole in my throat was. The Feeding tube in my nose was very strange. I remember when the nurses would change the feeding stuff to something sweeter and my nose would almost tingle as it slowly got pumped down the back of my nose.

By that weekend (last weekend of May)… I think Ross and Carly came up to see me and my mum wrote this.

Ian’s dad, sister and I have been back in Manchester with him since yesterday afternoon.

The trach tube had to be resited and Ian is still having some ventilation through that just until his breathing improves. They are reducing use of it and he is mostly breathing on his own.

Ian’s sister has been reading him messages from the guestbook which are much appreciated. However, at the moment we would still like visitors to be limited to family. Ian is having ups and downs in his recovery, but on the whole is improving. We want to make sure he rests and does not get frustrated with not being able to speak (this is temporary due to the trach tube). He is communicating with us by blinking, nodding and occasionally writing, and he does understand everything that is going on.

The messages and cards were overwhelming… They really helped me. I remember thinking I can’t believe the amount of peoples lives I’ve touched. Not being able to speak was a nightmare… my sister (bless her) came up with a system for communicating but what she missed was the fact it was based on speaking language and so required far too much effort to make it useful. My frustration was clear but I was able to somewhat laugh with Ross and Carly.

I’ll leave the walk down memory lane there for now… but its worth poping along to Thank you part 1 and Thank you part 2 which cover my thoughts and thank you’s when I left Hospital.

Time to pack away the cards

Life goes on

Now one year on, my life has totally changed around. I’m doing a lot less but also going deeper in certain areas. I’ve decided to leave the open data movement to its own momentum. I’m now full of creative ideas which I keep writing down in Evernote for future use. Some of those ideas are to do with the BBC and some to do with other aspects of my life like djing. I’m also less likely to hold on to them, which fits nicely with my need to use less brain cycles.

I’m living much more of my life publicly, trying to hold back requires effort and brain cycles so unless there’s a very good reason, I tend to share it. I’m also less guarded with information about myself, heck I’ll pretty much tell anyone about my experience with the bleed.

I also have a total new appreciation of our brains and the system which keeps it ticking over. I’ve of course taken advantage of mine to trick it into thinking giving blood and injections are not as bad as they should/could be via hypnosis. Also a better understanding of the need to stay fit, healthy and have a very positive outlook. I really hate to see life being thrown away, even more so than before.

Generally my brush with death has changed me in many positive ways and I never want to end up back where I was. Although I’m thinking about popping back into the hospital to see some of the nurses to see if the changes I complained about have actually happened or not… But thats for another blog post later in June.

Its certainly time to stop the #mybrushwithdeath thread. Archive and move on but never ever forget…

The pulse of a nation mix – Hospital mix

The pulse of a nation mix by cubicgarden

I had a listen to all of my mixes I recorded while in Hospital, and this is certainly the best mix of them all.

This one is certainly the best sounding of the bunch which includes the the amazing recover mix, the outta of hope mix and of course the pulse of a nation mix. Its a good length too at almost a hour long. The mixing isn’t perfect but its good enough for a listen. The choice of tunes is also good, a nice upbeat selection, I must have had a good day the day I recorded this mix. As always enjoy it… oh an you can directly download this mix using this link.

  1. By your side (martin roth remix) – the thrillseekers feat gina do
  2. Strange bends (kyau vs albert) – Sebastian Sand
  3. Grooveline (matt darey) – Blockster
  4. dark side of the moon (marc van linden remix) – Ernesto vs Bastian
  5. Intution (martin roth remix) – Marninx pres ecco
  6. the truth (david west remix) – Headstrong feat Tiff Lacey
  7. Circa Forever (R.E.mix) – Rapid eye
  8. The wave (svenson & gielen remix) – cosmic gate
  9. a new dawn (virtual vault remix) – steve forte rio
  10. So much – Vince Nysse
  11. Ultracurve – cosmic gate

One of the mixes while I was in Hospital – outta of hope mix

The outta of hope mix by cubicgarden

I had a listen to most of my mixes I recorded while in Hospital, and there some good stuff there. Its going to take a while to recover and make them decent for sharing because sometimes I had the cross fader in the wrong position which is a shame or forgot to do something equally silly. Anyway here’s a nice short one to kick us off. As always enjoy…

  1. Above the sky – Airwave
  2. Cafe del Mar (Marco V remix) – Energy 52
  3. Are you fine – Kyan vs Albert
  4. Sincere (pulser remix) – Firewall
  5. Language (santiago nino dub tech mix) – Hammer and Bennett
  6. Shadow World – Thomas Brozwaer
  7. Lately (Riley & durrant mix) – Airbiscuit
  8. She wants him – Moussa Clarke & Terrafunka
  9. Into Something – Richard durand
  10. The Blizzard (Monogato’s Filth Remix) – Kalopsia
  11. Gamesmaster (matt darey 1999 remix) – Lost Tribe

Ebay unfair to those in a Coma?

While I was in Hospital in a Coma, I dropped the ball on quite a few things including a couple of Ebay things I was selling. So I find out that the person I was selling a computer too didn’t get the computer, actually it was still in my room. But I had already cashed the Paypal transfer a while ago. So I had not sent the computer but I was going to, I bought a box for it and everything to go in the post, but had not gone through with the actual post part. Then that weekend the bleed on the brain happened and I was in hospital for 4 weeks.

This wouldn’t be a problem if the didn’t tarnish my perfect 100% reputation with a negative comment for something I had no control over. I’m not saying he was in the wrong, as far as he was concerned I had bagged the money and not answered any of my emails since. I guess I seemed like a scammer and he did the right thing asking ebay to return his money.

The problem I have is since returning to the real world, its not possible to appeal against the decision. Even with all the best intentions, nothing. I’ve tried contacting the buyer and now I’m looking for the ebay email address to appeal the decision. If I could just get through to someone, I could show them the caring bridge site which would also prove what I’m saying is the truth, Heck I even have a sick note if it goes that far.

Its not so much about the money, I’m happy to give the guy back his money, its about my reputation, 100% to 85.7%.

Here’s how it went from there end.

  • 05 Jun, 2010 at 14:48 eBay Customer Support has refunded the buyer and the case is closed. You must now reimburse eBay for this refund.
  • 05 Jun, 2010 at 14:45 The buyer has escalated the case to eBay Customer Support.
  • 04 Jun, 2010 at 06:18 You should have responded to the buyer.
  • 25 May, 2010 at 06:18 The buyer opened a case: Item not received

I finally found a email to contact ebay to contest the case.

A letter to the hospital

My ex-wife rewrote my rant about the Hospital into something official sounding. I think you will agree its much better that my efforts. It sounds kind of weird my ex-wife helping me out like this but shes been excellent the last few weeks helping out where ever she can. So we’ve really made up and who knows we may actually be friends following this. Its a shame it took this to get us to talk but its a positive which has come out of this whole experience. I even met her little son the other day which is slighly scary because I didn’t know quite what to expect.

Anyway, here’s the letter we’re using for the complaint to the hospital (I’ve been told not to put the name of the hospital, just in case they are checking the internet for complaints or something) If you’ve been paying attention, you will know which hospital it is…

Following my verbal complaint at my discharge on 17 June 2010, I am putting my concerns in writing so as to be clear about the matters I believe need attention and/or investigation.

1. Lack of information to family members in ICU

My family was unhappy with the amount of communication during my stay in ICU. Some nurses would come along and do things but not tell my family what they were doing or why. My parents received next to no information about what had happened to me or what my prognosis was. In one instance, my mother was treated to an inappropriate lecture about hospital pay instead of getting an update on my condition. They were not encouraged to ask questions and generally felt uncomfortable approaching some of the staff. The consultant was never available and my family ended up having to book time with him several days in advance just to be able to speak to him. They (and I) feel more should have been done to make sure they understood what was happening.

2. Problems with ward management

After I left ICU, I was moved twice within two days which was very unsettling. It seems that no one knew quite where to put me, so the first ward I went to proved to be unsuitable, and in the ANU I was with people who were pre-surgery while I was recovering. Maybe there isn’t really a suitable ward for my situation, but I would have thought it made more sense for me to be with other people who are recovering from surgery (oppose to a medical ward). I also did not receive any sort of ward orientation and was not advised until several days into my stay that I was permitted to leave the ward.

One particular problem with my ward was another patient who needed constant care and attention and didn’t receive it from the staff. As a patient, I should not have to look after other patients, but I felt obligated to help as the patient next to me was constantly trying to get out of bed (risking a fall), trying to pull his tubes out, and asking me ‘when are we going?’ On most days, I had to call the nurse to deal with him several times, sometimes every five minutes, to stop him from hurting himself. I found this very stressful and certainly not what I needed with my already high blood pressure.

3. Missing medication

The most serious complaint I have about my time at the hospital is that I was not given my medication, though it was signed off in the chart that I’d received it. On 16th June the chart was signed in the morning, but I am certain I did not have the pills. There was one pill that was very bitter, and I have to be awake to take it, so I am absolutely positive it was not given that day. I am also certain that there were other days I did not get my pills. On the afternoon of 16th June, I told a nurse I hadn’t had my medication. She looked at my chart, saw that it had been initialled, and dismissed my allegation with no further investigation. The ward sister was told, seemed unconcerned, and did nothing. When the night nurse came on shift, I also told him I hadn’t received my medication, and fortunately he believed me. He opened the medication box and found that my blood pressure medication pill packet was empty. This begs the question, how many doses did I miss? Why did the morning nurse sign that I had my medication when I didn’t? Why didn’t the person who used the last pill arrange for more to be sent from the pharmacy? Why didn’t the afternoon nurse and ward manager investigate my allegation immediately? If they dismissed my allegation because they thought I was having memory problems (which I wasn’t), why didn’t they do something to prove to me that I was wrong (which, as it turns out, I wasn’t)? Without those tablets, I was at serious risk of a relapse. I am thoroughly disgusted that whilst I was at a vulnerable point in my recovery, the hospital’s medication management procedures allowed me to go for days without essential medication. This is serious medical negligence and I will expect to be informed of the disciplinary proceedings that surely will arise from this matter.

4. Lack of care/attention to special patient needs

I have a serious needle phobia which I made everyone aware of. When I’ve had hospital treatment for other conditions (including an operation needing anaesthetic), they were very accommodating as far as helping with alternatives to injections (i.e. using gas to put me to sleep before any IV was started). It was written in my chart that I am terrified of needles and should be approached with care. Until I was well enough to protest, I was given heparin injections in my stomach. I was told this was very important to prevent blood clots, but when I said I didn’t want injections this was taken as though I’d said I didn’t want treatment. I was willing to take alternative treatments, but as discussed below, my doctor was never available to ask about possible alternatives.

5. Lack of communication and attention by the doctor in charge of my case

After leaving ICU on 07/06/2010, I only saw my doctor once. The other patients on my ward saw their doctors on a daily basis and were told what was happening with their care. On the one occasion a doctor did see me, I still wasn’t told what was happening. After social services assessed me as fit to go home, I had to wait for 3 days to be discharged, ultimately by a different doctor because mine was never available. When I complained about this after my discharge, my doctor who we (me and my mum) had never seen admitted he hadn’t even realised I was still in hospital; he said he thought I’d self-discharged. Then he stated he had been ‘following’ my case, but had no answer when I asked how that was possible when he didn’t even know where I was. Basically, for three days I was taking up a bed that someone else could have used because my doctor didn’t know where I was and the ward staff didn’t seem to be able to communicate this to him, despite the fact that he was in the same building. I had been left in the ward to hopefully get better.

6. Lack of respect for patients and their visitors

Visiting hours on my ward were restricted to 2.5 hours per day, and that time is very precious for patients and their visitors. On one occasion whilst my mother was visiting, a nurse interrupted us and insisted that I put on a nebuliser mask. The nebuliser mask makes it impossible to speak to your loved ones, and there was no particular reason it had to be done at that exact time. It was very rude, and for the sake of an hour this nurse could have waited until visiting hours were over.

Additionally, I felt ignored most of the time I spent on the ward. The nurses were friendly to the other patients and addressed all of them by name, but for some reason I was left out. Perhaps it was the fact that no one seemed to know why I was there or what was supposed to be happening with my care due to my doctor forgetting about me. I was quite surprised when I was told by one nurse that she didn’t even know what had happened to me. I thought that was essential bit of information when a nurse is going to be caring for a patient.

In summary, the time I spent at the hospital was very disappointing for me and my family. The overall lack of communication meant I stayed in hospital much longer than I should have and that caused a lot of distress. With all the people that were supposedly contacting the doctor on my behalf (PALS, the ward manager, nursing staff), I do not understand how my doctor could ‘forget’ his patient is languishing on a ward. I have huge concerns over how medications are managed and I am appalled that when I brought the matter of my missing medication to the nurse’s and ward manager’s attention, I was not taken seriously. For a more non-communicative patient, mistakes like that could be a matter of life or death. I certainly feel safer out of that ward where I know that my medication is my responsibility and I do not have to depend on negligent medical professionals to get what I need.

I do expect a thorough investigation of these issues, particularly with regard to the missing medication and my doctor’s neglect of my case. I look forward to hearing what steps you will be taking to ensure my experiences are not repeated with other patients.

Thank you part 2

Thank you to the whole of the ICU ward including Nicole, Sarah and Shelly who looked after me while I was in ICU (say my parents because I was obviously sleeping) They explained to my parents exactly what was going on and with such compassion plus they sympathize with there position unlike nurses later on the stroke ward. I was out of it but you made a dent in my parents memory that they remember you all. But I would be wrong to just rule out all the nurses on the stroke ward, there were some good apples mixed in with the bad ones. Ginger was great, there was also a bunch of male nurses which were excellent and ever so witty. I will never forget the male nurse who ran half way to somewhere to get my pills for the last night. He was totally out of breath by the time he returned. Oh and how could I forget the dinner ladies, good fun and always got a hi from them.

Thanks to everyone who wrote to me on Facebook, you all know how much I hate facebook but these were worthy of a mention and a thanks.

Claire Phillips (sorry for the scare, hope it didn’t ruin your holiday in vegas), Waheed Rehman (we need to go to a real imax soon, no better place that manchester), Matt Pass (sorry for not being in touch, my parents moved from Fishponds to whirl near weston), Tim Cowlishaw, Jennifer O’Grady (I don’t think I’ll be going for a drink anytime soon sorry), Louise Ferguson, Frank Wales, Imran Ali (Not quite marked all as read and delete but almost), Tasha Fear (thanks!), Gia Milinovich, the mythical dot (good to hear from you), Marissa Mulvena (newcastle will have to wait sorry), Tim Cowlishaw, Anders Lewis, Vikki Leaney, Ivan Pope, Kate Norman, Tom Leitch, Sarah Khan-Wuttka (you have two children now?), deena denaro-bickerstaffe, eileen jones, sheila farrell, ryan alexander, Ashley Angail,, Tim dobson (again), dave crossland, deborah cawkwell, Joanna Rodriguez, Herb Kim, and Stephanie Kit Kat Lease, Maz Hardey (yes theres more that lost but lost was extremely good TV, better that the average american stuff), Roberto Beto, Ann Michael,
Of course I forgot to look at my private twitter messages, so thanks to @Fidothe, @leeky, @imran (didn’t know you did a shout out to me at ignite, thanks! would have preferred to have been there), @kidhelios, @mike_lott, @vickyjo (thanks for the hugs) @sheiliaellen (again and thanks for visiting me). Those on Identica also get a mention too. @rajmarshall, @methoddan.
Thanks to everyone who sent me a card incluing Amy, Claire,  Paul & Ann, Birch and Suzie (all the way from the states) Paul Chessbrough and the telegraph dev team, Chris Tasha and family, Antie Melrose, Antie Kathleen, Uncle danny, Cousin Patrick. My old Neighbours in Lodge Causeway, Kellie Hancock, Waheed, Most of Worldservice new media, Suw and Kevin, Herm B + Tom (thanks for the magazine), the rest of World service new new media, Interaction 05 (the last class I taught before leaving Ravensbourne), everyone at Clearleft, dave crossland with the biggest card of them all, Jo and family, david marks (thanks for the pages), Bryan and Michaela (not seen you guys in ages hope your well), Rain, Beryl + Lockley + debbie + tony + amanda + lewis, Social media cafe manchester, deslyn and mike. Suw & Kevin,  Waheed, Kelly hancock, my old neighbours from lodge causeway, Antie Melrose + Patrick + Uncle danny + antie Kathleen, Paul + Ann Ross’s parents, Birch + Suzie (all the way from america believe it or not), Chris + Tasha, + family, Waheed
And I came home today to find even more cards that my parents kept for me because it would have caused a problem having so many cards at the hospital.
Carl (germany), Sarah + Steve, lucy briges, Emily, Anty Halline + family, melrose + patick,, megan + billy (home made card from the kids awwwww), bert + joen, harry + tiffany (thanks for the snippits of news, really helped in ICU), Adam + Helen, dj adams (@qmacro), Rachael Neagle + Neil, Oli (@cdddimate) (nice to hear you bashing out some trance), Marissa + @herbkim, rachel, Samantha, the project north team at work, tim + funmi + andre, + Otis (Otis? Really another little one?). Andrew + Kerry from geekup, Glyn + Sheila from London, BBC r&d, Nicky Smyth + Sal (work mates), Adia & Amari (cousin), Ross + Carley + Megan + Billy (how many more times shall I thank them).
Most of the people I know at BBC Manchester including derek, andras, Toni, Bruce, Binh, Kev, Nik, Paul, Matt, Andy, Leanne, Alice, Angus, Tony, Minesy, Heather, Paul (and more), Alphonsa, Andras.  Laura, Jon Paul and Geeks of the world! (can’t work out who this one came from but its a touching end to the long list).
Told you my memory isn’t so great, I almost forgot the caring bridge site,  which my ex-wife sarah helped setup with help from my sister and mother (the mystery blogger, wasn’t she good?)
Trish Veale (Hanrahan), Rachael Neagle, Mike Lott (Singapore), Kellie Thatcher, Mo McRoberts, Pauline Randall, carl rauth (germany), Maz Hardey, Funmi Alexander (how many kids do you have now), Antie Millicent (thank the lord, Jamaica), Waheed Rehman, Samantha Chadwick (nice story about thick and easy), Bruce Weir (lost was good and you know it), Vanessa Westwood, Rachael Neagle (facebook still sucks), Jason Legget, Glen Ford, Steve J, Sheila Thomson (thanks for visiting me again), Jay Caines-Gooby (a what plot?), John Dodds, Bahi P (yep I really put my personally in those posts), Lucas Gramajo (Toronto), Trish Veale (Hanrahan), Deena DeNaro-Bickerstaffe, Carley & Ross (again), Stephen Knights (6k gosh really!), Kellie Thatcher, Herb Kim, Andy Goodwin, Brian Butterworth, Dave Brooks, Kat Pattison (still hope to make that box), Melinda & Cristiano (my newsreader certainly kept me busy for a while), Hayley Showering, Sarah blow & Steve, Rick Curran, Ben Metcalfe, Sarah Wuttke (baby zac?), Peter Mills, Deena DeNaro-Bickerstaffe, Peter Schübel, Chilon Forrester (new york), Cristiano & Melinda, Dan Lynch, vanessa westwood, Sandra Haines (antie), Kellie Thatcher, Brendan Quinn, Nigel Crawley, Mark Tanner, Vikki Leaney (you got married), Simon Alexander, Justin Souter, Lisa Connolly (would you have come to manchester?), Dave Brooks (New Haven, CT, USA), Lola White (Jamaica),  Melrose forrester (antie), Harry Lo (Pepsi is better, Hong Kong SAR China), Dan Oliver (.net magazine), Jack Murray (enjoyed media 2020), Sabina Bhugun, Rachael Neagle (more cryptic status to come), Dave Mee, Chi-chi Ekweozor, Nisha Ray, richard Tank (sorry to hear about your dad), carl rauth (Switzerland), Hemmy Cho, Ross Michael, Ant Miller, Philip Trippenbach, Matt Locke, Bruce Weir, Rowan de Pomerai (the iphone put me in hospital), Marc Price, Sarah Blow, Samantha Chadwick, Julian Tait, Pukul Rana, Rachael Turner, Pauline Randall, Delia Stearnes, Bahi P, Herb Kim, Thelma Jones (racine, USA, sarahs mum), Jon Jacob, Farooq Ansari, David Marks, Harold Cattron, and Sheila Farrell.
If I missed you in either thank you’s, I’m very sorry I only checked a few places and couldn’t put down all the text messages, emails and voicemails I got over the last few weeks. The cards were slightly special because the nurses and my parents was able to read them out to me when I was sleeping.
I want everyone to know this is a very serious condition but I’m doing alright now. I do have memory lost which is really ignoying but I honestly its not that bad (only forget the rarest things like ex-girlfriends names – whoops!). It could have been a hell of a lot worst.
People have been asking me could it happen again? No honestly it can’t. Why do I know? It was all down to the amount of work and the fact that I have High Blood Pressure but never did anything about it. Hence the bleed in the brain which was the brain releasing some pressure. However this manfest its self with a bleed on the brain which is deeply worrying. So as I said I could have been a veggie with a ventilator for company but I got away lightly with some memory lost and a slightly weak body. The body will get stronger and my brain will fill in the things I can’t remember. Generally I think I got away with murder. People still can’t believe the time to recovery from waking up to being ready to leave (about a week or so) I was in hospital for about 3 weeks before that. A very short period of time going by what the nurses was saying to my parents.
So I’m one of the lucky ones and I know it. Thanks to everyone and I really mean it… I might not have been here if it wasn’t for the great thinking of a few people and the contuning support of people around me like the ones mentioned above and in part 1.
People always ask me what I remember, so here’s what I remember
The only thing I really remember about that time was waking up on Saturday when the cleaner was banging on the door trying to get in on Saturday morning to clean the flat. I woke up and thought Tim will wake up and let her in because I got a headache and couldn’t be frankly be bothered to get up and let her in. That was the last thing I remember, I don’t remember anything else till I woke up in hospital with my parents and sister standing over me. My mums voice willing me to open my eyes. I don’t remember going for a meal or anything like what happened in my bathroom let alone my bedroom. I don’t remember going for a meal or eating hob nobs or anything, the whole time from the UK elections to a week ago is blank. I’m surprised the iphone 4 came out today, before this all happened gizmodo just landed a scoop of the year finding a iphone4 in a bar
Thank you to you all…from the very bottom of my heart….