Imperial War Museum, Duxford

Yesterday we spent the afternoon at the Imperial War Museum (Duxford) (on our way to pick up an E-bay item that Kevin bought). It was just at the side of the M11 and the motorway was clear so it was a good journey.  The plan had been that if the weather was good we would go to Butterfly World in Hertfordshire. If the forecast was for rain we would go to Duxford.  The forecast was for torrential rain, hail, thunder and floods, so armed in cold weather clothes and waterproofs, we arrived for lunch. It was blistering hot, open airfield space with the sahara sun.  Parking was plentiful and hassle free. Lunch for me was a sausage roll (not your average tasteless meat in a soggy wrapping) – really good and the equivalent of at least 3 sausages. After a week’s holiday of every meal coming with chips I settled for a giant plate of baked beans instead.  So we started in hanger 1 and worked our way round the mile long road of hangers.

American Plane

Super accessible

It was immediately apparent that accessibility had been built into the design of hanger one ‘Air space’ and not as an after thought. Hanger 1  told the history of flight, how aircraft fly, what they are made from and the jobs they do (with lots of planes of varying types in the hanger). There was braille descriptions, signed videos, lots of hands on and models of planes to touch. I could see and get around everything at wheelchair height, doors were electric opening, modern toilets including mirror image layout (and toilets in virtually every hanger or building) and lovely smooth floors to glide along.

Nothing beats whizzing down a really long ramp made with a smooth finish – and the American hanger (above) had a delightful curvy ramp all the way down to the lower level with a glass rail panel. I don’t think the ramp is the star attraction… but hey ho, it pressed my buttons.

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I’m quite partial to helicopters that are painted to look like Tigers :-). My head was about floor level of this Sea King -it’s huge!

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After Duxford

We left Duxford and headed off to pick up Kevin’s new purchase which was about another hours drive away. Just as we picked it up the heavens opened and thunder banged. At about 6.45 we set of back home to Kent. We stopped for about an hour at the Cambridge Services and ate Mexican listening to Edge of Glory.  Thanks to the M25 cut down to one lane and traffic at a standstill for Dartford Crossing bridge repairs. Some lunatic thought it was a good idea to get traffic from 5 lanes to merge into 1 – resulting in us not going anywhere for about an hour. We had also forgot the mains lead to plug my vent into the car so I was on battery power wondering if it was going to run out. That was a bit worrying. We got home at midnight – strange night in all!

Always an expedition

Our trips away don’t happen that often but recently we went to Chichester for a weekend.

Travelling lightly – impossible!

Whether it is one night or ten – there is always a lot to take. For three nights at a Travel Lodge I took the following:

Normal stuff

  • 6 items of clothing.
  • electric toothbrush,
  • toothpaste,
  • soap,
  • flannel
  • my own pillow
  • hairdryer / brush
  • Contact lens case/fluid.
  • Poncho (+outdoor clothing).
  • Phone and charger.

This would have fitted into a small hold-all and we could have packed in minutes, jumped in the car and drove off with hub’s additions of some clothes etc.

I can’t do that… it takes all afternoon for my husband to get things together, bring disability equipment out of the loft and load up the car. I find people don’t understand this in ‘holiday’ conversations. It’s not like we can forget anything neither. You might be able to go to reception and buy a toothbrush if you forgot it but if you forget a vent hose you’d have to drive back home again. It’s this added pressure that you just can’t convey to people – or they don’t appreciate. Similarly making sure you bring it all back home!

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Disability ‘stuff’ includes:

  • Manual wheelchair
  • Shower hose extension.
  • Battery charger for my chair
  • 2 large foam cushions to prop up parts of me
  • Decking plank and wood blocks to keep my feet level on the toilet or under the sink
  • Foam mattress topper
  • Wedge pillow for my head (left side)
  • Second pillow for the other side of my head/cheek to protect the side of my face.
  • Blanket for between my knees and several towels and blankets to support me in bed
  • Ventilator
  • Ventilator mains lead, night time face mask, tubes and circuitry.
  • Ventilator mask ‘slugs’ and 2x padding that goes around the mask.
  • Nasal spray to keep my nose clear to breathe,
  • Adhesive plaster/tape to put over my face and nose to protect it from mask sores (and scissors to cut it).
  • Bottle of fairy liquid to clean my mask cuff and hand sanitiser liquid to clean the mask shell.
  • Shoe horn (personal hygiene item)
  • Andrex (personal hygiene item)
  • Change of clothes (personal hygiene item)
  • Wheelchair bits like footplates I only use when out
  • Radar Key
  • Allen Key to adjust bits of my chair if needed
  • Puncture repair kit

Sometimes we take more stuff with us depending on how accessible a place is e.g. this year we will take my mobile hoist for our main holiday.

Holidays are hard work but if you don’t put in the effort you never see anywhere new and that would be even worse.

Product reviews – now on my formal blog

Reviews of ‘disability’ products I have tried or products that I’ve used to aim to solve a particular difficulty.

All reviews are my own opinions and I am not affiliated with or endorsing any one of these products or companies.

Health Service coughs up

Today I went here. No, not to see some sexy firemen – this is the new sleep centre for the Royal Brompton in London.

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The train assistance didn’t quite work out so well as one train didn’t have an accessible carriage. Then on the one home the accessible carriage had its doors jammed stuck so there was no access to that part. I sat by the doors.

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What happened in between the two journeys was brilliant. I can’t cough as my muscles are too weak. A machine exists – a cough assist – which help you cough and get rid of the gunk that sits in your throat. It can save you going into hospital or choking especially if you get a bug or chest infection. They are like gold dust so I didn’t think they’d give me one as they cost about 4K. I had a good assessment and actually came home with one! Amazing as I’ve told my docs I’ve been choking for years and never even got an assessment. I am very very happy!

Blood gas check up

LancetYesterday I went for my respiratory check up. I commute, with my husband, into London by Train and Taxi to get to the Royal Brompton Hospital – my nearest specialist place.  My PA kindly offered to drop us off as it was freezing cold and had been snowing a good few inches the day before. Anyway, wrapped up in a multitude of blankets and clothing layers we actually got there early. The London Taxi from Victoria Train Station was SO bumpy and rickety that I felt sick! That wasn’t so pleasant.

We spent about three hours – mostly sitting in a corridor with umpteen other people waiting for the same three things – bloods, quick blow into a tube to see how much air is in your lungs and a 5-10 minute chat with a doctor :-/ .

There is nothing to do other than stare at people’s wheelchairs and compare their spec to your own. I didn’t see any whizzy features I wanted to pinch though. My consultant person is cheery and good looking – two qualities you want in a good doc and the lady who stabbed my ear with a lancet to get a blood sample was also cheery and pleasant.

Getting my blood gases check is the most important thing because when you can’t breathe properly because of weak muscles, you can’t breath out carbon dioxide – and it builds up and poisons you (and would kill you). Amongst other things, they check the level of CO2 which should be kept normal with proper vent use (i don’t know what I scored but they said it was ok).

They offer two options – taking blood from the wrist or ear. I usually go for wrist but it can be very painful because they can stick the syringe straight into a nerve. After asking around about what it was like getting your ear done – I decided to give it a try. They put a cream on your ear that brings up the blood (it pulsates in your ear). Then they stick a lancet into your ear lobe to cut it so it bleeds – and they catch some blood and suck it up for testing. So, besides the stab which hurt a lot less then when I stab myself with a craft knife or sewing needle, it was better than my wrist. Some people bleed for hours – but within minutes mine was fine so that was a good result.

I find it somewhat weird that the first thing my specialist asked me was what would happen if I didn’t use my vent. Duh – I’d die. Not quite sure what he was getting at?

The doc didn’t seem too concerned with me choking at night and trying to breath through bubbles of snot (mucous if you want to dress it up). I was hoping he’d say ‘let’s get you a cough assist machine’ which is what I think I need. But he didn’t. I did however get a referral to a specialist physio to measure my inability to cough and get out of the pickle of drowning in snot on a daily basis. So back to London at some point to show them how I can’t cough *sigh.  I don’t have to see him for a year now instead of every six months – so that’s good.

So that was that … my PA picked us up and I spent the evening wrapped up in my electric blanket in front of the TV. I was shattered.

Words and Pictures Day 1

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It’s the end of the week and I’m flagging. Day five of getting up at 7ish and I could sleep all day. Night time care stuff means we rarely go to bed before midnight – and then the nights are up and down.

I’m recruiting a new PA so I can stay in bed – I can get up when I’m ready then rather than relying on hubs before he leaves for work. He’ll get a bit longer in the morning to do his own things too.

I’m hoping it will give me more energy to have better days and nights. Less pain and being more alert is rather appealing. Having PAs help at the right time is life saving – life giving. Just having someone sit with me doesn’t seem a lot – doesn’t seem essential. Fancy someone getting paid good money to do nothing!

People will see it worthy to raise money or pay taxes for machines and hospital equipment to keep people alive but a sit in social care service wouldn’t attract the same interest!

The fact is, it’s as essential as the vent that keeps me alive. Shame that these services are the first to go in the cutbacks. I’m having to cut one PAs salary to fund this essential service from another. That’s not fair either – but if I can’t live otherwise what option is left?

Sleepless in Seattle

Ok so technically I should call this post Sleepless in London – or even Night of the Living Dead would more accurately reflect the experience that is the Sleep Study. Then again, at times it was comical… so here goes…

Quick catchup.

This was the first one since I started using a ventilator (BIPAP) machine to breathe for me at night. The machine blows air into me via a face mask. My lungs are that of an athlete – but the mechanics have failed (muscles defunct).

Why overnight monitoring?

You know when you wake up and can’t remember where you are or what day of the week it is?

Add in:

  • an intense fear and certainty that a burglar is somewhere in the house yet at the same time your head is telling you that is ridiculous
  • feeling drugged like you had one bottle of wine too many – chilled but about to slump into a coma
  • saying things that make perfect sense – but only to you

all making an appearance during the night. One things for sure – this seemed suspiciously abnormal.

Then I’d huff and puff all day feeling like each breathe wasn’t worth the effort , pop on my vent and reach the same drunken mind altering state within the hour.

It’s the same state people strive for who are turned on by PVC, whips and strangulation…. apparently *cough

So … on with the post (I’ll come back to sex later on).

Connecting up

We arrived with the kitchen sink and were shown our room. My sister in law was in a new hospital with her little one – and posted a picture of this huge plush room with en-suite. This is what we got in comparison!!

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That’s hubs changing the channel as people had nicked the remote :-/ and yes the room is that yellow and only 3 foot longer than the bed.

Access for wheelchair users

Well obviously changing the TV channel is out (and we were there from 3.30 until 10.30 ish the next day) and there was no level entry shower facilities in the ward area (the one in the accessible bathroom at the end of the corridor was broken). I was told the sleep study area had an accessible bathroom next to the room but it was small and had no grab rails if you needed them. Not that it mattered because once they connect you up at 8 (or 9 if you smile nicely) then you can’t disconnect so everyone has to use a commode (painful, awkward and my dignity trickled away in one piddly audible moment 😦 ).

How many nurses does it take to demonstrate a call button

A smiley nurse popped her head in and demonstrated the call button aeroplane style. The big red one for the alarm and the little one right under it for the light and you can move it around like so… (demonstrates lifting and putting down so said item – twice)… Oh my life, yawn.

A bit later another one wanders in ‘this is the…’ we nodded politely and saw the whole routine again. Thank you very much that’s great (not that I can press it or that it would reach the floor where hubs ended up sleeping).

Nurse number three got a a less than smily welcome as she launched into ‘this is the…’ finishing with ‘oh let me start again, ‘my name’s …’.

Noooooooooo….

Scrabble anyone

I think she was bored as she struck up a conversation of the merits of the 4s and her mirror screen protector. I also suspect she was sponsored by Zynga?

Still, we couldn’t talk iPhones all night. The doc had blood to suck out of me and I had a bed to get into with more buttons than an Apollo rocket.

It took about 2 hours to ‘get into bed’ and I departed for planet Gaga.

Meanwhile TOSCA (below) stored the data for another doc to have a quick squint at in the morning. This is a clip on your ear, heated to Sahara Dessert at midday temperatures probe that measures Oxygen, Carbon Dioxide and your pulse rate. A good figure is 98 for O2 and about 6 for C02.

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With a patient screaming, my air bed mattress buzzing with the aggression of a killer bee and general freaky noises – sleep consisted of about 40 winks.

On the plus side I was fairly pain free in my lovely squishy bed.

Boy did I feel like S*#t in the morning. Hubs too. TOSCA gave up recording at 7.30 am but I stuck with him for an hour to see what he would say once I’d got out of bed. I wanted to experiment with different breathing techniques and observe the figures.

I googled the manual and read up about the device – because I could.

The verdict

I am breathing too much! People with mechanical failure retain CO2 – especially at night and during dream sleep when the body totally goes floppy. The vent keeps them normal by keeping good breathes going all night.

However, my vent was taking me past normal – and making it really low. It’s like when you hyperventilate but without the panic (or the quick shallow breath in/long breath out breathing that some find enhances sex – whichever you relate to more 😉 )

My Swiss cheesed brain now thinks a low of 2-3 is normal during the day and makes me feel ill.

So what now?

I’ve got to use different vent settings – but the effect makes me feel like I’m being strangled so this is going to take time and mind control not to freak out.

So with advice on settings we trundled home via a cab that smelt like a kennel and a train that oozed happy staff (no really – train was so good, top marks).

… one more thing

If we chatted on Twitter you will appreciate why the food wouldn’t have made the next round of Masterchef. Cue the Monica scowl.

The holy grail of BIPAP

A huge, painful, problem for anyone using a full face mask at night is nose sores. Pressure sores on the bridge of your nose are excruciatingly painful. In fact it’s the sort of pain where even a faint breeze can feel like a nail being banged into your nose.

Henceforth came the quest that every user begins – the search for the Holy Grail of masks.

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It’s hard to believe that such a soft piece of silicone from the edge of a cuff, barely touching your nose bridge, could cause a gaping hole! I still can’t get my head around it. Each breath of my vent gives the faintest of touches from the seal. A breath every 6 seconds though soon adds up I suppose.

New Look

Nothing to do with clothes – I refer, my friends, to what has become my new look – a whopping red sore that every eye is drawn to should they glimpse me face on. I’ve only had a few weeks in the last 7 months where I haven’t looked like I’ve been on the gin!

I’m going to share some of the things I’ve found that has helped (or not) as time goes on 🙂