Saturday, 30 January 2016

OT Home Visit

Having got through the assessment day with Canine Partners, I was expecting a bit of a wait for the Occupational Therapist to call to do our home visit assessment. She rang though on Thursday evening and she's coming today, at 10 o' clock. That feels very soon.

The visit is due to take around 3 hours. I don't really know what she wants to see. I'm very nervous. The main thing I'm nervous about is that in my own home is where I'm most mobile. I don't even use a stick all the time at home, only when my legs are really bad. I hope she doesn't decide that I'm not bad enough to need a dog.

I got sent another long form to fill in. I've filled in as much as I can but as usual, there are some questions that I'm not sure what to put.There are questions about perception, spacial awareness and spasms. I don't know what to put for those. My spacial awareness isn't great unless it's the only thing I'm concentrating on. I do have a tendency to walk into things, misjudge the widths of doorways, etc but I don't think that is connected with my condition. I think I'm just a little bit clumsy.

There are a lot a questions to help them care for you during the 2 week residential course. They want to know about night care, being turned in bed, help with toileting and other quite personal things. All those personal care things depend on what adaptations there are. I vary between completely dependent and completely independent, depending on the environment. At home, I shower completely independently but when we were on holiday in Wales, Neil had to come in with me and help me with everything.

It's Saturday morning, so I need to crack on with study but I'll let you know how it goes.

Sunday, 24 January 2016

All out of spoons

Spoon Theory has become quite well known as a way of explaining how people with certain illnesses or disabilities have to manage their pain, energy and wellness levels. Thankfully, although I live with the concept of it, my condition is nowhere near as bad as that of many others. For the most part, I juggle my spoons reasonably well... until somebody or something throws a spanner in the works.

As I said on Thursday, I was going down with some kind of coldy, fluey type bug. Thursday night, I was so bunged up, it took me ages to get to sleep. Then, at four in the morning, whoever was in the room above me, started banging doors, shouting, thumping around and generally being noisy until just after half past five. I did consider going up and asking them to be quiet or reporting it to reception but I didn't want to put myself in a potentially violent situation and they no longer have phones to reception in the bedrooms, so I tried to ignore it. I did eventually get a little more sleep but it was a spoon-stealing night!

When I rolled through reception for breakfast, the lady on the desk asked me whether I'd slept well. I explained about the noise, to discover that she already knew plenty about it. Apparently, the night guard had been up to intervene but then realised that the occupants of the room were, in the words of Citizen Khan, "doing tang-tang," and they are not allowed to knock and interrupt such things. She was very apologetic though and offered to refund that night's fee. I had already been thinking that I needed to leave a day early, as I was still feeling pretty rubbish, so I suggested that rather than refunding that night, could I just cancel the following night. Bless her heart! She did both! So I got the tang-tang night refunded and went home a day early. Big shout out to Premier Inn! It's the first time I've ever had a negative experience there and their response will certainly ensure my continued business.

Breakfast helped me to replace a couple of spoons, which certainly helped with the journey home. It rained almost all the way, so the car was anything but white by the time I pulled into my drive. I tried out a new route though and on this occasion, it took less spoons than the M1 usually does. I went M25, M11, A14, A1(M), M18... via a Little Chef for lunch (which was better than I remember them being).

I'm so glad I came home when I did, as I'm still quite unwell even now, hence the lack of posts. Today, I managed to help Neil get the spare bedroom finished (curtains hung, bed made) but needed an afternoon nap to recover. I'm very glad that I don't go back to work until Tuesday. Hopefully the extra day will help me to get through the week.

So, my experience of spoons this week:

  • being ill = half daily spoons allowance
  • disturbed sleep = -3 spoons
  • someone being kind = 1 spoon
  • full English breakfast = 3 spoons
  • driving in the rain = -2 spoons
  • driving on the M1 = -5 spoons
  • driving alternative route = -3 spoons
  • seeing Neil = 3 spoons
  • sleeping in own bed = 5 spoons
  • Neil's slow cooked pork (Saturday) = 5 spoons

Thursday, 21 January 2016

BETT and London traffic

Yesterday was such a busy day! I had a full breakfast at the hotel and then headed off to the BETT show. Apart from the A13 being very busy, I got to the venue without any trouble and easily got parked. The whole day was pretty full-on! I got into all the seminars that I wanted and was particularly excited to hear Professor Sugata Mitra speak about the concept of The School in the Cloud.

For those that haven't heard of him, he was working in India and did an experiment where he put a computer with Internet access into a wall, in villages with no school, and then observed how children taught themselves and each other. He's a really engaging speaker. Yesterday, he was talking about how schools of today prepare children for work places of the past. If we want a workforce with the skills needed for today and the future, we need radical change. A couple of his more controversial ideas included being able to use a mobile phone and the Internet during exams, and more self-organised learning. 

I also attended various talks on Further Education, which feels a bit weird to me. I'm still naturally drawn towards primary discussions and resources. I have to keep reminding myself that those days have gone. There has been a lot of talk about apprenticeships, engaging with learners and employers and about the importance of learners creating their personal branding towards employment.

Today, I haven't been very well at all. Yesterday evening, my brother David came over and joined me for dinner, which was great but then when I went back to my room, I started with a really aggressive migraine. This morning, I still had the headache and I felt a bit coldy but I had a Lemsip and pressed on. 

I went in a little bit later in the hope of quieter traffic. As I joined the A13 slip road, I was a bit shocked to see stationary traffic. We didn't move for about half an hour and nothing came past in the opposite direction. It was obvious there had been an accident. I eventually found out that the air ambulance had attended and the whole road was closed. It's a shame they couldn't have closed the slip roads though, instead of letting people join the chaos. Anyway, by the time I got there, I just went straight in - no queuing.

Many companies plan major announcements to coincide with BETT. This year Microsoft have announced that they have bought MinecraftEdu and are changing it and releasing it with a new pricing structure. I was rather concerned because we've just bought it for Family Learning and the new pricing just wouldn't work for us. I spoke to them though, and we can continue using what we have bought and don't have to buy the new version. 

Today, I survived until about 2 o' clock and then I felt so rough, I gave up and came back to the hotel. I'm reluctant to call it the flu but it's certainly a bad cold and my whole body aches. I've slept for a couple of hours and then had dinner but I still feel achy. I hope it goes away soon. I really don't fancy driving home while I feel like this.

It's the first time I've been to anything like this on my own, using a wheelchair, so I wanted to reflect a little on that too. I'm amazed that I have managed to cover such huge distances, self propelling myself, without too much difficulty. The vast majority of exhibitors have been very friendly and polite. I've had so many comments about my flashing wheels! They are a really useful talking point. The only people that have bordered on the rude side have been non-English. It's funny, I feel a bit guilty for making that observation.. but it's true. Many Chinese and Korean exhibitors haven't engaged with me at all, not even returning a smile. There are a lot of Scandinavian people at the show and they are really bad for just walking into/through you. The Americans have generally been fine, except for offering to help but not listening to the answer. Like yesterday, a lady was determined to open a door for me but my thumb was caught in the handle and she nearly wrenched my thumb off. In making these observations, I don't mean to judge or generalise but maybe there are cultural issues at play. I'm guessing that certain nationalities aren't used to seeing disabled people in this kind of context. I know from when we lived in Finland that the Nordics don't have the same rules about personal space that we have and when my head is at their elbow, bag and bum height, it's a bit of a dodging game. I've discovered that if  a loud 'excuse me please' doesn't work, just barging through and running over toes gets people to move. :)

Tuesday, 19 January 2016

Dogs, bathrooms and pillow hats

Today was my assessment day with Canine Partners. I was really nervous about it but I needn't have been. Laura, the lady who was working with me, was lovely and really made me feel at ease. She got me doing some basic tasks with several different dogs. Some were really lively but most were very calm and well behaved. There were several other members of staff there, training dogs to do various things. The atmosphere was lovely. The dogs all seemed happy and their tails were wagging whenever they were working. To them, it was all a big game!

The last dog I worked with was called Hazel. She was beautiful! Black lab puppy, gentle, with big brown eyes. Afterwards, while we were going through paperwork, she laid down next to my chair and fell asleep. I think we must have tired her out! I wish I'd thought to take a picture of her. I'd be quite happy to have a dog like her to work with.

This afternoon, I made the journey south, arriving at the hotel just after six. The room here isn't as good as last night's but I knew that before I came. Unfortunately, they don't have any wet rooms here, so I have to make do with a shower over bath. If ever you have to do the same, it's worth asking at reception for a non-slip mat. Staff don't always know that they have them, but they usually do.


My only disappointment last night was the absence of pillow hats. This has become a family tradition. Whenever we stay at a Premier Inn, we take a photo of one of us, wearing the cardboard cover from the pillows. They look rather like sailor hats. We did it once and it stuck. Last night though, there was no pillow hat to be found.

Tonight though, we're back in business! At first, I couldn't see it but it was hiding under the duvet.


Monday, 18 January 2016

Accessible hotel rooms

Well that's the first leg of the journey done. I've just had a lovely evening with my sister and her family and now I'm back in my hotel room.

I'm particularly fortunate that this hotel has wet rooms. I wish all hotels did. I know that my next one doesn't, so I'm going to enjoy tomorrow morning's shower and think appreciative thoughts.

Saturday, 16 January 2016

He will have a week off!

A week or two back, Neil went down to London for some work meetings and to see his dad, who's in hospital. I am really pleased that he is more relaxed about leaving me home alone for a few days. When we lived in a flat and we couldn't adapt it, he avoided leaving me home alone in case I had an accident or couldn't manage.

This house is much better. We're starting at the top and making it really disability-friendly, whilst hopefully looking like a smart, modern, family home, rather than an old-folks home or hospital. We've done the bathroom - converted it into a walk-in shower room, with a comfort-height toilet, beautiful rain shower and chrome grab rails. Having that done makes such a difference! I haven't had any slips, falls or jarring my back since it was finished. Hopefully within the next few weeks, the stairs and landing will be finished and we can get the stair lift installed. I'm really not great with stairs.

Unfortunately though, it'll be a while before we do the kitchen and that means I can't prepare meals independently at the moment. I'm alright with a light lunch or a bowl of cereal but not a proper meal. So before Neil went away, he made sure there were meals ready for me to reheat. He also got all the washing and ironing up to date. I appreciate that so much but I worry that even when he's going away, he's not getting a break from being a carer.

I'm hoping next week will be different! I'm going away from Monday to Saturday, leaving him home alone. I hope it will give him a week where he doesn't have to worry about me or do everything. The only downside is that he'll have to walk to work, so I hope it doesn't rain constantly.

As for me, I'm going to the Midlands for an assistance dog assessment day. I'm excited and really nervous, in equal measure. Then I'm going to London for a big education-technology conference. I'm looking forward to that so much and because he knows I'm going to be in a safe environment with food and drink available to buy and parking onsite and an accessible hotel room, he will have to just have a week off!

Saturday, 9 January 2016

A Bit Mucky

The last few times I've used my wheelchair, I've noticed that it was getting a bit mucky. There was some mud on the frame and a lot on the wheels, particularly the front castors. The footplate was really bad from all the rain we've had. So today, after my afternoon walk, I gave it a clean. It's the first time I've done this job and hindsight is a wonderful thing. I'll tell you what I did and then what I would do next time.

I got a bucket of hot soapy water (just Fairy) and a cloth and perched myself on the back ledge of the boot of the car. This is where I generally sit to dismantle my chair to put away. I kind of managed but it was way too much bending and I've got backache now. Next time, I'm going to do it on the back lawn, sitting on a waterproof travel rug.

I wiped all the metalwork down and that looks much better now. To get to the footplate and the castors, I had to put it in the boot of the car but of course, that means I had to be really careful about wringing the cloth out properly. I didn't want a car boot full of water!

The castors were really grim! Now I've cleaned them, the flashing lights are much clearer again. Also, the back wheels were quite muddy, not just on the tyres but around the rims. So I tried to give them a proper wash but it wasn't very successful because I was bending down and that hurt. Then I didn't think what I was doing and balanced it on my leg and now I've got a wet patch - lovely!

Finally, I gave the freewheel a clean, though that wasn't as bad as I expected. Then I left everything to dry off. Later, if my energy levels return, I'll check tyre pressures. Last time, I got taken by surprise and it nearly spoiled an afternoon out. That won't be happening again! Also, last time, we only did the back wheels, not the freewheel, so I'll check that too.

I think my biggest mistake was trying to do it at the wrong level. The floor would definitely be easier and less painful, as long as I can sit somewhere soft. Also, a stiff brush would be handy for doing the tyres and possibly a smaller bucket that would be lighter to carry.

Friday, 1 January 2016

Hills without help

Last week, when Neil and I went for a walk by the river, I remember thinking, "This is lovely. I wonder if I could manage this by myself." The path along the riverside is largely flat, without a camber and fairly smooth. However, the only way to get up there involves a ramp and there are two quite sizeable humps on the main path.

Well, this morning, I wanted some exercise and Neil was busy (still in bed, asleep), so I decided to give it a go... and that got me thinking about hills.

The first challenge was getting up the ramp to the riverside path. Fortunately, this challenge presents itself at the beginning of the walk, when my energy levels are at their highest. I know that I couldn't propel myself all the way up it. It's too steep and too long. I figured the best option for me was to walk very slowly, using my chair for balance and support. I can only do this if I don't have a bag over the back of my chair, as that makes it tip backwards. Anyway, I did a kind of shuffle step up to the top, stopping for a couple of rests on the way.

I've got pictures of the next hill.

You can see by where the path meets the wall, that this is a reasonable incline, but at least the ground is smooth. The biggest risk here is tipping over backwards. To counter that, I lean forward, making sure I keep my core muscles nice and tight and my back straight. Then, forget about speed or looking cool. I go nice and slowly, push by push, ensuring that I move my hands back to the start position quickly enough that I don't roll back between pushes. I might be a little mad but I also find it helpful to talk to myself and offer encouragement as I go. "Keep going... nearly there... you can do it!"



Going downhill is much easier and more fun but still needs a little forethought. Before launching myself into a glorious weeeeeeeeeeeeeee, I check that the surface doesn't have any hazards that might catch the front of my chair and hurtle me out. It's also wise to check that there are no people that you might run into. I actually stopped and waited at the top for a while to give the man with the little girl (now in the distance) some space. Then, off I went. Weeeeeeeeeeeeeeeeeeeeeee!!!


Finally, after my lovely walk/roll along the river path, I had to get back down the ramp into the park. I can walk up hills with some difficulty but down is pretty much impossible without help, so I rolled it. As you can see, this path is less smooth. Near the bottom, there are potholes that would be disastrous if hit at speed. So sadly, slow is the order of the day here. Also, I have to turn right at the bottom, which is a tight turn. Again, I don't want to tip, so this time I leaned back, right into the back of my chair (which is a really comfy position). Grip the push rims tightly and then release and grab over and over again, letting the chair slide in a controlled manner, down the hill. This is where gloves really are essential if you don't want friction burns!

So the basic ideas are:
  • check the surface before setting off (especially down hills)
  • lean forward when going uphill
  • lean back when going downhill
One final tip - if a total stranger offers you a push up the hill, just accept it and say "Thanks!"