Questions about Covid-19 and the lockdown

We're now almost four weeks into the lockdown and in some ways, it's beginning to feel like normal. We've managed to largely find ways of making life work, though nothing takes away the desire to see family and friends, and to go for a walk on the beach.

As the time ticks by, I find myself with so many questions. If you have answers for any of my questions, please feel free to comment.

The virus

Q. Why is there such a huge spectrum of symptoms from the same virus? We're told that older people and those with health conditions are more vulnerable, which seems to often be true... but then... Some very old and/or people with underlying conditions get a mild version and/or recover. Some young, healthy people die. Scientifically, there must be reasons for this. What is going on?

Q. How long does the virus live on different surfaces? We know that it can live for 3 days on most hard surfaces, hence the need for constant hand washing. Does the ground count as a hard surface? Assuming that infected droplets fall to the ground within 2m of you breathing them out, is the ground covered in the virus now? Most people will barely think about this. I know some are taking their shoes off before entering their home. That is almost impossible for me though. I have two large wheels with pushrims, two front casters and four paws that have all been in constant contact with the ground. What is the risk here? 

Lockdown

Q. Why is there so much conflicting advice? The government has issued some rules, which seem okay, except that they are a little bit vague. Police forces have all interpreted these differently and issued a mixture of official and unofficial guidance, some sensible, some not. There is a fine line between people trying to find loopholes to justify going out and those whose circumstances are not standard, trying to work out how to get through this.  It would be so much easier if there was more clarity.

Q. Has anyone thought about cars? I know this seems a strange question but I am concerned that when this is all over, we're going to all have problems with our cars. I have a diesel. Diesel cars are designed for long runs and motorway-type driving. When barely used and only doing short runs to the supermarket, they begin to object. We know this from Neil's dad. Neil had a lovely Ford Mondeo diesel. We never had any problems with it. When we changed cars, Neil's dad bought it from us, but he didn't drive much and mainly stayed local. The next time we drove that car, it was awful. I took off, one holiday, with two small children and chugged and bounced around the M25, with black smoke puffing out of the back. I have never been so scared in all my life! I really want to take my car for a longer drive every couple of weeks, to keep it healthy. Obviously the health of my car doesn't matter to anyone else, but like Liggy, it is crucial to my independence, and I am acutely aware that a breakdown situation for me is far more complicated to deal with than for most other people.

Immunity

Q. Couldn't people who are known to have had the virus and recovered, go back to normal life? I don't know many people who have had it. In Yorkshire, the numbers are thankfully still relatively low. However, in London, it would appear that many people have had it. Certainly, we know there are over 100,000 people in the country who have tested positive. Couldn't they be given some kind of ID card that allows them to go out again as normal?

I also have lots of personal questions, about how to deal with this situation as a wheelchair user, how to balance staying safe with staying healthy, how to keep Liggy safe and healthy, and about plans we had for later in the year. 

There's a lot of people on social media, being quite harsh with the message about staying at home. It's easy for those with no additional needs to follow the rules to the letter and just stay at home, and exercise from home, etc. Most people can take a variety of routes from their home to go for a 30 minute walk. I have one or two options... only one that is really safe and doable. I get that preventing the spread of Covid-19 is important but walking around a cemetery every day for a month, staring death in the face every time I leave the house... I am beginning to find that quite depressing. I'm trying to focus on the positives... on life and nature... but there's only so many squirrels and pigeons to see there. The number of fresh graves being dug is more 'in your face'. 

On a more positive note, we were doing some work in the front garden yesterday (quite rare) and got chatting (at an appropriate distance) to a neighbour. It emerged that the guy makes hand sanitiser and anti-bacterial soap. I joked that at least they should always have some. At this, he asked if we needed any, and then proceeded to give us enough to get us through the next few weeks (maybe months). For those that are under the impression that I always refuse help... you're wrong. I refuse un-needed help but when someone offers something that I really need, I say a huge thank you and gratefully accept. 

There's a reason for most things

What is he/she doing?

I often get that look - the look that says, "What is she doing?" It's usually when I'm wheeling along and make what appears to be a strange movement or even a determination to stick to my chosen path. I got that look yesterday, whilst wheeling along the promenade next to the beach.

There was a lot of thick sand on most of the path, but a narrow section that was sand free. I charted my course so that I was on concrete rather than sand as much as possible. 

Sometimes it's the camber. Camber is the way the pavement slopes to one side or the other. Sometimes it does both, creating a small section down the middle that is like the top of the mountain. Camber is effectively a sideways hill. Gravity means that I will automatically descend a hill, unless I work hard to fight against gravity. So I usually plot my path to avoid unnecessary effort.

Broken glass and dog-poo are often obstacles in my path. They aren't pleasant for anyone, but for me and for Liggy, glass is a danger and poo could end up on my gloves, wrists, clothes and then, anywhere I touch. Not nice. So I'm constantly scanning the path to avoid them.

Look for the reason

So you're walking along and a wheelchair user does something unexpected... swerves suddenly or takes a certain part of the path. Rather than silently cursing them and assuming they are stupid, look for the reason. There will almost certainly be a reason. Ask yourself what is on the path that they might be trying to avoid? What might cause them difficulty? How can you help them to navigate the path without difficulty?

The pros and cons of cruising in a wheelchair

Background
To set the scene, we have cruised before and loved it. About 10 years ago, we did a couple of cruises on the Queen Mary 2, one transatlantic and one in the Med. We found it really enjoyable and that was why we decided to try it out now that I use a wheelchair.

Why P&O?
We almost went with Cunard again, on the grounds that we love the QM2 and were sure of getting good service. However, we wanted to visit the Norwegian Fjords and preferred earlier season, before the worst of the mozzies and whilst there was still a chance of seeing the Northern Lights. P&O had an early season cruise, visiting four towns on the fjords and for what we would have paid for Cunard's inside cabin, we could have a P&O balcony. So we decided to switch and booked a week on Azura, one of P&O's bigger ships.

Embarkation
We chose to drive to the port in Southampton. It was really easy! We pulled up in a line of cars outside the terminal building. Porters helped us unload cases, which were then taken straight to the ship. When we had got ourselves sorted out, made sure we had everything we needed and were ready to go, we handed the car keys over and someone else parked the car in the car park in the blue badge area, which was helpful for our return.

Wheelchair users were fast tracked through check-in. It was very easy and we were on-board quite quickly. We had one hitch - we had accidentally been upgraded to a better cabin but it wasn't accessible and we only spotted the mistake the day before boarding. This seemed to cause some difficulties as the luggage went to the wrong place initially and our key card needed three attempts at being activated before it would work.

Accessible cabins
Our cabin was on deck 14 and had a balcony. All the accessible cabins are right next to the lifts, which is helpful. More on that later. The cabin was a very good size. Plenty of room to get a wheelchair around it and easy access onto the balcony. Neil had to move a chair out of the way but then I could access the balcony independently.

The en-suite wet room was excellent! It had rails to the left of the toilet (which suits me best) and the shower area had drainage around it, so that the whole floor didn't get wet when you had a shower. In true style, we broke the toilet...

... but they sent a chap to come and fix it pretty pronto!

Getting around the ship
They have obviously attempted to make the ship look as luxurious as possible but this has one major drawback for wheelchair users and their pushers. Thick, plush carpets are the worst for wheelchairs, especially if you have small front casters. Most of the public areas are carpeted and it became exhausting trying to get around independently. I wasn't the only one who found this difficult. It became quite a talking point amongst fellow wheelies.

The other major negative about this cruise was that the ship did not have anywhere near the right lifts to people ratio. We often had to wait ages for a lift, only to find it was already full. Because it was such a nightmare, many people got in a lift going in the wrong direction, rather than risk not getting in one at all. There were many wheelchair and mobility scooter users on board, as well as people with restricted mobility and the downright lazy. Neil made a point of delivering me to a lift and then using the stairs - because he can!

Restaurants
There are two main kinds of restaurant on board and we used both. The main restaurants were 'club dining' and 'freedom dining'. The only difference is that club dining means you always sit at the same table with the same people. We were glad we did that, because the two other couples at our table were great fun! We tended to eat here in the evenings for our main meal.

 

The other restaurants are buffet restaurants. There were two of these on deck 15, which was easier for us to get to. We had breakfast and lunch in the buffet restaurants, as well as occasional snacks. You just head in and take whatever food you fancy. My only criticism of it was that there wasn't as much variety as Cunard's buffet restaurants, but there was still enough to keep you going.

Going ashore

I suspect I found this experience more irritating than most other wheelchair users. They were well equipped with people to aid and assist you on and off the ship but they only wanted to do it their way. They didn't listen to what I wanted and tried to take over and I felt quite disempowered by their attempts to be helpful.

All four of the ports we visited had a proper dock within easy walking distance of the town/village. They had ramps to get on and off but depending on the tide, this could mean an uphill or downhill transfer. Either way, they wanted to pull your wheelchair backwards, which I positively hate! Because of this, I chose to walk off, but even then, they wanted to help me, even though they had no idea what my needs were or how they might be of most assistance. For some reason, they were very reluctant to let Neil, who knows my needs better than anyone, help me off. 

Ports of call

We visited four of the ports in the Norwegian fjords:

1. Stavanger
2. Ålesund
3. Olden
4. Bergen

I have to say, my absolute favourite was Olden, even though it was the least accessible. We took a taxi ride to the Briksdal Glacier, which we attempted to ascend, with me in my chair. The views were utterly stunning but the gravel path was steep and narrow in places. We didn't make it more than half way up but even so, it was well worth the effort.

All the ports had towns which favoured cobbles of one type or another and most places were quite hilly. I found my freewheel absolutely invaluable! I cannot imagine how we would have managed without it!

One tip for climbing steep paths: if you need a break, turn sideways to the path. That way, you won't go up or down and you can rest a while. Going down, I found it easiest to adopt a skiing approach and zig-zag from side to side. That way, you don't lose control and can always head slightly uphill as a way of slowing down.

Summing up
In general, I think cruising is a good wheelchair holiday, except for the difficulties with carpets and lifts. On this occasion, I didn't enjoy it as much as I had hoped, as I got sick. Towards the end of the Olden day, I started with an awful headache and dizziness which lasted the majority of the rest of the holiday. This was made worse by the exhaustion of pushing on carpets and in the end, I had to let Neil push me all the time.

I would do another cruise but in a few weeks, we're heading off to the Mobility Roadshow, where I will certainly be on the lookout for something to make carpets more manageable!

Leaners and lifts

Leaners

Yesterday, we had some training at work and the trainer was someone who I had never met before. I always aim to sit somewhere near the front so that when I need to escape to the toilet, I can get out of the room without disturbing anyone else. I did this yesterday in the training but the trainer positioned herself right next to me for most of the session. At first, this didn't bother me but then, as we went on, she started leaning on my wheelchair. The first time she did it, I wasn't expecting it and my arms did that drop-reflex thing that babies do when you pretend to drop them.

I can't describe the feeling of being leaned on without warning. It feels like I've suddenly lost my balance and that makes me feel rather nauseous. It also means that every movement the person makes, gets transferred through my body.

I've found that people lean less now that I don't generally have handles on my chair. It's more difficult to find a solid spot to lean on. When someone does though, they are really in close contact with me and it feels very invasive.

Lifts

I have two workplaces and one of them is on two floors and has a lift. Both buildings are fully accessible, for which I am very grateful! Yesterday though, somebody looked slightly surprised at my method of using the lift and I thought I'd share my lift tips.

Big lifts are easy - you can go in forwards, turn around and go out forwards. Small lifts can be a bit more tricky because there isn't space to turn around. I find it difficult coming out backwards because you can't negotiate obstacles, including people who are waiting. So I always reverse in so that I can come out forwards and just roll away.

I ring for the lift and while I'm waiting, I turn around and position myself so I can go straight backwards. When the lift arrives, I keep an eye over my shoulder in case there is somebody in the lift that I need to move for. If there is, it's much easier to move because I'm going forwards. When the doors open, and assuming it's clear, I reverse carefully back, being extra careful not to crack my knuckles on the sides of the door. When I get in, I put my brakes on and press the button. When I arrive at my floor, I just head straight forwards and off...

Brief History

I'll try to keep a long story very short, to explain how come I'm a part-time wheelchair user.

From Feb 2009 to Aug 2013, we lived in Oulu, a lovely city in the north of Finland. While we were there, we built a house (as you do) and while we were building, I hurt my back. Then, one day, I got a static shock off a plastic plant at work and very soon, I was in a proper pickle! I couldn't move and I had the worst pains in my left leg. Fairly soon, I lost sensation down the side of my leg and in some other places that I shouldn't mention. I realised too late that I had cauda equina syndrome (CES) and had surgery to remove a badly prolapsed disc but it was too late. Nerve damage to my leg and saddle meant some serious changes and we ended up back in the UK, trying to work out how to muddle through without going crazy.

So here's the new me. Sometimes I use a stick:

Other times I use my wheelchair:

Only that was my old wheelchair. Now I've got a super-duper new snazzy one, which I'll be using from now on and that's the one I'll be using to pass on some tips on how to get around and how to begin to feel normal again.