An "interesting" journey to have Lung Function Tests.

On Friday this week I had an appointment at the Royal Free Hospital, in Hampstead, to have my annual Lung Function Tests.

 

As my appointment was at 10.15 am, and I needed to be ready to be picked up by the hospital transport 2 hours before hand, my carer came nice and early to get me up, showered and dressed.  After taking my pills and having breakfast I was ready to go by 8.00 am.

 

Sadly the transport didn't turn up until 9.00 am.  There is no explanation why I need to be ready 2 hours before my appointment time, and then the transport can turn up so late, its just something that I have to accept.  However as I know that the journey will take between 1.5 and 2 hours I already know that I'll be late.

 

Then the fun started.

 

The vehicle that they had sent was a small van, just big enough to accommodate my wheelchair.  The problem with these is that being tall, my head is on the ceiling, which means every bump in the road means I bang my head.

 

The driver then wasn't going to strap my wheelchair down.  If you have ever watched films of the NASA "vomit comet" flights, where they take trainee astronauts up in a plane and dive steeply to simulate a zero gravity environment, you will have an idea of how a wheelchair moves around in a vehicle, unless it is tied down.  As the vehicle corners the chair just slides, until it hits sometime solid to stop its progress.  You have no control over your movement or how you are going to stop.

 

Having convinced him that I needed to be strapped down, and ensuring that he had done so properly, I then had to tell him to put a seat belt on me.

 

All this had taken about 15 minutes before we got going.

 

The driver, who I had never seen before, then proceeded to drive whilst trying to set his sat-nav.

 

I could see the sat-nav and watch the planned journey, but I could also see that this showed the current speed restriction on the road we were travelling on, and the actual speed we were travelling at.  Almost consistently we were travelling at between 10 to 15 mph above the speed limit - even in areas with speed cameras.

 

Even with the driver's speeding, it was clear we were going to be late, so I rang the department and told them that I would be at least 30 minutes late for my appointment.

 

When we were half way down Brixton Hill, a bus pulled out in front of us, causing the driver to have to slow down rather quickly.  Buses do this all the time.  Its just a fact of driving in a major city, that there are going to be buses and that they will pull out into traffic.  In fairness, in London, they are very big and red, you can't really miss them, and should therefore be able to anticipate that this might happen.

 

However for the next mile or so, the driver of my transport, followed the bus making hand gestures out of the window, directed at the bus driver.  I'm sure that the bus driver wouldn't have even noticed but certainly wouldn't have cared.

 

Then as we got further into London, the driver stopped across a pedestrian crossing.  I'm pretty sure that he could have avoided doing it, but he sat there sniggering at the pedestrians as the had to cross the road and walk round his vehicle.

 

A bit further on we came to a give-way, and instead of stopping, he just pulled straight out in front of a van.  It was only because of the driving skill of white van man - and its not often you can say that - that there wasn't an accident.

 

Then as we were getting near the hospital, a lady had just started crossing the road, on a zebra crossing.  She hadn't just put one foot on the crossing but had both feet firmly on the crossing and was walking confidently across.  The driver, didn't even attempt to stop or slow down, but just went straight over the crossing.  If the lady had been just slightly further over, she would have been cleaned out.

 

I was relieved to finally arrive at the hospital - not just alive - but only 30 minutes late.

 

The driver then had 3 - yes that is three - attempts to park his vehicle close enough to the pavement for the ramp to reach on to the kerb.

 

I made my way to the Lung Function Department and after checking in, was seen almost straight away.

 

The tests sound fairly straight forward.  You have to breath into a machine and inhale and exhale as instructed, to test various parts of your breathing and lung function.  Some breath's are long inhalations and long exhalations, whilst others involve quick, rapid breath's.  There are others which require combinations of quick and long inhalations and exhalations.  Each test is usually repeated a number of times to ensure that they get the best result.

 

I find these test to be quite tiring and often feel very worn out after having had them.

 

The whole process took about an hour, and the results will be passed to my consultant, and hopefully be ready when I go again on Wednesday. 

 

I then make my way to the transport department to wait for a driver to take me home.  Quite quickly a driver comes to get me, and I'm relieved that it is someone I know, and not the driver from this morning.

 

We have a very uneventful journey home and I am back indoors shortly after 2.00 pm.  After a cup of tea and a sandwich, I get into my armchair for a sleep and a rest.

Routines

I expect that most of us who have myositis, or any other chronic condition, tend to live our lives by a set routine.  This is especially so as you become more affected by the condition, and this then places limitations on what you can do, and the amount of assistance you require.

 

If like me you have carers come to you - I have carers come three times a day - this pretty much sets your routine for the day.  You know that the carers will arrive at a certain time in the day, and therefore you ensure that you are ready for when they arrive.

 

Also if you have a condition which results in you suffering from fatigue, you tend to manage what you do, to ensure that you don't run out of energy - or spoons (if you don't know the "Spoons Theory", I can tell you about this some other time) - too early in the day.  You spread tasks out over the course of the day, or over a couple of days, so that they don't completely wear you out. 

 

If you know you're doing something unusual on a certain day, you tend to prepare for this by not doing as much before hand, to try to save up some energy - or spoons.  But you know that a day outside of a normal routine, will really take it out of you, and you'll spend days recovering.

 

Most days are pretty much like any other.  It makes me laugh when people ask if I'm doing anything special for Christmas.  Actually my Christmas will be pretty much like any other day - partly because I'm not a very Christmassy person - bah humbug - but mainly because if we do too much then I'll just be asleep by mid-afternoon, having worn myself out (much like the rest of the population).

 

However much you try to stick to a routine, there are always going to be the occasional days when you need to do something outside of this normal routine.  Visits to the hospital, visits by or to friends.  Although these are everyday events for most people, these changes to our routines can have a huge impact on us.

 

Occasionally there will be a week when everything comes all together.  When every day seems to be busy, and your normal routine goes out the window.

 

Well this week is one of those weeks.

 

On Monday morning I had a 10.00 am meeting with the Area Co-ordinator from the Care Agency, to conduct my annual review.  This is where we get to look at any problems I might have with my carers, and my care package, and see if there is any more services I require.

 

As any of you who are regular readers of my blog will know, over the last month or so there have been a few problems, which have resulted in me writing a letter of complaint to the Agency, and including Social Services and the Care Quality Commission.  So it was going to be an interesting meeting.

 

Now things started off badly with the lady turning up late.  This is one of my pet hates.  You agree a time for an appointment - so you should be able to turn up on time.  If you're running late, you can easily use a mobile phone to say, you're going to be late.  But there does seem to be an assumption that if you're disabled, then you've got nothing better to do than wait in, so it doesn't matter if they turn up late.

 

At least you should have the courtesy to apologise for being late - but she didn't even acknowledge the fact.

 

We then went through my care package, which is fine and doesn't need any changes.  I'm quite happy with the carers who come to me, the majority of the time, so there are no issues that need to be dealt with.

 

However, when we talked about the overall service I receive and how satisfied I am with this, she didn't seem to think that the poor service from the office - which is what my complaint was based on - needed to be documented on the forms.

 

She then had to do a "risk assessment" to see if there was any greater chance of me being a danger to myself or others, because of changes to my condition, or environment.  This hasn't changed from last year.

 

Finally, as she thought we had finished I asked here about my complaint and what was happening with it.  She said that it was being dealt with and I should hear shortly.  I pointed out that the companies own complaints procedure states that any written complaint will be acknowledged in writing 2 days after receipt, and that within 14 days a full written account of the investigation into the complaint, along with the actions and measures taken, would be sent to me.  Neither of these had been done, and accordingly the company was in breach of its own complaints procedure.  She assured me that this was an oversight and that I would get a letter by the end of this week.  (I'm not going to be holding my breath),

 

So this took about an hour.

 

In the afternoon I then had an appointment at the Diabetic Clinic at my local medical centre.  This is only 15 minutes away down the road, and I go there in my powered wheelchair.  However, Monday was a wet and miserable day, and this meant that I needed to put on extra layers to keep out the cold and rain.  I have a waterproof cover, which goes over both me and the wheelchair, and keeps both dry.  But its impossible for me to get on and off on my own, so Mum has to come down with me.

 

I am early for my appointment, but as usual the clinic is running late, so I have to wait for about 20 minutes before I'm called in.

 

About 2 weeks before my clinic appointment, I had a fasting blood test, and gave a urine sample, so they have all the results ready for the clinic.  Everything looks very good, with my long term blood sugars and fats being where they should be, and my cholesterol levels are within the right area.

 

So there is nothing much to discuss, as the tablets I am taking seem to be keeping my diabetes stable, and we make another appointment for 6 months time.

 

After a wet trip home, I'm able to get into my armchair for a bit of a rest.

 

Tuesday is my day to go to the local community centre - the Douglas Brunton Centre - where I volunteer teaching members how to use computers.  Its good fun, as the people are usually quite interesting to talk to, and its something a bit different one morning a week.

 

I get picked up about 9.00 am and get home just before 2.00 pm.

 

Usually I'd get in my armchair in the afternoon, and recover from the morning, but today Mum isn't feeling great, so I give her a break.

 

Wednesday morning I have an appointment with the Eye Clinic ay Croydon University Hospital.  I have ordered a taxi to take me - I can travel in my wheelchair in London black cabs, as they have rammed access, and as a disabled person I am entitled to a reduced fare, through a scheme called TaxiCard.

 

The taxi picks me up just after 9.30 am and we arrive at the hospital in plenty of time.  I make my way to the clinic and book in and then expect a long wait to me seen.

 

The Eye Clinic is always packed with patients and everyone always has to wait for a very long time.  I cannot ever remember being seen on time.  But it does seem to be badly organised, and a bit chaotic.

 

When I book in, the clerk has to look through all the files to find mine.  They don't appear to be in any sort of order, either alphabetical or numerical. 

 

I have been attending the Eye Clinic for about 4 years.  I have a Macular Scar on my right eye, and they are monitoring this to ensure that it doesn't get any worse.

 

An hour after my appointment time, I am called in by one of the nurses, who gives me a short eye test.  He then has to go and find a more senior nurse to come and put some eye drops in, which will dilate my pupils, before I have a scan of my eyes.

 

The other nurse comes and warns me that the drops will sting - which they don't - and puts them in.

 

I then have to wait to be called for the scan.

 

After about 15 minutes, I am called in and given the scan.  Its only a matter of sitting in a dark room with my head on a frame looking into a camera and a blue light, whilst they look at my eye.  It takes about 10 minutes to do both eyes.

 

I then have to wait to see a doctor.

 

This takes about 15 minutes before I'm called in.  The doctor reads my notes, and looks at the comments from the scan.  Then he has a little look into my eyes.  The Macular Scar is unchanged.

 

However, he says I have the early signs of a cataract in my right eye - thank you Myositis and Prednisolone - but it isn't something to be concerned about at the moment. 

 

He advises that he'll see me in a years time.

 

I leave the clinic and make my way down to the front of the hospital.  I ring for a cab to collect me and take me home.  I'm expecting a long wait, so don't rush to get outside.  I just get out of the door and the cab pulls up.

 

I get home about 12.30 pm, which is much earlier than I expected.  My vision is blurry, I have a headache and I'm knackered, so I get in my armchair and fall asleep for the afternoon.

 

This morning my carer overslept which meant she was 45 minutes late getting here.  I really appreciated that extra 45 minutes in bed.

 

Today I have nothing on, so its very much a day to recover and rest.

 

Tomorrow I have an electrician coming at about 8.30 am to put up some new light fittings, so that will be another disruption to my normal routine, with having to organise the work, talk through what needs to be done and where, and make any decisions.

 

Weeks like this aren't the norm, and usually I'd try to spread out these sort of appointments so they don't all come together, but this week has been unavoidable.  At least at the end of this week I'll know that all these things are out of the way, and I can spend a quiet weekend recovering.

Joost Van der Westhuizen

Some time ago I did a blog about Joost Van der Westhuizen and wrote about my admiration for his great rugby ability, and now his fight against Motor Neuron Disease.

Below is a link to an interview he has given recently, whilst on a trip to Wales to watch South Africa beat the Welsh at the Millenium Stadium. on Saturday.

http://www.bbc.co.uk/sport/0/rugby-union/24890861

For a man who was such a great athlete, and embodied the South African rugby spirit, to see him reduced to this is very sad.

It makes me feel very lucky.

Some more about standing and the long awaited video - Yipee!

It's been a while since I've written about my standing using the new Levo C3 stand up powered wheelchair, and at the end of last week I finally managed to get a video of me using it, so I thought I'd update you on how things are going.

 

Remarkably it's now 7 weeks today, since I took delivery of the wheelchair, and I really feel that I'm starting to make good progress and feeling the benefit of using it almost every day.

 

Levo C3 Stand Up Wheelchair - sitting

 

Levo C3 Stand Up Wheelchair - standing

 



Unless I am going out, when I use my Viper S powered wheelchair, I get my carer to assist me getting into the Levo wheelchair, after I have got up, showered, and dressed in the morning.  I then have breakfast, after which Mum helps me by putting on my trainers - which give me good support in my ankles and heels as I stand - and the puts in place the knee/leg supports and then puts the chest strap round me.

Viper S Powered Wheelchair

 



I then go and stand looking out the front window, watching the world go by.  I am usually standing somewhere between 10 and 15 minutes, but on a very good day I have stood for as long as 20 minutes.  It isn't actually hard work, standing in the chair.  I had expected that it would be hard on the muscles in the legs and that these would hurt, but actually this isn't the case.  When I first started standing the legs did feel weak and after 10 minutes standing, would feel a bit shaky, but this has now gone.

 

What actually limits the amount of time I can stand is the discomfort in the soles of my feet.  I wasn't expecting that, but suspect that not having stood for 5 years, the soles of my feet need toughening up to get them used to having weight put through them.

 

After having stood, I then tend to transfer back to my Viper S wheelchair, as this is more comfortable to sit in - or I'm more used to this chair and it feels more comfortable - and it is easier to manoeuvre round the house.

 

You might be wondering if its worth having if I'm only using for this short time every day. 

 

As I can build up more tolerance to standing, I will be able to stand for longer, and eventually if I can get to a point where I can do a couple of stands of reasonable length, each morning, that will have even more benefit.

 

Below is a video of me standing using the Levo C3 stand up powered wheelchair.  Sorry that the lighting isn't the best, and the cupboard behind me doesn't allow you the best view of the chair actually raising up and down, but hopefully you'll get a good idea of how it works.

 

I have also muted the background noise - as the washing machine had just reached it's spin cycle and all you could hear was this whizzing round - and have therefore put on a song by Saint Etienne - Who Do You Think You Are - which I hope you'll enjoy.

 

 



You will note that when I am standing I am not getting up completely straight.  Part of this is to ease the pressure on my feet, and therefore extend the length of time I am standing.  Also I need to stretch the tendons in my legs to get them used to standing straighter - which is something they won't be used to from all the sitting down in the wheelchair.  I try to get a little straighter each time I stand.

 

The final reason is one of confidence.  As I get more upright, I feel as if I am on the edge of tipping forward.  Although I have the chest strap which will prevent this from happening, and that the chair itself is extremely stable, I still need to build up my confidence in this regard.  I'm sure you'll appreciate that tipping over feeling, and wanting to avoid doing something that might end in setting back my progress.

 

So what benefits have I found from standing?

 

Even in the relatively short time I've had the stand up wheelchair, I've started to notice little benefits.

 

I've written previously about being able to see the world from a different perspective, literally, and the difference that this can make.  Just simply the joy of being able to stand, is a real tangible benefit after having spent 5 years sat down.

 

Physically, I can see a difference in my legs.  They aren't swelling up as much as they used to and the skin on my legs appears to be in slightly better condition.  I've even got hairs growing back on my lower legs - which might not sound like much - but that's quite a big thing.

 

I am also feeling a bit of an improvement in my core strength - which is one of the areas that is really hard to achieve any improvement.  We are only talking about a very small improvement to my stability when I am sitting on the side of the bed first thing in the morning, but its definitely an improvement.

 

One of the issues many wheelchair users find is that their bowel movements become very irregular and constipation is often a big problem.  Although I would say that this has never been a great problem for me, there has definitely been an improvement in this direction.

 

Also it has helped to lessen the occurrence of sores on my bottom.

 

But the most noticeable benefit has been with my toes and feet.  I have Raynaud's and have always suffered with cold hands and feet.  Since being in the wheelchair, my feet have almost constantly been cold, and the changes in skin colour had become quite pronounced.  Earlier this year a friends wife was shocked to see that I had purple toes - and even more shocked when I laughed it off as being normal for me.

 

Well over the last few weeks I've really noticed that these changes in skin colour have almost completely disappeared.  I won't say my feet aren't cold but they certainly aren't as cold as they were before I started standing.

 

So that's where I am currently with standing and using my new chair.  It was quite a lot of money, but it was worth it, and I can see that the more I can use it the better the benefits will feel.

 

I'd just like to finish this blog by saying a thank you.  It was in December of last year that I saw Liz Dewar, one of the senior Physiotherapists at the National Hospital for Neurology and Neurosurgery, in Queens Square, London, during an appointment at one of the IBM research clinics.  She saw the potential benefits to me and offered me the opportunity to attend appointments with her team to explore the options to getting me standing.  After almost 4 years of being told I couldn't stand it was a breath of fresh air.

 

Liz and her team, where brilliant.  Patient, encouraging and supportive, they deserve a great deal of credit for giving me the opportunity, and for working so hard to help me achieve my goal of standing.

 

Thank you to them all!