In Dr’s we Trust?

Without really thinking, we do.  They are Dr’s, they know it all.  But putting all your faith in these special people, especially specialists, is not always a safe option.

We have been going around in circles trying to get more things sorted.  Derek’s lungs don’t appear working properly.  He gets breathless quickly, when talking, when walking, when laughing.  He is now worse than he was a year ago.

We used to walk 5.5km in an hour with no stops.  Now he walks that distance in 1 hour 20 minutes and he has to stop.

We are trying to find out why he is going down hill so have asked several medical people to investigate.

We went to a specialist Endocrinologist in June this year. One we have been to several times.   We mentioned this reduction in ability, but it was not recorded.   He spent a short time with us, discussed things, then wrote a letter to our GP.

This is an important letter as it tells Derek’s GP how he is doing currently with his health and his medication levels.

We have recently changed GP’s as our previous one has recently retired.  Therefore the new Dr needs all these specialist notes, to ensure she is treating Derek properly.

At the time of transferring, we decided to get a copy of all of Derek’s GP’s notes from his previous GP to see what had or hadn’t been noted.

What I found floored me.

We all put our faith in the medical profession getting things like medication correct..  But is that faith justified?

To put your all trust in what Specialists say (and they are supposed to be the all knowing Gods of Medicine), has again proven to be very dangerous.  Thankfully this time, we ignored what the specialist wrote, and the Dr didn’t bother reading what the specialist wrote.  Instead, the Dr asked US what medication Derek was on.

What the letter stated as Derek’s medication was  dangerously wrong.  This specialist  is the one responsible for making note of what Derek’s medication should be on a daily basis to keep him alive.

According to the latest letter to our GP (and the one that the hospital would read to confirm dosage) The letter states ….Hydrocortisone is 10 (5 at lunch, 5 at dinner)….

hc dosingThe letter should read 10mg HC in morning, 5mg at lunch and 5mg at dinner.  There is 10mg of Hydrocortisone daily missing.  It is half his daily dose to keep him alive!

If Derek took that low a dose he would not be conscious to take HC at lunch time on the 2nd day.  He takes 10mg in the morning (6am) rolls over to let it kick in, then takes another 5 before lunch time, and another 5mg at 4pm.

Derek has had blood tests done at 8am before his morning dose of HC and it was found that he had a level of  9nml/L in his system, the absolute minimum a normal person should have is 250nml/L.  It should actually be in the 500’s at that hour.  Less than that and you are probably in crisis.

Taking 5mg at lunch time, then 5 in the late afternoon would not be enough to keep him alive for more than a few of days, and those would be a major struggle to stay conscious.

Taking Hydrocortisone is not like eating extra food.  You can’t take your normal dose one day, stay in bed all day, and store it up, to use when needed another day.  It peaks at 2 hours post taking, and only lasts in the system for 4-6 hours.  Once that 4-6 hours is up you start to go down hill until you take your next dose.

Derek cannot get out of bed in the morning except to struggle to the toilet if he hasn’t taken any HC.

And the kicker is, the less HC you have in your system, the quicker you use it up as your body starts fighting to cope, so it use up what it has to function pretty quickly.

So putting on a legal document that he is only on 10mg a day when he struggles to stay out of crisis on 20mg, is a medical misadventure waiting to happen.

NEVER PUT ALL YOUR TRUST IN YOUR DR.  Always get a copy of your medical notes, and check them for accuracy.  They have a habit of not recording everything you say, interpreting it how they want so it fits the book, or just brushing it off.  Or worse, not checking their own notes, when writing to inform others of important information.

There is no excuse for getting critical details wrong when it could seriously harm someone



Frog in a Well


Did you ever go to a dance and try to slow dance on a crowded floor with the aim of just getting from one side of the hall to the other? Have you found that each time you moved in one direction, you ended up further back than when you started? You are moving, and think you are going forward, but when you look up from focusing on dancing you see that you have moved in the wrong direction?

This is what it can be like with Chronic Illness.

Derek has been trying to get his fitness up. Each time he tries, he gets sick, either a cold, general fatigue, pneumonia (this last one). It takes a long time to recover from each illness.

The problem is, he takes 1 or 2 steps forward in his fitness, and bam, he is knocked down with something. It then takes him a month to recover enough to try and get fit again. The problem is, that month has not only taken away the fitness he had achieved, but it has also wiped out another part of what little he had started with.

For example, we have recently bought him a Fitbit. It’s a fancy pedometer.  We set it so that each day Derek must do 6000 steps.

When he began, he could easily do 5000, and had to make a little effort for the last 1000. He got pneumonia 4 weeks ago. He went from doing 6000 steps daily to nothing for 3 weeks. Now he is struggling to do 4500.

You see, he is swimming against a strong current. He is not only having to start again, but he is starting a little further behind where he was. And the more he tries to get back to his 6000, the harder he has to push himself, and the more chance he has of getting sick again.

This doesn’t mean we are giving up. He is doing other things to try and improve his leg muscle tone even when he can’t get out and walk far.

I read a post by a teenager with 3 Chronic illnesses today who was talking about the fact he may not be able to do his chosen sport of boxing any more. He likened it to Muhammad Ali who, when knocked down in a fight, and everyone thought it was over for him, Ali got back up, took one punch at his opponent, and knocked the guy out. He had decided that being down for the count was not for him. Nor was it for the brave teenager.

And that is what most people with Chronic Illness do every day. Something sucker punches them, they lay there for a minute, take stock, then get back up fighting. They may not have a lot left to fight with, but sometimes it only takes one punch to win the fight.

The battle still goes on, one fight at a time.

As Derek and I dance on this dance floor of life, we dodge some things, we get blocked by others, we get pushed backwards by yet more. But eventually we WILL make it all the way across the dance floor.

 We won’t dance around the floor because even moving forward you end up right back where you started from and where’s the challenge in that. It seems a wasted effort to me.


I have had enough. I am tired, I am sick of this illness. I want OUT!

Please understand, I am not tired of my husband, I love him dearly, and wouldn’t want to be without him. Therefore I must accept this intruder into our lives, that will never leave, even when we take the welcome mat out from under his feet.

It is the Illness I am sick of. I am tired of it, I HATE it. But I am told I don’t have a right to say these things because I am not the one with it.

Actually, Yes I Am!

When I got married, I promised to love Derek, and to stay by his side in sickness and in health. And I will. But we are a partnership. When we married we put everything in OUR name. This includes this illness.

I claim it as much as Derek does, because I also live with it. Derek suffers bodily from it, but I suffer mentally from it. WE OWN IT EQUALLY.

Why am I saying this now?

Let me explain

One Friday morning Derek “crashed” about 11.00 am at work. He suddenly felt like he needed his meds. He didn’t take them, he decided to wait till his alarm went off. After all, it was only 30 minutes away.

At 11.30 it went off, but he was in the middle of something, so he doesn’t know if he took them.

30 minutes later he noticed his phone was flashing because he hadn’t recorded his meds. He said he couldn’t remember taking them, and felt “off”. The normal policy is, if you can’t remember taking your meds then take them again because even if you did take them, you probably need more. And too much won’t kill you, but not enough will.

He came home from work tired that night, but not sick. Just like had had a bad day. It got to 7.00 and I felt like I desperately needed to go to sleep. Because Derek wasn’t feeling great, we both went to bed. We also both fell asleep almost immediately.

Derek woke up Saturday with a bit of wind under his rib cage. Other than that, he felt tired, but not sick. He didn’t feel like he needed to take extra meds. We relaxed for the morning as I still wasn’t feeling great.

By the afternoon he still had the wind so we went for a walk. He considered taking extra meds, but decided that apart from this irritating wind which was causing a bit of breathlessness, he felt ok.

Sunday morning we woke and I asked him how he slept. Not good he said. He couldn’t lay on his right side, it was too painful. We decided then that we should possibly go to A&E, as now he was starting to feel more unwell (not sick, just unwell). It didn’t appear serious, it was just pain, so we felt we could take our time.

Derek went to have a shower, while I did a few things around the house. I went check how he was just as he was finishing his shower and saw him pull up in serious pain. He had reached up, and got a very sharp pain under the ribs moving up over the shoulder.

We phoned a Medical Help Line to see if we were worrying over nothing. I spoke to the nurse as by this time Derek was not feeling well at all.

The nurse asked if we had an emergency ambulance alarm. I could sense she was about to say she would call him an ambulance. We didn’t feel he was that sick so told her that we could just take him to Hospital. We actively live as close to the hospital, as the nearest Ambulance station, so it was quicker for us to drive.

We still didn’t think that Derek was that sick. He seemed a little low because of the pain, but didn’t think there was a need for extra Hydrocortisone.

We arrived at A&E at 9.49 am. We went straight to triage and spoke to the nurse.   We explained what Derek’s symptoms were, and explained that with Addison’s he could very quickly go down hill. We didn’t give Derek extra meds at this point because we didn’t want to mask his symptoms, and we felt that as soon as they spoke to him in a cubical, they would give him emergency cover.

A&E have a system (quoted from their website):

  • Triage 1: life-threatening e.g. heart attack. Treatment is immediate.
  • Triage 2: emergency e.g. chest pain, shoulder dislocation etc. We aim to treat these patients within 10 minutes.
  • Triage 3: urgent e.g. bad injuries, appendicitis etc. We aim to treat these patients within 30 minutes.
  • Triage 4: semi-urgent e.g. fractures etc. We aim to treat these patients within 60 minutes.
  • Triage 5: non-urgent e.g. minor strains or sprains which could be treated by a GP/primary healthcare organisation. We aim to treat these patients within two hours.

I will say here that what they say on their website and what is truth are completely different. When you get their they tell you they are required to make sure all people are “Treated and Streated” within 6 hours. In fact, it can take up to 3 hours just to get to see someone other than the triage nurse.

Derek presented with a life threatening medical condition, and unexplained chest pain. He was classed as Triage 3.

I let the nurse know I was not happy with this, as although he was awake, semi alert and talking, he had Addison’s and was unwell. I pointed out twice that this could turn into a crisis without notice, and was she happy having me inject him with emergency medication in front of everyone because they weren’t treating him with the correct urgency.

It didn’t make a difference. By the time we left the triage area, Derek had worsened.

After 10 minutes sitting in the waiting room Derek started going down hill. He could not keep his eyes open, he was starting to feel nauseous, he had a really bad headache, he had become sensitive to light and noise, he felt weak and was starting to lose focus of what was happening around him. Basically a number of the “signs and symptoms of an adrenal crisis”.

The Triage Nurse could see him going down hill, she even came over and asked if he wanted it slightly darker where we were sitting. He was sitting there propped up against the wall, with his legs on my knees and his eyes closed. He didn’t speak to her because of how he felt.


After what seemed a very long time (almost an hour I think) we finally got taken out the back and he had to try and repeat his symptoms. By now I was having to do most of the talking as Derek continued to go down hill.


The Dr came in a few minutes later. It was now 11.00. 1hr 10 minutes since presenting at Triage.


Derek was going down fast and still no offer or suggestion of emergency meds. I turned to Derek and said I thought he needed HC early as he could no longer focus, didn’t acknowledge properly what was going on, basically, he was crashing and was now in crisis.


I deliberately pulled his medical box out in front of the Dr and asked Derek did he want 20mg instead of the normal 5 he was due. He couldn’t decide (confusion starting to kick in). He told me later that all he could do was say yes, because anything else was too hard.  I made a drama of it to see what the Dr would do. She simply said “if you feel he needs that much, then give it to him”.


What? He needs a dam site more than that.


The Dr ordered blood work and an xray, then left. I started talking to the nurse about Adrenal Insufficiency. She admitted she had never seen anyone with it before.


Looking at Derek I could see he was now seriously in crisis and it was getting worse by the minute.  I pulled out my magic bullet. I had a letter, signed by one of the senior Emergency Dr’s at this exact hospital, stating what was required.


The letter was given to us for use outside our own Health Area. It stated what He, as an ED Doctor, would want to know in the case of an emergency.


This was now an emergency.


I gave the letter to the nurse. She stopped what she was doing (about to draw bloods). She read the letter, recognised the signature and said she would be right back, she was giving the letter to the Dr.


She came back in less than 5 minutes with 200mg HC IV.   YAY. But I shouldn’t have had to give them the letter.


The nurse then drew the bloods, Derek went for his Xray, and they did a heart trace. They also finally did his BP.


The nurse had also been given instructions to do a lay down, stand up BP to note any change.


The Xray came back clear, the heart trace came back clear, the bloods came back “normal”. I asked the Dr what the bloods actually were, she said “they were normal”. No, I wanted to know what the levels of sodium and potassium were. She said “normal”. I asked for a copy of the bloods because I knew what was normal for Derek, and what was normal for him, with Addison’s was different to that of healthy people.


She then told me his Creatinine was fine. I asked what it was because I wanted to compare it to previous Creatinine levels.


Well you could have blown me away with what she then told me. She had compared it to what it was in February 2013, and because it was similar to that, even though it was too high, she was happy because it wasn’t worse!


Feb 2013? Seriously? I asked her the number. She finally told me it was 115. This makes an eGFR (clearance in the kidneys) of 61.


I tried to tell her that that number was way off, but she wouldn’t listen to me.


In the last 18 months, his Createnine was 103-105, which gave him an eGFR of 67-69. To suddenly be down at 61 meant his kidneys were not working properly. It is most commonly caused by dehydration!


Good Practice with an Addisonian Crisis is to hydrate. Addison’s causes dehydration due to salt wasting, especially when sick.  It doesn’t matter how much water you drink, in fact drinking copious quantities of water can make you more dehydrated. He was meant to be getting fluids, but he was never given any.


She still wouldn’t listen to me. They couldn’t find a reason for him going into crisis, but were surprised at how good he looked 20 minutes after the 200 HC. When I say good, he was able to open his eyes and speak again. He still felt like crap.


They kept him in hospital over night to observe him, but were not giving him any more high dose meds. Nor did they give him fluids. He was to take 10mg HC at 5 pm, and hoped that would keep him going over night.


Day 2 at hospital and I arrived in time to meet with the Dr’s. I found several things of interest in this meeting:


  1. There WAS something on the chest. It was pneumonia (which is what we thought).
  2. He was dehydrated, even though he was drinking water. It was agreed that he SHOULD have been given fluids when he arrived at ED along with the 200mg HC IV Stat.
  3. We mentioned that last time Derek was in hospital the Dr who was training the students another day told them that the main cause of AI was TB. This Dr’s response was very immediate, and was a very curse “in 3rd world countries perhaps”. I told him that it was a Dr at that hospital that said it, he turned round and told the students in no uncertain terms that that information was incorrect.


Two of the students were told they should come back to talk to Derek because he is probably the rarest patient they will ever come across in their medical career.


You see from this that it is a shared illness. When Derek suffers, I suffer. We are in this together.


So yes, I should be allowed to say, I Hate this Disease, I hate what it is doing to US, I hate what it has robbed from US.

We will both live to fight another day.  I am now more determined than ever to get awareness of this illness out there.  to make sure others don’t have to go through this in our country.  Processes need to be put in place to make sure those with Chronic Illness get the appropriate help they need it, without having to “shout the roof down”.  We all need to be able to trust in our health system, that they will know what to do when we rock up to A & E.

What Happens When Doctor’s Don’t Know Everything.

Over the last year one thing has become very clear.  Dr’s don’t always know everything.

We recently went to our Dr to ask about the fact that Derek was not feeling great.  After being told several times that he should not be taking extra Hydrocortisone just because he was feeling fatigued, or unwell, or had a ball of gastric wind under his ribs.

Because of this, he stopped taking the extra “stress dosses” of HC and began charting his BP instead.  After 6 weeks of readings at 4 times each day, we went to the Dr.

We found that his BP will go into a clinically Hypertensive range of 154/96 with a 68 heart rate one day and clinically Hypotensive at 94/59 HR 101 the next.  Just the effort of standing, and the change of position could have his pulse rate jump by anything from 40-60bpm (up to a 90% increase), where it should only increase by 20%.

Derek had been trying to get back to a semblance of fitness, so we organised through ACC, to have a schedule of fitness sessions with his Physiotherapist.  The physio was doing the starting assessment, and found out about the problem with his BP and would not touch him without clearance from the Dr.

Armed with the readings from the previous 6 weeks we went along to the Dr to ask if he knew what was happening and why.  The first thing he did (and all kudos to him) was to admit that Derek was the one and only “Addison’s” Suffer he had ever dealt with, and didn’t know that much about Adrenal Infarction and the complications of it.

He looked at Derek’s medical records.  The Endocrinologist had written that at some point, and probably without warning, he would need his fludrocortisone increased.  So it was decided that perhaps a change of Fludro from 0.05 to 0.1mg per day could work to stabilise it.

Home we went, armed with the hopeful knowledge that it was the fludro out of sync that was probably causing the large difference in BP.

We tracked his BP for another week.  There was definitely a change in pressure and heart rate.  It continued going higher during the day, but falling further overnight.  It had also become more erratic.

OK, so 0.1 wasn’t the answer.  So go back to 0.05 but twice a day.  We had seen on various forums where others had had some success with this option.

Another week of tracking and another change in BP (or not).  Still heading upwards during the day and downwards at night and still no real pattern for week days and weekends.

We returned to the Dr with this new information.  He agreed that the extra fludro wasn’t doing anything positive so we should go back to 0.05.

He also had the results of some blood tests.  There was nothing markedly different from last time.  Kidney’s still not at a great level, everything else seemed fine.  Potassium and Sodium all comfortably within range.  Thyroid a little wonky but he has no adrenals so it is not unexpected, and not sounding an alert.

The Dr agreed that it was time to refer him back to his Endocrinologist and to a Cardiologist.  So we now wait for an appointment.

While we wait however, we don’t just sit here doing nothing…..

And the mystery continues.

Along with his BP and HR issues, he also can’t take a fright/shock or be startled now without “crashing”.

We decided we needed to get to the bottom of it.  Thinking it was BP related we went out on Saturday to go for a drive, taking the BP monitor with us.  One of two things was going to happen.  Either nothing would happen to cause him an adrenaline rush, or someone would do something to force me to break quickly and sharply, which would give Derek a fright, and I would get an adrenaline rush.

Thankfully the latter happened.  Derek was on the phone, and didn’t see the car in front of me that started to pull into another lane, and then started driving in both lanes, blocking everyone.  I had begun to speed up as we were going 20-30 km under the speed limit.  A little late, I realised he wasn’t pulling all the way over, and I braked harder than intended.  I got a little adrenaline rush as I thought for a brief instant, that I may hit him.  I felt my heart start to beat a little faster and harder.  I got a tingly feeling around my chest.  I am sure we have all felt it.

I asked Derek how he felt.  I could tell immediately that he hadn’t had an adrenaline rush.  It was obvious that it was going to be another drop.  I continued driving for about 2 minutes, until I could find somewhere safe to pull over.

We took his BP and pulse.  It was perfectly normal.  Almost TOO normal. His pulse was in the low 60’s.  Yet we could see, and he could feel, the usual symptoms.  Headache, feeling slightly ill, couldn’t keep his eyes open, felt weak, his speech went quiet, it slowed down.

We continued home (5 minutes away) and checked his BP when we drove in the drive (before he got out of the car).  It hadn’t moved.  His pulse was the same and his BP was within 2mmgh/l of the first reading for both systolic and diastolic.

We continued checking it every 10-15 minutes for an hour.  I had to wake him to do it as he went to bed and just lay there, unable to talk, or really communicate.  Still there was no change in his BP or pulse.

We are none the wiser.

So we are going to try his glucose levels next.  The problem is, we have to wait to see what happens with a fright.  Unfortunately I can’t just make a very large sudden noise and frighten him myself, as tempting as it might be.

We have done a lot of reading on the topic of the Adrenal Medulla and epinephrine/norepinephrine.  There are definite links to these hormones and stress.  There doesn’t seem to be a lot of research into what the effect of not having an abundance of these hormones does.

Adrenal medulla

The inner part of the adrenal gland is called the adrenal medulla. The adrenal medulla produces hormones called catecholamines such as adrenaline and noradrenaline. Catecholamines play a role in the response to acute or sudden severe stress, for example during life threatening event.

Catecholamines are responsible for the palpitations (racing heart), sweatiness, widening of eyes and shakiness of the hand when faced with sudden fear or other stressful situation.

This information is all over the internet.  What we can’t find is what happens when this process doesn’t happen properly and you don’t get the palpitations, sweatiness, etc with sudden fear or stress.  Does the body skip to the next section (rest and digest), or is it part of the process fails but another part kicks in, and then is not switched off because again, the Medulla has failed it’s job.

It is very hard when you have a rare condition, one that is so rare that little research has been done.

If we could find an answer to what is happening when Derek faces the sudden stress perhaps we could find a way to reduce the impact but the Dr’s don’t know and we don’t know how to get them to investigate.  In the meantime, we are having to do it ourselves.

Dr’s don’t know what to do with Derek.  If anyone has an answer please let us know.

The Holiday Continues

Day 3 dawned clear.  We drove to Hamilton.  A nice quiet, uneventful drive.

Day 4 was a quiet day.  I went for coffee and cake with my girlfriend.  Derek went out with her husband, who was building a deck for his daughters new house.  Robert is not in the best of health and so was working very slowly, making sure he didn’t injure himself.  His pace of work appeared to be the same as Derek, small amounts, resting lots.  They had done work together before, when they were both fit healthy men.  Things had changed dramatically.

Derek managed an hour of very light work in the 3 hours he spent at the house.  He stopped at morning tea time for a long break, then did a little more (holding timber and screwing in bolts).  He took an extra 5mg of HC because he could feel himself using what he had in his system.  By 1 pm, when Roberts son in law came to help out, he bought Derek home.

Derek immediately lay down and had a sleep for 2 hours.  His BP was stable, but he was extremely fatigued from the little work he had done.

His brother was due to come around and see him.  I had insisted that David come to us, as Derek did not have the energy to go and visit him.

I left Derek and his brother to talk.

One thing we have learnt in the last few months is the difference between fatigue (which he suffers from regularly) and the beginnings of a Crisis.

Saturday he decided to help Robert again.  This time he did a lot less work, and lighter work.

The kitchen was due to be finished so once it had gone in, we went round to see how things were going.

When we arrived the three boys were sitting relaxing.  They had been doing so for a while.  Derek was again looking very tired.  He took 5mg of HC again to keep himself going.

Once we had finished chatting, we took Derek home.  He needed to again just lay down and sleep.

We were due to go out to dinner that night so I insisted that Derek have a sleep.  He also took more HC at 4 so he would have the energy to go out that night.  Our table was booked for 6pm.  We were home by 9.15 and Robert and Derek both went straight to bed.

Once upon a time, when we went out with Robert and Adele, we would be out till midnight, then home to have a coffee or wine.  Adele and I were left sitting up alone.  Neither boy was able to stay up.  Derek was absolutely exhausted.

We used to live in Hamilton, so Sunday we stayed in bed late then went to catch up with some more friends.  They invited us to go to a restaurant with them for lunch.  It was great food and great company.  Derek’s main comment afterwards was how tired he was.  He found it very hard to focus on conversation and to keep himself functioning.  We got home and again he needed to lay down and sleep.  Sitting in a restaurant for lunch, not even a noisy one, was hard work.

What we had learnt over the last few days was that our social life, as it had been, was no longer.  It was like Derek had suddenly become an 80 yr old over-night.  Late out of bed, short visits, sleeps in the afternoon, to bed by 8.30 at night even with extra medication.

Adele and Robert had their daughter and son-in-law around on Sunday night for dinner.  Derek slept that afternoon, once we came home from lunch.  Dinner was set for 6.30.  That was good, because no sooner was Dinner over, Derek went to bed.  He was up till 8.00 and he could hardly keep his eyes open.

Monday of the second week was a nice sunny morning.  It was cool, but bright.  The weather was on our side.  We sat around relaxing till 9 am, then decided to just go for a walk.  It was a slow, flat walk, chatting, looking at houses.  Total distance was around 3km (nowhere near the 5-6 we try to do once a week).

As we got to the 2.5km mark Derek started burping.  This was not his normal, drink water, burp bubbles up.  This was his “I have gastric pain under my ribs and I need to release pressure” burps.  Those burps he does when he seems to be going into crisis.  He also started walking a lot slower, and reduced the amount he was talking.

He had taken his HC later than normal today, so was only 2 hours into his meds (the best time normally for him).

When we got home Derek just wanted to sit down.   He did this for 10 minutes, then took his blood pressure.

It wasn’t good.  106/72, hr of 75bpm.  He then decided, because it was so low, to do a standup bp.  It dropped to 99/68, hr was 90.  He had been using an electrolyte mixture to drink over the last few days, and had not over drunk on the walk but with the onset of reduced brain power (brain fog), gastric pain, and low BP this was definitely the start of a crisis.

We didn’t do any extra medication, he had some salty food, and more electrolyte to see what would happen.

He also went and lay down for the rest of the day.

We went out for dinner with more friends that night (again a 6 pm dinner).  It was again a home by 9.00 pm evening.

Tuesday was a day to stop, do nothing, totally relax.  We went for a coffee but the rest of the day was rest for Derek.  We had done nothing compared to what we would normally do when visiting Hamilton, but it seemed to take it’s toll on Derek.  We had the drive back to contend with the next day and I was a little worried that even though he hadn’t done anything it would be too much.

Wednesday morning was a damp day.  There was a storm brewing at home (rough gale force winds, heavy rain etc).

We decided to just drive as far as I could drive.  We stopped for lunch in Taupo, then carried on south.

We stopped again for coffee in Taihape as we didn’t stop there on the way up.

The trip home was incident free but I was getting tired.  We arrived in Levin and I decided to pull over and find a Motel for the night.  The storm was coming up country to meet us, and I was too tired to want to drive through it.  We were only 1.5 hours from home but when I was the only one driving, it was 1.5 hours too far, especially when it was going to be so wet and windy.

It turned out to be a good idea.  We picked up some groceries from the nearby supermarket, and then just relaxed in the unit.  The weather that night was very loud, windy and extremely wet.

Thursday morning we woke to rain, wind, and lots of traffic.  We drove a short distance, to another small town, and stopped for a morning drink while we waited for the business traffic to end.  Then we drove the rest of the way home (well I drove, Derek just sat there).

Again, the drive was incident free and we were home an hour later.

It was good to be home because it meant Derek could basically go to bed and get over the trip.

It was nice for him to get away and pretend (for a short time anyway) that he was “normal” although it didn’t last long because he couldn’t really do anything.  For me however, it was very much a “busman’s holiday”.

I spent most of my time making sure he didn’t overdo it, and then looking after him when he did.

Oh for want of a holiday.

The one thing we confirmed is that driving is not a good idea for Derek.  If there had been anything happen when he was driving, we could have been in serious trouble if he couldn’t pull over immediately.  This is another lesson learned.