Still a Single Road at Times

Aside

In 2013, my second post was very short.  It was entitled “As single road at times”.

My posts back then were very short.  They were a lot about how I was feeling, how we were learning to live with this condition strange new called Primary Adrenal Insufficiency (Addison’s Disease).

It was May 2013 that I began to Blog.  In the last 6 years a lot of things have changed.  But a lot have stayed the same, we have just learned to accept them and adjust to them.

Going to live performances, etc alone has become a new normal.  I buy 2 tickets, and find someone to join me if Derek isn’t up to it.  This could be a big show, or one that our children are performing in.  Adjusting things so that we can go together has also become a “thing”.  Whether that is by buying a matinée performance ticket instead of a night time one, or making sure he has a full day of rest, including a sleep, we will do what we need to, to keep going.

In May last year Derek had a set back.  It was serious but it wasn’t obvious.  A few blood tests went haywire for no obvious reason, he became a lot more tired than normal, and other subtle differences occurred.  Despite this we carried on with life.  We continued planning our big adventure overseas.

We did the trip.  It was extremely tiring on Derek.  We did a lot of walking with him using a walking stick constantly.  We would walk, stop for coffee, walk, stop for a cold drink, walk, stop for a few photos, walk, stop for an ice cream (they make great ice cream in Europe).  You get the picture.

Derek has been more tired than usual since getting home.  It’s now 6 months since the trip and he is still a lot more tired than he was before May last year.  So we have made more adjustments.

We have learned from that trip that you have to choose the fight.  So now, if we are going out and we know it will be stressful, or very tiring on Derek, we use a wheelchair for him.    After borrowing one for an evening we knew would be too hard on him without, he finally agreed that he really did need it.  But not all the time, just for the harder events.  It means that sometimes he can go out, and we can enjoy ourselves together.   I still go out on my own because he is not up to it.  Or we cancel our plans because I don’t want to go alone.

What we thought was just residual tired from the trip appears to not be that at all.  After having more “crazy blood tests” we began to wonder.  We have now looked at his bloods for the last 12 months, what ever is wrong, has been wrong since his various blood levels went haywire in April/May last year.  But that’s ok, there is nothing we can do except keep an eye on his levels so that is what we do.

The reason we know things have not be right since May is that we keep track of all his blood tests.  We don’t need to go the Doctor to ask, we can see.  We know the symptoms, we know the signs and we can see his “normal” is changing and not for the better.

Having said that, in the words of a good friend who writes an amazing blog, he is clearly alive and will remain so.

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The Half-life of Facts

Aside

I was watching QI this morning. It’s a show where the facts are “Quite Interesting”, and generally obscure.

This morning the episode said something I was so intrigued with, that I rewound it to.
It stated that “At medical college, they usually teach that half of what medical students will learn, will be considered untrue in 10-20 years. This is termed the “half-life of facts”. That is to say that you know that half of the information will be untrue, you just don’t know which half.”

I found that to be Quite Interesting. Enough so that I decided to look the fact up, and see if there was any truth to it.

Samuel Arbesman, a mathematician at Harvard, titled his new book “The Half-life of Facts”. When talking to the Economist, he stated:

For example, in the area of medical science dealing with hepatitis and cirrhosis, two liver diseases, researchers actually measured how long it takes for half of the knowledge in these fields to be overturned. They gave a whole bunch of research papers from fifty years ago to a panel of experts and asked them which were still regarded as true and which had been refuted or no longer considered interesting. They plotted this on a graph. What they found is that there is a nice, smooth rate of decay; you can predict that every 45 years, half of this particular sort of knowledge gets outdated.”

But why am I citing an article in the Economist. Because you probably know a Dr that is still using that 50% of knowledge that is now outdated. Yet they treat you based on that knowledge.

According to Dr. Michael Gold from the Medical University of South Carolina; To paraphrase:

The half-life of medical knowledge is seven years.”

If Dr’s are not keeping up to date, they may be treating you based on what is now outdated knowledge. We have found one such Dr in the guise of the Medical Advisor of one national Advocacy group

He trained 50 years ago. Based on the half-life of facts, if he finished his training in 1970, by 2010, almost 50% of what he learned is outdated. Some of that is “knowledge” is still stating as fact which is on the groups public webiste. When we recently questioned this knowledge (which we showed with research papers to be obsolete) we were told by the Advisor “I don’t care.” (words in writing).

This attitude by the “Medical Avisor” of a major Advocacy Group for a rare condition leads to several questions.

  1. Why is he holding the position? Is it just that it has some kudos?
  2. How does his obsolete knowledge help patients today to live a better life when other Doctor use that “knowledge” to treat the patient.

Knowledge is Power, but obsolete Knowledge is DANGEROUS!

Continuing education is key to good Doctoring. And that continuing education must include reading recent research on the conditions they are treating and accepting that just because it goes against what they have been taught, doesn’t mean it is wrong, or that the Dr researching and promoting the new information is doing it “for ulterior motives”.

Next time you speak to your Dr, ask him the date of the last Research Paper was that they read? If it is before 2000, then there is a better than even chance that half that knowledge is obsolete, or will be in the next couple of years. Ask them if they have heard the term Half-life Of Facts.

Some will agree, others will get upset because they will be reminded that they are not as up to date as they should be, and others will probably refute the statement, or get angry about it. Most likely the latter, are so well past their half-life with knowledge, that they should perhaps be ignored completely.

International Travel with a Chronic Illness

leaving-on-an-aircraft

Our Next Adventure Part 1

Having managed tripping up and down the North Island of New Zealand over the last 4 years, including flying, just to see how it would go, Derek and I want to venture a little further.

The Practice

To begin our preparation for an international flight, the first thing we did was try flying to Auckland.

It required a trip to the Airport, then flying to Auckland, and driving to Hamilton.

Derek took extra medication to fly.  He took extra hydrocortisone for the drive to Hamilton from Auckland.  He then lay down for a long rest when we got to Hamilton.  He also had to rest the next day, but that is normal when we travel any kind of distance.

On the whole, the trip was good.  We listened to others’ advice, had learned what Derek could manage, and when he needed to up dose.

Flying Further

This time we decided to go to Australia.  Originally our first trip overseas was going to be to Sydney or Melbourne for a weekend for a Show. After being offered a trip to Fiji earlier this year, and the realisation that a 2 day trip would be way too hard, we thought a longer trip would be better.  Because a friend with Addison’s was heading from Hong Kong to Brisbane for medical treatment, and we had friends in Brisbane, that was going to be our destination.

We are not the first to travel with chronic illness, and we won’t be the last.  When you look around the cue of people going to the flight, you don’t know who has a chronic illness, who has spent days and weeks preparing, and who has just grabbed a ticket and headed to the airport.

I asked my cousin, who’s husband has several serious medical issues, what they do to take a trip.

Trev just sorts all his medication and I just carry it…never had any problems, I think I have only been asked once and they were good about it. I never carry hospital documents but for you guys being a first since Derek has been sick, just get your GP to write a letter out lining the diagnosis and a list of the medications on the letter. Never really had problems with insurance just be up front about it all, you may not get full cover but shop around. We don`t stress about overseas travel, there is always a hospital where you go if things don`t go to plan. Just relax and enjoy the trip. We are probably not a good example…as we are pretty relaxed about it and just roll with it…lol…isn`t that naughty, but thats just us…great place we have just come back from there.

The trip they had returned from was a trip to celebrate 25 years since “Trev” had an organ transplant.  (By the way, I am totally in favour of organ transplants.  It saves lives, including that of my cousin’s husband so please think about donating organs if the unfortunate need should arise).

Booking the ticket.

We have made the decision to travel over to Australia.

Now What?

Do we need to get permission from the Dr?

We don’t believe so because we went to see her about going to Fiji with a work trip for Derek, and she said no, because of the risk of food poisoning, the possible need for INR while there, and the short time frame.

But she said that if we wanted to travel somewhere else, like Australia or England, then yes, she would make sure we could do it.

We bought the tickets. tickets

When I booked it, I also requested a wheelchair at both ends.  That meant an alert on the ticket booking, and I had to call a number, and speak to someone.

The flight is a Partner flight, which means we are booking through one airline, but the flight is provided through another, so there was a delay while the confirmed that the wheelchair was available.

We knew from experience going places with Derek he could not stand in line long.  He gets very fatigued just waiting at the supermarket, and if there are more than 2 in a line, he has to sit while we wait.

Then there is the timing of the flight.  We could fly out at 11am.  That would mean Derek could wake up as normal, and we could take our time.  But that also meant 9-12 hours flying as we would have to fly from Wellington to Auckland, wait for 2 or more hours, then fly to Brisbane.  We would arrive at night, and it would be a very long day.

That would take more out of him.

Alternatively we could fly out from Wellington at 7am.  And then fly for 4 hours, directly to Brisbane, and land at 8am Brisbane time.

This meant a lot less travel time, but a very early morning.  Derek normally wakes at 6am, takes his first round of HC, then goes back to sleep for an hour while he waits for his meds to kick in.

This trip would mean waking him at 4am to take his first round of HC, Drive to the airport, have breakfast, then check through Customs. (hopefully we haven’t got any fines that hold us back).

So next we book an appointment with the Dr.  We need:

  • A letter for treatment protocol (if he suffers an Adrenal Crisis)
  • A letter confirming he is able to fly (because of Antiphospholipid Syndrome and risk of DVT)
  • A list of medication (it needs to be declared at every port entry and exit).
  • Any meds he may run low on before he leaves, or soon after he gets back.
  • We also need to organise an INR when we land in Australia. This is the bit we are unsure of, but the essential bit to make sure it hasn’t dropped too low while flying, which could mean a blood clot.

Then there is Travel Insurance.

Normally you just buy it when you buy your tickets.  All you need for Australia is cover so if you get waylaid, you can get a change of ticket.  But if you have extra conditions, you need to tell them about them.  Then the cost goes way up.  It went up by $150 for Derek.

But we don’t know if we have declared everything as they didn’t have the ability to declare the catastrophic event he had.  And I hadn’t declared his prostate cancer.  Oh well, looks like a phone call.

I got two quotes.  So we needed to call both companies to see how things would change.

After a long phone call to each company, Derek’s insurance was going to cost $6 extra for the prostate cancer which is in remission.

Medication

Emergency Kit

The Take Every Where Kit

We would need a list to make sure we took everything.   It currently sat in multiple areas of the house.  We also needed to make sure it all had a proper prescription labels.

When my friend Wendy travelled from Hong Kong to Australia I told her to declare, declare, declare.  If she declared everything she would be fine.

I was going to work on the same principle.  But that is not the case for Derek as he takes DHEA (Dehydroepiandrosterone).  It is classed as an anabolic steroid, and therefore restricted.  Derek needs a licence to carry it into Australia, even as a prescription medication.

And one of his other medications needs authority to carry it out of New Zealand and then back into the country.

So, we have a Dr’s note x 2, we have an emergency letter, we have an application to take his medication into Australia.

We can only carry a month’s supply in and out of New Zealand but that’s fine because we are only away 6 days.

We have to wait to hear from the Dr regarding whether he needs 1 more medication for the trip, but otherwise, we have things ticked off that we need.

Getting all the advice is key to a successful trip.  So I went seeking advice.

Travel Advice from the Experts

The Addison’s Disease Self Help Group UK has some great advice:

  • Good general advice for long distance air travel includes:
  • Remember that air travel is dehydrating so you will need to drink more fluids than usual in the air. Drink alcohol, cola drinks, coffee and tea sparingly as these dehydrate the body further. If possible, carry a large bottle of water in your hand luggage. If you forget to bring your own water, be assertive about requesting extra refreshments from the cabin crew.
  • Walk around the plane as much as possible. Try to get up out of your seat every two hours to stretch your legs and keep the blood flowing.
  • Many chemist shops now stock knee-length support socks, which can help prevent the formation of blood clots that might lead to a deep-vein thrombosis (‘stroke’).
  • Adjust your watch to the time of your destination as the flight begins, and adjust your in-flight activities to that new time zone as well. Sleep through the in-flight meals, if necessary, to get attuned to the new time zone.
  • Try to book flights that allow you to arrive at your destination in the late afternoon or early evening local time, so that you get a night’s sleep at the end of your travelling. Flights which arrive in the early morning local time will leave you tired after travelling but having to stay up all the day before you get a proper night’s sleep.

So we missed the last one.

But we are going to stay at the house of an Addisonian, so they will know that Derek will be going to have a sleep when he arrives.

So everything we can think of is ticked off.  Now to wait.

Now to wait for the actual trip.

We are excited about the trip.  We have thought of all the possible issues, and taken care of everything we can.  Derek isn’t being wrapped in bubble wrap, but we are reducing the risk as much as possible without saying, “too hard, not going.”

Next Chapter – The trip.

I am hoping this will be a very dull chapter with just the excitement of having the Sunday lunch with other addisonian’s, and enjoying visiting somewhere I have never been.  I won’t apologise if my after trip post is boring, as that would be the best trip ever.

 

 

 

Now you know it, forget it!

That is the Mantra of the Lecturers to Medical Student’s after being told about rare diseases.

I was talking to a Medical Student (just completed her 5th year) while I was with someone at the Emergency Department of a hospital recently.

We began talking about Chronic Illnesses and the fact that the families of those with Chronic Illness know more than many Dr’s about their particular condition.

She asked me about Derek’s illnesses…. “do you mind me asking what he has?”

No, I did not mind her asking. I am all for education.

I told her Antiphospholipid Syndrome. “Oh” she says, “I have heard of that”.

To say I was very surprised would be accurate.

I then asked her how she had heard about it.

Apparently, they were told about it in a Gynecology Lecture, had to learn about it in relation to pregnancy, and had a question on it in their 5th yr Exam.

They were then promptly told to forget about it, as they would never meet anyone with it.

She was not aware that Men could get it, or that it was something that can and does occur outside pregnancy!

Given that I know at least 4 women with it, and Derek has it, it isn’t that rare.

She knew nothing about the Catastrophic variant  or even that such a beast existed.

This is not the first time I have heard this about rare conditions.

Every time we query a Junior Dr or fully trained Nurse they say the same thing about Addison’s Disease/Adrenal Insufficiency. “We are told it exists, what the symptoms are, then told “but don’t worry, it is so rare you will never meet anyone with it”.  They are then shocked to hear about Derek.

If he is in hospital, the Medical Students are told to go see him, they will never meet anyone like him again!

No, they won’t. Because if they have a patient with either of Derek’s conditions, the patient will probably die before they are diagnosed.

Then there are those patients who suspect they may have a rare chronic illness is who are frequently (almost always) told “No, you can’t have that, it is too rare!”

Another useful thing all Medical Students are taught is: “if you hear hooves, look for horses, not Zebras.”

Just because a condition is rare does not mean it doesn’t exist.  It also does not mean that a patient is imagining things.

So what does this mean?  It simply means you look for Zebra’s if the Horses aren’t in the room.

How can you rely on the Medical Fraternity, when they so often get it wrong.

That is not to say they should know everything. What they should be doing is listening to their patients. Don’t rule out things just because they are Rare, or not “normally” found in that sex.

Listen carefully to your patients. If what you think is wrong comes back negative, give your patient the benefit of the doubt. Do the basic test to see if it IS  a “Zebra in the Room”. If you want to be arrogant, do the test to prove your patient wrong.

What is the worst that can happen?  The Patient is right, and you have to apologize.

Heaven forbid a Dr should find out they are not GOD!

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.

The Holiday Begins

I began my holidays on Friday 30 August.  My first day I woke up to sounds of Derek.  It wasn’t great.  He felt unwell, and was spending too much time in the bathroom.

My first day off in months and he was in bed sick.  Great, just what we wanted.  But he didn’t take extra medication.  We decided to ride the wave and see what happened.

Saturday we woke up and he felt better.  It was Derek’s first day of leave.  He tried to spend a quiet day, relaxing as much as he could.  Unfortunately because he had been sick on Friday a lot of things that I had meant to do to prepare for going away hadn’t happened because I spent most of the day looking after Derek.

Things had to get done on Saturday instead.  Sunday I did a bit more. Monday we finally got round to packing.  By then I was tired but Derek was feeling better.  He was able to help get his clothes together, and, when sitting down, was able to think about other things we needed to pack.

Day 1, Tuesday morning we woke up prepared to drive from Wellington to Taupo.  It dawned grey and cold.  A little “frost” showing hints of appearing.

We packed the car (well I did, Derek didn’t do a lot) and once the kids had left for school I made a coffee and off we went on our great adventure into the unknown.

Our first incident happened within 40 minutes.  As we were driving around a tight few corners I was going fine but slow and suddenly jerked the car to the right.  A vehicle had pulled out of a driveway on a sharp, blind corner.  It gave me a slight fright and I took quick evasive action as I thought it was going to come out in front of me.  Obviously the driver was used to leaving his driveway in reverse on this corner, as he stopped just short of being on the road proper, and waited.  My heart beat fast for a few seconds, then I calmed down

Derek however, was not expecting it, and got a fright.  Within 5 minutes he was yarning, commenting on how tired he was, and not wanting to do anything else, but rest. He couldn’t keep his eyes open.

The road after that was relatively straight, and traffic, on the whole, was well behaved.

Even so, it took him over half an hour before he started to feel better, and more awake, more able to focus (brain fog had kicked in).

We continued to Levin where, as Derek was coming right, we stopped to take a walk.  I was driving, so I needed to take brakes rather than driving long distances and Derek needed to stretch his legs.  It was nice to refresh my brain.

We then got back in the car and began part to of our journey, driving through to Taihape for a late morning tea.  Thankfully there were no more incidents.  Derek had a travel pillow behind his neck so he rested a lot, still trying to recover from the shock he received when we first left Wellington.

As I was driving I saw a cafe we had always talked about stopping at, but never had.  So I pulled in, and we had a coffee and cake there.  It was great to be able to just stop if we wanted to with no kids asking why, or having a deadline we were working to.

Nice coffee, nice staff.

It was just before 12 so Derek decided to take his noon HC a couple of minutes early to save taking it in the car.  By now the morning clouds had gone and the day had turned to an amazing NZ day.  Bright blue sky, warm sun and picturesque views everywhere.

We headed toward the Desert Road getting views of Mt Ruapehu as we drove.  It was a glorious snow covered mountain looming ahead with no cloud around it.  A sight you always want to see, but don’t often get to see.

As I drove the Desert Road Derek was feeling a bit better, so took photos.  Anyone that has driven the Desert Road will know that you go along open roads, long and straight, with slight inclines as you rise in altitude.

At the northern end of the road, you begin the decent to Lake Taupo.  It is steep, windy and very much an up and down decent.  You have to go slow in some areas. And you cannot see what is coming round the next corner.

We were following behind another car which was travelling at a steady, safe speed.  As we were going along the car in front began to round a corner when I noticed he applied his brakes and slowed right down.  The car went from view but as I began to round the corner he was stopped, a car in front of him was stopped, and a car heading in the opposite direction was also stopped.  They were all talking.  There was no room on either side of the road.

Although I was slowing because I had seen the car breaking in front of me, I applied the brakes harder, bringing the car to a quick, but safe stop behind the other vehicles.

Derek hadn’t seen what was happening and suddenly felt the lock of his seat belt as the car came to its stop.

As you would expect, it gave him a bit of a fright.  Nothing major had happened.  His heart should have done a flutter, and he should have then been fine.  Unfortunately that wasn’t the case.

Instead, his brain told him there was something wrong, he had to hold on, but his “fight or flight” didn’t kick in and he had to analyse and think about what he had to do.  There was no instinctive reaction.  It was only because he knew we were stopping that he knew he had to hold on.  He then swore.

I realised it was a “Pilot” vehicle coming in the other direction and we had to pull over as there was a very wide load coming round another blind corner towards us and there wasn’t room for us and them on the road.

Once the wide load, and the following Pilot Vehicle had passed us we carried on over the windy road.

About 5 minutes later Derek could feel his energy being slowly drained from him. He likened it to someone pulling the stopper out of an oil sump, and the oil, thick and sludgy, slowing draining away.  He began to get a very heavy headache across his temples, and just wanted to shut his eyes.  He couldn’t do anything.  Over the next half hour he began to start yarning, he felt sore, tired, and he couldn’t focus on anything (brain frog again). I tried talking to him, but he couldn’t speak properly, he was far too tired.  He felt like he was going into crisis.  At the end of half an hour he realised he wasn’t coming right as quickly as the first time. Again I tried talking to him, but he was becoming irritable.  All he really wanted to do was lay down and sleep, but he couldn’t as there was nowhere to pull over.

Earlier, when we were stopped for a snack, he had taken 10 mg of HC.  It should have only just been kicking in when the incident happened and he said it felt like he used it all in that incident and had nothing in reserve.

Luckily his meds were only just going into his body, so, although it took over an hour from the incident, he did begin to recover.  If he hadn’t just taken his HC he certainly would have had to take a large dose to make it up.

He felt tired for the rest of the day, even when he had taken his 4 o’clock HC.

Thankfully the rest of the journey went relatively smoothly and there were no more “incidents”.

We stopped at Taupo for a snack as we were too early to head to the homestay we were booked into for the night.

Day 2 of our holiday dawned dull and grey.  We had a lovely breakfast, served up by our very hospitable hostess.  After breakfast we went for a short walk along the country road where we were staying but it started raining so we had to head back to the Homestay.  We had a light lunch and then settled down to read.  We both fell asleep for a while.

Eventually we woke and, as there was no going outside because of the weather, we sat playing cards for several hours until dinner was ready.

Derek was tired so after dinner, we headed to our room to lay in bed and watch TV.  Well, I watched TV, Derek slept.

Day 3 and we were packing our bags to head to Hamilton.  Thankfully the drive from Taupo to Hamilton was without incident.  Derek had recovered from our trip up, and he was happy to be heading to our friends place.

Road Trip, Ready? or Not

Adrenal Insufficiency means you don’t have cortisol, this means you don’t have easy access to your “Stress” hormones.  You have to take hydrocortisone when you are stressed.  It’s better to take extra BEFORE you get stressed, but of course, you don’t know when you are going to be stressed some times, so that doesn’t work.  Stress, both psychological and physical, makes you very tired, this could be stress of work, stress of ill health, stress in the house (things breaking down, kids etc), or stress from an outside source that doesn’t understand what you are going through internally.

We have had various “stressers” lately.  Derek has had work issues that have been plaguing him since before he got sick.  The kids are “growing up” and trying to be independent (sometimes a little too much).  And he has been trying to deal with Accident Compensation Corporation.

Work understands the need to try and control his stress levels.  They don’t always manage it, but they try.   The kids will always be kids.

ACC are a completely different kettle of fish.    They just don’t get what having no “Stress Hormones’ means.  They are supposed to be there to make accidental illness/injury and recovery easy, and fast.  In practice, they make it a lot harder because of a lot of internal issues within the organisation that they push on to their “clients” that just adds to the stress of recovery.  I suspect the most over worked department in ACC is their complaints Department.

It will be 12 months at the end of September, since Derek suffered his Adrenal Infarction. He still hasn’t recovered from the multiple organ failure, and he hasn’t rested because he has had to work to keep paying the mortgage, so recovery has basically taken a back seat.  With stress building all the time.

We have decided to take 2 weeks off work.  We are going to travel up country to get completely away from work and hopefully ACC.  We are only away for about 7 days as I would like Derek to rest for a couple of days before the trip.  He will also need to relax after we return as we don’t know what stress the trip will put on him.

Last time we took time off work as for 2 days over a 3 day weekend and we spent the whole weekend redecorating the home office.  It wasn’t a rest.  In fact, Derek was worse afterward, than before. (See Taking a Long Weekend)

This time, it is OUR time.  Not time for the house, or the kids, or anything else.  It is for US to have a rest.

What even we didn’t understand until we found ourselves in the position, is how tiring chronic illness can be, not only on the person with the illness, but on the people around them, trying to care for them.

It’s something those on the outside looking in don’t always understand. I have to admit, I didn’t realise how hard it could be.   It’s like having a small child that needs all your attention, except they don’t get older, and need you less, normally it’s the opposite.  They get worse, and need you more.

It will be the first time we have been more than an hour from home, and our local hospital.  We won’t be more than 2 hours from any hospital as we travel up country because NZ isn’t that big, but having to visit a hospital that has not had to deal with Addison’s (and we won’t know if we have to visit one, or if they have had to deal with it, unless we rock up to one) is a little scary.

We are taking 2 emergency kits of 100mg HC with us just in case.  We are also planning on taking copies of his medical notes pertaining to September last year so we can inform anyone if something goes wrong and we end up at a Hospital somewhere.  New Zealand Hospitals are supposed to be linked so any hospital can access your medical records, but I suspect in practice it doesn’t work that way so better safe than sorry.

I will work on the theory that if we taken them, Derek will behave himself and we will stay out of hospital.  If we leave them behind, we will need them.

Planning doesn’t take away the apprehension.  It doesn’t matter how much we plan, we don’t know what will happen.

Driving up we have other drivers to contend with.  We will be driving through the centre of the North Island, which can close down due to snow, with only an hours notice.  It is not unusual to get caught in snow and have to be rescued.  Because of this, we will take extra food, and some blankets to keep warm along with our normal emergency items.

We are really looking forward to going away.  We are seeing some very close friends whom we haven’t seen for over a year.  But it’s also a little scary as we haven’t done this since Derek almost died.

Let’s hope things go smoothly and we get the rest we need.  Roll on September.