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 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.

A Long Slow Recovery

ON 30th May  the “Experiment in Independence” ended.  At least that’s what we thought.  This weekend is the first weekend since then that Derek has actually felt like he can “do things”.

Wednesday Derek had a meeting with ACC to discuss where they are at to date regarding the reimbursements, wage compensation etc for while he was off work for 15 weeks last year.  I picked him up from work, and drove him to the meeting.  He had just taken his 12 o’clock dose of HC and then met his CM.  By 1. 40 he was starting to rapidly go down hill.  He had to take extra HC.  We put it down to the stress of the meeting.

Thursday he woke feeling OK.  Not as tired has he was the previous week.  The stress of the meeting the previous day had not had a major effect on him because he took the extra HC.  This is how things SHOULD be.

Thursday we went out for 2 hours (in horrible weather) to watch our teenagers perform at a Music Presentation at school.  Friday night Derek stayed up until 9.00 pm (normally bed for him is 7.30).

Saturday Morning he sat in the car while our Learner Driver daughter drove to her job, and he drove back home which is  3KM of driving.  Not far, but the furthest he has driven in over a month.  We went to the Hardware Store (me driving), took my son to band practice (me driving).  He actually felt like coming rather than resting.

Saturday morning, where Derek would normally be tired, and want to rest, he felt like he could go out with me.  I noticed that when 12 o’clock came round, he was surprised when his alarm went off to get his HC.  In the last 4 weeks he was hanging out for 12 o’clock to come.  4pm, again he was happy to wait.

It wasn’t a lot, but it was a great improvement.

The biggest difference this week is that he has been getting a Taxi to work and home again all week.  ACC came to the party, and it has definitely made a difference.

It was suggested at one point by someone, that “If you are too sick to get to work, perhaps you shouldn’t work.”  This is not an option as it is the mental stimulation of working that keeps him alive.  IF he didn’t have that, then I am sure he would not get well.

We have the Taxi for 3 week, then it will be re-assessed and they will see what they can do.  It’s a start.  It has given him a chance to recover from everything.

The weather was terrible this week (a major storm by Friday) but he survived it well and has now reduced his meds back to 10/10/5.  Once he has leveled out some more, he may try going back to the 10/7.5/5 that is recommended.

Sunday morning came and he didn’t feel the need to roll over as soon as he woke to take his HC so he left it for 10 minutes.  He then got a surprise when 12 came again.  He didn’t immediately stop to take his HC, but finished what he was doing.  15 minutes later he was stopped.  Again, he didn’t feel like he was running low.

Fingers crossed he will stay at this level for a while.  We can only put the recovery down to having a lift to and from work in the cold and wet.  It means I have the chance to relax a bit as well.

Getting a basic level of Fitness back is the next challenge.