I turned the alarm off the night before our journey was to begin. We decided we would wake in our own time, and leave when we were ready. No pressure, no time restraints.
We were kindly woken by my sister wishing us a safe journey, before our alarm would normally have gone off.
We packed the car, had breakfast and prepared to leave.
On waking Derek took an extra 5mg of Cortisol, just to allow for the stress of travelling.
20 minutes into then journey it happened. Our first “event”. I had been flashed to indicate something around the corner. It was a police car watching for speeders. I wasnt speeding so no problem. Except that Derek said “wow” and as I turned a bird tried hitting the corner of the windscreen.
Sure enough, Derek went quiet, his head started hurting, he started going quiet.
The difference beyween this time and the last road trio is that he had taken the extra Cortisol before departure and the incident happened as he was at the peak of its release.
An hour later he still decided to take more HC (5mg) and some panadol for the headache.
Knowing why it happens now doesnt make it easier, but at least we know what we can do to help reduce the effects.
After a rest in Levin we continued on our way. Derek was a lot quieter than previously and just rested until lunch at Waiouru Museum. This time it was me that needed a rest. I kay on a couch for 1/2 an hour to rest.
Derek took more HC. His lunch time dose plus extra.
He was still very tired. We now had the worst part of the journey. We were about to travel The Dersert Road. The part of the trip that ruined Derek last year.
Most of the Desert Road went well. That was until we got behind a Truck and Trailer unit traveling around the Three Sisters. It is the very windy hilly up and down as you slowly make your way out of the central plateau.
We reached a Slow Vehicle bay and the truck pulled over. As I was about to pass another truck and trailer unit came round a blind corner on the other side of the road. There was a squeeze play going on with my little car in between these two very large trucks, trying desperately to get through. I made it, but not without a casualty. Derek again started to feel heady, more tired all the usual suspects. Thankfully again his drugs had had time ti kick in so the worst didn’t last too long.
The rest of the trip was reasonably uneventful. We arrived at my sisters place safely. Derek immediately went to lay down for an hour. We arrived right on HC time so another double dose. Its not making him feel great, but at least he is conscious.
An early night was called for. He was in bed asleep by 7.30 even with all the extra meds.
This was a quiet day. We relaxed during the morning, then met the Mother of the Bride for a quick lunch. Because we had a relaxing day, he didn’t take any extra meds. He was tired, but was able to function on normal dosing. His BP was reasonably stable and he kept drinking water all day.
We went to a large shopping centre after lunch to pick up a couple of things for the wedding then went home to rest again.
All was good. Experience told us that If he hadn’t taken extra meds for traveling he would have been extremely tired on day two.
The day of the wedding dawned bright and sunny. We woke slightly later than normal and packed our overnight bag.
When planning the trip we looked at the venue for our friends wedding. It was a Manner House slightly out in the countryside an hour from where we were staying.
Planning is essential with an illness like Addison’s. We looked at the idea of staying at a motel in the small town down the road from the venue. To do that would require the following logistics:
- Accommodation booked vor the night, with early check in.
- A taxi cab to the venue for the ceremony.
- Somewhere for Derek to have a rest between the service and the Wedding Breakfast. We had to do this because there were over 100 guests and the noise from them all would put Derek’s brain into sensory overload and would knock him down for the rest of the night.
- A taxi cab back to the accommodation if there was nowhere else to rest. Then another taxi cab back to the venue for the Breakfast.
- A taxi back to the accommodation for Derek by about 9pm, but he would have to travel back to the accommodation on his own as I wanted to stay for the dance.
- Finally a taxi cab for me to get back to the venue around midnight for me.
This was a crazy idea so we looked at the venue for accommodation. It was very expensive, but it meant that I could relax. Derek could rest when ever he needed to, and I would be able to check on him even while enjoying myself.
This turned out to be a good option because another good friend of the Brides family decided to go halves in the room. It was a very large room with two queen sized beds, and it would reduce considerably, the cost.
With this in mind we packed the car ready to go to the venue. I had arranged an early check in so Derek could have a rest before the wedding.
What a good idea that was. We stopped at a cafe for lunch. Our hot coffee had arrived and I proceeded to send mine flying all over the floor and table. If you have read my blog before you know that this would probably cause Derek to go into brain overload because he would want to respond and try to to process what had happened and how to fix it.
The staff were great, they even gave me a new coffee. Within 5 minutes Derek was taking headache pills and extra HC. He sat there looking very ill.
We left the cafe, and I drove to the venue and in. I escorted Derek up stairs, put him to bed and then emptied the car of all bags etc.
We had 2 hours for Derek to recover. Because he took extra HC at the time of the incident we decided he should take his normal 12 o’clock dose just before the service. We had already decided he should take extra meds to stay awake.
Although a little sluggish, Derek made it to the Service. He made a decision not to take his normal water bottle to the service. That was a mistake. By the end of the service he could not stand up properly. He hadn’t drunk any water in an hour and was suffering. As soon as I could I went to our room to get more water.
We then had 2 hours to “hang out ” with the guests while wedding photos were taken.
Derek went to his room for a lay down for an hour and then came down to socialise with the other guests. He came down just after 4.30, so he had more HC on board but his brain could not cope with the noise of so many conversations. He spent half an hour with everyone before he had to escape to a quiet place as he was becoming brain fatigued and getting another headache.
We finally went to the Dining room for the wedding breakfast. It was a lovely meal, with speeches in between each course. It worked well, but again, Derek was in a room full of people all talking. The din was over whelming and I noticed him getting extremely tired, and not able to hold, or follow a conversation properly.
Finally, the last of the speeches was had, and it was time for the First Dance of the Bride and Groom. It was lovely, and a joy to watch. It made me want to get on the dance floor with my husband and have a lovely slow dance with him.
Alas, that was not to be. No sooner had the band struck up their first notes of their first son than Derek looked like he was about to hit the floor. The noise was too much. He had to get out of there quick.
We made a hurried good bye to the bride and her parents and I took him back to the room. He was cold, tired, had a headache, and his BP was starting to drop.
I gave him water, put him to bed with a heater on, and I went back to the dance.
This is evidence that our social life has changed for ever. 2 years ago we would have been up dancing all night, having a great time. Now I sit with others while my husband lays in bed.
There is no compensation for this change that the hospital’s mistake has caused to our lives. The medical profession don’t even understand, or appreciate what they have done. for our social life. Derek finds it frustrating at times that he can not have a “normal” social life. All they tell us is that we have to adjust and change, and just get over it.