Day 8, Friday
I had planned spending the day at least in the hotel, probably in bed, after Disney World, which was probably a good thing. I wasn't in a very bad shape (the worst normally doesn't hit until a few days after), but I certainly needed the rest. I slept long, and spent most of the day in bed while Tollef left to see the NASA station at Cape Canaveral. When he came back we went out to have dinner at the resort, and dropped by for some last souvenirs and postcards in the hotel shop. I found a very cool halloween t-shirt and a bag that says "Point me to the candy".
Day 9, Saturday
I had woken up several times during the night, hearing the rain pouring. When we woke up, it still did. We gathered our things, and hit the road towards Tampa and Tollef's relatives that we were visiting. The rain was sometimes so heavy we barely saw the road, but lightened up when we closed in on Tampa.
Tollef's great aunt lived in a beautiful house on a large property outside Tampa. A short while after we arrived, her daughter Sonja and granddaughter Laura also came by, and we had a very nice lunch. After lunch the others went to a park to watch for alligators, while I stayed back to rest, still quite tired. In the evening, Tollef and Laura cooked a very nice dinner, and we had a very good time together.
Day 10, Sunday
On Sunday morning I got up a bit late, and the weather was nice and shiny again. We had agreed to meet the others on a beach they recommended, and we took a detour across the Skyline Bridge, which is a very large and steep bridge that glimmers like gold in the sun.
We drove with tante Lillegunn on to Siesta Key Beach, and met Sonja, Laura and Laura's sister Allison there. The beach was lovely even if it was a bit strong wind and waves. We went out in the sea, and the water temperature was far above what you ever get in Norway. We sat relaxing and enjoying the beach for a couple of hours, and talked about everything and nothing. From there we went to a restaurant they knew nearby and had a faboulus lunch with seafood. Tollef and I started out with fried gator (yes, alligator), and then a seafood combo platter with a lot of different things. Then we all shared a key lime pie for dessert, it being a local specialty. We had a really great time, and I hope we get to see our relatives soon again!
After the lunch the others headed back home while we continued on to Miami, our last long drive on this trip. It felt almost a bit sad and weird, not going to explore along the roads any more, but a few relaxing days by the pool wouldn't hurt either.
We had enough food for lunch, so we skipped dinner, just dropped by a Walmart to stock up on snacks.
Day 11, Monday
First day in Miami Beach. The hotel turned out to be really nice, a bathrom you could actually turn around in, and with a bathtub, fridge, and two big beds. We went out to get breakfast, and it appeared the restaurant downstairs was both reasonable priced and had good food. After breakfast, I settled by the pool while Tollef went exploring the neighbourhood. He joined me, and we lazed by the pool until early afternoon. In the evening we went for dinner at a Mexican restaurant Tollef had found online, Senõr Frogs. It appeared to be a kind of party place serving food, but as we were there early evening the party wasn't started yet. We got balloon hats and good food. They also had all kinds of funny puns on the walls and roof! On our way back we stopped at an Irish pub so Tollef could have another beer, and also got some postcards written. Important part of any holiday!
Day 12, Tuesday
Miami shopping day! Whenever you see something on your travels that you consider buying, don't count on finding it in any of the same chain stores in a different place. They might be out... After a lot back and forth with websites, webshops, next-day-delivery tries and searching, we ended up going halfway through Miami to get me a nice dragon. Then we had a stroll through Bayside, a shopping center/market in a park by the beach, and spending way too much money on Bath and Bodyworks, one of my favourite stores in the US. We also dropped by PetSmart to get some treats for the dogs before heading back to Miami Beach.
Tollef had found a couple of places with Mediterranean food for lunch. We headed for one, but passing the other nearby, I decided the meny looked better there. And maybe it was, if they'd had all that was on it... for some reason the guy didn't have any salad, and listed the things from the menu they did have. He could recommend mostly everything, it was all very good, he said. And all the pizzas. Except when I asked for one, then they didn't have that one, or my second alternative. But the rest was very good. I asked if he had sweet pepper/paprika to put on one of the meat pizzas, and got a negative. At last I just decided on a veggie pizza, which when it came, was loaded with paprika... The food was good enough, but why these people have a 5 score on Google is a mystery yet to be solved.
After lunch Tollef packed and left for the Kennedy Space Center for his Austronaut Training Experience tomorrow, while I went upstairs to the roof terrace pool and got in a few hours of sun before it went down.
Day 13, Wednesday
We are closing in on an end, but I am really happy about this vacation. There were so many worries beforehand about my health, and I am not sure if things could have been much better. As usual, with most travel, it will be nice to come home also, to my own bed, house, dogs and family.
Today I started out with a few hours by the pool, before heading out for lunch and looking around. I ended up all the way to the postoffice to get postcard stamps, and got my nails done for the first time in my life.
When Tollef came back after his Astronaut Training Experience at Cape Kennedy Space Center, we went for dinner at a Cuban restaurant. The food was good, and we returned to the hotel, full and happy.
Day 14, Thursday
We decided to go down to Key Biscayne, a small island south of Miami, with a state park and nice beaches. First, we stopped to look at the lighthouse there, and Tollef joined a tour that happened to start just when we arrived. Afterwards we took our stuff down to the beach and relaxed there for a while, even if it was a bit windy. The wind made the temperature quite nice.
After a quick bath we dried up and returned to Miami beach. We stopped to buy a few last gifts and snacks, and returned to the hotel. For lunch we went to a southern cooking restaurant that was really nice, and we shared a piece of Key lime pie for dessert.
I took the opportunity to have a couple of more hours by the pool after lunch, while Tollef tried some local beer. Then, the inevitable, the packing. There has been some shopping, and we are bringing some stuff for others, so we may have to check an extra couple of bags. Good thing we hardly used our baggage allowance getting here.
Day 15, Friday
We had a nice breakfast at the hotel, before we drove the short distance to the airport. It was quite a puzzle getting all our luggage and my scooter into the airport, but we managed. The flight went as well as the outward journey, even if it was a night flight. I had dinner, and then went to try to sleep. It was quite warm and I didn't manage to sleep much, but at least I got to rest my body and doze off a bit. Enough that I felt ok the rest of the day, if only a bit tired. I love travelling and seing new places and have new experiences, but it is also always good to come home also, to everything that is familiar. I am so happy I managed to make this trip, and have gotten some experience to bring on further travels. Because there will definitely be more of them!
Photos can be found at https://www.simira.net/gallery/Reise/20191025-USA-Eastcoast/
søndag 27. oktober 2019
mandag 21. oktober 2019
2019 USA East Coast Road Trip
Travelling is always an adventure. No matter how much (or little) you have planned, there will always be experiences you didn't expect. For good and for bad...
But, starting from the beginning. We have seen a bit of the US, but talked a lot about taking a road trip down the east coast, and decided to do it this year. Tollef had some bonus points to use before they expired, and we booked the flights a year ago.
Then, my illness got worse over the winter, and one of my worries was not to be able to go at all. And it was close for a long time. I got a "test run" with a few days on my own in UK this summer, which was tiring but went fairly ok. It's a longer flight to the US and we had a longer holiday planned, but I would have Tollef to take care of a lot more of the small bits that costs me a lot of energy. I also have an electrical travel scooter to use for the typical places when we walk a lot for sightseeing and shopping. And, we are spending the last few days at Miami Beach for rest, sun and heat.
So, off we went.
To my relief, the flight went as good, if not better than, it could have. It was one of the worriesome points of the trip, being a long flight, and airports can be quite tiresome. With wheelchair assistance and plus seating in the plane it was really nice.
Arriving in Newark, we got our rental car and got out on the road. I was a bit confused when Tollef said the drive to our first motel would take twice as long as I had found out earlier, 4 instead of 2 hours. Even if the flight went well, we were on a different timezone and a bit tired and ready for some rest. It was also a lot of detailed navigating in the start. The areas we drove through were very backway and rural, so I wondered a bit. Then, after driving for two hours, I discovered the GPS were set to avoid motorways... Yay. Our first adventure on the trip. At least we got there in 3 hours, and got a good, long nights sleep.
Day 2, Saturday
Waking up, not unexpectedly, early, we found a nearby café serving breakfast. I had a nice oatmeal, and couldn't resist trying their lavender milkshake, which was incredibly good! Then we headed towards Gettysburg National Military Park Museum & Visitor Center, to be educated on the Battle of Gettysburg, one of the turning points of the civil war. We saw a short movie introduction, and then a huge 360 degrees painting of the battle scene, before going through a huge, detailed museum. It was nice and interesting, but too much information and noise (because of several scouts and school groups) for me, so I went through the museum quite quickly, getting the main parts of the preface and days of the battle. After a short round in the museum shop I found a quiet corner to rest and wait for Tollef.
From Gettysburg we headed towards Washington, stopping at a Cracker Barrel for lunch. Being Saturday lunchtime, I had forgotten how loud and busy it could be, but food was good, and I got some discounted bath salts. Getting in to downtown DC took some careful navigating, but we were rewarded with arriving at a quite nice hotel nearby the Capitol. We were too tired from jetlag to do much more, but went to the neighbouring Dubliner pub for dinner before crashing in to bed, more or less.
Day 3, Sunday
A few days ago the weather forecast promised sun and warm weather, so I was disappointed to wake up to clouded skies and a chilly temperature. We had breakfast at a neighbouring café (oatmeal again, this time without the milkshake), and then went up to Capitol hill and along the Mall. It's a really nice area, we walked through a part of the botanical garden, a sculpture park, and up to the monument. We went up to the White house as well, although it was mostly covered by fences and protection, so not much to see there.
I still wasn't quite recovered from the travel and previous day, so I headed back to the hotel to rest, while Tollef visited the Space and aircraft museum. Half a day in bed really helped my form, and we went out for pizza when Tollef came back. We also dropped by Walmart to get a cell phone holder for the car as we use it as the GPS, and they had inflatable dragons there for halloween. I really want one of those!
Day 4, Monday
I had an easy morning in bed. Tollef went out and got breakfast back to the hotel room (pumpkin bagel with pumpkin smear! It is halloween after all), before he went out for a run along the Mall. After returning, we checked out and hit the road.
The first stop was lunch at a brewpub in Richmond, and a visit to the American Civil history museum. I was a bit sceptical after Gettysburg, but in comparance this was almost disappointing. It was very nice and gave a chronological year-for-year overview of events and a lot of information, but not nearly as much as Gettysburg. Which was probably really a good thing.
From Richmond we decided to drive a couple of hours further towards Charleston, and ended up staying at an inn in the town Rocky Mount, after a proper American Diner meal.
Day 5, Tuesday
After a light breakfast we headed south towards Charleston via Myrtle beach. I was quite tired after the previous day's sightseeing, and concluded the museum visit in Charleston had to go. Tollef drove for the first 3 hours, and then I took over just before lunch. We had lunch in Myrtle Beach, a holiday area with lots of restaurants, arcades, amusement parks, playgrounds, and of course long sandy beaches. The temperature went up a bit, and even with wind and clouds we had a very nice walk on the beach, before getting lunch at a greek fast food place.
The last two hours on the road went quickly, and we checked in to a very nice Victorian style hotel in Charleston historic district! The room was lovely, with old style furniture (and modern bathroom and aircon).
I had a short rest, before we went out. First we went though the Charleston historic market. It was very nice and I wish I had more time there. It was also about to close, so a lot of stalls were packing up, but there was also fewer people than in the middle of the day. The place Tollef had found for dinner was closed, so we ended up in a very nice bar and grill place instead.
Still feeling tired, I booked a massage at a spa nearby our hotel, which appeared to be a really good professional hotel spa. It felt really good to losen up some tight spots and just relax in lavender-infused care for a bit. A very nice ending to the day!
Day 6, Wednesday
I woke up, and still felt tired, so decided to take it as easy as possible on a 6 hour drive. Tollef drove most of the way. We stoppet at a Sabatier outlet for cooking knives, and got outselves a couple of new ones to replace some of the old we have at home. I already look forward to cooking next time!
Lunch was pancakes at iHop, just one of those things it is nice to do once during a trip like this. After lunch we took a detour to drive along the beach, unfortunately beach houses were blocking the view most of the time. We stopped at a supermarket and stocked up on drinks and some food for the next few days, and then what felt like a really long day on the road, finally arrived in Disney World.
Is it expensive at the Disney World resorts (at least when you're late for booking), but you also get your money's worth. The service was great, and room very nice. Several pools nearby (that we probably won't have time to use much), and nice grounds. We ordered pizza ro the room for dinner and packed for Magic Kingdom the next day, crossing fingers that I would feel less tired after another good nights sleep.
Day 7, Thursday
Even though we are not particular Disney fans, it felt silly to pass by Disney World without a visit. With my health issues also, I was a bit worried about how much I would be able to enjoy it. I wasn't sure I was able to do more than a couple of hours, or whether I should or would need to go back to the hotel for a rest during the day. I planned on using my travel scooter, brought earplugs for the noise, and had scouted out a couple of places that was supposed to be quiet in the park. And hoped for the best.
We got up early and got the first bus to the Magic Kingdom park, which is the iconic Disney park with Cinderella's castle. The first hour was "Extra magic hours" for people staying on Disney resorts, so the queues and pressure was low and the atmosphere very nice. We had planned by booking some fastpasses, and I had decided to take it easy and relax and enjoy the atmosphere. The time flied, and I actually ended up making the whole day in the park, with some breaks for resting in different places. Using the mobility scooter and earplugs helped a lot. During the last two hours I got a bad headache, probably from the sun and heat even though I had been drinking huge amounts of water. I probably should have cut it after the last ride, but like always, it is too tempting to just have a stroll around the last bit, have dinner, drop by the castle for the mandatory in-front-of-the-Disney-castle photo and some shopping for souvenirs and gifts. By the time we got back to the hotel my body was hurting and exhausted. But I was satisfied and very happy that I actually got to see the whole park and do a lot more than I had expected to. What we did?
Tollef also did Big Thunder Mountain, Space Mountain (twice!), Speedway and Aladdin's carpets.
One of the things that I was positively surprised about was the mobility access and service in the park. I had expected it to be quite good, but mostly it was even better than expected. I could either drive my scooter the whole way to the start of a ride (then getting in to a boat, honey jar or whatever), or leave it by the entrance and transfer to a lighter wheelchair for the queue. For theater experiences like the Laugh floor, Philharmagic and Hall of Presidents, there were designated spots for scooters, and the staff was always very helpful.
All in all, we had a fantastic day in Disney World!
But, starting from the beginning. We have seen a bit of the US, but talked a lot about taking a road trip down the east coast, and decided to do it this year. Tollef had some bonus points to use before they expired, and we booked the flights a year ago.
Then, my illness got worse over the winter, and one of my worries was not to be able to go at all. And it was close for a long time. I got a "test run" with a few days on my own in UK this summer, which was tiring but went fairly ok. It's a longer flight to the US and we had a longer holiday planned, but I would have Tollef to take care of a lot more of the small bits that costs me a lot of energy. I also have an electrical travel scooter to use for the typical places when we walk a lot for sightseeing and shopping. And, we are spending the last few days at Miami Beach for rest, sun and heat.
So, off we went.
To my relief, the flight went as good, if not better than, it could have. It was one of the worriesome points of the trip, being a long flight, and airports can be quite tiresome. With wheelchair assistance and plus seating in the plane it was really nice.
Arriving in Newark, we got our rental car and got out on the road. I was a bit confused when Tollef said the drive to our first motel would take twice as long as I had found out earlier, 4 instead of 2 hours. Even if the flight went well, we were on a different timezone and a bit tired and ready for some rest. It was also a lot of detailed navigating in the start. The areas we drove through were very backway and rural, so I wondered a bit. Then, after driving for two hours, I discovered the GPS were set to avoid motorways... Yay. Our first adventure on the trip. At least we got there in 3 hours, and got a good, long nights sleep.
Day 2, Saturday
Waking up, not unexpectedly, early, we found a nearby café serving breakfast. I had a nice oatmeal, and couldn't resist trying their lavender milkshake, which was incredibly good! Then we headed towards Gettysburg National Military Park Museum & Visitor Center, to be educated on the Battle of Gettysburg, one of the turning points of the civil war. We saw a short movie introduction, and then a huge 360 degrees painting of the battle scene, before going through a huge, detailed museum. It was nice and interesting, but too much information and noise (because of several scouts and school groups) for me, so I went through the museum quite quickly, getting the main parts of the preface and days of the battle. After a short round in the museum shop I found a quiet corner to rest and wait for Tollef.
From Gettysburg we headed towards Washington, stopping at a Cracker Barrel for lunch. Being Saturday lunchtime, I had forgotten how loud and busy it could be, but food was good, and I got some discounted bath salts. Getting in to downtown DC took some careful navigating, but we were rewarded with arriving at a quite nice hotel nearby the Capitol. We were too tired from jetlag to do much more, but went to the neighbouring Dubliner pub for dinner before crashing in to bed, more or less.
Day 3, Sunday
A few days ago the weather forecast promised sun and warm weather, so I was disappointed to wake up to clouded skies and a chilly temperature. We had breakfast at a neighbouring café (oatmeal again, this time without the milkshake), and then went up to Capitol hill and along the Mall. It's a really nice area, we walked through a part of the botanical garden, a sculpture park, and up to the monument. We went up to the White house as well, although it was mostly covered by fences and protection, so not much to see there.
I still wasn't quite recovered from the travel and previous day, so I headed back to the hotel to rest, while Tollef visited the Space and aircraft museum. Half a day in bed really helped my form, and we went out for pizza when Tollef came back. We also dropped by Walmart to get a cell phone holder for the car as we use it as the GPS, and they had inflatable dragons there for halloween. I really want one of those!
Day 4, Monday
I had an easy morning in bed. Tollef went out and got breakfast back to the hotel room (pumpkin bagel with pumpkin smear! It is halloween after all), before he went out for a run along the Mall. After returning, we checked out and hit the road.
The first stop was lunch at a brewpub in Richmond, and a visit to the American Civil history museum. I was a bit sceptical after Gettysburg, but in comparance this was almost disappointing. It was very nice and gave a chronological year-for-year overview of events and a lot of information, but not nearly as much as Gettysburg. Which was probably really a good thing.
From Richmond we decided to drive a couple of hours further towards Charleston, and ended up staying at an inn in the town Rocky Mount, after a proper American Diner meal.
Day 5, Tuesday
After a light breakfast we headed south towards Charleston via Myrtle beach. I was quite tired after the previous day's sightseeing, and concluded the museum visit in Charleston had to go. Tollef drove for the first 3 hours, and then I took over just before lunch. We had lunch in Myrtle Beach, a holiday area with lots of restaurants, arcades, amusement parks, playgrounds, and of course long sandy beaches. The temperature went up a bit, and even with wind and clouds we had a very nice walk on the beach, before getting lunch at a greek fast food place.
The last two hours on the road went quickly, and we checked in to a very nice Victorian style hotel in Charleston historic district! The room was lovely, with old style furniture (and modern bathroom and aircon).
I had a short rest, before we went out. First we went though the Charleston historic market. It was very nice and I wish I had more time there. It was also about to close, so a lot of stalls were packing up, but there was also fewer people than in the middle of the day. The place Tollef had found for dinner was closed, so we ended up in a very nice bar and grill place instead.
Still feeling tired, I booked a massage at a spa nearby our hotel, which appeared to be a really good professional hotel spa. It felt really good to losen up some tight spots and just relax in lavender-infused care for a bit. A very nice ending to the day!
Day 6, Wednesday
I woke up, and still felt tired, so decided to take it as easy as possible on a 6 hour drive. Tollef drove most of the way. We stoppet at a Sabatier outlet for cooking knives, and got outselves a couple of new ones to replace some of the old we have at home. I already look forward to cooking next time!
Lunch was pancakes at iHop, just one of those things it is nice to do once during a trip like this. After lunch we took a detour to drive along the beach, unfortunately beach houses were blocking the view most of the time. We stopped at a supermarket and stocked up on drinks and some food for the next few days, and then what felt like a really long day on the road, finally arrived in Disney World.
Is it expensive at the Disney World resorts (at least when you're late for booking), but you also get your money's worth. The service was great, and room very nice. Several pools nearby (that we probably won't have time to use much), and nice grounds. We ordered pizza ro the room for dinner and packed for Magic Kingdom the next day, crossing fingers that I would feel less tired after another good nights sleep.
Day 7, Thursday
Even though we are not particular Disney fans, it felt silly to pass by Disney World without a visit. With my health issues also, I was a bit worried about how much I would be able to enjoy it. I wasn't sure I was able to do more than a couple of hours, or whether I should or would need to go back to the hotel for a rest during the day. I planned on using my travel scooter, brought earplugs for the noise, and had scouted out a couple of places that was supposed to be quiet in the park. And hoped for the best.
We got up early and got the first bus to the Magic Kingdom park, which is the iconic Disney park with Cinderella's castle. The first hour was "Extra magic hours" for people staying on Disney resorts, so the queues and pressure was low and the atmosphere very nice. We had planned by booking some fastpasses, and I had decided to take it easy and relax and enjoy the atmosphere. The time flied, and I actually ended up making the whole day in the park, with some breaks for resting in different places. Using the mobility scooter and earplugs helped a lot. During the last two hours I got a bad headache, probably from the sun and heat even though I had been drinking huge amounts of water. I probably should have cut it after the last ride, but like always, it is too tempting to just have a stroll around the last bit, have dinner, drop by the castle for the mandatory in-front-of-the-Disney-castle photo and some shopping for souvenirs and gifts. By the time we got back to the hotel my body was hurting and exhausted. But I was satisfied and very happy that I actually got to see the whole park and do a lot more than I had expected to. What we did?
- Peter Pan's flight, very cool and scenic flight over London by night. Possibly one of the best rides in the park!
- The Adventures of Winnie the Pooh was an exciting ride through the Hundred Acres forest, also very good.
- Mickey's Philharmagic, a 4d movie show, really fun and entertaining!
- Little Mermaid Under the Sea was nice, but felt a bit "plastic" compared to a lot of the other rides.
- A small world wasn't really on my list, but as there was no queue and it is supposedly very popular, I went anyway. It is probably fun for children, but had no appeal to me at all.
- Carousel of Progress was well made, if a bit strange.
- Monster's Inc Laugh floor was a comedy show that I found to be just ok. I was not impressed. Making up jokes fairly much on the spot is hard, which means you have to be good at it for doing this.
- Haunted mansion was a disappointment, really. I was prepared to be scared, but it was just a show of ghosts and skeletons. It probably would have been fun if I hadn't expected something else.
- Seven Dwarves Mine train is one of the most popular rides. I am not quite sure why, because it is a somewhat "light" rollercoaster (but maybe just because that), though still slightly out of my comfort zone. But very nice with the dwarves mining in the mountain and all, and I did scream a lot.
- Mad hatter's teacups is pretty much a normal teacup ride. I don't recommend doing it right after eating lunch though...
- The Tiki room, a show with singing birds. Nice music I suppose, but a waste of time for me really.
- Jungle cruise, here I was expecting a quite boring (and therefor relaxing) boat trip through the "jungle" with animals along the shore, it appeared to be a combined standup show-safari, and a really good one at that.
- The Dole Whip is not a ride, but a very nice pineapple ice cream which is special for Disney World and a very good way to cool down a bit in the heat.
- We came upon the Fantasy Parade almost by accident, and I am glad we did. It was really good, and presented both familiar and new (to me) Disney characters, very fetching and impressive show.
- Hall of presidents is, if you are not tired, a nice presentation of all the presidents in the US. If you are tired, it is also a good place to sit down in comfortable seats and have a rest.
- Pirates of Caribbean is a nice boat ride through the world of Jack Sparrow. Not terribly exciting, but good fun!
Tollef also did Big Thunder Mountain, Space Mountain (twice!), Speedway and Aladdin's carpets.
One of the things that I was positively surprised about was the mobility access and service in the park. I had expected it to be quite good, but mostly it was even better than expected. I could either drive my scooter the whole way to the start of a ride (then getting in to a boat, honey jar or whatever), or leave it by the entrance and transfer to a lighter wheelchair for the queue. For theater experiences like the Laugh floor, Philharmagic and Hall of Presidents, there were designated spots for scooters, and the staff was always very helpful.
All in all, we had a fantastic day in Disney World!
onsdag 18. september 2019
Det går opp og ned her i livet
Sakte men sikkert går tiden, og livet, videre. Oppturer og nedturer. I dag har det gått mest ned, men mer om det lengre ned.
I løpet av mai fikk jeg innvilget elscooter fra NAV, en til hjemmebruk, og en mindre sammenleggbar en til reiser. I tillegg fikk jeg innpass hos en psykolog med hjemmebesøk(!) og psykomotorisk fysioterapeut, som begge er veldig flinke og kompetente, og kjenner sykdommen. For første gang føler jeg at jeg er i noenlunde hensiktsmessig behandling. Psykologen er optimistisk med tanke på at jeg skal bli bedre, målet mitt er først og fremst å stoppe forverringen.
Det jeg hovedsaklig jobber med er en aktivitetsplan der dagene er mest mulig like, energimessig sett. Det vil si at jeg står opp til samme tid (ingen lange formiddager i senga lengre!), spiser til samme tid og legger meg til samme tid. Innenfor et par timer på formiddagen har jeg enten helseavtale (lege, fysio, psykolog) eller en tur med hundene (maks 30 min gange, eller litt lengre med scooter). Aldri to ting på en dag. Samt en kort økt på ettermiddagen (ca 15 min) med rydding og husarbeid. Jeg logger formen daglig, og planen er å øke forsiktig etterhvert. Etter tre måneder har ettermiddagsøkten økt til 30 minutter.
Det er veldig deilig å ha en plan å følge, og slippe den konstante vurderingen av "skal jeg?"/"bør jeg?". Samtidig er det krevende å legge opp dagene og planlegge slik at alt som "må" gjøres blir gjort, og helst litt andre ting også. Men jeg kjenner at formen stabiliserer seg når jeg greier å følge planen, og det er jo godt. Og så er det slik at resten av Verden ikke alltid følger planen, så da gjelder det bare å tilrettelegge best mulig med de hjelpemidlene og kunnskapen jeg har.
Slik greide jeg både å komme meg på fjellet på DNT-hytte og noen dager i England i sommer. Fjellturen ble lagt innenfor "tillatt" gangtid (ca 30 min), men viste seg å være litt lengre enn oppgitt. Med staver og hvilepauser gikk det likevel ganske bra. I England hadde jeg delt opp turen med kortere reisestrekninger og noen hviledager. Det ble likevel krevende nok til at jeg brukte en uke på å komme meg igjen etterpå, men verdt det å få treffe igjen venner og kjente.
Siden Englandsturen i sommer gikk såppas bra satser vi også på å få til vår planlagte ferie i USA i oktober. Da tar jeg med reisescooteren min, og må nok satse på en del hvile på hoteller mens Tollef sightser. Det skal vi få til.
Noe som bringer meg til dagens opplevelse. Etter en uke med litt dårlig form, og dagene i det siste stort sett fylt opp av helseavtaler og hunder, tenkte jeg endelig å få til en bytur med reisescooteren. Både som litt "øvelse" før jeg skal ha den med på reise, og for å komme meg ut litt og gjøre noe "normalt". Jeg har ikke vært ordentlig i Oslo sentrum siden februar, med unntak av et par turer via Oslo S på vei til Gardermoen. Formen var noenlunde ok, fint vær, og humøret på topp. Helt til bussen kom.
Sjåføren ristet på hodet til meg da han stoppet, og mente han ikke kunne ta meg med. Jeg gikk likevel på bussen og løftet over scooteren (den veier 26 kg, og er godt innenfor tillatte mål for rullestol). Han prøvde å lukke døren mens jeg gikk på, og så kom bak og sa han ikke hadde lov til å kjøre med scooteren. Jeg forklarte at det var teknisk sett en rullestol, og hjelpemiddel fordi jeg ikke kan gå så langt, men han nektet. Han skrudde av bussen, og ble stående. Det var 31-bussen på en rolig formiddag, så neste buss kom like bak, og de andre passasjerene gikk over på den, mens jeg ringte kundesenteret. De svarte at det var opp til sjåføren om han ville tillate det, og at han strengt tatt kunne nekte meg å bli med. Så da måtte jeg ta scooteren og gå av bussen igjen.
Bussen bak tilbød meg å bli med, en av passasjerene som hadde gått over kom og ville hjelpe meg, men da var dagen ødelagt, og jeg følte ikke for å kose meg på bytur akkurat. For ikke å snakke om at jeg ikke visste om jeg ville komme meg hjem igjen.
Jeg er veldig klar over utfordringene og diskrimineringen handicappede møter i hverdagen, men jeg hadde faktisk ikke forventet å møte problemer allerede på 31-bussen.
Så nå sitter jeg her igjen da, hjemme i sofaen der jeg tilbringer mesteparten av dagene mine, med hundene sovende i andre enden. Lang klage sendt til NAV, utblåsninger på et par diskusjonsfora. Så håper jeg at jeg orker å prøve igjen en dag før vi skal reise på ferie om en måned. Sannsynligvis da med bil, og prøve å finne parkering i sentrum. Buss frister ikke noe særlig.
I løpet av mai fikk jeg innvilget elscooter fra NAV, en til hjemmebruk, og en mindre sammenleggbar en til reiser. I tillegg fikk jeg innpass hos en psykolog med hjemmebesøk(!) og psykomotorisk fysioterapeut, som begge er veldig flinke og kompetente, og kjenner sykdommen. For første gang føler jeg at jeg er i noenlunde hensiktsmessig behandling. Psykologen er optimistisk med tanke på at jeg skal bli bedre, målet mitt er først og fremst å stoppe forverringen.
Det jeg hovedsaklig jobber med er en aktivitetsplan der dagene er mest mulig like, energimessig sett. Det vil si at jeg står opp til samme tid (ingen lange formiddager i senga lengre!), spiser til samme tid og legger meg til samme tid. Innenfor et par timer på formiddagen har jeg enten helseavtale (lege, fysio, psykolog) eller en tur med hundene (maks 30 min gange, eller litt lengre med scooter). Aldri to ting på en dag. Samt en kort økt på ettermiddagen (ca 15 min) med rydding og husarbeid. Jeg logger formen daglig, og planen er å øke forsiktig etterhvert. Etter tre måneder har ettermiddagsøkten økt til 30 minutter.
Det er veldig deilig å ha en plan å følge, og slippe den konstante vurderingen av "skal jeg?"/"bør jeg?". Samtidig er det krevende å legge opp dagene og planlegge slik at alt som "må" gjøres blir gjort, og helst litt andre ting også. Men jeg kjenner at formen stabiliserer seg når jeg greier å følge planen, og det er jo godt. Og så er det slik at resten av Verden ikke alltid følger planen, så da gjelder det bare å tilrettelegge best mulig med de hjelpemidlene og kunnskapen jeg har.
Slik greide jeg både å komme meg på fjellet på DNT-hytte og noen dager i England i sommer. Fjellturen ble lagt innenfor "tillatt" gangtid (ca 30 min), men viste seg å være litt lengre enn oppgitt. Med staver og hvilepauser gikk det likevel ganske bra. I England hadde jeg delt opp turen med kortere reisestrekninger og noen hviledager. Det ble likevel krevende nok til at jeg brukte en uke på å komme meg igjen etterpå, men verdt det å få treffe igjen venner og kjente.
Siden Englandsturen i sommer gikk såppas bra satser vi også på å få til vår planlagte ferie i USA i oktober. Da tar jeg med reisescooteren min, og må nok satse på en del hvile på hoteller mens Tollef sightser. Det skal vi få til.
Noe som bringer meg til dagens opplevelse. Etter en uke med litt dårlig form, og dagene i det siste stort sett fylt opp av helseavtaler og hunder, tenkte jeg endelig å få til en bytur med reisescooteren. Både som litt "øvelse" før jeg skal ha den med på reise, og for å komme meg ut litt og gjøre noe "normalt". Jeg har ikke vært ordentlig i Oslo sentrum siden februar, med unntak av et par turer via Oslo S på vei til Gardermoen. Formen var noenlunde ok, fint vær, og humøret på topp. Helt til bussen kom.
Sjåføren ristet på hodet til meg da han stoppet, og mente han ikke kunne ta meg med. Jeg gikk likevel på bussen og løftet over scooteren (den veier 26 kg, og er godt innenfor tillatte mål for rullestol). Han prøvde å lukke døren mens jeg gikk på, og så kom bak og sa han ikke hadde lov til å kjøre med scooteren. Jeg forklarte at det var teknisk sett en rullestol, og hjelpemiddel fordi jeg ikke kan gå så langt, men han nektet. Han skrudde av bussen, og ble stående. Det var 31-bussen på en rolig formiddag, så neste buss kom like bak, og de andre passasjerene gikk over på den, mens jeg ringte kundesenteret. De svarte at det var opp til sjåføren om han ville tillate det, og at han strengt tatt kunne nekte meg å bli med. Så da måtte jeg ta scooteren og gå av bussen igjen.
Bussen bak tilbød meg å bli med, en av passasjerene som hadde gått over kom og ville hjelpe meg, men da var dagen ødelagt, og jeg følte ikke for å kose meg på bytur akkurat. For ikke å snakke om at jeg ikke visste om jeg ville komme meg hjem igjen.
Jeg er veldig klar over utfordringene og diskrimineringen handicappede møter i hverdagen, men jeg hadde faktisk ikke forventet å møte problemer allerede på 31-bussen.
Så nå sitter jeg her igjen da, hjemme i sofaen der jeg tilbringer mesteparten av dagene mine, med hundene sovende i andre enden. Lang klage sendt til NAV, utblåsninger på et par diskusjonsfora. Så håper jeg at jeg orker å prøve igjen en dag før vi skal reise på ferie om en måned. Sannsynligvis da med bil, og prøve å finne parkering i sentrum. Buss frister ikke noe særlig.
søndag 31. mars 2019
Hagen min
Da vi kjøpte huset vårt for 10 år siden hadde det en fantastisk hage med flere bed, frukttrær, bærbusker og mye fine blomster. De som bodde her før hadde definitivt hage som hobby. Jeg har hverken tid, kapasitet eller tålmodighet til å virkelig ha hage som hobby, men noe må jo uansett gjøres når man har hage. Dessuten er det morsomt å få ting til å gro og se pent ut.
Hagen før:
De første årene gjorde vi en del for å forenkle arbeidet. To-tre frukttrær har gått heden, en bærbusk, det største blomsterbedet. Likevel står vi igjen med kirsebær, plommer (2), epler (2), druer, rips, solbær (2), jordbær, rabarbra, stikkelsbær (2) og tre blomsterbed. I fjor kom også to plantekasser til i mitt forsøk på å dyrke tomater og paprika, og prosjektet videreføres i år og utvides muligens med en plantekasse for salat.
Frukt og bær er forholdsvis enkelt, der er det jo stort sett klipping og høsting (og den evinnelige rakingen...). Blomsterbedene har i stor grad fått leve sine egne liv, siden jeg knapt har hatt greie på hva som har grodd der og om det er blomster eller ugress. For to år siden startet jeg et lenge påtenkt prosjekt med å rense det største bedet fullstendig og plante lavendel der. Det tok litt tid før den kom, men i fjor hadde vi en nydelig lavendelrekke der. Jeg høstet og tørket noe, men det ligger enda mye igjen fra i fjor.
Foran huset har vi to mindre bed der det gror mye krokus, liljer og en del forskjellig annet jeg er usikker på hva er. Og tre store rosebusker som skyter villskudd og vokser langt fortere enn vi greier å ta vare på dem. I år er planen å fjerne de. Heretter blir det potteroser i hagen. Det ene bedet skal helt bort (det er lite synlig og blir sannsynligvis parkerinsskur for elscooteren som skal i hus), mens det andre tenker jeg å fylle med lavendel igjen.
Lavendelen er forholdsvis lettstelt og lettholdt, og krever ikke mye arbeid for meg å holde på. Litt luking rundt, men mindre ettersom lavendelen får satt seg ordentlig. Og duften! Jeg har en svakhet for lavendel, og et av fjorårets høydepunkter var å besøke Norfolk Lavender Farm i England, og jeg ble enda mer inspirert til å plante mer lavender.
Hittil i år har jeg plantet tomater og paprika i små innendørs-drivhus fra Plantasjen. Tomatene spirer allerede, og vi får se om jeg tør plante dem ut før vi drar på påskeferie eller ikke. Jordbærkassen har vært en utfordring siden jeg fikk den. Kassen er laget av min bestefar på bestilling, og betyr litt ekstra for meg siden han nå er borte. De første årene døde jordbærplantene gjennom vinteren, tross noe skjerming. Spenningen var stor da jeg tok av pledd og presenning i forrige uke og så grønne skudd fra alle plantene! Fjoårets plantekasser:
På jakt etter noe helt annet (info om elscooter/rullestol) fikk jeg kontakt med Anne som driver moseplassen.no, en kjempeflott hageblogg! Selv om det er langt over hva jeg både greier og interesserer meg for så er det inspirerende å se hva man kan få til. Inspirert av hennes blogg vil jeg prøve å ta bilder av hagen måned for måned i år. Det er ikke sikkert jeg får til å blogge hver eneste måned, men kanskje en oppsummering nå og da ihvertfall.
Hagen før:
De første årene gjorde vi en del for å forenkle arbeidet. To-tre frukttrær har gått heden, en bærbusk, det største blomsterbedet. Likevel står vi igjen med kirsebær, plommer (2), epler (2), druer, rips, solbær (2), jordbær, rabarbra, stikkelsbær (2) og tre blomsterbed. I fjor kom også to plantekasser til i mitt forsøk på å dyrke tomater og paprika, og prosjektet videreføres i år og utvides muligens med en plantekasse for salat.
Frukt og bær er forholdsvis enkelt, der er det jo stort sett klipping og høsting (og den evinnelige rakingen...). Blomsterbedene har i stor grad fått leve sine egne liv, siden jeg knapt har hatt greie på hva som har grodd der og om det er blomster eller ugress. For to år siden startet jeg et lenge påtenkt prosjekt med å rense det største bedet fullstendig og plante lavendel der. Det tok litt tid før den kom, men i fjor hadde vi en nydelig lavendelrekke der. Jeg høstet og tørket noe, men det ligger enda mye igjen fra i fjor.
Lavendelen er forholdsvis lettstelt og lettholdt, og krever ikke mye arbeid for meg å holde på. Litt luking rundt, men mindre ettersom lavendelen får satt seg ordentlig. Og duften! Jeg har en svakhet for lavendel, og et av fjorårets høydepunkter var å besøke Norfolk Lavender Farm i England, og jeg ble enda mer inspirert til å plante mer lavender.
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| Lavender fields forever... Norfolk Lavender Farm |
Hittil i år har jeg plantet tomater og paprika i små innendørs-drivhus fra Plantasjen. Tomatene spirer allerede, og vi får se om jeg tør plante dem ut før vi drar på påskeferie eller ikke. Jordbærkassen har vært en utfordring siden jeg fikk den. Kassen er laget av min bestefar på bestilling, og betyr litt ekstra for meg siden han nå er borte. De første årene døde jordbærplantene gjennom vinteren, tross noe skjerming. Spenningen var stor da jeg tok av pledd og presenning i forrige uke og så grønne skudd fra alle plantene! Fjoårets plantekasser:
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| Odin bak kassene ETTER kjøp av NYE tomatplanter OG nettingbeskyttelse etter at han gravde opp første runde med planteskudd, og forsøket på å redde dem... |
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| Tomatene litt senere på sommeren. |
På jakt etter noe helt annet (info om elscooter/rullestol) fikk jeg kontakt med Anne som driver moseplassen.no, en kjempeflott hageblogg! Selv om det er langt over hva jeg både greier og interesserer meg for så er det inspirerende å se hva man kan få til. Inspirert av hennes blogg vil jeg prøve å ta bilder av hagen måned for måned i år. Det er ikke sikkert jeg får til å blogge hver eneste måned, men kanskje en oppsummering nå og da ihvertfall.
Her er hagen i dag:
Langs garasjeveggen:
Foran huset:
Mysteriet ME
Selv om jeg ikke blogger mer enn noen få ganger i året føles det uendelig lenge siden bloggen om fjorårets bilferie til England. Jeg satte utrolig stor pris på å greie å gjennomføre den turen og nyte den, noe jeg slett ikke var sikker på.
Mot slutten av juli i fjor gikk det virkelig opp for meg hvor mye dårligere jeg var enn for noen år siden. At jeg stadig blir gradvis dårligere, sakte, nesten umerkelig, men når jeg sammenligner aktivitetsnivået for et år siden, to år, tre år, så er det en tydelig endring. Vintrene er verst, så blir jeg gjerne litt bedre utover våren og mot sommeren, men sjelden like bra som jeg var før vinteren. Og selv om noen blir bedre uten at man vet hvordan og hvorfor, så er også frykten og faren der for at jeg sakte nærmer meg den gruppen som stort sett er sengeliggende døgnet rundt.
Jeg var sykemeldt i nesten to måneder, og kom meg på beina igjen utover høsten og tilbake på jobb. Det gir så utrolig mye å jobbe med disse fantastiske frivillige, og selv om det i perioder er utfordrende så er jeg veldig glad i jobben min. Og da vet jeg at når jeg kommer til det punktet at jobben føles som et ork og jeg ikke greier å få til hverdagslige oppgaver hjemme at det er på tide å sette ned tempoet. I vinter hadde jeg tatt flere forbehold og bevisst satt ned tempoet i januar og februar. Men mot slutten av februar begynte ting (jeg) likevel å falle sammen. I skrivende stund har jeg vært sykemeldt i en måned, og er det ihvertfall i to uker fremover.
Det første som skjer når jeg begynner å kjenne på den virkelige utmattelsen er frykten. Frykten for å miste hverdagen min, frykten for å bli verre, frykten for å ikke kunne dra på den planlagte ferien, svikte jobben, bli en belastning for familien... Når kroppen verker og utmattelsen virkelig slår inn så mister jeg all form for mestringsfølelse og mening i hverdagen. Men jeg vet også at bare jeg får NOK hvile så er alt lettere å takle. Jeg må bare justere aktivitetsnivået. Igjen. Kutte ut litt mer. Gå kortere og færre turer med hundene. Finne flere mulige måter å avlaste hverdagen på.
Etter noen uker med sykemelding har jeg fått hvilt nok til at jeg ser klarere framover. Jeg har søkt NAV om el-scooter for å kunne ta hundene på tur. Søkt kommunen om handicap-parkering slik at jeg slipper å være helt gelé i bena når jeg kommer til fysioterapi. Og ikke minst, sørger for å legge meg ned og hvile mer i løpet av dagen.
Det er noen terskler å forsere, og jeg er forberedt på at jeg framover kanskje må tilpasse enda mer. Så lenge jeg greier å gjøre litt hver dag, og ikke for mye så utmattelsen tar helt over, så takler jeg det greit. Når jeg gjør for mye og tipper over grensene tar det noen dager eller uker igjen før finner roen igjen. Heldigvis er våren i anmarsj, og jeg veksler mellom å gleder meg til den forventede bedringen kommer og å ikke håpe på for store mirakler.
Fortsatt skjer det mye spennende på forskningsfronten, selv om enkelte forskningsmiljøer bruker mer energi på å krangle enn å forske. Både i Norge og andre land forskes det masse, og det oppdages stadig nye ting. Det er ikke så mye å gjøre annet enn å hvile nok og håpe at de finner noe som kan hjelpe flere snart.
Mot slutten av juli i fjor gikk det virkelig opp for meg hvor mye dårligere jeg var enn for noen år siden. At jeg stadig blir gradvis dårligere, sakte, nesten umerkelig, men når jeg sammenligner aktivitetsnivået for et år siden, to år, tre år, så er det en tydelig endring. Vintrene er verst, så blir jeg gjerne litt bedre utover våren og mot sommeren, men sjelden like bra som jeg var før vinteren. Og selv om noen blir bedre uten at man vet hvordan og hvorfor, så er også frykten og faren der for at jeg sakte nærmer meg den gruppen som stort sett er sengeliggende døgnet rundt.
Jeg var sykemeldt i nesten to måneder, og kom meg på beina igjen utover høsten og tilbake på jobb. Det gir så utrolig mye å jobbe med disse fantastiske frivillige, og selv om det i perioder er utfordrende så er jeg veldig glad i jobben min. Og da vet jeg at når jeg kommer til det punktet at jobben føles som et ork og jeg ikke greier å få til hverdagslige oppgaver hjemme at det er på tide å sette ned tempoet. I vinter hadde jeg tatt flere forbehold og bevisst satt ned tempoet i januar og februar. Men mot slutten av februar begynte ting (jeg) likevel å falle sammen. I skrivende stund har jeg vært sykemeldt i en måned, og er det ihvertfall i to uker fremover.
Det første som skjer når jeg begynner å kjenne på den virkelige utmattelsen er frykten. Frykten for å miste hverdagen min, frykten for å bli verre, frykten for å ikke kunne dra på den planlagte ferien, svikte jobben, bli en belastning for familien... Når kroppen verker og utmattelsen virkelig slår inn så mister jeg all form for mestringsfølelse og mening i hverdagen. Men jeg vet også at bare jeg får NOK hvile så er alt lettere å takle. Jeg må bare justere aktivitetsnivået. Igjen. Kutte ut litt mer. Gå kortere og færre turer med hundene. Finne flere mulige måter å avlaste hverdagen på.
Etter noen uker med sykemelding har jeg fått hvilt nok til at jeg ser klarere framover. Jeg har søkt NAV om el-scooter for å kunne ta hundene på tur. Søkt kommunen om handicap-parkering slik at jeg slipper å være helt gelé i bena når jeg kommer til fysioterapi. Og ikke minst, sørger for å legge meg ned og hvile mer i løpet av dagen.
Det er noen terskler å forsere, og jeg er forberedt på at jeg framover kanskje må tilpasse enda mer. Så lenge jeg greier å gjøre litt hver dag, og ikke for mye så utmattelsen tar helt over, så takler jeg det greit. Når jeg gjør for mye og tipper over grensene tar det noen dager eller uker igjen før finner roen igjen. Heldigvis er våren i anmarsj, og jeg veksler mellom å gleder meg til den forventede bedringen kommer og å ikke håpe på for store mirakler.
Fortsatt skjer det mye spennende på forskningsfronten, selv om enkelte forskningsmiljøer bruker mer energi på å krangle enn å forske. Både i Norge og andre land forskes det masse, og det oppdages stadig nye ting. Det er ikke så mye å gjøre annet enn å hvile nok og håpe at de finner noe som kan hjelpe flere snart.
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