ups and downs – mostly ups!

Quick update on what i have been up to since my cold…

At the Bank Holiday I felt recovered enough to go into town for a trip out with my partner, as it was her birthday approaching and we wanted to do something to mark the occasion. I felt a bit dodgy in the morning and we did not manage to leave the house until well after two o’clock, but we had a great time! We went to an art gallery (see my post on my energysparks blog about it), then to the new City Library as we had not been inside and everyone was talking about how great it was – and they were right. Then we had a quick drink in a bar and i made the spontaneous suggestion that we should stay in town for a meal (i have not eaten out for many months due to my strange dietary requirements so this was a risky idea not just on energy grounds) so we went for a chinese meal as well! We were out for four and a half hours, and although i did feel quite light-headed in the art gallery and had to frequently sit down, i felt good and even felt ok once we got home, which is almost unprecedented, particularly as i get a bit ill in taxis or with any travel. Of course i have paid for it a bit since (as i was not really over my cold either) and have had a few days of feeling less well, which is why it has taken over a week to blog about it. Still it was worth it and to be able to feel so good and spend such quality time with my partner was a treat in itself.

Since then i have also been a bit creative and made a card – see energysparks again!

Scarborough

Well, i went to Scarborough again, to stay at the lovely Fountain’s Court Holistic Health Hotel. I had a real mixed bag of experience, from euphoria to (brief) misery, but i think it was a LOT more good than bad so i have come home happy.

So firstly, the journeys: they went fine and the disabled assistance was good. I felt a bit wobbly at times but it was easier than previous trips and the two hours on the train went quickly. Even better, i managed to call my “personal chauffeur”, Malcolm (my fave taxi driver) to take me home from the station which was a nice end to the experience and we had a nice chat on the way.

I arrived on Wednesday late afternoon and had a rest and relax, and an acupressure thing called Shen Dao where i sat in a chair and it focussed on upper back neck and shoulders. It did not appear to do much as was very light touch, but it was like a 20 minute meditation really as the sun was shining into the room and i could hear the fountain in the garden and it was deeply relaxing. After eating and resting i felt pretty good and went for an evening walk to the park which is next to the hotel and watched the sun setting behind the trees from a bench. There were canada geese, a black swan, a tern, gulls, pigeons and some fluffy ducklings, as well as lots of people having an evening stroll to watch. It was very peaceful, and i was pleased to feel able to pop out after travelling that day.

Thursday i had a great day. I had a little lie down after breakfast then made myself go into town (i could have had a proper sleep but it was so sunny and i did not want to miss the lovely weather). I headed for the shops as i had yet to see the high street despite two previous visits. I have been in need of some pyjama bottoms for ages (as i do live in them!) but rarely get to shops and thought Scarborough might be good as the shops would be more compact as it is a small town. I went into Debenhams and got a pair that are perfect for just a tenner and it only took a few minutes to find them, try them on and purchase them! I sat on a bench with a sense of satisfaction and acheivement – one of my main aims for the holiday done. I also had a feeling of how unbelievably easy it was to “pop in” and get them, and how it was no big deal in the end (i didn’t feel too dizzy even when the shop assistant told me a long story about her boyfriend while i was paying)… such an easy everyday thing for most people, yet so rare for me for be able to do it. I felt lucky to be feeling well at that moment, but sad that such simple things can be so often impossible.

I had more of a wander along the street and popped into a couple more shops then rested on benches, and then i came to the cliff top and looked at the fantastic view over the sea. There was a lift there down the cliff to the beach, which i was not planning on going to, but the lift itself looked fun as it was really old-fashioned with a turnstyle entrance. Inside it was like a little tram and had long wooden benches.

It was 60p and only lasted a few seconds but it was fun anyway. I crossed the road and sat on the beach for a while and watched the donkeys before calling a taxi to take me back to the hotel for lunch.

I had to eat all my meals in the hotel as my diet is so limited there really is nothing i can buy and eat out apart from nut/seed snack bars (which i had with me for emergencies/travelling).

So i had some lunch then had a deep sleep before my reflexology. She has given me reflexology every time i have visited and said my feet seem much less clammy and cold than before and that i look/seem better in myself as well, though she said i look better as i have caught the sun a bit. It is nice that she can tell i am a bit better. My feet still get cold and clammy and it is summer but i do think it is better – the Midodrine must be helping my circulation to my feet. The walk around town probably got it going too!

I talked to other guests when we ate and spent the evening in my room. It was a good day and i felt good.

Friday
Did not sleep so well and had no bowel movement in the morning (the reason i am telling you this will become clear!). I had bad stomach pains and felt really like a zombie. I lay in bed all morning kind of half asleep, did not feel up to eating much so just had some soya yogurt for lunch then some rice cakes and honey later. Went back to bed again then made myself get up and got into the hot tub outside mid afternoon, which did make me feel a bit better/more alive and it was good to feel i was doing something. It had rained really heavily since the evening before and was just easing off to a drizzle which was refreshing while in the warm water. I had another lie down, then had a massage and felt a bit better and ate in the evening. The hotel owner washed all the oils out of my hair and i just rested for the evening, hoping that on my last day i would feel better.

Saturday i woke up and felt ok. I had breakfast and then had a very bad upset stomach and was on the toilet for a couple of hours in a lot of pain. I took some medication (i was prepared for such an event!) and it did stop but i felt absolutely drained of all life and energy. I drank lots of water and mint tea. The hotel owner could only make my lunch between 12.30 and 1pm and i was not ready to eat really but knew it was a long time until eating at 7pm and that i would not feel any better if i didn’t, so she made me a small jacket potato with some grilled halloumi cheese on top as that was what i fancied. It did make me feel a bit better, but i could hardly sit at the table to eat it and went right back to bed again.

I was very disappointed by this point as i felt there was little chance i would make it out of the hotel again. As great as my little walk in the park and Thursday’s trip into town were, i did not want them to be the only good points of the holiday.

I woke up gently and did feel a little stronger. I decided to get washed and dressed and see if that felt like too much effort or if i was ok. I did feel ok, though a little shaky, so i decided to go out again. I got a taxi to the Art Gallery, as i thought it would be small and have lots of seating (there was not so much seating but it was managable). It was a bit disappointing actually, so i decided to walk a little again.

Walking felt quite a lot more difficult than it had on Thursday but i had a few bench rests. I tried to look around a shop but there were no seats and i felt awful so i sat in a cafe and had another mint tea. The music was a bit loud but the seat was so good i stayed a while. When i felt a bit stronger i left and walked down a steep hill past an art gallery that i had seen on a previous visit when it was closed. This time it was open! I went in and had a look around – it was packed with interesting pottery, wood turning, jewellry, art and paintings. It included an exhibition by Yuki Snow, which i was impressed with. I bought some postcards of her work (a picture called Hope which obviously i was drawn to, as i am very interested in the concept, as regular readers will know! Also it features a bird, see my other blog for why that matters to me… click here to see the Hope picture!) and a present for my sister’s birthday, which i was very pleased to find as i was a bit stuck about what to get her. I had a long sit on a low seat, leaing on the counter while the gallery owner wrapped my things and wrote my receipt and that was very welcome! I continued down the hill and sat on the beach again. I stayed there for well over an hour, maybe two, and it was lovely. It was quite cloudy and overcast when i sat down and as i sat there it slowly cleared up and got warmer and warmer. By six thirty i had to leave to get back for my meal and i really didn’t want to as it was beautiful! I was out about 3 hours in total which is a lot for me, but sitting on the beach was so relaxing i though i may as well be there as lying in bed so i just stayed. On thursday i was only out for just over an hour so i was pleased to have been out for so long! I had taken an extra half of a midodrine tablet at 4pm as my previous dose was wearing off and it was just when i needed it, and i think that really helped.

I went back and ate, then went up to my room and packed and got my (new) pyjamas on and got into bed. It was 9pm and i felt better than i had all day, and had a really “itchy feet” restless feeling which i did not recognise from recent years - there was nothing on tv and i did not know what to do. I did not want to make myself feel bad for the journey the next day but also i felt that i would not sleep unless i did something as i actually felt that i had energy to burn! So odd, as i never feel like that… maybe it was the extra midodrine!

So, i got dressed again and went for a walk to the park. I wanted to climb the hill in the park to see the garden at the top which everyone says is beautiful, but the gate was closed. I continued walking and went to the beach!

It was a downhill walk and it felt so easy and natural; i cannot remember feeling that walking felt so normal for a very long time. I thought “this is a short walk” and i could see that this was a short walk for most people, and it felt short to me, despite having not being able to even consider it before.

When i turned the corner onto the beach i saw the cliffs with the castle on the top, bathed in a pink light of the sunset opposite, and it took my breath away. (This picture does not do it justice!)

I was so happy that i had been spontaneous and had come down to the beach. The water was a beautiful metallic blue. I walked to the water line and rolled up my trousers as i was filled with the urge to paddle, but on putting a toe on the cold wet sand i thought again. I was concerned that i did not want to ruin feeling so good by freezing my lower legs when i had an uphill walk back again to go, so i played it safe and rolled my trousers down again! (felt a bit silly and hoped no-one was watching me!). I did not walk on the beach but just gently kept moving rather than standing still to keep my blood moving in my legs. I stayed a while until the light was fading and i set off back so that i was not walking through the park in the dark.

The hotel owner had told me that there were bats in the park, and i had not seen any on the first evening, but it was darker this time. I could not see any as i walked, and paused on a bench for a minute just in case, as i thought that seeing some bats would really top off the holiday. As soon as i sat down i saw one! There was just one, but it was really big. I first thought it was a bird, but it moved in a batty way and when i looked closely i could see it’s outline more clearly. It was flying around for a while catching midges (i got bitten twice while i watched) then disappeared.

 

I walked back to the hotel and i was on such a high, truly buzzing with happiness at the lovely evening and how good i felt walking. It was so amazing and i think all the more special as the day was looking so bad up until mid-afternoon: what a contrast! I never would have thought it was possible to feel so good after such a bad start to the day. I wanted to tell someone about it when i got back but everyone was in bed, so i rang my mum and we had a chat for a while, which was really nice. I took a sleeping tablet and although it took a while to kick in i did sleep well, although i woke up early, as as soon as i opened my eyes i remembered the great evening walk and was smiling and excited again and could not get back to sleep! I did go back to sleep for an hour after breakfast and felt ok on the journey which was a relief.

I have not felt great since getting home, my stomach issues have settled down a bit but were making me feel quite queasy the day after i got back, which is not something i feel much usually. I am starting to feel better today though (wednesday) which is pretty good and quick in terms of payback so i am happy about that too.

I think things are slowly changing for me – although it is very hit and miss. For a long time i was not having any times where i felt really good, even for a short time. I was not able to overdo it, as i had no reserves of stamina to draw on (or doing anything was overdoing it!). I feel that i have a bit more to work with these days, a bit more variation, which if carefully managed could really improve my life. I hope it is the Midodrine that has made these last few weeks easier (rather than a random blip) as that means things may continue to slowly continue to improve… I feel i am getting some Hope back.

August will be a busy month with visits from my Mum (my staycation!) and from a good friend who lives in Barcelona. I really hope to have some good energy at the right moments!

Getting all creative!

I have started something… check out the last two posts on my creative blog for the details… (birders welcome)!

Holiday!

I am back from my week’s holiday and i can say it was a successful trip

We went to the Holy Island of Lindisfarne, which is right up in the far North East of England, just a few miles from the the Scottish Border. It is literally an island and is cut off from the mainland by the tide twice a day. It was nice to feel cut off from the rest of the world by the tide, and also by the lack of internet access. It felt like a retreat from my usual life and a chance to do things that i do not usually get to do.

Things i wanted from the week were:

1. to spend more time outdoors and feel part of the landscape, not just be a “tourist” passing by in a car, as i often do these days
2. to experience being outside at different times of day, as i usually only go out in the middle of the day (if at all!)
3. to take some good photos
4. to have some fun!
5. to go on a pub crawl! (As there are at least three pubs in the very small village).
6. to learn more about the Lindisfarne gospels by going to the Lindisfarne Centre on the island
7. to do creative things (painting/drawing etc)

So, which ones did i manage?

Well, i did most of them…  i did not get to the Lindisfarne Centre, though i did read a bit about the Gospels and the history of the Island in books that were in the cottage we stayed in. I did not manage to do much creativity either – i wrote one haiku (see below), but there was not energy or time for other bigger creative activities after walking about the island a bit and going out for occasional pub meals, and a trip up to Scotland to a craft centre and tiny fishing village and sleeping and resting between each thing. Also i did not manage a “pub crawl” as such, though i did go into several different ones. Seeing as i don’t (can’t) drink alcohol it would not have been very authentic anyway…

I was really pleased to do some walking around the village and also along the shoreline and harbour. The shops and pubs were just metres from the cottage, which made little trips out to them manageable. I walked quite far on a couple of occasions and it was so nice to feel the ground under my feet, feel my body “working”, see the lovely views, take some photos and feel connected to the landscape, to be in it and part of it, in a way that only “walking it” can do for me.

I did not always feel great by the time i got back and i think i am still recovering from the longest walk i did on Thursday, and it is now Sunday! But it was so worth it and i had to seize the opportunity while i was in that beautiful place. It seems that, try as i might to change, the things that give me most joy are still the things i used to enjoy as a “well” person. It was a treat to be able to do it, but i wish i could find something to replace that with for it’s therapeutic & mood enhancing benefits, enjoyment and buzz that i could do almost every day, as i used to go for a walk all the time.

On that big walk i felt well and my body behaved itself and i did not feel any POTS symptoms really, despite being upright (with regular sitting rests on benches) for about an hour. I often stood still for taking pictures and it was so nice to feel good, reasonably strong and able. Although i have felt that i overdid it and am still recovering energy-wise, there would be no way i could have managed that without the POTS medication, as i was rarely able to walk for more than five minutes before and any movements were slow and so much effort. I now find that sometimes, if i pick the best time of day and have had enough rest etc etc, i can move in quite a normal way, get up from a chair quite quickly and walk at a reasonable speed, at least for a short time. That is really nice, and gives me some hope for having some nice wanders about this summer. I miss wandering!

I climbed(!) a small hill to take this (and many other) pictures. All these photos are just using my phone as i have not got my films developed yet. I hope there will be some better ones to come!

One of the main highlights of the week for me was when we went out in the evening and sat on a bench overlooking the castle in the dark. We took the torch from the cottage which was useful as there was only one street light on the way! It was very cold so we wrapped up well. It was really quiet and there was no-one around. We sat on the bench and looked out to small lights on the water, out to sea and along the coastline. There was a bunch of flowers tied to the bench and the cellophane rustled in the breeze and we could hear the water lapping gently at the shore just a few feet in front of us (though we could not see it!). The best bit was the castle. We could not see it, but every minute or so it was lit up from behind by the light of a lighthouse which was out of sight behind the castle mound. The light was green and not very bright and we could just make out the outline of the castle before it disappeared back into the darkness. I wrote a Haiku about it:

Illuminated

Dark castle mound: back-lit by

Rotating green light

Obviously i could not take a picture of it, as it was far too dark but now the image is cemented into my mind. You will have to imagine it too!

After the success of the evening walk, a few days later we tried a dawn walk. I set my alarm for half past six and out we went back to the same area. My body was not quite so happy about that and the dawn was grey and not very inspiring! I was hoping for a glorious sunrise but you can’t win them all… here is one picture i took on my phone once it got light enough that morning just before going (crawling zombie-like) back to the cottage for some breakfast then back to bed.

 It was often cloudy during the holiday, which was a disappointment, as it limited when i could take good pictures but the sun did come out on my big walk on Thursday so i can’t wait to get the films developed and see what comes out!

I feel really happy that i managed to do so much while away, and coped with the awful bed and unsupportive chairs and being away from all my other home comforts quite well too. It took a little while to relax into it but i really feel better for having a change of scenry and a break from the usual routines. Travelling anywhere is such a challenge and it doesn’t always work out very well, so i am so pleased this was a success!

Offline and away!

I know, it’s not like i have written much lately anyway, as this week has been a mixture of very busy and also recovering from the Tribunal, but i have come through the other side just in time to say that i am “off” again, literally away this time. I am going on holiday and away from my computer and internet access of any kind. Actually it will be a nice surprise if my mobile phone works!

I am not going far but far enough and can’t wait to go! To smell the sea, and take in some new scenery. I have packed 3 cameras (plus my phone which has one) as well as various art materials and i am all set.

Later! Hope you all have a good week,

Ashy xx

New Dose – one week later…

Well, this week has not been good. I have not been really bad, but not well enough to do anything much for long. Some days have been as bad as ever, seeing a return of bad upper back pain and regular headaches among other things. I have had to sleep a lot and have just not felt much sparkle…

Yesterday i went to see the CFS specialist again. He suggested it may be the medication causing this down-turn as he says it is generally not well tolerated (The POTS specialist did not say this to me, who is right?). Up til then i was thinking maybe i was fighting the nasty virus my partner has had all week, but i take his point. Maybe i just didn’t want it to be that, but thinking about it, it makes sense. I have had more problems with temperature regulation again, including goosebumps when warm (particularly on my thighs) and cold feelings on my head when my body is warm. Also a difficulty getting warm, followed suddenly by being over-hot and sweating. Goosebumps is meant to be a side effect, paricularly on the scalp so it kind of follows.

I am going to give it another couple of weeks to see if things improve as my body gets used to the new dosage as it was three weeks before i was sure it was having a positive effect intially. If no better i will ring the hospital and see what they suggest. After the initial success, i don’t want to give up on midodrine too early.

Although i am not hideously ill, i feel pretty much as i have pre-medication which is disappointing. What seemed “normal” has now become “worse than expected” , as i got my hopes up, which is not a good way to see it mood-wise. But i am well practiced with patience and i am trying to just see what happens. I really want to go to a lecture on monday evening that the POTS specialist is giving, and it is my birthday during the week so would like to be able to do something outside the house next weekend to mark the occasion. What we attempt will depend how this week goes… my short-list is:

• Lunch/afternoon tea at a fancy hotel/country mansion type place up the road (easy ten mins drive for my partner) where i have not been before
• Go into town to the arts cinema, with optional meal out afterwards if stamina allows
• Go to National Glass Centre in Sunderland – this is a very long shot and the meds would have to kick in big-time as it is quite a drive and would need to be pushed in wheelchair etc etc – but no point ruling it out til the time comes as I have wanted to go there for years and have never been. There is a really interesting-looking exhibition on called Beautifully Crafted (see above link).
• Also in Sunderland are the Winter Gardens, which again i have not been to, but i could never do both things at once… it is winter though so must be a good time to visit

Or i may have other inspiration in the week, who knows! I hope i can do something anyway… If not i could become old AND grumpy overnight!

Also, to throw a spanner in the works, my partner has been ill with a virus all week and is still not tip-top, so it will depend on how she is doing by then as well… fingers crossed… again!

New Blog!

Newsflash!

 

I have started a new blog which is focussed on my creative activites… It is called Energy Sparks: Check it out!