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


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:


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!

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

Well, today i am going away for a few days to the Cambridge Folk Festival! I am VERY excited and a little nervous about overdoing it (which is inevitable). We have planned everything to the last detail and packed for every eventuality so now all we can do is GO FOR IT!

I have had quite broken sleep (too excited) but sure i have had more than i think. Will just doze/deep breathe on train as much as possible and try to preserve energy… I am not feeling too bad at the moment. Last week i was like a zombie and could have slept all night and all day (which is quite unusual for me) and this week (until yesterday morning)¬†i have been plagued by headaches but i am hoping that before any new symptoms pop up i can have a few days of calm and relaxed feeling ok-ness – everyone: CROSS YOUR FINGERS!

I have been before as i used to live in Cambridge, it was where i became ill, and i have¬†a lot of very good memories of my time there as a well young thing, dancing the nights away! I didn’t often dance to folk music then but i hope to be tapping my feet a bit this weekend!

I will be back on Monday and will try to say how it went when i feel up to it – i am hoping that even if i don’t feel great all the time that a change of scenery will do me the world of good.

I am taking my holga (camera) and note book and endeavor to be creative as much as possible while i am there! A haiku or two at least ūüėČ

see this excitment building video!

Well, last weekend, despite a bad lead up (see last post), i went to Scarborough!

I had booked it well in advance and although i knew there was a possibility that i would be unable to go when the time came, or that i would get there and just lie in bed the whole weekend i was determined to give it a go. I booked it when in the process of applying for DLA (as felt so depressed i needed something to look forward to), in the hope that by the time the weekend came i would be in receipt of some extra cash, alas it was not so, but it turned out that thanks to the DWP sending me my incapacity benefit form (to reassess my ability to work) and having my DLA medical the week before, i needed it more than ever.

My sister also has ME and has been really struggling lately so i invited her along too and so we had some quality sister time! We do not see each other much as she lives near my mum, over 5 hours away by train for me, which is not something i can do without serious trauma & payback. She had to travel over four hours to Scarborough, whereas for me it was only two, but we travelled the last hour together as at York i got onto her train!

I chose last weekend as i tend to feel a bit more human the week before my period is due (contrary to the rest of the female population, but i like to be different!) so i booked it then and hoped for the best. I could never have believed that it was possible to go from how ill i felt a couple of days before i left to how i felt when i was away. I usually say how frustrating it is to have to take my illness on holiday with me, that there is no escape, which is usually true, but i really felt as if i had a holiday in every way! Of course i was not going out dancing and behaving as if i was not ill – i had a good sleep every day and paced myself as much as possible but i did not have a headache, my legs did not feel too painful until the last day, and my back coped with sitting on the train for two hours much better than i could have hoped for.

We stayed at the Fountain’s Court Holistic Hotel, which i chose because it is a calm & quiet place that offers all kinds of alternative therapies.¬†We both had a¬†Tibetan Acupressure Head Massage the afternoon we arrived and it helped me to relax and shake off the journey¬†completely. I also had two sessions of¬†Reflexology over the weekend¬†and my sister had a Shiatsu Massage and a Hot Stones Massage. I had rung up in advance and had explained that we were both unwell and that we may need to sleep in the day and have peace and quiet and we were assured that we would be well looked after, and we were! We were really made to feel at home. A highlight for me was on the Saturday afternoon after a good sleep we had a hot tub in the rain! We also went to the Sea Life Centre. Sunday was really windy but bright sunshine so i took quite a few pictures as well.

After i got home i did feel less well, but nothing too bad and i feel i got away with the extra activity without serious payback… hurray!

A few days after getting home though,¬†i found out that my DLA application has been turned down and i did feel really down about it that day, and as if all the benefits of the weekend had suddenly gone, but i have pulled myself together, looked at my sunny photos¬†and won’t let the b*****ds get me down ūüėČ

In general i have come away from the weekend feeling much more able to deal with all the things that need dealing with: benefits, insurance company, CBT,¬†medical issues, etc. I know they are all tricky and i still don’t know what to do for the best in¬†most cases, but i have certainly benefitted from having the boost of a change of scenery, meeting some lovely people, feeling really good for a couple of days, seeing my sister (and singing in the hot tub), having relaxing treatments, taking some good photos, feeling that i can cope with a short journey (sometimes), and knowing that there is somewhere reasonably nearby i can go when i need to do it again, which i am sure i will!


ME/CFS Awareness

ME/CFS Awareness


December 2020