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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.

tram beach

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.
scarb34 Donk
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!)
scarb22
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.

scarb28

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.

 park

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!

Well, it is that time of year, after all.

It will be my second holiday as i went to Holy Island (with my partner and dog) in February, which was a great week and did me so much good. See my post about that here. I was only saying recently that a) the year is flying by and i don’t feel like i have done much apart from our holiday and b) if it wasn’t for that holiday i would not have taken many good pictures this year as yet, which was my main resolution for the year: to get out more to photogenic places!

So this time i am off to Scarborough again for 4 nights. I am going to the same place i have been twice before, once with my sister and once alone. This time i will also be alone. My partner is going to Spain for work reasons and i really struggled last time she was away, and had quite a lot of “payback” in recovery from being alone, so i thought i would go away too. At least this way i can have my meals made for me, have no washing up to do and hopefully have some fun as well along the way. If i am going to overdo it, i may as well have some fun!

It was/is a bit of a gamble. I had the idea a couple of months ago and was operating at such a low level health-wise then that i thought there was no point in going, as i would find the journey too hard and not be able to leave the hotel at all. The last few weeks though, apart from the odd blip and a series of very bad headaches, I have been feeling stronger and i think now there is a good chance i will deal with the journey ok. That is, as long as the disabled assistance turns up WITH the wheelchair I have booked to help me change trains, unlike they did at one point in my journey last time i went – “they are all being used” was the excuse… hmm i only booked 2 months ago!!

I also think because it is summer this time i will be able to sit outside more easily. Last time i only left the hotel once and went for drink in a pub as it was December and there were not many warm options. This time i can sit on the beach, in the park, or just in the garden at the hotel and that will be much better. I am taking a couple of cameras and a notebook and hope to be creative too (maybe a haiku or two!?). (i know i am repeating myself from a previous post here, but never mind, it is worth repeating myself when i am excited!).

I have been able to read more lately as well, as my eye muscles seem stronger and my blurred vision is less regular and my powers of concentration are a bit better too; so i am taking a (hopefully) good book of short stories to read as well: The Winter Book by Tove Janssen (of Moomin fame)… she wrote one called The Summer Book too, but why be seasonally correct?! I have read the intro by Ali Smith (who i admire greatly) and she makes it sound so amazing that i hope the book is not a let down after such high praise!

I can have a massage or two while i am there and hope to meet and chat to some interesting people like i did last time. The hotel owner has promised to help me wash my hair mid-visit and to cater for my odd dietary needs, so off i go!

Wish me luck! I shall catch up with you all next week…

After going to my sister’s wedding and then having the “virus from hell” just over three weeks ago, i have been really struggling… (not that i wasn’t before you understand!) BUT i finally feel a bit better the last few days – back to a level that i can live with longer term – anything less than this is just not do-able. It may only last a few days but it is nice to feel that each day is a bit easier, not that i am actually doing much, but being is easier. It makes me realise how hard things have been when this feels so good! Just a few days ago i was feeling very different, and everything felt like a real struggle but i am enjoying the upturn while i can. So, despite continuing muscular pain and headaches, i am feeling quite positive.

Due to being otherwise engaged i was a bit late starting on my Just Four Quidactivities, but last week i managed to get my JustGiving pages set up and then email everyone i know to tell them about it. I optimistically set my target for the year as £250 for each of the two charities (as you have to set a target) but i did not think that i would make it in a month of Sundays…

Amazingly i have already exceeded my target for the Ramsay Research Fund and my ME Research UK page is starting to look at bit better after my Dad thought it needed cheering up and made a second donation! So far I have raised £450 in total and I am so chuffed and so grateful to everyone and their generosity. I really thought that a few people would give a tenner (which would have been great), but i have had some HUGE amounts given. I really means a lot and has cheered me up hugely to think that something so great can happen from a relatively small action on my part – all i did was ask! True, i cannot run a marathon so should not be expected to “do” anything like that and also i would not be comfortable asking again and again for money; but i am so surprised and encouraged that my small actions have created some money and potential positive change for the future for people with ME.

I would encourage anyone who has some family/social contacts but who doesn’t think that there is any point, to give it a go, you may be surprised who donates, as i have been. If they don’t, well it doesn’t matter – you gave it a go! I think it maybe makes some people feel good that they can do something useful/practical to demonstrate support for me and my situation when there is nothing much left to say, although maybe i am reading too much into it.

If it is energy issues preventing you, then feel free to base your justgiving pages on mine (see the links to them on the left of my blog) and i will send you a copy of the email i sent round to people too if that helps (just ask). Thinking what to say can be the most time and energy consuming part.

So anyway, it is nice to have good news!

More good news is that i have booked a few nights in Scarborough again to the same place i have been before. Last week i was thinking there was no point as i wouldn’t be able to leave the hotel, the travel would be a trauma etc etc but this week i feel that it is do-able and that i won’t have a good time if i don’t give it a chance. SO let’s hope this better feeling last until i go in a month’s time!

Last time i went i only left the hotel once for a cuppa on the harbour front, but i was only just starting to take Midodrine then and my POTS symptoms were a lot worse. Although i still feel bad when i stand for any length of time, i am not living in fear of imminent collapse as much these days and can stand and walk for longer (as long as i am generally feeling ok – some days or times of day there is just no point trying is there?). Also that was December and this will be July so i hope to be able to sit in the park, on the sea front etc and be outside a bit more in a gentle and relaxed manner without freezing myself half to death! So i am looking forward to a summer holiday. It may not seem exotic to others but it is as far as i can possibly venture these days, and it is MINE!

Other news is that i have ordered the urine test “for ME” (see previous post) and am stopping taking Kefir from now until it arrives as probiotics can apparently affect the results… so we shall see if i have ME ha ha ha.

Well, so much has been happening… and now at last time to relax a bit and report back…

Last weekend (end of November), i went to Scarborough! On my own!

Well, it is a two hour train journey and i booked disabled assistance for the first time. It went well and there was (usually) someone to meet me with a wheelchair to push me between trains and to carry my luggage as well. There was no-one waiting for me at Scarborough station, but my train pulled in right by the exit and there was no queue for taxis so i managed fine. When i arrived back to my home station there was a man to meet me but no wheelchair, as they were all in use… not really good enough when i had booked two months in advance! It was not too far to walk to the the station exit and he pulled my case for me, but the taxi queue was long so i had to take out my tiny folding stool and sit on it, but keep getting up to shuffle forwards as the line moved along… not exactly comfortable and the reason i booked the chair was to help me get to the taxi as it is standing in particular that is hard for me… as well as walking for more than a few minutes… well nothing is perfect and luckily i was not feeling too awful, but i could easily have been… he offered to queue with me but i told him could go as he was no use without the wheelchair… so i would say 7/10 for service… I was pleased that i could step off the train myself and was not dependant on them coming on to get me as i would have found that stressful, and i don’t think they are 100% reliable based on my limited experience. I will be travelling by train at Christmas as well, hopefully only one way, but a much longer journey and have booked assistance again. I hope it works then as well!

By the time i got to Scarborough i was really drained and felt very weak. I booked into the hotel (the same place i went last time) and could not really take in what was being said to me as my brain was shutting down… I lay down for a while and felt a bit better though. My feet were like ice and despite an hour and a half with a hot water bottle, when i went downstairs for my first treatment – reflexology – my feet were still not properly thawed out! The woman who was doing it said she couldn’t decide if they were warm or not as they felt so strange! My circulatory system is not well behaved.

I had another lie down then ate at the hotel that evening, and got talking to a really nice couple while i ate. The food was really good and it was nice to chat to new people and i really enjoyed the opportunity to be sociable as i find i rarely meet new people and have the opportunity or energy to talk properly.

The next day i had breakfast brought to me in bed (yes, this is a heavenly place) and then had a shiatsu massage (my first ever and really good – she did a gentle version for me which felt just enough to do something but not hard enough to cause any flare ups or pain – afterwards i felt looser and that everything was flowing better) then another sleep. I felt quite good then so i got a taxi down to the harbour and sat outside watching the sunset!

photo343

It was not as cold as i expected (i was well wrapped up) and it was so nice to be out in the fresh air. I wrote some postcards which i got from a shop next door. Once the sun went down and i finished my hot drink i went into a pub to warm up for a bit, (this is the view from inside the pub, of the remains of the sunset)

photo346

then went back to the hotel feeling pleased that i have made it out and about, as i feared i would not be up to leaving the hotel much and maybe not brave enough on my own. See my other blog for another picture of the sunset. I ate in the hotel again and chatted to the same couple which was good. I took a sleeping tablet each night i was there to maximise my chances of having good sleep and therefore good days!

The next day I had an aromatherapy facial in the morning which turned out to be more like a shoulder, neck, face and scalp massage with a face mask thrown in (i could have lived without that bit as my face didn’t seem any different afterwards) but the massage part was amazing and she really gave my scalp and head a thorough going over and as my head is always tense and painful it felt as if it released so much tension and got the circulation going really well. I had a nap, then my Mum came to visit for lunch as she was coincidentally in the area! She drove me five minutes along the road to a cafe and we had a nice lunch, then we drove all along the seafront (north and south bays) to get a feel of the place and see the sun setting again before going back for a cuppa in the hotel. I felt a lot weaker than the day before, and quite lightheaded and became tired quite quickly but it was still really nice. I had another sleep before the evening meal again, which i ate with the hotel owner (Helen) as i was the only guest at this point! It was nice of her to eat with me as it would have felt odd to sit on my own.

Got up the next morning very early for my train and Helen drove me to the station as she had time, which was very kind and gave me a big hug goodbye. It is so nice to know that i have somewhere to go for a change of scenery where even if i am really ill and need to stay in bed i will be looked after :). I felt a sense of independance in managing to go away and largely felt fine while i was there. I wonder if the new tablets for POTS i am taking helped? Hard to tell. I feel it is so important to keep trying to do things, within reason and with careful planning, or i would miss out on so much and get stuck in a rut of thinking i can’t do anything or go anywhere… As my partner went to both Shanghai and New York this year and i was unable to go due to my poor health i felt it was important to try to have my own holiday as well.

Home again:

So then i got back home and have had a crazy week! I have had to abandon all routines, and have struggled to fit in my daytime naps most days, or have had them much later than i would like. I have had to get up early, then stay up for deliveries and post (the downside of doing xmas shopping online), then be in for the dog walkers to pick up and drop the dog back an hour later, then one day the cleaners came after that (after cancelling last minute earlier in the week, so i had already prepared for them and stayed up). We have had men in to fit new doors… well i use the past tense but they are not finished so we still have gaping holes around the new doors letting in a lot of literally freezing air (and probably snow flakes too!). They were supposed to come back the next morning to finish the job but the man’s axle on his van bent from driving on the ice, then was supposed to come the next day and he broke his little finger by slipping off his icy ladder. So fingers crossed (those that can) he will be able to come back tomorrow! Added to this the boiler broke down so we had no hot water (except the shower that i can’t really use for too many complicated reasons to go into now) and no heating except one electric radiator and a gas fire. Add in many drafts from front and back doors not sealed and sub zero temperatures and you get the picture… So i was ringing around, organising men to come and do these jobs, making numerous cups of coffee, fetching things for them and generally doing things i knew i shouldn’t, but did not feel i really had any choice.

Also my partner’s parents arrived on Friday night for the weekend, and the boiler was only fixed in the nick of time! The house was a tip from having the door men in and it all felt like chaos. The visitors left yesterday and today i am just going to do very little and see how my body is… i feel that i have been running on adrenaline for days and i am not sure what will happen next!  Again maybe the POTS tablets have been helping me cope as i have been more active and largely coping… who knows?! I am certainly still feeling POTS symptoms, but i am not sure if it is maybe less severe. I am unsure what feelings of weakness etc are from POTS and which are from ME, so it is hard to judge, especially when my usual routines have been so broken.

Also the boiler stopped again this morning… it has resumed activity after we pressed the reset button, but i suspect that the problem may not be completely solved, despite a new flue fan… i am hoping for an uneventful week once the door men leave tomorrow, what are the chances?

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 😉

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

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