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I have had a pretty good summer! As I said in my last post, I had a great visit from a friend. I then had another friend come for a week and although I felt quite awful at times and had lots of sensitivity to noise, light and sensory overload as well as other things, she is the kind of friend who made the experience more pleasant. She just kept me company and we still had fun. It is hard to be around people when symptoms are severe so I was so grateful to have someone so chilled out and who knows me so well to be here with me. After that I had a few days to gather my self, my strength and my essential belongings before heading up to Scotland for a week. I was really surprised that although the travel was hard (and I slept literally the whole day after we got there) I managed to go out briefly three times during our stay and really enjoyed the things we did and saw. After that we again had a few days break before my partner went away with work, and my mum came up to help me cope with my daily needs and keep me company. We had a good time, and it felt quite busy despite only going out to a doctor’s appointment one day and a quick trip to see the sea and sit in a cafe another day. That was last week and this week we have the builders in – they may still be here next week actually. So it has been really busy!

I was a bit daunted by this summer before it happened. I worried about how I would feel, whether I would be able to enjoy things or if I would feel too bad to make the most of things that were happening and feel I was missing out. I have been pleasantly surprised by what I have done and how I have recovered quite quickly from each thing. I have been very careful, of course, but think my post-exertional malaise is not as severe as it used to be, particularly looking back to last year. I do get a flare up of symptoms, more pain and neurological symptoms rather than fatigue, per se. The sleeping all day the day after travelling was really unusual for these days, though so was such a long journey. It took three hours.

So here I am back at home and contemplating what I want to focus on over the next few months. Some things have come out of the GP appointment which will take some time and focus. I will talk about them in another post. It has been interesting to be without a computer, or accessing it less over the last couple of months. I really want to keep my blog going and interact with my online friends, but I also want to be online less and do more creative things. I did not really miss the extra internet hours and think I need to set some boundaries for myself so that I am only online at certain times of day and for short periods. I doubt I will miss out on much and it will focus my attention to the important stuff.

I really want to actually DO more creative stuff rather than just think about it and I need to make some space. The health stuff is going to take some time each day, so I need to make a plan! I would love to go with the flow more, as I expect I have expressed in previous posts, but with such limited functional time each day it is really hard to do that. I also find it really hard to remember what I need to do, so unless I have a plan I use my energy on non-essentials and forget the important stuff. Not good and does not give any sense of achievement. I have a new creative project with a friend so I need to make time and space for that. I am quite excited about it!

I subscribe to Sustainably Creative, by Michael Nobbs who is an artist living with ME. He is trying to earn a living through creative means in a way that fits around his energy issues. He has helped me to think about how I can fit in more creativity and work out what is important for me to focus on. He sends out regular digital postcards, an illustrated newsletter and daily podcasts which I really enjoy. This month new members get a free copy of his latest book! (He has produced others too). Whilst I do very little and could not contemplate trying to earn money from creativity right now, it is really good for me to do little bits and bobs and feel some sense of identity as an artist, not just as an ill person. While the latter wins out most days, the creativity and ideas are always there bubbling beneath the surface, even if I am not doing anything about them. It is good to see how others are trying to navigate these issues.

So, while I am back to the old routines in many ways, I hope to shake up a few and make some small changes, hopefully for the better.

Hello all,

I am not sure what to write about today, or how much to say. I am bored of writing how I am, which symptoms are bad and so on, though I know it serves a purpose for me in terms of tracking my symptoms and health, which is one of the reasons I do blog. I am bored with it though, and so it seems is my partner, understandably. We want to escape the never-ending discussions of how I am, which parts hurt and so on. But how? I honestly do not think it is possible.

I do not need to tell you readers who are also ill and living with other people the difficulties of being in any relationship when there is an unwanted entity (the illness) hovering around affecting everything we do, or more usually cannot do. Things are ok, and we are coping but I am just feeling a bit emotional at the start of this year.

As well as wanting me and more especially my partner to have a break from it all, I am deeply worried about a friend of mine who is in hospital. I have heard from her dad that she has had an emergency operation and is very unwell, but nothing for a few days and I cannot help but think about her and her start to 2011. She has not even been able to open her Christmas presents yet. She is on my mind a lot.

I think I am also just in recovery from going away at Christmas. I feel a sense of achievement and adventure at having gone away – I spent a few days with my partner’s family. It was good and I am very glad I went in many ways. I was made to feel really welcome and they tried really hard to accommodate my needs and it was nice to feel part of something but it was also pretty hard for me at times.

The main issues were the travel (which took 4 hours on the way there and 3 on the way back; even as a passenger that is really a lot for my poor brain to cope with. I find it very challenging neurologically to be in motion and to have such a lot of visual stimuli rushing past at the same time); the heating, which despite other people saying they felt cold was on really high and it was the hottest house I have been in for a long time (which obviously is really bad for me in terms of POTS as it means my blood pools more easily and less gets to my brain which makes me feel worse and have lower stamina and more neurological symptoms, like tolerance of noise…); and also the noise!

When there is noise my stamina is very limited and the combination of Xmas music on a loop and/or a tv turned up loud for some of the family who can no longer hear very well (and refuse a hearing aid) as well as the conversation of up to twelve people on top was at times hard to bear. Added to this was the noise of a house full of people when I was trying to rest, especially when a few drinks had been had, despite my ear plugs! People really did try so I am not blaming them, it’s just that normal festive behaviour and this illness do not mix. It is not like everyone should sit and shiver in several jumpers in silence just so that I can “do” Xmas!! It would not be fun for me or anyone else that way.

Overall it was a successful visit and I would take on the journey again when things would be quieter and hope that perhaps I could be able to leave the house when there next time to explore the city a little. It did feel strange to just be in the house all the time and not be able to situate it or explore; which seems ridiculous as I rarely go out to explore my own city, but when you go somewhere new I suppose you feel it more keenly that it is the normal thing to do. I know there were art galleries within a ten minute radius, and that hurt!

I have been feeling a bit stir-crazy actually and the trip away almost added to it for the reason given above. It gave me a sense of adventure if anything! I have not left the house much for a long time, other than for appointments, and the weather has been a big part of this. It has been just freezing with snow and ice everywhere – hardly wheelchair-friendly. I did go over to see a friend before Xmas and that was really nice, though it felt so surreal and I realised it was nearly a year since I had visited her home. She has had to visit me most of the time in the last year. Another reason is that my partner is just so busy and there is no-one else to take me out. I really find it hard to go anywhere without my wheelchair and that means being accompanied. I need to perhaps just take a taxi sometimes and sit somewhere interesting and comfortable for a while, but finding somewhere comfortable (in terms of chair, but also noise etc) is quite tricky.

Good things already planned for this year are a lecture about printmaking at a local university at the end of March. It is just an hour so I am going to give that a try if I can. Also we have booked tickets to see Iron and Wine in concert, which is also not for a while, but something to look forward to. Some of the most memorable and best things I did in 2011 were going to concerts, which has become easier now that I can sit in my wheelchair, so I hope to keep finding good people to see this year. It is great to go out with my partner and share such experiences with her. We don’t do enough fun things together.

It is my birthday this month and some time has been kept clear to do “something”. It is not yet clear what I will be up to doing, or what the options are but I am looking into it!

I hope to continue with my art immersion at home (see blog post on my creative blog) and finish the painting I am working on and move on to the other many creative things I want to work on. So many ideas, so little energy and ability! Never mind, art is a good distraction from illness. I also want to read more. I have got a Kindle for Xmas, though I had it early, and I am really loving it and how much easier it is for me to read with than a real book.

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!)
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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.

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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, i said i would go out of the house somehow to mark my birthday, and i did. We decided Saturday was the best day for a number of factors (weather forecast, likely traffic due to Newcastle v Sunderland football game on Sunday etc), but i woke up feeling very dodgy and my partner’s assessment that i looked “a bit pale”, when i looked in the mirror, was a hilarious understatement. (Good to see those low blood pressure tablets working… NOT!). So, we crossed off the most ambitious option which was to drive to Sunderland to the National Glass Centre (best done in daylight as never been before and it was already late morning) and i got back into bed. I managed a bath in the afternoon and booked a taxi for 4.15pm, as i was determined to do something out of the ordinary. We went to the Laing Art Gallery in town (Newcastle) to quickly (It closes at 5pm!) see Tracey Emin’s Seagulls. I was happy to find them near the entrance and there was a sofa to sit on while looking at them.

I am not really a fan of hers, but i am conceiving an arty project of my own about birds (I feel it may be customary not to talk about things before you even start them, and for good reason, but hey! i like to live on the edge), which have taken on a greater significance for me recently as my illness has been more severe, so i thought in the name of research i would see what a “proper artist” was doing… We did not stay long and really there was nothing more to see than looking at the picture on the website (see link above). What really struck me was that the seagulls, all made from the same cast so pretty much identical, looked more like PIGEONS! To me the beauty of a gull is in it’s crisp edges and it’s angular elegance in the air; these were all rounded and puffy looking… and to have the same words on each one as well? It could have been more interesting to my mind, but what do i know?

So anyway, we then took a short walk to a bar as we had an hour before the restaurant opened. Firstly the only seat we could get were high bar stools which wobbled precariously and were set next to a wobbly table and i felt all “at sea” and not good at all. I do best with a seat with a supportive back, but this was a whole new level of discomfort! Luckily some people moved and we got better seats and the lights were less in my eyes there too.

Then we took another short walk to the bus stop to get a bus down the hill to the quayside. We did not have long to wait and got to the restaurant no problem. The meal was nice. It was Indian food from the Kerala region. We enjoyed the starters more than the main in the end and it was nice and quiet with only one other table occupied when we arrived, although it did fill up by the time we left. We could have got a taxi to come to the restaurant to take us home but i wanted to walk along the river just a little as it is a long time since i was there, and it is nice at night. So we walked a little bit and got a taxi home from the taxi rank.

sage-being-32

 

 

quayside-321

When we got home i very quickly deteriorated and had to go and lie in bed for a while, which put a bit of a dampener on things (i walked into the bedroom and looked at the bed which i only left about 4 hours before and it looked like my enemy, which it does not usually) and i was disappointed, although i knew i had pushed my luck quite a lot considering the day started so badly.

I have slept most of today so far and i don’t feel too good now since writing this but i am glad we managed to go out, however much of an effort it can feel. I made my partner take some pictures of me (she refuses to have many taken of her although i did get one) to mark the occasion as otherwise i will probably forget what we did by next year, as my brain is not so good on that front at the moment!

All in all i did have a very good birthday, and what made it good were all the good wishes, cards and great presents people gave me. People have put so much thought into them and that touched me a lot and made me feel valued and special to them. I still have not even found homes for them all – yes i got that many!!! So thanks everyone, if you are reading this xx.

birthday-risotto-parsley-32

(Hmm cheesy, green & nice!)

Special thanks to my partner, who always tries so hard to give a sense of occasion even when i am feeling ill, and who made me a gorgeous parsley risotto on Wednesday for my birthday dinner even though she was dubious about the concept, but we both loved it after all!  She got me a digital photo frame, which i love despite never wanting one before i got it and is so nice to have on when i am just sitting quietly, and a love-at-first-sight wool top! Here i am wearing it. Me, aged 32…

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Newsflash!

 

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

ME/CFS Awareness

ME/CFS Awareness

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