“Holiday” and Virus

Last week I had to move out of our house while two rooms were plastered. To stay would have meant being shut in one room with my partner (who would be trying to work from home and deal with the workmen) and the dog from 8am all day for at least three days. That would mean no bed (the sofa is not actually comfy to lie on for any length of time) and i cannot last a day without lying down, usually twice with at least an hour’s proper sleep… and that is when i have not woken up til about 10am, never mind before 8. Add to that the mess, noise and dust and you can imagine how relaxed that would be. It was not going to work. So i abandoned ship which helped my partner who then had one less thing to worry about/deal with.

A good friend of mine agreed to take me in and i went to stay with her. I took a big batch of veggie stew and microwave rice, microwave porridge, various snack foods etc so that i would not have to depend on her (she would be out at work all day and then busy with her baby anyway, so did not need to be looking after me too). I ended up staying from Sunday evening until Thursday afternoon and i really enjoyed the change of scenery.

I was mostly on my own and apart from the Monday just used my energy and time resting, having baths (daily due to itching issues, that will be another blog post, (maybe) coming soon!), making food etc. It was nice not to be at home where there are always more things to do. I felt more relaxed i think as I could not get caught up in little household chores or other stuff that tends to creep into a day at home. I was barely on the computer (i did not take mine) and watched no TV (there wasn’t one). It was nice and quiet.

The Monday I actually went into town and to THREE shops (and a cafe for a rest mid-way). Yes, what was i thinking? I rested in bed before and after the trip and expected it to be a bit traumatic, but actually it was a pretty good experience. It was something i had been really wanting to do for months but not feeling able. I really could have done with someone to help me carry my purchases as my arms/neck/shoulders get very tired carrying the smallest thing for any time and it was a struggle at times, but as i was very careful in the days before and afterwards i did not suffer too much for my exertion, just extra aches and pains really. I sat down when i could and asked for help as much as possible in the shops and people were very helpful. The great thing was actually being able to go and buy some undies for myself. There are a lot of things that are ok to have someone else buy for you, or to buy online, but clothes are tricky. I really wanted to go and choose my own vest tops and knickers, especially as my skin is so sensitive and itchy i wanted to feel them and see how scratchy/bulky the seams were, and so on.

I also bought a pair of jeans! They are not a perfect fit so i will need a belt with them (my hip to waist ratio is a little ridiculous so this is expected) but i am so pleased to have found some as who knows when i will next be able to go clothes shopping and my existing ones seem to be getting a bit thin in places (you only really need one pair of jeans when you live in PJs, but it is so distressing when your jeans rip and you have no replacement at the ready).

I really think it is about my third visit to a clothes shop this year, i cannot actually remember the last time so it may be even less. It has certainly been a while and it was nice to be out and about, “gal about town”, watching and seeing how life goes on usually without me seeing it. A lot had changed in the two streets i always go to and my memory of where things were was a bit wrong! I still feel like a visitor in this city after 8 or more years of living here. The last time i made it into town was the August Bank Holiday when i went to the art gallery, which was a great day and i am still remembering it fondly!

My friend lives nearer town than i do so it was really easy to get in and out and also she lives near some local shops so i went out briefly for some fresh air on other days and sat on a bench, went to a cafe and a shop as well and it was so much less effort to have it all right on the doorstep. It made me think about what things might be important in choosing where to live if we move house. It is interesting to try out other people’s houses!

Unfortunately on the Thursday afternoon once i got home i felt surprisingly ill and thought maybe i had overdone it more than i thought, so i spent the afternoon in bed. I got up for the evening but kept having bad dizzy spells even when just sitting quietly which is rare now that i am on medication for my POTS. I felt pretty bad but thought it was just the usual payback. I went to bed and slept a bit before waking up and feeling queasy. At 2.30am i started to be sick and this continued until there was nothing left in me at about 5am. There were breaks in between bouts but i felt so bad that i could barely move or lie down as i felt as if i could be imminently sick at all times. It was not a fun night. I eventually got a couple of hours sleep at about 8am but barely ate on friday (even drinking water was hard) and still had little appetite all weekend, though i gradually built up the amounts i ate and no longer felt that i would be sick.

During that night i was obviously up and down to the bathroom and think i was having POTS symptoms as well. My heart was beating very fast and my arms and legs kept getting pins and needles. The next day i did not take my POTS medication until i had eaten something. I really did not want to put anything in my stomach in case it triggered more sickness. So on top of the weakness and dizziness of being so ill i also had POTS symptoms, all in all it was BAD. I should have taken my blood pressure just to see how bad it was, but was too ill to think about that until later!

So that’s what you get for going out into the world… exposure to viruses! I kind of expected it, i just hope it does not knock me back for too long. From experience this year these things seem to really take their toll long-term. I hope to have some energy by Christmas, if only to digest some seasonal foods! At least i have lost a few pounds through all this, so i don’t have to worry about eating myself out of my new jeans

It is now Tuesday and i do feel much more back to my “normal”, if not very lively. I am still a bit achy (being sick uses a lot more muscles than you would think!) but pleased it only lasted as long as it did. After being away from home, then out of action i do feel i have various things to catch up on, not least the blogging i put off last week to save energy for my trip away from home! Ahh well, hardly that important… you may get some old news at some point!

Christmas Present Dilemma

The last few weeks i have been gradually starting to think about Christmas and how to manage it, and as i have continued to feel not so good lately I was feeling a bit daunted by the whole thing. So I thought about ways around it and came up with this. I have sent it to everyone who may consider giving me something.

I am just posting this here as other people with ME may feel the same way about Christmas and seeing that i am doing this may help you think that there are alternatives that might not hurt everyone’s feelings… I have had two responses so far and both were entirely positive, so i still have one family member and one friend talking to me!! phew!

To all my lovely friends and family,

 As most of you are aware, shopping in shops is not something I can do, and last year I did all my Christmas shopping online. I did, however, find it was still a lot handle as I have to limit computer-time and I also find organisation and making decisions about what to get for people quite exhausting when my brain is not working so well. The hardest part though was receiving the deliveries, as I cannot stay out of bed all day nor can I jump up from bed and launch myself down the stairs without risking falling over or at least making myself feel very dizzy and faint. The memory of last year has made me question what to do this year as I have been going through a bad patch and just cannot face it. ***** says that no-one will mind if I just don’t get them anything, but I was not comfortable with this, mostly because when other people start giving me things I will feel so guilty, and it would feel like I have mislead you all: SO, my plan is to a) let you know early so that you have no expectations and hopefully will not have got me anything yet and b) to propose an alternative: 

I would like to propose that instead of giving gifts we just exchange cards. 

If anyone really wants to give me something (please do not feel obligated), I would really like a donation to MERUK (it can be done via my justgiving page (see link below), it is very safe and straightforward to use). This is a potentially very exciting time in the ME-world. A strong link to a retrovirus has been found in the US and the UK charities are keen to fund studies to replicate and expand this research to find out what this could mean in terms of the development of a diagnostic test, a vaccine and even possible treatments in the (hopefully not too distant) future. It would give me enormous hope to feel part of making that happen and would make me just as happy as getting an actual present, if not more so. More info for those who want it is in the links below.

 If you have a favourite charity, please let me know and I will happily make a donation instead of the present I would have bought for you. If you do not make any alternative suggestion then after Christmas I will make a donation to the ME charity using what I would have spent, so if you have another preference, don’t be shy!

 I hope this is ok with everyone, thanks for your understanding,

Ashy xx

 

My Justgiving page for ME Research UK is: http://www.justgiving.com/jfqashy/ To donate you just sign up for a justgiving account if you don’t have one already, then click to donate. It is easy and you can really boost your donation if you are a UK taxpayer by choosing gift aid. 

The Whittemore Peterson Institute in Nevada that made the HMRV discovery: http://www.wpinstitute.org/  (there are links to articles in the media about the discovery and also some good FAQs about ME in general and also about the retrovirus HMRV and what it could mean. 

ME Research UK: www.meresearch.org.uk (And their reaction to HMRV from their homepage: http://www.meresearch.org.uk/information/publications/xmrvfind.html)

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!

Great Weekend!

what is this? a positive post on my “illness” blog? wonders will never cease! brace yourselves – no moaning will follow!

On Wednesday i received a wheelchair from a hire company. I was expecting a visitor for a couple of nights so got it in time for that (but she has postponed her visit for another time), although i am keeping it for two weeks in total as my Mum is also visiting this Thursday for the weekend, so we can hopefully get out of the house a bit. I am working on a list of possible excursions so we can pick one when the time comes, according to wellness and weather.

On Friday my partner took me on a “walk” in the wheelchair, with the dog around some streets by our house for a test run. I held the dog lead and she pushed me. It worked pretty well, and the wheelchair is light and easy to manoeuvre (It is called Breezy Moonlight, in case you are interested, and is very comfortable). The only problem was that if i had to pull on the dog lead, it did affect the direction of the chair, but this was ok except when she was barking and pulling madly at another dog! I saw streets i have never been down before and we were out half an hour or so and the sun was even almost out… I was not feeling great however, particularly earlier in the day so was amazed…

…by what i managed on Saturday! I booked a shopmobility scooter for midday and got a taxi there, with my partner. I did not think i would be feeling well enough to stay out long but was just desperate for some fun!We went around two or three shops, and i bought some knickers (i have been desperately needing some new knickers for ages but have not been able to get to a shop for months, and although my partner can get some for me, i really wanted to chose my own! So i was very happy with that) and then we went to Fat Face, which i love, and i got some dark grey cords and a stripey zip-up jumper with a hood, and got a free t-shirt After all that excitement we had lunch at my favourite place in town, i had a plate of anti-pasti (sundried toms, mozzerella, beans, little mushrooms, grilled courgette and aubergine etc etc) and then a cup of thick hot chocolate that you have to eat with a spoon! Yum. By this time it was 3pm. I was starting to fade but me partner just had a couple of things to get so i decided to stay with her and go home together. We eventually returned the scooter at 4pm and got a taxi home.

I was on such a high that although i lay down a while i did not go to bed properly when i got home, and had a strange high in the evening where i was warbling on about rubbish and singing and was concerned that i may be annoying ( i was assured not, but i am still not sure!). I was so nice to feel so happy and to have been able to do so much after what seems like weeks and weeks of feeling bad almost continuously.

I slept well last night, and went back to bed late morning for my customary extra hour’s nap, but have not yet felt the “pay back”. In fact today has been good as well! I have been out for an hour in the wheelchair in the woods near my house (which i have not been able to set foot in for literally years) and we covered a lot of ground – it has hardly changed since i was last there though, which surprised me. It was nice to smell the woods, which had a hint of autumn about them and toadstools popping up all over.

Then i came back and made two little crumbles! I really miss cooking and feel a real sense of achievement. They also taste great! one is plum, and the other is apple and damson. They were actually very quick and low effort to make. (I don’t have to do my own washing up, so lucky!) I have a little headache brewing despite a quick afternoon nap but am fairly unscathed and just so pleased to have been so active and been out and about so much. My good energy has timed well with the the weather too as it has been dry and even a bit sunny.

So happy days! Just going to rest up as much as possible over the next three days until my Mum visits, and hopefully i can carry on this good trend…