music to my ears

well, you will be pleased to hear that Mum and I managed to break our spell of disastrous trips into London on our visit to the Royal Albert last Wednesday night. In fact I have decided we are complete professionals at this now, provided its not rush hour, my ticket is safely stowed away in my purse and we leave in PLENTY of time.
Wednesdays performance didn't start until 7.30pm, so we caught the 2.24pm train into Finsbury park and then the tube to south Kensington. I know it seems like we were crazy early but I have learnt that slow and steady wins the race!
We strolled into the Victoria and Albert museum about 3pm which was perfect as most people had started to leave so I wasn't cracking peoples ankles with my cane, however I unfortunately discovered a major disadvantage to museums that I hadn't noticed before and I thank heavens it wasn't busy and that Mum was fully alert as I walked straight into the first glass cabinet. you know the sort I mean? Museums tend to dot them about with artefacts in them, they are usually in the middle of a room or along the walk-way, to me it just looked like the objects were in with whatever happened to be on the display behind the glass cabinets. Thinking about it I truly don't know how the alarm wasn't set off on the first one I hit. You know that scene in the newest Charlie and the Chocolate Factory where Willy-Wonka walks straight into his glass elevator after having his shoes shined by Charlie? That was me, and it hurt! By the time I had walked into the third glass cabinet Mum had had enough and suggested that we left the V&A quite quickly and went to look for somewhere to have food. There used to be a little Italian café just down the street from the V&A serving really lovely food and cake so off we went in search of it only to find that it had been replaced with a Lebanese café, we played it safe and had pasta, which was good but the cake was even better, there was just about every flavour cake you could imagine and I kinda figured that all that bumping into glass must have worked off some calories so I ordered this massive slice of black forest gateau and Mum had a Lebanese cheese cake  which had a strange texture but tasted amazing.

By the time we had finished eating it was getting on for 5.15pm so we walked slowly back to the tube station and followed the signs to the Royal Albert, see, none of this getting lost this time or following stupid sat navs. The signs took us right to the front door of the RAH, and as usual I was struck by the awesomeness of this grand old building, it always makes me feel like I need to get a deck chair and sit outside and just look at the building for a while, and then take my chair inside and do the same. As we were early, we breezed through bag check and managed to get a table in the café without any problems, and there we sat with a glass of wine each, watching the steady flow of people coming into the building.

At 6.45 the door to our box was opened and we were shown to our seats. We got comfy and watched people taking their seats down below and marvelled over how clever we were to get to the hall with only a few near hits and misses with some glass cabinets and me falling down a kerb through miss-use of my cane (like I was pretending to look cool as I crossed the road in front of a line of traffic that consisted mostly of shinny BMW 4x4's and a couple of mercs, and fell straight off the kerb) and the biggest miracle of all was that my train ticket was still in my possession!!
As the musicians of the Royal Philharmonic Orchestra started to take their seats and tune up their instruments we were warned that there was strictly no photography, which didn't seem to make a jot of difference as people had their phones out and were snapping away. 
I have never seen or head a Orchestra live before and so this experience was all new to me, and I wasn't at all prepared for what I heard. Having poor sight usually means that other senses are 
enhanced and when the conductor started the overture the noise meeting my ears was extraordinary. I kept turning to Mum and asking her if she could hear what I was hearing, and for a moment it was a little emotional! When you listen to a song on the radio or through your device, you listen to the words and maybe sing along to the tune, but rarely do we think about what goes into making the 'tune' and every single instrument that is used to make a song, some of the instruments played in the orchestra really stood out for me, the percussionists were fundamental, every time a cymbal was tapped or a chime struck the noise exploded in my ears and I had to stop myself swinging round and asking if the people around me could hear it. When the vocalists came on and sang some favourites from the 'Best of Broadway' their voices were secondary to the beautiful sounds created by the musicians, even now as I am sitting here glancing at my programme and the titles of some of the songs played, I can still hear the orchestra in my memory but I cant remember what the voices of the vocalists sounded like, except may be Matt Henry who really does have one of the most glorious voices I have ever heard. 
At the end of the night the orchestra and the vocalists performed a medley of ABBA songs which ended the night beautifully, the whole hall was singing along, I am once again grateful to the RNIB for the opportunity of experiencing something so spectacular. 
The homeward journey was cold and we missed our connecting train but it didn't matter because as I crawled into bed at 12.30am I had a very big contented smile on my face and a eagerness to write my review of the Royal Philharmonic Orchestra at the Royal Albert Hall. x

Conclusions

I have concluded this week that sometimes consultants and/or doctors expect you to read between their lines, understand all their medical jargon and to 100% understand what they have told you as you leave their consulting room, they also expect you to remember all the medical jargon which you don't really understand from the minute you lift your backside off of the seat all the way home into your living room. Sometimes you take another pair of ears with you in the hope that the adult attached to the ears might understand the jargon better than you, and if not, well, your in trouble really.
Today I am actually fed up with this not being able to see feck all crap, and the reason is, yesterday I received a letter from Moorfields concluding the findings of my appointment last Thursday. 
If I quickly remind you that last September the hospital said they had found a hole in the Macular of my left eye and it was at full thickness. I spent the next three months in tatters and a blubbering mess at the thought of a very dark and fuzzy future. Then I was told on my next visit in November that, HEYYYY Nope, that was a mis-diagnosis and its just a massive floater which we can remove but it would be a really big risk, off you pop for another three months sitting at home doing feck all and wait to see if the floater moves on its own.
Don't get me wrong, without these guys and their teams, firstly I wouldn't have had so much fun, but secondly and more importantly they were there when I needed them most, they knew what needed to be done and they got on with it, I have trust and respect for them beyond words, BUT they their ability to translate what they are saying from their educated mouths to my uneducated ears is shocking. I came away understanding four words...no hole...big floater. I was happy. And when the letter came from the hospital giving their findings, I never even glanced at it and just filed it away with all the other Moorfields related bits of paper. 
But yesterday a week after my third appointment in less than six months, the letter plops on my door mat. 
But yesterday, was a sad day for our family and because we had all cried a lot, I had removed my contact lenses and was looking for a distraction. With my glasses on I can read better if I hold the paper close to my face, much better than I can with my contact lenses in, in truth I think its fair to say I cant read or retain any information with my contacts in.
So there I sit on the sofa, Ralph curled up one side of me knowing something is dreadfully wrong, a confused number two daughter sitting the other side of me with a million questions and expecting honest answers so when they both dosed off the Moorfields letter seemed a happy relief from the age old question...'what happens after someone dies Mum?'
Sitting there with the paper pressed to my nose I start reading, name, address, hospital number......bla bla bla, Diagnosis: High Myopia...yep I know that. Bilateral posterior vitreous detachment with Weiss rings...What the actual F**k, so I turn to good old Google, and from what I can make out after reading through loads of stuff, its to do with the jelly in the eye detaching and guess what, its has left something called a lamellar hole, which is certainly no-where near the scale of a Macular hole, but nether the less at no point was a hole, lamellar or not mentioned to me at the appointment, (or so I thought) there is also something called macular shisis...don't ask me, I have no bloody clue.The next thing on the list is..Myopic foveo-schisis-stable....which is the 'floater' and yes it certainly is stable, unlike my temper at the moment.
Then on the back of the letter there is a sentence dis charging me until any changes occur. It then lists the changes and categorises them into 'Emergency, go straight to Moorfields A&E' OR gradual deterioration, get referred back to the clinic. Charming!
I recon I must have read the letter over and over again at least ten times before I leapt up sending daughter, dog, box of tissues and a whole mountain of soggy tissues into the air as I charged off to locate the previous letters from the hospital only to find the Lamellar hole was indeed mentioned in the letter from November and I was whole heartily dismayed to realise the only part of the conversation I remember from the appointment in November are those bloody four words...no hole...big floater. Plonking myself back down on the sofa and thinking back hard to that appointment I slowly remembered some words about jelly in the eye and some other words that I don't understand. I really wish they would explain all these things a bit better, I feel so scared that there are words in that letter that I don't understand, I don't know what will happen next. I can see that a consultant is dealing with your condition not you, so they don't need to worry that you are terrified because as far as they are concerned they have discovered the diagnosis and make plans for treatment. The moment they close your file they are not concerned with how you will be getting home, or how you will manage at work or how you cope with the diagnosis they have given you, because, and quite rightly so, they have done their job. 
So I have concluded that there needs to be someone in the middle, someone you can speak to and say, errrr could you just explain that to me in a language that I understand and where can I find more information about the condition, as we all know Google isn't right all of the time. So although today has been another emotional day I have realised that the misunderstanding is my fault, I was so relieved to not have a macular hole that I didn't listen, but to back myself up it is so hard to concentrate once my eyes have been dilated because my ears just go off and do their own thing, listening to the light clicking, someone cleaning, a conversation down the corridor, my ears are tuned into anything other than what I am supposed to be listening too, in steps the pair of ears that are attached to an adult and supposed to listen on my behalf but those ears are too busy hoping that I am ok and not listening to the consultant either....I think I need to change the spare pair of ears I take with me in future!!
Tonight I am calmer and I have an appointment with my Optician on Monday morning and hopefully she will be able to help me understand it a bit more.
Next week I hope to have news about returning to work, I really would like to carry on for a few more years if I can, I miss the children and the people I work with. I miss that chatter, the banter and the feeling of belonging to a important group of people. I miss being me!
On a much brighter note...Guess who is off on another adventure to the Royal Albert Hall next Wednesday evening?? If Mum and I manage to get there and back without loosing my ticket or getting hopelessly lost I will 'eat my hat'
Have a good weekend everyone x

Recon Ralph fancies a bit of baking!

Snow

What was supposed to be a busy week last week got less busy with the arrival of the white stuff. Monday I met my new Doctor, and I am glad to say she is lovely and is one of those people who listens carefully to what you are saying giving you her full attention and then explodes into a torrent of solutions, within 10 minutes I felt like I was on the road to getting a few nagging problems sorted and had been promised the upmost support with getting back to work and moving on from this awful limbo I seem to be stuck in. 
After seeing the Doctor I made my way into Hitchin to meet my friend for a swim. While I stood in the carpark waiting for her, my feet were freezing cold despite three pairs of socks, the biting cold wind was whipping around my neck making my back feel cold and achy, every-one who walked past was hunched against the weather, and then there's me, standing there with my swimming bag, shivering. As the minutes ticked past I went into a bit of a daze thinking about the quickest way of getting from the pool side to the changing rooms without turning blue, and then there is the whole drying my hair business, if I don't dry it I will definitely be suffering from hypothermia before I get home, and if I dry it at the pool I run the risk of my classic Italian genes turning my hair from a tame straightened style to a mass of frizz and wild curls.
As my friend turned into the carpark I had already decided we were fecking mad, and as she got out of her car, we stood looking at each other saying nothing for a few seconds, I just knew she had been thinking the same, so we chucked our swimming gear in the back of the car and went for coffee and cake.
The weather got colder and colder Tuesday and Wednesday, and the sky was trying desperately to drop snow on us.
Wednesday night, I quite literally sat on the edge of my bed praying that the snow wouldn't stop me from going to Moorfields on Thursday morning, I don't go for the religious stuff, but I did thank god when I woke up that Moorfields was open as usual and, even more astoundingly, the trains were running. Not only were they running, they were on time!!
It felt really strange that London had more snow than we did.
I am very proud to tell you that I DID NOT at any point miss-lay my train ticket, mind you, this is largely because my partner took them from me and kept them in his wallet until we needed them, the man just doesn't trust me!!
The hospital was almost empty, with people choosing to stay home in the warm. Nurse Tina was on duty and as I haven't seen her for years I was hoping she would be doing my checks, but another nurse called me in saying, she would be my nurse for today, as frankly, she was bored to death as all her patients had cancelled so she thought she would step in and help Tina, she carried on telling me how she would attend her appointment even if she had broken her leg, and then proceeded to balance her leg on the chair and slap her thigh. I couldn't get a word in edgeways as she chatted along, laughing to herself. This nurse, dare I say it, was even better than Tina. When she gave me a sight test, she was astounded that my sight was so cranky and went into a high pitched rant about people getting on with their lives no matter what god dished out to them. All the while she was chattering, she would bark in a few orders...Look up, Look down...Right, now take out your contact lenses.... I got on with removing them while listening and making noises of agreement, the right one came out without a problem, the left one just wouldn't come out. With the nurse standing at my elbow, I felt a little pressured and tried harder to remove it, then 'ping' out it came, bounced off my hand and disappeared. I said 'shit' and the nurse said 'holy mother of god, how the hell are we going to find that little bugger' She immediately springs into action and starts, totally inoffensively, 'patting' me down and muttering under her breath that we were never going to find the little bugger. As she lifted my arm to start patting me more, I felt a tiny bit of wet on my arm under my jumper sleeve, so I shouted 'WAIT' its up my arm...sure enough, there was the little bugger, clinging onto the hairs on my arms. Well, anyone would have thought that my nurse had won the lottery, she jumped back, slapped her hands to her chest and began doing this over exaggerated breathing thing which was hilarious. After I had safely deposited the little bugger into my little pot, she gave me a hug and said she hadn't been that afraid for years....how on earth would I manage without my contact lenses..ahhhh yess a question I ask myself nearly every day.
The next moment I was off for some scans and then sat waiting to see Dr Andrews, the lack of patients meant I didn't wait long and when the Dr saw me he came over for a chat then disappeared up the corridor, I saw a different consultant that I haven't seen before, but was working with Dr Andrews, he carefully went through my scans and agreed that the floater hadn't moved, we confirmed that the shape of the floater that he could see on my scan was the same as I see when I look. He also agreed that not having the operation to remove the floater was indeed the correct decision, and after a final check of my scan and shinning some bright lights into my eyes he declared me 'stable', well the eyes are anyway. 
So, I am happy to say I was discharged on the condition that I attend A&E immediately if anything changes and they of course will see me.
The reverse journey home was a little less smooth as our Peterborough train was delayed by 20 mins, which in the end was only 10, but with a platform change from 7 to 5 sending a flow of freezing cold people running down the platform to the stairs. me included as I tried to, quite literally, blindly keep up with the flow, my partner, linked arms with me and ordered me to slow down just as my foot completely missed the first step and very nearly send us both flying down two sets of steps, so I slowed down. The rest of Thursday was spent asleep and Friday morning I woke up to a sky heavy with snow and my meeting at school cancelled. My contact at RNIB was attending the meeting with me, but he has to come from Norfolk and was already snowed in, the first few flurries started here just after lunch and by 4pm we were also covered in a blanket of white. The thing with all this was, daughter number one was driving in the snow storm and was frightened, so I chatted to her (hands free of course) back into our village, then I wrapped up warm, grabbed Ralph and his lead and stomped down to meet her at her last dog walk of the day. I was concentrating on where I was going I didn't really notice how fast and thick the snow was falling until we were in the field and although I know its something I shouldn't do, I am so glad I did, it was beautiful and I didn't care if it hurt my eyes or gave me head ache, balls to snow blindness, this was well worth it. Ralph absolutely loved it, and spent a lot of time running out of my sight, which probably wasn't actually very far, and then running back and launching himself at me. After half an hour, my Daughters dog walk had finished and much to Ralphs disgust we left to walk back to drop the dog off and get her car. My village only has one road through it, and this was jammed with cars going no-where, so we abandoned the car and walked home. By the time we got home Ralph had ice stuck to his chin and the hair over his eyes, but was also sporting this stupid grin, which said, THANKS MUM THAT WAS BRILL. X

Missing my toes!

I remember a time when this was so easy, you know, your partner moans at you because your toe nails have scratched them during the night while you  slept, so you rummage around in the bedside draw for the nail clippers, 20 seconds later, problem solved. These days I find myself dreading the job of cutting toe nails. I tend to leave them until they rub on the inside of my shoes through my socks, and by the end of the day the tops of my toes feel like they are bruised, I cant walk properly and there are holes appearing on the seam of my socks. I know I could get help, you know, ask someone to cut them for me, but I have a lot of hate when it comes to feet! Hate people touching my feet, hate the feel of toe nails ,before and after they have been cut and HATE HATE HATE the fact that I cant see my toes and cut my nails by feel and dam good luck. You hear of these couple who suck each others toes, what the hell is wrong with people!! That only sounds like some sort of torture to me.
I only once sliced the top of my big toe and that was when I was using some special toe nail clippers provided by the RNIB, they were a chunky apparatus with a light on the end, and they were 'safe' to use, but you know me, useless as usual, and managed to prove safety wrong and spent well over a week catching my sock on the sliced big toe and making it bleed. Toe nail clippers got thrown in the bin and I fished out a pair of old baby scissors that I used to use for cutting the toe nails of my girls when they were babies. They don't make a sharp cut but I don't care, there is no bloody way I am slicing any more off of my toes. I do find it easier to find the toes on the ends of my feet when the nails are painted, but I cant paint them and I think the girls get fed up with my squeals of displeasure when anyone goes near my feet, so they don't offer to paint them for me very often. I sometimes wonder how I would know if there was something nasty going on all the way down there at the end of my legs. I remember Gran saying to me many years ago....'Always look after your eyes and your feet, in your case Lyn, just look after your feet'..her words are always in the back of my mind, not because she thought my sight was crap but because I think I should probably try to be a bit braver and 'look after my feet' actually, now I think about it, its probably her fault I hate feet so much, she had the most awful feet I have ever seen, and as she is no longer here to defend herself, she gets the blame...sorry Gran.
Anyway, toe nails have been hacked down for a few weeks, this is in anticipation of a busy week ahead, and a lot of walking. Doctors tomorrow morning, to talk about going back to work and hopefully signing a slip of paper to say she is happy for me to go back. Swimming in the afternoon, did I tell you, we did 14 lengths last week?! Moorfields Thursday morning to check the floater (which is still there), check all is stable and to talk about operating on the floater and Friday to meet with my boss and talk about getting my backside back to some kind of normality. 
If I am honest with myself, I know there has been some deterioration in my 'good' eye. Mum and I took some of her grandchildren out to tea on Saturday night at out local Indian restaurant. I used to be able to make out some of the writing on the menu, but I couldn't read a single word this time, and sort of did the 'act' thing and causally got the kids to recommend a nice dish. When the food came, I argued with Mum about what sat in my bowl on the hot plate in front of me,  I said it was chicken in a sauce and she was saying....Noooo Lyn, its veg and potato. She was right and my chicken came in a different dish with my rice, I had no idea!! But it all tasted lovely so it wasn't a problem really. All was going swimmingly, until the end when I stood up to leave with everyone else and realised I had somehow (and I really don't know how) managed to get the arm of my coat zipped into my hand bag. The zip wouldn't budge and I had to wriggle into my coat while the handbag hung off my arm like some sort of handbag growth, get Mum to do my coat up for me, all the while the kids are pissing themselves laughing at me and the restaurant staff are just standing there with their mouths open wondering what the hell the fuss was all about. We walked all the way back  to Mums house with me clutching the dam bag in an abnormal position and looking like a right prat. However, by the time I had wriggled out of the coat and handbag, left it on Mums kitchen floor, raced up stairs to the loo for a wee and readjusted myself, Mum had yanked the coat and handbag apart, order once again restored!
Today I pushed myself around a busy Asda, and I am definitely stronger willed than I was, the confidence that I lost in September is returning, I seem to be able to maintain composure and concentrate on looking for the things I need, although I wasn't on my own, I still felt very level headed. So, fingers crossed for a good day at the hospital on Thursdays, I am nearly 100% sure they will say that my eyes have stabilised and I should be good to get back to it again, well, obviously I will be taking it easier and being more respectful of what I have. What's that saying....'once bitten, twice shy'...or in my case, 'tenth time bitten, learnt my bloody lesson at last'.
Will let you know how it all goes, Speak soon x

Acting

Well, no sooner had I mentioned 'the Act' in the previous blog and, blow me, I receive the latest bulletin of RNIB connect and there is a article in there from a blind gentleman, entitled...I feel like I should act more blind than I am....He talks about how people are stereotypical, especially when he is using his white cane. He feels that many people expect a blind person to act a certain way and when using his cane if he doesn't use it correctly he will be judged and challenged on how blind he really is.
Of course, my first reaction to this is...people should mind their own bloody business, but I get it, and I am almost really pleased that this man feels this way, for it means that I am not alone.
The difference between us is that he feels he needs to act more blind, whereas I act less blind! Sounds bonkers, but my act has blossomed into something so beautiful and clever that I can fool most people, sometimes I even impress myself. 
Of course, there are occasions where it is impossible or just down right stupid not to let people around me know that I cant see! Like at the swimming pool, I always use my cane at the pool side, from the moment I step out of the changing room in my fancy, slightly too tight cozzie, my cane is in full working order, its so important to let other people know, it lets other swimmers know that I am a hazard, the life guards see me and acknowledge me and the flooring at Hitchin pool is kind of like a parquet flooring sort of effect, and it makes me dizzy, the acoustics in there are also really disorientating, so I am fully aware that this is not a safe place to be acting like I don't have a problem. 
Because everything I do is planned, its very easy to act, acting in a very strange way, makes me feel like I am in control, however I do always feel like I am walking a very fine line between success and disaster.  Lets take yesterday for example, So I needed a new light fitting for the hall and living room, my friend messaged me on Friday afternoon to say he would pop round Saturday morning to do the job. No problem, except I had picked up the living room light fittings in the week, but the hall one I couldn't decide what I wanted to put up there. When his message came through I was out walking dogs with my eldest daughter. This put my brain in a complete tizzy, but I worked out a plan that would mean rushing home, changing into clothes that weren't covered in mud and dog hair, jumping on the next bus and running to Argos before it shut to pick up the light fitting, and getting the next bus home. My heart was thumping in my chest as I changed clothes, grabbed my handbag and bus pass and was just about to go charging out of the door to run to the bus stop......Maybe I should check the item is in stock...so back in I go and check. Dam thing was out of stock. So I order it in for the next morning, take off my coat and shoes and relax. The following morning, I get up early with a fresh plan in my head, this was instantly scrapped as my daughter said she would drive me to get the fitting. We arrive at Argos and I have my reservation number ready for the young lady on the till, so I sent the daughter off to the bank to get cash to pay my friend for fitting the lights. Everything was going swimmingly, until the young lady informed me that my light fitting was on clearance because they no longer stock the bulbs for it. I felt so sorry for the young girl, my face must have looked like I had just witnessed a murder, and in that split second, my act was trashed. I couldn't go look through the magazine to order a different one, and asking for help from a teenager seemed too humiliating so my instinct was to run away. A few seconds later, the daughter was back and I was walking out of the shop after thanking the young girl for her help but cancelling the order as I didn't really see the point in buying a light fitting that you couldn't get bulbs for. So we went to another shop, and the daughter helped me choose a less lovely light fitting and light bulbs. As my daughter was with me, everything was fine and my act was restored, but if I had been on my own there would have been no way I could have purchased the fitting and the correct light bulbs. 
I have come to realise that there is much more to this acting thing than even I give credit too, and I do feel that if I am seen doing something without my cane then I should be behaving a certain way. Like walking Ralph, I can walk miles over my learnt route and not see a soul, but then, I will see someone who knows me, but doesn't know enough to understand that I am walking a route that has been taught to me and I feel like I have to explain myself because I should really be sitting in a chair safely at home, never going out, never experiencing slipping arse over tit in the mud or standing calling your dog for ten minutes only to realise the little bugger has been standing beside you all the time, nor do they see that after the dog walk I am exhausted and barely have the energy to do anything else for the rest of the day. Of course, when I am with someone it takes the pressure off, I tend to let others take the lead and am happy to be guided. But, its not always practical to have someone there to do things with me, and then there is the whole matter of independence, why shouldn't I be doing things on my own? Its not that I don't need my cane, its that I have learnt to manage with out it. Mind you, maybe I do feel that it is time to start carrying it around with me, its just a shame that it doesn't fold up smaller.
Anyway, like I said, its so easy to pretend that I have seen something when someone passes me their phone and shows me a picture of their cat, its not that I don't care about their cat, it just easier to say ohhhh yes how lovely. All this makes me worry even more about going back to work, having eyes watching me, expecting me to be acting a certain way, or expecting me not to be able to do certain things. I have been in this role for fifteen years, I understand Autism like a mechanic understands a car, I don't need sight to continue working along side my colleagues, I need trust and honesty. Although I have worked in the same building for all that time, its going to take me a few weeks to get back to grips with it, I will never be able to work at my usual speed again and that is something else that might be difficult for others to understand. Again I find myself wishing I looked different, if people could see it, they might understand it better.
I am starting to depress myself now, so I will stop banging on.
Oh, I know what I meant to tell you, The RNIB contacted me again to tell me that I wrote a fab review for The Royal Albert Hall and asked if they could use it, which of course I agreed too. The more I think about it, the more I love the thought of writing reviews, a fairy tail world where I could go off visiting loads of different places with Mum and then I could report back on all our adventures....A lottery win is needed I think! That said, I have put my name down to be put in the ballot box for the next trip to the Royal Albert in a couple of weeks, I don't rate my chances this time but you never know.
I leave you with a couple of photos of my walk with Ralph today and my very first glimpse of spring. x

Questions

The arrival of my new washing machine and dishwasher has meant I have spent, at least, the last two weeks, firstly, working out how to use them and secondly, catching up with the back-log of washing. I have become obsessed with checking the weather to see if I can get washing on the line instead of hanging it all around the house in the hope that it dries quickly. I am also becoming increasingly jealous of my family living in Australia, whose washing would be dry after half an hour outside, although I suppose it would be easy to leave it too long and end up with baked clothes that are impossible to iron....anyway, enough of the domestic twaddle.
The other day someone asked me how I was and how I was getting on. This sort of questioning always throws me because I avoid being put on the spot and being the focus of conversation. Its easy to talk about it from a blog or to someone you don't know, but its hard when someone you know asks an outright question and you want to give a quick and honest answer, but things are much more complicated than a two word answer.
So, one of the questions was, How is your sight different now to back in September? and, How has the floater affected you and what you see?....see what I mean? How can you begin to reply to that when you are standing at the bus stop and you hear the bloody thing rumbling around the corner. So, instead of being honest, I say...ohhh its not too bad, I am learning to live with it. Ignoring the first question and vaguely answering the second while I avoid any eye contact and fumble around in my bag for my bus pass when I know full well its already in my coat pocket. I then make myself look even more of a prat as I leap up on to the steps of the bus and nearly knock myself out on the wing mirror, when the bus driver said, Are you ok love? I wasn't sure if I wanted to tell him to 'F**K OFF, or cry, noooo, I need a hug!!
When I got myself seated I began to think about the person and what felt like invasive questioning. I felt like I was being judged and that maybe this person didn't believe that my sight is so bad because I was catching a bus into town on my own, within five minutes I had managed to convince myself that no one believed me, and that people were mocking me because I didn't and don't 'act' blind. By 'act' I mean, I and people like me, learn very quickly how to act normally. Regular Joe with fully functioning eyes takes for granted his or her own sight, so we as folks with impaired sight find it easier to fit in with regular Joe than force our worlds on others. I argue with myself everyday about using my cane, if I use it I stand out, If I don't, no-one knows, people don't jump out of my way like I had burnt them, people don't stand and stare but there is also massive down side, like when you cant see the price of something, or read a label, if I had my cane and asked someone what was written on a label they would know instantly why I cant read it. So, the 'act' comes into play..you stand there with your bottle of shampoo, you have no idea what the price is or if there is a deal on, so you listen in on other peoples conversation, usually people will stand there saying...ohhh that's a good deal, buy one get one half price, so instantly I know to pick up the same bottles as they did, also getting shampoo AND conditioner can be tricky as often the bottles are the same colour, so you say to the people, ohhhh YESSS that does sound like a good deal, would you mind passing me a shampoo and conditioner...BOOM!! The people don't know that you cant see, they just think you are lazy!
Another trick, especially in Superdrug, is to listen to the radio, they have their own channel and they tell you all about deals and offers.
I know I slip into the 'act' very easily, maybe too easily, I have noticed that lately, when we are out in the car, my daughter says...ohhh Mum, look at that beautiful puppy, I say OHHHHH YESSS how lovely, instead of saying, where? I don't see a bloody puppy! and what's worse is, I still don't see a puppy, she banging on about how cute the puppy is and I have no idea what puppy she is on about!!
Well, anyway, getting back to the bus ride and the questions. After beating myself up for at least five minutes I gave myself a virtual slap around the face, shut my eyes and took a few deep breaths, how do I know what the person at the bus stop was thinking? Why did I assume that the situation was negative? Maybe, just maybe they were asking questions because they were interested. So, I thought about the questions.....
How is my sight different, how does the floater effect sight and what can I see? Since September last year there have been many changes, the floater that first appeared was very black, very big and I couldn't see past it, it made life very difficult. Now, in February, a good five months down the line, I am unsure if it is the floater that has changed or me. I know it hasn't gone away or moved like the hospital hoped. I know it is as big and as black as it was, however I seem to be able to cope better. My brain seems to have adjusted to either see past it, or, which is more likely, my brain has stopped trying to see what it saw before September and has settled down to a new 'sight level'. This would explain why certain things that I could do before I now cant do. Like reading and writing. Reading is a waste of time, if its not large print I simply cant read it, even with magnifiers its hard going. Writing on the other hand has been a challenge that I am winning! At first I just couldn't write, well, what I wrote was incomprehensible, when I was at school I was proud of my neat writing, so I was gutted that I didn't seem to be able to form letters properly, let alone produce a neatly written sentence that someone could read and understand. But as I am writing my list of jobs to do everyday, I made sure I took my time and practised forming letters slowly so now although I cant read what I have written, I know its neat. I have also noticed that I get tired much quicker than I used to and doing different activities can be exhausting and will take me a couple of days to get over it! We went to Milton Keynes on Sunday to do some shopping, MK is a big shopping centre and I haven't been there for years, so after three hours walking around, I was starting to get dizzy with the constant moving and flow of people and the concentrating on keeping up with the family. I am also less patient than I was and get frustrated easily, my contact lenses make my eyes tired quicker than they used to, but if I take them out I cant see a thing with my glasses on, this makes me feel like I am trapped in a little world of my own, as once my lenses are out, any thoughts of doing anything other than sitting still with the ipad rubbing on the end of my nose are impossible. 
See, how was I supposed to explain all that in a matter of seconds, and not sound like I am moaning and feeling sorry for myself.
Guess what...the sun is shining, so I have to rush and put more washing on the line. But I leave you with a photo of Ralph, sneaky little git!! 

occupational Health

Another week has whizzed by, and there have been a few of those moments where time seems to stand still for you, but what's happening around you carries on, those moments are often the ones which firstly make you grateful for who you are but also make you remember what you are. 
Sitting in the MacMillan care unit on Monday at Lister Hospital I found myself looking around at all the people sat on the sofas and arm chairs, all sitting hand-in-hand with a loved one, some not speaking, others making empty plans for the future. I watched as one by one people were called in for either appointments with their Doctor or to receive treatment, sitting by the nurses desk I couldn't help but watch as the nurses called each patient to be weighed before their appointment, the nurses showing fond familiarity with most of the people they called and if not familiar they showed kind, gentle friendliness towards the newly terrified patients.
I heard snatched of good news and bad news as people passed where I sat, with strangers giving mumbles of sympathy or hope as these people passed by. There were people at all different stages, and although we were all sitting as part of a massive hospital, the waiting area felt like the only place left in the world, no-one minded that Chemotherapy was running an hour behind, it just meant more cups of tea and biscuits and a longer time holding the hand of that loved one. The heavy feeling I feel in my heart hasn't left me some five days later, and I keep wondering how the very sick man sitting in his wheelchair dressed only in his pj's and dressing gown is, or how his daughter is coping watching her Father become weaker, knowing that the colour his skin had turned to and the pain that rippled through his body each time he moved can only mean one thing, Or the lady and her husband, the husband looking wretched, terrified, and watching his wife's every move as if scared she might disappear while the wife was full of questions, positivity and defiance, and then there was the family, a family of three, man, woman and a tiny baby, the woman pushed the buggy with the baby and the man walked in front of them. I expected the woman to get up on the scales to be weighed as she looked so lost and scared, but no, it was the man, this perfectly healthy looking man, as they walked through the doors that connected the waiting room and the doctors consultant rooms I could hear the nurse explaining that his blood samples had come back and then she started explaining there showed a problem with the cells. Her voice drifted off as did the disappointing and devastated noises coming from the man and the woman as they were led through the doors to see the Doctor. I am still wondering about the lady who was so pleased as she had put some weight on and that she had been given happier news that day. There is nothing that can prepare you for something like this, no-one can tell you how you will feel or what will happen. This is a place that puts things into perspective, never take anything for granted, Cancer doesn't care who you are, what colour you skin is, how rich you are. Even though I have a very good friend who has been through this, I feel ashamed that it didn't feel real to me at the time, I only saw it from the outside looking in, instead of sitting on that sofa, Monday made me realise how real this is and how very different life would be now without her. 
I have spent the rest of the week feeling emotional and sensitive, I have cleaned parts of my house I didn't know you were supposed to clean, I have washed walls down, scrubbed floors and polished windows, all the while thinking of those folks I saw on Monday, and hoping that they know that people are thinking of them.
All this activity meant that Thursday came around too soon and I wasn't prepared for it, the Occupational Health appointment was upon me and it wasn't going away, so armed with the person who is very much my strongest defence, we barrelled off to the appointment not knowing what to expect. My previous experience with Occy Health was many years ago, and I saw a Doctor who wasn't very pleasant, and sent me back to work, which was fine but there was nothing really decided about what I needed only that I have a sight problem and I seem to be managing, so....carry on then dear. 
The lady we met on Thursday was not like the Doctor I met before, she explained who she was, what her qualifications were and what Occupational Health was there to do. I have always tried to look at things from the employers point of view and tried to remain as efficient and hard working as I can for fear of others  feeling that I was incapable of doing the job. But this lady made me turn the situation on its head and made me consider myself first, She made me remember that I have a condition that enables me from living my life as I would like to but there are also adjustments which can be made. She understood my need for normality but made me realise that my normal is normal, not someone else's normal! We talked for a long time about what to expect and how to prepare for returning to work. There are so many considerations and situations that I will need to be ready for. The emotional side of things, the staff I haven't seen for six months, I know some will want a hug, Others will be afraid to ask questions in case they might upset me, some staff will be new and wont know me while others wont care. Having to take a step back instead of taking the lead, learning to say out loud that there is something I cant do instead of just thinking it. Exhaustion, my brain works so hard to absorb all the information it receives, desperately tucking information away in memory for the next time I need it, the information I need for work has been asleep for months, it will take a while to get it pumping around my head again. Life doesn't stop when you finish work for the day, there are still Mum matters to get on with, meals to cook, house to clean, dog to walk, I know this process is going to take a while and it will be tiny steps as I become familiar and confident around the building again, and then building and rebuilding new and old relationships with staff and all that is before I am let back into the classroom. Above all she was very clear about the level of support they are there to provide and was keen to look into ways of helping me manage better. I am happy to come away from the meeting not feeling like a hindrance and with the knowledge I still valued as a member of staff. All that I have to come is nothing compared to what those people in that waiting room are going through and I count myself very lucky that the only thing I am loosing is sight.  Life can be cruel, don't take it for granted, do the things you want, tell the people you love that you love them and above all don't take chances with your health.
Speak Soon x