Tuesday 27 March 2018

Liability

The review I wrote for the RNIB last week has been published in their on-line news letter had I have had an email saying how good they thought it was and would I like to do an radio interview about my experiences at the Royal Albert hall to see if I can help to encourage others to register an interest in attending an event. Of course, I didn't want to sound too eager so I left it a day before relying ERRRR YESSSSS! I am waiting further instructions and a date.
Once again I have been traveling the emotional rollercoaster that seems to be my life at the moment. I am so looking forward to getting back to work and have started popping in for an hour before school starts and the children come in just to, 1; have a chat and a catch up with everyone which sounds mundane and such an easy task for regular folk, but I find it exhausting concentrating on what people are sharing with me, I just wouldn't be able to manage being social as well as concentrating on the things I need to do within the classroom. 2; get familiar with my surroundings again, I have been away from work for six months, things change. The classroom is now a completely different set up to what it was in September, and as soon as I walked into the school, new carpet smell hit me...new carpets are confusing. 3; Regular folk leap out of bed in the mornings and get their act together and charge off, It doesn't matter to them that they haven't put the bins out or walked the dog, or thought about what's for tea, or made sure every thing is tidy before they leave the house and that's because these things can be done later. I spend my life anticipating and considering how I will be feeling later. Starting back to work is going to be exhausting, so I need to ensure some of the jobs are done before I go to work in order to take the pressure off later on, there are loads of things to consider, later might be too dark to walk the dog or put the bins out, the weather might change and suddenly the sun is so bright I cant see where I am walking the dog. Or what about if I come home and I have done too much and have a 'warning' head ache and need to sleep, my girls will still need feeding. I know they can cook for themselves but there are only so many times you can eat Katsu curry and gingerbread people in one week. Forward thinking and organisation are the key. On top of very thing else its still important that I am Mum first, my girls must feel that there is time to talk to me, time to share worries and download their day, no matter what kind of day its been, and that's something which can easily get lost in the rush and bustle of home/work life and before you know it your child has had a crap day and instead of talking to you they are shooting aliens on their IPad or spouting it all over Facebook. 
All that said, I do sometimes feel like a complete failure and for the very first time the other night I felt like a liability. This came as the light bulb had gone in the porch and I cant manage without it, so, I got my stool, turned the light switch to off position, climbed upon my stool and fumbled about with the downlight bulb until I figured out that it was a screw fit, I climbed back down from my stool with lightbulb tucked safely in the pocket of my dressing gown and wondered into the kitchen to find a bulb with the same sort of fitting, the bulb I found had the same screw fitting but was a round bulb instead of a downlight sort, so up on the stool again I fiddled around again in the dark and found that the bulb screw quite nicely into the hole, down the stool again, turned on the light and hey presto, the light was working again, so I left the light on, put my stool away and carried on doing jobs. About half an hour later I opened the hall door to hang a coat up and the foulest smell of burning electricity slapped me round the face, at first I thought it was coming from outside until a helpful daughter informed me that the light bulb was going black. Out came the stool again and with a tea towel I removed the incorrect light bulb and replaced it with a different one which looked more like the one that came out originally, turned the light back on and the smell went away. I was pleased with myself for all of about 20 seconds until I realised that I couldn't even change a light bulb on my own without nearly setting fire to the house. I sat on my stool and wondered about the future, how on earth can I be trusted on my own when the girls have left home? Will I have to go into a residential home? Pure panic set in as I sat on the stool and I felt like I was just kidding myself that I can manage to do things independently. I haven't felt that sad and empty for a long time, sometimes taking each day as it comes just isn't enough, I want to know when it is the right time to say, right, I can no longer do that particular job properly or safely so I need to ask someone else to do it, or do I just keep on trying until I electrocute myself or fall off the stool?
All this has left me with a very bad feeling that I cant shake off, I feel like I am suddenly walking a very thin line and I am afraid to cross it because there is no going back.
I am sure that everything will fall into place and hopefully the future will seem clearer, but for now, to be honest I am shit scared. x

Tuesday 20 March 2018

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

Friday 9 March 2018

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!

Sunday 4 March 2018

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