This week has been such an emotional rollercoaster I seriously don't know what's been happening, one moment I think I have life covered and the next I am a complete blubbering mess, I know no two days are the same for anyone but there is a erraticness to my life at the moment and I just don't know how long it will last.
I am having trouble with the simplest of things...hanging washing on the line, who'd have thought hanging washing on the line would produce such flashes of irritation, I have a rotary washing line, but there is a patch of vision that I cant see through right in the middle, so I reach out to peg the washing on the line and I miss the line, then I find myself mumbling all sorts of swear words at the washing line, then I have two options (actually I have three) one...beat the crap out of the washing line, throw all the clothes on the floor and stamp on them then cry....two...take a deep breath and persevere by going a little slower and try to remember its only washing....three...get someone else to do it....BUT there lies my biggest problem, why would I ask someone to do a job for me when if I tried a little harder I could do it myself?
Monday and Tuesday this week were horrific, all I did was cry and not want to leave the house, this lead to several bollockings from my Mum, partner and friends who all reminded me that whatever happens, nothing will change, of course that is a crazy thing to say, but I think. Mum especially, means that it wont change me, or the way people love and think about me, and that any changes made will be done together, I am not on my own and I should take advantages of the support people offer, at least that's what I think she was meaning when she was yelling down the phone......DONT BLOODY WELL SIT THERE WAITING FOR THIS TO GET YOU DOWN, DONT SHUT YOURSELF IN THE HOUSE, BLOODY WELL GO OUT AND ENJOY YOURSELF...another friend said something to me that has been floating around in my head for the last couple of days, she said, I wish you could see yourself as we see you...I have never stopped to wonder how other people see me, in fact it has never occurred to me that people see me as anything at all, but then I got to thinking how I see other people, and suddenly a small sentence delivered by one of the most fantastic mothers I have ever met as made me more conscious of the way I am around others and dare I say it, but I feel more tolerant. So, with this new found wisdom and the telling off from Mum, I woke up Wednesday morning and bounced out of bed, the cant do's changed into can do's if I do it a little slower, I managed to walk Ralph on my own, I walked much slower and I think Ralph was a little confused by this, but it meant I could walk further and my head wasn't spinning.
When I got home I was very tempted to crawl back into bed and hide under the duvet, but I went into the garden, my pots needed attention and my bush needed a trim!
I slowly emptied all the pots into a garden waste bag, biting my lip every time I missed the bag, I even swept up, kind of. Then I got out the shears and started to hack back the bush, it had finished flowering so I gave it a good trim, when I stood back to admire my handy work I couldn't see it properly, so I shrugged my shoulders and for the effect of the nosey next door neighbour I stood with my hands on my hips making approving noises in the back of my throat, while I was standing there thinking I was fab, it dawned on me that in the summer I had put fairy lights in the bush, the thought made me jump like I had been given a electric shock, I stuck my face in the bush, nope no lights....I got down on my hands and knees and started moving the chopped foliage, and there in little tiny chopped up pieces were my fairy lights, I am not ashamed to say that the words...Fuck it just slipped out of my mouth, I got up went inside, made myself a cup of tea and took it back out into the garden, I stood there looking at the mess, at that point things could have gone anyway, but the phone rang, it was Mum, I told her about my fairy light massacre, and her reply was, well, we better go buy some new ones then.
From then on I seem to be more in control, I even took the bus into Hitchin on my own, only the bus ride mind you as I was met by the caring man in my life when I got there, but going slower is definitely the key.
Next week I am off for a few days at my friends house, hopefully she will help to sort my muddled emotions out!
Have you ever woken up in the morning and just laid there with your eyes closed wishing the thing you dread the most would be gone when you open your eyes? For some people that might be the person they are laying next to, an illness they have or simply the nasty brown stain on the ceiling, but for lots of people its grief, grieving doesn't always mean that someone has passed away because we grieve for many situations, often not even realising that we are going through a process of loss. Some of even grieve for other peoples grief, I suppose that sort of comes under empathy but either way grief is what I feel right now.
Today I went to visit work, I spent an hour in school and then a certain lovely couple picked me up took me to lunch and then for a drive. I had a really nice day, but when I got home I was exhausted, so I curled upon the beanbag in my living room with the sun pouring in through the conservatory window and fell asleep.
When I woke up I laid quietly with my eyes closed listening to the birds outside, a train rumbling past in the distance and Ralph pushing his food bowl around the kitchen (I wouldn't mind but it had food in it!)
For a few moments I had forgotten, forgotten my sadness and forgotten what would be there when I opened my eyes. I pleaded with a god I don't understand or believe in for it not to be there when I opened my eyes, but as soon as the prayer entered my head the tears began to sting in my eyes because reality is a bitch. I opened my eyes but the blurry smudge was still there, just so I could stop the tears from flowing like a waterfall (and cos I didn't want the girls to see) I leapt up and rushed out to the garden to get the washing in.
I am really struggling with this not being able to see properly thing. One moment I don't want to talk about it the next I crave someone to listen just so I can make it straight in my head. I always wanted sight loss to be secondary in my life, even though obviously its not, but I want to be ME before I am that blind lady.
I am already sick of the niggling head ache I have all the time as my brain is screaming to regain 'normality'.
Yesterday I went into town with Mum and the eldest daughter, before I put my contact lenses in first thing in the morning I had written a shopping list, but like a complete twat I had forgotten that I wouldn't be able to read it as the smudge is much more pronounced with my contact lenses in. There I stood in the middle of Wilkinson carpark looking at a list that I had no idea what was written on it, I gave it to Mum and asked her what was on it, I recon I must have asked her about 30 times what was on the list, she would tell me and two seconds later i had forgotten and was asking her again, she didn't get irritated she just told me one thing at a time and helped me.
I hated every minute of being in town, my head was spinning, I felt sick, it was all massively overwhelming. I couldn't cope with all the movement and all the hundreds of different noises my ears were picking up. I couldn't see the prices on anything, looking for birthday cards was painstaking, and I spent ages trying to work out if the bottle I had picked up was bubble bath or shower gel. There is a big patch missing in the middle of my vision and it is making me feel like shit frankly.
The minute I was back home I felt safe again, how easy it would be just to stay home and never go out again, and to be honest I was considering just that....stay home where it is safe, get my shopping delivered, why would I need to go out?......I need to go out to prove the assumptions wrong!
Today at lunch my friend said she was astonished by the amount of people that watched me, all this does is fuel my fire and make me more determined not to adhere to the stigmatised image of what a blind person might look or act like. The grief is still very much there tonight, and I will work through all the emotions that come with that, but I am as sure as hell not going down without a fight. I know at least one of two very important people are reading this and I am so grateful to you because you are about to become my rocks. I am ready to deal with which ever way this turns because at the end of the day the grief I feel now will heal, unlike the kind of grief experienced by so many other people everyday.
So now I need a challenge, and a very good friend has brought a 'Moonlight walk up and down Snowdon' to my attention, this is it, the challenge I need, I know I have climbed Snowdon before, but not at night, not with the level of sight I now have and not with the crowd I am going to be doing it with....so get practising for we climb Snowdon next year in the dark!!
Well, it seems there really IS someone out there shoving pins in a replica doll of me.
On Monday morning I wake up to find fireworks in my left eye, as you know my right eye is useless and I rely on the sight I have in my left.
This annoyed me as I knew I should get myself to Moorfields, and there was so many things I needed to do, like walk Ralph, put the washing on the line, get something out for tea, and top of the list, go to work.
Reluctantly I phoned in sick explaining that I had to get my eye checked out, then my youngest Daughter and I embarked on a mini adventure in to London to the hospital. I took the letter from Specsavers with me as 1, it explained what had happened on Saturday and 2, it might get me seen a bit quicker....It didn't! 6 hours of being poked and pushed from waiting area to waiting area was exhausting.
My Daughter is no where near as much fun as my Mum and she sat watching Korean dramas on her phone! Even when I pinched her she wouldn't comply. There was the usual medley of people and for a while I sat fascinated by the people around me, I don't like people much, but I do like to watch them. Some folks are proper strange!
Anyway, the floater that was irritating me in my good eye had now grown from something that resembled a stick insect into what looked like someone had written OK across my eye in a thick black marker pen. More worryingly was a patch of grey mist in the middle of the OK.
I must have taken my contact lenses out 50 times to clean what I though was a smudge off my lenses.
But then the nurse took me for a eye test, all complete with the usual sympathetic tuts and sighs and the 'how DO you manage' me replying with the usual dryness, after the nurse had dilated my eyes I had to use my cane to navigate myself back across a jam packed waiting room, I swear just because you cant see people assume you are deaf as well, as I could hear old ladies tutting and saying..'poor girl'. How dare you assume I am a 'poor girl' I am actually a very tough chicken!!
It took me a few moments after I had sat down to realise that the smudge was still there, then it took me a few more moments to realise that the my contact lenses weren't in my eyes, then deep down I knew I was in trouble.
I tried to stay calm when I went off for a scan and then the wait for the Doctor to call me back in was painstakingly endless. Some guy sitting beside me was trying to make small talk with me but all I wanted was the Doctor to call my name.
I already knew that the floater wasn't being picked up on the regular machine so when I was called in the first time the Doctor talked about the risk of finding more fluid as they had in my right eye so I should be prepared to have more Avastin injections if that what the deep scan showed.
When I was eventually called in the Doctor already had both my new scan and the one I had last year on his computer screen. I knew, I just knew from the way he didn't take his face away from the screen as I was helped into the chair and the silence as he clicked the mouse around the computer screen it was bad.
I pushed my hands in between the seat and my legs and pushed down hard until it felt like my fingers were going to burst, the voice inside my head was screaming...PLEASE NO MORE INJECTIONS, over and over again, then he sighed, and his chair creaked as he moved towards me.
'I'm so sorry there is a hole in the Macular'
Silence, he let it sink in for a few seconds, and then said, 'usually we would close the hole with a operation, but in your case the risks are too high, we can and will offer you the choice but we would strongly advise against it. However I will be meeting with Dr Andrews tomorrow morning and we will decided what to do next'.
More silence, all I could think to ask was 'will it close on its own?'
No, its already at grade 3....that meant absolutely nothing to me but I began to cry.
Try not to worry (Fucking idiot, I am a woman, that's what we do), go home, take it easy and wait for us to call you.
By the time I got back to the waiting room I was crying so hard I couldn't speak, but the Daughter was there, hooked arms with me and marched me out of the hospital straight in to the safety of the London under ground at peak time. The bright yellow dilation dye was running down my face with my tears and was soaking into my top, I couldn't move my cane for people leaping over me to get to their train.
And my whole, I CAN DO EVEYTHING ON MY OWN attitude dissolved, I asked the Daughter to point us in the direction of a railway employee with a fluorescent jacket on and we will ask for help. They were fantastic, they guy we spoke too was straight on it, I held out my off peak ticket and told him I needed to up grade it to peak time, He took it from me, looked at it then at me, then put it back in my hand and said..'Your joking love, don't worry about it'
Then my Daughter and I were escorted away form the crowds and onto the correct platform where we were put on the train and told there would be someone waiting to help us off at Finsbury Park and help us onto our connecting train. AND there was someone, it was fantastic and I am so grateful to them, I was so upset and they were just so kind.
Now its Thursday and I havent heard from the hospital so I assume operating isn't a option, so I will wait for a letter confirming this and offering me a appointment in a clinic where I will once again join the fascinating world of pensioners, listen to their stories and let them tell me I am too young for this to happen to me.
I was thinking about the last time I cried as much as this and I recon it was when Ralph peed all over my bed, I had had a hell of a day at work, it was mid winter and had been pouring with rain, and it was late at night, he clearly had decided it was too dark, cold and wet outside to go potty so he took himself to my bedroom and performed all over my duvet, it was the last straw and I cried for ages!!
At the moment my brain is shooting from one scenario to the next and I don't seem to be able to hold a conversation for long, my friends and family are being fantastic and I love them all dearly. I just wish I knew what was going to happen now, because at the moment I don't have a clue and its as scary as hell.
I tell you what everyone, I am seriously beginning to wonder if there is some-one somewhere with a little doll in a replica of me and they are shoving pins in me until I cant stand it anymore, until I turn on the news and hear that a bomb has gone off on a tube and there has been a dreadful crash on the M5, suddenly my shitty (shitty literally) time isn't quite up there on the scale of horrendous things that change peoples lives.
As you all know I went off for a Colonoscopy last week, I carefully followed the diet plan and started taking the Moviprep the day before....for anyone who hasn't had to take this stuff, its bloody disgusting, it says that it is lemon flavour, well, I didn't taste any lemon! It smells foul, it tastes foul and what it does to your body is also foul. So you make up your 2 litres of revolting medicine by adding water to the sachets they give you, then you drink the whole 2 litres. I drank 1 the day before and the other the morning of the procedure. Within 15 minutes of taking the first few sips I was on the loo. Any talk of going to work was completely out of the question. Apart from my stomach making terrible noises, there was no warning and a couple of times I found myself sitting on the sofa happily listening to rubbish on the telly and then having to leap up, clutching my backside and doing a strange waddle dance to the loo praying there wasnt anyone in there, and god forbid if I had to run upstairs to use the bathroom. This then led of the inevitable soreness, and oh my gawd was it sore!! Thank goodness for wet wipes, sudocream and talcum powder.
I did start to worry about how I was going to get from my house to the hospital with out needing to stop and releave myself at the side of the road but it seems your body empties its self really quickly and before you know it there is literally nothing left.
We get to the hospital in plenty of time for my 2.30 appointment, and we sit there and watch people walk in and hobble out, it would have been funny if I hadn't have been on the list. As time ticked on it occurred to me that people were going in who had arrived after me and after sitting for over an hour I was sure I had been forgotten, just as my fella was about to question the receptionist the nurse came bustling along full of apologies as the receptionist hadn't booked me in....just you wait receptionist lady, your card is marked!!
So then all the boring stuff happens you get admitted, forms get filled in, the nurse terrifies you with a diagram of how the camera will travel up you bum and around the tubes and how uncomfortable it is and the worst scenarios, thank you for that dear nursey, but all I want to do is get this over with so I can eat....I haven't eaten for TWO days I am bloody starving!!
Next my man gets sent to wait in the family area and I am sent to change into a very attractive pair of blue paper shorts with a delightful hole in the back for easy access! The nurse kept reminding me to ensure the hole was at the back...Like I am going to make that mistake, I hardly want a camera shoved up the front passages now do I?
There I am looking all glam in my blue shorts and my fetching gown that ties up at the back, and he only two things I can think about are food and how much of my arse can people see through these shorts!
Once I had the cannula fitted there was no going back, and before I knew it the doctor was asking me to lay on my left side and a nurse was syringing something into the cannula. And that was that! The next thing I remember was waking up in recovery and feeling like I was on cloud nine. The nurse was asking me if I would like a cheese sandwich or biscuits....stupid woman! As I sat there with a massive tin of biscuits another nurse came round to tell me that my tubes were fine but they had taken a biopsy or two and the results of these would take about eight weeks.....who cares!! I have the biggest tin of biscuits in the world.
Then I was sent home, that's when the problems started, I had noticed a big black floater had appeared in my 'good' eye a week or so ago but I put it down to all the stress we have been under, and the effects of the sedation seemed to have made it worse, and I just seem to be taking a long while to get back to being me. The hospital had already told me that I shouldn't go to work Friday, so I stayed at home and struggled to remember which things go in which cupboards and how to spell words that I usually don't think twice about. Saturday I went to Pinehill hospital as per instructed for my follow up appointment only to find the computer system was down and the doctor couldn't look at my notes, so go away and we will send you another appointment when we have the results of the biopsy.
This upset me a bit, one, because he was cranky with me, and two, because its a hell of a walk back into town where I was going to catch the bus home.
So off I stomp, as I walked I noticed that the black floater was blacker and I had started to get little flashes of light at the top of my eye.
I stood in the middle of Hitchin town centre wanting to cry, so I rang my Daughter we had a casual chat which calmed me and I wondered up to Sainsbury where she said she would collect me as soon as she had finished work. (seriously, if you could see how bad it is to type words correctly right now you wouldn't understand what I was writing)
Anyway, to cut a long story shorter, I ended up later that day back in Hitchin with a emergency appointment at Specsavers, they checked my eyes thoroughly but decided I should go to Moorfields where they could check better.
So there I stand at 5.30 on a Saturday afternoon outside Specsavers in the pouring rain weighing up my options. I could go flying off into London and sit in Moorfields A&E for the next few hours, or I could go home and see if can could sleep it off!!
Sounds daft but, I think the trauma from the sedation and the fact that I am pretty sure I am dehydrated AND i am just bloody knackered has put pressure on and its a warning sign to stop and rest for a bit. So with a promise to go to Moorfields with my letter from the ophthalmologist if things get worse, and to go to the Doctors first thing Monday and get some rest, I went home.
Today, my head still isn't working properly and my co-ordination is completely out, the black floater is still there but the flashing light seems to have stopped, I want to take Ralph for a walk but if you could see how long it has taken me to write this blog you will understand that the best place for me is on the sofa today.
I apologise for any spelling mistakes or if parts don't make any sense, I am hoping its a temporary glitch.
Speak Soon xx
well, I certainly wasn't ready for last week! After six weeks summer holiday, returning to work was hard. In fact it gets harder every year and this was by far the toughest.
Today was the first chance I have really had to think about where last week has gone, today was also the first chance I have had to take Ralph for a good long walk, I walk him for about half an hour in the mornings before I go to work, while it is light enough I try to walk him in the evenings, but the weather has been so miserable if I took him over the fields he and I would be covered in mud and soaked to the skin, but this morning the sun was shining and although everywhere was still soggy, he and I went for a good long walk over the fields and far far away!!
This gave us plenty of time to think....he seemed to be thinking about seeing if he could get away with eating another dogs poo and how many sticks he could wee up against, while I was thinking slightly more deeply.
The first two days back at school were teacher training days...for me they are terrifying, exhausting and overwhelming. Our school employ a lot of staff, and four or five times a year they are all crammed into a small hall, for many people its a fab time to chat to colleagues that they haven't seen in a while. This time we all met up in the hall and then some of us were sent elsewhere for different training.
Usually I manage to blend in, but horrifyingly there wasn't much chance of that this time.
Lists were put up on the board at the main entrance advising staff where they needed to be, so you find your name and then it tells you which meetings and training those at the top would like you to attend. Only my name wasn't big enough for me to read, and with half the work force crowded around the board I had to pick someone to look for my name and read my instructions out to me, not only is this humiliating and embarrassing, but as the buzz of everyone chatting starts to get to me, the smells of a freshly cleaned school and my full attention on holding it together and not bursting into tears...the information that was read out went in one ear and straight out of the other, not even stopping in my brain for a second for me to digest it!
So I latch on to my friends who help me find a seat and check I am ok. I sit beside my friend, the noise in the hall of everyone talking at the same time is deafening and disorientating, I cant hear what my friend is saying because my brain is screaming and something is telling me to run away, but then the meeting starts and everyone falls silent....perfect, I can feel my heart beat slowing and my muscles are less tense...and then there are those dreaded words......SO YOU CAN TALK ABOUT IT BETWEEN YOURSELVES FOR A FEW MINUTES......and suddenly I am swamped by noise again, I know that I have moved to perch on the front of the seat of my chair and I am franticly looking around for a way out of this din, I felt like someone had thrown a massive weighted blanket over my head and had parked me in the middle of a football stadium...if I stayed still I couldn't breath but if I tried to move I wouldn't be able too see where I was going and no-one would hear me shout over the noise.
This was a bit of a pattern for the first two days and I don't think I have ever felt so alone and different.
So, during my walk this morning I tried to figure it out, I hadn't been able to repress the memory at all so that makes me think that I have to work harder or deal with it, so I tried to deal with it. At first I had a few selfish tears and did the whole...what's the point?, no-body cares, no-one understands, I am the only person in the WHOLE world who has a hard time!!!......then I pulled myself together and when I started to replay in my mind the experiences of those two days, there were actually people who looked out for me, there were people who found a quiet five minutes to have a chat and there were people who understood what I was going through. Maybe there is a reason I couldn't repress the memory, maybe I am not supposed to! By the time I had come to this conclusion, we had already crossed the bridge over the river and were heading towards the train bridge, I realised that I hadn't noticed the bridge over the river, and I couldn't tell you if the fields full of hay had been cut and bailed yet. This really did upset me, those two days had been so important to me that I had missed what was in front of me, I had missed making new memories, I am not sure I had spoken two words to Ralph, except....NOOOO don't you dare eat that poo!!. When I got to the top of the train bridge I stopped and leaned on the railings, we were very high up and the wind was so strong it was making my ears ache, I purposefully paid attention to all the noises around me and the smells in the air, I looked down at Ralph and he was sitting beside me with his nose through the railings, he looked so funny trying to copy me, i ruffled his coat and we ran along the bridge to the other set of steps, Ralph loved it, it was so windy and I felt like a kid!!.....when I reached the bottom of the steps I had to smile as I realised I had just made a memory, its so easy to make happy memories, maybe sometimes the bad memories stay in our heads to remind us to make good ones!!
I am not sure about the kind of memories that will be made next week as I trundle off for a colonoscopy, but at least I will get a answer to the constant ache in my belly and as to why I don't seem to be able to eat many food anymore without rushing to the loo twenty minutes later, I miss my favourite foods... fruit, nuts and veg. So fingers crossed for Thursday, and lets hope it is a memory I can repress easily.
Speak soon xx
