Battling the Blues.

A few months ago I posted a blog which represented a place I thought I was at, followed by an apology because I really wasn't there. I've taken sometime away from blogging to sort myself out. Sometimes it helps and sometimes it doesn't. Putting feelings to pen and paper... Well typeface and a screen is difficult. It like, flows out of you and then you hit publish, and its there for the world to see. I originally set this blog up anonymously, however, I knew this would be a way to connect my true feelings to those who care about me most. I can't sit having a cup of tea and chat about this stuff openly. So any one who thinks I'm being to open you don't have to read this. Its been almost 6 weeks since my last update but I'm back on it! I'm ready to open my heart to you whilst listening to Mr Ezra (I'll refrain from day dreaming too much!) First of all I want to say thank you. Over 740 glorious people have read my blog since January and I am absolutely amazed by this as well as being incredibly grateful for all the well wishers, lovely messages and general support. Your all so lovely! I never ever thought those kind of numbers were possible for my awful writing! So if you know me or read my blog regularly you will know that my life is an endless spiral of drama! Some things that happen are well hilarious others not so. I should be writing episodes of EastEnders with all my stories! Well here's a new addition to my on going list of health issues. I have recently been suffering with my breathing and now I'm an asthmatic... I wasn't happy about how this came about, I spent 12 hours struggling to breathe and refusing to go the hospital. I'd had a bad chest for a while and nothing seemed to shift the stupid cough. Like many others I'm on my 3rd cold of the year!! Bloody weather. My GP had me escort myself to hospital whilst tachycardic and with my SATs really low - I can't even remember getting there! They did a number of tests and ruled out another PE, stuck me on a nebuliser and sent me on my way, whilst projectile vomiting,(sorry bristol road users for holding up rush hour traffic to make pavement pizzas) for the GP to prescribe a variety of puffers! That being said the hospital were quick and since I've had the puffers my general breathing has improved. I'm not coughing as much but can now recognise when I need a good puff or when I'm just having an anxiety attack. (I say "just" like the feeling of impending doom isn't much, but compared to another asthma attack its dealable.) So last time I discussed the traumatic tests I was subjected to in London. I had to wait aggggeeeeeesss for results as they needed to be processed by every Tom, Dick and Harry apparently. Well first off the original doctor I saw was so so nice, made me feel at ease and said he would see me at my next appointments. Don't get me wrong there are a lot of people worse off and more urgent matters but he made me feel like he would help me and he didn't. He walked past me and another person came and spoke to me, I had to go through every detail of the past 14 months to yet another doctor I would never see again. Next time I go will likely be the same, I think I've had to speak to around 15-20 different doctors atleast about my issue, which is shocking. The lack of consistency really frustrates me, it feels as though there is no care or compassion. I really feel for doctors, if only the NHS was how Holby portrays care and doctors were given the time to help you. Going to these appointments is hard. I have to arrange transport, accommodation, a buddy to come with me and mentally psych myself up to be knocked around, tutted at, pushed and pulled about because everyone wanted to be somewhere 5 minutes ago! I used to love London, the amazing sites, wonderful food and musical theatre. Now I hate it. When did people become so rude and impatient? Now to the point, my eyes themselves are healthy. Bizarre, but therefore indicating the problem may be further back in the brain. A neuro opthalmologist will see me in June. If they can't work out what's going on then it could still be the drusen or "one of them things" So in terms of my vision, other than a noticeable decline, I don't have an awful lot to report. I'm still seeing FOCUS blind charity almost weekly and honestly they have been incredible! This charity does not get enough recognition, they've made me feel supported and arranged a variety of appointments and home improvements. I've had handrails fitted in my shower and bath yesterday to help me and i didn't have to pay a thing! I also have this funky device called a liquid level indicator. I can't cope without tea and when I've been home alone its been tough and dangerous, now I'm like a tea ninja, no stopping me! It sits over the lip of a mug and when you get near the top it alarms and vibrates so you don't over poor. How cool! These are the little things that brilliant minds have created so people can maintain independence and these little things make me so so happy. Its a little boost of confidence and inside your like "hell yeah, i can still do this". But these things no one really knows about and they should. I've had a busy few weeks and those who know me would of seen my check ins. I'm trying to get out more, keep occupied and learn that going out alone isn't as daunting as it once was. Yeah my depression is still lingering but I can cope. I had a really really bad day a few weeks ago, for a few days I knew it was coming. I was over sensitive, indecisive and generally miserable. Then I couldn't make a simple decision and it was the straw that broke the camels back. The darkness came and I wanted to disappear (I feel stupid saying this but when it all gets too much you feel out of control) I screamed and I cried and I smashed things (then cleaned them up) then cried some more because I broke things and it was an endless loop. I am only thankful that I wasn't alone and my mental health worker could not have chose a better time to call. My sister bundled me into her car with a suitcase.I will always be grateful that she did this because the thought of what may have happened if I was alone scares me. But I will always be sorry that she had to see her big sister like that and that she had to deal with such a monster. I calmed down after a nap, a cup of tea and a cuddle. Then I felt sick, stupid for being so awful but its like you black out in a rage and you can't remember why you were behaving like that. I think my mental state has improved since this incident. I needed to explode to get it out. I feel happier. It will take a while, I'll carry on the meds, I'll carry on with therapy and probably have more bad days but as long as the good days out weigh the bad then thats OK with me . Loosing my vision isn't the worse thing, the worse thing is not having answers. When I got pregnant at 17 it was scary but I did it, my boy is 8 this year and it has flown. When he was 6 months old I got a job volunteering in a laboratory, I was then employed by the HPA and went to university to study. I then left food microbiology to get experience in clinical microbiology which was such a challenge but I loved it. Yes, loved. After having assessments in work I am no longer safe to work in the laboratory. This broke my heart, I have no experience in any other industry and have a specific skill set that I can no longer use. Its sad. But it could be a good thing. One day at a time and all that jazz! Anyway, so we've moved the wedding forward. In January we made the decision to not waste more time incase things get worse. This had kept me busy and even though we have 9 months to go we are pretty much done. Everything booked, cake ordered, invites ready to go. Now I can focus on shifting some pounds and not stressing that things aren't done. I miss cake at the moment. I'm a comfort eater and dieting is so so hard. Well, when I get awarded miss slinky it will be worth it (i can dream right?!) The Evening Mail are publishing a piece about my condition, moving the wedding and the impact it has had on my life. There are other people suffering and probably feeling just like I am. There is a clear gap in support groups for sensory impairment and I want to change this. Just a way for people to share helpful tips, give information about charities and generally have a network of people you can talk to or meet for coffee. If you actively read my blog and think this would be a good idea then please let me know and if you know anyone or think that you would benefit from this then please contact me and we can start a group. I'm going to leave you with that for now, I was going to tell you how I almost died from Cayenne pepper. But that's a story for another day I need to go bathe and binge watch Nashville!
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Send me to the scrap yard

Okay so I'm back.
I have no idea how to begin this blog post. Usually everything flows but the past few days I have been sitting and thinking of ways to draw you in. Nothing came to me. My mind just isn't functioning right now and whether its an accumulation of fatigue, illness or medication I just don't know.
So my days the past 2 weeks have began at 3am. Why so early you may ask? My body hates me. Or on a more creative level it could be a sign that I am actually living in a nightmare and in a few nights I'll see 3am on the clock and creepy voices will start beckoning me to a basement I never knew I had.I'll keep you in the loop on that one... 
Any one who knows me knows I'm an 11-7am sleeper. Straight through and if I'm not asleep by 11, with the exception of being  completely wasted,  you will notice how much of a grumpy bitch I am. But now I wake up at 3... Then 4... Then 5... So on and so forth until I physically have to drag my sorry ass out of bed because I cannot wait any longer to pee. 

I had a trip to Moore field's hospital the middle of January. Whilst there they conducted an array of bizarre tests in electro physiology. They are trying to determine whether my sight loss is caused by a fault in electric signals between my brain and eyes. They were awful! Not in a painful manor but more a case of severe boredom, I was sat with probes on my head staring at computers for 3 hours. The best part however, was having gold foils put under my eyelids which did not want to stay put- they were replaced around 30 times! Reason given was that I have funny shaped eye balls? Needless to say the next day I had the migraine to trump all migraines I have ever had.
My head wanted to explode.
This is a typical reaction whenever I have my eyes tested, its expected that the next day I will feel like shit. Like I've got the mother of all  hangovers only without the good night out and cringy memories.
My results will be ready for my next 2 day adventure to the hospital in March. The tooing and throwing is stressful enough but my bank is not enjoying the hit with additional train fair, tube costs and ridiculously over priced London hotels (many of which are just complete dives.)
I hope they have found a reason. If not the next step is to neurology.
I can't handle being sent to another specialist or another department for more tests and more waiting.
I am currently under 4 different consultants, not including my amazing occupational health doctor, GP and mental health department.
As many of you know the past 2 years my health took a complete dive. It began with my kidneys, they were constantly infected and I was passing out, non-responsive to antibiotics, every test, scan and camera I had came back negative, all but my liver. I had extensive tests which led to having surgery for my gallbladder to be removed and during surgery my liver was checked. My post op bloods were erratic and the doctor was concerned. A day surgery turned into a week of hospitalisation, non stop vomiting due to an allergic reaction to anesthetic. I was later told I may have cirrhosis and the next smart NHS move was to stick me on a non-urgent 4 month waiting list to see a liver specialist.
Yes, I was told my liver could be dieing but had to wait 4 months to see any one about it, doesn't make sense but it was an awful awful wait. As someone who suffers with anxiety it was horrible, I was worried, paranoid and scared. Good news was that I do not have cirrhosis but what I do have is non-alcoholic liver disease. Thus meaning my liver causes me a lot of pain, I have flare ups where I'm in agony and the excess stress causes me to be completely run down and my kidneys act up. Last year I was prescribed around 12-15 courses of different antibiotic's.
Things have calmed down lately, i still get bad pain but its the least of my worries. I will be honest though because I have neglected myself the past few months: I eat crap and still drink alcohol(I don't get drunk, but I have a few cocktails and switch to water. I need to eat better, cut out the wine and exercise more). But then I think what's the point.
Every time I think things are going to be OK I just get knocked back down again.
Next on the list is an endocrinologist, a fancy name for the lovely Italian man who is monitoring my hormones. Alongside my shitty liver problems and reduced vision I've recently been diagnosed with hyperthyroidism, I'm not entirely sure what this means but I was constantly tired, sweaty and gaining weight. I am now on medication and this doctor will monitor my hormone levels.
Oh he also has the job of trying to work out why I am currently infertile.
Something I've not shared with many people because it was easier to pretend it wasn't an issue. But getting engaged increases the chances of people asking when your gonna pop one out! I'm ridiculously broody so if I could trust me I would! I am more hopeful than with any of my health issues that this will be fixed or I can at least have some form of treatment.

I know I'm not the only one with these issues but I'm being open and honest. Not for sympathy but for people to know they are not alone.
I had my time feeling like I'm alone but I know I am not.
I know the issues I have are trivial compared to the ways others suffer.
The mix of things I have going on makes me feel less like a person every day.
I take tablets to be able to eat without being in pain.
I take tablets to sleep.
I take tablets to have the correct hormonal balance that I can't produce on my own.
I take tablets to stop me going off the rails and to help me feel like a "normal" person.
I feel like I'm broken.
I'm fed up of being in pain.
I'm fed up off waking up and knowing today will be a "bad" day.

God damn it where is doctor House when you need him?!

One major thing I have been able to do, is recognise my anxiety attack trigger's: crowds, not knowing where I am going, heavy noise and going out the house alone. My support worker is helping me with these. For obvious reasons I am not comfortable going out alone at the moment.
This week I find out about mobility training as I will be getting a cane.

I keep trying to be OK when I'm out and its like I lull myself into a false sense of security. I smile when people push me out the way, or act polite when I get tripped and knocked. But then I get home and it hits me. Its stifling, I can't breath properly, I feel this sense of doom like I'm going to die, I want to cry, vomit and scream at the same time. I want to curl in a ball and never go outside again.
But all I can do is breathe and wait for the anxiety to pass. Then be brave and do it again. Go on a bus, do the school run, go the shop alone (thinking about these things is nauseating) baby steps at the moment and it will take time but I have to try and do everything I can to get through this, I will not let all my issues and sadness consume me.
Because if I don't help myself then how can I try to help others?

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I'm sorry

I have an apology to make.
I don't think my last post was a true portrayal of how I was really feeling.
But I guess that is part the reason why we're human. We have a need to pretend were OK, to be optimistic and put on a facade to the world so no one asks questions. Well I can't.

I don't want to say I lied but my previous post was more of a forecast of a place I thought I was at but really wasn't.  I've been quiet the past few weeks and not blogged, my new years resolution was to post once weekly (and loose weight, but I'm clearly failing at both) sorry !

I have taken time the past fortnight to try and recollect myself after an emotional breakdown in the middle of a corridor at work. Yes, not appropriate, not professional but it was a certainty that it was going to happen.
It's not that I don't like being told I'm inspiring, nor that I'm brave or strong, though whilst it may not offend me I guess part of me wants to show that persona and be like "yeah, I am aren't I?" But it did not help at all. I just pushed everything to the back of my mind and carried on like I normally would, however normal life isn't the same anymore and this is when I cracked, the shear struggle of pretending I was all good was silly, I guess it was denial .I bottled everything up but then suddenly the cork popped and I was this snivelling mess, my once neatly placed make-up was covering my face making me  resemble Alice Cooper as I cried to my closest friends about how I hated everything.
I hate what is happening.
I hate that its happening to me and I hate that there is no reason for this to be happening or a diagnosis. I hate hate hate it.

So as you have probably guessed by now I am depressed.

I'm not myself and its recognisable to those around me. I'm staying in bed for days because I hate being alone and the motivation to get up and go is just not there, my bed is a safe place I can hide and not leaving it means I don't have to go out and I don't have to face the world.. I'm either avoiding meals because I have no appetite or im eating too much because of an urge to consume my body weight in chocolate I'm either sleeping too much or not at all because my mind is racing. Nothing is satisfying or motivating and I don't know how I feel any more about anything .

I have however had the support I've needed and despite feeling low I do feel loved and cared about.
People have gone above and beyond their call of duty to make sure I'm OK and that I haven't been left at home alone.
My best friend even took time out of work to stay with me, to come to London for tests with me and helped round the house and with Archie, to take the load off of me and David. She cooked dinner and kept me entertained when David was studying hard. She definitely has made a massive difference and along with all my other friends who have rallied around I will never be able to repay you and show how grateful me and David are. You have kept me busy, distracted, made me laugh, spoilt me, let me cry when I've needed to and suffered those moments when I'm anxious and I don't want to talk and all of you are amazing people, you've saved me.
I am working on my emotions with my support worker. I have regular meetings, coping strategies, counselling and medication.
I have dropped out of university to get my life back on track and reduce additional stress. Maybe I'll regret it, maybe I won't, but for now it's best.

I'm not going to say much else but I'll be back blogging weekly in time and will have lots to tell you about. More glorious appointments and assessments to talk through.

Thank you all for your continued support.

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"Call me Sherlock"

The past few weeks have been odd.
I'm trying to pick myself up and keep life as normal as possible. The increasing difficulty however is the sheer lack of awareness of sight impairment, disability and the issues surrounding these! This is not necessarily down to ignorance but there is no awareness out there so everything i am discussing and learning is a major learning curve for me too.
I am pretty open about my current issue and have no issue discussing or answering questions people have - it actually helps me have a better understanding. Everything is crazy at the moment and anyone who knows me knows how tough, busy and stressful the last week has been. Again a million appointments but mainly to sort out my registration and arrange assessments so I can still work .
Now let me tell you about the registration process for sight impaired and severely sight impaired people. Firstly, i had about 10-12 opthalmologist appointments last year, excluding A&E visits and outpatient tests, Solihull hospital and Moore field's in london took me under the wings of their best professors to work out what the hell is going on.
Solihull hospital filled out a form called a CV1 after almost a year of decline, this documents that I meet criteria to be registered as disabled. This then goes to social services and my GP, social services then assess my home life and make adaptations to help me improve my independence and to ensure I am safe. (This does not mean, however, that David can get out of making me tea on tap, sorry!)
I am still waiting for my assessment at home but I have tried to make some changes by researching and purchasing items that will help. Not only did I get a swanky bright blue dinner service but i also purchased a touch lamp. Touch lamps are GENIUS.
Do you know how difficult it is to line plug pins up with the little holes! It also means I can increase the light or decrease the brightness dependant on what i am doing. A brighter dinner set is brilliant for contrast and bland food stands out more. I don't struggle to eat and trust me the only exercise I seem to be participating in at the moment is heavy lifting of fork to mouth ...

I started seeing a support worked called an 'ECLO' not many people know but these support workers are available through opthamology departments without a referal and you don't need to be registered to visit them. But you would never know they were there unless you ask- Brilliant!
I was a bit close minded at first but by explaining the registration process and the range of equipment I could get to help me, including the emotional support available to me and my partner, she really increased my confidence.
I have come to realise that I've been selfish and it  isn't just happening to me but those close to me who put up with the outbursts of tears, the miserableness and my ever increasing demand for tea and cuddles. From my son who doesn't understand why I can't play the fiddly board games or verse him in a super Mario cart race on the Wii U... to my future husband who could easily run right now and choose an unburdened life unstead of helping me with stupid things like cooking, getting in and out of the shower and making hot drinks.[ I've been your tea lady since day one - Dave]
Anyway, the ECLO gave me multiple contact numbers and details so I could ask her any questions I needed to day or night. How nice of her! I was also given these tiny rubber squares called 'bump dots' and yes the name is the function, they are bumpy dots you can feel instead of looking for things. For example I put one on the photocopier button and by where I put my key in my locker. I also have two on the oven so I know where to turn the dial to.
Little things that make life a little easier.
This also led to a referral to "Focus" blind charity. These charities are wonderful. The information and equipment they can provide is incredible. They have given me two magnifying glasses for work. I personally thought I could nip to Poundland to grab one but that's not the case - they have to be prescribed to your needs. They are amazing , no magnifying glass can improve the terrible terrible handwriting of some people but I can actually read more things without squinting or without literally putting it against my eye. Plus I look like a pretty cool detective, just get me a deerstalker and call me Sherlock...

You may see people out and about with a white cane. To me the most obvious symbol that a person is sight impaired. But no. We are all wrong. Apparently carrying a stick is a sign you are either a) a pimp b) a portable poledancer or c) are conforming to a new ridiculous fashion trend, alongside the man choker...  You most certainly don't need assistance with a variety of everyday tasks including getting off the train or asking what number bus is coming. I have started to hate going out alone, the fact that i can be in a crowd of people and not see their faces is daunting enough. Knowing that I have been out alone, fallen on my face and been laughed at instead of helped, ignored or been given the look of frustration when asking for help really knocks your confidence. Maybe I approached people on a bad day and I know not everyone is like that.

My cane is not floor length it is called a "symbol cane" the function being it's name. They're pretty good at that! Anyway as I do not know if I need mobility training till assessment for now this is my new Buddy. To try and explain what I can see is difficult, it's like looking through a fog constantly and my peripheral vision, particularly in my left eye, is awful, its just darkness. My pupils often appear slightly different sizes or after straining for so long my eyes will be bloodshot  and my head pounding .  When I walk, if i try look at the floor, I feel drunk and trip or miss pot holes. I can see the funny side to this, obviously, but my ankles can't! To have a floor length cane with a ball you need to be trained on how to use it via social services. My cane hangs around my wrist and comes to just below my knee I use it when I am in busy places or with my boy alone.
Hopefully I hear from social services soon so everything can fall into place.

The final part of registration is the "benefits" but the system is stupid!
"Your disability is vision loss- great! We will send you a 24 page booklet of questions you need to hand write and send evidence with, but won't worry it'll be in large print...you my also have to travel to see us so we can visually access if you are disabled"
a complete and utter ball-ache. Then you get arsey letters moaning at you because you have taken too long to fill the paper work out! What's with that?!
I can't see well, i have a physical certificate off  of a consultant stating this yet they need me to hand write how every aspect of my life has changed and how its affected me in a timely fashion with evidence...is that not obvious? It feels unnecessary and wanting me to travel to them, wherever that may be (when I can just about have the courage to get the bus to work round the corner) is stupid.
But until that is sorted I cannot get discounted rail and bus, which would save me and my companion a lot of money to travel to and from london for my endless stream of appointments - bright side of trips to London though is tasty food from the Chinese quarter :)

Life will get better, well, at least easier...I hope. Wouldn't it be great if at school we were taught the basics to solve real problems and how to deal with real tough life situations? Knowing the different types of tectonic plates is not helping me out here at all.
My week improved as I finally found my wedding dress! The most beautiful dress I will ever own, I got emotional, my mom welled up and it put me on a high that I needed. I felt pretty and like a bride! The next year will blur, trying to plan everything and hand make invites will be a test but I'll just stay away from the scissors and attempt to observe, I don't fancy loosing any fingers as well!
I then took a short break with a life-long buddy. It helped a lot, we walked, talked, laughed, played pool and ate so much it hurt... I need to spend more time with him. I don't think he realises how much I miss his company. Even when he was driving me home, after pulling up at the services, finding a puncture and being sat in the cold for an hour, we were laughing and singing to noughties pop and it was fun. I need to focus more on times like this, spend more time with family and friends having a laugh, making memories and enjoying life. There's always someone worse off and I hope you can all take a little piece of knowledge with you this week!

Go fourth and educate :D

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Spot in the dark

"What is that?"
Have you ever had one of those moments when you think life is going great? Only then bang out of nowhere everything changes?
Have you had a moment, incident or day which seemed insignificant at the time, yet was actually the beginning of one of the most testing periods of your life?

Hi, I am a mid-20's tea-fuelled mother of one living with my fiance, son and our beloved pet cat in the West Midlands. I work as a laboratory technician when I'm not shopping, reading a good book or getting messy in the kitchen.

 However, February 12th 2016 was the day my life started a plunge into a darkening descent.

It began with a black spot.

 A tiny floater that I presumed was due to sheer exhaustion and excessive computer usage. That was my warning ... little did I know the tiny spot was the start of a year of mayhem.

I'm not going to bore you with the ins and outs of every appointment as I've had so many that between reciting the outcomes to family and friends whilst also trying to absorb everything and carry on with my daily life, Im fed up of repeating it. It seems almost surreal now, that it's been told so many times its like talking about a really bad dream, the kind where I just can't wake up.
This is not a blog to moan or rant(but there will be plenty)  but to share my new hazy perspective of the world, to support people and share what I have learnt.

Within 10 months my visual acuity had dropped from 6\12 to 5\75. Now to most people that means nothing , think of it this way : what you can see in 75 metres I can only see in 5. Bad?Well yes but I should be glad Im not completely blind but the worst part about all this is that no one can tell me if that is going to happen.
It has been a scary descent, firstly I got my driving license revoked- man was I pissed! 3 years driving then bam I'm back to buses and trains and the endless coughs and colds that come with it. I've fallen over the most blatant things like boxes and stumps,  lost the confidence to go anywhere alone and lost all faith that things will improve.
Every morning I wake up and I'm almost scared to open my eyes.

I'm a medical mystery. Between 2 professors and a myriad number of tests (technology these days is amazing*) my eyes are healthy. They just don't want to work... Kind of like me on a Monday morning I guess.
Its a cloudiness that blurs everything, like looking through a fog. Nothing quite seems to have depth or sharpness to it.

*seeing a 3D image of my eye ball has left me in awe of the medical imaging world. Absoloutly incredible.

I was registered as sight Impaired 3 weeks ago. Since then I have crumbled, I'm this emotional wreck who can't get her head around anything but hey atleast I am admiting it now.
Sight loss registration is like becoming a member of a club, except there is no bingo night or coach trips to the seaside. Your just this name on a list that entitles you to 'perks'. Except the only perk i want is a diagnosis, a cure or a way to stop this. I'm sorry but a peak time bus pass and and a blue badge just don't cut it.
I guess the way i feel is like I'm mourning for  what I have lost, for the independence  I am losing and for what further lose there may be.

I've always been an optomist a generally happy person but for now I need to be selfish and I need to adapt to my new way of life and I need to discover what support is out there for my to claw back independence.
I need my brief moment to be sad, then I can pick myself up and be prepared for what is to come.
Please dont get me wrong though, i know It's not all doom and gloom. I have an amazing network of family and friends rallying around me, a best mate who is always there for me and who makes the world's best tea and nachos.
The most loving and affectionate son, when he's not driving me crazy.
But not forgetting my incredible fiance. The man who is choosing to support me, going through this with me, is there to pick me up when times are rough but most importantly to love me. I would not be the women I am today without him.
Yes that also means I've got a wedding to plan.

 I will be using this blog as an escape. To help me move forward and for all the laughs, cries, life adaptations and moments I want to share.
The next few weeks will be testing, multiple assessments, more appointments and hopefully some progress... I only hope you guys stick with me through this.