going to need some support!(do not read if you have h/a about eyes)

[bluesparkle]

ok ive put off posting because I hate posting about me ! but ive decided I cant do this on my own....
I am scared and at times feel really alone.
this may come out a little long winded but will try to keep it brief.
a week ago last Thursday my sight went funny, it went dark and then blotchy and remained that way for a few days I just thought panic was rearing its head again, it started to become painful and I felt unwell so off I went to the doctors. saw the nurse (only appointment I could get) she then called a doctor in and an hour later I was being referred to the hospital.
after many many tests and scans ,( I was very frightened but somehow stuck it out) I was told I had ischemic crvo, in English lots of my veins in my right eye are blocked and theres some other stuff floating in there and a problem with my artery.it hurts and feels "full" and that's the blood behind it. I was sent for a fasting blood test the next day (should have results tomorrow) as they don't know what caused it and if it clotted that quick it could happen else where in my body.
they said not to be alarmed at feeling rubbish my brain has to get used to it and its been a huge shock, I was expecting eye drops and to be sent home.
anyway I can not drive :-( oh my god!!!! I have to drive 10 miles to work and back only took my new job on end feb, and also I drive a lot for my mates taxi firm and often run it for him. I do not know yet if I will ever drive again I just cant face that thought right now so am just going from appointment to appointment and taking one at a time.
but no matter how hard I try at the moment I keep getting so upset and frustrated.
I mis judge things and trip and drop things, just yesterday I ate my tea and then realised half of it was down me, at first I could laugh about it but now I realise this could be for life and im scared really scared.
also the amount of appointments im going to have and in time injections and lasers to stop it getting worse(they cant cure it) is scaring me silly, how can I face all this and keep mr anx and mr panic away from me.
sorry I realise I have gone on but I don't know what to do next.

[Annie0904]

I am really sorry to hear about this and I guess there is nothing really I can do to help other than offer you support and hugs. :hugs: I think when we get these kind of things to deal with in life we do find the strength and courage to help us through it. Don't look to far ahead at all the appointments and treatments. Just take it one at a time as you have mentioned yourself. :hugs:

[RosieXXX]

Hello Rach,

I am sorry to hear you have this problem; it must have come as a terrible shock, and of course it is going to take time to come to terms with it. At the moment you are still in the early stages of findiing out more, and i think your approach of taking one appointment at a time and trying not to let your mind race ahead of itself is the only way to go. It must be extremely worrying for you, but i have no doubt as the specialists find out more you will be given the best possible advice on how this condition can be managed. The unknown can be worse than actually knowing exactly where you stand; and i think once you have a better idea of how this is to be treated you will feel more in control. As Annie says, we do find the strength and courage to help us through.

Please let me know how you get on xx

[bluesparkle]

thank you both ....
im trying not to be so hard on myself and letting it all sink in and if I fancy a cry then I let the tears fall but I want to be the strong me again.... but its great just knowing people care
x

[aggiecuttler]

Its never easy having hurdles to cross, but you are in the right hands and being looked after, dont cross the not driving bridge yet i have had to stop driving for the time being due to brain surgery and it was hard at the start but i have got used to it, take one step at a time and give yourself time to get your head right, its early days blessings

[Speranza]

So sorry to hear this, I can't do anything other than offer my love and sympathy and let you know I shall be here online for you as you go through this.

xxx

[venusbluejeans]

Rach,

Everything you are feeling is completely normal, I think everyone would feel like you are feeling like you are feeling if they were given the same news you had been given.

You are used to be being the strong one and looking after the others, maybe it is time for you to share and let others take some off the strain off you.

I know you are a private person and feel like you are being a burden on people if you post on here, but hun that is what it is for, for each and everyone of us to post and support each other in what we are going through.

Crap things happen in life and we do learn to cope or live with things we may not want to.....it just takes time to adjust to the situations we find ourselves in.

It does seem really hard and frightening for you at the minute, kind of walking into the unknown BUT you are stronger than what you think you are!!

Whatever happens we will be here for you, you know that you just have to shout one of us and you can rant away till the cows come home......please don't keep it bottled up as things ALWAYS seem worse when you do not share them.

You know where I am, give me a shout if you need a rant and rave

Emmz xxxx


http://3.bp.blogspot.com/-JbHWjb1zeH0/UUabGuMQYAI/AAAAAAAAA4E/jHtocPfpy3Q/s400/winnie_the_pooh__72811_zoom.jpg

[bluesparkle]

thank you so much :)
I hate asking for help....
and emmz I want that quote from pooh as a screen saver on my phone just trying to work out how
x

[nomorepanic]

Rach

I am so sorry to hear this news. I have never heard of the condition but it sounds horrible when it affects your vision.

I just wanted to let you know that I am here for you if you need a chat or a rant or just a hug.

You have always been so kind to me and I wish I could do more for you now.

xxxxx

[Moley]

Am really sorry to hear your troubles. Wish there was something i do could for you. Am here if you need support.

[bluesparkle]

thank you :)
just knowing you are there is enough, knowing im not facing this alone.
I went to work today and we are going to sit down and talk about my job properly tomorrow but for now as long as i can get lifts my job is safe it was good to be there and busy but at the same time upsetting as obviously it was harder to do things.
my blood tests have come back ok .... but im not sure if that's a good thing or not as there are still no answers as to what is causing this.
I am exhausted and grumpy today lol
x

[Elen]

Good news that your job is safe, that must be a weight off your mind.

It will get easier to do things I promise you, its still very early days for you and you have to learn how to cope.

Did your doctor give you an indication of what happens next?

Always here for you hun so don't be scared to ask. tc xxx

[bluesparkle]

hi
well 2 weeks have gone by and I have an appointment at the opticians tomorrow. That is just for a field test and a quick check up.
I have found the last few days a real struggle, at first this was funny, well you know what I mean I could laugh at my self bumping into things and dropping things etc but the novelty has worn off and I feel rubbish, tired and fed up.
I have to wait another 2 weeks just over to see my consultant.
panic and anxiety have taken hold , im on edge all the time not necessarily about my eyes just in general all my old worries have come back and I cant control it. I cant believe it I had these under control until this happened and I want to be back in control.

[Elen]

Rach honey, be kind to yourself, your whole world has been turned upside down.

Tbh I think that you have coped brilliantly but I am not surprised to hear that your anxiety is playing up again.

One day at a time honey, and one step at a time.

tc xxx

[Speranza]

You are okay... it is a hard time to go through. You are doing amazingly well. On the days when it's extra hard, just take it a minute at a time. xxx

[RosieXXX]

Hello Rach,

It isn't surprising your anxiety is running high and you are feeling so tired and low - do try to treat yourself gently; make sure you have as much rest as you can, and don't make huge demands upon yourself.

Once you have seen your consultant you will have a better idea about how they are going to treat your condition; you will have a plan of action, which i think will help you to take the next step forward, and you will begin to feel more in control.

This is a very difficult time for you, but i think you are managing well - you will come through this Rach, and we are all here to help support you. Let us know how you get on tomorrow xx

[bluesparkle]

thank you for your support
I still cant drive and have to go back next Thursday for another test.
he said it was difficult to tell from the results as they were all over the place, well I tried to tell him that when I arrived.
anyway Im seeing someone different on Thursday.
I am suffering headaches which I just cant shift and was very tempted to ring the doctor but as usual chickened out, I think if its no better by Monday I will have to just get it checked though as its been over 2 weeks now since this first started.
it is all still very scary I guess im just impatient.
thank you for putting up with me and my moaning.
rach
x

[RosieXXX]

Hello Rach,

How frustrating not being able to find out a little more from the optician today - hopefully the optician next Thursday, will get a better idea from your results.

If your headaches continue you should definitely make an appointment to see the doctor; i am sure they will be able to help, and i think it will do you good to talk things through too, don't be afraid to ask for support.

At the moment you are in a state of limbo waiting to find out more, and of course that must be very frustrating. Once you have seen the consultant you will have a few more answers, and i think it will become a little easier for you.

I hope you manage to have a restful weekend Rach x

[bluesparkle]

hi
just thought id update my post and also leave a big thank you to everyone for their support.
I have been to my appointment at the hospital today and the crvo is ok it has not got any worse and has even lessened slightly (although its not meant to do that lol).they are pleased with my sight so that's good, this is something I will have to live with and may flare up again but they see me every 2 months to keep a check on it, im just going to get on with my life now, I need to make a few adjustments and first job is an anti glare thing for my computer as when im tired I cant read it lol. I have been to the opticians as well today and am getting some glasses for driving and some for reading as crvo affected my prominent eye .anyway yes driving :) I hope to be back on the road after a few more appointments and maybe also taxis too (but their rules a very high) but one step at a time hey!
I will always struggle to manage light so will just have to have sunglasses at the ready.
just one thing though they don't understand why im in pain and get headaches so I have to see my own doctor as soon as I can get an appointment which isn't proving easy, my blood pressure is high so there is probably some more things to look into but im not scared at all just want answers its been 11 weeks of hell.
I know this all sounds a bit muddled but im finally feeling positive.
if someone told me a year or so ago I would have to cope with this I would have run a mile but it just proves we can do anything if we set our minds to it, no I don't like the appointments or the hospital but mr anx and mr p have a choice they can come with me or bog off cos im doing it anyway.
so I want to say a massive THANK YOU for all your support I couldn't have hung in there somedays without you lot and thank you to all in chat for putting up with me.
rach
x

[Elen]

Rach, so lovely to hear you sounding positive, I can only imagine how bad you have been feeling recently.

Brilliant news re the driving, that will give you your independence back.

You have dealt with all of this brilliantly and I hope that you are suitably proud of yourself.

So pleased for you.

Elen xxx

[RosieXXX]

:yesyes::hugs:xx

[Moley]

so glad to hear some good news for you.

[bluesparkle]

thank you :)

knowing people care helps so much.
I have a daft question now: I have the doctors tomorrow at 450pm and im getting in a pickle lol
im not sure what to say or ask, yes I know daft !
im so used to being told that nothing is wrong or just palmed off with anything but I need answers now.
I know I need to ask about my blood pressure that's the easy bit but what about all the other symptoms and what if they don't believe me.
I can write a list infact I did that but binned it cos it just looked like a list of made up symptoms.
anyone got any good advice.
rach
x

[Annie0904]

Rach, all I can suggest is to write that list again and take it with you. I am sure they will believe. when we are anxious we forget what we want to say so it is much better to write it down. :hugs::hugs::hugs: xx