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Doonhamer

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  1. Hi Sarah, Gosh - incredible what you've been having to endure! Here's hoping that you have no more symptoms and closing down of that bit of case in Sept 2021! I'm guessing that's the lowest options for you. Hope you get the appointments rationalised. So much to deal with. Fiona xx
  2. The ophthalmic consultant did some tests on my eyes in April last year - ones where they add drops, but nothing I'd ever had before in the optician that also needed drops - sorry I can't remember the names. The pictures showed clearly that there were some blank spots on both eyes - but also in a way that suggested that it might not be permanent. The only way to check this is to see this again. By the end of June, I was able to pass driving, and that was key. So I don't know whether there is still any permanent blank spots given that they got past my driving. If I was unable to drive, they would need to keep checking this. The consultant was actually a bit cross with me for demanding my DVLA test as he thought I could still be blind despite my test (he'd been unable to schedule an appointment each month, so I forced it). For me, the double vision was worse. I'm less sure about what causes any blurring. I think that the left eye is still less 'clear' (colours etc) than the right eye, but not a problem. That's good that you will have some further tests, they might get to the bottom of that for you. Just annoying for you as everything will appear like a long wait. For your daughter - well, what's good is that you are still here for her. You feel terrible just now, but you *are* here and she has got you.
  3. Thanks everyone - really amazed at all of this - something practicing that might make a difference. I've found a gap that I haven't needed before, and I had no idea how to go about this, but you've got ways in which to attempt this. I'm thinking of going to discuss with HR in the NHS (a different job, a third application without a response). I might ask them generally about whether they require this or not. In the meantime I will definitely do the audio book / summarising - this is a great start. Funny... the person trying to sell the job made me want the job more, which had a detrimental effect! If I hadn't cared about the job I wouldn't have been nervous. 😳
  4. The blinds spots weren't defined properly as I couldn't see anything at the time. I really should get them to do the same scans (not done since April) to see what has improved. Only I've had since then is the optometrist and the DVLA testing. There isn't any blind spots now, but I still get flashing. It does seem that timing needs to be at least 12-18 months with no intervention. If you get proper test, that will help a fair amount. Hope this all goes well! xx
  5. Hi Sarah, 12 months... very similar to me - will be that in February. Thanks so much for your information - you understand the problem exactly! I'm struggling - I just don't know whether I should accept the disability. It's so weird how I can't process verbal information as much as visual (notes, etc.). What is so hard is that I must have got a bit better - I've seen improvements - but they disappear if I'm mildly nervous or agitated. It's so stupid (me!). So you say your job was deleted - is this a redundancy? Mine happened in 2017, leaving me contracting and that world is changing now. Maybe I should seek out a statement from a specialist before I apply for another job. If I'd had the questions before they started - maybe that would have helped today. Your answer sounds very positive. I hope you get the next job! Thanks! Fiona
  6. Hi Jenni, I wouldn't go so far as to say I'd lost my eyes, but both eyes were affected - there were blank spots for each eye. The right eye was also affected by the muscle (it was going all over the place!) - leaving the right eye pointing at 42 degrees - looking very cross-eyed! Once I realised I could see, without double-vision, if I shut off an eye, I thought this would solve everything, but the consultant wanted to make sure that I could actually see. It turned out that there were both blank/blind spots for both eyes, and this took a bit of time to return. So my eyesight returned very slowly. At 4 months I'd written off the right eye, and always wore a patch or frosted glass. I also tried a black contact lens (very expensive and stupid - worn once). However prisms *do* make a difference - eventually I tried this out and could use both eyes. They are pretty horrible when wearing them, but there is another answer - the optician can make glasses. My consultant told me not to bother (yes, it's expensive) but I went there when I couldn't get an appointment when my eyes had improved a bit - and my prism was wrong for driving! The prescription specs were AMAZING. It's like getting your life back. I've spent a fortune with my optician - three sets of prism glasses since I had got as far as 10 degrees - but this is well worth the money. I'm due another optometrist appointment next month, and I think she'll sign me off. At 4 months you are still very early, so there may be some change - fingers crossed - hope this is some blood hanging around that will eventually disappear, with positive effects. So terribly annoying that you had to put up with 5 days! Fiona x
  7. Hi all, The last year hasn't been too bad. I can cross vision off the list, leaving me just a few niggling things. One of this is my speech. Again, shouldn't be too bad, but comes out to be an annoyance if I'm nervous and stressed. I can't think of the right words - that would normally come without any problems. Grrr! Anyway, this turns out to be quite upsetting because I need to get a new job (no further contracts). Shouldn't be a problem, really? My brain works, and everything should be fine. But in the interview, I panic and then I can't answer properly - much worse than previously. A dream job unlike normally too. What should I do? Should I see how this pans out? If I don't get the job, forget and move on? Or should I send a follow-up, mention my background as to why some of my answers were stuttery and ? Off now to spend the rest of the day 😭 My husband says I'm meant to be happy that I'm alive, so I know this should be nothing 😳
  8. Hello Jenni, So sorry to hear you are sad. At 4 months, you won't know where you are going to end up... but we can say that 4 months is very early days. I know this is hard as there are no answers when you feel so bad. I had my SAH on 7th February, and I wouldn't have lasted any further if someone hadn't made me go to hospital that day. With the brain bleed, my eyesight was damaged, with still about 42 degrees at 4 months. I took to prove that I could manage driving with only one eye - this happened over time. It's only yesterday that the optician says I can actually drive without prisms (your brain makes up for the squint, it's not quite there yet). You mention flashes - I do still get this. What I hope is that some additional time - give you at least a year - before you worry about the longer term. If blood is left in your brain (this is what happened to me!), it takes a long time for it to eventually disappear. Fiona x
  9. I'm sure something will come back too. At this stage, biscuits and sweets will help us put our strength back on. I'm terrible for *liking* salt!
  10. Sarah, I have only just read your story. So very hard! Fingers crossed for you with the next step xx
  11. Really interesting to read this forum. I've been wondering about my appetite in particular. Today I'm at 11 months after SAH, and I've lost at least 4 stone. Clothes are size 12 instead of 18 - very expensive journey! I'm very happy to lose the weight at last, but couldn't understand why it's happening. I'm relieved to see that this is quite often in this scenario. I wondered if this down to my thoughts, but most people seem to think it's physical. I also wonder about stopping my HRT treatment, that had caused weight on at the time. Now I think my appetite was 're-set' by having had a month unconscious. This seems fine. My husband is a brilliant cook. While I can't be bothered to eat, he decides what I might be able to eat - and this works. Spicy, lemon, vinegar, fresh vegetables etc. are all great. Indian & Vietnamese work well too. Stodgy stuff, no good. Still, got no idea if I'll start putting the weight back on... it can't possibly last!
  12. Thanks to both of you! I had no idea about the Access to work scheme. To be honest, I really think I'll be able to drive. Tomorrow I'm going to a private consultant, and as it turns out, I will see the NHS consultant the following week. A week saved is still a huge amount if it works. My doctor ensured that I'd get an appointment after she heard what had happened. She's been really nice. The downside was that while I had no control over what was happening, this impacted on my work. I couldn't control myself when I didn't have any controls over what was happening with my eyes... and my own person is now impacted in the workplace. I will need to control myself or lose everything. The positive side was that I realised last weekend that I could go for a bike without the patch over my eye! I've now done 4 patch-free bike rides without any problems. Speeding up is too much, need to stay very slow to be within single-vision. It's too soon to attempt in the car, but it's clearly getting better every week. So anyway... will find out what the story is with eyes tomorrow!
  13. Hi Louise, Well, yes this isn't ideal. I was due a check on 2nd May after a month to see if this was any better - and has shown my vision has improved then - and again on 2nd June. Has it been proven for driving? No - but this needs to be checked. Practically, I've experienced better driving by others - set in the passenger seat of many others 😳 - and scared, but not by me! The problem isn't about me, Dumfries and Galloway has zero public transport options. There are 2 trains to Edinburgh which are ignored by local transport. The only way for me to get to work is a 40-mile around trip for somebody else, before breakfast time. This means I have to drag everyone else to help me out. Without an appointment, I need to book travel and accommodation in advance to avoid huge payments. Without a support date, this would help. Nobody can help. I have no option but to try private appointments to see what is going to be one way or the other way. Better than knowing nothing! Current view of 'maybe travel/maybe not' is not sustainable - not in the like of Edinburgh Festival! This week is OK while my sister gives me her own flat - she is away just now, but when she's back, my flat costs £300/week. Driving would save this. Yes, grim!
  14. Amazing stories here! I think my own sight will take a long time to get proper vision back. I'm not too worried about waiting... so long as I can drive.
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