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Everything posted by weedrea

  1. ...I prefer to call mine Priti Patel - small and malevolent. But let's not get political here! The only thing I will say is having been brought up in Northern Ireland. the "Ulster-isation" of politics in Scotland and the UK more generally is so very depressing. Everything is becoming so polarised, it's them vs us. It makes me so sad. It wasn't until I left NI when I was 18 that I realised the psychological impact of living somewhere constantly on edge. Anyway, back to the point in question. I am quite like you in that I want to know the "why" for everything. I have arthritis in my wrists which I've had since I was a child. About 9 years ago I quit all my medication cold turkey - something I would not recommend to anyone. I was young and foolish! Anyway, I spent the next few years reading everything I could, trying to change my diet, lifestyle etc to "help" my arthritis. Whilst it hasn't "fixed" anything, I have got to the stage of not needing medication and have slowed down the degeneration of my wrists. I know many people would say I'm still being foolish by not taking the meds but I want to understand why it's happening and not just take medication to reduce rather than heal the problem. So when I had my SAH 5 years ago I approached my "research" with similar gusto. I'll say one thing, it is a rabbit hole. And 5 years on I have no real answers. Do I have any of the risk factors for a brain bleed? No Did I have high blood pressure? No - in fact I had low blood pressure! Family history? No Was I exercising too hard? Doubt it Have I always had brain aneurysms? Who knows! Did my low-protein diet in the years before my bleed have an impact? I feel yes it must have. It surely can't be good for vein health to not be eating good quality protein. Did my long-term inflammation from arthritis have an impact? This is one that I can say maybe. Inflammation can damage blood vessels so it'd be logical to think it could have an impact. https://nnjournal.net/article/view/220 And so did my "cold turkey" on the meds make a difference given I wasn't taking anti-inflammatory medication? Possible. I'd always viewed not taking painkillers as good given they can reduce blood clotting. But then I read this and again my answer is, who knows! https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4458147/ My aneurysms haven't grown or changed since my bleed. Has eating meat helped? Probably yes. Has fasting helped? Probably yes https://www.healthline.com/health-news/fasting-can-help-ease-inflammation-in-the-body and https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3695639/ So who knows anything! There's so much uncertainty about how or why brain bleeds happen and that just then that makes it feel like facts and stats are limited. I've resolved to view my bleed as a freak incident, one that will hopefully not happen again. All I can do is be aware of the risk factors and do my best to reduce them. My brother is a doctor and his advice to me was "try not to bang your head"....seriously?! 7 years of study for that wisdom!
  2. Sarah you've really cheered me up this Thursday evening. So happy you've got such a clear and positive letter from the doctor. Brilliant news. Now time to let all that stress melt away and enjoy the weekend.
  3. Money is overrated (unless you've got none!) Congratulations on the anniversary!
  4. Agree with everything Karen says. It is common to feel like this. The first one after my bleed was playing the local radio station so you could hear it during the scan. That was great, but the show was people phoning in to tell funny stories so it was very difficult to stay still and not laugh I find that closing my eyes from the second you lie down until it's all over is good as well. Be kind to yourself. Remember everything you're feeling is absolutely normal.
  5. I feel there is something about people not wanting to see the fragility of life and the realisation that we're not really in control sometimes with what happens with our bodies. I remember a colleague saying to me "but you're fine now" and I was so annoyed I couldn't put together a coherent sentence to answer them. Yes, I am fortunate that I don't have any noticeable physical issues but that doesn't mean I'm fine emotionally or mentally. Some people's reaction seems to be that it's easier to just pretend nothing ever happened.
  6. Very sound advice. I think it's a very good point to stress that it doesn't matter how small the bleed is, there is always some residual impact - whether it's physical, emotional or both. I'd love to say everything was back to where I was before my bleed but, amongst other things, my perspective on life has changed and for me I've balanced how I live and manage stress etc. (i.e. no more 30+ flights a year!). PS Pat - I've maybe said this before but I grew up desperate to go to BC. My gran's brother emigrated out there and we got sent "Beautiful British Columbia" magazine every quarter. It's the place I've wanted to visit most! Totally inspired me. I think I still have some distant family in BC.
  7. This sounds quite like me other than mine was caused by an aneurysm that was coiled. But I too didn't lose consciousness and it was a fairly small bleed which had me in hospital for about 10 days. Best advice - take it easy on yourself. Think of this as like having a broken leg, healing will take a while - any blood on the brain causes some level of damage. In my case, I'm 5 1/2 years post bleed but fairly close to where I was before it. Though stress and tiredness impact me much quicker than they used to. I'm back working full time ( I know I've been very lucky!). I also have the benefit of working with a team who were with me through the bleed so have some level of understanding of the recovery process. For me I had 3 months off completely then 1 month back 3 days a week and a further month back 4 days a week. By then I'd so much leave to take that I had another couple of months with one day off a week. I'm sure others will say more but the two things I've repeated many times: Firstly, drink lots of water and secondly have a half-hour lie down every evening (not necessarily to sleep but more to turn off the outside noises etc and give your brain a rest). I did this every day for at least a year and when I have stressful days, I still do this. In answer to your question, yes it took me a couple of months to get over the noise sensitivity and around 6 months before the daily headaches were gone. Remember you're brain is recovering from an injury so doing "normal" stuff is like it trying to do it but with less than 100% capacity - your brain gets tired quicker....and when it does it can overwhelm you very quickly (my hubby says I turn into a toddler having a tantrum and I get sent to bed!). Manage your stress and manage your tiredness, but also don't expect that this will be suddenly over in days (this is like a broken leg, not a sprained ankle). Whether you get back to 100% or adapt to something different, it's a journey. But please don't be hard on yourself, continue to come and talk with us! Always remember, you may not have outward scars to prove it, but this is a major event that you've been through.
  8. Not sure if this is the right place to post this but I've been thinking about how different we can react to similar events/life challenges/lockdown. I came across this interview with Amy Callaghan, the MP who had an SAH earlier this year. It's interesting and honest perspective on dealing with serious illnesses (she's also had cancer twice). https://www.holyrood.com/inside-politics/view,battling-through-exclusive-interview-with-amy-callaghan It reminded me of a song written by Julie Matthews called "The sum of what I am". It was written for a Radio 2 program which was interviewing a number of people who had HIV/Aids. I think I heard this just after my mum first became ill and it really struck a chord with me. We've all been through a major life event, but that isn't just who we are. We're much more than that.
  9. Agree with what Karen says. I'd just add that the first year after my bleed I went for a lie down/snooze every day from 6pm to 7pm. Definitely the quiet and dark is good for resetting things.
  10. Well a bit of a fright this morning from Google Photos! Here's your photo memory of something that happened 5 years ago today....and it's a picture of me in my hospital bed! Thanks for all the support! Andrea x
  11. The song thrush was out last night in the garden....made me think of Win. x
  12. Matt I'm quite like you as well...two aneurysm, one of which bled. Though if we're taking count, I only needed 1 coil as my aneurysm was so small! I think they needed to get the microscope out to see it. As others have said, take it easy on yourself and remember that you have had brain surgery, and that is definitely not nothing. I took a little longer to get back to work than you and by then had so many holidays that I took every Wednesday off for about 3 or 4 months. I still take a couple of Fridays/half days off when things get too much. Evening snoozes, even for 30 mins, are a must if you're feeling like meeting are too much. I am also very lucky with my employer in that I work at home full time but I definitely find it very tiring still (4.5 years after my bleed) when I have to go into the office for all-day meetings. I also think after a traumatic event like this, you can get 'survivors guilt' especially when you feel that others are suffering much worse. But never forget, you're a brain surgery survivor.
  13. Daff Congratulations on 8 years. When I was in hospital my hubby came across your blog and I want to thank you for writing it. During that scary time in hospital, your blog was a real comfort. Not that you glossed over the difficult moments or made light of it all but because of your honesty at the struggle and adaption you were going through. Like many of us I had no clue how seriously ill I was, what the challenges would be or indeed what recovery (I think you say it better as "adaption") could look like. But your blog helped me know that I wasn't alone, so thanks for that. Andrea x
  14. Welcome to the forum. I'm not sure I can give you any advice here but I know others who have been in similar situations will. Just wanted to say 'hi' and thinking of you as you go through this difficult time. A x
  15. I agree with Skippy....a 'small leak' is still a bleed and any blood on the brain will cause damage, whether that's temporary or not will remain to be seen. I had a coil fitted after a small bleed. I didn't pass out at the time or have any other side effects during recovery but for me it took 3 months before I went back to work and then it was one month for 3 days, then another couple of months for 4 days. Headache was there constantly for about 6 months but have improved greatly since. Tiredness is another side effect to be aware of. I went at least a year with a 30-60 mins nap every day - definitely good to reset. I'm 4 1/2 years post op now and the only lingering change is my inability to cope with a lack of sleep...no more early morning travel with work for me. I'm also not great in long meetings or stressful situations but it's something that can be managed. I wish you well in your recovery.
  16. I had my SAH in 2015. I had an MRI after 6 months, 12 months, 2 years and 4 years. Doctor then told me he never wants to see me again So I think it varies, whether they're happy that things are stable, or low risk etc. I'm a little nervous that the doc doesn't want to see me again but I'm trying to take it as a positive sign! I'd think if they don't want to see you for another 4 years that they're happy with what they've seen over in your last scan. All the best Andrea
  17. I remember as a kid going to the optician and the whole time he called me Amanda rather than Andrea. It definitely didn't fill me with much confidence in his eyesight!!
  18. I was a similar age to you when I had my bleed (I was 39). My advice would be: - Drink lots and lots of water - Have a lie down or nap, even for just 1/2 hr, every evening - does wonders to just give your brain a little rest for a while. I had a whole year of this and still do it when stress levels are high - Take it easy with work. I had 3 months off and then 3 months building back up to full time. I'd recommend either Fridays off to give you a long weekend or Wednesdays. Wednesdays I found particularly helpful so that I was only working 2 days at a time - Build up your own confidence regarding exercise. Whilst I can't prove it, I'm sure strenuous in the days leading up to my bleed had some effect. But that's my own thoughts. I built up slowly, maybe only managing 5 mins walking at first (I was afraid to go out of sight of the house). I have found swimming to be an excellent, low impact exercise. I've recently gone on my bike for the first time, managing ~18 miles. Wonderful to have that freedom again (with a helmet of course!!). I wish you all the best in your recovery. Andrea
  19. Very wise to cross the T's etc. I had a period of continual headaches and in the end found out it was caused by sucralose. I'd started taking some supplements to try and help with my arthritis and ended up giving me a constant headache! Fingers crossed that you find some answers.
  20. Thanks all for your kind words. I used to have to fly to Glasgow or Inverness 3 or 4 times a month with work before my bleed. Now I'm not quite so relaxed about traveling but still have to do it at least one a month. So as well as my scan, I get to distract myself with work meetings... Lucky me! I'll also hopefully get to finish my book on Edwyn Collins' recovery. It's been a tough, but inspiring read. I watched a programme last week on The Proclaimers (if you like them I'd thoroughly recommend it on iPlayer). Edwyn had been the producer on one of their albums. It was just so lovely to see him on the screen remembering, talking and laughing.
  21. 4 years today I had my bleed. Where does the time go? Been feeling pensive and a little anxious about it. I'm off to Glasgow on Monday for my 4 year check up scan. The last one I had was 2 years ago so having another scan suddenly brings the memories all back. Also, when I had my 1 year scan, I went with my mum. At that stage she had already had terminal cancer for 18 months. Those few days in Glasgow were probably the last quality time I spent with her as she was just overwhelmed by cancer during her last 6 months. So many mixed emotions about it all. Thanks guys for all the support. Andrea
  22. Welcome to the group. I live in the Western Isles and I too got the air ambulance to the central belt....though I got taken to Glasgow, so I presume you're from the east coast of Scotland. What would we do without the air ambulance? Live savers indeed. I'm just coming up on 4 years since my bleed and coiling. It definitely takes a while to get back on an even keel. As for stressing about the coil - that is normal. I had check-up scans after 6 months, 12 months, 24 months and (after none last year) I'm off in the next week for my 4-year scan. They'll keep monitoring it until they're sure everything is stable. Depending on where you are, they will likely do your scans down in Edinburgh. I had my first scan in Inverness (no MRI in Stornoway so this is closest) but I'll be honest, it was a pain to organise as it was different health boards so now I just go down to Glasgow for my check-ups. I had 3 months off work, and a further 3 months working up to full time. I am fortunate to work from home and still now 4 years later I find it hard when I have to travel for work and spend time in the office. Take it easy and sleep, sleep sleep! I think it was best part of a year before I could cope without a half-hour evening snooze. I still do it when work is stressful. Glad you've found this group. It's very encouraging speaking with others who understand what you're going through. Andrea
  23. Welcome! A Doonhamer are you? My hubby is from Dumfries and we used to live there a while back. Beautiful part of the country to live in. Andrea x
  24. For me it is like a brain fog when I can't think on my feet, take extra time to answer questions when someone's talking to me. Almost like the words are hidden. The other sign for me is grumpiness! When I loose my cool because I can't think straight, I get sent to my bed like a kid!! Half-hour eyes shut is usually enough to reset.
  25. I'm 3 1/2 years past my SAH. I went back to work 3 months after it - first month back 3 days a week, second month 4 days then full time. By the time I went back full time I had lots of annual leave allowance so I ended up taking most Friday's off for another few months. Overall I've not had any real negative impact from my SAH. I'm back working full time but I have the benefit of managing my time to fit with my energy levels. I work at home and I've never been a 9-5 worker. I have the benefit of being in control of my own work so it's no issue if I work at 9pm or 10pm if that's when I'm feeling best - as long as the work gets done on time (but no-one ever arranges for 9am meetings for me!). I have been very fortunate in my recovery but going back to work full time was still a struggle. I spent the first 8 or 9 months having a 30min nap every evening when work was finished for the day. I could still do with that sometimes! When I didn't have my nap I was the grumpiest person in the world! I still have lots of 'times out' during the day - walking the dog (well not now since my old boy left me *still sad*), making a cup of tea...whatever, to break up the day and get away from the computer screen. In my previous life I adored spreadsheets (sad, I know!!) but now an hour and it makes me feel ill and a little crazy! So I'd just suggest you be aware of your own stress levels and tiredness and take breaks as you need them. Worst thing is to try and struggle on. As a starter I'd say if you have annual leave to use up then take Wed's off or Friday's or something to break up your week. It definitely helps if that's an option for you, even in the short term. Happy to chat more or offer more advice if I can... Andrea
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