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Karen

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Everything posted by Karen

  1. My thoughts are also with Neil, his children, family and friends.... I wish them love and strength over the coming months. x
  2. It's with much regret and sadness to announce that Neil's beautiful wife Cassandra sadly passed away on May 6th after an epic battle to overcome her deficits. She passed peacefully and surrounded by love. Cassandra's recovery journey was an extremely difficult one, but one faced and fought with great courage and determination. It truly saddens us when we hear that we've lost a friend from our small community and we just hope that this site was a little comfort to Cassandra in her hours of need. She will forever stay in our hearts at Behind the Gray. Written by Neil for Cassandra's funeral service: Thank you, my darling Cassandra, for: · Your piercing insights and your companionable silences · Your disrupting home truths and your unswerving loyalty · Your sense of fun and your sense of gravitas · Your push for adventure and your acceptance of introversion · Your advocacy of entitlement and your honouring of humility. Thank you, my beautiful Cassandra, for: · Your ever-present luminous beauty · Your welcoming smile · Your authentic style and poise · Your flaming red hair. Thank you, my wise Cassandra, for teaching me: · How to bring up a daughter · How to release my emotions and turn it into support · How to not accept second best and send back meals, push for better accommodation and return stuff that didn’t fit · How to treasure relationships and nurture friendships. Finally thank you, my wife, my friend, my confidante, my guide, my mother of our children and my inspiration for your truly amazing love…support…grace…humour…and honesty. Thank you for being the love of my life. Banksy has observed that you die twice; once, when you stop breathing, and a second time, a bit later on, when somebody says your name for the last time. I’m determined not to let you die a second time, Cassandra – goodbye until next we talk."
  3. With many thanks to all of those members who make a monthly donation to Behind the Gray! x I'm a little bit late with the "thank you's" but it's so much appreciated and it helps us to budget for the normal bits and pieces and the unforseen stuff that arrives at BTG's door .... Thank you so much. xx
  4. I think that you need to raise the question as to whether vaping raises blood pressure? I believe that nicotine does raise blood pressure in whatever shape or form. It's perhaps better for your lungs, but may be not for your BP and it's important to keep blood pressure down after a SAH. With vaping, you're probably still taking as much nicotine, as you did, when you smoked and perhaps even more, as you don't physically put the cigarette out. Personally, I would say, that vaping is perhaps even worse than smoking post SAH, as you don't know how much nicotine you're putting into your blood stream. I'm quite shocked, that your husband's GP has said that it was okay.
  5. I believe that periarthritis is what's commonly known as a frozen shoulder and could possibly be down to age and wear and tear? I've never known a frozen shoulder to be linked to a SAH. I've had two frozen shoulders now, one on my right and the other on my left hand side of shoulder. I believe that the blood that dissapates from the bleed, down the spinal column can affect the nerve endings and the blood can take up to 3 months to clear. If you're worried and can't lift anything with your hand, I would suggest having a chat with your neuro team.
  6. We're looking to raise at least £800+ per year to keep this site running.... Hosting alone and part management with Invision, is now costing us £600 per year, so that doesn't include any extras that we may need to put into place ... such as paying for up to date software upgrades every couple of years and new themes/skins that support the new software. Information technology changes like the wind and in order for this site to work properly and without any glitches, we have to move with it. If we don't, it results in areas of the website becoming "broken" and the website and forums would eventually fall into decay and not usable. Everything, that is carried out on this site is voluntary and carried out to a high standard and would cost us significantly more, if we had to employ people in a professional capacity to do the same. Therefore, we rely on the goodwill of volunteers to keep this website running at the high standard that it is, for the minimum of costs. If anybody would like to give a donation to help keep us running there is a Donate button on the site .... if you would prefer to send a personal cheque, then please contact me via Private Message or the website via email. With many thanks to all who've set up a regular monthly donation with the website and you know who you are! x A regular monthy donation helps the site to budget for the following year/s and to be honest, it's a bit of a relief and less stress for me when working out our finances or if we need to consider fundraising. I'm not good or at all comfortable with asking for money to keep this site funded and it goes against the grain for me, but I can see that it's often down to some individuals who donate the one off larger amount who've floated the site funds to take BTG forward for another year, after I've appealed on the website and without these members, BTG wouldn't be here. So, it's also with many thanks to those of you, who've donated a yearly donation over the years and you also know who you are ...x Thank you all for your kindness and giving support to future survivors.
  7. Belated congratulations Super Mario and wishing you well! xx
  8. Finollie, I don't know of anyone that's had their insurance premium increased because of the SAH. I believe that insurance companies cannot increase your premium, if the DVLA has said and given the okay, that you're fit to drive ... Your insurance company may want to see the copy of the letter from the DVLA, telliing you, that you are fit to drive. It's much better to declare your situation, rather than having an insurance company not paying out, when you need it ...I would always advise for anybody to declare their medical history to their insurance company, irrespecive of having your licence revoked, as they would perhaps refuse to pay out. I never had my driving licence revoked and declared my problems voluntary to both the DVLA and Insurance company. At the time of my SAH, I had a work colleague, who unfortunately had a brain tumour, but gave sage advice. I had a third nerve palsy to my right eye and seizures during my spell in hospital...some of those seizures were the hospitals fault with their lack of due care and attention. A third nerve palsy meant that I had double vision. The DVLA were happy for me to drive, as long as I corrected the double vision with either an eye patch or glasses fitted with a prism, when driving. I believe that if you've been declared fit to drive and it's been confirmed by the DVLA and you have evidence as such, that insurance companies can't discriminate and up your premium.
  9. Hi Joe, I think that it would be worthwhile for you to make an appointment with your GP and get checked out. We often put a lot of our symptoms post SAH down to the bleed and sometimes they're aren't. I used to blame the SAH for everything and would just plod along and struggle. However, I've now got a good GP who gives me blood tests each year to make sure that I'm not deficient in any vitamins/minerals etc. At one point I was seriously low in calcium and vit D and at the point of nearly having to be put onto a drip and hospitalised. I was also low in folic acid/B12. All of these factors contributed to excess fatigue/restless legs/muscles twitches etc. Joe, please make an appointment and ask your GP to rule out any other underlying cause. It could be something that's easily fixed ... don't do what I did and keep struggling ... It will also give you peace of mind. Good luck and wishing you well. x
  10. Yep, it's a 10 minute appointment at the GP's down here too or you have to book a double appointment if you want longer....that's if you can find a double appointment available. x
  11. Hi Dee, it might be worth having some blood tests done? Not sure of your age, but certainly worth to see if you're defiecient in anything .... I was found to be be lacking in Vit D, Calcium, Iron etc ... don't give up! xx
  12. Bill, it's lovely to have you back! You shouldn't feel guilty for the decisions of others ... If somebody is going to commit suicide, they've already made up their own mind and I would doubt that you could have saved them, unless you were there at the actual time. I know of a few people who've done the same and the devastation that it causes. However, you also need to have some self preservation for yourself ... if you're not personally in a good place, then you can't help others, so be kind to yourself first and the rest will follow. Take care Bill. x
  13. Bill, forgive my short term memory, but you came to the Nottingham SAH meet ... at Donna's pub? I know that you left early-ish ... I also think that I can remember how much it took, for you to attend...and I remember your honesty on these forums. Over the years and since you left the forum .... I can see how anxiety and depression affects us post SAH... I've witnessed a lot more honesty and I know that it's hard to say that you're struggling .... I'm still on a learning curve and pretty much have the same fallout as you have. It's a tough ride ... I still don't have the answers to any of it and it's literally just putting one step forward and seeing what tomorrow brings... I'm sure that you bring comfort to your family, as in still having you around .... Life chucks lemons at us ... in many ways... I'm a couple of years further on from you post SAH .... it is tough when you have a massive fallout, physically and mentally and all depending on what part of your brain has been affected and what's going on in your current life...and what you have to manage. It doesn't matter what you've been in control of previously ... it's a sense of bereavement and I feel that too ... I don't feel anger, but perhaps a sense of frustration when I can't juggle all of those balls that are expected of me ... I can't do what I used to do, but I feel that I'm still here .... trying my best to manage it all and also trying to be the best that I can manage, with my family and children and having this extra time with them. Sending hugs and love to you .... you're not alone. xx
  14. Pat, it may be worth your while to discuss with your Doc about having a range a blood tests to rule out any other underlying cause. I know from myself that I used to put everything down to the SAH, however it wasn't. After a range of blood tests, I was found to be Calcium Vit D deficient and also Folate....both can cause problems with fatigue and memory. I was put on to supplements. I also hit pre-menopause, which also caused problems and menopause symptoms can actually mirror the SAH fall out. I would say, that go and see your physician and rule out what you can. Over the latter years of running this site, I know that some people post SAH are now treated with Aspirin....I think that it depends on your own personal medical history and it's something that you need to check out as to the reason why. Good luck. xx
  15. Macca, you're well loved on this site for your kindness and compassion. You have a wonderful way with words and where you convey honesty, empathy and are so helpful in every way! Thank you and congratulations on your 8 years! I'm so glad to have you in my life and BTG's too! Thank you for all of your help and support! xx
  16. Win, I think that I was still doolally when my kids thought that this site was a good idea at 12 months post SAH! Little did I realise, that it would still be running in 2018! Think that I would have run a mile to be honest! It's been run on a wing and a prayer and when I was still recovering myself and still going through all of the issues that I see from members now. It's been a combination of good, sometimes not so good lol and steep learning curves with running the site... but it's been great therapy for me, to see how each of us, have passed on our own experiences, info, support and love for our fellow SAH'ers and their carers and family. That's why I continue with it. xx
  17. Bless you Win! Wow! I was only one year into my recovery when Lauren started this thread....it's brought back memories of how my SAH impacted on the whole family. I'm glad to say that we've all come a long way since 2006! xx
  18. Hi Joe, it's not unusual for smell and taste buds to be altered. I always had a sweet tooth before the SAH and then afterwards? Everything tasted sugary to the max and would make me gag. I couldn't eat chocolate, cake or puds, where as before I would have devoured them. Even minty fresh toothpaste would do the same... I had to find a toothpaste that didn't taste "sweet" or "salty".... it's been trial and error to be honest... I found that my gag reflex went into overdrive, sense of taste and smell also...where I often smelt "bonfire" and stil hate the smell of burnt toast! I'm now quite some years down the line .... but happy to say, that I no longer experience it....(apart from the toothpaste scenario!) Personally, I think that you're still early days ... it's taken me quite some years to re-educate my taste buds or perhaps brain to find new pathways .. However, perhaps not a bad thing not to like MacDonalds or KFC! Find what you like to eat and stick to it for a while .... gradually re-introduce small portions of food that you haven't been able to tolerate....but 19 months is still very early days.... It took me a lot longer. x
  19. Oh wow! That's really good news Tara! xx
  20. Hi Tara, No I've haven't personally experienced an infection post op. I'm presuming that the medics are going to remove part of your Mum's skull to relieve the swelling in her brain, which I'm also presuming caused the seizure yesterday and hence the CT scan. If you think of it logically, when the brain swells, unlike other parts of the body, that swelling has no where to go because it's surrounded by the hard bone of the skull and hence the pressure builds up, as it can't escape elsewhere. I know of a few people that have had to have a craniectomy to reduce pressure and also quite a few who've had a craniotomy to access their aneurysm for clipping surgery. I believe that once all's okay and things have settled down that the piece of skull taken away can be kept to repair the skull or a metal plate put back into the skull at a later date when the patient is stable. This is all stuff that you need to ask the Neurosurgeon. Yes, it does sounds pretty scary, but the main thing for your Mum is to get relief from the brain swelling which is causing her the problem right at this minute. Tara, you can only take it one day at a time and tackle what needs doing for your Mum ... it's a huge amount for relatives to take in and I feel for you all, as it's quite a shock to hear this sort of news and I know the procedure sounds pretty barbaric to anybody that hasn't heard of it, but it's the way to go to try to relieve the pressure from your Mum's brain. Sending love and hugs to you all...xx
  21. Anxiety and depression can accompany a SAH and is very common. Try to find out what part of your sister's brain suffered the damage? It does make a difference to understanding how that person is feeling ... When I first came out of hospital my only venture was being taken out in the car for a ride in the countryside .... not stopping off anywhere, but it really helped. The weather has been exceptionally hot, so your sister needs to make sure that she's hydrated. I'm quite some years down the line now and even I've found the last month or so, quite difficult to deal with. xx
  22. Mandy, it's not an easy one to answer. I had the bleed on the right hand side of my brain...Which affected the left side of my body and often, my right hand side would be more dominant and it would pull me over, when walking or doing anything else. The bleed also caused me balance issues ... I've had to work on my left hand side a lot! .... At first that involved a walking stick to help my balance and also to regain confidence, as I had sight issues which involved depth perception too. I've also had problems getting in and out of a car ... it also depends on what car it is and I still loathe getting into the back of a two seater! If you have balance issues, it may be worth asking your GP for a referral to the hospital for Physio or for a balance check. I've not personally heard of anyone suffering a physical problem with the the bruising post coiling or even with a check up via the same procedure. The bruising isn't nice, but I've not heard of a long term problem. You're very early days post SAH... keep exercising that leg, whilst doing it in a safe place.xx
  23. Well done Clare and hope that you manage to get out for a meal later and celebrate life! ?? xx
  24. Good luck for Thursday Joan! I'm still being monitored for my coiled aneurysm (it wasn't fully occluded) and I perhaps know that I will be in the same position as you at some point. I also have another artery that may or may not turn into an aneurysm needing treatment. I would much rather have treatment before a bleed, rather than after ....as it's the bleed that causes the damage. I wish you luck my lovely ... I know that it's scary .... I also hope that you have good family about you, who will look after you post op. My late mum in law had an aneurysm coiled (without the bleed) ... she was pretty much okay after the op, apart from the anaesthetic, which always takes a few days to get out of the system. Take care lovely and when you're feeling up to it, let us know how you're doing. Huge hugs and much love. xx
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