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Skippy

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Everything posted by Skippy

  1. Some of the "older" members on here when the site first started 15 years ago or so contributed to the book and I know what you mean by your comment, but believe me, in a years time re-read it and you'll appreciate it a lot more. When I first joined this site, I couldn't read about others' experiences and, basically, the hell that some people were going through. It depressed and scared me, but I continued reading and, if anything, it made me more determined that I wasn't going to let this dominate my life. It made me more intent on beating it and getting back to the best version of the "old me" that I could. Again, in time, you will appreciate these comments. You will come to realise that you have been lucky with hand that you have been dealt. When I first had my SAH, I got angry when people said I was lucky. I'd raise my arms, gesticulate to my body, point to my head and say "Tell me, how is this 'lucky'??" But you know what, as time went by and I gradually got better, I realised they were right - I was lucky; lucky to come out of this with little or no aftermath other than fatigue and to basically be alive. At this moment in time, your interpretation of luck will be a lot different. Don't beat yourself up about what you can and cannot do right now. It will get better, you will get stronger. There is no certainty that you will be back to full strength and be able to do all the things that you could do before. Baby steps are the key. You wouldn't walk into a gym and choose the heaviest weight to lift - you'd build up your strength and the heavy weight would be your goal. Adapt that approach to your recovery, keep a diary to look back on and monitor your own progress - it really does help you to see how far you've actually come when you feel you've not come far at all. It's a long road to recovery, but you can make as many pit stops as you like - and we'll all be here to change your tyres and help you refuel Take care xxx
  2. God bless our Darling Winnie - still sit and read the Private Messages some days, just to put a smile on face. Keep singing darling Win xx
  3. Hi there Daniel We cannot give medical advice or give answers to "What are Post Stroke Fatigue or the actual Post stroke recovery pains and what could be something else that needs investigating" as we are all different and would all go through this in different ways. The only advice I can give is, speak to your Gp and see if they can refer you to a specialist to discuss - or if you're due a follow up appointment with your Neurologist, ask them At the moment it certainly does sound like you have far too much, far too quickly and yes, you are now paying the price. You need to treat this as if you have broken a limb, because you've actually got an injury to something far more powerful and something that does not ever rest and now it's telling you it's not happy. Read this and it might go a little way to help you, and your family, what you are going through at the moment - its very much an invisible illness but it's very real! https://web.behindthegray.net/articles.html/inspiration/a-letter-from-your-brain-by-stephanie-st-claire-©1996-r167
  4. Ilse, that's great news on all counts - remember to still take it easy when you can though. I am so loving your attitude to life and your recovery - well done you!! xx
  5. Hi Adam, and yes, a very warm welcome to the 'family'. I can't imagine what going through this alone in hospital must have been like for you, or for your family not being able to be there with and for you either. I agree with Sarah regarding the comment about yours "being a good one" - no-one can define a brain bleed as good in any way, shape or form! It might not have been "serious" but a bleed is a bleed and it has a massive impact on the patient and those around them. As for the 6 - 8 week recovery, a slightly unrealistic standard time frame given by medics who have never had the misfortune to suffer one. It took me a year to stop needing to sleep during the day - like Sarah, mine was a ruptured aneurysm. I now know that I am "lucky" to have come through relatively unscathed, but when anyone told me at the time I was lucky, I wanted to take their heads off!! The panic attacks and anxiety can be caused due to PTSD and it's worth getting counselling if you can - I did and it was a tremendous help. I thought I was losing my mind and that mixed with the overwhelming feelings of guilt for what my family had gone through, didn't help. Tiredness and fatigue are part and parcel of recovery and you have to listen to your body - it will tell you when to stop. Plenty of fluids and resting / sleeping when you need to or can are the most important things right now. Try to avoid stress (not easy during recovery, I know) as this will help with any head pain - along with the all important fluids - the brain needs to stay hydrated. I say this to almost every "newbie" to BTG - it can be a long road to recovery, but take as many pit stops as you like a long the way - we are your pit crew and are here to help and listen. The only thing we can't do is give medical advice as none of us are qualified to do so. Look forward to hearing more from you and accompanying you on your journey to recovery. Take care.
  6. Hi Rosie I'm 15 years in this year and every bad headache has me in a panic. My energy levels are nowhere near what they were, but I also put this down to being 15years older. However, even in the first few years after, I tired more easily than I did before and would often need a snooze on the sofa. Trying not to worry is easier said than done, but also helps a lot. Don't compare yourself to to pre-SAH, compare yourself after it and now - only then can you see how far you have truly come xxx
  7. I had the AstraZeneca jab, 1st dose, last Friday and had a bit of arm ache for a couple of days, but nothing else. Have felt completely fine. Like Sallios said though, everyone is different and there have been different side effects for different people.
  8. Fingers crossed for you Tony - no feeling like getting that licence back. Keep us updated x
  9. Ilse, all I can say is "Well done girl" - believe me, that attitude and humour will be a great asset to your recovery. My husband has always said that it was stubbornness and humour that got me through the tough days. Loving you and your outlook already xx
  10. Hi Ilse and welcome. So glad that you've found the site helpful and realise that you aren't alone. Can you tell us a bit more about yourself - age, job etc. Don't worry about your English either - it's probably better than a lot of people's that I know whose first language is English!! You seem to have kept your sense of humour too, believe me this is a huge bonus and get me through a lot of tough days. All I can advise at the moment is to take your time going back to work full time (not sure what you do, hence the request to tell us a bit more about yourself). If you can, I'd take a few of those stashed holidays as soon as you can. You still need to rest and overdoing things too fast may set you back in your recovery. You need to rest and drink lots of water to make sure your brain is hydrated. Listen to your body and stop when it tells you to. Look forward to hearing more from you - you sound like you're going to be fun
  11. Hi Keyo Welcome to the site and to the family. I can completely identify with what you are saying. I hated not being able to do what I wanted to do, when I wanted to do it. However, I soon realised that what I wanted and what my body and brain needed were two very different things. The adjustment is hard to begin with and I also found it very frustrating. My expectations were completely blown out of the water after my SAH. I know it isn't easy but you have to adjust those expectations and do everything within your limits - such as they are right now. A good idea is to keep a diary of what you have been able to do and for how long each day - you'll look back at this in the months to come and realise that you have actually come further along in your recovery than you think you have. I set myself new limits each time the previous limit was met comfortably - I soon learned that if I pushed myself to hard to quickly that I ended up taking steps backwards and the frustration would begin all over again. The hardest part is accepting the "new" you, once you're able to do this the frustration abates and things become more bearable. You're right, you are very early on in your recovery and it took me a good year to stop needing to sleep during the day. Don't beat yourself up about not being able to do all that you could before - just because you can't physically see the injury, it doesn't mean it's not there. If you had broken your leg, you have had it in a cast for 6 weeks or more and then the rehabilitation after that to build it's strength back up. Your brain never stops working, so doesn't get the chance to completely rest. Right now, listen to what your body is telling you, rest/sleep when you can and make sure you drink plenty of water - it helps with brain function and certainly helped keep my headaches at bay - I still drink at least 2litres a day 15 years later. I'm sure that your husband is just as shaken as you are and although you may feel it's putting a strain on your relationship, you need to tell him what you have told us. They can never understand how it feels but it will go some way to help him understand how it has made you feel. Take care my lovely, and please keep us updated xxx
  12. Hi Rory Welcome to BTG and so glad you found us - this place is truly a life saver. As for what your Doc told you about 6 weeks - I wish they'd look at forums like this before they give unrealistic expectations. You'll find a wealth of information and experience here - as well as true understanding of the journey that lays ahead of you. Definitely join in the banter in the Green Room - one of the biggest saviours for me was keeping a sense of humour alongside the determination, and the Green Room is where we "meet" to have a chat and laughs. Look forward to going on this journey with you
  13. Hey there Agree with everything Tina has said - be kind and accepting to yourself as well. Regarding the uncontrollable outbursts - I see you're only 3 years older than me and I'm going through the same thing at the moment. However, I do know what's causing them - the flaming menopause!!! And I do notice that the symptoms are worse the nearer it would be to my monthly cycle. Is that ringing true for you at all? It's still worth talking to your doctor if you can, they may be able to help somehow, but identifying the reasons is just as helpful and may help you and your family understand. At the end of the day, we don't get taught about the mental effects of the menopause and many of us just put up and shut up and get on with it. Definitely be proud of how far you have come and remember, we're all still on this journey and there will be twists, turns and hurdles along the way - but we can and will get through them and over them. Sending you massive hugs and tonnes of understanding xxx
  14. A fantastic legacy in honour of a fantastic man who has left a huge hole in so many lives xxx
  15. Hey there Congratulations on your 1st anni-versary My first was the hardest to deal with and, like you, I probably felt worse that day than I had in a long time. Possibly the anxiety and irrational thought that it was going to happen again on that same day didn't help. I totally get the feeling of wanting the inside of your head massaging and its the perfect way to describe how it feels - I still get that feeling occasionally - especially after a busy day at work. Thanks for popping in and telling us how you're getting on and I hope your recovery continues well xx
  16. Hi there As Super said, we cannot give medical advice and this is something that you should discuss with your surgeon. I have had two operations under general anaesthetic since my bleed and have not suffered any after effects at all.
  17. Sarah, absolutely beautiful and spot on with the singing. Sat here with tears streaming down my face xxx
  18. Hi Sarah So glad that you liked them - we all thought the brightness reflected your mum's warmth and personality. Lots of love and many, many hugs Sami xxx
  19. Oh My Sarah - so very very sad to hear this - in fact, I'm gutted. Your mum never failed to put a smile on my face with her posts, her wit, compassion and her positive attitude - and most definitely her singing. She was a huge part of BTG and she will be greatly missed. As Karen says, she was one heck of a lady. Sending you all so much love and many, many hugs.
  20. I'm OK to continue at the moment Karen - will let you know if anything changes x
  21. Hi Charlie, Yes it may well be because you're on your mobile - its on the top menu bar where its starts "Welcome, Support Information" and so on.
  22. You're welcome Karen - first thing I do when I get home is log on and have a look xx
  23. HI there and welcome to BTG. I' not sure that any of our members have given birth after an AVM but there are a couple who have since their SAH. You say your neurosurgeon is no longer practicing, but surely there will be someone in that department who can look at your records and and your case and advise your Obgyn accordingly. Ask them to write to them as your surgeon is no longer practicing.
  24. Congratulations Colleen So very pleased to hear you're doing so well - it always brings a smile to my face when I read of other's recoveries and their ongoing stories. And I agree, this is a fantastic family to be part of x
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