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  1. Today
  2. Swimming is a great way to help strengthen your core. In my early day I spent a lot of time in water. Why? It takes all of your weight off of your body, allowing you to have some pain free moments. I use a pool that is about 35m long, I pretend to run, literally. So instead of swimming you're in the upright position, it's a little harder to do but boy it worked for me. More benefits are that you can't fall over in the water so to speak. Use a flotation aid to give you some support too. Start slowly then build up doing a whole width at first then a length. If you find it helps, why not join the aqua-exercice group? It's from there you can join the gym again super slow starts.. If you want to know what happened with you on your night ask for a copy of your medical records. You'll get them and can read everything from them as well as keeping you informed. Mike
  3. Hello and thanks for your comments. Relentless pain is so debilitating for your hubby and so hard for you as you feel helpless to offer any relief. As Jess comments, definitely continue to check with your medics. Also, as it seems to be worse during the night, has he tried sleeping in a more upright position. Elevating him with these longer `U` shaped pillows is worth considering. Subs
  4. Speak to the Drs as mine prescribe co-codomol and I still have headaches 17 years later but they have got better xxx
  5. Yesterday
  6. Thank you. It's such a rollercoaster, the aftermath of SAH. My husband has had a few good days, relatively low pain. But nights are dreadful for him. He gets restless legs, and head pain seems to start around 2-3 am every morning. Yesterday was really bad, the worst he's had since he left hospital. It shakes both of us up when it's that bad. Paracetamol does nothing to reduce the pain. Can any of you comment on whether you found anything that worked to reduce the pain? There doesn't seem to be any predicting it. He drinks lots of water, he always has, and even more so now. He probably drinks around 1.5-2 litres overnight. He has also found that when the pain gets bad at night he has to get up and walk around, as being upright seems to reduce the pain. From reading the forum posts it seems that ongoing head pain is a big feature of recovering from SAH, and as many write, everyone is different on how long it persists and how bad it continues to be. Thank you for your replies. It is so good to talk with others who understand the journey. x V
  7. Last week
  8. 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.
  9. Thanks everyone! Nice comment from weedrea too! Actually, I've not been good this week. The NHS refused to give me an appointment for the DVLA - supposed to be 2nd May - but impossible to get the appointment (due to a vacancy). I had started driving into June as per DVLA form, but have now been prevented by the consultant - and he can't approve or deny anything! No appointments. I'm completely gutted, leaving me in a melt-down, impacted by TPX cancelling my trains at the same time, so ended up in tears for ages Wed - Fri. Today I ended up with a migraine at work. I presume this is unrelated to SAH, maybe the stress is getting too much. Still, next week... our local MSP is on the case with NHS not doing anything. Might help, but I've decided to book a session with a private doctor - need to get past any waiting towards my driving. Right... will look up the eyesight section now!
  10. Some great comments posted already, time, support therapy and Physio will all help you in the long run. Just ask away if you have any questions as we are open all hours. Taking your time restarting your life again is a must. Too much too soon and it may slow your recovery a little. Theres a lot of stories here on BTG, some will be of use, some may be funny, most are very informative and you can learn how we recovered and helped ourselves with help from other posters to get as far as we have. I wish you both the best of luck in starting your journey please return and let us help you help us? Regards Michael
  11. People do look at me and think I am fine and some days I am but then I just need to sleep so be patient with hubby and perhaps to get some normality back when he gets better you could go for a coffee together when he is up to it. When you have things sorted perhaps, as early days yet for Hubs ..My hubby got me a teacher beaker and went up to a small carboard cup. Wishing you both Best of luck and if you need to give vent this is a good place to come. Water is a must for him so get him to drink plenty XX Keep well V xxx
  12. Thank you all for your kind words of encouragement. I don't think I know how I feel yet. It's been 4 weeks tonight since our lives were turned upside down. Coming back to our home town has been a relief and very hard all at the same time. When we were in Neuro ICU, everyone there understood exactly what was happening. I didn't have to explain myself, and there was constant support. Now, I'm back to going to the shops, where everyone is going about their business, and I feel like an alien. If people ask me how I am I don't know how to answer, so I just say 'I'm ok thanks'. Our friends and family, and my husband's colleagues have continued to check in, to ask how we are. My husband is improving each day, but I know he will have good and bad days, and eventually people may stop checking in with us, get sick of the same answer. The crisis has passed, now it's back to 'normal', only there is no normal, everything has changed, and we can only go forward not back. I have worked for years supporting carers of children and adults with a disability, I've always thought I was compassionate and had insight to their experience, I realise now that one can't have true insight until one has lived that experience. Anyway, thank you so much for listening, and for caring. Your stories of your own experiences really have helped so very much, I'm sure you understand what it is like to converse with others who understand. V
  13. Hello, so glad you found us, My goodness you and your hubby sure had a difficult time, so sorry to read of all that happened. Sounds as if you had a great team getting him to where he needed to be. Happy he is finally home and has all his cognition, memory and and speech in tact. As you said it is early days for him but he sure sounds like he is doing well for all he went through. How are you holding up through all this, it is so traumatic for family. I was the one who had the SAH, but I know my husband was floored and probably in shock for a while. It took his feet out from under him. Thank goodness I have done well, am now 2 years out. It is an event that takes time to recover from and I still feel it is very close not two years ago. I want to let you know there are so many wonderful people here for support, I feel like I fell into their arms 2 years ago. I have much support and understanding here...My best to you and your husband as he continues his recovery. jean
  14. Hello, and also a warm welcome to BTG Great to hear that you are already finding support from reading the various threads by our members. So glad that your hubby is now home. I am sure that your own profession will be of great benefit as you help him in his recovery. It is very early in his journey and the very nature of SAH means that only over these next few days and months will you both begin to discover the damage caused to his brain by the bleed, as the after effects begin to become apparent.. Prepare yourself for the highs and lows along the way. Please ensure that you take care of yourself too. It can be easy to overlook that your own health is beginning to suffer in your attempts to give dedicated care to your husband. Take time out and talk often to family and friends about progress. Eat and rest well. I trust that your own employers are being sympathetic in these early days and giving you the time you need to rearrange your lives. Well done for ensuring that he received the medical support he needed when you found out the decision had been made to cancel his trip to Sydney. Your desire to give hubby whatever it takes in terms of support will not go un-noticed and he will thank you in his own time. Take care and thanks for sharing. Subs
  15. Without Loved ones we would be lost V Mama xx I had ventriculitis hydrocephalus also and remember nothing. Also had a lot of germs attacking me. Body sent me into cuckooland mode. Trouble with catheter also dreamt a man was chasing me with a big pipe in his hand, I put it down to not being emptied enough hence I also got Sepsis due to back flow. But I was not with it for a long while and once I had shunt put in I woke up. But I know it must be horrid for those who are waiting for us to improve. This I have since looked at when I awoke.. Cannot fault surgeon but Hubs and Daughter were brilliant. Sisters sang to me. When OT's tried to make me do therapy while brain was not with it, Daughter said I called them witches ha !! None I remember ??? Daughter said when I started to eat again while in Hospital she told me I thought we had gone out for lunch to a cafe and I said my treat Sa lol. Anyway good luck with hubs and remember he is a Survivor xxx Keep him happy and keep him away from stress while healing xxx After I woke up. Approx 6 months later hubby and I went back to normal ie cross words. Well he'd been good to me for a whole year and a bit. Never give up and get songs at ready and bring a smile to his face xxxx You also will need rest xxxx We are a handful xxx
  16. I am very grateful to have found this forum. The stories that so many survivors and carers have shared has educated me so much. I have worked with people with disability for 25 years, I had never heard of a sub arachnoid hemorrhage. My husband had a non aneurism sub arachnoid bleed on 20th May 2019. He knew immediately he needed emergency medical help. We live in western New South Wales, Australia, in a small country town. So many stars aligned that night: the one local ambulance was available and came immediately; the local GP at the hospital suspected the diagnosis quickly and hubby was transferred by ambulance to a bigger regional hospital 90 minutes away for a CT scan (no CT available locally after hours); the bleed was located on the CT and the diagnosis given but there was no MRI machine or specialist neurology care so plans were made to transfer him by the Royal Flying Doctors service to the Neurology ICU at Royal Prince Alfred Hospital in Sydney (600km away); I flew ahead to meet him there only to arrive in Sydney and receive a message from my husband that the doctor on day shift had cancelled the transfer and didn't see why my husband should require specialist Neurology ICU!!! The doctor didn't bother to call me himself. There ensued a very frantic (and tearful) 4 hours of phone calls to advocate to overturn the doctor's decision. I won, and my husband arrived within hours. He spent 16 days in Neurology ICU. Words cannot do justice to the surgeons and nurses who cared for him. Hubby had angiogram with CT twice (he reports the second was excruciatingly painful and traumatic), developed hydrocephalus day 3 and had MRI and emergency surgery to drain fluid (no permanent shunt though). He had Nomidipene for 23 days, Endone and paracetamol for pain, sodium, magnesium and potassium intravenous fluids, had a catheter for 24 days ..,... I can't remember everything now. Poor darling developed major complications with enlarged prostate and endured 2 attempts to remove and reinsert catheter (not related to NASAH, but poor timing!!). He spent 3 days on the ward and was flown back to our local hospital before coming home, then being readmitted because of fever and infection so had IV antibiotics. He's been home 5 days now. I know it is very early days for him, for us. So far he has retained full strength, speech, cognition and memory ( other than when hydrocephalus set in). He has good days that are relatively low pain, and days of high pain where he cant move or function. I am amazed and astonished at his strength, patience, and non complaining acceptance. We are a very close and loving couple, we will tackle what comes together. But oh my god, the suffering and cruelty of SAH is something unbelievable. Thanks for reading.
  17. Tina

    Life's Shadow

    Beautifully written Chris xx
  18. Welcome to your new group of friends. We all know what you feel, we have been there too. Just remember not to over do things, or do too much too soon. Things will seem very slow, recovery is different for each of us, some parts of each of our own stories may answer some of the questions that you might have. Theres a future for you to discover, take small steps, pause reflect, look forward and set small goals and continue your journey as it unfolds before you. Just pop in to the forums and find us, talk to us, share with us. Together we all learn... Michael
  19. 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
  20. Hi …. If you utilise the site `search` function at the top of the Homepage you will find the information available on sight issues post SAH. https://web.behindthegray.net/search/?q=eyesight Subs
  21. Thanks for all the messages! I must look further into the forums about eye issues with others too.
  22. I'm sorry I missed your 5th anniversary Michelle, so it's belated congratulations for reaching another milestone. I'm glad you have come out the other side from having some mental health issues with such determination to move forward which is not always easy, I know. Your contributing posts on here are always warm, sincere and written from the heart. You will have helped many fellow sahers during the past 5 years whilst overcoming the struggles in your own recovery which is admirable. It's lovely that you and Jan have met through BTG and have developed a close friendship - long may it continue. Take care and keep strong, Love, Sarah
  23. Michelle, many congratulations on reaching this milestone! Here's to the next five!👌
  24. Congratulations on 5 years! Its lovely to read you have made such strong friendships.
  25. Ami, So glad that your boss has been understanding - it makes life just that little bit easier for you as the stress about it all has now gone a little bit. Don't worry about your colleagues - it can be very hard for people to understand, so don't feel scared of explaining it to them. It's like your brain has had the equivalent of a heat attack and no-one would expect you to work full on after one of those. Take care and remember - you are the most important person to you, so look after you xx
  26. Congratulations on your 4th Anni-versary, As Sami said, don't beat yourself up about the way you have been feeling, I think most of us here can empathize with you where our feelings are concerned. I think once you have found your new home and you get settled, you will start to gain a bit more confidence, don't give up on it, you still have it, just needs a little help to show it's self again. As for you & John walking this path alone ( I know what you are talking about there ) just wanted to say, you will never be alone, you have all of us here at BTG, we are with you every step of your new journey as it all unfolds, I wish you so much happiness with that new journey. As for family support, I can certainly relate to that, my sister's are exactly like yours, they don't see it, they don't understand it, so they feel that " you are better " if only that were true. Jan, there is no need to thank me, we have helped each other, it has been lovely getting to know both you and John over the last couple of years, you both have a very special place in my heart and always will, yes I will always be here for you no matter what, as I know you will always be there for me, love you lots. So here we are looking forward to your next 12 month's, new home, new adventures and definitely a new journey, I wish you well as you set out on this new life for both you and John. Sending you lots of love my very special friend. Love Michelle xx
  27. Hi there Warm welcome to the site glad that you found us. Yes keep hydrated, take things easy slow and easy the way to go, and listen to your body when it craves rest don't ignore it... Hope the site helps you.
  28. Earlier
  29. Hi all Thanks a lot for all the kind words. Sorry for the delay in reply. After the meeting and another small get together (in which I could not stay because of the loud sound), I was totally knocked off and needed a long time to recover. However I am glad to share my meeting went on well. Boss was very very understanding and accommodating. He is ok with my current schedule and infact offered more liberty in timings. Colleagues still had some concerns but they also seem to be settling down now. Feeling better for the last three days now. Hope the good days last a little longer. Thanks again for the support in difficult times. There was no way I could have shared all these things with anyone else other than this forum.
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