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Found 9 results

  1. Good morning, I hope everyone is feeling well, its sunny outside in the UK for a change, we are all happy to be alive... Genuine question in need of explanation please.. What are Post Stroke Fatigue or the actual Post stroke recovery pains and what could be something else that needs investigating I suffered my SAH at the end of January, I was told I would suffer lower back pain as the blood dispersed but never did... I am vastly weaker physically than I was for sure and have the energy levels of a 300 year old which has presented in my evenings being uncomfortable rather than painful after a day of doing very little.. Then a month ago I had to move house and the old me kicked in and my fiancé and I did the move ourselves, packing renting and driving vans unpacking the whole thing and although I was tired we got through it.. Then trying to settle I decided 3 weeks ago to buy a greenhouse on ebay, it was an incredible deal but 2 hour drive to dismantle it so I booked a van and off we went at 7am A strenuous 14 hour day plus 4 hours driving and a greenhouse in peices is in our new garden Since then, I feel like I went 12 rounds with Mike Tyson... I hurt everywhere from my toes to my nose.. aches, pains sore and it will not go away... it has lessened a bit in 3 weeks but I am still feeling quite broken and don't know what to do with myself... I had always been very physically fit and strong with incredible recovery powers... Is this Post stroke fatigue..?? Did I just break all the rules and advice I am reading on this forum of being good to myself... Is this the way my body will behave if I push too hard.. for the first time in my life I feel my age and its really depressing me My doctor admitted she knows very little about SAH and the recovery process, she has called me in for blood tests on Monday so see if I have infections or viral markers.. I have increased my fluid intake and have done next to nothing in 3 weeks, the greenhouse is still in pieces in the garden like it's mocking me for being weak Should every part of me hurt after 3 weeks.. apart from not having major headaches I feel worse than when I left hospital 3 months ago... Any advice or thoughts on what I have done to myself or what help I should be seeking please let me know... I am desperate to do things without being busy or being able to self medicate with "herb" I am driving myself and everyone around me nuts.. The one positive if it is a positive is I stopped smoking herb after 30 years of heavy use in a heartbeat... the day my SAH happened was it... so I do wonder if I am suffering other kinds of withdrawal... All ideas and opinions welcome, as said at the beginning the Sun has come out and I want to go out and play, not just sit around like a lump complaining of my aches and pains, that is not who I was or who I want to be... If its sunny where you are I hope you can enjoy your day and the weekend coming.. D x
  2. First let me apologise for this post. It isn’t a happy post, but I need somewhere to rant where people will understand. It’s been 4 1/2 years since my haemorrhage was coiled and I have been through various CBT and OT treatments, as well as a stint on the anti-depressant Sertraline (because apparently my fatigue was due to depression!!). I’m angry (and frustrated) because despite explaining to my family, employers and Doctors, they don’t truly understand the fatigue. They try and are understanding to some extent. I’m sure we all know what the fatigue is like when it hits and I hate it. It makes me feel inadequate, lazy and useless. I think I am still trying to be the person I was before the haemorrhage and it’s starting to really hit that I’m not and probably won’t ever be. I’m currently giving work most of my energy (in order to pay the bills) but it’s leaving me with very little for my home and personal life. It’s like the haemorrhage has robbed me of this. Perhaps my current feelings are part of the acceptance process. I hope so. All that said, I know things could have been a lot worse for me, so I do count myself lucky. Also, having read through many posts here, there are some very brave people and I’m hoping I can draw some strength and inspiration from that. Thank you for giving me the space to get some of these feelings out.
  3. Riti

    Riti

    Hello All, I found this forum awhile ago, but wasn’t ready to share my experience or read too much of others’ yet. I am today. About 2 yrs ago I suffered a ruptured SAH. At 24 yrs old, this was undoubtedly the most traumatic experience in my life, still holds that title, and most likely will for the rest of my life. It occurred during the first week of my new job, my first stepping stone into the corporate world. I woke up one night to a ridiculous headache and vomiting water. I naively thought I had some sort of flu, but also knew something was definitely wrong. Luckily, with heavy emphasis on luckily, my mother took me immediately to the ER. The Dr. who thought it could just be a migraine, fortunately decided to get me a scan just in case. I was in the “very healthy” category up until this happened with none of the risk factors, and genetic testing coming up short in answers and long in questions. I also have 1 small unruptured aneurysm that is “not in a great location”, which is getting looked at via angiogram tomorrow. My current symptoms include: Difficulty accepting new reality Feeling 95 in a 25 year old body Hypochondriac tendencies Challenges relating to peers, and non-peers Over-stimulation (ie: at a symphony, department stores, etc) Migraines, fatigue, trigeminal neuralgia Nonetheless, I do feel incredibly blessed to be here, and to now be in the virtual company of all of you. -Riti
  4. Hi Everyone I had a ruptured aneurysm 6 weeks ago which was coiled but am at home now. I have fatigue, tiredness and feel weak but that's expected. I have continuous headaches above my right eye and am trying to manage the pain. Has anyone experienced headaches and for how long. Any advice welcome
  5. Good morning All. Just seen this survey request from Headway on Fatigue and thought I would share it. For those that haven't come across Headway they support anyone with a brain injury (they have regional UK branches in all counties I think) and also campaign hard to raise awareness. If you suffer from fatigue post brain injury and have a few minutes to spare, please have a look at the survey, link below: https://www.headway.org.uk/get-involved/campaigns/brain-drain-wake-up-to-fatigue/ All the best Greg.
  6. I’m not sure if this is entirely normal and if others have experienced it but for the last 6 months at least my fatigue seems to be getting worse and worse particularly in my legs where they feel tired as soon as I get to work and they ache constantly throughout the day. I’m just a few days away from my 2nd SAH anniversary and I’m concerned thats not getting any better. I work 12 shifts and I worry that this is to blame for it. Any advice would be gratefully appreciated.
  7. Hi, everyone. I'm new here so allow me to introduce myself. My name is Deb, married with 3 children. I had my SAH on July 17th. I was running a bath and at firs just felt a bit odd, like I was watching the bath fill through a fog. I stood to turn on the cold tap and collapsed to the floor when I came around the bath was full! I tried to stand and realised my left side wasn't working, I felt (and heard) a kind of snap in my ankle and fell to the floor again. Somehow I managed to drag myself downstairs to tell my husband. I was then suddenly hit with the most horrific pain in my head and was violently sick. Husband rang out of hours doctor who , after listening to my husband, phoned an ambulance. I don't remember anything else until 3-4 days later. Spent 3weeks in hospital, had numerous episodes of numbness on left side, CT scans and lumber punctures. I was allowed home on the proviso there was someone at home to "look after me" Well, there was but it didn't last! I have a 14 year old daughter who has suffered with anorexia for almost 3 years, I am her main carer and to say her illness is stressful is an understatement. Pretty much straight away I was back caring for her. It's very much like having a newborn, she is currently beginning to recover (finally) and she has a very strict meal plan. So my day consists of watching the clock for the next meal, snack, shake etc. She is home tutored so I have a constant stream of people in and out of my home, between tutors, doctors, therapists etc..... I really haven't had time to come to terms with my own illness, and I just don't have time for me. I am still suffering terrible headache, noises in my head, (probably tinnitus) fatigue, poor memory, among other things and the thought of going out and seeing people fills me with dread. We are going for a meal tomorrow to celebrate me eldest daughter's new job. I am dreading it, partly the being in public and partly because it's my first time to drive, only got my license back yesterday. I look forward to being part of this community.
  8. The University of Surrey are looking for volunteers to take part in research. If you experienced your first SAH/stroke in the last five years, but have not had a SAH/stroke within the last 12 months, we would like to invite you to take part in a new study. We would like you to tell us about your quality of sleep, and whether you feel it has changed since your SAH/stroke. So what does the study involve? We will ask you to complete a set of questionnaires about your experience of sleep and your quality of life. All responses will be kept anonymous. All participants must be over the age of 18. To take part, please follow this link: http://surveys.fahs.surrey.ac.uk/changes_in_sleep/ To ask for further information, please contact Sophie Light via email at: sl00223@surrey.ac.uk This project is run under supervision of Professor A. Sterr at the University of Surrey. This project starts from the 17/02/2015 and ends on the 05/05/2015. Thank you for your help. (Posted with permission from Admin)
  9. Hi all - unfortunately I find I havent posted here on BTG since I was still in rehab hospital in 2010. Here's a (hopefully working!) link to my original post... http://www.behindthegray.net/vbulletin/showthread.php?6272-Hi-All-Erin-AVM-Removed-SAH-on-9th-June-2010. Please excuse any typo's - i now can only use one hand when typing and have lost quite a big chunk of vision in the left of both eyes so often miss letters Ive now been out of hospital two years. Physio stopped pretty quickly after discharge so its all been down to me and I do my exercises at the gym when I can, although any slight cough or anything I get now floors me so that has to go on hold while im taking the exceptionally long time i need nowadays to recover! I I was unable to return to my old job in dwp as they wanted me back pretty much straight away which i just coldnt do so i had to take a package. its seen us ok isn and although im still not able to do a regular type job - im hoping i will in time to come. Im building towards it but the physical loss, psychological loss, fatigue and loss of vision side of things (plus many more ill not list!) are making that difficult. About a year ago I set up my own photography business - having ound the time now to explore the things I love and interest me. I enjoy it immensely and have made a few sales but its only a very small sideline really. The problem there really is that I find the sales side of it excrutiatingly hard,; I've lost a lot of family/friends and subsequently confidence since the avm/sah. What id like to do in the meantime is volunteering. Ive already applied to Brain & Spine (got a "we dont take/need volunteers, soz" reply from them - yeah, righto!) and headway which is a bit up in the air but really im getting nowhere! I'd like to help in the brain injury area as I have the empathy and experience but am open to most things. I'm also unable to do much 'physical' stuff but i can get around and mostly get by with just using one hand, but it obviously does have limitations. I still feel I have so much to offer. Has anyone had similar problems or any ideas in what I can do? Any advice / help / anything would be appreciated! :confused:
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