Jump to content

Karen

Administrators
  • Posts

    14,523
  • Joined

  • Last visited

  • Days Won

    540

Everything posted by Karen

  1. Hi Sami, I'm so very pleased that you've been able to obtain some info from your Doc.......you seem a lot happier and hopefully he/she has pointed you in the right direction! Sounds as though you have a good one! Wish all GP's were as helpful as your's! Well done, you've probably achieved something that takes the rest of us months to do! Hope that you had your rest/nap.......? Do take it easy though, no matter how you feel, it really is essential to take a rest, especially with kids! 3 new people have joined the site today, so really pleased! Did wonder whether this site would work out.....but I think that being able to talk is really good and essential with recovery. Anyway, so glad that you've been able to get some help, Love Karen x
  2. Hi Sami, So glad to hear that you are feeling much better. It seems to be the thing with SAH recovery, that it's very up and down, both mentally and physically. Most of us liken it to a Rollercoaster ride - one day up and the next down etc. My recovery has been like that all the way along.....you do gradually get better, but I found that the milestones were so slow coming, that I really didn't notice that I had turned a corner. Sleep and rest appear to be a key player in the recovery......so please make sure that even if you don't feel like taking a nap, that you will put your feet up and watch some daytime tv or something!!! You are still very early on with recovery, so don't overdo things even though you may feel up to it. Speak to you later, Love Karen x
  3. Hi Sami, So very sorry to hear that you've been through the mill this weekend.....good luck with the Doc today and let us know how you get on....will be thinking of you. Your experience of the lack of aftercare, post SAH seems to be the norm. Personally, I think that there should be follow up care for at least the first three months, if not longer. It seems to be that once the hospital have "fixed" the problem, then your basically just left to struggle on, not knowing what to expect or what's normal in recovery. I have obtained more info off the internet than anywhere else.....when I've asked the medics the questions, they just haven't been able to give me the answers. They say simply "that they do not know" or aren't qualified in this area. When you're struggling with the physical and mental aftermath it's just not good enough. Hence the need for sites like this one. Anyway, keep banging on their door and if you're not happy with things, knock a little louder!!!!!!!!!! At the end of the day, the medics can walk away, but you have to live with what you're experiencing and you shouldn't have to struggle. Take care, Love Karen x
  4. I'm 35, married and have a nine year old little girl. I was on holiday at the time of my bleed and just felt a little weird when it happened. Within the time it took me to tell my husband so I had lost the use of my right leg and looked like I had had a stroke. My husband called the ambulance and I was taken to Barnstaple and then transferred to Derriford in Plymouth. They carried out a ct scan and found two anuerysms - one had burst and the other was next to it. They coiled them both via the angiogram and so far so good. I've had another scan since and all appears to be fine. Sami, (RossiGirl)
  5. Hiya, Well, 14 months on and I'm still ultra sensitive to noise, still hate crowds etc. (Probably because of the dodgy eyesight and find the movement too much!) Does anybody else find this?? Could this be depression related or just the SAH aftermath? I'm not quite so jumpy now, but when I'm having a "tired" day.....anything that moves frightens me out of my skin! Love Karen x
  6. Hi Andy and Sami, Thanks for your replies. Andi - How's Heather going? I know that you said that she had picked up and was taking more care of her appearance etc......that must be a good sign in itself? It was really interesting to hear about your experiences in Thailand re: dehydration.......I've only been taking the Isotonic drinks with electrolyte, for a couple of days......but they do seem to help.....not sure whether it's purely coincidence or not.....but I will keep going with them, as I certainly feel as though I have more energy if nothing else!! Do you think that there's something in this or not? Oh well, watch this space!! How are you coping with everything? It must be so hard tryng to juggle everything. Sami - No, I didn't have siezures before the SAH. On the night of my SAH, I had 3 Grand mal seizures and a seizure after my coiling op, due to low sodium levels. Did you have seizures before or after your SAH? I've found it very hard to come to terms with and still worry about having a seizure now, even though I've been seizure free since the SAH. Don't be to worried about your feelings about being left alone. It's perfectly normal, you are so early on with your recovery that you are bound to be feeling as though everything is up in the air. Honestly, it does all get better with time and even now, when I'm having a "bad day", I still don't like being left on my own. Do you have family around you? I used to have many days when I would just sit and cry. Cry out of tiredness, the trauma, fearful for the future and cry that my kids might have lost their Mum. I seemed to have a million and one things to cry over.........but it does get easier with time. Don't get me wrong, I still struggle now, especially with the physical stuff that I'm left with, but it does improve. Just be kind to yourself, listen to your body and talk!!! Hope that the day has been kind to you both, Take care, Karen x
  7. Hi Sami, It's really good to hear from you and please don't feel like a fraud......your experience is the same as ours.....some of us have been left with ongoing problems.....but everybody here is sharing a common theme and we can all help each other out and share our problems! You are very early on in your recovery and I think that you have to listen to your body....when it's telling you that you are tired......rest up! I have found that sleeping is really important to recovery and if I don't get enough, boy do I suffer the next day! I still have good days and bad ones. The bad ones, I try to forget about and bin them, like a bag of rubbish. Having good friends and family is really important also. Just hope that if you can't talk to them, then you will talk to us. Doesn't matter how small the problem, you can share it with us and if we can help, we will! If you feel like writing your story and the background to your SAH, then please do so. You can post it here or write it under "submit article". It's really good to be able to know a little of your background and your circumstances and I think that it also helps others. Just keep coming back to us and share your feelings! Take care, Karen x
  8. Hi to all, Just booked in to see the Doc at the end of the month. He's good, hence the waiting time! Have been wildly searching on the net for an answer to my ongoing problems. Hate doing it, as makes me feel quite scared at what I find sometimes. Often don't feel as though I have a choice, as the medics don't seem to have any suggestions. I have occassions where I feel as though I might be going into a seizure. weird head pain/pressure, weak leg, muscles spasms/twitchy muscles, dizziness. Still, find it all very frightening when it starts to kick off. Anyway, to cut a long story short, I did wonder whether my sodium levels were getting low. I remembered that this did happen just after I had the SAH and I went into a seizure. So, after searching the net with my symptoms etc. it came up with dehydration and lack of sodium. (I do drink lots of water anyway.) Today, I decided to take a Lucozade Isotonic Sports Drink with electrolyte to see if it helps. So far, so good, not sure whether it's purely coincidence or not, but it's certainly perked me up....... anyway, it's worth a try and I will drink a bottle a day to see if it does the trick! Just hope that it's that easy, but not holding my breath!! Take care all, Karen x
  9. Hi RossiGirl, Just to say "hi" and a very warm welcome......look forward to hearing from you. Karen x
  10. [Hi Andy P, Well as you know, I really enjoyed my interview with Alison Wertheimer. However, I did find it quite tiring, but would have loved to have asked Alison more about her own personal experiences of SAH. Still, being the motor mouth that I am, I ran out of time and steam! I'm very much looking forward to being around and seeing the book published. I might even buy a copy to present to my own local health centre! Even though SAH, seems to be so common, I still wonder why GP's fail to diagnose this extremely serious condition. The mortality rate of SAH is dreadfully high and it seems that lack of action by GP's is part of the reason why. Just wish that they would trust people's instincts a little more and start to listen. As you are all aware by my previous postings, that I'm still experiencing problems post SAH, but now, I'm not content to sit back and leave my life in the hands of others. I just hope that anybody else out there, reading this and experiencing problems of their own, will trust their instincts and go back to the medics to get some answers! Anyway, if you are reading this Alison, I really enjoyed the interview and a big "thank you". Karen x color=blue][/color]
  11. Hi Annie, Dover is about a 3 hour drive from where we live, it's a small world really, isn't it? Your work sounds lovely......You should let us know the titles of any books that you've illustrated, so that we can take a peak at you work!! I would have loved to do what you're doing, I'm so envious of your talent! You are very right about us being lucky that we have a National Health Service in the UK. We do have the habit of knocking it, but it's certainly better than having nothing at all. Lauren's party went very well. A bit too noisy for my liking, (and probably the neighbours) not sure why teenagers today have to speak so loudly. It's almost theatrical when you're listening to them. I think that the boys were worse than the girls, but a good time was had by all, however I was very glad to see them all go home! Hence, my tiredness today.... Eric is off to Scotland tomorrow, working away, until Wednesday. I still don't like it when he goes away. I suppose it's going to take a while to re-build my confidence again after this last bout of illness. Anyway, you take care of yourself Annie, Love Karen x
  12. Alison Wertheimer's Book andyp writes "A quick note to all-and some will know already of Alisons Book about journeys of recovery from SAH- due out in 2008. Has anyone else been interviewed? I had a few hours with Alison on tuesday which i found sort of therapeutic in a way. I am sure the book will be of great benefit to families and new sufferers of SAH ..there really isn't much about! Also Southampton hospital should soon have their DVD ready for patients and families as well as health professionals..did anyone take part in that ? Also what sources of help has anyone found??" (This article has been submitted by andyp under the "Articles" category, as well as being posted in the SAH Discussion.)
  13. Hi Andy P, Great to see you on the board! Yes, I've had a better day.........it was a little hard to drag myself out from under the quilt this morning, but managed to give myself a kick up the backside. I managed to achieve quite a bit today and it's lifted my mood. I'm feeling physically better, less tired, but it's knocked my confidence again. Still, I suppose with time it will improve. Just wish that I could get at least 3 months of improvement under my belt, before anything else crops up. Lauren's birthday barbie is tomorrow, so have had the pleasure of cleaning out the barbecue. Everybody here loves barbecues but nobody ever cleans the damned thing out! Spent the afternoon sorting stuff out for her party and blowing up balloons. I can't believe that she will be 16, time flies. Anyway, glad that you've joined us! Karen x
  14. Hi Annie and Andy, Thanks for your replies. I'm still feeling a bit numb, let down and frustrated by my hospital experience. I can't believe Andy, that you are unable to get any help at all with looking after Heather and Louis. I can well imagine your frustration over it all. I remember when I first came out of hospital having to fill in forms for incapacity benefit. What a farce that was.....It took them 3 months to decide that I wasn't entitled to it.....I have never seen so much red tape and bungling. It seems that some people are able to milk the system, left, right and centre and the people that genuinely need help aren't offered a bean. A good friend of mine has a disabled son, who's now 16. He has severe learning difficulties and physical problems. He also has seizures, which are hard to control. She's had to fight all of his 16 years, just to get the minimum of help with him. She never complains and I really don't know how she's coped with all the problems....nothing has come easy to her and as a carer, she still doesn't get the help that she shoud have. In my eyes she's a Saint and deserves so much better. Do your friends or family help you out? You sound as though you could really do with a break? Annie, thanks for your support and I am learning to take more rests throughout the day. I am getting more concerned that I'm feeling so fed up. I can't seem to find the "spark" that normally re-ignites me after a bad couple of weeks. If I continue like this, then I will definetly have to get some help with these feelings. Love to you both, Karen x
  15. Hi Annie, Eric has been with me throughout my scan etc. The MRA (MR angio)shows up the arteries a lot clearer than just being scanned in the MRI machine. Still, I will stick to my 'gut feeling" that something wasn't right last week. I have been right in the past with my instincts and I don't want to start doubting myself. I'm afraid that if I do and if it happens again I won't listen to what my body is telling me. In the past I have had a tendency to listen to what the medics tell me and take it as read and it's been to my own detriment. I think that's probably one valuable lesson that I've learnt and that's to trust and listen to what your body is telling you. I just don't want to take the risk of putting my trust in anybody else, as twice now, they haven't been right. I wish that I could, but I just can't. I will just have to see how I progress in the next few weeks and if I don't feel as though I'm improving, then I will go back to my Doctor. Nobody seems to be able to give me any answers as to how I shoud be feeling. I know that my eye still gives me quite a bit of pain, but again I can't get any answers from anybody as to "is this normal". It's pretty frustrating, as I'm nearly 14 months on from the SAH. I still try to remain as positive as I can be, but it's the mental side as well as the physical side of stuff that you have to deal with. Just hope that somebody keeps looking out for me! Thanks for your good wishes though and they really do help me. Take care, Love Karen x
  16. Hi to all, Just had the results of my MRI.....They are negative, which is great news, but still wondering why I was experiencing what I did?? Would have been a little more reassured if I they had given me a MRA, as scheduled, but just going to get on with things and will put it all down to another "blip"in my recovery. My daughter is 16 on Friday, so she's having a little party with friends. Have busied myself with decorating and cleaning the summerhouse + barbecue in anticipation of Friday night. Just hope that the neighbours will be talking me to me the next day! Still, you only live once and I'm just so glad to be able to enjoy the experience!!. Take care all, Love Karen x
  17. Hi Annie, Firstly, I hope that you are keeping well, (before I get too wrapped up with my own problems!) My scan was carried out this morning. I'm feeling really fed up, abandoned and let down by the health service in ths country. I'm sure that I can't be the only person to have experienced problems and it just makes me so mad! Well here goes! At first I didn't think that the local hospital were even going to carry out the scan, because of the metal coils in my head. My coiling was carried out in a Neuro specialist hospital about 20 miles away, therefore I'm dealing with two hospitals that in an age of new technology etc., can't seem to be able to communicate with each other, or want to take any responsibility with my aftercare. I'm trying not to get frustrated, but jeez......it's so hard! Considering that the hospital where I was scanned today, is the same hospital that I was admitted to last week, you would think that they would be able to get it right? May be I'm asking too much? After ringing the hospital where I had surgery, they agreed that I could be scanned. Anyway, finally I had the scan, but they didn't give me the MRA (where they inject dye into the arteries) but only a MRI. By this point, I had totally forgotten about the dye. I put it down to my short term memory being kapput also. I asked them when I would get the results and they told me in two weeks time. At this point, I was feeling so dizzy and rough after being in the scanner for half an hour, (couldn't even sit up for a couple of minutes) that I really couldn't be bothered or have the energy to say any more. Just felt totally miserable and let down. I decided to ring my GP at my local surgery and see if he can do anything to speed up the hospital scan results. Anyway, he's going to give them a call tomorrow.......................I'm not betting my last dollar on getting any results, but hey, I still live in hope. (Would like to think that I'm a "half glass full" person and not "half glass empty") I hate to think that my experience with SAH is going to make me any different as a person. I will keep you posted! Love Karen x
  18. Well. tomorrow is the day when I'm in hospital for my MRA. Not looking forward to going into the MRI Scanner again. Is it something that anybody ever gets used to? This will be my 4th time and I still liken it to being stuffed into the inside of a toilet roll tube. I shall try to keep my eyes shut as I'm going in, but I bet that I will have to take a peak........wish they would blindfold me as well as putting in ear plugs! I'm not normally claustrophobic but find it hard to relax.......especially when they hand you the panic button and then walk out of the room. Oh well, watch this space! (May be I'm just a whimp!) They will be scanning for any new aneurysms and the possibility of a re-bleed from the coiling that I had carried out last year. Lots of mixed emotions tonight and finding it hard to sleep. I want them to find out what's been kicking off with my head again, but really hate the thought of another hospital stay. Beginning to wonder whether having the aneurysm clipped would have been a better option long term, even though the procedure is riskier. A bit fed up with it all though and too much time to think about it. Still, hopeful that they might give me some peace of mind either way. Just want some of my life back!! Will let you know how it goes! Love Karen x
  19. Thanks Annie for your reply. Yesterday wasn't too pleasant a day for me and even though I thought the dizziness was better in the morning, it came back with a vengeance in the afternoon. I've decided to start using the Journal/Diary on the site and keep a log as to how I feel each day. I finally got myself off the sofa at 3.00pm yesterday and had a soak in the bath. I picked up after that and the day improved. I know that if I don't rest up regulary during the day, then I really pay for it. Lauren has been great this week and she's looked after her old Mum really well. She's back to school next week and I shall miss her not being around during the day! Hope that the day is kind to you, Love Karen x
  20. Just to let you know that my scan will now be done on Monday. Wish it was sooner than that and it's taken nearly 2 days for them to come back to me. I've been told that if I deteriorate before then, to go straight to the hospital........not sure whether that reassures me or not! Take care all, Karen x
  21. Andy, Your reply was thoughtfully and beautifully written.......Heather is a lucky lady!! Karen x
  22. Well Folks, I'm still at home. The hospital called me this morning to say that they were pondering over admitting me back to the ward or bringing me back as a day patient. They were meant to be phoning me back this afternoon, but no call came. So feeling a little despondent and wishing that I had stayed in hospital. They assured me that I would be scanned today before I left on Saturday, otherwise I wouldn't have left the bed. I'm feeling a little better today and the pulsing/pressure feeling in my head has got better and not quite so intense. However, the fatigue has kicked in once again. I just need some peace of mind that the coils are doing the job that they're meant to. I have lost some more weight as my appetite is nil.......perhaps I could introduce the SAH diet?? Still, there's more than enough of me to cope with that one! Anyway, I will just wait and see what tomorrow brings........ Hope all is well. Love Karen xx
  23. Hi Annie and Andy, Thank you for your lovely messages. They really do help such a lot. It's good here tonight....Lauren has got some mates over in the summerhouse and she's cooking pizza for them. I can hear the conversation buzzing away in the kitchen..........it feels good to be normal at the minute. Another tired day today and some more scary head pain. In one sense, I'm looking forward to going back to hospital tomorrow. Like you say Annie, someone can look after you and you can pass your burden over to them. You summed it up beautfully and I can see why you are a writer, your words are very comforting. Andy, really sorry to hear about the financial problems that you're having and it must all be such a worry for you. Take care of yourself. So glad that Heather has picked up, it's wonderful news! Speak to you soon, Love to you both, Karen x
  24. PS Annie......I've had to cancel the pamper day..........was so looking forward to it...............still hopefully another time! Love Karen Xx
  25. Hi Annie and Andy, Thanks for the big hug, as I certainly could do with it. I was taken into hospital on Friday, as I was experiencing the Mother of all headaches and eye pain etc., along with a load of other stuff. My Doctor was great and phoned the hospital to say that I was coming in. I came back home late yesterday afternoon (great birthday!) after begging them to let me out, I was so sad being in there (I shed so many tears, think that the other patients thought that I was a loony!). They think that my aneurysm might be leaking, so I'm booked in for a MRA scan on Tuesday. They wanted to keep me in, but said I would promise to rest up if I went home and if I felt even worse to come straight back in. My Obs were fine, same as the other bleeds, when I had normal blood pressure and pupil reactions etc. So, I'm not sure whether that's a good sign or not. My emotions are all over the place...........so excuse my typing as I'm finding it hard to think etc.....It feels like a ****** nightmare again and have mixed feelings as to what they might find or whether i want them to find anything........probably doesn't make sense. I'm so tired at the moment and feel just like I did when I left hospital last year. I feel that something has definetly kicked off again. I don't know how I'm going to handle this, if I have to go through it all again. It's feeling very surreal and I'm hoping that I will wake up and it's all going to be a bad dream. Lauren is so upset, bless her and I really don't want to put the family through this again. The house is a torrent of emotions. I have a great need of feeling that everything is in order and have packed a bag for Tuesday, just in case I have to stay in hospital or earlier! Anyway, hope all you guy's will keep posting on the board. If I do have to stay in, then hopefully Lauren will be able to post my news to you. Love to you all and big hugs, Karen xx
×
×
  • Create New...