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Everything posted by ClareM

  1. Hi Kyle, welcome to BTG and thanks for recounting your story. I too had an NASAH with hydrocephalus as an added complication. Made it out of hospital after just over 2 weeks but I was lucky that it was not during Covid and my family were able to visit the whole time. However my friends husband had what sounds like a very similar experience to you and he spent 3 weeks with no visitors. He appears to be making a great recovery. Must have been very worrying for your family and lonely for you. Mind you if you were anything like me you probably didn't notice much of what was going on - I was asleep most of the time! Glad to hear you are making a good recovery with just a few blips. This is to be expected and will be made worse if you do too much. I think the problem is that as you feel better you do more which can then lead to being exhausted. Best advice I can give you is take everything slowly and leave plenty of time for rest periods. My bleed was over 5 years ago and even now if I push too hard I know about it. Take it easy, be kind to yourself, hope your recovery continues well. Clare xx
  2. No worries Rebekah it's a stressful time. Everyone googles but the advice we always gave our patients in the hospital I worked at was stick to NHS websites or those of charities associated with the diagnosis. 'Headway' and 'Brain and Spine' are good sources of info. The fact they are sending her back to a closer hospital sounds like positive news. Yes a subarachnoid haemorrhage is classified as a stroke. Take good care Clare xx
  3. Hi Rebekah A very scary and uncertain time for you. We can't give medical advice on the site but can tell you about our own experiences. My bleed was a NASAH with the complication of Hydrocephalus. I was in hospital for 2 weeks and remember very little of that period. I was in pain quite a lot of the time with headaches but this was managed with painkillers. Hopefully as mum was seen early in hospital she will recover, as there does not appear to be an aneurysm no surgery should be required unless she develops Hydrocephalus and needs a drain as I did. Have a good look through the posts in the Non-aneurysmal section of the site and read others experiences. However what you need to remember is that everyone is different and their stories vary. It will depend on how alert she is as to when you may be able to speak to her. My husband and family were with me all the time and say I was talking after a few days - however a lot of it was rubbish and I slept most of the time. I presume that due to Covid you are unable to visit? My friends husband had a NASAH in early April this year, she was unable to see him while in hospital but was able to skype call him - the hospital helped with this. He was able to communicate after a few days and has made a remarkable recovery with virtually no deficits, a very lucky man! Feel free to personal message via the site me if you would like more help. Just keep strong, look after yourself and be prepared to give Mum lots of support when she comes home. Be thinking of you. Clare xx
  4. Hi Alexis, it sounds like the after effects of your bleed. Can you tell us more about your event, when it happened and what procedures you had. Maybe then someone with a similar experience will be able to comment. I often had problems forming words post bleed - still do 5 years later - it is a common after effect. I have not had the 'full of water' feeling though I did often feel very unsteady . That has not gone away and I am not good when trying to negotiate narrow or precarious walkways. You should still be able to get hold of a doctor during Covid-19, they usually just do telephone consultations - try speaking to them. Take good care Clare xx
  5. Congratulations on your 6 years Michelle, I'm a few month behind you but understand when you say you can still see small improvements. Lovely that you have got to meet Jan and Andrea - lucky them enjoying your cakes. Hope you get to Lanzarote in 2023. Clare xx
  6. Hi Rajdeep So sorry to hear of your bleed while you were visiting your parents, must have been very traumatic for you and your family. I too had a bleed, 5 years ago. I have made an almost 100% recovery with just some minor deficits with memory and fatigue. I hope you manage to get back to Australia soon, I presume the health system there is better? Not sure what the Covid regulations are in either country but I am sure your husband is keeping an eye on that. Rest, drink lots of water and try not to stress too much as it won't help your recovery. Best wishes for a safe trip home soon. Clare xx
  7. Hi Matthew I am 5 years post bleed and still sometimes hit a wall with the fatigue. It's worse after a busy day at work, not physical work but when I have to use my brain, particularly if a lot of multi-tasking is involved. It would probably help if your wife could read others experiences, so if she could look at the site it may be beneficial. Also do you maybe need to take a look at your working hours - do you need to reduce? If financially possible it may be worth considering, plus it would give you more time with your kids. Maybe worth thinking about, I've gone down from 41 hours per week to 21 - big drop over many years but something I should have done years ago. Take good care Clare xx
  8. Hi Iola congrats on 7 years lovely to hear from you. I am not sure about stress causing a SAH but I am well aware of the effects of stress post bleed. I think Macca is correct with his delegation suggestion and it may be something to consider. I have had numerous problems with my return to work and a lot of it has been caused by stress. My neuro-psychologist has been very helpful with suggestions on avoiding stress and reducing working hours is probably the one that has helped most. Pre bleed I worked 41 hour weeks, since then I have gradually reduced my working hours and am just about to start a new job on 22.5 hours. Hopefully I will manage that until I retire. Although I initially fought against less hours as I considered it 'giving in', now I realise that it makes life much more manageable. Take good care, Clare xx
  9. So so sad to hear of the passing of the amazing Win. Always had a cheery tale to tell and positive words for newcomers. Our loss and a new angel for heaven xxx RIP Win xxx
  10. Welcome to BTG Mark , glad to hear you are recovering and learning the new way of your life. As others have said take things slowly and drink plenty of water. I echo what Subs says that a phased return to work is best. Not sure if you work from home but if you do make sure you are very disciplined when you restart. it’s very easy to overstep things without realising you are doing it when work is concerned. your brain will soon tell you though! Set yourself time limits and stick to them building up slowly. Physical exercise is good too. I have managed to get myself back to running and the gym. Just take it slowly - you’ll get back on that Peleton bike soon! You will get used to the new normal, takes a while but with patience you’ll get there! Keep us updated on your progress 😀 Clare xx
  11. Sad sad news Gem at a sad sad time. My thoughts are with you and your family xx
  12. Congratulations on your anni-versary Kathy. Good to hear that you are recovering well and enjoying the new normal. It certainly does take time and every year brings changes and often improvements. I'm 5 years out now and have forgotten how I was before though my family say there have been changes. Sounds like you have your work cut out looking after your two adopted children however it must be really rewarding - well done! Hope you continue to find support through BTG. Clare xx
  13. Hi Greg and Gemma, great to hear how you both are. I too have just passed my 5 year mark and like Gemma feel I have plateaued. It's strange now that I have difficulty remembering what I was like pre bleed. I miss my old life though particularly my job and the fact I could do so much more without getting fatigued. I am fortunate that I do not have any long term issues other than memory and fatigue. I exercise regularly and manage to work 4 days a week. However I am now at a point where I think I need to stop pushing myself and sit back a little. I am investigating the possibility of reducing my hours further and spending more time doing the things I want to do and seeing the people I want to see. I have spent a lot of time pushing my self to be able to get back to the old me, but now I have forgotten who that is it's easier to start making new plans. Life is so short and there are lots of places I want to visit and things I want to do before I am too old to be able to do them. Clare xx
  14. If that secretary did not have the MDT summary on her screen she must have had computer failure or lost her log in! MDT summaries are clear to see on patients records whatever programme the Trust uses. I'd keep on at them Sarah, or go to PALs and make a complaint. Fingers crossed for you. Clare xx
  15. I really feel for you Sarah as it is a horrible situation not having the information you need to put your mind at rest. I can only reiterate what Sami has said and what I know through my experience of being part of an MDT. If they considered it life threatening or serious you would have been seen by now, Doesn't help with your anxiety which I am sure is through the roof. Try and think positively and if you haven't heard in a week, give the secretary another call or even try and email them. That way it's documented and has a 'paper' trail. Thinking of you xx
  16. Sarah my advice would be to call the author (doctor) of the letter’s secretary. Advise them you have been given a copy of the GP letter and it has caused you major concern. So much so that you are requesting an urgent appointment with that Doctor. Doctors can choose whether to copy patients in to hospital letters but as patients have a right to see them there should not be any information in them a patient should not see. Get on that phone first thing and take the first steps to getting some answers. The only thing I can say is that after a case has been to MDT if the patient needs to be seen urgently it is noted and multiple people would be aware. Good luck tomorrow and keep us posted - sending big cyber hugs xx Clare xx
  17. Hi Liz, must be a very anxious time for you. I am sure if the neurosurgeon thought there was a high risk of rupture he would have operated sooner. Try to keep yourself occupied, I expect you have a lot of Christmas prep to complete as it looks like you will be in for the 25th? I am sure there are others on the site who have been through the same, hopefully they will offer you advice and tips too. Clare xx
  18. Congratulations on your anni-versary, glad to hear you are learning your limitations. I think that is one of the hardest things post bleed particularly with regard to work. As Michelle says be kind to yourself, it’s a long road but hopefully not as lonely knowing you have people here on BTG who understand. take care xx
  19. Casey I suspect it was a side effect of the medication. Anything in that line of drugs always leaves me with a massive ‘hangover’ effect the following day. As Macca says read the patient info leaflet and speak to the prescriber. It may be that if you took in earlier in the evening that the effects the following day would not be so noticeable. Good luck clare xx
  20. Hi Jenni Please stop torturing yourself over not going to the hospital earlier, it may well not have made any difference to your outcome. A lot of people are misdiagnosed at the start which can cause delays as long as yours. The fact you need to focus on is that you are here and although you have vision problems you can see and hopefully things will get better. I believe you have an ophthalmology review in January? (just trying to remember what you have said in previous posts). I think we all wonder what would have happened if we had been treated sooner. I was left from 8pm until 4;30am in a hospital side room with worsening hydrocephalus. It wasn't until my husband kicked up a fuss that I was moved to the nearest neuro hospital, I often wonder if my outcome would have been different if I had been treated sooner. However it is what it is, we are here and we need to be able to mourn our old selves and slowly move on. As others have said it is really early days for you. I was unable to face shopping for a long time, too much over stimulation with all the lights, noise, colours etc - and that was in March! I still struggle shopping, often too noisy and busy but I do go and honestly the Christmas stuff is much better now for me. I'm sure your little girl realises that her mummy has been unwell and is struggling a bit a the moment. But it will get better you just need to take time and find other ways of doing things. I internet shop a lot now it's just so much easier on the senses. You may find that this year you can't do all the things you want to do with her but hopefully this time next year you will have improved a lot and be able to do them then. Take it easy and relax, spend some time with cuddles and reading Christmas books together - or looking a the Christmas catalogues so she can chose what she likes (then buy online ) Be kind to yourself, things will get better maybe just not as quickly as you'd like. Clare xx
  21. Sorry we are unable to give medical advice on the forum. your best best is to speak to your primary care provider or neurology dept for advice. I’m sure they will guide you in the best way. Sorry can’t help more Clare.
  22. Hi Jenni as the others have said you are really early days in your recovery. lots of good advice given already and I will add to it by suggesting you get some noise cancelling earplugs to wear to the cinema. You will still be able to hear but it will soften the often loud soundtrack of a film. Noise is a major issue for me post bleed and I struggle in a noisy environment. Shopping has lost its appeal so I do a lot online much easier on the brain! I hope you continue to recover albeit slowly, we’ve all been there so keep asking questions and we will help with tips and suggestions if we can. take care Clare xx
  23. Hi Margaret I work as a health professional for the UK NHS. I moved into this employment after my NASAH 4 years ago, as working in community was too stressful. I have never worked full time hours since my bleed, I think I would find it very hard. I started back doing 34 hours a week and currently do 30 hours a week over 4 days with a day off mid week as a recovery day. I am currently contemplating dropping another day...... In answer to your question does anybody work full time in the health profession after a NASAH - I don't know. I have been told that not many people return to full time work post bleed which I find hard to believe. However, in my experience, and I have made a good recovery, I think it is hard. Long hours may not be your best friend, how many hours at a time have you been doing so far? You would need to factor in regular breaks and a good work schedule which allows recovery. I hope you manage to come to an acceptable plan with your employer, keep us posted! Clare xx
  24. Hi CM Behind the Gray is a UK based online support group but we have members from all over the world. There are lots of tips and advice on the site and hopefully some members from Canada will see your posting and get in touch. You are still very early in your recovery, please don’t rush back to work, 3 months is quite soon. Phase back slowly and consider reduced hours. What is your employment? Feel free to ask any questions on the site there is always someone there to help with their own advice and experience. take care Clare xx
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