Liz D

Hi Mel I asked the OT on Tuesday did I have to see the doc. She checked my file and said yes because it was a manager referral?! I think I've got that right, it was our ultimate manager, the acting head of nursing, that did the referal. However, I see my GP on Monday and will let him know everything and if I still feel unsupported on Tuesday by the doc then I'll ask to speak to someoe else. But it's all so exhausting, how do people cope without family support! And it can be true that the worse place to work with health issues is a hospital! I told her my aim was not to be sick, her reply was that it's a bit unrealistic not to ger sick. I told her that would be a failure, she didn't get it. I joined the union last year. Even putting the SAH aside, she knows I have high blood pressure, which in itself can cause someone go off sick!! What none of them seem to see is that I am highly motivated,have been from the start of recovery. But I have decided they don't deserve me I have very good refrences and am a hard worker. Once I'm back to 35 hours and coping I'm going to look for anther job, probably part time. That's my goal. Thank you so much Mel. Liz

Hi Adam I can fully appreciate a lack of understanding from managers. I returned to work, on phased return basis, in December. Unfortunately I don't find the doctor I see at Occy health particulary supportive or understanding. However, my office manager is not particularly suportive either. I feel I'm being put under pressure. On Tuesday an OT did a workplace assessment. She was lovely, very understanding and encouraging. When she finished the assessment my manager got ladled into her (in front of me and 3 others!). My manager complained that she's used to phased returns having a start and a finish, she's never heard of it being open ended! When I said the doc said it could take 6 months, she said NO! She said she was stuck in the middle of this and was unable to allocate my hours?!! I've no idea what she meant by this. I reminded her that is was ME stuck in the middle and this was about my health! The OT was furious but handled it very well and I think was glad to go. Just before my shift finished, my manager came to me with a schedule. She wants me to increase my hours by six every two weeks which will have me back at 35 hours from the end of March. I tried to explain to her that if I do too much I get headaches and feel unwell. I was blanked. I then told her that I would be back to the hospital for an angiogram in February. She rolled her eyes! I have to discuss this schedule with the Occy H doc on Tuesday when I see him. I felt completely crushed. I'm starting to feel that my health is a nuisance to the running of the office. My colleagues are wonderful. They were shocked. They have been so supportive and understanding. I couldn't speak to my family on Tuesday without getting very teary, in fact I'm getting teary writing this. We have a couple of temps covering the hours that I don't work. One of them gave me a lift home on Thursday. She was lovely. She told me I was doing amazingly well but she also said she notices a lack of compassion from the office supervisor and manager. So it's not me being sensitive. We don't know each other as she was given this job last July, when I was on sick leave. But my lovely husband said something on Tuesday that he had no idea how important it was. When I said that prior to my SAH I would have faced goliath but now I just crumble. He then said that he can see the "old me" starting to come back! Liz xx

Hi Diane I first try soluable paracetamol, works quicker. But I'll then try codeine. But if it's very severe, I take dihydrocodeine 30mg, although I get very sleepy with this, so it has to be unbearable. Although I'm now at the stage when I kind of know what type of headache I'm going to get. If your husband's not getting relief from over the counter tabs then he should say to his doctor and get a prescription. My last prescription for dihydrocodeine was written on 6 October for 30 tabs and I've only used 5 but it's handy to have them in the medicine cupboard. Liz xx

Hi Kelley I too left hospital with no info.I did ask what happens now and I was told by docs 'go home and heal'! Even my GP was surprised. However, two months after I was discharged I got a letter from the neuro nurse specialist, apologising saying that no one told her I had even been admmitted and that she normally comes to the ward and introduces herself. She also enclosed a lot of information but it was a bit too late. It was then I discovered that I would have a 3 month follow up appointment, which was actually 5 months. I didn't even see a doc from the team that looked after me but the doc I did see told me that he remembered me being on the ward! I seem to be 2 months behind because of the initial error. I've to have an angiogram after a year, which will be February. So far I haven't heard anything from the hospital, so it could be April before they call for me. It might be a good idea for you to contact your consultant's secretary and ask her what the usual procedure is. Liz

Yes I did and scarf and gloves. But I think I need a fur hat. I have a few hats but I've noticed that I've had to put my coat hood up over it. Apparently it was ony 1 degree colder at the north pole last night!

I woke with the worst headache I have had in months, I even felt a bit sick. The temperature here yesterday at 2pm was -8. I've not being going out because we are snowed in, only the main road is clear but you can't get to it! I was popping in and out yesterday when my sons were clearing our path and the pavement and I think this is what caused the headache. It was -19 last night, we now have very long icicles hanging down from the roof. The town looks absolutley stunning. I wont be going out until the weather improves a little! Most businesses are closed. The health centres and the hospital have cancelled all apointments are ony seeing emergencies! Liz

Hi Karen I still sleep with the door slightly open and the upper hall light on! Although with all this snow (we just over 2 feet) I'm sleeping with the curtains open and let the light reflected from it in! This is why this site is so amazing, there's always some one who can relate to even the smallest thing! Liz xx

Hi Kelly I remember well the anxiety. I would wake up during the night thinking it was happening again. So much so I slept with the light on for several weeks, didn't like waking up in the darkness. During my procedure (the first part when you are awake) I lost all sensation down my left arm. Both the professor and consultant neuroradiologist couldn't tell me why it happened. They think I have a nerve where I shouldn't! In the early weeks of my recovery I would get odd sensations along the lefthandside of my tongue. I would feel a sort of pressure at the back of my neck (I have my left vertebral artery coiled off as well as the aneurysm) which would continue along my tongue and it would go numb. I very easily get pins and needles in my left arm, hand and fingers. I also get pins and needles down my right leg and foot. If I get very tired my left arm can get quite shaky. However, I am left handed and am still able to write very easily. This numbness has eased over time. I now think that it was caused by the healing the process. It probably took about 6 months for it to ease and now I only get a very slight numbness on my tongue. You are doing amazingly well, it took months for me to even think about looking at the computer! I've emailed you a link to information on SAH, I hope you find it useful. Liz D xx

Hi Anne Welcome to the site. This site is full of very friendly and helpful people. There is usually more of us on daily but with the holidays it's quite quiet. I too am a very independent person and found it hard at first having to have so much done for me. But it gets better in time and I am now as independent as I want to be. I too work in our local hospital but am quite shocked by the lack of knowledge and understanding they have for this condition. My manager (a former sister) was really surprised to hear(from me on my return to work) that I actually had an operation!! When I was told I would be off work for at least 3 months, my first thought was, right "I'll" be back at work in May! I returned to work at the start of December! I had to learn to not put this kind of pressure on me. You have been through a lot. You need to give your body time to heal. However, we are all different and our recovery times are different. Good luck for the 4th, yes I an understand not wanting this headache again! Take care of yourself and please let us know how you are doing when you are up to it. Enjoy the new year celebrations. Liz xx

Hi Helen I returned to work last week. I am an NHS administrator. Our occupational health service is supervising my return. I was working 35 hours before my SAH. I am working 6 hours per week, spread over two days, and like you they are separated (Tue & Thurs) until 19 January, when I meet with occy health. They expect my return to take about 6 months to work up to the 35 hours. I don't think there is a particular law that covers this, I believe that it's up to each company to decide their policy. As even within each health board it differs. My daughter works for NHS 24 in Glasgow. They use an outside company to oversee their occupational health service, who almost to a person give employees the full 8 weeks, at full pay, for a phased return. My health board also has provision for up to an 8 week phased return on full pay, but very seldom does it takes 8 weeks, I was told usually 4. But usually employees have had broken bones or maybe an operation, for which they are recovering. But there is provision for peole like me or maybe someone who has been on long term sick leave due to stress. In this instance they don't use the 8 week system. As my phased return will be at my pace, I only get paid for the hours I work. I suppose it makes sense. I have worked for them for 2 1/2 years. I got 8 weeks full pay and 8 weeks half pay when off sick. To then pay me full pay for a few hours each week for possibly 6 months is quite a lot. It suits me as I don't have to feel guilty about my colleagues having to pick up the slack, as there is money in the budget to employ a temp for the hours that I don't work. I hope this helps. Liz

Hi Paul You could almost be describing me to an extent. I'm the rock in my family. I'm the organiser, I'm the one my sibilings (there are 5 of them) or our 3 children come to for advice. Almost everybody leaned on me. My youngest sister once told me that I was the strongest person she knew. Even at work (I work in a hosptial too) I was very organised and always hitting targets. This devastated my family. It was normally me they would turn to in a crisis. We were all trying to come to terms with what could have been. I feel that I now have to step back a little and let them find their own way through this. I beleive I am a little colder (sounds horrible, I adore my chlidren!)I am a little bit more distant. But I can't comfort them and tell them that everything is going to be fine because as Holly said we know that life is fragile. They have to navigate this themselves and I beleive they will be all the stronger for it. My husband and I have had problems. We've been married for 24 years. I went through a period of not wanting to be anywhere near him. I couldn't see this from his point of view, only my own. There are all sorts of thoughts that go through your head. If he hadn't weathered the storm then I don't think we would still be together. I was angry at him for not being as strong as I think I would have been in this situation. Yet how do I know how I would be if things were reversed?! But things are finally starting to sort themselves out but we both agree, that counselling will be a good place to start. We both have to get to know the new "me". In our hospital the job of a ward clerk can be very demanding, so maybe she's tired when she comes home. Is she on a phased return? But you have done the right thing finding this website. You will find support and lots of information. I've been working my way through all the posts and can't count how many times I've thought OMG that's me! Finally I wasn't alone. Gosh I've rambled on a bit but hope it helps a little. Take care Liz

I feel quite left out! That's one of the things that has changed for me. I no longer get headaches with weather changes! Liz

Hi Rod That's what I was told. My GP said that's why docs do home visits to check BP until it's under control. He said your more relaxed in your own surroundings. Maybe, but I know I would get a little anxious before his visit, hoping that it hadn't risen. This was because I knew that if it had he would increase my meds and this would make me feel more tired etc. I felt it was a bit of a catch 22! Louise, that's interesting about what you say about coming off Atenolol. I have put on some weight since starting the beta blockers but have noticed a little loss since my GP changed the tabs. I put it down to being less active because I tire more easily on them. I live at the top of a steep hill and until I was started with beta blockers was able to walk up it. I can't now, I get too out of breath. Yet excercise is supposed to be good for BP! Again a bit of a catch 22! However, since he changed the tabs I am out more (as said before I'm even back at work). I'm working hard to try and get off the beta blockers. I watch what I eat, I'm even drinking beetroot juice each day (quite expensive) and also take Co-Q10. I just feel that if I can get rid of the beta blocker then I will have much more energy, as I did in June. My biggest gripe is that I have been told he has no idea why my BP went up. Blood test showed nothing. But something changed 4 months post SAH and suddenly it went up. Apparently "lots of people" have high BP and docs dont' know why!! I have learned to take a deep breath when I ask a question either of the neuro's or my GP and get told "well we don't really know what caused that"!! Oh dear rant over. Liz xx

Hi Louise Atenolol was the first beta blocker my GP put me on. I couldn't function. It made all my symptoms worse, the forgetfullness, foggy brain and I was back to having two sleeps during the day. Even though it did the trick and my BP came down, it wasn't a good time for me. When he changed it over to Bisoprolol he then explained that Atenolol is a general beta blocker, meaning it goes into your brain! That's why my symptoms got worse. Bisiprolol is heart specific. My symptoms are much better now, even though I'm still not able to be as active as I was before the BP meds. But I returned to work yesterday, on a phased return basis, there was no way I was capable of going back on Atenolol. Liz

Hi Rod My blood pressure went up 4 months after my SAH. At it's highest it was 210/115, it's now stable at 130/84. I take Lisinopril in the evening and Bisoprolol (beta blocker) in the morning. My GP told me it would be putting too much into my system to take it together. He chose these as they are less likely to give me headaches but take longer to work. My GP checked my BP 3 times a week when it was at the higher end (at one point he was thinking about doing a 24 hour check) to eventually checking it once a fortnight, which took 3 months. The reason for the 24 hour monitor was to try and see if there was a reason for it rising. i.e. was I doing too much, was I getting anxious etc. It never happened, thankfully, as I would have had to go into hospital for this. I was told by my neurologist not to have caffeine and alcohol, so I don't. But I like my chocolate. What I've found is that if I have any more than a few squares, my pulse starts to race, so I have to be careful. Little but often is my motto:) I agree with Bogbrush, there does seem to be quite a difference. I think you should speak to Merrill's GP about it. He should be able to give you an explanation, I wouldn't worry about what he says to you about buying the monitor. Your only trying to do your best in helping Merrill in her recovery. Take care Liz

Hi Chris Firstly can I say glad to hear your mother is home and doing well. I remember the early months well. I remember the wrong words coming out,or I couldn't find the word at all! I couldn't get the word aneurysm out - I always said paramedic! It all gets better in time, time is our best friend. The wrong words coming out no longer happens but I can still have difficulty getting the word out. It's like your brain is surrounded with fog. We can now laugh about it, it's a bit of game in our house - guess the word mum's trying to say! But it has taken us all time to adjust and to get to this stage. I can still see the pain/fear in my children and husband's faces. There is a booklet with information on recovery on www.brainandspine.org.uk, this will help your mum and your family. This is a wonderful site with wonderful people. I would suggest that you read through as much as you can. Tell your mum that you've found this and tell her about what you've read. Let her know that there are people out here who have gone through the same and that she's not alone. I was quite a bit into my recovery before I found BHTG, but what I can say is that since then, I have become more confident. I got strength from reading about people who are way further down the line than me but who have gone through the same physical symptoms as well as the phsycological effects. You're already helping her by searching for information, well done you. The more information you have the more you will understand this. Liz x

Hi Rod I have problems with my BP too. I was starting to feel almost like my normal self in June. Then my BP started to rise. It has taken 4 months for it to get under control. I found it took aobut 3 weeks for my body to adjust to each dosage/medication change. One of the tablets I take is a beta blocker and this has slowed me down quite a bit. I was getting very low during the period of medication adjustment. Before the meds I was at the stage of going out everyday, coping with housework and generally feeling that "normality" was just around the corner. On these meds I was back to having very little energy, needing to have a sleep during the day, getting more forgetfull and more confused at times. My GP explained it was the meds. They were slowing everything down but the alternative of raised BP was too dangerous. Finally we have found a combination of medication that works for my BP and that my body has now adjusted to and it has been stable for the last 5 weeks. I'm now no longer sleeping everyday (only on days when I have been particularly active the previous day), I can potter around the house (I still can't do as much around the house as I could in June) and I don't get as confused. I was (and still am) a fairly confident person. However, I now suffer from some anxiety. I can get a mild panic attick (my heart starts to race and I perspire, particularly my hands and face) when I have to go somehwere/do something that I haven't done for a while. It's the worry that I'm not sure that I have the mental/physical energy to cope. I have to take my time to do things. Plenty of deep breaths and mental coaching that all will be well. If I am running out of time and am going to late/miss the bus or whatever, then so be it. At least I get there. I also have problems sometimes understanding what is being said. My consultant thinks that maybe it's my comprehension/concentration ability that's the problem. I still have times when I cannot make out what is being said and have to have it repeated 2 or 3 times or have it said very slowly. It could be I have some hearing loss but I also have been told that they will wait until a year has passed, then assess it and maybe give me a hearing test. I fully understand how Merrill feels that she is going backwards. That's how I felt. Now 5 months on from my BP first starting to cause problems I'm back on track. This is such an up and down thing to recover from. That was what my GP kept reminding me of. He said not to think of itas going forwards and backwards but to think of it as up and down. I was to think of my down days as rest days. It's a form of positive thinking, rest days are healing days, healing days are getting better days. This helped me and maybe it will help you and Merrill. Take care Liz

Louise (spelt it properly this time!) I live in Galashiels. I think the doctor at occy health has never come accross SAH by what he was saying to me. Things like - very unusual for someone of your age to have this (I'm 49). Also on discussing going to back to work he said "I'm sure you'll manage this, we don't want you coming home from work shattered, now do we!!!!!!!" I get the feeling he's read a leaflet! From what I've read from others that's exactly how I'll feel! Liz

Hi Lousie He's known me for 20 years. My two sons were in and out of hospital when they were tots. My family are west coasters and hubby's English, so he saw me just get on with it. He knows me really well and got a bit of shock when he heard about the SAH, so he also knows what "normal" me is like! Liz

Hi Sam My GP visited me at home. Sometimes 3 times a week. My first visit to the surgery was four weeks ago. He didn't want me to go to the surgery because "it was full of sick people"! I just had to call the surgery for a sick note, which was for 4 weeks at a time. I agree with Anne. He's seen me from the beginning, he's seen me on very good days and also on some not so good days. He was horrified when occy health doctor, in August was wanting me to agree a return to work then, it was my first visit with them! He's completely on my side and has told me he will be fully involved in my phased return. You can always ask for a home visit if the journey to the surgery and back is too tiring, I certainly would. Best wishes Liz D

Hi Waterball I hope your husband continues to do well. I've only recently found this site, although I am months into my recovery. This is a wonderful site. I have found so many answers to questions I have had and I am still working my way through posts. It was such a relief to find others who understand what we all go through. Congratulations on qualifying and enjoy your graduation, you've work hard for it. Best wishes Liz D

Hi Bessie What a time your mother and family have been through. I can understand your frustration but recovery is a slow procedure and for everyone it's different. I had my SAH in Feb 09. I had very little problems, other patients were surprised when they found out what had happened. I was dishcarged home 7 days after my procedure. I was warned that things may change once home as in hospital everything was being done for me. Boy were they right! It took weeks before I could even stand up in the shower, I couldn't get my left hand to grab door handles and I forgot how to go down stairs (I went down on my bottom). It's now 9 months on and only now will my GP discuss returning to work. My GP was great. He explained that my brain was relearning how to do things,either by repairing old paths or making new ones. He said even when you have what seems like setbacks your still moving forward in other areas. The brain dictates the rate of recovery and if it's had enough it slows down, has a rest and then it starts again. Your mother is a fighter, look at what she's been through. I was a secretary for the Department for the Elderly in our local general hospital. This included the Stroke Ward. Don't be too upset at your mother being here. When I thought I was gong to be returned to my local hospital this is the ward I wanted to go to because of the different disciplines that come to the ward each day. If I were you I would speak to the consultant looking after your mother. Ask the ward sister when does he do his rounds and tell the sister that you would like to speak with him. Tell the consultant how you are feeling and what your worries are. Write down what you want to ask so that you don't forget to ask all your questions. Sometimes even speaking to the nurse that looks after your mother each day can give you an insight into how she's doing. My thoughts are with your mother, you and your family. I remember how scary this was for my family. Wishing you the best Liz D