Lin-lin

Hi Sally Recovery is hard work, isn't it? It's not just the physical side. It changes you socially, professionally, financially and emotionally. But the doctors don't warn you about this. My SAH was in November 2009. I was a Solicitor, I ran marathons and socialised a lot. I was told I would be better in 3-6 months. This was completely unrealistic and caused me to feel depressed early Summer when I still found myself unwell. I saw my Consultant in July and have had a CT Scan, (to assess hydrocephalus.) I am awaiting the results. The aftercare is not overwhelming, although I concede that at least I have had a scan. My Consultant concentrated on my physical progression. Although I'm battling fatigue and insomnia, these are so common post SAH, I don't think they're considered problems. Common symptoms maybe; but they're new ones on me. I consider what happened to me a 'career changing' disability. I am sensitive, less resilient to bounce back from upset, slow to work through problems, forgetful and I don't like spontaneity. I'm probably depressed. I'm presently on ESA, the benefit which people receive when they cannot return to work because of ill health. You can earn up to £93 pw whilst claiming ESA. Have you been invited to your Job Centre for a Pathway to Work interview? I found this helpful. Arrange one if you've not been. It's about receiving assistance in getting back into employment. I will probably 'fail' my medical too - the questions are deliberately narrow. The fault lies with the system, not us. Go to your local CAB for help with the appeal and DLA forms. At the CAB recently, I've been covering reception. One might think I'm overly qualified, but it's truly my level, for now. Ill health is a humbling experience. A psychiatrist concentrates upon medicine as a treatment for mental illness. A psychologist explores our emotional health with behavioral intervention; counselling for want of a better word. If you feel that you need therapy, maybe your GP can refer you. You don't need a psychiatrist, sweetheart. It would be impossible for anyone to bounce back from a life changing event without any ill effect. Not only that, it is our brains which 'broke!' The very thing we use to process situations, feelings and responses. Your fears and concerns are perfectly normal and counselling may help you harness your emotions constructively. It's about looking at the situation differently. Don't trouble yourself with benefit forms anymore. Let the CAB do it. Any other specific concerns, run them by me and I'll do my utmost to help. Lynne xx

Blimey! You both have been through so much and I think you're doing fabulously well in the circumstances. You've got such an intelligent and pragmatic handle on this and full credit to you. It must be awful that Ez is troubled with physical problems; but in the context of what happened to her, I think she's made good progress already. It seems that more improvements are expected and I wish her well. One thing that you will find, is that the recovery is slow... It's frustrating and it will get you down. However, out of the blue, something positive will happen and it gives you strength to carry on further. I'm sending you and your family lots of well wishes and look forward to hearing updates when you are ready. Lynne

Hello Just sending you and your wife some well wishes and hoping that things are stable at present. In terms of whether we consider our stories 'successful' depends upon our frames of mind. Speaking for myself (and I know others,) there have been occasions when we've considered our circumstances negatively. There have been moments when I've wanted my old life back immediately and anything short of that is a 'failure'. I now view things differently and compare my progress post SAH instead of comparing myself with the old me. I will probably never be exactly the same as before; but that's not all bad. I'm more empathic and appreciative of the important things in life and I now laugh at the silly little things that would trouble me. I don't know whether you've read other threads here. Ash is a recent member who is going through a similar event as you, but with his Mother. We're all approachable on this site and if you need specific advice from any of us, just ask. The recovery is long and slow; but accepting that was part of the battle for me. Lynne

Hi Ash Just sending you and your Mum some well wishes. Don't worry at all about replying to us, we understand how busy and stressful a time it is. I'm glad the move to the new hospital went well and given it's closer, it will alleviate some logistical problems for visits. Things seem to be going in the right direction. Lynne

Welcome to the club! You'll find lots of support here. I've find it fabulous and it has lifted me from a very blue episode. Looking forward to hearing from you soon, Lynne

We've met before on the Brain and Spine Foundation! Glad you've found this site. It has helped me massively. You will probably receive lots messages over the next few days. (It may be a bit quiet tonight however, because we're probably all preparing for bed now- despite being insomniacs!) Just want to say welcome. You and your wife will find good support here. Lynne

Thanks everyone! As suspected, I'm not alone on this one! Insomnia seems an almost inevitable symptom of the SAH; and like other elements of the recovery, we've just got to go through it and can't side step it. The Temazepam is presently working, but the tablets will run out and I doubt my GP will prescribe them again. He seemed reluctant on this occasion, but I'd not slept properly in two weeks and was in distress. I'm glad some of you are reporting that your sleeping improves. That's comforting to know. It's really nice to cross reference with your experiences. Thanks again and sweet dreams for tonight (!) Lynne

Thank you for your update. It's always lovely to hear from you. It's difficult to always remain positive, I know. Sometimes however, it is allowable to let our emotions take over and have a good cry or a moment of frustration. This allows us to take stock and we find greater strength to deal with the next phase. I previously had a personality type that would keep everything in and I would always be the strong, stoical one; however I now appreciate that this doesn't always assist us and I now find a 'funny five minutes' always helps! As an outsider to your situation, I sense that you are handing this very well. Your feelings of anxiety are perfectly normal. I'm glad you are having support from your cousin. In situations like this, we want definite answers and timescales. I now appreciate that neurology is not an exact science. I know you just want your Mum back to normal and anything short of that is disappointing. However, in the context of something serious having happened to her; there is no present deterioration and she has been moved to a normal ward. She is facing in the right direction. If it's any consolation, when my cousin (who is a doctor) saw me in High Dependency a few hours after admittance, his clinical (but perhaps stressed) diagnosis is that I would not make it. I'm just sharing this so that you can appreciate the strides the human body can make, even though it looks initially bleak. The idea to play her music is fabulous and your Mum obviously responded well to it. Don't underestimate the value of your visits, I'm sure they are helping with your Mother's recovery as much as the medication. Take care Lynne

Hi everyone, I'm posting a really unoriginal thread here. A SAH survivor suffering with insomnia! Hardly revolutionary is it! I think the process of commencing work, albeit it reduced hours, has made the matter worse. I return from work absolutely shattered and sometimes nap afterwards, thus affecting my ability to sleep at night. I've tried not napping, but when I'm fatigued, my speech becomes slurred and it's not the 'shexiest' look I've adopted! My doctor has prescribed Temazepam. I know this is not the long term answer. How did you all manage? Regardless of how tired I may be of an evening, the moment I go to bed, my brain lights up like a pin ball machine and I become very 'alert'. Does this problem last long? Thanks in advance! Lynne

My SAH was on the 21st November 2009 and I underwent coiling on the 23rd November. I saw my Consultant in April 2010 and he determined that it was ok to drive. Things were cleared with the DVLA by May 2010. As Gary says, tell your insurers. They're generally fine if the medical profession and the DVLA allow you to drive, but best to tell them. An insurance company will try to invalidate any claim given half the chance! I found driving fine after my SAH. I kept the journeys very short to begin with. I haven't tried a long journey yet, because I get fatigued. To echo Gary again, it's the vision element that may be the greatest concern at present. You're still very early into your recovery. Don't put too much pressure on yourself at present. I know it's frustrating and I remember how I wanted my old life back immediately. It's taken me eight months to finally respect the pace of the healing that's going on inside. Take care L xxx

Hi A warm welcome to the site. It has helped me enormously. I didn't suffer the exact same as you. I suffered a SAH on the 21st November 2009 following a burst aneurysm. One common thread amongst us all, is that the recovery is slow. Accepting this is part of the battle. It's still very early days for you and it takes time for our emotions to settle. It took me around six months to become patient! I tried to slot into my old life but it made me tired, upset and frustrated. I am now working within new parameters and lowering the bar means I am now 'achieving' instead of 'failing.' Let us know how you are getting on and we'll be more than happy to help. L xx

Hi! Before I answer your question, I would just like to point out that I am not a doctor. All I can do is share my experience. Only your consultant can answer your question specifically. I wasn't fussed on drinking before my SAH, but these days, I enjoy sharing a nice bottle of wine with my boyfriend. (My SAH was November 2009.) I don't drink much because I can get tired at the best of times and I was a useless drinker before my SAH anyway! My consultant told me that it was ok to drink. Like everything in life, moderation is the key. Just be mindful that alcohol can make you tired and it's also a depressive. It's for this reason that I don't drink alone. Post SAH we may be prone to fatigue and low moods anyway. I see no problem with sensible, social drinking however. Enjoy the wedding. Have a quiet week preceding it. I find a quiet few days before an event helps. Take care L xxx

Hi Holly I'm sorry to hear of your boyfriend's ill health but glad he's improving. I'm very surprised to hear of his parents reaction. To blame a person for something like this is absurd. It strikes me that they may be in shock and are finding it difficult to process the event. My brain haemorrhage was in November 2009 and the information given to my parents is that it was congenital. It was initially considered by my family that pressures at work caused the bleed since I suffered tremendous work stress in the 18 months preceding my illness. The medical profession dismissed this. As your boyfriend's health improves the more independent he will become from his parents and I am sure that this is something that you can eventually iron out with him. Your boyfriend is likely to be very sensitive to stress at the moment and the fact that he may become embroiled in disputes between those around him may cause him a lot of anxiety. I'm unsure what contact you're having with him at the moment, but try not to overload him with too much stress. This will be easier said than done given the family's stance against you, but it's likely that he will not be up to resolving complicated family dynamics at present. Let him know that you care and try not to percolate on the same level as his family. He will be grateful if you can remain calm. I avoided high dramas like the plague. Whilst I am no doctor, I will stick my neck out on this one - this is not your fault. Take care L

Hi Ben Thank you for taking the time to update us. We appreciate you're under a lot of stress and so it was kind of you to find the time to let us know what's happening. It was very gallant of you to say that Jane is coping valiantly. It's amazing what the human spirit can muster in a crisis. May I say, that I think you are coping very well too. I appreciate that there has probably been tears, frustrations and anxiety; but this is a normal and healthy reaction to a big event. Well done to both you and Jane in finding the strength to adapt to your new circumstances and striving to make the best of your situation. It must not be forgotten that a SAH doesn't just affect the patient; it ripples to family and friends too. Don't forget that you will also need support on occasions. I hope Jane continues to make improvements and please send her my best wishes. L

Welcome to the site. I am very sorry to hear of your family's bereavement and I hope you find support amongst us. I was fitted with a drain because I had hydrocephalus, but I do not know when it was fitted. However, as you have heard, our experiences are different and with regard to our treatments 'one size doesn't fit all.' Speaking with your Mother's Consultant seems to be your first step and s/he will be able to answer your question directly. My cousin is a doctor and when I next speak to him I will ask when I had my drain fitted. I have asked my parents but they cannot be sure. All I can say at this stage is that my SAH was at around 3 p.m and I was conveyed to a local hospital (with no neuro special ward) almost immediately. Upon my SAH being diagnosed, I was taken to a larger hospital 40 miles away. This meant I reached the specialist ward around midnight. My parents do not think that I had a drain fitted within this time, but I will ask my cousin, he will know more. Take care L

Thank you for the update. I find myself regularly 'tuning in' to see if any progress has been made! I'm happy that improvements have began. You have acknowledged that the recovery is going to be long and this acceptance will make the journey a bit more bearable. Remember a long journey is not an impossible one. Projecting forward always seems a longer journey than looking back. You are handling this brilliantly. Maybe this site should hire you out as a professional SAH visitor! I have no doubt that you bring support, calm and joy to your visits. Keep up the good work. If able, let us know how your Mother is doing, we'll be listening eagerly and more than happy to help. L xxx

Thank you to everyone who replied. It's strange reading my first post, because I seem to have moved on. I've developed some perspective and upon reading the experience of others on this site, I feel a little foolish. I've started my volunteer work at the C.A.B (really enjoying - I work two days per week for four hours,) and I have seen people in very sorry circumstances. This site and the C.A.B have re-calibrated my mind and I now feel more thankful than resentful. I had believed my SAH to have weakened me, feeling like half the person I was. However, I am now noticing that it has brought with it a life education that no law book has taught. Naturally, I'm very tired after work and am re-building my confidence, but there are lots on this site who would be grateful if this were their only struggle. Thanks to everyone who helped me on 'my dip!' I appreciate that you all took my concern seriously even though you had read situations which were worse and maybe had lived through worse yourselves. L xxxxxxxx

Very sorry to hear about your present circumstances. It's hard when your world turns upside down. I hope the last few days has brought some improvements. The 'not knowing' is very frustrating and your reaction to it, is quite rightly, one of anxiety. You feel that you want to know the exact circumstances so you can plan for the future. Keep Janey in as good spirits as possible. I firmly believe that the calm environment around me in those early weeks helped. You will need looking after too. Post your updates and worries to us and we'll do our best to answer. I wish your family nothing but the very best. L xx

Hi Welcome to the site. Nice to have you here. I'm further into recovery than you. My SAH was on the 21st November 2009. It's very early days for you. I know it's scary, but the fact that you're able to email so soon after your SAH is a sign your making excellent strides. That alone should give you some confidence. You've probably heard it many times before (and will again) but rest is so important for you right now. Just concentrate on getting as much rest as possible in the next few weeks. You're going to be very tired, it's normal and try not to fight it. Let us know how you get on in the next few weeks. L xx

Hello again, I'm sorry today's been bad. Unfortunately it's normal, but I appreciate it's unpleasant. I spent most of January in bed with headaches and nausea and it just gets you down. The only way through it is rest, rest and a bit more rest!!! Very frustrating if you are an active person by nature. You will get better, believe me. Break things down to manageable sections. Get to the end of July with as much rest as possible. Let that be your goal. Re-asses August when it arrives and if you feel better, think what realistic goals you'd like to achieve. Don't put too much pressure on yourself though, you strike me as someone who might. ;-0 My follow up Consultant's appointment was on the 9th July 2010. I have a further CT scan on the 22nd July. The reason for the scan is because I had hydrocephalus and nearly had a shunt fitted. It's this which they are more interested in assessing, not necessarily the SAH; so I'm unsure whether all SAH survivors have a CT scan. Others will have to advice you on this. Hope tomorrow is better. L

Hi Gary Welcome to the site. I don't think you realise how well you're doing! It's amazing that you are able to email this soon into recovery. I'm guessing your previous fitness is benefiting you well right now. Well done you. I had my SAH on the 21st November 2009, so I'm further into recovery than you. Whilst no two people are the same, I'll share with you some of my experiences. It may help. If I had my time back again, I wouldn't be so hard on myself. I wasn't the most patient and wanted to get back to where I was almost immediately. It is hard when your life changes overnight and it takes time for the emotions to catch up. I was a bit 'rage against the machine' and found it hard to accept that I was no longer running marathons and training in the gym with an ex marine! I had to lower my expectations and work within new parameters to find joy in things again. My long runs of twenty miles plus on Saturday mornings, changed to a mile walk initially (in March) and I have built this up gradually; running little sections of my walk, to eventually being able to run a few miles again. (I am very slow and don't think Paula Radcliffe is too worried!) For the next few weeks, you need to rest as much as possible. I remember how frustrating this was, but truly, you are probably suffering a considerable fatigue right now. Things which brought me happiness around the same time as your recovery was having friends visit or they'd invite me to theirs. I probably wasn't up too much else, but it will come Gary. I remember that fuzzy feeling! It reduces, honest! It is only when you're a few months down the line and you look back at this moment that you'll appreciate how early you are into recovery. I am confident that in 6 months time, if you read a post from someone who's SAH was six weeks ago, you'll be advising them to 'hold their horses' too! If you were like me, you will need to rest up for a few more weeks. Instead of being frustrated, look upon it as laying an important foundation stone to build your strength upon. Your sporting background will tell you that rest is an important (and neglected) area of fitness. I am already amazed by how well you're doing. L

Oh Ash, I am so sorry you're going through such a difficult time and that you've had an added worry regarding your Mum's health. I hope she's stable at the moment and is able to make improvements over the next few days. Clearly, I'm no doctor and so can only give you the patient perspective, but I hope it does something to keep you strong. The initial hours of any SAH sufferer, or indeed stroke, are pretty gloomy affairs. No one can tell you exactly how things will pan out and you fear the worst. From the patient perspective, I was unconscious a lot in the first week and was under very strong medication. I only know the fears that friends and family had, after the event. At the time, I was calm. Irrespective of your Mother's ill health at the moment, she may feel quite peaceful within herself. I have to say, regardless of what was going around me, I have to describe my time in High Dependency as 'comfortable.' I hope this is your Mother's experience too. Again, I'm no health professional, so I'll just comment on my experience. When I had my recent follow up appointment with my Consultant, the waiting room was full of SAH survivors and those who'd had strokes. So they are not impossible conditions to come through. Your Mother's previous fitness will stand her in good stead. Will be thinking of you over the weekend and I wish your Mother well. I hope Monday brings better news. Keep in touch and let us know how she is. L xxx

Hello again, I want to thank everyone for taking the time out to reply to my post. I do not think it a coincidence that I have began to feel better. I read all your replies with interest and they really gave me a boost. It's nice to know that I have people to turn to who know exactly what I'm going through. I start with the C.A.B tomorrow (volunteer.) I am anticipating that the training is going to tire me out. I've agreed to do two days to start. Whilst I feel that I can probably do this, I expect to be washed out by the experience too. I have been honest with my new colleagues about my condition and have told them in advance that I am likely to need some breaks throughout the day. I will have an early night tonight to give myself the best opportunity tomorrow - I just hope I get some sleep (oh, the joys of insomnia! - ha!) Thanks again L xx

Hi Ash Welcome to the site. I'm new here myself and I have found it a tremendous help. Like your Mother I was fit and healthy before my SAH in November 2009. Eight weeks prior, I ran the Berlin Marathon! This is how my family helped me during my recovery, hopefully it will bring you some ideas. I was not overloaded with too many visitors. My boyfriend and five relations visited. They all had calm personalities and no one brought problems to my hospital bed. My friends showed their support through cards, letters and text messages. Ask your Mother's friends to write her letters. I was always more engaging after receiving mail. I signed a letter of authority allowing my Father to handle my affairs. I had nothing in the 'outside world' to worry about. My personality changed a bit. I was more sensitive and too placid. Just go with it. Your Mother may find even slight challenges overwhelming and perceive that sometimes a well intentioned comment to be against her. This is not the time for Army style motivational speeches! Your Mother will be very tired over the next few months, particularly now. She will be totally washed out with the simplest of tasks. It's all normal, but the recovery path is long and there are no short cuts. I'm eight months down the line and still suffer with fatigue and insomnia. (I'm much improved, of course.) Your Mother clearly has a very supportive son in you. The fact that you're on this site, seeking advice speaks volumes. You seem a nice soul and this will help your Mother enormously. You seem to have the requisite qualities to manage this. Remember that you need support too and don't neglect yourself. Off load to us and we will try to help. Best Wishes L

Hello everyone. What a lovely little community I've stumbled upon! I've received more warmth from you than from some friends I've known for years. (Did anyone else find out who their true friends were post SAH?!) I need some advice from experienced survivors - the ones of you who've 'been there, done that' and are currently wearing the t-shirt! My SAH was on the 21st November 2009 and when it first happened, my only concern was the physical symptoms. I felt fine inside. However, recently it's reversed. Physically, I'm improving. Granted I'm not the same, but I'm getting stronger every month. (Just battling the usual fatigue and insomnia.) However, the better I get physically, the more I notice the emotional dip. I accept that I'm worried about very real problems at the moment. I resigned from my job recently and am battling to survive on benefits. I'm having to cope with bank charges; my car insurance being more expensive because I'm unemployed (?) and I'm struggling to find money to join a gym because I can't afford the fees (despite the fact that doing so would improve my emotional well being.) I therefore have very real problems which preoccupy me, but am alarmed by these empty, tearful episodes. I cannot stress how out of character it is. I'm the 'strong, happy' person in the group normally. Some people still call me 'Smiler' and I can't help but notice the irony! I'm doing the right things in keeping contact with friends (the jovial ones!), exercising (within my new limits,) and I hope to commence volunteer work soon. But I can't shake this flippin gloom! Did anyone else experience this fallout more than 6 months on? I've an appointment with my Consultant tomorrow and will mention it. Thanks Lin-lin