Wem

Hi Dawn, It is a long time since I last posted on this site, but your plea for support really touched my heart. As you are probably aware I have suffered badly with fatigue from Day 1 and still do. I am now almost 2.5 yrs post SAH but my energy levels have not really improved much for some considerable time. I have yet to meet a medical practitioner (either General or Neuro) who is willing to take the long term effects of my SAH more seriously than 'there is no clinical reason why you are not able to perform perfectly well' I agree with Louise you are probably becoming anxious about the return to work and that in turn is likely to be draining your brain power. Mood swings affect my energy far more since my SAH than they previously did and that could be happening to you right now. In my humble opinion you need to find some peace in your heart and that will help to unlock your energy levels. It is a tough decision, but if you are not feeling fit for work then I think you already know the answer.........you shouldn't be going back until you are well enough. I have come to the conclusion over the last few years that most of us strive really hard to get back to a 'normal' that doesn't really exist for us anymore and work is just one aspect of that. I am continuing to work (24 hours per week) and I am continuing to find it very difficult but I am lucky, I work 90% of my time from home. If I was going into an office every day I do not believe I could cope. I am pretty much convinced I could not do any other kind of work, as my brain stamina and physical stamina are so badly depleted since my SAH, some days it renders me almost incapable of lifting a teaspoon! No real pearls of wisdom for you I'm afraid, but bucket loads of empathy! Hope things start to improve soon, Wem

Hi Leanne Warm welcome to the site, as others have said you are amongst friends here. I think the question you raise is a very interesting one. I have to admit I lost all my confidence in the early sages following the SAH and whilst I did not want to have to deal with everyone else's emotions, I was frightened to be left on my own. I was always a coper in life, very independant and never really liked anyone to make a fuss of me. Whenever I was faced with major life changing events and trauma I always preferred to sneak away quietly and lick my wounds in private until I was ready to face the world again. A trait that has driven my poor mother to distraction over the years, denying her all her natural mothering instincts! I saw my role as chief protector for my adult children and elderly parents and really struggled to adjust to being dependant on others. I did withdraw following the SAH, but those close enough to me recognised my behaviour was not far removed from what they would expect of me. They kept a respectful distance and stayed in regular contact by 'phone. It worked for me and my family, but I agree with all the other comments you have received, take care not to become too isolated. Counselling can and does help, talking to your GP can be a good source of support. Above all else remember that your family love you and that they are hurting too. Help them to help you, don't shut them out completely. Find a solution that works for all of you. Take care, Wem

Hi Chloe, Pleased to hear you feel you have been making good progress, though I cannot help but feel it is still very early days for you yet and that may well be why you are experiencing a particularly bad headache right now. One other thing to consider is that you may be starting to suffer from rebound headaches. It appears that if you take pain killers on a regular basis over an extended period of time, then the painkillers themselves begin to induce headaches. I suffered from that at about 3 months and had to take the bold step of stopping all pain killers until things settled back down. Might be worth checking that theory out with your doctor? On the OH visitor situation, my experience throughout my recovery has been that it is likely that you will receive conflicting views from various health officials. My approach has been to follow the advice and guidance of those who can demonstrate good sound knowledge and experience of supporting patients following any kind of brain injury. I am certainly willing to listen to any health official on the peripheral of my exacting criteria but I tend to keep an open mind in terms of accepting/acting on their advice. On the return to work issue, this is one that many of us have faced and my advice is to take it easy. Try not to rush back too soon, because as with any illness the improvements you are experiencing at home may evaporate when you subject your brain and body to more demanding mental and /or physical exertion. Hope the headaches start to settle back down again soon, be kind to yourself and don't get too down on the bad days (they will pass). You appear to be doing amazingly well! Take care Wem

Well done Win, and on the song theme: What have you done today to make you feel proud? Take care, Wem

Hi Lin, I have major anxiety about the dentist chair. My anxiety was present pre-SAH and has been heightened post SAH. I have a cracked tooth that will need extracting at some point, but my dentist is just keeping an eye on it at the moment as he wants to get as much time between my SAH and the extraction as possible. My GP offered counselling to assist with my dentistry phobia, but as the technigue adopted is to make you face your fear - I declined. Having said all of that, when the day finally dawns I realise I will have to take a very deep breath, hold on tightly to the nurse's hand, and go ahead with the procedure. I am sure you will be fine Lin, quite often the fear of an event is much worse than the reality of the situation. I am sure all will go well for you, try not to stress too much between now and Feb 21st. Take care, Wem

Victoria, this is a subject so close to my heart. I have posted on numerous occasions on this very subject and like you live in hope that one day I will be able to live my life without the constant need to plan and re-plan when and how I do things. I broached the subject recently with my neuro surgeon consultant who advised that in his opinion there was no clinical reason for the fatigue. His advice was to just 'get on with life' and he cited an example of one of his team who had returned to full time neuro surgery following a SAH. Don't mean to be churlish, but the words - bully for him came to mind (!!). Aside from the bluntness of his response, the one piece of advice I took away from the conversation was that I need to re-train my brain following the extreme trauma it has suffered. If I started out as a non runner, I would not expect to be able to run a marathon after achieving no more than say a half a mile jog. So my new year brain (marathon) training includes, days when I undertake moderate exercise, followed by days of little exercise, with one or two days of harder exercise thrown in. I am careful to assess which tasks create the biggest 'hits' in terms of zapping my energy and work my routine around them. I have in the past fallen into the trap of avoiding certain tasks, because they were the biggest hitters. Now I am striving to include everything, but in a much more managed way. In much the same way as when training for the real marathon it is always sensible to include some hills in the programme to help you to sustain short sharp bursts of energy. My shiny new training regime doesn't prevent me from hitting the wall, yesterday was a fine example when I felt so weak I could barely lift a teaspoon. Today I am marginally better, but I am aware I need to be careful to slowly ramp things up again. It is very frustrating and I take heart from everyone on BTG who who have offered support and advice to help to get me through. I am nearly 2 years post SAH and I have come to the conclusion that we have to develop our own coping techniques to manage the fatigue. I live in hope that things will continue to improve and whilst I accept that I will probably never have the same high energy levels that I had pre-SAH, I am determined to attain a level that will enable me to participate in life again. Be assured you are amongst friends on BTG Victoria, who all understand how difficult it is living with the constraints of post SAH fatigue. Sending hugs and warm wishes your way, Wem

Win, my sense of smell is much keener since the SAH. I can smell alcohol and coffee at 50 yards these days! Though it may just be wishful thinking as I drink neither since my SAH. Wem

I have come to this thread rather late and do not have any pearls of wisdom to add. I would just like to pick up on Sarah Lou's point about it all starting to become clearer when you hit the 2 year mark because that is uncannily similar to the way I am feeling right now. My grown up son & daughter have been telling me from almost day 1 that I need to relax and let my brain recover in it's own time. They acknowledged it is so easy for them to say and probably so much harder for me to do, but I am finally beginning to see they were right. The new me is more patient, more relaxed and I am much more selective in how I spend my time. I have over the years wasted time and energy on people and pasttimes that gave little in return. No more (well nearly!). Like Lynne, I have cast aside friends that took and gave nothing in return. It has left me a little isolated, but one of my personal goals right now is to build new friendships with people who matter. A little challenging when I don't have the energy to go out and meet people but I am sure I will find the opportunities and my life will be richer for it. I have always been a great believer that experience is what makes us well rounded individuals. This is an experience I did not choose to have, but it is one that has made me a richer person. I have been able to see life from so many different perspectives and also see how shallow life can be if you let it.

Michael, all sounds very positive. Can I just say that the love and support you are giving your brother right now is very moving. Your posts capture the very essence of what makes a good family a remarkable one! I hope you and your family manage to have some time for yourselves over the Christmas period. Wem

Wonderful news Michael. Hoping your brother sees further improvements from the next session. Take care, Wem

Daff, I think most on here will be able to relate to this post. My theory is that as we become physically stronger we expect our brains to move at the same pace as our bodies. For the most part they give it a **** good try, but like a finely tuned set of balancing scales, if we add one more thing into the mix, then we are hit with overload. It isn't always imnmediately obvious what causes the overload, again my theory is that it is usually the cumulative effect over a period of time. When it happens to me if I look back there were subtle signs that I either didn't recognise or I chose to ignore. This whole journey is almost like going through the teenage years again (without the fun!). We think we have life worked out, only to find through bitter experience that we got it wrong, not sure how much sense that makes?? Other than the fact that I feel I am learning some valuable lessons as I meander along this path, but I don't always take heed of these lessons. When I crash I lose the use of my legs and turn into a jibbering wreck. My last major episode saw me crying on the shoulder of my male boss at work and also my GP (that resulted in the failed attempts to get a neuro phsyc referral). The whole thing left me feeling extremely embarrassed, anxious and depressed. My theory (again) is that we suffer from pathological fatigue, that is so diffcult for us to understand let alone explain and during a 'crash' that fatigue feeds anxiety, depression and stress. You are so good at pacing, I am sure I can learn lots from you. As others have said don't be too hard on yourself, this phase will pass and you will come out of the other side a little stronger than when you went in. I also believe our brains plateau and need to take a rest for a while, Kris may have something when she says a period of 'pain' is a sign that the brain is repairing itself. Take heart you are doing really well, rest up on your plateau and enjoy the view. The summit can wait a little longer to be conquered. Take care, Wem

Interesting thread Kris. For me it has to be inner peace and fatigue management. I am constantly bargaining with myself 'if I do that I won't be able to do this' This in turn uses up too much brain power and only adds to my fatigue. I also think I am at times guilty of avoiding situations because I do not want to experience the fatigue crash. I recognise the behaviour pattern, but fail to do anything about it.

Hi Alison, I can imagine the time with your horses yesterday was very theraputic. Acceptance is probably one of the most difficult challenges we all face. Experiencing a SAH is such a life changing event. Most of us were high achievers, rushing around living busy lives before the SAH and to deal with coming to what feels like a dead halt post SAH is emotionally very diffcult. You will get there - one day at a time. Take care, Wem

My experience was similar to Penny's. My family had been sent home following the emergency admittance and my coiling operation was scheduled for the following day. Unfortunately I dropped into a coma that night, my family were asked to come back to the hospital around midnight and told I was not likely to survive. My son and daughter rushed back in to find I was already on the operating table for the EVD insertion and the surgeon requested verbal consent from my daughter over the telephone whilst he was operating on me! Must have been extremely scary for them both. Hope all goes well for your hubby, Wem

Brialliant news Dawn, I hope you find the reduced hours really improve your quality of life. My return to work is progressing steadily, I am up to 17.5 hours per week working from home. I do now make regular, though infrequent, trips into the office for face to face meetings, this entails driving on a busy stretch of motorway into a city centre location, followed by 4-5 hours of uninterrupted office work/meetings followed by the drive home. I get a sense of achievement from doing that, but I am usually wiped out for a few days afterwards. Work can and does take a lot out of me, but there are also positives to be gained from it. Financial gain is the biggest driver, closely followed by structure to my day to day life, and improved self esteem. As a a by-product of my return to work, my short term memory, multi tasking skills, concentration levels and analytical skills have all improved. Though they are still way short of my pre-SAH position. I believe achieving the right work/life balance is important for all, but for anyone with a long term illness, it has got to be essential. The problem is until our recovery plateaus, and we reach full acceptance, then we risk setting our goals beyond what is realistically achievable. The conundrum for many of us is that we do not know what is achiveable, until we have tried. Even then, if we were previously high achievers, we will invariably push ourselves harder to wring out a few more ounces (or grams) of energy!! This is a journey of discovery for all of us and the biggest question is: What do we now want out of life, and will returning to work deliver that dream?