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Sara Pendlebury

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Sara Pendlebury last won the day on January 13 2015

Sara Pendlebury had the most liked content!

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About Sara Pendlebury

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  • Birthday 05/05/1964

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    Chamonix Mont Blanc
  • Interests
    Visual arts, Skiing, languages, travel

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  1. "Capacity, not capability" - that's so helpful Macca, thank you
  2. Hi Iola, Sorry to hear that you had the trip spoiled headaches - but brilliant that you had at least some times where you felt great! We are all different of course, but just to share some things I have noticed in case it helps..... I live in a ski resort, and have started to go skiing again regularly. When I was discharged from hospital, knowing where I live, they gave an altitude range to stick within for the first few months, and thereafter said any altitude (around here) would be ok, as before. Altitude can impact everyone though - and as people have said above, it may be that you were at a higher altitude than I get to go. A plane is normally presurised to about 2100m..... How much higher than that were you? My husband is regularly ill if he climbs above at 3100m, but fine below, and he has no brain injury.....Maybe try a lower resort another time and see if it makes a difference? Skiing is physical, and creates such a wonderful rush of sensations, plus you need to keep in perfect balance etc. keep warm and protect yourself from the elements, deal with speed, other skiers around you (I stil find this the most difficult, confusing) lots of equipment, the expectations of your group you are skiing with, long days, etc..... there are a lot of things that you will have been asking your body and brain to do again for the first time. Could that also have an impact on you too perhaps? I find, after 19 days this season ( yes I am tracking them!) I can ski like I used to before, almost. But, the following day I am very, very tired and have a headache, without fail. It is like back in the early days after the bleed. I am beginning to think it's a combination of fitness (lack of it!) and the sheer explosion of sensations and expectations that are exhausting me. I don't know the answer except the usual 'pace yourself'..... For me it's a balance between being able to do something I passionately enjoy again, and not being wrecked for days later.....I havent found that balance yet, not least because unlike you I don't feel unwell at the time, but later....if it's a physical thing you love doing persevere, maybe tweak the altitude, the length of time, the effort etc? Hope that helps and you get some more days in the mountains soon x
  3. Elizabeth, all my best wishes to you and your husband. The advice here is so helpful, with the same so consistent message. Poor Stamina, tiredness, poor short term memory and inability to concentrate/work on computers for too long..... It all sounds very familiar, and mine was in June. He is doing well and is not a wimp, not in the slightest. Timescales seem different for everyone, but whatever, they are long. Difficult for a type A (as you describe him) to accept, but we are simply not in control, not anymore. You cannot 'man up' and beat it in submission, (as everyone says). Loss of control can be of course very difficult to deal with. Control is a basic human emotional need, especially for type As. I had a similar bleed to your husband and could not agree more that the focus is not on the recovery. Yes, yes, the outcomes of this particular type are good when you look at survival, but not quality of life. I would agree that the video and the headway info is very very helpful. I also found the book 'A dented image' very good. http://www.amazon.co.uk/Dented-Image-Journeys-Subarachnoid-Haemorrhage/dp/0415386721 It is discussed on this forum too. Several survivors are interviewed across various themes and subjects. This, more than anything, set my expectations for a long road, not necessarily to recovery - can you even get your old self back completely? - but nevertheless to somewhere good. The title itself is apt, as the psychological image is impacted. And these are definitely journeys.....there is no magic bullet. I have to say, reading your account I did feel a little angry, on both your accounts. What do his colleagues mean by 'they want him to pull his weight again?' .... I am sure he would love to do that too! It's just not possible right now as he has an injured brain. It is not easy having been so highly trained, so competent, to deal with the changes he will be noticing right now. It's difficult too, to still have the cognitive abilities to see, to know, exactly what you cannot do. Are these really 'medical people' that are implying that it is time now for him to pull his weight ? They should be ashamed at the shallowness of their medical expertise. That said, your husband is gaining depth as a practitioner. I can only imagine how tough it is navigating his workplace at the moment with such colleagues, and his own expectations and hopes. But this experience could also strengthen his patient-facing skills and broader medical knowledge. This is a recurrent theme here, and in a dented image - the hidden gifts that in time we can make use of. There has been a lot of great advice on this thread, which I take too. With these colleagues in mind, and in the medical environment he is in, I would also suggest that his colleagues be asked to watch the video, read 'a dented image' and look up headway. Maybe not now, but in time, would your husband be up to actually taking on educating parts of the medical profession - including surgeons - about the hidden disabilities behind the apparent good outcomes? He is in an ideal place to do this, or to coordinate/support someone else to do this if its not for him. Best wishes to you both
  4. Thank you all for the lovely comments Daffodil - great that you are getting physical. Personally I find it both a great help and great challenge! Super Mario - I love the idea of refurbishing the hand carved spinning wheel, and the therapy of restoring it, for all to see now. Jillbb - still driving ponies! That's a good adaptation from riding, can imagine how you might still miss riding nonetheless. Before this happened I was involved in Adaptive skiing. A helpful preparation for now. For former skiers, there can a sense of loss, which can be replaced by the joy of actually getting moving again in the mountains. Carolynusa - that is exactly what you can offer people Ponigirl - someone else's brain, yes indeed. Sometimes it's not always a worse brain. I find I am less bothered about what seem to be now to be trivial things.... Teechur - tell me a little about your running. Specifically - is there any research out there to guide how to pick up quite an intense physical practice again? Or did you 'just do it!' ? How did you approach it? I was told to resume my old life over time. But I don't think they realised what level I was talking about. They saw a middle aged-ish woman and imagined her pottering on easy slopes. That's not how I ski (-ed)! And I live in a ski resort. Turning to the professional skiing community doesn't help for clarity either. It can get patronising, as of course, I am not at the previous level. I am ok with that: I am just happy to be skiing again, would like to develop it, but at a pace that works.....in fact I have no option but to do it that way. I was delighted last week to ski with a group training for some professional exams. It was marvellous, I stuck with it all day too, and felt great to be back. I was curious to see what I could do, and what I couldnt. But I was totally wiped out for three days afterwards, of course! Nothing in the day indicated that I would crash with exhaustion afterwards, but crash I did! I have to say though, that each time I crash, despite that, I feel better for the prior exercise. It may seem a bit much to others that I am talking about skiing like this - but in some ways I was a better skier than walker before - so it is all relative. At whatever level, whatever you can manage for you, some degree of physical movement can help. I am trying to find what that reasonable, therapeutic, stretching-but-not-too-much-level is.....and yes, always keeeping kind to myself, not rushing. ( well not too much ....) So any advice on picking up that again, and any knowledge of research on what works after SAH would be great! Any leads welcome!
  5. Hi all and thanks for your replies - Happy New Year to you all again I know on the scale of things I am very lucky. At one point I did not know I would live, let alone walk again, so to have to deal with - I am told temporary - tiredness and loss of some mental skills, on most days (I am only human), seems a great outcome! My neurologists are pleased with the scans ..but say it will take a year at least to 'turn the page'. From what I see here, and have read elsewhere, I am prepared for that to be longer still. Of course 1 year or 5 or 6 is a long time to spend, without support once the drama has ended. Great that this forum exists. - Win - I have seen you love singing - brilliant to have something like that. For me, I am an artist and I love skiing. Both these have always been my outlet, and even more so now. You are so right about being told you would not walk and now managing 60/100 yds. Who is to know really? BTW I grew up in Tunbridge Wells, also deepest darkest Kent. - Kempse - still coming back six years on that says it all doesn't it, about support, information and how long the impact can last. 6 years ago I had not even heard of SAH, let alone tried to pronounce it! (and then have to deal with it in French)! Its funny, as for so long I was buoyed by the idea of how lucky I had been (the truth)....I forgot to see that its also shame that it happened. That feeling of surviving is so strong it does (again on most days) trump the self-pity. But as I grapple with the '6 months on' reality that is changing a bit, I admit. - Carolinas - June then? Mine was on June 11. At the time in hospital as I recovered I wanted to reach out to others at the same stage but we were none of us in that 'frame of mind'! Good to meet you Good point on the photo Teechur. Actually its vanity too I posted it on Facebook and I have never had so many compliments. Because I am not feeling that glam at the moment I have been using it, but I thought it hilarious that so many people would rave about a picture of me that was so very blurry! but it was also picture taken the night before I had a scan at 7 weeks, and the all clear. And I completely agree with all the other points you make about drama, gratitude, and gifts that the 'damage' also brings in its wake. In fact as many of you say, life is not necessarily worse, just different.I have found that very much. I have found that the things I have had to drop are letting me do other things more......As part of my rehab I have set aside an area in a shed as an art studio (I never did before) and have started to teach others to draw, paint, print, and do things for myself in there too. I am optimistic that the injury has given me space to be creative. I was a ski instructor, so skied to a good level, was working on improving......When the snow came 6 months after the bleed, I worried could I ever do it again. It has been unexpected: I am delighted to say I can and that is really something I am very grateful for. What has been a reality check is that I can't manage it for very long (minutes only)before the fatigue hits...I am hoping that that will get better in time. I am not bothered from a professional perspective, but just personally, as I love this sport so much. (I will ask a question on this in a separate thread). Thats sot of where I am - lucky, yet daunted at the 6 months stage. Meanwhile most around me think I am already 'better' I see this is common, I am not moaning, it is what it is
  6. Hi - I live in France, (but am British) and found you a few days ago. I just wanted to say 'hi ' and how pleased I am to 'meet' you. Wishing you all the very best for 2015! I had a nasah in June this year - completly normal, then suddenly being airlifted to hospital in a helicopter with 6 docs and paramedics at my side. The medical staff were brilliant throughout, and saved my life over the next 21 days. I have never known feelings of gratitude like it! But of course, all the drama is now over and its a matter of dealing with the slow progress ' back' to a reasonable level of health. (But there is not a 'back' is there?). Reading what you say has been very helpful, insightful, inspiring and calming. And a bit of a reality check too Look forward to talking to you in the New Year
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