Greg 21.01.15 Posted January 20, 2020 Share Posted January 20, 2020 Dear All, I haven't visited BTG for a while now, not sure why, I always get such great support and understanding. I think perhaps having found things getting harder over the past year or two, I have wanted to give less "air time" to SAH related problems as they were already taking up more of life than I would wish. This time five years ago, I was just getting started in the gym, a normal session, just a tad late out of work and getting going on the session. Then as we are all familiar with, that thundering pain at the top of my neck. Really thought I'd just messed up a disc or nerve badly, and my main thought was, dam this is going to mess up my ski trip. Little did I know..... For me the anniversary reflections are somewhat cathartic, a chance to vent & reflect. This is the one place I feel I can do this and know that many will share similar experiences and feelings. I have deliberately kept to a minimum that kind of discussion with friends, no one needs an illness bore, and we are in this for the long haul. I reflect that five years ago I had a job that I loved (well 90% of it!), life was good, and we were starting to feel financially a little happier. Now I have had to step back from work completely. That is a life that is behind me, and I do mourn that. I have tried some different volunteering, but even short sessions once a week are too fatiguing. I think the worst thing for me now is the boredom. I was a doer, forever busy, work, exercise, music, travel. Now as many of us have to I have to pace myself, I have my afternoon nap, life is at a different pace. Work provided a purpose for me, a focus to life that I like Targets, things to strive for an achieve. Now it is gone, I miss that "reason to get up". I know this is the one thing I really need to work on, for the sake of my mental health. (any suggestion for non-fatiguing inducing activities grateful received!). I can't listen to music, gigs are a complete no, and I think I frustrate the most by the things I can't avoid. The support one needs to give to family you can't not give. Those times when others need your support, that really highlights for me all my limitations. This is when I do myself the most harm in terms of fatigue, one day I will learn! I know I am lucky, it could have been so so much worse that day five years ago. I have never felt why me, it has always been why well not me? Just dumb luck, nature, the way I was born, genetics, I don't really care. Now get on with what you have got! And for what I have I am grateful, but the initial optimism of the first few years post SAH has given way to the new routine and some realism. Initially we had no idea what the impact was going to be on my life. The medics gave me no more advice than don't go for a run for the first couple of months, after that do as you please. Running is something I don't do now. We all have such different roads of recovery and I know compared to some I am a lucky lucky man in so many ways. I think I do accept where I am, I just need to learn to be happier in that place. Thank you to anyone who has read this far and indulged me in these reflections. As I said this is a cathartic process for me, and in the writing down and sharing of this all, it helps, so thank you. I hope you are all well, and happy. All the best for the new decade, onwards and upwards! Greg. Link to comment Share on other sites More sharing options...
Skippy Posted January 20, 2020 Share Posted January 20, 2020 Good evening Greg I'm glad that you know and feel that you can still pour it all out on here - it is cathartic and it does help a great deal. The only advice I can give is to take it a step at a time. Don't try to do everything all at once. You say you can't listen to music anymore - is this when you're fatigued or in general. Try to order things to see if one thing has an affect on another. That is to say, don't try to listen to music after a particularly hard or long day. Listen to music when relaxing, laying or sitting down. When volunteering - where is it and for how long at a time? Is there a quieter place you can volunteer for shorter lengths of time? If so, try them and build slowly to longer periods in busier environments. Doing too much too soon and all at once will give you sensory and physical overload. Take tiny steps - the journey may be longer but the destination is still the same. At the same time, please do not feel guilty for not being able to do all the things you want to do all at once. One thing at a time - old cliches - Rome wasn't built in a day; build a wall one brick at a time etc. Steady pace and rest when needed - and make sure you're getting enough fluids - even at this stage in your recovery! I'm 14 years in this year and I certainly know about it if I've not had enough water. All the best and take care of you,otherwise you can't take of anyone else xx Link to comment Share on other sites More sharing options...
Greg 21.01.15 Posted January 20, 2020 Author Share Posted January 20, 2020 Thanks your advice is much appreciated. All very wise words indeed! Have managed to get my head around the idea of doing things in small more bite size pieces for something. For many of the jobs around the house, its a tactic I use a lot. For others likely driving, travelling etc. I can't seem to work a compromise so easily. The volunteering is slightly frustrating one for me. I have been successful ish with doing an hour a week at an after school science club. But that's been rather too intermittent in frequency, and not quite as I hoped. However, I have managed that quite well, the numbers of pupils is quite small and they are all interested good students. I tried volunteering 2.5 hours a week at a National Trust farm near me, but combined with the drive to get there it was too much. I suffer slightly in that though not rural we aren't in a big town, bus service is poor and my ability to drive more than a rather local ish distance once or twice a week is something I manage quite carefully for obvious reasons. So though I've got a few other ideas up my sleeve, for now I'm leaving them be, but I will revisit. Probably need to reenergise some of my ideas in this area. Water yep, drink pints of it! With you 100% Yes you're right, small steps, maybe a longer journey but still getting to the same place, just have to work on my patience.......... Many thanks again, all the best Greg. Link to comment Share on other sites More sharing options...
Greg 21.01.15 Posted January 21, 2020 Author Share Posted January 21, 2020 Thanks Casey. How many times have I done that, ploughing ahead regardless and then paying the price later, one day I'll learn! Link to comment Share on other sites More sharing options...
Macca Posted January 21, 2020 Share Posted January 21, 2020 Hi Greg, Nice to see you back. I think you just need to take stock . You're doing great by the sound of it but you have to listen to what your body is telling you. Resting well is as important as functioning well. The 'rest' is your fuel tank, it just empties a bit faster than it used to and so you need to fill up more frequently. Also take things a little slower - remember the story of the tortoise and the hare? It's just common sense and don't forget, you are that little bit older now too, so manage your condition, don't try to beat it! Good luck sir! Macca Link to comment Share on other sites More sharing options...
Greg 21.01.15 Posted January 21, 2020 Author Share Posted January 21, 2020 Thanks Macca, good to hear from you. More wise words indeed. Yep throw the joys of getting older in there too! 😁 Cheers Greg. Link to comment Share on other sites More sharing options...
Daffodil Posted January 21, 2020 Share Posted January 21, 2020 Hey Greg. We all hear and understand you. If I’m honest I really think the five year mark was my worst but also probably the time I accepted and let go a bit more and then in turn this has given me strength to grow in different ways. . At fives years I felt I’d plateaued and was far from happy with the view if I’m honest. Yr 1 was a blur of pain and struggle and bewilderment, yr 2,was to try testing out what was possible..not a lot,yr 3-4 saw la number of regains and small victories , failures too and then five , suddenly progress seemed slower and reality of my new state more ...familiar? And that was a bitter realisation, I wanted so much more.. always been darn impatient.. But then yr six and seven has Seem yet more progress, more true confidence in new ability return. I have stretched myself far more than I ever thought I could but I do iit all very differently to my old version of push push fast fast and now I just March to the beat of my own drum and steer clear of everyone’s circus. As my mum used to say ‘not my monkeys’ Continue to be kind and generous to yourself as you continue to heal, and remember that you are, healing still, keep talking , keep pacing( how I hate that word) . As encouragement Last year I went and did a big concert...Fleetwood mac,, i had promised myself I would do it whatever...and it was crazy but uplifting and amazingly. I danced a little( read swayed) I sang every word( read warbled) and I felt so joyful and alive. I was a wreck getting home, felt Like id been on a vodka bender and the fatigue hangover the next few days felt like that too but it was worth it. Make your fatigue trades well. This is the time I think when possibly peace with our enforced change starts to really settle , it did for me , and then from that steady state you start the real build of what you can, want and are prepared to do. And keep Looking for the unusual solutions, be curious and creative , find different purpose and you’ll increase stamina and most of all gain confidence in the cans and avoid the can nots . Go steady Greg. Keep ploughing at your pace. Link to comment Share on other sites More sharing options...
Greg 21.01.15 Posted January 22, 2020 Author Share Posted January 22, 2020 Hi Daff, Lovely to hear from you. Describing things year by years is a good way of looking at it. Year one for me was definitely, wow what happened there! I really felt I had dodged a bullet, and even to quite late on in year one thought I'd get back to work in some shape or form. It really felt like quite a positive time once the initial shock was out of the way. Year two was attempt at return to work year, which quickly became apparent wasn't going too well at all. I also spent some time that year on a Headway Rehab course, and that time spent with a small number of folks in a similar place to me was hugely positive. I could start to imagine a different life if work didn't pan out as was looking likely. So despite work issues I felt really quite positive. Years three and four were marked by deaths in my close family, and at my new pace, that took a lot of my time up to deal with sorting things out. However, I was starting see patterns within the year that I didn't like. Winter's days such as today, cold, wet and short, which keep me confined really make this time of year drag. And here we are to year five, and you are right, its familiar, not as I had thought life would be but more importantly for me lacking focus. I was always striving for something, studying, working, trying to reach the next goal, level whatever. I find it harder to satisfy that side of me now, as I see my limits too much. And that is something I know I have to work on. It does come down to something you said, acceptance. When I can do that then I can re-start setting myself targets that are appropriate to where I am now in life. Macca was also right, I'm not getting any younger, and as much as I have always fought the notion of ageing just because numerically I am told I am, it has to have a bearing. I was looking at target heart rates for training yesterday, and for my age, its lower than I thought! I'm glad you made it to the gig, nice one! Yes that is huge encouragement. In my daydreams I still consider getting a ticket for one of my old favourites. Just disappearing up to town by myself and just nipping in for 30 mins of the headline act. Just for old times sake! You are right in that we must make the fatigue trades count. Try to focus on doing less at times so that I can really do some of the things we want. I know somethings I will pay for it in fatigue but at least I spent that time with a big smile on my face earning that fatigue! Thank you all (Daff, Macca, Skippy, and Casey) for helpful, sage, kind and encouraging words. Greg. Link to comment Share on other sites More sharing options...
Louise Posted January 22, 2020 Share Posted January 22, 2020 Hi there thanks for sharing your story so-far, I went to college after my SAH and found that a hard struggle and knew then that working life wasn't for me to find the balance for yourself and family I do so hope you find what your seeking defo onward and forward.. Link to comment Share on other sites More sharing options...
Xamder mom Posted February 12, 2020 Share Posted February 12, 2020 I'm so thankful that you posted this. Reading the comments from others is helpful as well because we really are in an exclusive group aren't we? I won't give you any advice but I'll just thank you for posting and when my 3 year anniversary comes up in March I hope I can express my feelings as well. Link to comment Share on other sites More sharing options...
Greg 21.01.15 Posted February 13, 2020 Author Share Posted February 13, 2020 20 hours ago, Xamder mom said: I'm so thankful that you posted this. Reading the comments from others is helpful as well because we really are in an exclusive group aren't we? I won't give you any advice but I'll just thank you for posting and when my 3 year anniversary comes up in March I hope I can express my feelings as well. Thanks, as you are probably finding out this is a great place to come, and share with people that understand where you are coming from. No judgement just kind support. It has been invaluable for the last five year! Link to comment Share on other sites More sharing options...
Gemma B-B Posted February 16, 2020 Share Posted February 16, 2020 Hi Greg, Like you I have not been on here for a long time. I too had my haemorrhage in January 2015 and have just reached the 5 year mark. Was very interested to read your reflections on the matter. Similar to what Daffodil said above, now I am at the five year mark I do feel somewhat like I have plateaued. My first year after the haemorrhage was spent recovering and then in rehab. I started a phased return to work at the start of January 2016 which was the same time I was diagnosed with arachnoiditis and arachnoid cysts on the spine as a result of my haemorrhage. I was fortunate enough to be able to return to work, albeit part time and without the managerial role I did before (I am a teacher). I have also had to adapt to the spinal injury as I am now a wheelchair user as a result of it. Five years on I think I have learnt to manage things quite well. I am still surprised at the toll fatigue takes on everything and wonder if this will ever change at all. Due to my spine injury and hydrocephalus I am still monitored by the hospital I was treated at (have just been moved to yearly check ups from six monthly ones). I think one of the interesting things about being at this point is dealing with the long term acceptance of what life is now like and how different it is to my life before and the life I thought I would lead. It is encouraging to still come on here and see the progress people have made. I wish you all the best with your continued recovery. Gemma Link to comment Share on other sites More sharing options...
ClareM Posted February 16, 2020 Share Posted February 16, 2020 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 Link to comment Share on other sites More sharing options...
Greg 21.01.15 Posted February 16, 2020 Author Share Posted February 16, 2020 3 hours ago, ClareM said: 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. 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, life pre-bleed does seem a long way away, I too can't really remember what it felt like to be able to do what I could then, I know I could do more, but I guess slowly the acceptance of the new life post bleed, becomes the norm. The highs and lows of life are framed within the new context of life post bleed (well most of the time, I still do throw my toys out of the pram at times if I'm honest when things get a bit too frustrating!) You are right, life is short and there are so many things to do, places to go and amazing people to meet, even post bleed there is a whole world out there waiting. Link to comment Share on other sites More sharing options...
Greg 21.01.15 Posted February 16, 2020 Author Share Posted February 16, 2020 6 hours ago, Gemma B-B said: Five years on I think I have learnt to manage things quite well. I am still surprised at the toll fatigue takes on everything and wonder if this will ever change at all. Due to my spine injury and hydrocephalus I am still monitored by the hospital I was treated at (have just been moved to yearly check ups from six monthly ones). I think one of the interesting things about being at this point is dealing with the long term acceptance of what life is now like and how different it is to my life before and the life I thought I would lead. It is encouraging to still come on here and see the progress people have made. I wish you all the best with your continued recovery. Gemma, lovely to hear from you, nice to know I'm not the only intermittent visitor here! Fatigue, and whether it is improving is something I do wonder about quite a bit. I try to reflect to the anniversary points and think have things changed? I think the progress is so gradual that it is hard to judge within oneself if things are getting better. My brother in law had an Ischemic stroke, about 12 years ago now, and the last time we spoke about this he felt that his fatigue had albeit gradually still improved over all those years. I know its slightly different but I do take some hope from that. Also I think its not just about things improving in terms of physically getting better, I think (hope!) that I learn to live with it better, so that I avoid some of the worst of the ups and downs. Or as we discussed above, if I do over do it, I make sure that its worth the fatigue! To me at times I'd rather have one good day where I make the most of whatever, and I flank that event with a number of quiet days either side. I appreciate its not good to yoyo like that all the time, but just sometimes, its nice to "let rip" just a little! Take care, lovely to hear from you. Link to comment Share on other sites More sharing options...
Daffodil Posted February 16, 2020 Share Posted February 16, 2020 Clare, Greg, Gemma. If it’s any help I think it does continue to get better, or maybe we just become better at adapting . Either is good though and both is progress. I’ll be 8 yrs next month and my stamina is still increasing but I’ve had to find new ways of doing things for instance like the ways I now keep fit and healthy sit better with new me than it would my old style. So for instance I loved swimming Ipre SAH but just really didn’t work for me anymore , exhausts me too fast so Instead I walk daily and do gentle strength exercises instead which I think has really helped my balance with the hydrocephalus but also dramatically increased confidence in what I Am still capable of. So much so I stretched my comfort zone and learnt a new sport.not too high cardio, adding water based which I love but not high impact and now I can paddle board. This was unthinkable in the years immediately post and yes completely exhausts me , and I wobble and fall too but the trade off of endorphins and pride I get when I do it means it is worth it, new rules are in play, my evolution. Same for my work. I really Built it up slow, had to say goodby to a fair few ambitions but found a new niche and again that’s helped me confidence wise. Hardest balance for me fatigue wise has always been the giving of my energy to my family. Never wanted to limit that but brain had different plan. Girls were 8+6 when I had my event and then mummy they knew changed in a blink. It’s been a slow crawl of knowing what’s possible since then, failing and falling a lot, but I for the most can do so much of it again but honestly think maybe a bit better with boundaries and setting expectations of what I can do and our relationship I think is all the stronger for it. Aim at steady is my best advice, yes may be boring but my view is that from a steady state then you can dare to lean a bit more, reach a bit more and generally wobble a bit. When everything’s wobbly then you know it’s time to reign in and regain the steady and then off you can go again. Daring to dream and always keep hope of what’s possible today. And on the days when nothings really on, the head stops play, then being kind to self and gentle to then totally rest and apply self care and attention (and yes I do still have those days but they are fewer and less frequent. ) I got scared a lot i think , I didn’t want to go back too much as the steps backwards early on frankly floored and terrified me...but now I just try and stick with what I know is possible today. I measure from my SAH yes but try not to think of that state too much and instead just be curious of now. You have all done amazingly, overcome so much pain, so much challenge and change with dignity (and probably some tears and anger too) , keep building just as you are. Onwards and perpetual motion .you've got this x i wish you all well. Link to comment Share on other sites More sharing options...
Greg 21.01.15 Posted February 19, 2020 Author Share Posted February 19, 2020 On 16/02/2020 at 23:07, Daffodil said: I’ll be 8 yrs next month and my stamina is still increasing but I’ve had to find new ways of doing things for instance like the ways I now keep fit and healthy sit better with new me than it would my old style. So for instance I loved swimming Ipre SAH but just really didn’t work for me anymore , exhausts me too fast so Instead I walk daily and do gentle strength exercises instead which I think has really helped my balance with the hydrocephalus but also dramatically increased confidence in what I Am still capable of. Daff, Thanks for your words and thoughts. Interesting to hear what you said about the swimming. Fitness was a big thing for me pre SAH, though I never was a good enough swimmer to train hard, but I thought it might be good for me now. Boy I was wrong, I did a short 20 minute session, felt lousy for a couple of days afterwards. Not really sure what triggered the fatigue so badly, as in terms of cardio load I had taken it easy compared to other exercise I was doing. Ticked as tried and moved on. I have found the same, walking is the one thing I can do to a reasonable level, and try to walk a few miles at least if not more each day. Its a good replacement for driving short distances, which now have a big impact on my head, so I walk, save the planet and stay a bit more healthy! Well done with the paddle boarding it always looks good fun, and relatively peaceful! I can't imagine what it must have been like to go through all that you did and have two under 10's looking up to you and wondering what was going on. I hope they are doing well now, and are rightfully proud of what their Mum has achieved. Finding one's niche now is something I still am struggling with. I know that I can't amble along as I have been, I need more focus. I have something up my sleeve, in the planning which I'll share if it comes good. It would draw on my experience as brain injury survivor, so fingers crossed! Yes, keep dreaming, never stop, wise wise words. Within reason all things are possible, may be not the way we might have done them pre-SAH, but with a bit of flexible thinking and a touch of compromise, much is possible! Onwards and upwards! Take care all, as always my spirits are lifted talking to you all. Thank you Greg. Link to comment Share on other sites More sharing options...
Chris G Posted February 19, 2020 Share Posted February 19, 2020 Happy five year Greg. I hope you continue to improve. Chris Link to comment Share on other sites More sharing options...
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