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Another fit and healthy person having a NASAH


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Hi NASAH people,

In the words of the song, please allow me to introduce myself. I'm a 54 year old otherwise fit and healthy and not overweight female. My NASAH was nine months ago to the day on 16 Dec 2011. Was feeling fine, having lunch with a friend at work and then suddenly became aware of two successive electric shock like sensations in my neck. Then nothing - for half an hour or so. Back at my desk I was suddenly conscious of excruciating pain and the rest is pretty hazy until I recovered consciousness properly in the high dependency unit in the neurological ward in King's College Hospital South London about 30 hours later. I had had a Fisher Grade 2 perimesencephalic NASAH as disclosed by a CT scan and a lumbar puncture as I had early hydrocephalus and was apparently very confused (that figures, as I can't remember anything except screaming when I had the lumber puncture, but it seemed like someone else was screaming i.e. I was so out of it that I didn't fully register the pain). This seemed to do the trick as I remember snapping back into consciousness, and thank the gods I felt pretty well OK straight away although I was kept on drugs and a drip for a few days and had an angio which disclosed nothing. As it was just before Xmas and despite feeling OK I was not too happy going home alone (no kids, no partner, no siblings, mother in a care home, few friends, basically a sad loner) I was transferred to a stroke unit in St Thomas's Hospital to free up the bed. That was seriously depressing and I got out as soon as I could when a full complement of staff returned after Xmas and the occupational therapist pronounced me fit to make myself a cup of tea.

I had another angio a week or so after discharge and again nothing showed up. I had an MRI scan three weeks after that - again nothing. I was off work for six weeks in all and then returned on a short working day/phased return basis in February for a month before going back to full time work in March.

How do I feel? Pretty well OK. As with many others who have posted, the medical information was pretty well zilch and after my modest researches online I felt I knew more than my GP. I insisted on an appointment with a consultant and got one eventually but that really did not tell me anything much either other than that the risk of recurrence was pretty well back to the risk for the general population which is I believe one in 100,000. I have signed up to an eight week set of sessions on brain injury run by King's College Hospital with the charity Headway just to get some more information but don't think I will bother with a parallel set of sessions on coping with brain injury because I think I am coping reasonably well and don't have any obvious deficiencies or problems fingers crossed.

Of course I feel angry, upset and anxious about all this. But to be honest, I have always felt that bad things could jump at you out of nowhere so I don't feel I have been unduly picked on by the evil powers of the universe. I have always had a pretty downbeat view of life as I say so I have not felt more depressed than I ever did. Good friends, better people than me, have been killed climbing or died of untimely deaths from cancer for example so yes, **** happens. If it is said I am unlucky that the roulette wheel pointed at me, it can equally be said that I am lucky to have got away without much apparent ill-effect. I am a pretty determined individual and one thing I do remember when the NASAH hit is trying to get up onto my feet (I had collapsed on the floor) saying that I was very resilient. And one of my previous and long abiding images of myself was as someone who would, if hit on the head with a hammer, crawl along and keep crawling if needed rather than give in; somewhat prescient as it turned out. So I would say to everyone, never give up and never give in and keep on trying to find out why this has happened while at the same time moving on and doing as much as you can with the rest of your lives. And if you can reduce vascular risk factors, do - my cholesterol levels are quite high but I'll be damned if I will take statins (I don't do drugs of any sort). So I guess it is time for that healthier diet and trying to reduce stress as I understand that stress can raise cholesterol levels as well as dietary factors. I might also explore some types of alternative therapy as well such as perhaps osteopathy as I do get some funny clicking sounds in my neck sometimes now. I take as much exercise as I have time to. Can't say I have had a fundamental re-think of my life - or rather I have been trying to do that for about thirty years, so nothing new there. Maybe time to do more of what I really like i.e. non fiction research and writing and travel. If nothing else, the NASAH brings it home to you that life is short and the big sleep is long.

I hope everyone reading this (and everyone else on the forum indeed) manages to get through what is a pretty horrible experience on any analysis with the minimum of pain and worry, that your recoveries progress well and that you manage to get at least some of the support and help you need. Demand it!

I'm not really an internet junkie; I have been reading posts on this forum from time to time since I discovered it some months back and it is by far the best source both of first person accounts and of detailed information about all aspects of SAHs which I've found. So keep up the good work! I thought I would post just in case my experience is of interest to anyone else, particularly anyone who has had a NASAH recently and wonders what the hell is going on. I have no idea, but you just have to keep going and not let this take over your life.

Very best wishes to everyone.

Phinella

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Hi and welcome,

I'm so glad you're coming along so well! I too won't take any drugs, so I listen to my body's quiet and sometimes very gong-like sounds (NASAH), and go with it. Before the SAH, I used to work-out all the time, now I've found yoga and meditation are where it's really at for me. I really didn't do much of that before...just from listening. I was like you a crawler too...now I'm learning that my personal message in SAH was 'Slow down and don't fight so much.'

Keep reading and posting when you like. I find that everyone benefits from multiple the struggles/stories of others in the same boat.

~Kris

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Many thanks for your replies. I must say, Kris, that I have found your posts generally very enlightening both in terms of scientific content and of wise observations and I really hope your own recovery continues to progress and that you find a way of living and being that is as good and rewarding and symptom-free as as it can be. The idea of the body's gong-like sounds is interesting. I have always been into spiritual development in a sort of a way - not regular meditation though have dabbled since age 21 but get too impatient or distracted to persist. Maybe I should take it up properly. I have thought that it would be good to get the insights of a good alternative healing practitioner into the causes of NASAHs but it would be too much to expect answers when the conventional medical world shrugs its shoulders. I did get some plant extracts from a herbalist which at least had no side effects!

Anyway I think my NASAH had multiple causes - possibly some weakness in neck veins which had built up over years, cholesterol levels on the high side quite possibly due to stress as much as diet if not more so, stress due to unhappiness in life, cruel hours at work, lack of sleep, stress due to having had to put my mother into a care home and sell her flat without any help from a single soul (over the year before the NASAH happened), menopause (maybe - I think there may be a link with reducing hormone levels - one good thing is that I really do not give a damn how bad the symptoms may be as long as I don't have another brain bleed). Finally, throw in some bad karma of the sort we all build up if you believe in such things and perhaps some badly aspected planets and a malicious demigod or two saying "OK let's mess with this woman today" and away you go (I am being deliberately fanciful in raising these last possibilities, but who knows). Interesting too that a majority of the people posting on the forum are women - I read somewhere that there is a preponderance of women amongst people who have had SAHs and middle age say 45 plus seems to be the most dangerous time. Though there are younger people affected too obviously, and whatever your personal characteristics, it's a tough challenge.

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Hi & Welcome Phinella,

I am glad you are doing so well. It is such a stange common theme in here - we all broke our heads and no one tells us anything to do to help ourselves!

I am middle age as well! But I do take drugs~ I have really found I was sad at my 1 year mark but the past week I feel I am in an up swing again. I was afraid after a year I was doomed to sleep 14 hours a day the rest of my life.

Continue good luck, maryb

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  • 3 weeks later...

Kind of a funky club to belong to, but welcome! I had mine in January and am now almost nine months out. No known cause for mine as I have/had no risk factors outside of that pesky XX chromosome!

I am on medication for headaches. I wouldn't be able to function without them, and even with them I still get at least one excruciating headache per week. As with others...very little information in the hospital, found most of it myself, great resources here.

Prior to my SAH I was a marathon runner, personal trainer, teacher and mostly healthy eater. I'm still all those things, although I've yet to run a marathon (I have one this weekend, though...we shall see)! I'm back to most of my previous levels of activity and just have to listen to my head and slow down every now and again. Most other symptoms are gone except ringing in the ear, which mainly is there the worse my head is.

Very blessed to have had this happen and made it through it pretty well off. Others are not so blessed. If I forget to be blessed, the headaches remind me by smacking me upside the back of my head and shouting "Be blessed, darn it!" :devil:

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  • 3 weeks later...

Hi Teechur,

I hope your marathon went well - that sounds a fantastic achievement. Hope your headaches get progressively better and that your recovery continues to proceed well in every way.

Just thought two things. First, an SAH is a teaching. It is an important teaching but I don't know what it means other than that it could take the rest of one's life to puzzle out and that paradoxically like all life's challenges we have somehow chosen to receive it. That sounds irrational and unscientific but I do think there is karma to be worked out and this is one way of doing it. Just hope we don't get any further bad karma in consequence as not necessarily going to bring out the best in people! Second, we have to look forward not back. Bad things happen all the time - karma, a bad universe, who knows, and there is a box in the ground for all of us humans in the not too distant future (years rush by like mountain streams so a lifetime is soon over however long it is). Maybe just best keep a wary eye on everything and see behind appearances. But we have got to run our marathons, climb our hills and face the fates. Never give up and never give in. On life, on death, cast a cold eye; horseman, pass by (WB Yeats' epitaph).

Best wishes to one and all and apologies for some rather "B" movie standard musings.

Phinella

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  • 2 weeks later...

Yes, saw you had made the half marathon from another post, Teechur. I'm sure you'll make a full marathon soon - sooner than me at least. A half is not a bad achievement by any standards; the most I've ever done though I do have aspirations.......But you'll get there first and much faster!

Best wishes to all,

Phinella

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Yes, saw you had made the half marathon from another post, Teechur. I'm sure you'll make a full marathon soon - sooner than me at least. A half is not a bad achievement by any standards; the most I've ever done though I do have aspirations.......But you'll get there first and much faster!

Best wishes to all,

Phinella

When you're ready, let me know! I coach people to marathons and I can give you the brain explosion discount!

I just registered for a full marathon on Dec 15. That gives me one month to get ready and I'm close to being there. :)

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  • 3 weeks later...
  • 1 month later...

Well I have yet to do a full marathon. However, over New Years I did two half marathons; one on the last day of the year and one on the first day of the year. I am registered for a 50k next weekend, but not sure I'm ready for that. I continue to suffer from horrible headaches. Today, for example, I planned a long run of 15-18 miles, but my head is bad so I spent the day in bed instead hoping to rest up enough to deal with it during work next week.

I suspect it'll be a 25k next weekend, but then two weeks later I'll run a full marathon.

I will get there! I am back teaching bootcamps two days a week, and running classes on Saturdays.

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Phinella,

I was in Kings also, so look at this way ..You could have been in there when I was in there. oh no no you say..lol

My sisters used to come and sing with me, to get me well again. lol

It worked as I cannot remember July 2009 til Sept 2010. I slept most of that year.

Once shunt was fitted nurse said I sang to her, glad I do not remember the worst part ie ventriculitus and

sepsis, my body just shut down. Must have been my singing lol

Cannot walk that far but I am so glad to see my Family again xx and we still sing

Best wishes

WinB143 xx

Edited by Winb143
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Hi Teechur and Win,

Two half marathons back to back is really something, Teechur. I am sorry you are still having bad headaches and that that is impeding your ambitions but sounds like you are really achieving a lot and I am sure you will achieve more and more personally as well as professionally. 50 k - wow - sounds mega long. I am running a bit though not enough due to time pressures and feel as good as I ever did apart from tiredness late at night. But I was getting tired in the evening before the NASAH hit so may be just middle age. I grump and groan about my tough job and having to sort out a care home for my mother etc but I am pretty lucky I know - indeed very lucky. And I could quit the job any time - I wouldn't starve.

We'll see what happens this year......time to be bold when thoughts are clarified or even if they are not.

No, I wasn't in King's at the same time as you, Win. I was there in Dec 2011. They know their stuff I think - at least I was quite impressed.

Best wishes and hope all goes as well as it can do for everyone - the night is darkest before the dawn as they say.

Phinella

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Many thanks for your replies. I must say, Kris, that I have found your posts generally very enlightening both in terms of scientific content and of wise observations and I really hope your own recovery continues to progress and that you find a way of living and being that is as good and rewarding and symptom-free as as it can be. The idea of the body's gong-like sounds is interesting. I have always been into spiritual development in a sort of a way - not regular meditation though have dabbled since age 21 but get too impatient or distracted to persist. Maybe I should take it up properly. I have thought that it would be good to get the insights of a good alternative healing practitioner into the causes of NASAHs but it would be too much to expect answers when the conventional medical world shrugs its shoulders. I did get some plant extracts from a herbalist which at least had no side effects!

Anyway I think my NASAH had multiple causes - possibly some weakness in neck veins which had built up over years, cholesterol levels on the high side quite possibly due to stress as much as diet if not more so, stress due to unhappiness in life, cruel hours at work, lack of sleep, stress due to having had to put my mother into a care home and sell her flat without any help from a single soul (over the year before the NASAH happened), menopause (maybe - I think there may be a link with reducing hormone levels - one good thing is that I really do not give a damn how bad the symptoms may be as long as I don't have another brain bleed). Finally, throw in some bad karma of the sort we all build up if you believe in such things and perhaps some badly aspected planets and a malicious demigod or two saying "OK let's mess with this woman today" and away you go (I am being deliberately fanciful in raising these last possibilities, but who knows). Interesting too that a majority of the people posting on the forum are women - I read somewhere that there is a preponderance of women amongst people who have had SAHs and middle age say 45 plus seems to be the most dangerous time. Though there are younger people affected too obviously, and whatever your personal characteristics, it's a tough challenge.

Hi Phinella,my neurologist also told me that the majority of people that get this brain bleed are women i am a man and i am 51 years old worked out religously and i am speculating or hypothesizing that perhaps we are very deep thinkers and lack of sleep combined with stress and the ability to not just let things go lead up to this type of brain bleed i am not a doctor but an anylitical person with bad spelling.lol.i went thru a realy bad divorce and almost lost my house over it.but looking back i see how i was so consummed by my own thoughts let me share this with you the whole time i laid in the hospital bed in the intensive care unit i thought about my daughter and when ever i started to think about all the sad or woe is me thoughts i said to my self why do i care i only care about taking care of my daughter thats it the rest like mary b said people that love dramma and are real downers people that want to bring you down i ignore i whole heartedly believe in destiny now and play my part without any over thinking letting our powerfull minds rest i believe is the fundamental strenth we need to give back to our brains.i have become much more ballanced human being and i feel alot better.so nice to share that with you.dan

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Hi Phinella,my neurologist also told me that the majority of people that get this brain bleed are women i am a man and i am 51 years old worked out religously and i am speculating or hypothesizing that perhaps we are very deep thinkers and lack of sleep combined with stress and the ability to not just let things go lead up to this type of brain bleed i am not a doctor but an anylitical person with bad spelling.lol.i went thru a realy bad divorce and almost lost my house over it.but looking back i see how i was so consummed by my own thoughts let me share this with you the whole time i laid in the hospital bed in the intensive care unit i thought about my daughter and when ever i started to think about all the sad or woe is me thoughts i said to my self why do i care i only care about taking care of my daughter thats it the rest like mary b said people that love dramma and are real downers people that want to bring you down i ignore i whole heartedly believe in destiny now and play my part without any over thinking letting our powerfull minds rest i believe is the fundamental strenth we need to give back to our brains.i have become much more ballanced human being and i feel alot better.so nice to share that with you.dan

There is something so clarifying about a serious health issue. I had my first one in 2003 when they found a pre-cancerous tumor in my pancreas on a wonderful fluke of luck (if you can call kidney boulders a fluke of luck). I spent all of 2003 dealing with that. As I was recovering after three surgeries, including a Whipple Procedure, my district went out on strike. Having been very close to knocking on heaven's door, though, I felt so free. I didn't worry, even though my husband and I worked the same district and we had no income and not a whole lot of savings. All that stuff didn't matter. I was alive. I had survived a failed enucleation, a Whipple (look it up if you're interested, it's called the Grandaddy of all Surgeries), a blocked bowel, and internal bleeding that took me right up to the door mat. That's all I cared about! I was alive with my husband and my dogs and my friends! The things I used to worry about were gone. Well THEY weren't gone, but I felt like if God could see my way out of that, he'd help us deal with the "longest teacher's strike in Washington state history", bills, etc.

When this happened I really struggled to understand why. I still don't. I feel like my lesson back then was "Life is for living, don't miss a moment." It encouraged me to keep my body healthy (I had lost 100 pounds and hit goal literally 3 days before I found out about the tumor), to stay active, to not wait for but create memories. But the SAH, I'm still not sure about. I know it will come clear someday; maybe I'll help someone through something. Who knows? Maybe there is no lesson...but I think there is.

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  • 2 weeks later...

Hello all,

I am a newbie 42yo male and recently suffered a SAH while working out doing burpees in my home gym. It has only been a month now. I am an avid competitive endurance athlete. I was averaging 60 to 100 miles of running and mountain biking a week as well as 12 or more hour adventure races, etc. I am so grateful to be alive and I am improving. But I am very worried about what is to come and what I will be able to do when all is said and done. And although I know the general prognosis seems very good, how many people that this happens to are highly physically active beforehand, and are we at greater risk if we try to resume our lifestyle, ya know?

Anyway, I would appreciate anyone's input on advice they have been given resuming activities, exercise, and just what to expect in general. I am right at one month out,....and doing relatively well....as long as I keep my butt planted on the sofa :( Again, I am so thankful to be alive, so don't want to have a pity party. Just never been very good at sitting still and curious of if and when I'll be able to push back!!!

My prayers to all of you that have suffered this and worse!!!!

Thanks,

Wade

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Hi Wade

Welcome to the BTG site. Your story has some remarkable similarities to my own (see the introducing yourself thread for my background). Like you sport is and always has been a big part of my life. In more recent times I have been doing the things that are less taxing on my body - like swimming and cycling. Also like you my brain explosion happened while exercising in my shed (which has some gym equipment in it). I often use the shed around winter time because of the weather and darkness (we live on a farm so no artificial lights on the roads around us).

My training routine included swimming up to 35km per week in the ocean plus cycling and running up and down flights of 200 steps - very much a no pain no gain type of routine. At the time this was in preparation for a 20 km ocean swim which I did not long before my brain event that happened 9 months ago.

I was given an excellent prognosis for a full recovery which was predicted to be in 6 to 12 months. As a rough estimate I am about 25 to 50% back to where I was and because I wasn't getting better as quickly as the prediction indicated I went searching for some clues on the Internet and found this site - which has been great for getting some insights from people who really know what it is like.

The answer to your question about how much exercise to do was, in my case, as much as you want. I do wonder about the risk of another blow out but the neurosurgeon laughed at me when I asked saying that I would have already blown everything that was going to blow. I hope he is right. As for the recovery time, you may have seen already from posts on this site that it is an individual thing and that predictions for recovery time should not be relied on too much. Some people seem to get better really quickly and suddenly while others take longer.

I don't know if this information is of any use to you but on the off chance that it is I thought I would post anyway.

Things could have been much worse for me so I am very grateful for how it has turned out. However it is a real challenge to deal with the dramatic effect that such a little bleed can have on ones life.

Best wishes

TonyH

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With regard to the discussions on why fit people tend to get these bleeds... Myself, I had my NASAH two weeks after a good bang to the head during a skiing wipeout. Would my brain have bled without this small injury? We will never know. The hit wasn't all that big of a deal and I was wearing a helmet. It was more of a slight whiplash. The neurologist said the ski accident had nothing to do with my bleed, nor did my cancer surgery the following day. It just is...

As to my recovery, although my damage was to the sensory area of my brain (R parietal lobe), most symptoms resolved by the 7th week and I reported this to my neuro on my follow up visit. I then had the go ahead to resume any and all activities, the only caveat being strenuous weight lifting, which I don't do anyhow. I starting off walking, then proceeded to golf, gym activities, biking and a bit of running. This fall I returned to curling and took out my seasons pass for winter downhill skiing.

I am 13 months out and feel no different than before SAH. A little change in my hearing, but very minimal. I know the odds were not in my favour to make this type of recovery, but I did and I count my blessings. I hope only to offer encouragement to others and I realize each person's healing journey is unique.

With positive thoughts to those still working hard to recover.

Sue

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To those who ask why and how and what...that's me too.

I have also come to realize that I did this way too much in my life. I enjoy meditating by just quieting my mind into the great unknown and just feeling or dreaming. I never did this before SAH, but now it really helps me to keep that perspective through my recovery and just flow with it. Sometimes I feel perfectly normal and other times, if I try and exercise or exert myself in any way, I'm doomed to failure. I go at my bodies own schedule instead now even if I've paid $$ for something exciting...sometimes, I just can't do it.

~Kris

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  • 2 weeks later...

Thank you all so much for responding. I, like many that I have read about here, have really had to research my problem, as my primary care physician and even general neurologist were relatively unfamiliar with PNSAH. I have read virtually every article and book that I could get my hands on. I only learned of one individual that apparently suffered this a second time. Ironically and unfortunately, he too, was a triathlete so...??? It makes you wander, is there no to little recurrance because people change or limit their lifestyles? Or does the venous system truly scar and repair itself better than the original defect so that there is virtually no chance to happen again??? Would be nice to know how much we can resume our previous lifestyles physically? I love it but not enough to die a young man for it ;) I did get to review the CT, CTA, and cerebral 3D angiogram and all were definatively free of aneurysm or other defect except perimesencephalic blood in the SA.

Anyway, for now I am still not even 2 months out so I can't really even try to force anything or I get an immediate dizzying headache. I have tried a very controlled form of Yoga, stretching, and isometrics while wearing a heartrate monitor and keeping my pulse below 100. Its not much but sitting without exercise really doesn't agree with me, it torques my back and my body just doesn't like it! Unfortunately, I can't really go for walks either....I'm fine at work moving from chair to chair but if I really try to get into a long stride: ....headache! But getting slowly better I think.

It really helps to hear about other's experiences that have been through this. I am grateful for your responses. Best wishes to all of you and my prayers for you!!!!

Wade

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Hi Wade

It is good to see your post as I was concerned that you may have been spooked by the stories of our experiences. One important thing that I have learnt on this site is that everyone's journey is different and changes for the better can happen quickly. This has not been my experience as yet but I am hopeful. It appears from your post that you are back at work which is very encouraging in itself given how recently your bleed happened.

Best wishes

Tony

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  • 4 weeks later...

Well, I have been warned off tellling someone to stay off ciggies, chocolates and anti Ds already (grovel grovel so sorry) because I am not medically qualified. Goodness me a little balance and sense of perspective would be appreciated. Exhortations to keep on killing yourselves with baccy and sweets are better? Anti Ds - OK maybe some people need them and big pharma loves them so I will button my lip. But I digress and will probably be thrown out for being a menace to the NASAH community anyway.

But seriously shipmates, I do feel the need to make a few comments to Danny and Wade about exercise, having started this thread. Take no heed of course as I must not provide advice! But I think (insert appropriate disclaimers) you should take as much exercise as feels right. I think people are more likely to under rather than over exercise. I run (very slowly) same as before the NASAH fifteen months ago, go to the gym for general workouts, ski, hill-walk, climb at altitude, go for long distance walks and generally do whatever the hell I want and feel as good (or as bad) as I ever did. If you don't feel up to your old regime it seems sensible to try something different or less strenuous but better to do anything rather than nothing I would think as long as it does not lay you low completely. If you do feel unduly tired or lacking stamina when or after engaging in exercise, again reason would indicate that it is best to wait until energy levels and general well-being improves and then gradually to build up to more strenuous activities if everything goes well. Simply persevering at whatever seems an appropriately achievable level has surely got to be worthwhile and likely to contribute to as full and early a recovery as possible.

Very best wishes

Phinella

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Hi Wade,

There is some incredibly helpful, non judgemental advice on BTG from 'Teechur' & 'Oceanside Gal' who also has PM/NA SAH & have returned in full/part to their original exercise routines.

Give it time for the bleed you can see on the tests to be reabsorbed & you can go back to what you know :biggrin: For now, if it causes pain & pro-longed fatigue, you should listen to what your body is telling you. It won't be forever, you will build up your stamina as & when you are able to.

Good luck & please let us all know how it goes for you :biggrin:

Michelle

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