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Janet's Story


Hello All! My story began 2 months ago, when I woke one morning feeling very dizzy. I interupted my busy schedule to visit the doctor and was given medication for vertigo. A few days later (still feeling dizzy) I helped my sister move my 93 year old mother into an Assisted Living Facility nearby. Yes, I was literally moving heavy furniture! I was extremely stressed over this move for my mother and agonized over whether this was best for her since she had experienced 3 years of depression due to the isolation of living alone (it was!). 


Two days later, when I awoke, the dizziness and nausea was so intense that I couldn't even get out of bed. My family had gone out for the day to move my daughter into college (another stressful event for me!). As I sat in bed alone, I thought that surely I could cure myself of the vertigo. I found some helpful videos online that gave exercises that could "cure" a person of vertigo. As I rolled around on the floor, the nausea overpowered me. It was all I could do to crawl into the bathroom. When my husband came home, he insisted on taking me to the hospital. Thank goodness he did! 


After a CT scan, I was sent to see a neurosurgeon, who told me that I had a "small" brain bleed. When I asked if it was still bleeding, he said, "Oh no! If it were, we wouldn't be having this conversation!". Scary, indeed! I had an MRI and angiogram. He said that it was like a bruise on my brain and I would continue to have dizziness until the blood reabsorbed into my body.


The nurse said that she would bring me a stroke folder with information. My naive reaction was, "Why on earth do I need that? I had a brain bleed, not a stroke." She had the pleasant task of explaining that what I had experienced was, indeed, a stroke. I confess that I'm still having a hard time with that one! I thought that it was a simple matter of taking it easy for a week or two.


Here I am, 2 months later, still experiencing constant dizziness (although much less than before!) and now I have stroke fatigue. Most days I hit a wall doing a fraction of the activities I had done before. The good news is that a recent CT scan shows that most of the blood has been reabsorbed. 


Here are my questions:

1. For goodness sake, how long does this recovery take? As many of you have mentioned, I appear "normal" to people who don't know me. For those who do (including myself), I don't have any energy. I've been told that the light is gone from my eyes and I appear and feel very unenergetic. I want to return to my busy life, but my body says no!


2. Should I quit my part-time job? I have a wonderful job where I work for a non-profit 3 days a week. I took off the entire month of February and am working only 1 day a week this month. Yesterday I worked an 8 hour day and was totally exhausted! My family fears that I am pushing myself too hard. Fortunately, I don't have to work, but I love what I do. I don't love laying in bed- but that seems to be what my body wants me to do. Am I risking another stroke if I work to exhaustion? 


3. What is up with this stroke exhaustion? Every day I feel like I hit a wall. I tell people that I used to do that, that, that , that and that. Now I just do that. If I do anything else, I hit the wall and have to climb into bed for a while to rest. I think that a major part of what defines me is that I live life to the fullest, and enjoy being active. Now I can't.


4. My main question is, what caused this? The strange thing is, I had no headaches, hits on the head, etc. The one odd thing is that I had the "worst headache of my life" six months prior. I went to the hospital, had a CT scan and it showed nothing. I can't help but wonder if the two events were related. 


Thanks for taking the time to read this. I have so much to be grateful for, and yet I can't help but wish I could have my energy back!

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Welcome to BTG Janet glad you have found us. I have replied to you re work in another thread you posted in so won’t repeat myself. 


You are very very early days in your recovery and should take a step back and reevaluate   I too was a very busy person who was always on the go working long hours in a stressful job. 


What this his event has taught me is that I now have to slow up. I still do lots and my physical activity is probably more than pre bleed. But it the mental side that still gets me 3 years later.


I’ve just been on a weeks skiing holiday and suffered minimal fatigue. Back home and at work for 2 days and I’m suffering again. It’s because of the concentration needed to do my job, so I’m glad for my mid week day off.  


You hopefully will will get more energy back. I remember at 2 months I struggled to walk far or do anything that required concentration for any period. 


Be kind to yourself and slow up - you will get there in time. 


Feel  free to ask any questions. 


Clare xx

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Hi Janet,


Welcome to BTG.  I hope I can give you some answers here but no miracle cures unfortunately!


Firstly, two months out from a bleed is next to no time. Please don't underestimate what you have been through. It was a very serious event that happened to you.  Yes, a bleed such as you describe is classed as a form of stroke and its classic sign is the thunderclap headache.  Very often you won't have the classic stroke signs advertised in the NHS FAST adverts ie Face drooping on one side, Arms, can you lift them, Speech, is it slurred and Time - get you to the hospital asap.  Sadly, they don't say H - headache of the thunderclap variety, get to hospital, bluelighted!


In my opinion, they should because it is every bit as dangerous as any other kind of stroke.


Another problem is that you can't see it - it is internal and you look normal to everyone else so they tend to underestimate it when you tell them! It's not like a broken leg where you can see the plastercast!  So you have to communicate with everyone and tell them what's happened.  It's like looking at a car without an engine - looks like a car, feels like a car, but it won't start because the engine is faulty!


To answer your questions:- 

1) How long does recovery take? Answer - it takes as long as it takes. Everyone is different, depending on how bad their bleed was, how strong you are, and how it affected you. Some recover very quickly and for others it can take months and years. In your case you've only just started to recover so don't beat yourself up about it. You could have a way to go yet.


2) Should you quit your P/T job? Only you could answer that in the fullness of time, but give yourself a chance to recover first.  You've only just started. How about a phased return to see how you get on? Or a change of duties on a temporary basis whilst you get your strength back?


3) Hit the wall?  That will happen, especially in the early days that you are now going through - that's your body telling you that you've had enough for one day - listen to it.  You won't need anyone to tell you - your body, remarkably resilient though it is, will do it for you.  Heed its advice and rest.  If there is no improvement over time or if you are worried then see your doctors again. What you describe is not uncommon after a bleed - it's normal - we've mostly all been there. We know it isn't nice and can be frustrating but there's no quick path - you just have to be patient and listen to your body. Again, if you are worried, keep in contact with your doctors.


4) What caused it?  We would all be rich if we knew the answer to that one!  My surgeon told me to imagine I was riding a bike - one minute its all ok and then you suddenly, and unluckily, get a puncture.  Some believe stress can play a part - but you can't measure that because its effects and causes are variable in everyone so it can't be measured - but avoid it where you can.


One last piece of advice - because you can't see it - communicate, communicate, communicate.  People can't help you if they don't know what's up with you - so tell them and keep on telling them.


Good luck in your recovery! And be patient, the world will still be there when you are ready to face it!  I've been there and got the T-shirt!

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