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Hi,

 

I’m a newbie, discovered the forum by chance and it’s been a great help. It’s very useful to hear other people’s  experiences as it’s something the specialist can’t tell you.  Before I go into my story ... if you spot spelling mistakes, I’m Belgian, so English isn’t my first language and my Ipad has the unfortunate habit of switching Words to Dutch 😂

 

I had my bleed on feb 18th. I’m single, so was home alone. I’m used to severe migraine attacks, but immediately realised this was something completely different. Immediately sent a chat message to some friends to bring me to Belgian variant of A & E.

 

I tried to get to front door to unlock IT, but had to give up half way there, so first sat down and then, as I thought IT might be a bit too dangerous should I lose consciousness, laid down on the floor.

 

I knew I was having a brain bleed as my mom had one (she had a brain seizure a couple of days later and sadly passed away) and because it wasn’t my usual headache. While I was laying there waiting I kept checking if I Could still think, talk, make calculations, move my limbs, ... I didn’t lose consciousness and my friend, a volunteer fireman, was there within 15 minutes (jumped my 1.8m garden wall apparently😂).

 

He called for ambulance while I gave him all relevant information, like the fact I suspected brain bleed, my blood type, the fact I have porfyria which affects the medicine  they can give me (still thought I might lose consciousness).  I started vomiting too ... and had just eaten a huge bag of peanuts, so not a pretty sight 😂 
 

I was in A & E within an hour of the bleed, with mild hypothermia (from laying on cold tiles) and scan showed, like I suspected, a severe bleed. As soon as my COVID-test cleared, I was brought to ICU, hooked up to all kinds of machines and drips. The severity of the bleed made them think I’d continue having them through the evening, according to my brother. Found that out later though. 
 

I was pretty alert throughout and was able to discuss my condition with the head of ICU that evening (though by then I was pretty doped up on pain killers). They suspected an aneurysm, but it wasn’t clear on the scan. I underwent another type of scan the next day, which showed a possible aneurysm, though extremely tiny.

 

They had me transferred to a more specialised hospital, for further testing and operation (clipping cos deemed too tiny for coiling). I had an angio, which showed no aneurysm however. All arteries okay.  I had a SAH with no apparent cause it seemed, Hunt and Hess grade 2, Fischer grade 3. 

 

All in all I was hospitalised for 10 days. I’m home in sick leave since March 1, have another scan and consult with neurologist next week. At the moment I’m okay. Some days are better than others.  I still have an occasional headache, very mild though. Then again, I’m used to severe headaches from migraine, so ...  

 

Sometimes my brain does some strange things, strange sensations within it, which is a bit frightening,  but ... part of the deal I suppose. I’m okay with doing things around the house and garden, doing administrative stuff, .... but I take care not to strain myself and I do it way more slowly than before.  I need more sleep than I did before  and it’s hard waking up, takes me longer to be completely awake, but it’s still early days.

 

My concentration is getting better too. Think my eyesight in one eye has worsened a tiny bit, but might be too early to have it checked out. One thing I found out though is that I can’t get angry at stuff anymore, otherwise I get a splitting headache 😂 Will have to learn to become more Zen. 
 

I think I might be ready to go back to work, though not fulltime. Work has been brilliant though, if okay for the neurologist, I can go back in whatever capacity I want, with sliding hours where I do my hours whenever I want, so can take naps when needed.

 

I know I have to be careful not to want too much too soon, but ... as a single person, having wages replaced with sick pay is a catastrophy financially. I’ve taken out a loan last year to build my house extension, so ... need to pay that off or I lose my house. 
 

I’m lucky I work for local government, so sick pay doesn’t kick in immediately (still have some days left before it does), so my idea is to gradually move up to full capacity, using the remaining ‘sick days’, the offered sliding hours and then my vacation days (I have a whopping 35 days stashed up) to the fullest so I can rest up when needed, taking care of my body and mind, whilst minimizing the financial loss.

 

And to be honest, I actually long to go back to work. I’m bored to death at home. 

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Hi Ilse and welcome.


So glad that you've found the site helpful and realise that you aren't alone.  

 

Can you tell us a bit more about yourself - age, job etc.  Don't worry about your English either - it's probably better than a lot of people's that I know whose first language is English!!

 

You seem to have kept your sense of humour too, believe me this is a huge bonus and get me through a lot of tough days.

 

All I can advise at the moment is to take your time going back to work full time (not sure what you do, hence the request to tell us a bit more about yourself).  If you can, I'd take a few of those stashed holidays as soon as you can.  You still need to rest and overdoing things too fast may set you back in your recovery.  You need to rest and drink lots of water to make sure your brain is hydrated.  Listen to your body and stop when it tells you to.

 

Look forward to hearing more from you - you sound like you're going to be fun :-) 

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I’m 43 and I’m head of a tiny department (4,5 people and no, I didn’t saw one in half ... she works for another department too). Local government, a coastal town in Belgium. Closest equivalent to my job I’ve ever seen is ‘housing inspector’, that daytime program on the BBC a few years back, so declaring houses uninhabitable due to low quality or because the inhabitants are hoarders or just plain messy.  

 

I also do some local taxes, so I have a really positive job! 😂 😂 Stress level is moderate most of the time, high on occasion, but after 16 years I’ve pretty much seen and heard it all, so doesn’t really get to me anymore. Blood pressure is always 12/8


I’m keeping hydrated, so much so I feel like I’m getting my 10000 steps a day just by my frequent trips to the bathroom 😂 


Yeah, you have to keep your sense of humour. I’ve even ordered some more mouth masks and T shirts with a sarcastic text, to keep my wardrobe updated 😂 One says ‘ long story short, I’ve survived’ 😂 because I’m already sick and tired of explaining what happened 🙄  Some friends feel I’m not taking everything serious enough, but I am. 

 

I know I’ve been very lucky to have escaped unscathed and I have taken steps since the ‘incident’ so that, should this or anything like it ever happen again, but with worse outcome, my brother knows what to do regarding funeral (though he won’t approve the sarcastic song choice 😜), have updated my living will, so there’s a DNR, the legal documents regarding ‘unplugging machines’ are in order, ...

 

So yes, I do understand I went through a life threatening and life changing ordeal, but ... I refuse to let it rule the rest of my life I suppose. You just have to get on with it, the best you can. Like Chumbawamba sang, way better than me: I get knocked down, but I get up again. You’ll never keep me down.

 

And yes, I know I need to rest a lot. I used to sleep around 5 hours a day (insomniac), now that’s 8-9 hours and am not doing anything all that taxing yet. That’s why my plan is to phase in work gradually. I’m just lucky I can do it like that, what with my tiny stash of fully paid sick leave and then my 35 vacation days left.

 

The flexibility Regarding when I do my hours is also a big help and The good thing about being the boss is that you can delegate though, which I’ll be doing more from now on, whenever I feel I need it. 
 

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Welcome Ilse, sounds like you have a great attitude and I applaud your talking about your wishes , I did likewise after mine and updated my will and talking about death is not a taboo in our family, although obviously not a cheery subject.

 

Glad you plan a phased return and to delegate more, and the extra sleep and rest will help 

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Hi llse, a very warm welcome to BTG :) glad you found us.

 

As the others have said, i love your attitude and the fact you have ordered the masks and t-shirts :thumbsup:

Really hope your phased return to work goes well. We look forward to hearing how you are doing.

 

Please feel free to also join in the daily banter in the Green Room:

 

https://web.behindthegray.net/forum/9-the-green-room/

 

Take care, go steady. 

Love Tina xx

 

 

 

 

 

 

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Ilse, all I can say is "Well done girl" - believe me, that attitude and humour will be a great asset to your recovery.  My husband has always said that it was stubbornness and humour that got me through the tough days.  Loving you and your outlook already xx

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Hi Ilse,

Another welcome, and so happy you found us...Love your humor, enjoyed reading what you wrote...You seem to already have what took me so much time to find...a positive attitude, That is wonderful.  Your chumbawanba reference made me laugh out loud :)  

 

xx

Jean

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Well, haven’t tried the other part of the song yet 😂 am waiting for next consult to ask whether it’s okay to have alcohol (low quantity) again

 

Think my attitude stems from past experience. My mother’s side of the family has the unfortunate hobby of dieing at a relatively young age, so already took into account that it could happen to me too. It makes you live your life differently I suppose.
 

My gran has survived a grand child, her three children and her husband. Though each and every death devastated her thoroughly, she always found the inner strength to go on and live her life, to enjoy the little things. I called her the original Phoenix. When she passed away at the age of 86, I had a Phoenix tattooed on my back in her honour. I guess I’m just like her, I just use ‘experiences’ like that to ... become stronger?


There’s still too much of the little things for me to enjoy: the Hairy toddlers (4 cats), early morning photography in the middle  of nature, books, music, holidays, food, ... And though Covid and my 6month driving ban (grrrr) might have put a stop to some of that, it’s only temporary. I’ll just use the intermediate time to get my strength back up. 
 

When there’s still things like the pic to enjoy, how can you be down? Though that said, I’m now off to clean upstairs and if there’s one thing I hate, it’s cleaning windows 😂😂😂😂

42E105C5-6C4D-4F44-9D26-BC4578F83E54.jpeg

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Welcome Ilse! What a wonderful picture. Thank you for sharing and for being so open about your experience. Perspective really do makes coping a bit easier. I admire your attitude towards it all. 

On 24/03/2021 at 16:48, Ilse said:

Like Chumbawamba sang, way better than me: I get knocked down, but I get up again. You’ll never keep me down.

 I love this...keep it up! 

 

😊 Ann

 

 

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  • 4 weeks later...

Well, did my first two days at work and .. I’m pretty much okay. Was well tired yesterday, but think that’s more because sunday’s Line of Duty’s cliffhanger left me a bit hyper and unable to sleep than due to work 😂 

 

I work a bit slower than I used to (that speed was untenable however ... I was like the Duracell bunny on speed), but hectic mix of phone calls, huge open work space with colleagues dotted about here and there, the adoring public when they come to make a complaint, politicians badgering you, ... (it’s such a joy being a local civil servant 😜) ... so far, I’m dealing with it quite well. The 80% progressive return was approved, am off tomorrow to just laze about. 

 

Had results back from last week’s MRI (neurologist really, really, really wanted  to be sure there wasn’t a hidden aneurysm, so had to psych myself up again to get into that damn machine... claustrophobia)  and everything is okay. It was definitely perimesencephalic. Only one more neurologist visit to go: mid august, so I’m legally allowed to drive again (by law at least a 6month ban in Belgium).  

 

Already booked a holiday to the South of France beginning of September, so ... the countdown begins: getting vaccine, getting driving license back and then off to the mountains to take pics, drink Chartreuse and eat humongous amounts of excellent food 😂
 

 

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Ilse, that's great news on all counts - remember to still take it easy when you can though.  I am so loving your attitude to life and your recovery - well done you!! xx

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  • 3 weeks later...

Hi llse,

Hope your recovery is going well.

I was interested that you mentioned your history of migraine. I had weekly migraines through my teens until my early twenties. They then stopped until about ten years ago, they then started again but instead of horrible headaches and sickness, they were visual disturbances and feeling of being washed out. These got more frequent during the year before my SAH. In the two years since the bleed I haven't had any further incidents. A small bonus from the SAH. 

Keep on being  positive and you will soon be back to doing all the things you enjoyed before.

 

Regards

Bri. 

 

 

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