Jo - Intro...

[Jo_S]

Hey! I'm Jo I'm 33 and based in London.

 

I've commented on a few posts previously and intended to write my intro... so here I am (albeit a little late!)

 

I love CrossFit; I was in the gym on a Thursday morning at 6 am in early January and we'd just finished doing pull-ups. All of a sudden I had this rush from the back of my neck over the top of my head to my forehead, my hearing went funny, I lost my balance, I felt nauseous and as if I was about to pass out.

 

I tried to crouch low to the ground (thinking I was going to faint) but it didn't stop and I stumbled to the corner of the room where the coach came to help me. My body was shaking and my heart rate on my watch was at 128bpm and increasing.

 

Lying on the floor seemed to help and someone in the gym gave me a few sweets, thinking I had low blood sugar (after all it was 6am in the morning) but after some time on the floor I tried to get up again, the colour drained from my face and I felt like I just needed to be horizontal. I wanted to go home and sleep it off, but my friends in the gym took me to A&E. The car journey was only 8 minutes, but it felt like the longest journey.

 

I lay on the floor in the A&E waiting room and was eventually seen by a nurse - the rest is a bit of a blur, I had a CT scan that confirmed a bleed on the right side of my brain and I started vomiting. After a second CT scan (with dye) I convulsed whilst vomiting and came round with vomit all over me.

 

I felt that this was my low point, but things seemed to get better after this - my body stopped shaking and I felt less pain with the intravenous morphine and anti-sickness. The CT scan came back clear of any bulges in my vessels, so I was told it was probably a weak blood vessel that burst, but I was transferred by ambulance to a specialist hospital for in-person review.

 

I had no surgical intervention. I waited all day in A&E for a bed on the neurosurgery ward and had to wait for an angiogram the next day and in the meantime, I started taking Nipodomine. My friend from the gym stayed with me the whole day until my mum arrived - she had googled 'subarachnoid haemorrhage' without me knowing and refused to leave my side. I don't know what I'd have done without her!

 

Friday morning I was woken up at 6am and told to 'prep for theatre.' This was a rather scary thought. I was nil by mouth, I hadn't eaten properly since Wednesday evening and it seemed that the thought of eating helped me to get through! I'd not long bought my first property (solo) and, with thoughts running through my head, I brain dumped everything to my mum in a text message (my poor mum.)

 

The angiogram was around lunchtime. The nurses were so nice and the radiologist told me that he would let me know straight away if he could see anything, which he couldn't and the consultant confirmed this to me later in the evening.

 

I found the angiogram to be the weirdest experience, not knowing if my head was attached to my body was definitely an extraordinary feeling! I slept most of the time that I was in hospital - the eye mask and ear plugs that my friend brought to me in my hospital bag were everything I needed.

 

I was discharged on the Monday and left hospital armed with a brain injury leaflet and paracetamol. My mum stayed with me for two weeks following this. I'm not going to lie, I was SO apprehensive when leaving the hospital, I just couldn't comprehend what had happened.

 

The sciatic pain, which everyone seems to encounter due to the blood following centre of gravity and irritating surrounding nerves, started immediately after leaving hospital but this only lasted for about a week or so along with what I can only describe as flashing head pain, which was mostly during the night.

 

I only took paracetamol regularly for around a week. I started to feel more normal within 2 - 3 weeks, but I had lingering issues including:

 

• Fatigue
• Tinnitus in right ear
• Light sensitivity (I can't stand bright lights even to this day - it makes me feel unwell)
• Sound sensitivity (this has now passed)
• Feelings of 'brain freeze' (like when you eat icecream)
• Loss of short term visual memory 
• Brain fog (weirdly, I can't do maths anymore??)
• Subconcious anxiety (I think I panic at the thought of feeling dizzy or unwell)
• Jaw clenching and teeth grinding 
• Twitches in my right eye (this has now stopped)

 

Fast forward to today, I am now four weeks in to a phased return to work. I have a busy job in the city of London and I am trying to slowly get back to normal life. I have given up drinking alcohol and I'm too scared to lift heavy weights yet (I was told by the consultant I could do this after 8 weeks..) but I'm using this as an opportunity to become the best version of myself.

 

Although having said this (!) I think I have hit a bit of a brick wall this week. I have been trying to do some cardio classes at the gym, I'm a little stressed with modern day life and I tried to increase my days of work, but I have encountered debilitating anxiety, to the point where I felt like I was in a constant state of panic and I couldn't make it to the office -

 

I just kept thinking I was about to pass out. I got myself checked out for piece of mind and I had confirmation that it is indeed anxiety. Perhaps I have mentally and physically exhausted myself. 

 

I'm feeling confused about whether this will last and that I have to accept a new normal, or, if I'm running before I can walk and it's just too soon? Who knows.. I've been trying to be so positive about what has happened,  but as someone who was so active and can't sit still, I'm finding it difficult to sit back given that I'm 'physically fine.' Would be interesting to see if anyone else has experienced this.

 

I'll leave it there for now.  I've found this forum very helpful so far and hopefully I will continue to do so.

 

Nice to meet you all 🙂

 

Jo x

 

[jess]

Welcome to btg sorry you have to be here xxx

 

Everything you are experiencing is pretty normal drink plenty of water and rest when you need to xxx

 

Hope things continue to improve for you xxx 

 

Look forward to hearing more from you xxx

[Skippy]

Hi Jo

 

Have also experienced what you're going through.  The anxiety was diagnosed as PTSD and, although mine was an aneurysmic bleed, I have never felt comfortable enough to return to the high intensity fitness regime I had before - jogged, step aerobics, aerobics etc.  Even back pre SAH when doing these activities I could feel my head pounding - who knows the aneurysms could have been there then.

 

I think you may be running before you can walk - took me a full year to be able to work all day without a sleep and the headache eventually abating.  I now work 37 hours a week in a very busy school office where there isn't five minutes peace.

 

Accepting the "new" me was the hardest, but once I had and had come to terms with everything that had happened - my recovery was mentally easier.  The counselling that I received for the PTSD was a massive help too.

 

This forum saved my sanity and my life - so welcome to the family.  My favourite thing to say to newcomers is "it can be a long road to recovery, but you can make as many pit stops along the way as you like".

 

Take care, and like Jess said, make sure you're staying hydrated - it helps the brain massively.

[Jo_S]

Thank you so much for the responses @jess and @Skippy I really appreciate the advice!

 

I also really love the 'Pit Stop' analogy... I now keep using this when I refer to my experience last week

[Jo_S]

Hi,

 

I hope all is well with everyone, I wanted to check back here for a little bit of advice..

 

It's now been 6 months since my bleed - my 3 months consultation was pushed back and I now have this tomorrow. I've felt quite lost over these past 6 months and I'm a little (or rather, very) nervous and apprehensive, about tomorrow but hoping it goes well and that I can get the answers I need.

 

I'm genuinely surprised with my recovery physically, as it has seemingly been quite miraculous. I am now back to work full time, going to the gym and trying to manage some sort of a social life - as well as going on holiday!

 

However... I feel that although I am recovered physically (maybe not fully, but almost there!) - I do get stressed very easily, have a lot of tension headaches still, tinnitus and I feel like I am suffering a lot with my mental health - I did so before, but this is just another level. Some weeks I can be fine, some weeks I am not and I can't work out if I am coming or going/ what I need and what I don't need.

 

I feel like people think that just because I seem fine physically and that I can go to the gym, do some social things, that I am fully recovered. I still get exhausted by pushing myself to do these things. I'm not sure if this is my own issue, but my friendship groups have changed drastically and I feel like some people have distanced themselves from me. Based on the fact I can cancel plans quite abruptly, I am feeling that my friendships are diminishing. It's also now got me questioning my behaviour - has this got anything to do with my bahaviour changing? I'm unsure.

 

It's funny - pre bleed I used to think that I couldn't cry, no matter how hard I tried. Now I feel like my emotions are everywhere, I've cried so much and I'm feeling quite alone (even though I'm probably not!) 

 

I always find it very hard to articulate how I feel... I'd be really interested to know if anyone else encountered this?

 

Has anyone taken anxiety medication ? Is it even possible to take anxiety medication after what has happened?

 

All the questions ....  perhaps one for my consultant tomorrow...!

 

Jo xx

[Skippy]

Hi Jo

 

I can relate to everything you've said above.

 

A good thing to say to those who don't understand?? "I look well from afar, but I am far from well"

 

My friends stopped inviting me out for a while purely because they either didn't know what to say or they were worried that they were putting me under pressure to come out by asking.  If you're particularly closer to one friend, message them to ask them to let you know next time you're all going out, but not to mention it to others in case you're not up to it on the day.  That way you can let that one person know at the last minute if you change your mind, rather than having to let loads of people know.

 

As for the emotions - I used to cry at the drop of hat.  I've always expressed how I feel and could control the tears, but after - nope - I was a wreck.  The best thing I did was speak to my GP and be referred for counselling.  I was diagnosed with PTSD and had a few sessions with a therapist!  Worked wonders in all areas of my mental health.  Don't get me wrong, there are days now when I'm over emotional and days when nothing bothers me - but I think that's more to do with the menopause than the SAH.

 

I declined the meds in favour of trying the therapy and it worked for me - but there is no stigma in taking meds for anxiety.  If you have a headache, you take a pain killer - no difference for me - if it helps you live your life to the best fulfilment you can, and it works for you, then go for it.

 

Take care lovely xx

[ClareM]

Hi Jo, I echo Sami's words totally. I too lost a lot of friendships post bleed, but I have made new friends.  They didn't know me before the haemorrhage so accept me as I am now, not how I had been before.

 

I too looked very well and everyone used to say how well I had recovered. Little did they know what was going on really and how I was struggling. My mood was affected and I have been on anti-depressants for some years now. I hate taking them though I know I need them, but as Sami says if you had a headache you would take a tablet, what's the difference? They keep me on an evenish keel so for the time being I'll stick with them.

 

I'm now 8 years post NASAH and sometimes forget how tired I still get. We went to the IOW recently for a family break and I was exhausted afterwards. We walked and talked so much that it must have just worn me down and I forgot that I need to still take regular breaks. I needed a few days afterwards to get over it! 

 

Pushing myself is one of my major downfalls, particularly at work. If you can try and step back a bit it will help but sometimes your characteristic traits are so strong that it's hard to do this. Just bear that in mind, your mind may tell you that 'of course you can do that' while your brain is saying ' slow up - I'm struggling'

 

Hope everything goes well at your follow up, keep us updated.

 

Clare xx

[Jo_S]

Hi @Skippy @ClareM 

 

Thank you so much for coming back to me and for the kind and wonderful words of wisdom. This is so helpful!

 

Listening to my body is certainly one of the hardest things that I have found to do!

 

I honestly feel so fortunate and grateful with my recovery so far and trying to be so positive 🙏

 

I'll keep you updated with my follow up.

 

Thanks so much again,

Jo xx

 

 

 

 

[Skippy]

Jo, it was one of the hardest things for me too.  Once I realised the "old" me was never coming back, I stopped fighting and accepted that this was it.  It did get easier after that, and I can honestly say that I am 98% back.  I work full time in a very busy school office and have multiple roles within.  There is never a day when I'm twiddling my thumbs.

 

Staying positive and good sense of humour help

 

I'm nearly 17 years post SAH and it took a while to get where I am - though I still can't tolerate high impact exercise (I used to love running and step aerobics) as it's giving me a thumping headache for days after.

 

Please do keep us updated, it's heartening to read of people's recovery journey and to know that we've been there with you and for you xx

[Jo_S]

Hi All,

 

By way of an update… I am almost coming up to the 1 year anniversary of my SAH. I am feeling SO much better after the 12 months and I’m almost feeling back to my old self again. 
 

However, the day before Christmas Eve my best friend ended up encountering the same thing (I currently have minimal details from her family, I just know that she had a bleed on the brain)…. except she wasn’t so lucky.

 

Just before midnight on Christmas Eve and the early hours of Christmas Day, her life support machine was turned off and she donated her organs to people in need. 
 

I am absolutely devasted. I cannot comprehend what has happened… I also cannot believe that it happened to both me and my best friend. I am now going through all the emotions - reliving the incident myself, having survivors guilt but also feeling incredibly lucky to have my life. 
 

I’m not sure what or how to feel right now. This year has been so tough 😢

[Super Mario]

I can imagine how devastated you must be feeling. Take comfort in knowing that she has given others the gift of life through her donations.

Please accept my deepest sympathy for the loss of your best friend.

[Louise]

Aw so sorry to hear that - I had survivours guilt for many years (long story) but try not to let it get to you try to find postives and comfort and most of all if this goes on seek help take care. 

[Swishy]

So sorry for your loss.  All of us here are fortunate, it is ok to feel lucky to have your life.  Go easy on yourself, I bet your friend would want you to.  Thoughts are with you.

xx

Jean

[Jo_S]

Thank you so much for your kind words - it’s so hard to process. 
 

We are all very fortunate for sure and I think that’s what really hit me… I have had a lot of therapy this year to cope with the guilt and the anxiety.. and I’m feeling like I am having to go through it again, alongside the loss of my friend.

 

She was one of the strongest people I know and the fact that she helped me so much this year is what will get me through.
 

I hope everyone is doing OK and having a lovely festive period ❤️

 

Thank you again for the lovely messages xx

[Swishy]

Hello again...

The process is a journey, one step at a time.  Sending a heart felt hug as you continue... You say your friend was strong, your words make me think your pretty strong yourself...here you are reaching out to all of us to steady yourself ....  xx

Jean