Ups And downs

[Missjc1986]

Hi all

 

I’ve been reading for a while but only decided to join today. I’m a 31-year old female and before my NASAH, I had generally very good health, non-smoker, am not over-weight, eat well and was physically active.

It’s been 10 weeks (2.4.2018) since my permesencephalic venous subarachnoid haemorrhage. It was a small amount of blood in the interpeduncular prepontine and right ambient cistern. 

 

During at heated phone call at work, the 'thunderclap' headache came over me and my neck instantly stiffened. I have suffered from migraines most of my life but knew straight away this was different - I was very distressed. I called my partner, and luckily, we were in a place that had paramedics onsite. They clearly were worried about a stroke or brain related issue after they quickly issued morphine and with no relief (the pain actually got worse) got me to the hospital ASAP.   

 

I spent 12 days in hospital - after the bleed diagnosis, I had a cerebral angiography which ruled out an aneurysm and other abnormalities. They said rest would be the key. I generally felt quiet well in the hospital beyond low-blood pressure and boredom (no screens) but then struggled with the flow on effects with my body as the blood dispersed into my spin and caused pain/spasms walking and moving.

 

I spent another 2.5 weeks at home resting and getting moving again, then returned to work part time and graduated to full-time about 2 weeks after that due to work pressures. I still feel like I struggle at work with afternoon "brain fog" - normally something you'd get up from your desk, have a coffee and re-group but I often just can get past it now.

 

At this point of returning to work almost full time (about 6 weeks out) I was feeling good, not taking pain killers and saw my neurologist where I received a positive outlook with the aim of approx. 4 months to be feeling 100% again. He even cleared me to travel to Spain (I’m from Australia so 30 hours of travel) for a friends wedding at the 8 week mark.

 

I’ve just returned from the trip to Spain - the travel was very long and the week there (while lovely!) was very busy and I didn’t get much rest. I flew in a returned straight to work on the same day. Now, 5 days later (10 weeks post NASAH) I feel like I am struggling again both physically and emotionally.

 

I haven’t gone to work today and spent the day on the couch - I’ve been exhausted, irritatable, emotional and generally just feel unwell. I didn’t sleep well last night (first night no sleeping tablets since I’ve been back) and woke at 3.00am adding to my tiredness.

 

Do you think I have overdone it and gone backwards in my recovery?

 

I was feeling good (well much better) but now am upset, frustrated and a little ashamed that I feel weak and emotional again, that I've regressed. It’s so hard to explain these feelings to the outside world, especially friends and colleagues who view me as a very strong person.

 

I feel like I’m letting people down. So many of these symptoms are invisible and people have seen me to what looks like I've returned to normal. I also feel bad for my fiancé, who is riding the emotion of this all as well with my ups and downs.

 

Has anyone had similar experiences? 

[ClareM]

Hi

 

welcome to BTG, glad you have found us but sorry to hear of your troubles. 

 

Everything you report sounds very similar to my NASAH journey and I think you know the answer to your question. 

 

I think you have definitely overdone things. To be back at work full time after 6 weeks is amazing and very brave. But then to make that huge trip to Spain on top was possibly just a little too much. 

 

It takes time to get over this type of event injury and maybe you need to step back and take more time.

 

I think your Neurologists prediction of 4  months to 100% recovery seems a little optimistic. I’m 3 years down the line and have accepted now that I will never be 100% as I was before. I don’t have the emotional resilience I had before and work less hours as stress affects my fatigue. 

 

It is a bit of an ‘invisible’ recovery that takes time. Other people don’t understand as you look so well but it’s there all the same. 

 

Listen to your body it’s telling you to slow down. I hope you manage to get some time to recover. 

 

Clare xx

[CharlieD]

Hi

 

I know how you feel as I am only 5 weeks post bleed and am already finding the ups and downs difficult. I have yet to return to work and 'normal life'  but have had times of feeling well and positive only for it to be followed by feeling very low, ill and scared of the future.  I have however read lots on this site from a range of people and there seems to be such a strong pattern of needing to slow things down in the first year and even then having a different approach to life. 

 

I am hoping that this might make me slow down and take in all the things that while I have always been grateful for but I was always so busy and planning the next thing. I always said yes to everything I think I have to change that now. 

 

Sounds like you are doing so much for 10 weeks, I hope I am capable of all that,  you should  see the positive even if you do need to rest more than you used to. 

[Swishy]

Hi,

 

Happy you found this site.  There are so many helpful people here and we can all relate to what you are going through.  Your friends are right you are a very strong person, you survived a brain bleed.  Please don't be so hard on yourself.  This is a big deal and as you have learned often what we struggle with is invisible to others. 

 

I found I had to go slow, much slower than i wanted to.  I wanted to get over it like I had gotten over a bad flu, but, it is taking much more time.  i am one year one month out and am beginning to really learn to pace myself. 

 

Be very kind to yourself, and learn to say no sometimes...It is hard when those around you don't understand how you feel, but not having experienced it makes it very difficult.  

 

Take care

Jean

[Chris G]

Certainly sounds like you are doing more than your body is ready for.  I suggest rest.  Please remember that this is not a steady recovery process.  It ebbs and flows.  Up and down.  One of the concerns is when you feel better and let everyone know you are doing ok, they think you will just continue to improve.  And they may not be patient when you hit a wall.  

 

Please rest as much as you can and listen to your body.  It will tell you when it's too much, as it seems to be doing now.

 

Best wishes,

 

Chris

[Missjc1986]

Thanks everyone - it's really reassuring to hear from people who have had experienced similar situations and realise that rest will be crucial to my recovery. I think I've been so focused and desperate to return to normal I probably haven't taken in the severity of what has happened to me and also portrayed to many around me that I am fine (coz I've wanted to be fine!).

 

I guess I need to come to terms that I'm not 100% yet and probably won't be for a while... it's just so hard when you were a high-functioning busy person beforehand to be reduced to this. That is my biggest struggle.

 

Clare - you noted that your emotional resilience has changed, this resinated with me. I was someone that NEVER cried previously and now I often find myself upset and feeling helpless in situations, when I'd normally just be mad or angry.

 

Off the back of this forum, I had a chat to my work today about my regression in recovery and that I probably need to take a step back if I want to keep moving forward. Explaining that while I look well and at times can function well, I'm not there 100% yet and probably won't be for a while hopefully will help them understand what is going on (they were really good about it).  

 

Can I ask, do you think it's worth checking in with a GP on my situation? My nuero said I only need to go back in a years time for a follow up scan.

[Tina]

Hi JC

 

I would definitely go and see your GP regarding your work situation , they should help and support you with your ongoing recovery in between your follow up scan with your Neuro.

 

My GP has been very supportive and understanding.

Please let us know how you get on.

 

Happy Birthday to you, hope you have a wonderful day celebrating  xx

 

Love Tina xx

[Macca]

Hi,

 

There is absolutely no doubt in my mind that you have overdone things.  Brain injury is a traumatic experience to go through at the best of times and it hits at the very core of your being.

 

Being able to do as much as you did so soon after the event is a very rare thing indeed.  Your body has told you it's had enough and needs a break and if you overdo it again, it will react in the same way.  So learn from what has happened, re-analyse what you are doing and slow down a bit.  Learn to say no and to delegate.

 

Give yourself a chance.  If you always do what you always did, you'll always get what you always got.  Never truer than with a SAH! (I don't mean SAH will happen a second time, just that your body will react to doing too much, too soon)

 

If somebody hit you over the head with a cricket bat, you wouldn't just expect to get up and carry on as if nothing had happened, now would you? So in this case, the SAH is the cricket bat and it's just walloped you.

 

So give your body a break and slow down while it recovers from the blow.

 

Keep talking to your medics and your employers.  They all treat you much better if you keep talking to them!

 

Good luck,

 

Macca

[frmertd]

Missjc, best wishes in your recovery.

 

I took 3 1/2 months off work and I was not 100% until 4 or 5 months. I remember the intensive care unit doc telling me, when he sees these bleeds in younger people , they generally are either 1)doing drugs like cocaine or 2)type A go getter, miserable workaholics. Which are you?? So I was kind of laughing reading your post (no offense) because you sound so much like the second type.

 

Did you notice how many times you talked about work in your post?? I think God sometimes does this to tell people to slow down. To reexamine their lives. Ask yourself if this life is making you happy. I was very much like you before "the event" and have slowed down considerably in everything I do. And I have to tell you:I am so much happier with life now!!!!!!!! 

[Winb143]

Good luck on recovery JC,

 

Just as you think you have this licked, "wham" along comes a bad day just to let you know to take it easy.

 

I wish you well in recovery and it is a slow process (Well was in my SAH). Take it easy and think happy thoughts xx

 

All the Best

Win xx 

[Missjc1986]

Thanks everyone for your thoughts (and birthday wishes).

 

@frmertd you make a good point with how much I spoke about work - I have always been that "go-getter" type but luckily not the miserable workaholic sort! I work in professional sport and love my job/am passionate about what I do hence why it's been hard to step back. While still a job, it's been a big part of my identify for a long time so I'm challenged in that sense that I can't just disconnect and not care anymore.

 

I realise I need to find the balance between not stressing myself and managing my workload so it doesn't effect my recovery. I'm confident I'll be able to do it... it's just a big readjustment. But very much noted it's sometime a message from above to revaluate things!!!

 

I'm going to look at chatting to my GP just for a bit of reassurance.

 

[Catwoman23]

Missjc

 

I totally understand about your work being your identity. Im a primary care doctor who works many hours and who checks messages to do on vacation. Sometimes I hide my iPad and carry it around so hubby won’t see it?. But your brain just had a injury and it needs rest. It probably needs rest more earlier in the stages. Some do need more time than others and everyones different.

 

I don’t know what your job prescription is but if its like mine which involves many things going on at once, sometimes addressing many things to different people and people disrupting you all the time and if it involves making decisions, I think you need to sit back , relax and take time to let the brain rest. Your gp or neurologist can write a letter or fill out forms for work.

 

Goodluck. You might be frustrated that you can’t work now but think of the big picture and relax so you will be better in the long run.

[Daffodil]

Miss J. I get it I really do. I actually was signed off work for over a year post my bleed and ops but yes I wanted to get back to work, I enjoyed the purpose of it and was still curious about what was possible plus I felt I had something to still bring. Plus on top of that I was only 39 and had a mortgage to pay.

 

i know you are coming from a slightly different place but you have to realise that for now at least you have a new level of limits and I think maybe you pushed too hard too soon, that said if you work in sport then that’s not surprising as it’s the factor that works to make athletes successful but here’s the thing, with a brain injury you have to give it space to heal.

 

It’s exercising away constantly, working unseen, it’s running the entire body shop using energy but it also needs to heal from the blood assault it has had. That means time to shut down, pauses between doing things. 

I guess what i wanted to share is that 6 years on I still have  curiously  , drive and ambition but know that I have different limits and capacity to what I did pre bleed.

 

I personally found I just can’t work at the same rate or frequency I did back then, ( and probably never will) my brain just doesnt allow it. The thing that I know helped me is I built things back up slow and got to where I am now and honestly can tell you I am just as capable if not more than before BUT I don’t have the same motor capacity nor ask as much of myself. I note my traffic lights and if it’s red I stop...most of the time.  Rest is part of my landscape and I enjoy the view more for those pauses that I build in. 

 

So I think what everyone who replied is saying is ‘slow it down’ . Your survived something potentially life changing, life ending and it will serve you well to invest in a change of pace for now and who knows you might enjoy what that brings. I wish you well. 

[frmertd]

Daffodil!!!! you are wonderful as always. Daffodil, you helped me immensely during my recovery. I cannot thank you enough. I see that a few people have had recent bleeds and going thru tough times. I highly recommend you all look up her old posts because her explanations of things are wonderful. They helped me immensely when I was struggling. You are an Angel.