Five and a half months!

[CharlieD]

Hi everyone,

 

So I am 5 and a half months in to my recovery and still feel there is such a long way to go.

 

I still have very strange episodes with sudden head pain and I tell friends I feel like a my brain is a constant snow globe, feeling shook up.

 

Obviously there is the fear which I know you all know well. I just wanted to see what stage other people were at this point? 

 

Did you have a lot of recovery to do? I do worry I have recovered the amount I am going to and the rest will just be little bits. 

 

I would really like to hear other people's experience. I know people mention the headaches on here but I wonder at the times in between headaches do you have a clear head and if so was it clear at 5 and half months? 

 

I know there is no set time on anything and we are all different but I see there are often similarities on here.

 

Thanks everyone. 

 

 

[Skippy]

Hey Charlie

 

One thing I learned very early on was not to set my stock by everyone else's stall i.e. just because your friend's baby was walking by one doesn't mean that yours is better or worse if they started before or after one.

 

At five and half months I was a complete wreck. I had headaches every day, couldn't be left alone as I was too anxious and was having counselling.  I hit the 1 year mark and it was as if a switch had been flicked.  I stopped needed sleep during the day, I had more energy, the headaches had all but gone etc.  We are all different and will recover at different rates.

 

Key here is to listen to your body and make sure you stay hydrated.  12 years on and I work full time (37 hours a week) in a busy school office with half an hour break.  Don't get me wrong, I come home some days with a headache or shattered but no where near as bad as I was 10 years ago say.  I still notice improvements now and for me its because I'm keeping my brain active.  

 

At your stage is recovery I couldn't read a book because I'd forget where I got to the day before, so I started reading magazines and doing crosswords and word searches - it keeps the brain ticking but you're not exerting yourself physically.  

 

Do little things that work best for you - if you need to sleep, then sleep; if you want to walk, then walk.  Baby steps can lead to huge leaps, you are in control of this, it's just figuring out the best "this" for you.

[ClareM]

Hi Charlie

 

I echo what  Skippy says everyone is different. At five months I was mid phasing back to work and struggling with the hours I had to do. By a year I realised I was never going to be able to my old job so changed and reduced my hours. Since then I have changed jobs again due to stress and I can now - at 3 and half years out feel I am settling.

 

I still get days when my head feels like cotton wool and am usually floored by Fridays but it's mainly a matter of coming to terms with the new normal and what is best for you. Unfortunately the isn't a one size fits all so it's seeing what works for you and you will make mistakes and feel the consequences.

 

Just try and be kind to yourself and take it slow. And when you do realise that you have done too much take that on board and adjust how you do things in the future.

 

You'll get there eventually, we all do it just takes time and patience.

 

Good luck and keep us posted on your recovery.

 

Clare xx

[CharlieD]

Thanks Clare and Sami. That is really good to know that you had substantial recovery after this stage. I know it does not mean I or anyone else will recover at the same time but hopefully means I still have a lot of recovery to go and therefore a lot of improvement. 

 

Sami I am glad you specifically mention your headaches and anxiety improved. I actually read some of your earlier posts after your reply. You mentioned waking every day with the feeling in the pit of your stomach and the head pain, sounds like that has gone for you.  Hopefully they will for me too.  It also made me stumble across some other posts which mention some of the weird head stuff I have which again is reassuring not be the first to not know what the hell is happening in my head!

 

Clare I too am phasing back to work and at the moment it takes all my energy to do that.  I do like my job but I think I will find out over the next 6 months as I do more if it is realistic for me. Luckily I was part time anyway so I hope so, I really like it but I will put my health first. I am glad you found what worked for you.

 

This is such a great site, thankfully I found it early on in my recovery and I think it makes a real difference when there is so little knowledge out there about SAH's unless you are talking to specialists.

 

I rest quite a lot still and will make sure I drink plenty. 

 

 

[ClareM]

Hi Charlie, glad the advice Sami and I offered has been helpful. Take your phased return very slowly, it's easy to get carried away and think you can do more than you really can.

I love my new hours now, 30 hours over 4 days with Wednesdays off - my recovery day.

 

I am glad you are finding the site helpful, I know I did in my early days. Good luck!

 

Clare xx

[Skippy]

Hi Charlie

 

Yes the horrible feeling in the pit of my stomach has definitely gone - there were times when I confused excitement with anxiety - like getting ready to go out in the early stages - now I realise that I was excited to go out and be "normal" again and not anxious. 

 

As for the head pain - yep definitely gone.  I very rarely get headaches now and to be honest, when I do, they are mainly hormonal! Remember, your injury is to your brain - the one thing that can't stop working completely - the one thing we take for granted.  It has a lot of healing to do and it can take a long time. 

 

Help it by resting when you can and drinking plenty of water.  Also try not to get stressed or worry too much - easier said than done I know, but it does help a great deal.  When your stressed or worried, you tense up and the muscles on your scalp tighten and can be the cause of the head aches.

 

You're very early on in your recovery and remember, its a long road to recovery to but you can make as many pit stops along the way as you like.

[Winb143]

Hi Charlie what all have put I agree with.

 

I was in cuckoo land at your stage with hydrocephalus and couldn't stay awake, when I had shunt put in to syphon water off brain.  I woke up Dogs happy to see me and what my Family had been through must have been awful !!

 

Then I started to worry about a pain in my head and the creepy crawly feeling on my head etc etc. I told my Family not to row in front of me or tell me their troubles as I couldn't take sad, doom n gloom stories.  I can now but not telling them this yet lol. Playing on it  ha ha 

 

I came on here thinking" uh oh next step is me popping my clogs, wait that girl GG can laugh about it and so can that girl Sami and all on here"

 

All seemed happy and that is when I realised there is a life after a bleed and life goes on be it all at a slower pace and here I got my smile back. xx

 

So keep stress free when possible and sing happy songs and before you sleep and wake up happy when possible, as to be honest I awake some mornings a right moaner.  Hush don't let the others know ha ha xxx Good luck on recovery XXXX  Remember as  Sami put it Pit stops  !! xxxx

[CharlieD]

Thanks Win I completely know what you mean about seeing people on here and thinking they seem to have a life still. 

 

I will do my best to take all your advice and try not to worry. Not sure I am there yet though. 

 

I will however be sure to pay attention to the part about listening to my body. To be honest it is good to know I might be 5 months in but I have a way to go, at least I have something to look forward to but I think I know that things will be different. I hope in time different may not mean bad, maybe just slower. 

[Patc]

Hi Charlie.  I know how you feel, and I gather everyone can understand how you feel because we have all been there!

 

The advice you will get here is a soothing balm to your mind ( it did wonders for me). I found that at 5 months out, I still couldn’t work my regular hours ( I am a preschool teacher). What I learned is that it takes a long time for the brain to heal.

 

You will get stronger, but you need to be patient with yourself.  Know that it is normal to feel anxious.  I tend to feel more anxious close to the anniversary date of my bleed (2 years on the 28th of this month).  I had to change my job as I found the classroom too stressful, and that was difficult after 30 years - but I am so much happier now,  Different can be good too ?

 

You are still healing, and learning your new normal.  I am pretty much back to my old self, but I know that there are times when the fatigue and fuzzy head will creep up on me, and that is fine too.  I just rest that day and if I need to nap then I do!  

 

I found visiting this community has helped tremendously.  I am sure you will discover this too.  Good luck in your continued recovery!

 

[Winb143]

Singing happy songs also Charlie no forgetting that  ha ha.  Cannot sing them on here as my Dad sung pub songs which always had a cuss word in it.

 

Be kind to you xxx 

 

Good luck  have a good Sunday xxxx

[CharlieD]

Thanks Patc it is nice to hear you are pretty much back to your old self. I can't wait for the sudden weird head stuff to stop. I find that massively impacts my anxiety levels, obviously. Sounds like after 30 years in a class room you have earned the break!

 

Thanks for the advice. I will listen to it all from every one. 

[Bev75]

Hi CharlieD,

 

I totally get where you are coming from, i'm coming up to the 5 and a half months since my SAH.

I too get these strange sensations in my head, which leave me feeling tired and not with it. 

I've been trying to pace my day as best I can. And also have begun the slow phasing back into work.

 

I had occupational health (a neuro doctor) speak with me and he did a report for my employer giving guidance for up to a year. I'm lucky that I work in the health sector in Pain Management, so i've had good support from my colleague. 

I started working from home, 3 days a week just doing 1 phone call per hour with a patient and have now gradually increased this to 2 calls in the hour.

 

This is all that I can manage at the moment, I take regular rests in between. 

My D day is tomorrow, I will be joining my colleague in a Pain Management Program with 10 people. This is a huge step for me, I'm just shadowing, just seeing how I manage the day.

 

The prospect of me standing up in front of people and delivering the program scares the living daylights out of me. I'm no where near that stage yet, i've got a very big mountain to climb. But I know just like you, we have to take one step at a time, rest when you can, taking life at a much slower pace.

 

Sending warm regards

 

Good luck with your recovery

Xx

 

 

 

 

[CharlieD]

Hi Bev 

 

I hope your presentation went well. I know exactly what you mean with the feeling tired after the head pain. It is strange how the brain can do such crazy things after a bleed and not knowing what is normal and what isn't. 

 

Sounds like you are making great progress. Do you mind me asking if yours was an NASAH or an aneurysm? 

 

I do have to keep reminding myself to drink more water, it's so easy to forget. 

 

All the best

Charlotte

 

[Crazy]

Hi Charlie,

 

Im pretty lucky I think, I’m at a bit over 4 months and have had minimal issues since about 2 months. I’m back a work now, powering on as much as they need me (I’m a casual but worked 10 days this fortnight). I get tired at times, more so than before especially if I have to concentrate for extended periods. Run a marathon no probs but if I have to think...

 

Stay positive is the best advice I can offer. I’m up and down a bit but as long as you just keep remembering it will take time and keep working at it, you’ll be giving your self the greatest chance at recovery. 

 

All the best

 

Dave

[Bev75]

Hi Charlie,

I had a NASAH, my recovery has slowed down considerably. I did try the presentation, only to find after 10 minutes, my eyes were glazed, fatigue had set in. My colleague was there to support me and continued the presentation. At least I tried it. 

 

I had my follow up appt with the neurosurgeon, he says there is nothing that can be done about the sensory overload. That the recovery period may take between 2-3yrs or longer and he's appointed a SAH nurse specialist. I had bloods taken yesterday, have a nerve conduction test tomorrow and awaiting a further MRA. He says that my Central and Peripheral Nervous System have been compromised, i've developed post stroke pain. 

 

Work have been brilliant, the pressure has been taken off me. They've said it does not matter how long it takes in my recovery, to just do what I can and no more. 

Slow and steady.

 

How are you doing with your recovery? Hope all is going well

 

All the best

 

Bev xx

[CharlieD]

Hi Dave, I'm glad you are recovering so well. 8 months now for me and am not sure I am where u r but hopefully one day. 

 

Hi Bev, I know what you mean. I feel like I go through phases where improvement stops then i see a small change. I felt that a few wks ago. Its like a rollercoaster.  I have times when I am feeling better but I do suffer quite badly with head pain and fatigue. It is such a change from how life used to be but my favourite line these days 'it is what it is'. 

 

I still think accepting what's happened and coping with anxiety is still one of the hardest parts. 

 

We must have had ours quite close together I was in Queens Romford, how about you?

 

 

[Bev75]

Hi Charlie, 

May bank holiday mine happened, where I was was transferred to the Queens Medical Centre in Nottingham. 

 

I know what you mean, Monday I had a really good day, today being Wednesday, glazed over, not retaining what is being said to me, it's like my brain had switched to go slow. 

 

My work colleague knows me very well as we work together. She knew instantly that I was not right today and to be honest, i've asked her to give me feedback on how she sees how i'm coping. Today she said that I was having dips of concentration and fatique, which were happening quite quickly, then i'd have a boost of energy and dip out again.

 

I had no idea that this was happening, but knew I was out of sorts, so sat quietly at the back of the room.

 

The SAH nurse left a message on my phone today to get in contact.  I think i'll be making that call today and see what they say.

 

I'm working from home for the next 2 days, much quiter and hoping for a better day. Charlie when did you have your NASAH? If you don't mind me asking.

 

Xx

Bev

[Coralann]

I am now 9 months post negative sah.   My initial symptoms have gone/improved.  However I am still suffering head/neck aches and extreme dizziness with fatigue. I have not yet returned to work as it does not feel safe for me to do so.

 

 I have just had an esa assessment which has deemed me fit to work.  How do they know what is happening to me just by working through a standard assessment.

 

Charlie, it’d be good to know how you are doing now as it seems about the same time we were both in queens, Romford 

[Super Mario]

Coralann, go for a mandatory reconsideration and if needs be onto appeal. Please note that those requests have to be put in within 30 days from the date on the decision letter.

 

Get help for your mandatory consideration and if needed appeal against the decision from a Welfare Rights Officer. You can find them by doing a search for your area. Try and avoid CAB if at all possible. Headway may have them or if you are over 55 Age Concern should be able to help. If there is any delay in getting outside help just ring them and tell them you want a mandatory consideration and that further evidence will follow which will give you time to find help

[Coralann]

Thanks super mario.  I never even considered that age concern may help me so I will contact them.  I am lucky to have a very good gp who is going to write a report as she has treated me since day one.   I am so disgusted with the systems which seem to treat you like a mh patient all of the time.  I have worked all of my life so why treat so badly and make you feel it’s all in your head

[Super Mario]

Actually, thinking about it, I knew something was niggling when I put Age Concern, they have changed their name to Age UK.

You are amongst many who are definitely not fit to work but actually found fit to work. If you have to go to Tribunal, most do as the decision is rarely overturned at MR, go in person which gives a more positive result.

 

Everything you send to DWP keep a copy and mark every sheet with your name and National Insurance number. Also, if you ring them make a note of who you speak to as well as date and time.

 

As this thread has gone off topic, my fault, I will put no more but if I can help you further on this matter just message me. 

[frmertd]

Great to hear you are recovering. 5 months out, i was a bit of a wreck. Lol. I had emotional issues, would get angry, then cry, it was weird. The problem with brain injuries is , to someone else, you appear normal. If you break your arm, you wear a cast. Everyone sees and understands. But with a brain injury, your strange behaviour makes no sense to other people and they blame you. That is my take. Maybe I should have wore a sign?????I also had sleep problems. They were frustrating. Good luck. I will pray for you.