Adjusting mentally

[Carolyn250]

Hi it’s me again - sorry to bombard you all with questions!

 

I’m now 6.5 weeks (not that I’m counting lol) post a NASAH. I have no side effects physically so feeling very lucky. I am finding the speed of recovery a bit challenging as I’m a get up and do person and sitting around isn’t really me. I have however become best friends with daytime TV (arghhhh!) as I simply can’t sit and do nothing.

 

My question today is how you managed with this whole thing mentally. I don’t mean the anxiety attacks that wash over me unexpectedly but the whole thing about what just happened to me, what the future holds ie will I get back to normal? And how I regard the future.  

 

A friend asked me if I had had an epiphany moment....a phew that was close I’d better get on and live fully going forward and make most of my time.  I said I was as deep as a puddle and no I hadn’t really.  Thing is the fatigue means I’ve lost my mojo a bit. Although if I’m truly honest I think I lost it before the ‘event’. But the event should really be a wake up call!!

 

I need to lose weight (about 2 stone would be good) but have battled with that all my life so why should this make any difference? I need to change my thought processes whilst recognising that this recovery could take longer than I ever imagined.... I imagined about 3-4 weeks tops cos no one told me any different lol - ever the optimist me!!

 

I’m sure the answer is pace yourself, be kind to yourself and just focus on recovery but for me part of recovery is this whole mental thing too.

 

What did you do?  Did it work? Any ideas or tips or thoughts much appreciated.

 

Onward and upward

 

Cx

 

[Macca]

Hi Carolyn,

 

Great question.  I'll answer from my own experience and I'm sure others will add theirs.  firstly 6.5 weeks is virtually nothing in recovery terms. Months and years is more the order of the day.

 

What I did, and it was completely wrong, in my opinion, with hindsight, was to set myself a goal of getting back to normal.  What's wrong with that, I hear you ask?  Well, what was 'normal?'  In my head, It was back to being the old me, where I was the day before I had the 'event.' 

 

But then, that was all I knew. I realised later that was never going to happen.

 

What I failed to realise when I woke up, was that this was the new me and was the new normal. I just had to find out what that was, and what it meant, for me.  

 

If you look at old photos of yourself, you see big changes in yourself that you took in your stride as they happened over time, almost without you realising. It was only when you looked at the photos you realised how much you had you changed and you probably had a laugh about it with your family and friends.  At your haircut, your height, your weight gain or loss, your shoes, the car you had then as opposed to the one you have now. They all evolved over time.

 

What you have now is sudden change foisted upon you, in a surprise attack that damaged you, but didn't finish you off.  You survived, and what you now have to do is take stock of what happened, how much damage was done and try to adapt and get on with life as best you can. 

 

To put it into a context, think of any military conflict where a commander has insisted on a surprise attack and what the response was. The Japanese commander, Yamamoto, planned the attack on Pearl Harbor in WWII.  They surprised the fleet there.  The American response was to dust themselves down, assess the damage and set about repairing themselves ready to strike back.

 

All the battleships were sunk, but they survived the attack and planned their return strike by using what they had left - the aircraft carriers!  This might, at one level, sound absurd, but what I am saying to you is that you have suffered a surprise attack on your body, you have survived, you have to assess the damage done, and you have to find a way to strike back by getting on with your life, adapting to what you have left of your faculties, bodily strength, circumstances and so on.  

 

You will find what your new boundaries are by assessing what you can and cannot do. Those you find difficult you will delegate, or avoid, or change. but you will adapt. You will find what works for you.

 

You mention several things in your post. This is how I look at them:

1 Your brain was attacked

 

2 You survived and got that 'wake up call' and still have your optimism (a great tool in these circumstances)

 

3 You recognise you are overweight so you have started to assess - now find the right diet and exercise regime with the help of your doctors - maybe that will help you get your 'mojo' back

 

4 You have realised recovery takes longer than you anticipated - so plan in the time to give you the space to do that

 

5 You have friends and family - use them to help you in your recovery - you will be surprised how many people will want to help - but you have to let them know you need that help - so tell them - all you need to do is ask!  You can't live in splendid isolation all the time.  Look on it as how much have you done for others - now it is time for them to give a little back - so lose any guilt complex you might have after being independent for so long.

 

6 Keep a diary and write things down - including progress and your assessment of where you are, what you need and where you want to be. review it regularly.

 

Embrace the fact that change has happened, deal with it and move on. Learn from the past but don't let it rule you.  It sounds harsh, but it is reality and like it or lump it, none of us can turn the clock back.  yes you may need a period of recuperation and going through the 'Why me?' phase, but eventually we have to get on with it, so make the best you can of it. All our journeys are different in some way, so why not make it as fun and as useful as you can make it?

 

You have a positive and optimistic attitude - that will make a big difference. Life is worth living, making a few adjustments won't change that in your case.

 

I hope this helps,

 

Best wishes,

 

Macca

[Swishy]

Macca...

your words are so inspiring "sudden change foisted upon you, in a surprise attack that damaged you, but didn't finish you off...

 

Carolyn amazing words from Macca, I am 3 years 4 months from my SAH and Vasospasm.  What I wrote above from Macca is exactly how I felt, i was surprised (shocked) but it didn't finish me off.

 

Carolyn you are still in the early days of this, I know you know that.  I had no patience for the slow movement of my recovery and pushed hard to do some things that made me feel in control.  I had this visual in my head thinking I wanted to see it in the rear view mirror...haha, I don't know why but that seemed to make sense to me.  It has moved over to perhaps my side view mirror but it is not standing in front of me anymore.  

 

I will talk a bit about the fatigue, I simply must surrender to this on occasion.  I find if I continue to push I start feeling a bit out of control of everything...I have made it a priority, sometimes I just need to sit down for half an hour, sometimes I need more.  

 

Dealing with it mentally has also been a slow process for me but I continue to learn to be good with myself.  I did go for some mental health therapy and it was helpful...A good session of visualization makes me feel content inside...I practice at home now...

I wish you the best Carolyn, please come and post whenever you need to or want to, we all share something here

xx Jean

[ClareM]

Hi Carolyn

 

I too am a get up and go person and to put it straight I have struggled. Like you I had a NASAH with no physical deficits but the mental toll has been huge. I have gone from being a high functioning individual to someone always questioning my judgement and ability. Changed my job 3 times since bleed and reduced hours from 41 per week to 22. 

 

Fatigue is much better now but memory still bad - I appear to have lost the ability to pay attention and therefore often can't remember what I have done 5 minutes ago. My saviour has been my neuropsychologist who has nursed me through the last 4 years - metaphorically speaking.

 

All that said though, I am physically fit and regularly run 15 miles over a week, physical activity isn't a problem.

 

You are so very early in your recovery - take it slow and steady and you will in time find your new normal. To be honest I'm starting to accept mine at last - I think  

 

Clare xx

[Carolyn250]

Thank you all for your replies. It’s always very reassuring to hear from people further on than me.  Did anyone get any mental support and if so what? NHS or private and did it help a little or a lot? 
onward and upward 

[ClareM]

As I said in my last post my Neuro-psychologist has been my saviour. I was referred to her over a year post bleed as I had fallen through the follow-up net when discharged from hospital. I have been seeing her for a few years now and it's all been on the NHS. Her main goal is to settle me into work again but that has involved a lot of mental support too.

 

I believe there is a confidential helpline you can access through Headway. May be worthwhile looking at their website for some info.

 

Good luck xx

[Carolyn250]

Thanks - I’ll see if there is anything like that for me. Covid has made things more tricky it seems. I’ve had next to no support apart from 3 x 10 min phone calls from a GP who’s never met me. Still no follow up from hospital

[Carolyn250]

Also does anyone else get this. When someone comes to see you they say how much better you are looking and stay for a cuppa etc for an hour or more. I can most often chat fine with people and if I start to get tired they don’t always see it. Just remark how well I look. I feel they think I’m fine but inside my head is a different matter. It’s buzzing/tiring etc. I wonder if people think I’m putting it on because I look well. Inside vs outside??? How do I explain that?

[Louise]

Hi Carolyn, yep I get that looking good outside doesnt follow you are inside, so get that....

 

When I was in the Rehab I got psychologist support that continued a bit when discharged...  

 

You are early in the recovery process remember its the Brain (not a broken bone), keep hydrated, and know that we really do understand...

 

Take care, stay-safe...

[Skippy]

2 hours ago, Carolyn250 said:

How do I explain that?

 

I found this line did the trick "I look well from afar, but I am far from well".

 

The problem is you can't put a bandage or a plaster on your brain for people to see.  Explain to them that if you'd had a heart attack, then people would be telling you to rest and take things slowly.  Well the fact of the matter is, your brain has had a "heart attack".

 

I soon realised that the best thing for me was not to worry about what people thought, but how I felt.  I'd tell people that I was fatigued as this was a result of the SAH and that I needed to rest - it really is up to them to deal with, not you - your main priority is getting you fit and well xx

[Carolyn250]

Thank you all so much for your replies. Your support is massively appreciated 

[Daffodil]

I found early on the best way to explain was to simply explain I now need to give my brain some time out and  space to heal carefully and that means being quieter than I was before, avoiding over stimulation and ask for their Help and consideration.

 

Say to people you are going to need to take regular breaks , don’t worry about giving yourself timeouts essentially, and to be honest cut yourself a break of whatever anyone else thinks. Who cares. You are here and just celebrate that and yes, be kind to yourself.

 

The shock of this event, forced upon on takes a long while to sink in I think. Do get help. I’d phone headway, they were brilliant for me and I had a support worker , I also had Neuro psychology assessment and then therapy sessions which helped tremendously. 

 

I wrote a diary and celebrated what made me happy each day .

 

You mention losing weight ,ask for some help with that from headway as main thing I say to eat well and regularly as your brain is needing massive energy and good sources of minerals, so look at your diet and try and walk each day. The two things combined may help with both how you feel, you’re mojo, your health goals. See how it feels though and don’t overdo anything. 

 

Go steady. Early days. X

[Swishy]

Daffodil,

I wish I had done a diary..I think it would have given me better visualization of my progress..

Jean

[Macca]

No time like the present Jean - even if you start one now you will see changes over time - they might not be a dramatic or as pronounced, but they'll be there for sure. 

 

Good luck! Well worth doing!

[Louise]

Start it now, bet you notice the changes in time..

[Chris G]

Hi,

 

Recovering mentally can be challenging.  Dealing with memory problems, headaches, and some down periods seems to be the norm.  I think the largest issue is "why did this happen and will it happen again".  I was able to overcome that concern with research that shows statistically that I am at no greater risk than the general population for a NASAH.  The fact that I had one doesn't increase the odds (again statistically speaking, since the underlying cause of my NASAH is unknown). 

 

Eventually, I attained the attitude that I had a problem that I did not know existed.  It happened and has healed, and now I am better than before because the issue is gone.  Hopefully, this kind of thinking can help you too.  Stronger now than before!  I admit I still get concerned when I get those sudden sharp headaches that only last a few minutes.  But I have heard this is common too, so I just ride them out.

 

 

Stay well,

 

Chris

[Crazy]

I think time is the thing that helps the most. I know this sounds horribly cliched but I think it holds true.

 

I had my 2 year anniversary just recently and it’s just a case of keeping heading in a forwards direction. I found learning as much as you could helped me through the early days. Like a lot here I found you weren’t given heaps of information initially.

 

My neurosurgeons weren’t great at explaining it but the neurologist was heaps better. Guess I was lucky to get a blood clot as well! It’s a minefield but we are all here to try and help you with a safe path. 
 

Dave

[V.Mama]

Hi Carolyn, My husband had a subarachnoid haemorrhage in May 2019.  At 6-7 weeks post bleed he was still very frail, struggling with overwhelming fatigue and headaches, and uncertainty about his future.  Some things we did together which helped were doing cryptic crosswords, to help keep his brain active, and going on short walks to help build his strength.   We had to keep the home calm and not too hectic for him, with minimal noise and demands on him. 

 

Your comment about visitors not able to see you fatiguing is because brain injury is a hidden condition, you actually need to let people know up front that although you look well your brain is still very bruised and you tire easily, so give them a time limit for visits and don't feel you need to be polite.  We used a system of putting a note on the front door so visitors knew if my husband was sleeping or resting.  

 

I know you will find so many people on here to support you and share their experiences and stories.  I am personally so very grateful for this website, it gave me hope in the early days when I didn't know what to expect or even what to hope for, and we didn't know any survivors of SAH.  The people you will speak with on here are some of the most generous, kind and compassionate you will encounter.  

 

And the great end to our story, is that my husband Terry recently returned to his work as a locomotive driver, after over 12 months away from work.  He spent a lot of time in his year off focussing on health, he joined a cycling group and made some great friends, and he started running.  He will work a part time load to make sure he still has time to enjoy life, and pursue his fitness which he loves.  

 

I wish you all the very best in your recovery.  It might be 2 steps forward, and one step back, for a while, but you will improve.

 

Veronica

[Doonhamer]

Hi Carolyn,

 

Embrace the sleep to cope with the fatigue.  Don't feel guilty about this as it's the only thing that will help you get better.  I started sleeping for 12 hours each day, and over 18 months later I can get by with less sleep.

 

If you want to lose weight, you don't need to stop eating.  I found out how to lose weight in a strange place starting from a month's unconsciousness and starting eating from scratch.  When I'm not at work, I eat what my husband cooks, using low carbohydrates and avoiding any processed food.  Eat plenty of meat/fish and vegetables, but very little potatoes or brown basmati rice.  I don't eat *any* white flour or sugar or ready-meals.  Cooking Indian food is fantastic, loving any lemon or vinegar added (Madhur Jaffrey has great easy recipes).  Eating a huge curry with vegetables doesn't require a large brown naan or very little rice.  I can eat any amount of oils or cheese!  

 

This article by Joanna Blythman is pretty good (ignore any politics) as she is spot on with what happened for me.  I have lost 5 stone by only changing what I eat rather than how much I eat.  I hope that this will help you lose weight too.

https://www.heraldscotland.com/news/18629243.opinion-joanna-blythman-want-stay-fit-healthy-ignore-boriss-bad-advice/

 

Fiona xx

 

PS I had always failed with the Atkins or 5 day diets - they were awful - but this one does work.

 

 

[Carolyn250]

Hi all

and thanks very much for your wise words, advice and support. Really appreciated.

I'm now day 65 and there are some changes.

I managed to track down my consultant as follow up appt at 8 weeks was never going to happen because of covid.

I decided it was better to pay to see him rather than wait.  Too many unanswered questions.

I had 30 mins with him on a video consult and he didn't charge me. Nice man. He said the chat we had was what he would have done at a follow up. So I felt re-assured.

In summary

• My various symptoms ongoing were to be expected. Headaches, fatigue, tinnitus, weird twinges and twangs etc
• He expected I would be better by Xmas 2020
• I was ok to drive again and there was no need to tell the DVLA retrospectively
• My bpm should never go above 120 for rest of my life. Not sure when they historically have but it means I have to take exercise steadily to build up fitness but he did say I would be able to run again if I did this.
• I was now twice as likely to get this again but since UK population were 1.5% likely to get it, that means I had 3% chance - so not too bad!

I also spoke to a lady at Headway the brain injury charity. She was very sympathetic, a bit vague but she did send me a leaflet about fatigue which explains that brain fatigue is different from bodily fatigue in that rest doesn't refresh it but that rest is very necessary all the same. She also said that doctors say 6 months but that in their experience, the biggest quantity of improvement is seen in first 6 months, thereafter improvements continue but at a much slower rate.

 

Last week I feel like a turned a bit of a corner - i feel more like myself than i have since this happened and that is a lovely and hopeful feeling.

I find that I can do more and for longer before i need to take a break - this is probably the most perceptible improvement yet.

I have learned not to feel guilty about saying no I can't - but I do still feel a bit lazy so maybe I do still feel guilty after all lol.

 

You guys have been the greatest support for me and I thank you all from the bottom of my brain stem!

 

Onward and upward

 

[Bri]

On 27/08/2020 at 16:17, Chris G said:

Hi,

 

Recovering mentally can be challenging.  Dealing with memory problems, headaches, and some down periods seems to be the norm.  I think the largest issue is "why did this happen and will it happen again".  I was able to overcome that concern with research that shows statistically that I am at no greater risk than the general population for a NASAH.  The fact that I had one doesn't increase the odds (again statistically speaking, since the underlying cause of my NASAH is unknown). 

 

Eventually, I attained the attitude that I had a problem that I did not know existed.  It happened and has healed, and now I am better than before because the issue is gone.  Hopefully, this kind of thinking can help you too.  Stronger now than before!  I admit I still get concerned when I get those sudden sharp headaches that only last a few minutes.  But I have heard this is common too, so I just ride them out.

 

 

Stay well,

 

Chris

 

Great advice Chris. It stopped me being paranoid about it happening again and really helped me in my early days of recovery.  

Brian.