Clare new member - Will I ever be the same again??

[ClareM]

Well here we go with my introduction. My name is Clare I am 55 and live in Portsmouth UK. I work as an Accuracy Checking Pharmacy Technician and I had a NASAH on 10 Feb 2015.

 

I was out running with a local group when I felt a headache come on (and I never get headaches), it got worse and moved round to my neck. I was with my sister and a friend and when we got to the 2 mile mark I said one of them would have to ring my husband and tell him to come and get me. That never happened as I then started vomiting and collapsed on the ground.

 

To cut a long story short I was taken to QA hospital Portsmouth where it was discovered I had had a SAH. This happened about 8pm, I was told I needed to go to Wessex Neuro in Southampton but they did not have a bed so I had to wait. I was then moved into a side room as an RTA came in and they needed the space. I don't remember anything of all this except being given morphine and telling them it was '######' and that it didn't work! (That's a pharmacy technician talking!).

 

Around 4.30am my husband started asking why I hadn't been moved, that's when all of a sudden things happened and I was transferred. Apparently when I got to Southampton I had an intraventricular haemorrhage and hydrocephalus and had to have an EVD inserted. All a bit scary for my husband and sons who were with me.

 

I don't remember much of anything of my first week at Wessex neuro, apparently I was awake and chatting but mainly rubbish. I was constantly asked by the nursing staff the usual memory questions which I sometimes got right and often wrong! Apparently I told them that the President of America was Barack Obama - well done correct!- then spoiled it by saying he had been to visit me the day before!

 

I was discharged home 2 weeks after arriving at Wessex told to take it easy, no work for 3 months and no driving until DVLA agreed ok. 

 

I have been at home now for coming up 3 weeks, my short term memory is still pretty bad but my husband says it is improving. I spend a lot of time just sitting staring which I find annoying as before the event I was a very active person. I regularly got up at 6.30am and did a 2 mile run with my dog and worked 41 hours a week - long hours - but in a job I love.

 

Today has been better, not so tired but still with that cotton wool feeling and wondering if I will ever be the same. I have been lucky as I have not had many headaches since being home but my worry is the fatigue, will it ever get to a point that I will be able to work? I am hoping to get help and advice from this site, I have read a lot of the postings and they have been helpful so far. I would particularly like to hear from people who had a NASAH and how their recovery has been.

 

Anyway, bit tired now - surprise surprise - so will look forward to hearing from some of you soon.

Thanks for reading.

 

Clare

[Janeyp]

Welcome Lovey ,it's very early days for you ,I had a sah 14 years ago when I was left partially sighted ,the fatigue lasted about six weeks but during that time you will start to feel better ,I had another unruptured aneurysm coiled two weeks ago and am feeling tired from that also.

 

I now have two remaining ones 7mm and 10 mm which are being monitored ,please rest and relax and know that you will get better ,previous to my last operation I worked four days a week in our family business ,ran a large house with hubby ,two teenagers and two dogs and felt totally normal ,much love and thinking of you xxxx

[Tina]

Hi Clare a very warm welcome to BTG

 

I did not have a NASAH but the recovery from a bleed in the brain is very similar.

You are still in the very early stages and fatigue is something that we all seem to suffer from, especially in the first 6/12 months when your brain is mending from a major trauma.

 

The cotton wool feeling will get better  its learning to pace yourself, rest regularly and listen to your body. 

Its very easy on a good day to overdo things and then pay for it big time the next day or two....we have all done it lol

 

I am sure others on here that suffered an NASAH will let you know about their recovery.

Take care & look forward to hearing more from you.

 

Tina xx

[Winb143]

Hi Clare,

 

I had an SAH and remember only little bits. 

 

In a way I'm glad I don't remember much as it would have been too much for me.  Plus I remember using

strong language to Nurses. !!

 

But I was told by the surgeon who operated on me that I must not stress about things.

 

So I handle it by singing and being happy most days, unless the waterworks start up.

 

You will get good days and bad ones but eventually you will look back and say "I had a good few days then"

 

They become more often the good days, but it takes a long time so never give up and keep smiling for

your family xx   Good Luck on your recovery and don't overdo it.

 

I'll sing you a song when you feel well.    Wow now there's something to look forward to ha  !!

 

All the Best

WinB143 xx

[kempse]

Hi Clare,

Welcome to BTG - I'm sorry that you have suffered a sah though. At least on here, you will be alongside many others who have also had one, so have a good idea what you're going through.  

 

I laughed out loud at you Barack Obama comment!  It gets a bit much when you have to start naming the heads of other countries!

 

In relation to recovery, you are in the very early stages. Each recovery is unique, but fatigue is a very common issue. Just be aware that it could take many weeks, possibly months to get near to pre sah levels - I had many relapses whereby I'd have a few good days with good energy levels followed by days where I could hardly do anything and ended up sleeping for several hours during the day. (I managed not to fall asleep on the days I was at work though - but only just!)  

 

Unfortunately, it's not possible to predict how long the fatigue or the cotton wool feeling will last, but having suffered both, I feel confident to say that it does improve greatly albeit with plenty of time and rest along the way. I also know this combination is easier said than done.

- I wish you all the best.

Sarah

[Mandy Wright]

Hi Clare,

I'm so glad you posted your introduction here. I know you're worried about the healing process but try to relax a bit. I had a SAH just over 12 weeks ago and things have improved for me so much in that time. There's still room for further improvements but I continue to count my blessings. I'm still here and feel so lucky. Leslie, the neuro nurse from Wessex said it can take a year or more to get as good as I'm likely to (rubbish English, sorry) so I must be patient. I suspect the same will apply for you but things really do improve so much in the first weeks I think you have room for optimism.

Are you going to the Wessex support meeting on the 28th? I'm hoping to get there but rely on my other half for transport.

Keep posting with updates and before long you will be able to look back and see signs of progress.

Mandy xx

[Chelle C]

Hi Clare  I am a new member BTG and I have found lots of helpful advice here I had my SAH 9 months ago and I still have good and bad days.  Don't try and rush things like Tina said listen to your body your brain is still trying to recover from the trauma and that can take time its very early days for you yet I still have cotton wool head but am told in time it will settle down. Good luck on your recovery journey don't be so hard on yourself. Best wishes. Michelle xx 

[ClareM]

Thanks to everyone for all your comments and advice. I know I have to take it easy but I find it so hard just sitting most of the day. Is this normal or should I be doing more? I try and do at least one thing a day and so far have achieved that but wonder if maybe I should be doing more and not spending so much time on the sofa.At what stage did most people start living a more 'normal' life?

It sounds like I have been lucky compared to some of you so I must stop moaning and thank my lucky stars for what I have got.

Maybe I will have to start singing like Win - I was always known a work for my terrible singing voice (which they say they miss!!) lol!

Thanks everyone

Clare

[Super Mario]

There are no hard fast rules about returning to a "normal life". Everybody is different.

 

I started out very slowly as you, just doing one thing a day and eventually added something else. If I didn't manage just took a step back for a while and tried again. Just like building a wall, add one brick at a time, albeit very slowly. Your body will tell you when enough is enough. As folk say, baby steps all the way.

[Winb143]

Clare,

I have trouble walking plus if I sit too long I get a numb b*m lol

 

I am walking, but slow work as back aches so much.

 

Never give up, I was told I would never walk,  but slowly and with my big botty sticking out I am getting there.

Only a little way but  hopefully I'll get there. !!

 

Good luck and remember smile xx Bet you have a good voice xx

 

Love and Good wishes

 

WinB143 xx xx

[rob.com]

hi clare,glad to hear your ok,you will feel better,takes a while.

had my sah last year.like you was fairly active.

have managed to get back to work.find the fatigue is the worst to deal with.

you just have to pace your self and rest when you need to.

[Macca]

Hi Clare,

 

Define normal!  What is normal and by whose standards? The way I look at it is, normal is what I want to do today, If I feel active, I am active, if I feel docile I slouch.  Normal is a benchmark you set your self.  Re-draw the line and take the pressure off.

 

Go with the flow and listen to your own body.  It takes its own time anyway.  Relax and enjoy the ride.  Frustration is only a problem if you let it be.

 

You have time now. Use it wisely and do what you can when you can.  I find that to be the best  approach.

 

Best wishes,

 

Macca

[Daffodil]

Hi Clare. I used to Write down goals at the start of each day and tick off when I did what I hoped to that day, as Super mario says, start small and celebrate everything, yes even getting up, getting dressed, it helps you track what uses up energy and brain power differently to how it did previously but let's you look back and see progress and what you make. Use a little book that makes you smile!

I believe the brain undergoing healing requires massive energy and space because it's trying to run the rest of the body at the same time so learn what are your signs that you are overdoing it in the early days and that will help you in the long run. You had a bleed and a major brain procedure with the EVD so Feel no guilt at your sofa time. Yes stretch, yes do things but in moderation with rests in between.

Be kind to yourself, that's my mantra. I'm sure in your role you require great empathy. Turn that on yourself. I definately think it's okay to join the slow movement post a bleed on the brain and investing in your healing now and finding a pace that helps support your return to health is worthwhile.

Look forward. You may do things differently in future , you may not but only time will tell, you may regain everything you did, you may find things have change, you may choose to do things differently, you may learn you want different things, it's all ahead of you and take your time.

Take care now and keep drinking the water!

[iola]

Hi,

Will you ever be the same again? How can you be? It's a tough question. I am almost two years and my dr told me to make no mistake this was a life changing event and to not measure myself on who I was before. I'm still trying to figure out who or what I'm supposed to measure myself against now! . You will have days of frustration and some of enlightenment and some sad and some angry. The whole gamet of emotions.

You will feel like you have jumped forward and then fallen backward. You will find yourself inching along and realize you are not who you once were, but, maybe that's okay.

Take care and be kind to you.

[Winb143]

I found I was truly loved by my Family, 10 of us and my Sister used to come up hospital and sing while

some found it hard going to see their Sister all tubed up and not cracking jokes.

 

My Daughter was so good to me but you must make the most of it.

My hubby is back to moaning at me and my daughter !! cheek.

 

Just let your body tell you when you have over worked and keep smiling no matter what.

 

Now rest clear throat and get ready to sing a really Happy Song !! 

Keep Well.

 

Love

WinB143  xx

[Gill C]

Hi clare, another wessex lady.

Margaret is the only.other local nasah survivor I know but she's rarely on here. I know she is working again and although it's a new normal she's enjoying life much the same as she did before.

I think for most of us fatigue is an issue. It improved greatly for me in the first couple of years but it will still hit if I push too hard. We're going up north in September to see friends and I know I have to plan in quiet time and breaks from all the noise and movement (I'm 5 years post clipping on an unruptured anni). You will learn to recognise the signs and head them off by having a rest.

Hopefully we will see you at the next Wessex meet,very useful to meet other survivors.

[Louise]

Hi Clare, warm welcome.

 

It takes a long time - but things will get better sometimes you don't notice it but others do... 

[ClareM]

Well, I did ever wonder if I would be able to go back to work and tomorrow that day will have arrived. Only working 3 hours but I will be back. Wasn't sure if I would ever get to this point and am hoping it will be ok. I am a little nervous and a little excited, back with all my friends doing the job I love, just hope the brain will allow me to cope with it all.

I have followed other peoples return to work, some positive and some not so. Hope mine will be ok, I am lucky that if it is not, my boss alias my best friend, will intervene. Love her, she has said if I am back full-time  by Christmas she will be pleased. I am hoping I will please her and be back before then. Keep your fingers crossed for me fellow BTGers, I will keep you posted.

 

xxx

 

p.s Win,

 

I'm so excited and I can't just hide it

I'm about to lose control and I just can't hide it

?? xxx

[kempse]

Good luck

[subzero]

Well done Clare-

 

Wishing you well - getting back into the work environment will give you a tremendous boost to your confidence if your timing is right- rest well and often in your times off-

 

Take care

[Mandy Wright]

I hope today went well for you Clare. Rest up and enjoy the weekend.

Mx

[ClareM]

Hi Mandy

 

Went well today, managed the 3 hours but was glad it was no more. Felt fine while there but boy have I felt it this evening. I didn't think a few hours work would make me feel so tired. Two 3 hour shifts next week then three the following depending on how I feel. 

I did feel a little like the new girl but everyone was great and it was almost a relief to get the first shift out of the way.

 

How are you feeling now? Hope you have some lovely plans for your break next week.

 

Clare x

[SarahLou]

Hi Clare,

Well done on your first day return to work. You did it!

Hope you got the pm I sent you yesterday?

It makes such a difference when you're working with a great team.

A three hour shift is an amazing achievement, be very proud of yourself.

Hope that you're resting this evening and have a lovely bank holiday weekend.

Take care,

SL Xx

[Winb143]

Well Done Clare xx

 

I'm so excited and I just can't hide it ~Good song wasn't it. 

 

Now you can do it, have a coffee break every 20 minutes j/k xx

 

Do what you can no more no less xx You'll be fine as I have faith in you.

You are a go getter and a song for you while at work,  "when the tough get going the going gets tough"  Whoooo  hoooo.

 

Love ya Clare and Keep Well and don't overdo it xx

 

xxx Win  xxx

[subzero]

Hi Clare

 

Do you start your two day shifts tomorrow ?

 

Hope they go well- and as you know-  rest- rest and more rest when you are not at work-

 

Keep strong-