I'm Deb. New member

[Deb]

Hi, everyone. I'm new here so allow me to introduce myself.
My name is Deb, married with 3 children.

I had my SAH on July 17th. I was running a bath and at firs just felt a bit odd, like I was watching the bath fill through a fog. I stood to turn on the cold tap and collapsed to the floor when I came around the bath was full! I tried to stand and realised my left side wasn't working, I felt (and heard) a kind of snap in my ankle and fell to the floor again.

 

Somehow I managed to drag myself downstairs to tell my husband. I was then suddenly hit with the most horrific pain in my head and was violently sick. Husband rang out of hours doctor who , after listening to my husband, phoned an ambulance. I don't remember anything else until 3-4 days later.

 

Spent 3weeks in hospital, had numerous episodes of numbness on left side, CT scans and lumber punctures. I was allowed home on the proviso there was someone at home to "look after me" Well, there was but it didn't last!

I have a 14 year old daughter who has suffered with anorexia for almost 3 years, I am her main carer and to say her illness is stressful is an understatement. Pretty much straight away I was back caring for her. It's very much like having a newborn, she is currently beginning to recover (finally) and she has a very strict meal plan.

 

So my day consists of watching the clock for the next meal, snack, shake etc. She is home tutored so I have a constant stream of people in and out of my home, between tutors, doctors, therapists etc.....  I really haven't had time to come to terms with my own illness, and I just don't have time for me.

I am still suffering terrible headache, noises in my head, (probably tinnitus) fatigue, poor memory, among other things and the thought of going out and seeing people fills me with dread. We are going for a meal tomorrow to celebrate me eldest daughter's new job.

 

I am dreading it, partly the being in public and partly because it's my first time to drive, only got my license back yesterday.
I look forward to being part of this community.

[Winb143]

My first time out was in a café with hubby and daughter Debs as he knew getting me out would do me good but I remember nothing apart from windows.  I used to get the sea running through my ears like  as a kid, when  you held a shell up to it. I still get the buzzing shhh  noise in ears but it is usually when I am tired or stressed.

 

You need to surround yourself with laughter (easier said than done) No listening to others problems but you are a Mum !! hard going xx

I sing when the ringing and buzzing gets too much or have a lay down.  My Surgeon said "No Stress" so I come on here and a majority of times it helps me to know I am not alone in this.  

 

Welcome and drink lots of water and sing  lol xxxx

Anytime you need to let off steam come on here xxx 

 

All the Best

Winb143 xxxx bbl after a nap lol xx let me know if you want a sing song  ha ha  xxx

[subzero]

Hello Deb, and a warm welcome to BTG.

 

So glad you made contact with this site that has so much to offer you by way of support and guidance. Any medical advice is of course left to your own medical advisors.

 

Deb, you don`t need me to tell you that your SAH has changed your life and lifestyle. I am a carer for my wife who had her SAH in May 2011, so my comments come from seeing how she has recovered and from reading the experiences of others on this site.

 

I think it is fair to say that with three children, one of whom is anorexic, your life pre SAH was extremely busy. Three months after your SAH, from your comments, it does seem that you are trying to make it `life as usual`. One of the most debilitating options you can take is try and maintain the status quo.

 

Your brain has been traumatised and needs time to recover and adjust.  To give yourself a realistic chance of recovering, you do need to accept that your brain and your body needs that time. Many on this site have initially felt that six months was a realistic time, however on hindsight, most would tell you that a year is more realistic. 

 

Even then, during that year you will be finding out the challenges SAH has left you with, and for many, longer term adjustment and acceptance plays a large part in your quality of life.

 

Winnie has said…`No Stress`  was her consultant`s advice from the outset, and plenty water. So important. My advice would be to have a chat with your family and maybe close friends to see how you can achieve this `no stress` so that you have the best chance to recover.

 

You do seem to have been granted permission to drive again very early post SAH. Perhaps you can comment on the original acknowledgement you received from the DVLA.

 

How are your daughters and husband adjusting to what has happened to their mum ? You mention that you just haven`t had time to come to terms with your illness. Please talk this over with your husband because you really do need to have that time.

 

You will find so much help from looking at the posts that are similar to your own situation, and feeling part of a community that understands your challenges will be a great help to you. I am sure your husband will also benefit from looking into the site.

 

As far as your husband is concerned, he too will be feeling his world has rocked. It was so good that he was around when you experienced your SAH. He too is trying to come to terms with how life has and will change because of your bleed.

 

Please keep in touch, and I wish you and your family well as you all adjust to what has happened. These early months are traumatic, but with patience and rest you will give yourself the best chance of progress.

 

 

Subs

[Deb]

Thank you both for your replies.

Winbe143, I wish I didn't have to listen to others problems hahaha... I have actually backed off from a few people who stress me out though and that has helped a little. I'll try the singing, though with my voice  think i'd rather listen to the odd noises in my head!  

Subzero, you talk a lot of sense, I will try to take some of your advice on board. I'm afraid my husband is very much an ostrich, he buries his head in the sand and hopes things will go away. He cares very much, but doesn't know how to show it. He's always upbeat and trying to keep the mood in the house happy but sometimes I don't feel in the slightest upbeat.

 

I feel very low and quite depressed and sometimes just want to be left alone. I think because I look 'ok' he thinks I am ok, and even though I've told him I'm really not he struggles to deal with it. He can't admit even to himself that things have changed, and I'm different now.

I am at home with my (anorexic) daughter all day every day, I literally don't get half an hour to myself.  This is just the situation we are in at the moment, it's no-ones fault, it just is what it is.

 

Before my SAH I would spend each Saturday with one family member out of the house, shopping, eating etc while the others stayed home to care for my daughter, but since it happened I really haven't felt well enough, or had the energy to do anything.  I'm hoping that will change sometime soon though  

With regards to the DVLA, I filled out a questionnaire and sent it off, they replied advising me to contact my insurance company and not to drive while they investigated my health, I did as advised.

 

They then wrote and informed me they had acquired my medical records from my neurologist and would contact me to let me know the outcome, that was around 6 weeks ago and yesterday I received a letter saying they were satisfied I was medically fit to drive.

I've read over this reply and my original post and it's all so negative. I guess that's my mind set at the moment, but my motto has always been 'onwards and upwards'

Thanks again.
 

[Lyn]

Hello Deb. So sorry to hear about your Sah, but glad you found this site so early. Its made a huge difference to me & a comfort to know others have the same/similar experiences. Its 7 months since by nasah, so still early days. But its really early days for you! You really do have to learn to try & put yourself first for a change (easier said than done, I know).

 

My youngest daughter has cerebral palsy & I'm her full time carer & its very easy to fall back into the old routine. Don't get me wrong, I'm back to doing everything again, but I do ask for help now when I need to. And if I cant do everything I don't beat myself up about it.

 

I too have distanced myself from a couple of needy friends. I was always happy to be there & take on others problems, but now not so much. Negative people you don't need!

 

My husband has been really supportive & he's probably sick of me saying I'm tired or got a bit of a headache. But the trouble is because I seem 'back to normal' he can easily convince himself that I'm all better.

 

I really hope that you can have a little respite from the pressures of everyday life, but please ask for help & try to explain how you're feeling. I hope the meal goes well, but I can well remember how daunting it feels to be out in public in the early days. Be strong & as you said onwards & upwards. Take care ?

[Winb143]

Good for you Debs,

 

It can be hard at times and I sometimes want to tell my family to Shut Up !! in no uncertain terms.   I bite my tongue lol.

 

When I first came out of cuckoo land after being ill with Ventriculitis and Sepsis after SAH.  Then had a shunt in head to rid me of hydrocephalus.  That is when I came around.  I think how lucky I am xx

 

Now Family moan at me lol.  Back to real life !!

 

Ask Hubs if he will take you for a coffee on a Saturday and try and get into a pattern.  No overdoing it though and when body tells you to sleep,

when possible have a rest xx

 

Wishing you Good Luck on journey back  with your head up etc etc  lol  and always go to sleep with a smile xxxx

 

 

 

 

 

[ClareM]

Hi Debs

While reading your posts I almost cried, my heart goes out to you. To be dealing with your own recovery post SAH and a daughter with problems such as yours has must be such hard work.

 

There is no way I could have dealt with that, I could barely look after myself for the first few months and relied so much on my husband and family. I think you need to try and get some help, for you, not your daughter, I can't believe that with all the outside agencies you have involved with your daughter that no one has thought about you.

 

I think the key person to this has to be your husband. He can't bury his head in the sand and leave you to cope with it all, that's just not on with all you have been through. Can you not sit down with him and explain what you have been through and how are feeling? You are different now and you may never be the person you were - I know I'm not and never will be. But you need to embrace the new normal and make allowances accordingly.

 

Maybe you need to get back to that Saturday routine, if only to give yourself a break. You don't need to shop or do anything else that assaults your brain.  Maybe just a gentle walk and coffee away from home, just enough to get you out and away from all that stress.

 

Please try and make some changes, it will be hard but I am sure worthwhile. In the meantime just keep coming back to BTG, we're all here for you.

 

Clare xx

[Sharlua]

Hi Deb you do appear to have a lot on your plate, appreciate how hard this is for you.  I guess we all have experienced times when, loved ones, colleagues, friends or others forget the impact that this illness has, particularly if it does not leave visible physic al difficulties.  My family were a little the same, I think not because they were cruel but I think mistakenly thinking this would challenge me to achieve more.

 

i do hope you seek as much support as you can for daughter although know she must be a real worry.  I am pleased you have found this site and hope we can all support you through this hard time.

 

Take care

 

Sharon x

 

[Deb]

Thank you all for your replies. It's actually very comforting to know there are people who really do 'get it' you know.....

My family do try, but as you all say, as I look ok, they assume I am ok. My husband and son work full time, my eldest daughter starts a new job in the next few weeks  so it'll just be me and my youngest. I think it would help if I didn't have so many people back and forth, but needs must and all that. They come for a good reason, I need to remember that.

A question for anyone who reads this.... Did your sense of taste change? Food I used to love I now can't even look at. A roast dinner was one of my faves, but now I can't even look at one without heaving. Peanut butter, coffee, wine, to name but a few things I can no longer eat/drink.

 

If this has happened to others, does it get better?  I've always loved our Christmas dinner. I don't think I could cope with watching the family eat theirs while I eat a curry or a bunch of grapes!!  

Hope you all have a great weekend.

[Winb143]

Hi Debs Pest Again,

 

Coffee,  I cannot stand anymore and weird smells also.  I can drink Costa coffee but instant coffee is yuk now !! I drink water and orange juice and long for a coffee but it doesn't taste nice.  No matter who makes it !!

 

Doc said it is in my head, I think it is called Olfactory someone correct me if I got it wrong !!!  My clothes smell, Lenor is a horrid smell now.

 

Going to buy some baby shampoo and look for milder cleaners/detergents see if that works.  Wish chocolate tasted horrid !! ha ha

Good luck

 

Win xx

[Skippy]

Hi Deb

I'm 10 years post SAH and my heart goes out to you.  I've always considered myself to be a strong person - to some even hard-faced - but my heart very much goes out to you with all you are having to cope with so soon after your SAH.

 

 My husband has a near fatal motorcycle accident last year and I struggled to mentally cope with the aftermath and all the telephone calls to insurers and dealing with the police investigation - so what you are dealing with right now so soon is amazing but also alarming.  

 

I agree that your family need to understand more about what you are going through right now.  On this site is an article called "A letter from your brain" - it might be worth getting them to read it.

 

 

 Also I found a fantastic saying that brought it home to a of my family members and friends - "I look well from afar but I am far from well".

[Louise]

Hey Deb

 

Warm welcome, glad you found us.

 

Great replies not a lot to add really.

 

So just one thing I too agree that you have to let family know what you are going through and just because you've got back on the doing stuff does not mean your recovered sometimes I suggest letting your nearest and dearest read some of the things on here to get a grasp of it....

 

take care honey

[Super Mario]

Deb, my sense of taste changed for a few months and all I could stomach was creamed mushrooms on toast, salad and smoked fish. Tea was foul but I could drink coffee with no problems. Eventually my normal sense of taste returned 

[Deb]

Hi Skippy. The letter from your brain really hit home. I plan on showing it to my husband at some point. There isn't a more important organ in our bodies than our brain, so we really should treat it with the greatest of care. It's not that I don't want to though, I don't really have time to at the moment. I'm hoping for a more relaxing week next week as it's half term, so less people in and out of my house.

Thank you for showing me the letter.

[Skippy]

Deb, sweetheart, this is about making time for you  not saying that there isn't any.  Your family need to understand that if you haven't recovered then you are no good to man nor beast!!  xxxx