I'm new to this! - Midge

[Guest Midge]

Hi,

This is my first post.

I had my haemorrhage just before New Year. We were due to go to Scotland driving my husband and I. Apparently he went out to get petrol and I was getting together everything we needed. When he returned the vaccum cleaner was on and I was collapsed on the floor. I am not aware of any of this.

He called the ambulance immediately (which saved my life) and I was taken to hospital with only 2% of survival. The hospital that I needed to go to for surgery would not accepy me until my signs were healthier. Which was of course the case as I am still here now.

I had the Operation and then went to another hospital for rehab. 2-1/2 months later I have come home.

I am able to walk fairly easily now but still not ready to go to work. I find that I get very frustrated as I cannot motivate myself to do anything. My hair is also coming out every day which I find pretty hard to deal with as that was always my saving grace.

All of my friends and family really went through the mill whilst I was unaware of anything. The problem is that my husband and family had a falling out during this time which doesnt really help matters. They all think they are right and I am stuck in the middle.:confused:

Lisa

Tonight I am going to my first headway meeting and I'm not sure what to expect.

[Karen]

Hi Lisa and welcome!

It sounds and though you've had a tough time .... as for family matters, then I would say that those that are fit enough to deal with it, should do so, as you really don't need the stress .... the main thing is, that you're alive and kicking and whatever went on before needs to be settled, without you're involvement ..... we all know on this website, that the outcome could be a lot worse and life is too short to bear grudges, especially when arguments happen at times of stress, when nothing is normal.

As for your hair .... that happened to me too .... I was told that the hair can thin around the area where it was coiled ..... but stress and shock can also play a part. When you next see your GP, mention it to them. My hair has got a bit thicker and certainly a lot better than it was .... so there is hope!

However, it is unfair if you're playing piggy in the middle with your family and it's something that they should be dealing with, as the added stress won't do you any good and your recovery is the most important thing to deal with, at this time. Hope that you stand firm ..... get a little selfish and think about you .... they shouldn't expect you to deal with it and your recovery should be the most important factor.

Good luck with Headway ..... I've only heard good things about them and I'm sure that you will find it beneficial.....xx

[Guest Midge]

Thanks Karen, its nice to speak to people who understand. How long was it before your hair stopped coming out? I am going to the doctors tomorrow so was planning on definitely mentioning it.

Just seen that you had yours a few years ago, I was coiled as well. They apparently went in through my groin.

Did you go back to work and if so how long after it happened? I drop salary to 60% next month which will prob be a shock to the system especially as my husband is self employed!!

I'll let you know how Headway goes:-D

[Louise]

Hi Lisa

Warm welcome to the site....

Agree with Karen re you family matters you definatly dont need this. the last thing you need is stress, maybe you should remind them of that.....

You'll enjoy headway they're great only good things about them....

take care

[rod123]

Hi Lisa, and a warm welcome to you, sorry to hear about your probs but sounds as though recovery is going well Best wishes Rod.

[bogbrush]

Hi Lisa and welcome to behindthegray

It seems like you are making steady progress, but I'm sure the added family stress is not helping. Take some time to have a look around the site. There is lots of useful advice here. Anything you want to ask, go ahead, there are many good people here who will try to help you. Look after yourself.

[Karen]

Hi Lisa,

My hair dropped out for quite a few months ..... my coiling was at the back of my head and more hair loss was noticed around that area. I also had general thinning of my hair for perhaps a couple of years .... However, it's now picked up and it's a lot better than it was. I was also found to be calcium and iron deficient after the SAH and the supplements that I'm now on, seem to have improved things. I believe that thyroid and iron deficiency, doesn't help, so mention it to your GP and hopefully they'll do some blood tests for you.

I was self employed pre-SAH and didn't manage to go back to work on a full time capacity (marine engine sales) .... I tried at about 3 months, but I had a warning or sentinel bleed at 38 and then this SAH at 42....so, it was a double whammy for me. I do occasionally fill in for holidays etc., but it's not very often. I also feel that I made a lifestyle choice, as not to do the headless chicken thing any more .... The drop in money was the absolute pits for quite a while and it's not been easy, but we've managed it.

Wishing you the very best of luck and hope that everything works out for you ....

Everything seems to work out in the end....... xx

[Guest Midge]

Great thanks, sorry I didnt quite understand. What was the first thing that you had as you say you suffered a furtthe bleed?? Everything I have read said it is unlikely to re bleed!

Have already started taking centrum - multi vitamins but only just. I'll probably be bald before anything starts working;-)

[Skippy]

Hi Lisa

Welcome to the site and to the family.

Sorry to hear that you're caught in the middle of a family fued - you definitely don't need that while you're trying to recover. i agree with Karen - get a little selfish and remind them all that you've not exactly had a walk in the park, life is too short etc etc.

Hope all goes well at Headway tonight.

Look forward to getting to know you more.

[johntaras]

Hi Lisa,

welcome to this wonderful site of like minded people.

Having read your notes so far we have a lot of similarities.

I had my SAH in November last year, no recollection of the day or following seven weeks. I had a secondary bleed behind my left eye at the same time. They found a rogue annie and coiled it via my groin just like yourself.

Isn't it a marvellous thing they can now do to save our lives:roll:

I also suffered from water on the brain (hydrocephalus) which sent me away with the fairies until I had a shunt put into my head. Now when I watched that operation recently on U Tube it blew me away.

Like a lot of people on here going back to work is an individual thing. You will know if you can cope or not, do not go back before you are ready.

I know financial stress has a bearing, my salary is already at half pay and will stop in less than four weeks. I am in the process of completeing the lengthy new Employment Supplement Allowance process that replaces the old Incapacity Benefit for long term sickness.

I see that your husband is self employed, my wife does not work and we are going to the CAB for advice on claiming DLA.

I am lucky unlike you that my hair has not fallen out but has gone a lot greyer.

You are still very early in your recovery as you will see blogs from people who have several years experience of coping and recovering.

You have got to be very selfish and think primarily about yourself. Any disruption by family and friends does not help your recovery. You mention that they went through the mill while you were ill, this is true but you had no control over your condition, they had a choice in what they said or did. Yes it was hard for family watching you ill but ultimately you need their support not quarrels.

Fatigue is a common factor we all suffer from and lack of motivation. You have been through a life changing and nearly ending experience. Do not push yourself too hard too soon.

Its great to meet you, I look forward to more comments from you, take care.

[JayKay]

Hi Lisa and welcome to BTG! Glad you have found us. I would like to echo what John and Karen and the others have said. You need to think about you!

As for money, I was a temp when this happened, and my partner (who is a contractor) had no work so we've been through the mill financially. I claimed ESA when I was in hospital: my partner filled in most of the form with the lady at the Job Centre. Luckily (for us) her husband is disabled so she kind of knew what to put. I've just claimed DLA with the help of someone from Age Concern (I'm only 50 but I volunteered with them so they said they'd help). No idea if I'll get it but she did say to put down how I was on my worst days.... and to appeal if I get turned down. As for the ESA, I have to send in regular "fit notes" from my GP, but I have still just been called to a medical. I definitely can't work right now as I get flustered for little things, have memory loss, lack of concentration, divided attention etc. How can I hope to work as a PA like that? Also, I need to SLEEEEEEEP all the time!!

Finally, I'm seeing the neuropsychologist at the local neuro-rehab place, which is proving invaluable. If you aren't seeing anyone, ask to be referred. She has yet to test my cognitive function, which I have problems with, because I'm so tired and the tests themselves are apparently very tiring. She says it's early days (I'm 3 1/2 months post SAH).

Take care, and ask if you want to know anything.

[Vivien]

Hello and welcome to the site Lisa

I went to Headway and they were really good and helpful, someone came to see me at home and phoned me regularly to see how I was getting on.

Now, three years later I am hoping to help raise some funds for Headway by being sponsored for their dogathon!

Vivien x

[JayKay]

Oh, also, when I was in hospital the volunteers from the Stroke Association came to see me. They have been very helpful, even though it's mostly geared towards ischaemic stroke sufferers. SAH is a haemorrhagic stroke.

[Karen]

Lisa, I had a probable warning bleed, 4 years prior to this SAH in 2005. I was basically misdiagnosed and there was a catalogue of errors by the medics... It looks as though my artery or aneurysm was held together with a blood clot for those 4 years, so I consider myself extremely lucky. xx

[Janet]

Hi Lisa

Welcome to the site look forward to hearing more from you.

[Liz D]

Hi Lisa

Welcome to BTG.

I too had a lot of hair loss, it was coming out in handfuls, this lasted for 3 to 4 months. I have shoulder length hair and can remember being quite shocked. Although I didn't have any bald patches my hairline at either temples had definitely receded! I spoke to my neuro surgeon about it at my 3 month checkup. He said this can happen and that they didn't know if it is due to being seriously ill or a reaction to the radiation used in surgery. But it did start to grow back in after about 6 months and my hairline is getting back to normal.

I'm so sorry you find yourself in the middle of a family feud, stressfull situations can cause terrbile supset to families but it's for them to sort themselves out. But as said before you have to be selfish, you have to put yourself and your recovery first. Is there anyone else in the middle, someone who can see both sides that you could talk to and ask them explain to everyone that this is not helping you?

Take care.

[Tina]

Hi Lisa a very warm welcome to BTG...really hope the upset between your family sorts out ...you really dont need that! Good luck at Headway...take care Love Tina xx

[maggie]

Hi Lisa and welcome. I too had hair loss around the site of my coiling. At first it came out in small clumps then continually shed for a few months. I have taken oil of evening primrose and cod liver oil tablets & had lots of omega 3's (oily fish is best) ever since and a year on my hair is better condition than ever! I hope you can seperate yourself from the family's problems. Like the others have said be selfish,unfortunately being selfish is a necessity you have been through too much to jeopordise your recovery now. It's so early days for you even though it may seem not to yourself, but you need to be allowed the time to recover at your own pace. Good luck Lisa and looking forward to hearing more from you. Maggie x;-)

[KelBel]

Hi Lisa

A quick hello as I am just about to get back to work after lunch...

Good luck for your continued recovery, hope to hear more from you soon.

Take care of you and let the others take care of themselves! They should not be heaping pressure on you to sort out their squabbles! Shame on them, but people just do not understand even half of what we have all been through

Kel x

[myratas]

Hi Lisa

A warm welcome to this site, love to hear more from you when you are ready.

Take care.

[LUISA]

wellcome to the site Lisa

I was told the falling of the hair had to do with all the medication I was given whilst at the ICU and during a whole month after the SHA, now 9 months post sha I no longer have this problem but i have short hair so perhaps that also helps.

My husband daughter and mother had a real fight whilst I was in hospital and when I came home which really affected me. I decided for once in my life I was the most important and this sort of thing was not convenient for my healing. I live with my family (hubby+son as my daughter is now living with her boyfriend) so will not accept any interference into my life from any other source. I need all my energy to recover cannot afford to let anything out.

YOU ARE THE MOST IMPORTANT ¡¡ YOU NEED ALL YOUR ENERGY TO RECOVER¡¡¡

look forward to seeing your posts

[Guest Midge]

Had blood test yesterday to see if they can see anything that may be causing the hair loss.

Also went to Headway last week, very interesting. It makes you realise how lucky you are in comparison to other people. Met a girl there that ironically went to my school but was involved in an accident when she was 24. Bang life as she knew it over, never married, no kids. Such a shame.

[JayKay]

I think you are right there, Midge. In the Stroke Unit I saw people who were terribly badly affected, and it made me realise "there but for the grace of God" and all that....! Hope you get an answer about the hair loss.