Am a bit lost now after 1 year.

[sallym25]

Hi everyone,

I've recently had the first anniversary of my rupture and clipping. I see everyone saying regularly about going for scans,angios and therapies. Other than a chat at the six month mark, I've had none of this. At that 'chat' I was told remarkable recovery, you can go. No scans to check the clip or anything. I have a blind area which the opthalmologist looks at every six months., but he has told me this will not improve. I am slowly learning to compensate for this. Due to it I am having problems getting back my drivers licence.Driving was my Job before this too. My ESA was stopped after a medical a few months ago and now my DLA is due for re claiming. I am thinking now I am classed as normal. Unfortunately I know I'm not entirely "normal" . When I am faced with a crowd of people I just seem to cut off and withdraw into myself. I can't concentrate on what people are saying to me. It seems I will have to find a job but I know I couldn't cope with the likes of shop work. What if two customers need attention at the same time? Also I could sleep 24 hours a day. I've tried doing that but I never feel refreshed or energetic.

I never really understood what ESA was anyway. My sister organised it for me while I was 'out of it'. I know it stands for Employment and support allowance but that makes no sense to me either. Thing is, I'm sure there must be something that someone like myself can claim, even if it means attempting to do some kind of job at the same time. I just don't know what it is. Can anyone help with this.

While I am here, can I ask if anyone can tell me what the difference is between a psychologist and a psychiatrist. I thnlk I need some kind of therapy but don't know what kind. I hope this makes sense to someone as I'm confusing myself trying to write it all. Thanks for taking the time to read all this mumbo jumbo.

Sally x

[Gill C]

Sally it is odd to have all the nuirses & dr's buzzing round you in hospital & then when you come home nothing! It seems like you are abandoned & a GP friend asked me how the aftercare was going so I said 'what aftercare!'

AS for the scans as you wree clipped like me you only need to be reviewed in clinic & don't need to ahve angio's every 6 months (for which I am glad). Isee my Cons at clinic for review after 3 months & i guess maybe another 6 months after that? AS for my eye I had a review last week & then will ahve one in 2 months or so but I suspect if there isn't much improvement by then it will be at least 6 months before they ask for me again:frown:

If you feel you need counselling you could ask your GP or the hospital where you were treated. I wasn't aware of anything like that & no-one offered it as a matter of course. In my opinion is should be offered to all after nuero surgery. i am now wait for the neurophyscologist to contact me, not sure what the difference is between them & a physciatrist except that one deals with defined mental problems rather than offering support.

As for the work thing it's worth either speaking to DIAL for advice or Headway, the benefits advice line were very helpful too.

Huge (()) I do think recovery from SAh is a lonely business

[Karen]

Hi Sally,

I can't help with the benefits, as didn't realise that I was entitled to anything ... I only found out about DLA after 2 years post SAH and haven't claimed anything.

My interpretation of Psychiatrist is somebody that treats mental disorders and they can prescribe medication .... A Psychologist is similar, but as far as I know, they don't prescribe meds and offer cognitive and behavioural therapies.

Sally, if you feel stuck and you need a friendly ear, please always feel free to PM me .... The first year is the toughest one to deal with and to be honest, I think that we should all be offered counselling at this point, if not before. xx

[KelBel]

Hi Sally

Sorry to hear you are feeling cast adrift by the medical profession...it seems to be a common theme for us SAHers, along with mis-diagnosis in the first place!

I was discharged with no info whatsoever, and very limited answers to the questions my brain managed to come up with at the time (could I drive? could I go back to work? is there anything I should or shouldn't do)...

I was not offered any therapy, although I did obtain the details from my work for our counselling service, which was brilliant and really helped me initially.

My company has now sorted out an Occupational Health package, so I am awaiting referral...if only they had been there for my 'phased' return to work... better late than never I suppose?!

I would definitely go to your GP to request referral for counselling, as I have now been referred via my GP (as I only get so many sessions via work and needed some more help).

I do hope you get some answers from others with regards to benefits. I have not claimed any, and am not sure what is available for claiming either, although my friend keeps telling me to fill in the DLA form I now have...

Take care

Kel x

[Lin-lin]

Hi Sally

Recovery is hard work, isn't it? It's not just the physical side. It changes you socially, professionally, financially and emotionally. But the doctors don't warn you about this.

My SAH was in November 2009. I was a Solicitor, I ran marathons and socialised a lot.

I was told I would be better in 3-6 months. This was completely unrealistic and caused me to feel depressed early Summer when I still found myself unwell.

I saw my Consultant in July and have had a CT Scan, (to assess hydrocephalus.) I am awaiting the results. The aftercare is not overwhelming, although I concede that at least I have had a scan.

My Consultant concentrated on my physical progression. Although I'm battling fatigue and insomnia, these are so common post SAH, I don't think they're considered problems. Common symptoms maybe; but they're new ones on me.

I consider what happened to me a 'career changing' disability. I am sensitive, less resilient to bounce back from upset, slow to work through problems, forgetful and I don't like spontaneity. I'm probably depressed.

I'm presently on ESA, the benefit which people receive when they cannot return to work because of ill health. You can earn up to £93 pw whilst claiming ESA. Have you been invited to your Job Centre for a Pathway to Work interview? I found this helpful. Arrange one if you've not been. It's about receiving assistance in getting back into employment.

I will probably 'fail' my medical too - the questions are deliberately narrow. The fault lies with the system, not us. Go to your local CAB for help with the appeal and DLA forms.

At the CAB recently, I've been covering reception. One might think I'm overly qualified, but it's truly my level, for now. Ill health is a humbling experience.

A psychiatrist concentrates upon medicine as a treatment for mental illness. A psychologist explores our emotional health with behavioral intervention; counselling for want of a better word. If you feel that you need therapy, maybe your GP can refer you. You don't need a psychiatrist, sweetheart.

It would be impossible for anyone to bounce back from a life changing event without any ill effect. Not only that, it is our brains which 'broke!' The very thing we use to process situations, feelings and responses.

Your fears and concerns are perfectly normal and counselling may help you harness your emotions constructively. It's about looking at the situation differently.

Don't trouble yourself with benefit forms anymore. Let the CAB do it.

Any other specific concerns, run them by me and I'll do my utmost to help.

Lynne xx

[garyolly]

Hi Sally,

Sorry to here that you seem to be having a hard time just now. Unfortunately i can't help with the benifits as i'm not entitled to anything as i have a small Navy pension.

Try not to stress about the follow up scans, although it does appear that you may have to ask your GP/ Cons if any are needed. Hopefully not and everything is ok. On the bright side, your one year on......HOORAH !

As for reading mumbo jumbo, thats what we are all about, aren't we?

Take care and chin up.

[Vivien]

Hi Sally,

Congrats on being here 1 year on

I would definitely recommend getting in touch with Headway, they are really helpful, understanding and can probably help you with the benefits minefield.

I was coiled and that is why I have to have scans etc, I think if you are clipped then it is done and dusted as far as the neuro surgeons are concerned. I think that the aftercare is pretty poor, because nobody really tells you what to expect afterwards and how long recovery will be. I think it is mainly because they don't know! everybody is different and recovers at their own pace, ( in my case that seems to be very slowly). One doctor just said to me 'How long is a piece of string' when I asked him when I would recover

Maybe go to your gp and ask about therapy? I have had counselling and a short course of anti depressants and it really helped.

Take Care of Yourself

Vivien x

[maggie]

Hi Sally I am sorry that your feeling lost your not alone. I am 18 months on and still feel just as you described, more often than not. I can sleep for Britain and as you say not feel refreshed. I long to wake up one morning and feel fully revitalised and ready for anything! Am not good in crowds and spontaniety a thing of the past. I had coils so am not sure of the after care for clipping but what I do know is that after six months I was offered councelling with a neuro psycologist from the hospital which was invaluable to my recovery. I agree with Kel you should ask your doctor for a referal and don't take no for an answer. Councelling as available and you would definitely benefit by seeing someone. Like I said I found my visits to the psycologist most beneficial and could n't have managed my recovery as well without her help... As for ESA you can appeal, I was told that most aplications get declined and turned around at appeal, your doctor should help you with that also. Pathway to work is something which you should be offered by your local DSS office so get down there and sign on asap, this should mean that you get some benefits better still give them a ring Monday. You can look up benefits on the web site there is quite a good site which can tell you what your entitled to as a prelude to contacting DSS in person. Hope you soon feel better,it's a minor hic up Sally it will pass. I am sending huge hugs, pm me for a chat anytime Love Maggie xxx

[sallym25]

Hi,

Thanks to everyone who responded to my post. Some questions are already answered. I now know it's a phsycologist I need to ask for.

Lynne, you're so clever for someone so young. Your posts always amaze me with how well you describe it all. Wish I could take you to my doctors with me. I have a pathways to work interview on the 18th. Been to one already and just feel stupid trying to make myself understood.

Gary, Yes a whole year on. Thank goodnes I'm finished with all the 'might not wake up if I go to sleep' and 'I'm no use for anything' stuff. I still think they were the hardest things to get through.

Gill, can you tell me what DIAL is please? I never heard of it.

Oh well, thats the sun out now. Think I'll go for a wee stagger down the street and talk mumbo J to myself. Hope no one sees me.

Thank you all again for your kind words.

Sally x

[maggie]

Hi Sally I have written a reply to this thead and I don't know where its gone . I just wanted you to know your not alone am thinking of you and hope you feel better. Maggie xx

[laanka]

Hi Sally

Your Social Work dept will have a benefits officer who will be able to give advice if they don't call the local citizen advice .If that fails email me privately and I will see what numbers I can get for you.The GCIL in Glasgow is good but they can often forget to get back to you.

[Gill C]

Sally here is the link to Dial, they are very helpful & as they are a charity I found the ladyI spoke to very empathetic & understanding (I guess volunteers who have probems themsleves)

http://www.dialuk.info/

Thy are fab at advising how to fill forms in or appeal to the best effect, I have a 4 hour apointment to fill in my DLA form at the end of the month

[sallym25]

Maggie,

Thanks. I have noticed it's taking a little time to go through. Karen has posted on the upgrade thread to say why. I almost posted twice yesterday too. Can you tell me the address of the site for telling you which benefits can be claimed. Half the battle is the trying to find all that out. Thanks again. Sally x

[Tina]

Hi Sally, just wanted to also say you are not alone xx ...first year is very hard and i think you have done amazingly I also have moments now. Cant help much with the benefits side, but my GP centre helped me in the end with filling out the dreaded forms. Also i had to reapply as was turned down. I went through my GP for councelling, i was put on a waiting list that was 6 months long...but it was worth the wait as it really helped. Agree with the others councelling should be available for everyone. Dont give up on the driving....it took me 2 years for my eyes to get good enough to be able to drive again. Sending you a big hug Sally, hang in there. Take care lots of love Tina xx

[maggie]

Hi Sally hope you had a good mumbo jumbo natter to yourself! I have them all of the time even when I feel better I still have to have a blur bla blur bla bla blaaaa moment daily infact! It helps to sort my head out!

The site that will help is The Dept of Work and Pensions (DWP).... Esa replaced the old incapacity benefit it means Employment Support Allowance. Just type in ESA it'll take you were you need to be. Failing that go to the Job Seekers Allowance JSA site this gives you heaps of information.

Hope your feeling alot better. Love Maggie xxx

[JayKay]

I'm so sorry you are not getting the support you need. I think I have been lucky because my partner was told (not sure by whom!) not to let me be discharged from hospital without a care plan. I have been referred to the neuro-rehab place locally and I go there once a week. The psychologist is really helping me. Luckily also my GP says I am not ready to return to work; I thought he might think "alright then, you're all better now, back you go". I had to claim ESA as I was temping when I had my SAH so there was no income coming in - my partner was also out of work. It got stopped when I "failed" the medical, but has been reinstated pending an appeal process..... It's such a pain to have to fight for everything. My DLA was turned down, but I am thinking of appealing, just because it makes me sick that people who don't need it can get it if they know the right answers to give!!

Take care. You are amongst friends here

[goldfish.girl]

Hi Sally, I have just passed the 2 year mark and I know how you feel. I am back at work part-time but not doing the level of work I used to do and, even worse, not particularly good at the work I now do if I am honest.

Like others on here I find crowds and socialising difficult. I went to a school reunion on Saturday thinking that would be a great test of my 'improvement'. It was probably the worst thing I could've done. I couldn't remember faces or anything about people after I remembered (or was told) their names and had no idea how to start a conversation, didn't have a clue what to talk about and was terrified of getting muddled and making a fool of myself.

I was initially turned down for DLA but went to tribunal (I would recommend asking someone to speak for you if you struggle to explain yourself -hind sight is great!!). I tried to speak for myself but went totally blank & only got the lowest level (less than £20 per week) - but it is better than getting nothing at all. Good luck xx

[Liz D]

Hi Sally

I was replying to your post and have no idea what button I touched but it's disappeared, what an idiot!!

But I just want to say congratulations on you first anniversary. I had mine in February and have come on leaps and bounds since then and I hope you find the same! It's the changes in us that's harder to come to terms with. But that's also really good news that you don't have to see your consultant again. What you have been through is way more invasive than coiling.

I'm working in the admin office of our NHS Trust's Psychological Services Dept. Psychologists have a degree in psychology and work with the person to help them find a way through a problem and try to help them think about things differently. They use different therapies and specialise in different areas and specialise in either adults of=r children. This is a sort of partnership with the patient but in Scotland you are given 6 sessions. Only in severe cases are they allowed more sessions. Your GP should be able to refer you to this service.

A psychiatrist has gone through medical school and then specialised in psychiatry. As they are medical doctors they can prescribe medications for mental illnesses. This is more your usual doctor patient relationship and you go on seeing him/her until you are well, the appointments are not limited.

I hope this helps a little and is not too rambling!

[jess]

Hi Sally it will get easier in time but about benefits i never recieved any. Jess.xxx

[stephen]

Hi Sally

I have sent you a private message I hope you get it.

Stephen

[lawla]

hi, im one year out also. A physcologist only listens to you and a physciatrist medicates you. And dont keep yourself away frompeople and noise it makes it worse slowly start to do those things again.