Daffodil

Ladies I direct my post mainly at you but gentlemen feel free to join in the discussion.

Since my SAH I have noticed that I have developed very pronounced dark circles under my eyes. As per the title of the post on most days I resemble a panda. It hasn't really bothered me til now, my appearance has not been a priority at all but the last few days I've gone to the effort of putting on some concealor because I look so dreadful and lets face it Halloween is well past

Does anyone have tips they can share to reduce dark circles ? . Is it a vitamin deficiency or just evidence of the tiredness? I know there are far worse things to worry about and i should not be so vain but , hands up, I confess, I don't like the panda look.

Having felt like I've survived by the skin of my teeth is one thing, to actually look like it is rather a bad reminder. I figure someone will have some ideas.

Hi you

Gosh it's horrible isnt it. And your trying to be mum too whist getting better. Hang in there. Big hug.

Wierd sensations are not uncommon , at least not for me. One of the other members Kris I think, could probably explain why the brain healing creates such wierd sensations. Does it feel a bit like banging your funny bone but with different parts of your body getting the tingling impact?. Not pleasant at all. Headway offer a helpline which I've used staffed by nurses . It's not open today but strongly suggest you speak to them. Tel. 08088002244 . They can offer some really solid support and reassurance when you are feeling worried and unsure. But get checked out if youre concerned

Keep talking and letting out the worry. That will help.

Daff x

This made me smile with familiarity. I've been keeping an infrequent blog and my last update was about air pressure. I definitely get affected by the weather, mind you the shunt probably acts like a barometer!

http://popgoestifty.blogspot.co.uk/

I've been pondering this morning about work ...and just sharing my ponder.

I'm not back working yet and reading and learning from your experience on this thread and others is hopefully helping me make sensible decisions about when to go back but also realism of what to expect when I do.

You have all taught me something. I'm not sure I'm going to be able to do what I used to. I don't just mean in terms of concentration and ability but in terms of energy and commitment. That's a scary thought but one I'm trying to adjust to now before I go back. For me that's a hard thing, knowing I can't be who I used to be, work how I used to work, achieve what i used to. So much of my work fulfillment was tied up in those things and now its going to change. Sure I could say I'm excited to learn new ways of doing things but I'd be lying.

Recognition of my capability by coworkers was something I was confident of, now they're going to discover I'm not the self sufficient, able person I once was and I'm not even reconciled to that yet. How will I manage their expectations?. Wow, that's a big change and adjustment to get used to .

A reminder of the fragility of our ability and how it is based on the equally fragile support from a healthy body. but forewarned is forearmed and already I've been able to have a frank and honest conversation with work in readiness for return so that they know they're not getting back the worker that left. I'll let you know how i fare as my back to work story unfolds.

Hi John, I'm one of the new recruits so we haven't chatted before. Nice to meet you virtually.

Sorry to hear about your challenges , that doesn't sound a healthy situation for you right now and i hope you can get it resolved quickly so you dont suffer.

Belonging to a union is a good thing, they will be able to draw on a wealth of experience and offer support to help you hopefully reach a workable solution.

Typically you will find the that whilst occ. health can make recommendations for what needs doing for someones initial return the workable application of this must be agreed with HR and line management. Its sounds like that bit got missed out for you here and its worth going back a step and asking the right people to regroup and explain why you need adjustment and what it looks like. Some advice for all is that when you are making new arrangements at work it's always worth asking for confirmation in writing or doing it yourself with email after agreement is reached just so you have a record. Memories are short...well mine is now

The disability act covers their responsibility to make reasonable adjustments but when it changes the nature of how you do your job or in their belief limits the success of that role they can ask you to take a new position. Im not sure wherher they are saying this job must have flexibility to travel, it sounds like they are. As for getting you to take a pay cut, if they are proposing changing your work role and remit then they are able to offer a pay cut this under you signing and agreeing new terms of contract, but if it's the same role then take advice. By the way it is for them to prove you can't do your role based from campus before they can insist on a role change not for you to prove you can, the onus is on them. My best advice though John is to talk to them. Get talking and understand their concerns but also for them to hear your current challenges. Reasonable adjustments are a great thing if they are done with the consultation and involvement of all, then they tend to stick and work because everyone understands and has a stake in it. Please don't get too upset over this, there will be people there who know how good you are, want you to continue to be successful and to find a solution that will work. I truly believe that, maybe I'm naive but I think most people like to help and not see others fail. Happy if you want to pm me some specific questions.

Daff

Kris, that's such a helpful post. I had nerve damage in my elbow when I was younger and it took an age to to heal. It tingled, went numb, had pins and needles but gradually it got better. However If I overused it in sport etc, I paid for it. To view the brain damage in the same context really helps me understand the slow silent nature of recovery . Thanks for your scientific view.

Vanessa so glad you're Having a better day.

Mary Mary lovely Mary. That's a great vent. And a justfied, bona fide one too! I get irritated when my one rather middle sized dog barks at the imagined squirrel at the door but you manage to spend a working week with that much noise and chaos. You're my hero!

Don't be down on yourself, you're Doing amazin things with less than perfect merchandise. And Halloween is over rated!! you can take a year off. Save yourself for thanksgiving.

Be kind to yourself lovely Mary, be proud of the good things, take the good days and enjoy the good company. yes it's a bag of gooey brown stuff to have all these crummy side effects but on the days when something feels just right isn't it just great? Few and far between I know but We get to enjoy and appreciate those days so much more than most.

Daff x

Hey Vanessa

Sorry to hear the dreaded headache fairy has returned to your house. I imagine her a bit like the tooth fairy but far more vindictive and she always calls at my place when I am over thinking things. I have observed that if I go to bed with any worry it is magnified in ways it never was before my SAH. I'm really sorry to hear about the pay situation and incredulous that the critical illness won't pay out, that doesn't seem right, can you question that? If an SAH isnt critical then not sure what would be. I know that money must be playing on your mind, thing is I believe that anxiety, fear, basically any emotion can get heightened post SAH so if you can find a way to reduce your level of worries it may help. It's a bit of a vicious circle, the worry creates the headache which in turn brings more worry. I don't have solutions, I'm working on it too. Meditating is helping me, and each night a very calming routine and trying to let go of the worries of the day.

Having said all that if your headaches are increasing then you should get it checked out that there is no other cause. Without wanting to alarm anyone I had increasing head pain at four months out only to find the hydrocephalus I'd had with the SAH had returned gradually resulting in crazy levels of high CSF pressure. What I thought was normal head pain was in fact not! My advice ( and you're the doctor) is if your symptoms have changed recently you should investigate. I also know some people have had to have a couple of lumber punctures later in their recovery to drain excess fluid and that worked for them.

Big hugs. You're doing so well. We all take backwards steps in our recovery but it's incredibly demoralising and hard when they occur but you WILL get past this.

Wem. Welcome to BTG , youre a month ahead of me in recovery and it's good to hear about your work plans. Good luck with them and keep us posted. Well done on the walk today

Im sure there's more as well but here's the link

http://www.behindthegray.net/vbulletin/showthread.php?8112-How-have-your-children-fared&highlight=Fared

Hi there. Welcome to the club and although it's not one I'm sure any of us would have sought out you have come to a good place where hopefully you will find some comfort nd reassurance.

I'm sorry you've had to stop breast feeding but as penny says congratulations on doing that long, that's something to be proud of.

I had my SAH and coiling back in march and seven months on the world looks a whole lot different. I wont tell you that I don't get scared about the future still but the worry and pain from immediately after has improved and I feel more confident now and energy I increasing slowly. I posted a thread a few weeks ago asking for advice as I have young children too, but not one as young as yours so I'll try and post the link here as I got some fabulous reassurance from that.

It's so early for you, I know it's hard to rest and sit back with the kids but honestly it's the way to go. Please try and take baby steps, it will help you in the long run. They will be ok, If you're anything like me there was probably too much running around after them anyway. It sounds like you are getting some family help, thats good, take it all.

Best wishes and feel free to pm me.

Daff.x

Be really proud of yourself for having that meeting. Think through what you want fom the job and take it fom here. Well done!

Super news Karen. Enjoy those cuddles and make sure you get some rest too.

Steve, be gentle with yourself. , I am glad you are doing well but it will have been a scary time all round. I found using hot packs alternating with ice packs helped with my back pain. I had that and also got some wierd tingling feelings post bleed and still do to be honest, but as Vanessa said it was also explained to me as the blood dispersing. ( i had a lot!) Kinda makes sense being in a closed system means its going to irritate other bits as it disperses. I would definitely wor with your GP to understand a bit more about what the impact of this episode is and what support is available if you need it. Best wishes.

Dawn, my gut feelings on this are that yes you should maintain a diary of conversations that are happening but I also think that the daily reviews are not helping you or your employer, weekly should suffice, it's making it all too front of mind for everyone. Also the Trivial level of some of the comments coming into these work assessments seem to be ill judged. Their duty in this to you and in the law is to make reasonable adjustments to help you return to work. determining what these adjustments are needs to be done and agreed together but it seems to me that the adjustments you require are not clearly understood where you work and they need to be. They cannot deny you reasonable adjustments unless they are too costly or impractical to working practices. Taking paracetamol , being flustered are non issues, a fully fit person would be in that situation from time to time.

The worse thing for someone returning is to feel they are waiting to fail, so let's turn it around and focus on what is going well, what success you are having, wow you are doing an 8 hr shift, that is brilliant. Then you look at The areas where you need support at the end of each week and how that can be done.

I would be happy to help you draft something here to help you have the conversations, hell I'll come into work with you:devil:

i think you would benefit from having a colleague act as an advocate or who would be prepared to be present when you have these 'review' meetings just in the short term to ensure they are ALWAYS productive and constructive . Also i think it would be ok to tell hr that you are feeling insecure and slightly harassed right now by all the continuous monitoring and you need their help to get to a solution , then offer the approach above. Assessment of work when it is used to help support and improve during return is good, when It is used as a negative or intimidation tactic then it's time to stay stop.

Just give me a shout.

Hey Karen, Win says it well. On the crying that's just part of what strokes do to us... I don't mind telling you that picture of jim and your gorgeous baby granddaughter moved me to tears. How special! (Only have to waft a baby near me and I cry! ) its called emotional lability i think so don't worry About jim letting the tears flow, either of you, it's normal.

I am sure the last few weeks will have been a real trial but in amongst all the tears and pain there is usually something sweet to savour. Looking forward to Having lots of grandchildren cuddles in the comfort of his own home in the coming weeks will be sweet medicine. Keep the faith.

Oh on help with the forms, there is a charity called Different Strokes, they focus on helping people under the age of 65 who've had ischemic or hemorrhage strokes, I am pretty sure they can offer some advice and help. Worth a call to their helpline maybe. I've found them useful on other things.

Hi dave, so sorry to hear the head is hurting so much. there is a lot of press here at the moment that too much pain relief can increase head pain but it sounds like you haven't had any relief at all. I was lucky that when I needed it I got to work with a fantastic Dr who headed up the pain clinic at the hospital just before I had my shunt fitted. At the time They couldn't get my head pain manageable so they trialled a 48 hr slow release mix of pain med and sickness control by sub cutting under the skin. It worked to break the cycle. It is often used as an approach for cancer patients but not often in our circumstances. They explained that by giving the body help to slowly manage the pain over time can help cut the automatic stress reflex which often heightens and extends the pain. I don't get headaches as often or at the same intensity as I was then but when I do I find that I need to drink lots, do my pressure points, take a pill and usually have a long good cry, the combination of all these things often seems to ease it...especially the crying:roll:.

I hope you get it sorted.

Great question about visits. It's tricky because they do help. As I was in London where I worked people were tempted to pop in so My family Took charge, they posted on my Facebook page that if anyone wanted to visit then to contact my sister first and then she coordinated it. Friends and family were asked to bring specific things which they liked being asked to do but also not to stay to long. I found it really difficult to judge how tired I got in the early days post the HDU so having visitors who could see I was getting tired , and who then left or were quiet really helped me. I watched a fellow patient when I was back in a few months ago receive visit after visit and lots of people around her bed. After they left she was very poorly indeed as all the effort to receive them drained her. Getting a balance is important and its ok to ask people t be considerate, they all love and care for her and thats the most important thing right now. Is there someone who can coordinate it for you Andy? explain you want to make sure that she has someone each visit and not overload her. Knowing someone is coming each time is great, also my husband took most of the late visits, that way he was able to get to work some days in the later weeks and then spend the time in the evening with me. hope that helps.

Karen, I hope that yesterday went off alright and that you have your chap home.

Morning Andy. I am glad to hear your wife is responding well, it's early days but the fact she has been coiled so quickly is good news. She will probably be taking nimodopene for the vasospasm risk but only need to do that for a few weeks. We had high fives around my ward the day I took my last one of those.

I imagine you've been through a scary time the last few days. The first time I got off ward post my SAH in march my husband showed me all the places he had had a little cry! We did laugh later at his water tour later.

Seriously though I just asked him what helped him cope 5 days in. He said to focus on the uniqueness of your wife and the situation, not to listen to stats, and take comfort in each small progress. Oh and to laugh when you can. He sends his very best wishes to you both.

Have you got family support? That will be very important , 7 months on from mine I know how much I rely on my family. How is your wife reacting, I know the drugs mask some reactions but I actually was pretty peaceful after mine and that inner peace is with me still, I hope she has the same. Please ask any questions on here and people will try and help. it's a site I am grateful for every day. I hope today is a good day.

Daff x

Karen, the best of news for you both. There will be some new challenges to face but the comforting feeling of being home is so healing. I'm sure you will quickly work out signals and routines and wish you all the best, hey and if he wants to strip off now he can do so in the warm surroundings of his own four walls, just warn the neighbours first . Well done.

Mary I too have been taking hot baths to warm up.

Sandi if only you were closer I could sneak in your hot tub, hang on though you get LOTS of snow so maybe not :lol:Win. I chuckled at the picture you drew for us! Thanks all.

I think I have mentioned before that i am really feeling the cold post SAH. I was a chilly thing before it occurred and now I'm like a little block of ice. A friend suggested a trip for a sauna or hot tub might help and I wondered if any members have any experience using them post SAH. I used to enjoy a sauna pre head pop but confess to being a little unsure as to whether it's a good idea now. I can't see any contra indications and will of course check with my neuro nurses and GP but do any of you dip your chilly feet in a hot tub? Does it help?

Sally. I hope your sister is doing well. I had my SAH back in march and have noticed my sense of taste has changed. It is stronger and more vivid and things I used to love, cheese and onion crisps , are now off my menu. Interestingly things I could never eat, tomatoes for instance, I now love.

Immediately Post SAH I found it quite strange, my tip is just to keep trying a little of anything she fancies. Savoury crackers are good, biscuits, i found the more i ate the less i noticed it. I also found some medication suppressed my appetite, morphine especially. Changes in the pressure of your head can causes sickness, so as the blood finds it way out there is a adjustment each time, some people are more sensitive to this than others. When I was bad like this I drank lots of protein drinks to keep my weight and strength up.

In hospital I was either away with the fairies, drugged to eyeballs or in a euphoric state of 'I'm alive'. I'm not sure I would have wanted to talk to someone at that point or welcomed it. Move the clock a few months and I NEEDED to talk to someone like me. someone who could explain these feelings, sensations, the uncertainty, the anxiety, who could reassure and listen. Then I found you all. And not just in recent posts Sally, but in older posts going back years. (I know for instance about Bogbrush being Morph, back in 98 I think)

I read old posts when I am unsure of things with me and they lift me up , inform me, and sometimes make me smile. I bet you all have reached so many people in the same way. The Words from people who have shared this experience are the blanket of hope and comfort to people just arriving. Just because you are not sat in the hospital Sally does not mean you have not been sat at my bedside on many nights. I'm sure other across the world would agree.

Do what you can because you want to. I send my thanks to all bTGers past and present for the help on this journey.

Hallelujah! Karen that is good to hear that they are listening, responding and that your lovely man is getting some better care as he deserves. You've done great!