JayKay

More hugs from me! It's definitely very early on in your recovery (I know, I hated hearing that too) and you are going to have good days and bad days, like the others have said. I'd also phone back and explain to the surgery about your recent brain haemorrhage - you shouldn't have to wait 4 weeks. It's probably nothing, but you do need to be examined by a healthcare professional. Or as Karen said, try the Consultant Surgeon's secretary. Did you get the number of a specialist vascular nurse at your hospital? I did and even now, 18 months on, she says to ring any time I am worried....

Don't be too hard on yourself. You need to take it easy and put yourself first! hugs x

Sorry But you should definitely see your GP about it. Hope you get it sorted!

Hi again!

I'm getting massage too but my RMT stays away from my neck. She leaves that to the chiropractor who is very careful with me and never does any snaps or cracks in my neck. Massage on my back really helps the balls of fire on my spine in the upper back region. Massage also helps to work out the concrete of fatigue (heaviness) in my arms and legs.

Sandi K.

Me too - I see an osteopath who is very gentle and says do not let anyone try and snap/crack the neck any more!

Christoffer: welcome to BTG. Are you sure the GP can't see you sooner? Or can you phone the neuro people where you were treated to ask them if you need an appointment? GPs don't tend to see many people with SAH....

Good luck with everything. Take it easy - I know I hated people telling me that, but you DO need to take care of yourself and make sure you rest and drink plenty of fluids! Take care.

Yup, I'm another one who knows how you feel!! It's true, you can get to the point where you just go "I'm fine thanks" because it's just easier than trying to explain... For people who know me, when I bump into them at the hospital, I tend to go "I'm getting there, thanks"!

Like others have said, I am always getting the comment "oh I forget stuff too" or they tell me I'm getting on a bit. And like the others, I think, heck, I was doing two jobs and could multitask like a demon then one day it all changed overnight. That is NOT just getting old! I remember, also, when my mum had her stroke at 74, she was running the library as a volunteer, doing their accounts, translating and giving speeches for the D-Day veterans, driving here there and everywhere - and every time I spoke to the doctors about her I was saying "you don't understand, my mum is a YOUNG 74, she's dynamic, she's intelligent" etc. I felt they just saw her as this old lady who was practically a vegetable. (I'm proud to say she's now 79 and doing really well, living independently and everything although her speech is bad).

Anyway, not wishing to hijack, but just to say I HEAR YOU, and keep smiling

This is a great thread! I have decided that I am having such trouble understanding how little I can do, how changed I am etc, that it's no wonder those on the outside find it impossible! I must say we had great support at the National Hospital and I was given the excellent pamphlet that you can find on the Brain & Spine Foundation website. I was told to get my family to read it too, and I'm glad because it's very detailed. I also had great support from the Stroke Association with their leaflets, and Different Strokes with theirs! I feel I know an awful lot about SAH now lol.

I have also been invited to a series of workshops at the National, with the vascular nurse and the psychologists because they want to see how they can help survivors with after-care. I can't wait - the first one is on Wednesday afternoon. I will definitely suggest any conclusions they draw be published and maybe rolled out around the country....

Maybe I've been lucky but I do have a bunch of very very good friends, who all keep an eye out for how tired I'm getting and who are all very supportive. It might help that lots of them work in the NHS (as I do/did) and my other friends are involved in Community work and disability.....

What's that saying? Those that matter don't care (what you're like) and those that care don't matter......!!

Aw Sharon, I'm sorry to hear about your mum. As plenty of others have said, don't be too disheartened just now, it's very early days. I was a bit weird after my SAH and surgery, but I know what it's like to be in your position because my mum had a stroke (a clot) 5 years before mine and it was horrible seeing her so poorly. She is now 79 and living alone with just a cleaner and a home help a couple of times a week. Considering she was in nappies and couldn't speak, and it was a struggle to take each breath, I now know that miracles happen!!

Glad you found us. Don't hesitate to ask any questions you may have. Take care!

Glad to be of some help! It's interesting (and reassuring in a way) to see how many of us suffer from fatigue. It must be very hard for others to understand though - I know as a medical secretary I used to poo-poo (in my head) the chronic fatigue patients who'd phone up and go "it's so haaaard, I'm so tiiiiired" but then, they would say "I did a 10 mile bike ride and it took me days to get over it", when all I could think was "I can't even DO a 10 mile bike ride, you think YOU'RE tired?". Now I feel bad because chronic fatigue is a killer

Anyway, at least we have each other to lean on. Keep smiling, eh?!

Oh gosh I can SO relate to this! I'm nearly 18 months post-op and I get some very bad heads/bouts of fatigue. I just posted about it in the Green room - check it out.... Keep smiling

Edited to add: to explain how it feels for us, check out the Spoon Theory here.

I am not sure where to put this, so I'll put it here. The Brain & Spine Foundation contacted me asking if they could quote me in a new article about fatigue. (Of course I said yes!). Anyway, it's gone live now, so here is the link, if you are interested.

Sorry I haven't been around lately - the fatigue has flared up again, nearly 18 months post SAH/clipping. I keep thinking I'm "over it" and then I get laid low for a week again, and my brain starts to go foggy again. Hey ho! At least I'm still here. Keep smiling

Admin note 24/12/13 - This link is no longer working. Please click on Jen's Blog below.

Hi Zoe! Great to hear from you again. I'm sorry it's so hard though - I know how difficult it is between me and my partner and I don't have the problems Rich does, so I don't know how you cope. Take care and fingers crossed for everything!

Such wonderful news! Since my mum's stroke and my SAH I have come to believe in miracles It's amazing what the human body can endure and then recover. Fantastic!

Hello and welcome! Yes, we are the lucky ones I suffer mainly from short term memory lapses and fatigue, but 16 months in (tomorrow!) I'm beginning to get much, much better. I think I delayed my recovery by pushing myself too hard for aaaages. Like someone else said, I used to pride myself on being quite a clever clogs and not being quite as on the ball was a huge shock to me

Anyway, there is a good NHS page about RLS. It explains how sometimes if you avoid the reasons behind the RLS you can do something about it. I get it when I'm really tired - overtired I suppose. When it's past my bedtime for example. It's been happening for years and is neither worse nor better since the SAH. As a medical secretary I am sure I've typed letters stating they give quinine sulfate for it - is that what you were offered? I don't know of the possible side-effects...

I hope you find a solution to your problem as it must be really annoying!

That's right ladies!! Feel it to heal it

This is a simple exercise designed by my Life Coach Maia Berens to help you to see the gift in every life situation. I was reminded of it by a post that Lin Lin wrote - all her posts are so positive and eloquent, and I thought I'd show you all how we can aspire to be like her!

INSTRUCTIONS

Take a sheet of paper and draw lines to make three columns.

In the middle column write your CURRENT PICTURE in 3 sentences or less. The CURRENT PICTURE can be a situation in the present or something from the past that still has a negative charge. Choose something that still elicits a negative emotional reaction when you think of it, or when you are in the presence of that person or situation.

Next write four or five negatives about the situation in the left hand column.

After you complete that list, on the right list four or five things you learned and/or "gifts" you received from the situation. A gift may be an actual object, but, most likely, it will be an unexpected benefit or something you’ve learned about yourself or life. The number of negatives and learning gifts may or may not be equal and they aren't the opposite of each other. For example when I hated the heat in Las Vegas, the opposite was not true - that I found a way to love it. If you are having trouble finding any gifts or positives in the situation, ask yourself, “If I did learn anything from this, what would it have been (or be)?” Sometimes phrasing things in this way “tricks” your denial system into allowing you to see what was previously hidden.

At this point in the process when you have completed those previous three parts, you will be trying to take the negative view you once held and transform it into a more positive one. That is called the NEW PICTURE. You will take a moment to recap your learning now and let more emerge in the ensuing hours, days or months. Go back and write it down whenever more learning surfaces.

It really helps and you can do it for any difficult situation that arises in your life. I know the power of positive thinking as my mother was always telling me "Think positive Jennifer" as I was growing up. When she had her stroke aged 74 she was bedridden, paralysed, couldn't speak - and yet she just kept on being positive and after less than a year she was allowed home. At first she had nurses etc to help her wash and dress, and a home help and cleaner etc. Now, she just has a cleaner in once a week and a home help who does the ironing and takes her shopping. She is 79 and I have never known anyone as positive as her. Except maybe Lin Lin!!

Hope you don't mind a bit of mumbo jumbo.....

Hi Bill and thank you for your story so far. I look forward to reading the rest! I have come to believe that the earlier one finds a support group the easier it is to accept what's happened and to start to rebuild your life.

I have started up a Different Strokes group locally (with help from their head office) and I really hope to help more people. One guy phoned yesterday and left a message saying his stroke was 4 or 5 years ago and he really hasn't come to terms with it emotionally.

Lin Lin is fab and our resident wise one Everything she says resonates with me. She shows us how to find the gift in what has happened to us. In fact, that reminds me, I'm going to do a separate post on "finding the gift" lol!!

Take care and speak soon.

Hmm I hope the surgeon can shed some light. I have (and have had for 20 years) more the feeling of my head being in a pressure cooker. My hearing goes muffled. I thought it had stopped since my SAH but nope, it still happens occasionally. When I had the SAH, I didn't so much feel like I'd been hit over the head with a bat, my head felt like it was really badly in a pressure cooker and I couldn't move my neck. I have no idea it it's linked!

Yay! That's great news I know how awful it is to have to jump through hoops.... I got my ESA (unemployment) but am still waiting for the Tribunal for DLA (disability living allowance). And my SAH was nearly 16 months ago!!

Thanks for posting, I guess he'll unlike us he'll know whats going on and stuff.....

Definitely! My GP asked me (as I'm a medical secretary) "were you scared?" and I said no because I didn't know the statistics....

Hope it all went well today x

Hello and first things first: you've found us, which is brilliant! The one thing I kept disregarding was "take it easy", and every time I crashed and burned it set me back. Now I've realised that everyone was telling the truth - it does take a long time to recover! Now I'm nearly 16 months in and I finally feel like my cognitive issues have improved a LOT!

Take care

Hello and welcome. Having experienced both sides of the coin (my mother had a stroke 4 1/2 years before my SAH), I'd say it's harder for the friends and relatives! Hang in there and don't hesitate to ask any questions you may have here. What a good friend you are!

My mum was 74 when she had her stroke and was in nappies and couldn't speak, paralysed down one side. Over time, in rehab, she made great strides and now lives along again, with just a home help and cleaner. Her speech is still improving even now.

I have also met many survivors through the Stroke Association and I've started a Different Strokes group - I have learned to have more hope than I had before this happened! One of the ladies in the group had an SAH 18 years ago, aged 40. She was in a coma for 6 months! But now, although her speech is still very affected and she still has paralysis down one side, she leads a very full life.... See, it's important you don't give up on your friend!

Take care and wishing you and your friend all the best.

Welcome to BTG and I'm sorry for the anxiety you are feeling. I haven't had an angio since the emergency one, because I was clipped so they say there is no risk of it happening again. I hope Sandi's description is helpful - it would certainly reassure me

I remember after my SAH being told it would be 18 months to 2 years for recovery - and I thought no way! I have the same issues as you, and they were really quite debilitating for a long time. The more I pushed myself, the worse they were. I learned, and listened to people on here, and took it easier. And now, nearly 16 months on, I'm finally feeling a lot less confused and my memory is better. I still have the fatigue that descends out of the blue, but I've got better at pacing myself so it happens less. I'm still not back at work, so I think you've done amazingly well!

Take care

Hi there! Just commented on your blog too. I'm so sorry you didn't get the all clear, and also to hear about T being out of work. Believe me, money problems were HUGE when I had my SAH (I was in a temporary job, the other half was out of work.... no income AT ALL for 2 months, all while W and my daughter had to get the train every day to see me, which cost an arm and a leg. Awful). Luckily the benefits system here worked for us and I hope and pray that you will be ok too.

Another thing I can totally sympathise with is the feeling that I'd be back at work within a few weeks. Recovery can take 18 months to 2 years they said. I also laughed at that - no way, not me. I'm strong and I'm fine, look, no paralysis, no problem. Ha. Ha. Ha. It's now coming up to 16 months and I finally, FINALLY, feel like I'm getting somewhere.

So take care of yourself, don't be too hard on yourself, and don't forget I'm here if you want to talk. xxx

Hi Melissa and welcome!! Yes, I hope you find the support you need here. There are such wonderful, warm people, people with and without shunts, with and without epilepsy... ! My friend's daughter had CSVT last year, she was about 17 I think - it was a tough ride but she's doing great now.

Come back and talk to us again

Great news! Now, don't overdo it when you do go back to work, ok?!