ClareM

Welcome to BTG Janet glad you have found us. I have replied to you re work in another thread you posted in so won’t repeat myself. 

You are very very early days in your recovery and should take a step back and reevaluate   I too was a very busy person who was always on the go working long hours in a stressful job. 

What this his event has taught me is that I now have to slow up. I still do lots and my physical activity is probably more than pre bleed. But it the mental side that still gets me 3 years later.

I’ve just been on a weeks skiing holiday and suffered minimal fatigue. Back home and at work for 2 days and I’m suffering again. It’s because of the concentration needed to do my job, so I’m glad for my mid week day off.  

You hopefully will will get more energy back. I remember at 2 months I struggled to walk far or do anything that required concentration for any period. 

Be kind to yourself and slow up - you will get there in time. 

Feel  free to ask any questions. 

Clare xx

Hi Lynn

Welcome to BTG, glad you have found us and hope you are finding the site useful.

Your progress sounds very like mine at the a similar stage. How are your 4 working days split? I work Monday, Tuesday, Thursday and Friday with Weds off. I found this the best working pattern for me and still do that now just over 3 years from my bleed. I work 7.5 hours a day now and manage. It's the day off in the middle that helps as it's my day to rest and recuperate and that's what I mainly do - rest.

At 10 months you probably will still be experiencing quite a lot of fatigue this could be caused by stress of working too. Stress = fatigue and then anger. I can totally empathise with you there. You just feel that you can't cope anymore and then erupt!

Maybe try changing your work pattern or even drop an hour a day if you can.

Are you still drinking plenty of water? This really helps with the headaches. But I will say that stress and fatigue will also cause headaches so maybe it's just time to re-evaluate. My re-evaluation eventually caused a whole new career change.

If the migraine meds  aren't helping, go back to your neurologist and tell him, no point in taking medication if it's not doing it's job. I used to get pain at the back of my head but it has eased with time.

I hope you start to feel much better soon, keep us posted on your progress and remember - it's still early days, most SAH recoveries are measured in years.

Clare xx

Hi Julie

As Tina says, a warm welcome to BTG sounds like you have been led a merry dance to get a diagnosis. Drink plenty of water and rest, they are the best things for you. That and get on to the hospital about that group meeting. It really helps to speak to others in the same boat - as we are on BTG. Makes you feel less isolated and helps to make sense of all the problems.

Come back and let us know how you are getting on.

Clare xx

Hi Kathie

If  you are in the U.K. You need to take advice re your work. Your employer has to make reasonable adjustments to enable you to return to your job and refusing to alter hours is not reasonable considering what you have been through.  Speak to citizens advice as they should be able to help. 

However as Macca says a change of job is not a bad thing. I have changed twice since my SAH something I never thought I would do at my age but it has been necessary. Don't discount any options but definitely take advice. 

Keep us posted. 

Clare xx

Sophie it is really early days for you, that feeling of disbelief at what has happened will settle in time. Your memory will hopefully improve, at your stage I couldn't remember much at all. I remember cooking a chilli and not being able to remember if I had put the chilli powder in or not. Needless to say it was a very hot chilli!

You sound tired, are you trying to do too much? Taking your GCSE's must be so hard on you afyer what you have been through, you are very brave to be doing that. I would imagine that has really taken its toll and maybe anything else is just too much. I can imagine how important those exams are to you, so maybe try and avoid anything else until they are over.

Hang on in there, you are doing well

xx

Hi Sophie, welcome to BTG glad you appear to be making a good recovery. Very brave to be taking your GCSE's good luck, hope you do well.

My brother had a SAH aged 15 - he is now 61, I had mine 2 years ago at age 55. We are unsure if his was auerysmal or not as neither my mum or dad are still alive and they knew the details. I don't even know if they coiled that many years ago. When he had his the first thought was that he had been drinking, he had been to his girlfriends and run home.  

The hospital were interested as we were both treated at the same place, but their records don't go back that far. He was in hospital for a long time, months I think and he had to learn to walk again as in those days you stayed in bed. Things certainly have changed since then. He did make a good recovery though and went on to race motor bikes - in the amateur field. He's still alive and well though slightly mad lol! He says we are special mad brother and sister  

Mine was non-aneurysmal with hydrocephalus. I have recovered well with just fatigue and slight memory problems..

I hope you continue to recover well, feel free to come back and ask any questions, there is always someone here to listen.

Clare xx

Lol Daff, I think we all have the toilet challenge story! I do vaguely remember mine, however I rememeber the solo shower challenge better.

Lovely shower managed alone, back to the ward, stood by the window and sang;  ' Oh what a wonderful morning' then prompty threw up and then slept for 4 hours. 

Well done Daf on a great story, think we can all find something in common in it.

Clare xx

Hi Joanna 

Welcome to BTG, still early days for you despite it being last July. Are you drinking plenty of water as it really does help. My son used to bring me a large mug of tea and a big glass of squash every morning for me to drink in bed. I remember lying in bed, head under covers just waiting till I felt ok enough to sit up and start the day.

I doubt that hung over feeling is due to the paracetamol and ibuprofen, they don't have that effect, it's probably just the after effects of the sah, but if you are worried get it checked out.

You have the added complication of a 3 year old so that must make things that much more difficult. The fatigue can go on for a long time, I still suffer now and am coming up for 2 years. Just take it easy as much as possible and try and accept that life may be just a little more different now. Not worse, just different and eventually you will accept the new normal.

Good news about your memory as that is often a lasting side effect. I expect the short temper is due to fatigue, try stepping back a little and let others do things.

I am sure many others here will have plenty of advice. Sounds like you are doing great, be good to hear more from you.

Clare xx

Happy Anniversary and hope you have a Happy Christmas. 

I think we will always have good and bad days but hopefully the bad are less often as time passes. 

Well done for getting to where you are and nice to see you keeping up with BTG. 

Clare xx

Hi Jac,

Don't know about superwoman, more like mad woman!  

I know what you mean about a day at work though. I have had one of those busy stressful days today and am good for nothing this evening. In fact most evenings I just lay on the sofa resting my head, surfing and watching TV - that's when it's not a running night 

I could feel my head getting woollier and woollier at work this afternoon and was glad when home time came. I need to learn to take time out when I feel like that but it's difficult when you are working as a team and want to get the work done.

They never found a reason for my bleed but the hydrocephalus did resolve so I didn't need a shunt. I just have the tell tale EVD dent in my temple, I think of it as my battle scar! 

So glad you are making plans for next year, be something to look forward to. My husband was very supportive and still is though I think he gets a bit fed up with me constantly saying I am tired. My daughter has just moved to London and wants me to go and visit next weekend. I will go (by train) but I can't say I am really looking forward to it as after my working week (only 4 days) all I want to do is relax. 

Don't feel a fraud being at home, use it as time to relax gather yourself. I phased back over a long period and now have Weds off as my recuperation day. I haven't had to have anytime off since but if I felt ill enough I would, life's to short to be a martyr for work.

Hope things continue to improve for you.

Clare xx

Hi Jac

You had your sah just before me, mine was 10 Feb 2105. It was a NASAH with hydrocephallus and an EVD so no driving for a while. Sounds like you had a nightmare getting the diagnosis, just goes to show how wrong medics can be sometimes. 

I too like a wine but can't drink much now without becoming a total amnesiac.   My husband always has to remind me the next day that I've already told him stuff and I really can't remember conversations I have had too. I find if I drink lager it's not so bad. 

Sometimes it really is just best to give in and take time for yourself. Hope this week gives you time to recharge your batteries and rest. The fatigue is one of those things that unless you have suffered from a sah is difficult to comprehend. I say to my husband I am not physically tired but exhausted mentally which does actually spill over to the physical side too.

Yesterday I ran 8 miles with a friend (we are in training for the Great South Run) it was a great run and I could have gone further and I was not too tired after. I spend 2 hours at work checking (I am a pharmacy tech) and it floors me. I have to take a break and be quiet for a while. It just shows that it's stuff that needs the brain that causes the fatigue. 

Sounds like you have had a very hard last 20 months. Hope things are settling on the personal side now and that stress levels are coming down. There is no doubt that coping with stress post sah can be very difficult, I try and avoid it now - anything for an easy life!

Take the time for yourself this week and relax. Be good to hear more from you.

Clare xx

Hi Katy

Welcome to BTG. Your story sounds so similar to mine, it actually sent shivers up my spine! I Like you I was running when I had my NASAH in Feb 2015. I had hydrocephalus and had to have an EVD but no other surgery or long term problems. I started running again about 3 months after my bleed. I joined a Couch to 5k group so my re-introduction was slow and controlled, It's a 9 week programme and I did my 5k in July 2015 about 6 months after the SAH.

I have continued running - with a group now, my husband is not keen on me running solo - and now do about 6 miles twice a week with a few shorter runs thrown in if I have the time. It's the one thing I can do without the dreaded fatigue setting in. I don't need to use my brain to run, just my feet and consequently I can have a really busy, brain draining day at work and then run for 6 miles and actually feel refreshed. Bizarre but true!

The feelings you have had over the last couple of months sound very similar to mine and a lot of other people who have suffered a sah. Head and neck problems are common but have a chat with your gp if they persist. I only saw my gp yesterday about pain in my neck and am having an x-ray to rule out anything sinister. It's more likely to be muscular so I am having physio referral too.

Foggy feelings and not sure of the words, I know that too.

Sometimes it takes me ages to remember what I wanted to say. I hate it when people say 'It's our age, I do that all the time'. For the record. It's not my age it's because I had a SAH and I am working on strategies to help me. But what I need now is not people telling me they do the same thing but people helping me with reminding me what I have forgotten lol! ( And for the record the younger people at work are a lot better at doing that than the older ones!),

And yes I think we all suffer from a bit of post traumatic stress but that doesn't mitigate the feelings of worry. Re-bleeds are extemely rare but they have been known to happen. Drink plenty of water, take return to work slowly and always take a phone when running!

Good luck, be glad to hear more from you.

Clare xx

Hi Georgia gal

You have come to the right place for sharing and answers.

Sounds like you have had a hard time of it but are getting there. It takes time, a lot of time, much more than you expect. But you will feel better eventually, you are still early days and also adjusting to your new drug therapy which will take time.

I'm now 19 months down the line and only just now feeling more positive about everything. I have learnt how to deal with the fatigue and darned memory problems but still feel I have a way to go till I perfect that! It's so easy to think  'yes I am fine, I can do that, no problem'. Then the realisation that maybe it's not that simple. But failure doesn't need to be just that, it can be a lesson on how to do it better next time.

I hope you continue to feel good and that life returns to near normality. It will take time and you will learn a new normal but you will get there.

Clare xx

Congratulations Wendy, another Wessex survivor. We all struggle to get back to the old 'me', something that isn't always possible. Accepting the new normal is another step in our recovery, I'm slightly behind you but have found as much support in BTG as you.

Merry Christmas and a Happy 'New You' Year.

Clare xx

Hi

Welcome to BTG, we share the date of our SAH though mine does not seem as dramatic as yours. Must have been pretty scary being on the ski slopes. We had not long been back from skiing in Bulgaria when I had mine and my husband is very thankful it didn't happen while we were there.

Good luck with your recovery, I can't comment on your untreated aneurysm as mine was a NASAH. Do you have any memory problems? Keep drinking plenty and rest, I look forward to talking to you in the future

Clare x