CharlieD

Hi Marion, 

Sorry to hear you have had such a difficult time. I have many times throughout this journey where I have resented the change in me and tried to ignore it but unfortunately it just isn't possible. I can't offer any advice on the medical side but I can say listen to your body. If your body is saying you need more rest take it. I find when I over do things the next day will be very hard. 

This weekend I arranged to go to a Xmas Market in Germany with family( I currently live in Amsterdam). We drove all the way and spent a whole day there and then drove back. I powered through but knew it would probably be too much for me.

Yesterday I couldn't think straight and had awful headache so spent the day in bed. TBH I would still do it again as I don't want to give up those days but I know it means recovery time and I try to plan for that. When the fatigue is too bad I struggle with words. I was someone who never stopped I filled my day's every day.

I agree keep chasing the appointment. Perhaps call the hospital and speak to the department to ask about the waiting lists and put your name down for a cancellation. But in the mean time the best advice I got and took (from this forum) was listen to your body and be kind to yourself.

Hi Debbie, I do suffer with headaches and the bad ones usually go after a day or 2  or at least ease but sometimes it will last 5 or 6 days. I get worried and say to my husband, have I ever had it for this long before and he always reminds me I have and not to panic. I think it's only natural we do but headaches seem to be very common post SAH.

Jess, I loved reading your post, as a mother of young girls it was my first thought I just want to see them to adulthood and it's good to hear you thought the same and made it. 

I don't know who it was that told you you should be OK after a couple of weeks, but I have maybe heard of one person who had that kind of recovery, and I have read alot over the last few years so please don't feel there is anything unusual about not feeling recovered yet.  I found a couple of really useful and reassuring documents on NHS sites but had to trawl through to find them. This one covers alot and gives a good outline. 

http://www.srft.nhs.uk/EasysiteWeb/getresource.axd?AssetID=53327&type=full&servicetype=Inline

Hi @Esedlock

I haven't been on here in a while but like to check back in as I always remember how incredibly hard those first months were and people on this site gave me help and support when I needed it so would like to do the same for others.

I definitely found the new normal extremely difficult to accept. I am someone who has always pushed myself, for me I have never managed to get back to exercising at the gym but I cycle and walk alot and do yoga as they don't trigger headaches. I think it is very important to listen to your body in the early stages.

Everyone kept telling me it's early days but until you are through those first 6 months or a year it is hard to see that. Take one day at a time. Anxiety was and to be honest remains a huge part of my life post bleed.

I have had therapy that made a big difference. Night times were definitely worse. Post bleed I started listened to apps such as Calm at night that help and also podcasts as a nice distraction. Perhaps they could help you.

Anyway I hope you continue to recover and any questions feel free to ask on here or PM me. 

Take care

Charlotte 

Hi Adam

I had the same type of bleed as you. I second what everyone says, the doctors often give that time frame and it isn't very helpful as it can set you up to fail somewhat when you don't feel recovered. My surgeon didn't actually give a time frame. He was great at explaining that the damage is from the blood being in the brain and that how it bled doesn't affect the damage it has done and that recovery is often long as it needs to heal.

An aneurysm does change the treatment of course. For those of us who did not have a treatment I often wonder would the anxiety be less if you know what caused the bleed. Then you have to worry about the treatment and problems with that so just different worries i guess. 

I really feel for you have to go through all this with no family around it must have added to the trauma. 

In terms of my recovery, for sure the first year was the worst, generally the first 6 months even more so. There are times when it felt like I was doing better and then I was going backwards. Generally they were temporary setbacks. For me I am a different person than before but I am doing well and some of the different is bad but some is good.

I have limitations due to fatigue mostly, thought it is a lot less than in the first year.  I recall anxiety being unbearable in the first few months but over time it does fade. For me it hasn't gone but i live my life (when Covid lets me) and try not to miss out on things because of it.  I have husband, kids, dogs, cat and a job and the SAH hasn't stopped me enjoing them🙂

My best advice is what I read from so many people, be kind to yourself, if your tired rest. Don't be afraid to make the changes you need to to help your recovery. Everyone said its early days and it really is for you. 

I hope any of that is helpful.  If you have any questions just ask. 

Take care

Charlotte

I am very sorry for your loss. Whenever I read anything from Win I though she has such a positive attitude and was always trying to help others in their recovery . I was very sad to read this news indeed. 

xxx

Thanks, found it. Donation all done. This is a great site and has certainly helped me through the tough times. I hope it continues to do the same for others. 

How do you make a donation to the site? I can't find a donate button. Might be because I am on mobile.