Thank you Lulu and Matty, your comments have been really comforting to me.
I have recently been diagnosed but have only had results through my GP so am waiting to see a neurosurgeon so feel I know very little about my condition.
However, like you Matty in my darkest moments I worry about something happening to me when I am responsible for my young children. Or what if there is no-one to collect them from school because something has happened to me. Nice to share these thoughts, as it is hard to talk to my hubby about them as he has enough to worry about with my health.
But equally I am trying to think like you Lulu, nothing may ever happen so why let it drag me down each day?
Each day I have to take my symptoms as they come and work through them. As I get through things even when I am feeling at my worst, I am trying to use those experiences to make me think I can do it again.
Glad I have helped someone so soonā¦ yeh my wife wants me to open up to here but she has loads on already and I worry I am a burden to her. I am the strong one and am struggling cos i feel mentally weak at the moment.
Donāt worry yet till a least you see the neuro surgeon. Then panicā¦ LOL no only joking, people on here have calmed me down a lot and i think today has been my best day since I found out about it 3 months ago. I am going to chase up my Gama knife appointment next week, it will have been 5 weeks.
Did your GP give you any idea about time to hear from the nuro sergeonā¦
Welcome to a whole new family who you can talk to about these things! It would be great if you could tell us what you know, what sort of symptoms you are getting and people with similar experience can tell you about what was done for them.
Please start a new Topic in the New Members section, and we can collaborate with you in your own conversation topic.
I have to say that the process of discovery is very frightening but talking about it, getting simple things like peer support, and time are great healers.
Hi Devongirl. Please could I ask how old your children are? I have a one of 12 and one of 8. I have talked to both of them (but particularly my eldest) about what to do if something happens and I seem different or if I am asleep and they canāt wake me. It was a difficult conversation as I didnāt want to worry them. But they do know I have a medical condition and how to call the emergency services. The other thing I do is wear a medical ID bracelet. Some people wouldnāt like the idea of this. But it gives me peace of mind. I really hope I never have to rely on it. But at least if the worst happens the medical services will know who I am and something of my medical history. Iām glad you found this site and please do feel free to speak your mind here. I know what you mean about finding it difficult to talk to your hubby. Mine is sympathetic and compassionate but prefers to bury his head in the sand until he really has to think about it all.
Hello Matty, my name is Cody and we all welcome you to this community. I Wish the best for you and if you have any questions about anything feel free to ask, this site has so many brilliant minds willing to help. You are most definitely not alone in this. Stay strong
The kids are 7 and 9.
The eldest had rang 999 before for a different condition for me and I have been teaching the youngest to do the same.
I am not sure if I am ready to tell them about my condition yet though.
The medic alert bracelet is something I am defo going to do when I have more details of my condition. Thanks for the advice.
Kate, I found my mind wondering late at night while trying to go to sleep, Its difficult to shut off the dark thoughts, But you have your husband to support you and look after your children while in the hospital if needed, I know that this would affect life and work etc, But its workable , Just focus on you and trying to relax and not worry as this will make you feel so much better. Take care
