Jan

Hi, I hope it's ok to hop on this post and ask Super Mario a question. SM Who offers family members the option of having a scan? No one in my family was offered this. My eldest sons father was recently diagnosed with Parkinson's, I, obviously had a SAH and my Dad had Parkinson's, I'm not saying(because I don't know) that SAH and Parkinson's are in any way related regarding being hereditary but I'm guessing that because they're both 'Neuro' I should perhaps suggest that my son gets checked out? Jan xx

Congratulations Clare, There's not a lot more I can add to the above comments, just a great big Thank you for being on BTG and always being here for me. I am 18 months post SAH now. If I can be where you're at in 6 months , that would do for me,? Love Jan xx

super Mario, Even though many of us haven't actually met you,I think we know you well enough to know that you weren't looking for praise, but. . . . . Believe every single word above. You are remarkable. Jan xx

Subs, beautiful, just beautiful words full of care and understanding. You made me cry. You are a very special man. Love Jan xx

Happy Anniversary Super Mario. You Truely are a very special lady, I feel privileged to know you if only through BTG, hopefully we'll get the chance to meet in person sometime. Your positivity is amazing and something I aspire to.Thank you for being on BTG. You are a Star. Jan xx

Thank you all so much for your lovely comments and Thank you for allowing me to share my 'ramblings' on here. I have a book that I often just write my thoughts in, not so much a diary,just whatever is in my head at that time,I'm not organised enough yet to keep a diary so it is quite a random collection of thoughts and hopes. Daffs, my sat nav hasn't found 'Acceptance' yet, It finds 'frustrated easily enough though!! Jan xx

There may not be a complete recovery. We're told to jump on this road to Recovery , but no one tells us about the side roads do they? You know, when we veer off and lose the way for a while. There are no rules on this road and certainly no speed limits,they would be pointless. The destination at the end of this road is not called 'Recovered' (that would be rare and give us false hope) Its called ADAPTED. The side roads take us to places such as 'Frustration, 'Fatigue ' , 'Lash-out', 'Depression and Anxiety'. We try our best not to stay at these places for too long,they're not helpful to anyone but they all get a visit now and again in order to urge us on to ADAPTED We will all get to ADAPTED in our own way and in our own time. It's a long road that somehow seems to get longer as time goes on. The important thing is to stay on it,easier some days than other days Surely If we all follow the same directions we will all arrive at ADAPTED? I can't wait to get there Jan xx

Hi Victoria, You've got a deal ! I'm phoning tomorrow to make an appointment ? You, unknowingly, have given me the boot up the behind that I needed, I've had a few down days and when I get those it's easy to put things off, so a big Thank you for that,I'll let you know when I get the appointment Love Jan xx

Hi Sarah Lou, Thank you so much for taking the time to reply and with so much info, which really helps to make sense of it all. You say about varifocals and balance issues, this is something I hadn't considered, my balance seems to be getting worse, I thought it could be related to the tinnitus that I have recently been diagnosed with, but maybe it's vision related. Maybe I just have to accept that I'm falling apart at the seams and old age (I'm 53) is grabbing hold of me ! , Thank you again. Clare, I think I left my 'normal' at N Staffs hospital, Maybe I should phone the ward, see if anyone's found it and handed it in ? ! Oh if only it was that easy ? Jan xx

Thank you for your replies and adviice, I will try to get an appointment next week, I'll let you know how I get on As always, coming on BTG helps me to worry less, just knowing that others have had the same experience, Makes me feel a little more normal if you know what I mean?, Oh, if only I was normal?(Not sure I can remember 'normal' !!). Ha ha !! Have a great day all Love Jan xx

My eyesight has got worse since my SAH, Last year my physio advised me to go to Vision express for an eye test which I did. I wear glasses with vari focal lenses, they gave me a new prescription. The eye test was ok until the part where you place your chin on the rest and stare at a dot whilst having tiny bursts of air directed at the eyes, that left me with a black square shadow in my line of vision on my left side . I was told 'Dont worry about it, if it's still there tonight, go to A&E. . What.??!! Don't worry??!! Anyway, it disappeared that afternoon and all was well. During the last few months I have noticed a deteriation in my close vision, I am struggling to read a newspaper or book, I find it quite distressing at times as I love reading (albeit very slowly these days). Sorry, I've done it again, rambled on when I just wanted to ask has anyone else experienced this, if so where did you go for help? Optician, ophthalmologist? I'm considering a cheap pair of reading glasses from Boots just to use for reading? Thank you for reading, any advice greatfully received Jan xx

Hi Deb Sorrry you're having a bad day, No consolation I know, but me too.Im waiting for the good one that should follow, been waiting a few days though! Apart from everything we've all been through and continue to live with, I really don't think this winter weather helps with mood. Grey and gloomy are not conducive to lifting our spirits. lI know what you mean about going out and seeing people,because you look the same, they assume you're fully recovered(if only!) I sometimes think I'm in danger of becoming a recluse. Its lovely you have your family for support now, sorry there are no answers in this post, just wanted to let you know youre not the only one?Good days will be here soon. Jan xx

Big Thank you for your lovely replies, I know I'll have said this before ? (but I have a good excuse for being repetitive!) It never ceases to amaze me how lovely and understanding you all are. Thank you for always being here for me, I actually can't put into words how much it means to me Love Jan xx

Big Thank you for your lovely replies, I know I'll have said this before ?(but I have a good excuse for being repetitive!) It never ceases to amaze me how lovely and understanding you all are. Thank you for always being here for me, I actually can't put into words how much it means to me Love Jan xx

Win, Thank you, It's good to know that it's not just me, like I wrote before, I have developed this 'need to know it's normal' thing , so annoying as pre SAH I wasn't a worrier, now I worry about everything Thank you again, Jan xx

Is it normal to reach a plateau at this stage in recovery? I am 17months post SAH.I feel that up until now I could recognise improvements both physically and mentally and now it's like I'm st a standstill, more down days than before and less stamina and enthusiasm (if that's possible)Has anyone else felt like this? I suppose, as with everything else, I just need to know if its normal. Thank you for reading Jan xx

Hi David I cant tell you how pleased I am that you found BTG and posted your story. You are truly inspirational when I'm feeling down, I find your post and feel ashamed of myself for feeling low. I think what I'm saying is that your words and experiences give me the boot up the behind that I need more and more these days.So a great big Thank you Jan xx

Hi Deb,welcome to BTG, It's been my lifeline. I could've written your posts, apart from the driving bit, I'm surrendering my licence. I can identify with so many of your words, thoughts worries. When I came home from hospitaI was fortunate enough to be able to walk and talk, my physical recovery was pretty good, I knew nothing of the mental recovery that awaited me, nobody tells you that bit. I don't think my GP has treated anyone who's had SAH before. I often don't want to see or talk to anyone, but then I moan if I don't see anyone, just no pleasing me! On a positive note, the bad days will always be followed by good days and the bad days become less and less frequent. I still find it hard to accept the new me because I desperately want the old Jan back, I liked her more. I get glimpses of her now and again which is lovely because it reminds me that she's still there but still needs a little more recovery time. Sorry to have rambled, I do that a lot!! Keep coming on here, it really helps Jan xx

Louise, There's not a lot I can add to the above, other than to say that you are an inspiration to me and I'm sure many othersThank you for always being there for me with your kind words aand encouragement. Jan xx

I just wanted to add, for anyone who has to go through this in the future,I worried unnecessarily about the hearing, it was actually quite a relaxed atmosphere in the courtroom. Entering the building was quite bizarre, I hadn't realised the formalities and legalities of entering the building where the courts are so I was a little surprised to have my handbag searched, I had a small bottle of water with me and had to drink some in front of the security guards then walk through the metal detector/scanner. It beeped so it was then, arms up and handheld scanner sweeped up and down. After all of this it was disappointing not to find any duty free shops on the other side! ! !?(Sorry, my bad sense of humour) Jan xx

Hi, Thank you all so much for your kind thoughts and encouragement, I am humbled by the support from you all. We have just got home now. Hearing started late, 3.35. The Panel consisted of the Judge, a Doctor and a Disability specialist. They asked lots of questions, always giving me time to answer and giving John and I the chance to ask questions They treated us-with the utmost respect. The Appeal was successful ??????I have been awarded the standard rate PIP. I'd much prefer to be working in my Sweet Shoppe, but this will help The other reason we are late getting home is John had.arranged for us to go to an Italian in the city centre, even had a naughty celebratory glass of vino! jan xx

Super Mario, Subs and Clare, Thank you for your very kind and thoughtful advice and messages. Jan xx

Louise and Super Mario, Thank you for your replies, I'll let you know tomorrow night how it went, I have to be there at 2.45pm, Not the best time as I usually 'hit my wall' of fatigue 2pm ish Jan xx

IMy PIP appeal is to be heard at Tribunal in Chester tomorrow, I am a little anxious (understatement) John is coming with me, we don't have a welfare rights person in our borough.Have any of you been through this rather daunting experience? Any advice would be great Jan xx

Hi Jen I had my Sah June 2015 I think I must have left my short term memory in the hospital. ! My memory was never so good before my Sah, My sons used to call me a Goldfish. Like everything else, it is improving,albeit slowly.I know I felt better once I was home, in familiar surroundings Your sharp, active husband/father is still there he just needs time for everything to heal. Keep in touch on here, let us know how you and your husband are doing Love Jan xx