TALKING

[1725catherine]

Hi.....I am 58 years old and suffered a massive stroke, decompression of the brain and a necessity for high oxygen. I spent four months in hospital and very luckily most of it at the John Radliffe hospital. I have been at home with 24 hour care and now on my own for a few weeks. I still have Physio and occupational therapy as I tend to fall and get very tired. The most difficult thing I find is that all doctors are amazed at my progress but no-one in my direct family will talk about it. I have three children who were in Oxford for a week, a sister who visited, a mother who went into my new house and was kind in clearing it but I feel rather violated by it as she hired a skip. and many things have been 'lost'. But no-one in my family will talk to me about it. Chapter closed. No longer a problem. Really feeling rather desperate as I feel so much is held from me. And it is problem 'closed'. For them maybe, butI doubt it and definitely towards me. I feel an urgent need to talk about it......any ideas.

[Marinamac]

Have you tried contacting the Stroke Association they have lots of information. They will also have numbers for groups local to your area. I'm sorry to hear how you are feeling. I had a right lateral medullary stroke in January and although my family are very good it is hard for me as I am sure it is for you to come to terms with what had happened. Take care and I hope this helps in some way. Please get in touch if you need to talk

[Lwarriner]

Hi. I'm sorry to hear all that has happened to you. I think it's very difficult for families to come to terms with too, so this means they can't really be the people who support you emotionally in the process of coming to terms with the life changing event that has happened to you. I can see why you feel violated by them 'sorting your home out for you'. Do they know they went too far? Perhaps at this stage it might be most useful to get emotional support from outside your family. The stroke Association might have some ideas or your GP might be able to help with a counselling referral. Counselling can give you space to talk everything through and help you come to terms with all that has happened without judgment. It can help to talk with someone who isn't emotionally involved. Good to hear you are home and coping. Very best wishes.

[Hidden]

Hi Catherine; firstly, you are amazing to have gone through that and have your cognitive and motor skills in good shape. People can have a heart attack and it's talked about openly, and there's usually rehabillitation to get you back on your feet. Yet with strokes and cancer there's a reluctance to talk about it, so we survivors can end up feeling isolated and maybe resentful. If the family won't talk about it face to face, how about a phone call or an email? It'll be difficult to stop the negative aspects coming through, but just say that you would like to chat about it (rather than use the word discuss, as that sounds serious). If there are areas where you need help you need to talk about it. If things still aren't opening up, find out from the stroke section in the hospital or your GP about councilling; maybe your family need councilling too. It could be that your family are fearing another and more disabling stroke.

Come back here and chat as well. None of us in this forum wanted to be in this position but that's where we are, and sometimes there seems be a sub-conscious level of blame. Six months on I'm still understanding my emotional changes, so I'm never certain whether my perception of situations is accurate or a bit skewed with the stroke.

John

[woodycat3]

I had a stroke 2014 I am still recovering ,and nursing home for now and i want to go home,Stroke ass has helped I can walk now small distances using a frame maybe they might be able to help you ,there,s always someone their to talk to you if you have a problem.

[elizabethfleming]

mabe u should let your family and friends no how u feel u could say something like i no i h admasive strokr but i can still understand what is going on .i had my stroke 22 11 2015 which has left me with short term memory problems poor concintration lot of weekness and pain on left hand side went throu to edinbrough for driving assesment could not do on road part as need a letter from d v l a to go on road for one day.as i have made a mess of the off road part dont think i am going for the last part as the ot gave me five words to remmember told me to remmember them distracted me asked what the words where and a could not remmber asked me to draw a cube did that wrong asked me to do a few other easy taskes that i messed up so am thinking i have allready failed it so no point going back ,am feeling very depressed and flustrated just now at the stage am thinking what is the point in trying any more feeling very sorry for ma self dont no if it the time of year or just the driving thing was driving for 30 year before stroke stole my life need help dont no ware to turn any more

[janet12 in reply to elizabethfleming]

Hi that's your mobility gone what a shame my husband had to do retest but luckily he got through it. People don't realise the frustration you must be going through. I hope in the future things will work out all the best.

[elizabethfleming in reply to janet12]

HAVE DONE FIRST PART OF TEST OFF ROAD PART BUT I THIINK MADE A MESS OF IT CANT DO ON ROAD PART TILL D V L A SENDS LETTER OUT AM FEELING SO LOW JUST NOW MY WORLD IS FALLING APART WORK SAYS I NEED TO GO FOR ILL HEALTH RETIREMENT BUT I FEEL I AM TO YOUNG BUT IF AM HONEST CANT DO MY JOB AS IT TI HEAVY HOME CARE ,NOW NEED TO BE REALLY FIT AS THERE A LOT OF EQUITMENT TO US NOW AS PEOPLE COME OUT OF HOSPITAL SICKER SO BETWEEN DRIVING AND WORK AM STARTING TO THINK WHAT THE POINT FEEL JUST NO POINT ANYMORE DOESENTM ,ATTER HOW HARD I TRY THERE SOME THINGS U CANT BEAT SEAMS TO BE MORE MENTAL THAN PHSYCLE DAMAGE THAT BEEN DONE AS CONCINTRATION SHORT TIME MEMORY AND PROBLEM SOLVING ALL GONE STILL GET TIERED NOW STARTING TO THINK MABE MY THIROID IS PLAYING UP GOING TO ASK DOC TO CHECK ANY WAY HAS I DO HAVE THYROID BROBLEMS

[janet12 in reply to elizabethfleming]

I hope there's light at the end of the tunnel for you your so young to be going through all this maybe you need to confide in someone I used to be carer for my son till he passed away and I used to be with the carers centre & used to meet people who would had similar problems it helps when you know your not alone good luck

[elizabethfleming]

for got to say i am 53 was 52 when had the stroke

[1725catherine in reply to elizabethfleming]

I am very lucky with how things worked out but any symptom, I worry that another stroke is imminent. I just guess I get tired and negative. I was told by a consultant who treats geriatric patients that I had 'plateaued' and would be lucky to jump start again. Then although I had worn a heart monitor for a week each time and it just fell off although was supposed to be wearing it for over a week, he wants to do it again. Pretty much waste of space. Will probably ring Stroke Association as there are times when I feel absolutely desperate...........catherine

[elizabethfleming in reply to 1725catherine]

hi can u still drive after your stroke

[1725catherine]

Yes......but I made sure that I started with driving lessons. And I have also made myself rules, like not driving in the dark etc...........

[elizabethfleming in reply to 1725catherine]

i hate driving in the dark it so much harder

[elizabethfleming]

HAVE BEEN TOLD NOT ALLOWED TO TAKE DRIVING LESSONS AS I HAVE NO LISENCE DVLA HAS IT AND AS I HAD A FULL LICENCE CAN NOT GET A PRIVISIONAL SO NOT ALLOWED TO GO ON THE ROAD JUST NOW HALF THE TIME A DONT THINK DOCS NO THE RULES AS THEY GET CHANGED ALL THE TIME HOPE U FEEL BETTER CATHERINE AS I FIND STROKE VERY HARD TO DEAL WITH MORE SO AT THIS TIME OF THE YEAR AND A NO WHAT U MEAN BY NOT DRIVING AT NIGHT AS IT IS A LOT HARDER HAVENT DRIVEN IN OVER A YEAR

[janet12]

Im sorry to hear your struggling. Your family need to realise a stroke is a long term thing. My husband had one 4 years ago at 56. He still as problems with his leg but he says people don't see what's going on inside his head, after all it is to do with your brain. He is definitely not the same person anymore and you need to talk about the way it's affected you. Everyone as a different outcome. I hope you can find someone to talk too . Wishing you all the best

[1725catherine in reply to janet12]

Thank you - you summed it wonderfully. My family just don't want to know, so refuse to talk about it I am sure that I am different from before but not too different or is that wishful thinking.i have had a difficult time from my children recently who treat me as a baby apparently because I fall about a bit I am looking for a stroke group to talk to or just a counsellor.

Thank you for your thoughts.

[janet12 in reply to 1725catherine]

I hope you find someone to talk too as they say you can't pick your family? I used to look after my friend until recently nobody cared about her & now not even a call off her son to say thankyou but I know I made a difference

[elizabethfleming in reply to janet12]

at least u no that u made a diffrence to your friends life .got a letter in from my work today they want me to look at ill health retirement am no sure a want to go down that rute but it no ma choice no going with out a fight .i was really silly tryed to go back in july as the works medical adviser said i should even though my own gp said no at the time my thinking was still wrong and a thought as the works doc said i had to go then had to do as he said just made things worse as it was far to soon going back 6 month after a stroke was crazyto late now as they going to try make me go now .it difficult for works as i work in homecare and they worried i make a mistake ,they should have given me the year as there a big diffrence now

[elizabethfleming in reply to elizabethfleming]

your friend was lucky to have u bet u miss hur now do u go to any stroke groups

[janet12 in reply to elizabethfleming]

No just take day by day husband being referred back to neuro physio as his leg keeps giving way he had 12 months at special gym when he first had stroke funded by stroke society so you should speak to them it might help

[elizabethfleming in reply to janet12]

tbe after care with strokes is shoking was at docs to day told hur about work but she wasnt intrested just said wait and see what happens with driving that just makes things worse if a fail driving ma life is over as then that ma job gone to just puts more presure on me. it would be ok if i had help .but it just me that pays pills keeps food on the table .a seem to be getting worse as time goes on cant get any one to listen

[elizabethfleming in reply to janet12]

hope your husband does well u are both lucky to have each other hope your husband has not changed to much ,wish people would understand no one choosys to have a stroke and it so hard to deal with every day it like nothing u say matters as u had a stroke must have been your own fault,sorry for going on a bit just get so flustrated at times have asked for bloods to be taken as the tieredness just not lifting after what has been the longest 14 months of my life

[1725catherine in reply to elizabethfleming]

I am actually divorced and totally agree with you. If I had not remained semi-conscious for the four and a half months in hospital, I am not sure whatI would have done. To finally get out of the hospital as I needed five visits a day, was to employ someone for 24 hours cover. My immediate family just think I should get on with lif as if nothing had happened, counting my three children whom at least I see. It just feels like two steps forward and one backwards,

[elizabethfleming in reply to 1725catherine]

i no it is so hard life is crule i am lucky as my 27year old son and 3 year old granddauter stay with me my sun doesent understand and thinks am just being very crabit my grandaughter keeps me going have 5 sisters not seen since xmas ruby 3 will say your silly arm and leg not working gran as i still have a weekness on left side as far as strokes go am not that bad worked in home care so no how bad they can be just wish a could lift the tiredness.am hoping a will get back to work but my job can be heavy will just need to wait see what happens o nearly for got have a mail friend as i am dievorce as well dont no what a would have done with out him he has been amazing

[elizabethfleming]

PEOPLE DONT SEEM TO UNDERSTAND THEY THINK AS IT WAS OVER A YEAR AGO SHOULD BE OVER IT SOME THINGS U CANT BEAT NO MATTER HOW HARD U TRY

[janet12 in reply to elizabethfleming]

It takes a lot longer than it it depends on the individual all the best

[elizabethfleming in reply to janet12]

thank u