Continuing Journey

[CH56Twin]

Hello All

I guess this post is going to be a little self indulgent for which I apologise as I am positive there are people on this site who are in a far worse position than I am. Non the less this is my life and I am struggling at the moment. As I write this tears are falling and I am getting cross with myself, which makes me angry and as I am generally not an angry person they convert to tears and so it goes on.

Two major things have happened to me recently as a direct consequence of my illness and these outcomes are breaking my heart- because there is no fix.

I may have mentioned before that I work for a charity and absolutely love my job. Due to my forgetfulness on a daily basis I have realised that I can no longer stay in my job. I do need to work so not working is not a consideration. Whatever I do will not replace the job I currently have. It perhaps doesn't help as I am a lone worker so cannot turn to any-one to help me check what I may have missed or forgotten but to be fair to the clients my inabilities should not be their problem. Please do not get the impression that I am hopeless at my job because I am actually very good at it in most parts, it is simply that I do forget bits and this can affect the client. I have managed the situation in that I have discussed my issues with my employer and we have agreed that over the next six months I will be looking for alternative work. This happened at the beginning of the week and it has left me in a place where I am constantly upset and the least little thing has me in floods of tears.

My plan has always been to work as a paid counsellor. I have over the last seven years begun the counselling journey and have got up to Year 2 of Level 4. During my last year of Level 4 I contracted encephalitis just before the exams and am now re-taking the second year. I sat a mock exam last week and was unable to do the exam as I could not remember any theory at all. Not even a little bit of it. I am overly tired when I attend college and am feeling rather exhausted with the whole thing. The result is I am having to seriously consider dropping out of the course.

I am 60 years old and I just feel devastated that I cannot seem to influence my life in the way that I want to. I feel that time is running out for me due to my age and my end of work life will not be what I had planned.

I took steps later on in this week and made contact with the disabilities employment person who confirmed on the phone that my brain issues can be classed as a disability. In part this is good news.

I have also contacted my local headway organiser with a view to joining a local group - perhaps talking with other people in a similar situation may help.

It is just that I have come to fully understand what my brain illness really means to me and just how it really does affect my life.

Just in a tough place right now.

Clare

[charlieab]

Hi Clare

Before my brain went south this year my subject was equality employment law. Ive remarkably forgotten most of it in the last few months, like someone has stolen the library from my head.

But I do remember that the duties on employers to make reasonable adjustments are pretty substantial. Have you explored with your current employer the posisbility of making adjustments to your current post and/ or looking at whether you can be relocated within the organisation to a different role? Employers run a very high risk of acting unlawfully if someone is dismissed, or made to feel they need to resign, without having properly explored the options for relocating. Relocating is not the right word but I struggle to remember correct words now.

Also with the cognitive issues you will almost certainly come within the definition of disabled within the Equality Act.

R

[charlieab in reply to charlieab]

redeployed is the word.

[CH56Twin in reply to charlieab]

Hello R

Thank you so much for your very informative reply.

I don't think my employer necessarily responded in the way that you suggested they might or should. Having said that I am a lone worker and there is no possibility of relocating to another role within the organisation. I did note though she didn't argue with me when we discussed the possibility of my leaving. so as far as she is concerned it is a done deal.

I really do appreciate your reply to my original comments - thank you once again.

Clare

[Kirk5w7]

Hi Clare,

I am so sorry you find yourself in this position. I too had viral encephalitis at the age of 59 I will be 64 next week, but unlike you I was unable to return to my job, or even consider it, after leaving rehab.

It is not easy coming to terms with having to change your life when in effect time is running out, for employment I mean.

I wish I could have answers for you, I had to claim ESA, was deemed fit for work initially then on appeal this was overturned. My ESA ran out just 2 months before my pension kicked in so I cut my losses and did without income for those 2 months.

I do understand all those feelings you are coming to terms with, and daily I am reminded of those things I can no longer able to do or achieve but this is my life and I make the most of and am thankful for all those things I have managed to regain and all those things I can still achieve.

Please know we are here to help you with your journey as is Headway.

Take care

Janet xxx

[CH56Twin in reply to Kirk5w7]

Thank you Janet for your concern- very much appreciated. Clare

[Dynamite36]

I loved my job working in the building trade the physical side,crack with the lads and working outside but I’m not fit enough to do it, I watch programmes on tv about building and almost brings me to tears but I’ve come to realise I can’t dwell on it because it’s not doing me any good, so I decided that I’d go back to college even though my brains not what it used to be I can get tired and worn out but my teacher knows this and sometimes I just have to say to her I’m worn out so I take my work home for when my minds in a good place, I’m sure you can work it it some how, don’t give up if your determined you’ll find a way,good luck,x

[princess1518]

hi my husband has the same condition as you as 2 years ago he suffered a seizure he now has other brain problems affecting so much of his body he has no short term memory whatsoever and I know how he gets so frustrated by this I in turn get upset as today is my birthday and he used to do so much things now he doesn't know its it it must be so awful for you with all your studing and to have done such a worthwhile job how lucky you have managed to achieve this with all your hard work sadly if you haven't got much memory it will be extremely difficult to work we have a headway group not to far away but my husband doesn't like going out and he can stumble or walk of to the right I get so anxious taking him out the very best to you thinking of you

[steve55]

clare youre over doing it. theres tirednessand theres fatigue.

we are advised that if we work hard in the morning, we take thing easy ( do something like a hobby and less tiring and get a good nights sleep ) and not do any hard work until the following afternoon and so it carries on.

steve

[Celtic27]

Hi clare your a insperation to many people you have tried to push on in a job you love in difficult health circumstances ! I myself had to give my job up as i had short term memory as a result of a brain haemorrage 5 years a go ! Regards your job is there no way of writing down what you need to do and record any things that need attention to listen to them later on ! I would think that the charity might be able to improve your working day to enable your to stay at your post ! I wish you all the best can you let us know how yiu get on god bless david