joojoo 19/05/15
Last reply 3 years ago
Typing/touchscreen/work troubles

Afternoon all,

I have a shiny new diagnosis and am 4 months into a bout of optic neuritis. My vision is returning, but it changes every day, and Uhthoff’s likes to take charge when I do any exercise (I am/was a keen mountain biker, but now getting into running).

My noggin has a sprinkling of lesions, both old & new, which my Neuro cheerily declared as asymptomatic and subsequently discharged me. I have recently been put in contact with my MS nurse, too, who is brilliant.

I’m a scientist in full time employment – predominantly office-based – but I am starting to notice that everyday tasks, that never used to phase me, are now taking much longer for me to complete, and when I do, they are full of errors. It tends to be things that use a lot of concentration and are visually guided.Typing this out has taken me 5 times as long as it should; if I want to send a text message from my touchscreen phone, it turns out as gobbledegook, and this here forum has taken me a couple of weeks to work out! (This is my third attempt at trying to post this message this afternoon…durrr…). I have also completely lost the ability to park my car properly, so I tend to arrive at work before other people so they don’t see me spending half an hour trying to tentatively edge my way into a space!

My concern is that this is affecting my work. I am no longer working efficiently, or as quickly as I imagine my employer would expect/like. I don’t know whether to talk to my boss about it or not. (I also don’t know whether to mentiion it to my partner about – he is having to deal with MS infor overload at the moment).

My boss, and the HR department know about my diagnosis as I have had to have significant amounts of sick leave recently, but I’ve not told them about these issues. Should I?

It might all settle down, I suppose. But it might not.

Not sure what to do.

Any advice is appreciated,

Ta

Juliet

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Anonymous
3 years ago

Hi @joojoo, I was a software engineer with my own offsite date archiving company. You describe the loss of multiplexing and concentration that I experienced. It was not possible to maintain the schedule I had but also lost much speed of my own personal processing that requires discipline and work arounds to hide from others. It involved remaining more quiet in meetings and working longer hours. You will be placing a target on yourself for dismissal if you confide in your boss. This condition only gets worse but you can develop strategies to cope. BTW, I am making mistakes typing this message bc of vision problems and I am afraid loss of cognitive function either temporary by drugs used to manage symptoms or permanently by MS. Good luck to you!


stumbler
3 years ago

Hi @joojoo ,

First things first, have a read through this publication, http://www.mstrust.org.uk/shop/product.jsp?prodid=246 , to understand what you can anticipate in your working environment.

Managing MS is all about balance. Not pushing your self to hard, so avoiding extremes and over-tiring yourself.

And now , the awkward legal bit. Have you advised the DVLA of your diagnosis? This is a legal obligation. You also have to advise your car insurance company, although if they increase your premium because of your diagnosis, they will be breaking the law.

I also have to question your driving safety. I mean, optic Neuritis and having difficulty parking. Are you putting yourself, and the rest of the population, at risk? Not dictating to you, just asking the question.

Access to work (https://www.gov.uk/access-to-work/overview) is a scheme, which may be useful to know about.

And, don’t worry about gobbledy-gook in text messages. Isn’t that how everyone works? 😉


katfight
3 years ago

@joojoo when I was first diagnosed last year I was very much having similar problems. It could be that you are not recovered from your relapse and that time and rest will help heal this. I remember I forgot so much so quickly and just couldn’t remember anything I normally did on a day to day basis, my writing was also a mess and so many mistakes. Now my writing is almost 100% again and i am again back on top of my game at work (so to speak) it did take me a long time to get back here. As with the driving, I took some time out until I knew I was really ready to start again. Strange at first but i wanted to be safe. Good luck with your recovery 🙂


joojoo
3 years ago

Thanks people.
Firstly, please let me reassure you that I am legal to drive. I’ve been for my DVLA visual field test (and passed with flying colours!), and my insurance company are aware too. The DVLA are still waiting for my Neuro’s report, however.
The driving issue is with the 12 inches of space around my car only. I have a problem with depth perception at close range, and parking is a slow & cautious affair. It’s compounded by the fact that the car is new to me, too – I bought it just before onset of ON – and the shape, size, and blind spots (‘scuse the pun) are all different from past experience. I stopped driving fort he first 2 months when my sight went, but now its returning, I wanted the mobility back, but only when I felt confident. It’s just parking that’s the issue (honest, Guv!).
Thank you for the MS Trust links. Their reading material has been invaluable to both me & my family. It is so well written.
I also really appreciate the experience of others who have been through this. Yes, I find multitasking almost impossible at the moment (and I’m supposed to be a woman, apparently..), my short term memory is shot, I make lists for everything, and then forget where I’ve put the lists, and it is just so frustrating not being to able to work at full steam. I don’t work long hours anymore, as I’m just not being productive.
I suppose there is a lot going on at the moment, and I need to be patient.
Thanks. I am most grateful.


Anonymous
3 years ago

Who r u kidding? The reading material is boring! That proves u can’t see or remember.:-)


stumbler
3 years ago

@joojoo , we all have to make adjustments. And reassessing life’s priorities has a big part. In the “overall scheme of things”, work isn’t that important. I think the phrase, “nobody is indispensable” rings true.

And, you’re right, patience is key. Just don’t over-burden or over-stress yourself. 😉


joojoo
3 years ago

@orlando27 , maybe I like boring stuff?! Weeeell, I am impressed at how well the all the sciencey bits are written. The MS Trust is this week’s favourite MS charity.

@stumbler , thanks. I know you’re right. I’m an impatient patient who has only been in this job for a year, half of which I seem to have spent on sick leave for one reason or another. It’s my dream job, and I don’t feel as though I have settled in yet & I certainly don’t want to let it go!

Patience, young Skywalker…..aaaaand breeeeathe…..


tabbycat
3 years ago

My husband bought us a new car with no normal handbreak, which has taken me a full year to get used to and has knocked my confidence in driving badly. The good news I eventaully got there. New computer systems at work send me into a spin, but again I eventually get there. When I was first diagnosised I thought I would have to give up teaching, but I am still here in avery busy secondary school. I dont try to do everything and keep quiet about what I am not doing, but I manage and hopefully you will too.
Good luck.


loriwho
3 years ago

Hi I Juliet

I have had two bouts of the delightful Optic Neurtis and its a bugger to say the least, I wasn’t able to work or drive for six months as completely lost the sight in my right eye, luckily all back to normal … Or as near as normal as can be, I was working as a personal secretary for a top governor in the Prison Service, and I had his full support when I explained that I struggled to keep up some days, as as he knew he was able to make sure that I took breaks and time off if I felt fatigue …he was brilliant , my employers since have not been so great and made my life hell so you need to find a happy balance but make sure you are not over doing it as relapses have a habit of sneaking up on us very quickly….. Now nearly five years since my last bout of OPtic neuritis, I still keep a close eye on symptoms, if my eye starts to ache and I get a headache too I slow down and rest…now I seem to have other issues but that’s another long story xx take care Lori xxx

Hi,

Firstly I echo @Stumblers comments about driving……..should you be?

I am a fellow scientist ‘chemist’ in fact diagnosed 2009. I have organised with my boss to do ‘monthly chats’ where we talk about my MS and how it is affecting me. The lab based stuff has become harder for me over time so i’m now 60/40 lab:office based now. It’s working for me mostly and, on the days i’m particularly fatigued i’m just office based!!
What you must do is try to adapt. Can you think of things you could do at work if lab working for instance becomes difficult. I do more report writing for example, checking safety documents and that kind of thing.
I think we’d all like to do our original rolls fully but, if you’re not able to ADAPT. That is key!!

Not sure as well if this is possible for you to do. I make sure occupational health and HR are fully versed on my MS. I’ve also sorted a personal parking space so i don’t have to try to beat the rush every day!!

Good luck


joojoo
3 years ago

@tabbycat You are indeed a sucker for punishment. Hats off to you! I couldn’t cope with secondary teaching MS or no MS! Teenagers?! How do you cope?

@loriwho Thanks. My boss has been understanding so far – she has a son with Duchenne’s – so is used to dealing with degenerative disorders, but I am not sure about talking to her about my efficiency. Maybe just keep my head down?

@stallionicchampionic , Hello fellow geek. Please don’t worry about my driving. I don’t just rely on the car – I can take public transport too. My other half is my greatest driving critic – if he isn’t confident in my ability, or doesn’t feel safe with me at the wheel, I just won’t do it.
Thankfully my days at the bench are over (but I do kind of miss it) & I only have to deal with lecture theatres of people who aren’t sure if they want to listen to me or not…;-)

You have mentioned one thing that hasn’t been brought up by my employer yet, and that’s Occy Health. I’m no longer in Academia, but have an educational role for a charity that is currently strapped for cash. Maybe that’s why they’ve kept quiet? Hmmmmm. Might have to put out some feelers.

Ta.

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