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I miss me

I am feeling seriously down today. I have a 4000 word essay due in on Tuesday and I have just realised it's not going to happen. I can't seem to focus or organise anything. I have 800 words of rubbish and I've been working on it for weeks. Weeks of reading and thinking and trying to organise but it just hasn't worked. 

I think the worst thing about it all though, is the fact that I feel like I've lost a really really important part of 'me'. The essay is part of a BSc in Acute Mental Health Care that I'm doing. The very first module. Before my diagnosis and my brain turning into mush I completed an Advanced Diploma in Mental Health nursing. Before that I did a BA in English Literature. I was smart. I was academic. This kinda thing was childsplay to me. Now I just feel stupid. Cognitive deficits. I know I'm not stupid but that's just how I feel. 

I can handle the numb hands, the trouble walking from time to time, the occasional blindness yadda yadda. I can't handle feeling so thick. My brain has betrayed me and I'm feeling a little bit heartbroken. crying1

I think we can all understand how you are feeling. It’s grieving for the person you once were and it’s very hard to get your head round it.

I have trouble concentrating on long conversations and would rather watch a short programme on tv than a long film as I cannot easily stay focussed. I know that if I was still teaching I would have difficulty in concentrating on the lessons and I miss teaching children so much but my physical problems preclude me from doing so.

Keep your chin up, you are entitled to feel down but take it a day at a time. This is not the end for you.

Everyone on here is always happy to listen, stay in touch,

Thinking of you,

Teresa xx

I spoke to my MS nurse about getting a letter to support mitigation. 

I'm not sure what the rules are. If I submit at a later date I'd hate to have to chose an entire new subject. 

I've never failed anything in my life and I've never given up on anything in my life. I hate this. 

I maybe should've picked a more chipper subject matter. I've spent the last few weeks reading about suicide in my spare time. Supportive observations to manage risk in patients experiencing suicidal ideation. 

The crazy thing is that I don't need this degree. It's not cost me anything. I won't get sacked if I fail. I still have my career as a mental health nurse. I just feel thick and I hate it. letdown

I understand that feeling of not giving up on anything, I am exactly like that but I think you have to learn to compromise with yourself. As you say, you won’t get sacked if you fail. However, you probably won’t fail but maybe it will take longer to achieve than you expected.

Don’t be hard on yourself, you are not thick but battling a chronic disease/condition. Give yourself some breathing space and take things bit by bit. You’ll probably get to the same destination but by boat not by aeroplane.

Don’t beat yourself up, be kind to yourself,

Hth

Teresa xx

I hate it too, and I feel for you.  It is so hard when you need to shift the mental gears up a bit, as you have done effortlessly all your life when you have needed to, only to find you are stuck in second.  

Redefining failure and success - and keeping on doing so, to keep up with ever-changing circumstances - is a tough task, but it is a very important one if we are to make a decent life for ourselves.  

Good luck with it all.

Alison

x

 

Thanks guys. I'll speak to the university and my personal tutor tomorrow. 

I guess I need to approach academia in a different way now. I left myself 3 weeks to do what normally takes 3 days but it still wasn't enough. I'll have to give myself the full 3 months next time. 

 

 

Oh what a shame, when you are obviously a very intelligent person.

BTW  I miss `me` too.

luv Pollx

I have a great deal of empathy towards your dilema.  I too used to be able to put essays together without hassle, then my brain fog would decend.  I wrote the best pieces in my sleep but could I during the day - nah.  Then someone told me to have a notebook and pen at the side of the bed and hey presto, the ideas flowed, something to do with our brains being at their best in the morning?

 

I think dealing with people in acute mental health states, after experiencing another version of you (due to ms)  would give you more insight into what perhaps the patients are going through, the fear, the disappointment, the disorientation, never knowing from one day to the next if coherence will come.  You are actually better placed than you think.

 

I personally would try take a shower, chill with a glass of milk, draw a circle, brain storm and use the idea of you experiencing some of what your patients might be should help tremendously.

 

I hope you can go forward, it would be such a shame for you to miss real life experience due to this s.dding ms.  Battle the beast and win your honour.

 

x

 

 

I spoke to my tutors at university today. They are going to support my request for mitigation. I'm going to ask if I can defer submission until the next assessment date. My MS nurse has written a supporting letter. I hope it'll all go okay and they will okay my request.

A little bit of time off might be just what I need. I know now that I can't just leave 3 weeks to do an assignment. I need to acknowledge that my brain has changed. I'm not stupid. I'm just unlucky. I have been given an extra hurdle that I need to jump overl. I will do it. 

Thank god for supportive friends. 

Also, thank you to everybody on here. It feels nice to know that I'm not the only one who struggles like this. 

 

Having had similar problem done a bit of reading around this, things I've found-

Mental tasks can be difficult due to four main points/stages:

concentration,

memory and retaining info, 

organising info/ideas,

articulation/expression of ideas .

The four stages rely on eachother so if one of them doesn't work the whole process is very difficult, but it's not that you are "thick" over all-just a problem with one element (i.e you might be able to concentrate but can't retain the info. or you can retain it but can't organise it etc.) 

These things can be difficult due to cognitive changes that can happen in MS but they may also simply be due to factors like  fatigue/mental fatigue, depression, stress, emotional impact of diagnosis, side effect of meds-all contributing to what may seem like a cognitive change. It may be a cognitive change- you could see a nueropsych to assess this? 

Not sure if this applies to you at all but I had a long period away from studying, and found things seemed a bit sluggish when I resumed, think this happens MS or not-lack of engagment over an extended period caused everything to be a bit slow/foggy, brain is like a muscle in the body that needs to be used and kept active, things may improve once you've shaken the dust off? Also just to say, I have found like any other symptom- it may be transient and improve etc.

I find it helpful to pace myself with mental activity just as I would for physical activity,take breaks/ use my good hours, pkan nothing either side etc. Also I find repetition very useful when reading/learning new things, I expect nothing to "go in" the first time I read something, I also find it helpful to explain things I've learnt to other people as a way of getting them to stick in my mind.  For writing, I find it useful to write down whatever I can (even if it's a "bit thick") and then come back to it when I am bit more focused/articulate etc. I'm also thinking about doing all the sort of brain training that's around at the moment and even things like puzzles/ suduko etc. Really understand how you feel - perhaps understanding the exact causes will help you find solutions. Good luck with your work-try to enjoy it!

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I’m so glad you’ve spoken to your tutors - you no longer need to worry over that deadline. Give yourself a break and rest now. You may find you return to your work with renewed vigour. If not, you now know that you need more time over each assignment.

Good Luck with it all and stay in touch on here.

Wishing you the best,

Teresa xx

I recognise a lot in your story 'S', even if it relates to a different 'era' re age and country of origin. I am 48 now, I now wish that I would have known then what I know now. Was only officially diagnosed at the age of 40, but have enough reasons to think that the first symptoms appeared in my teens ('am' SPMS now).

In those days, I 'suddenly' realised that I no longer seemed to be able to concentrate properly and for long, although I have always been interested in 'learning'. And just like you, I also remember having silly cognitive issues that really made me look stupid! (you forgot to mention frustration which used to follow soon after.., and still does!).

Again, If only, if only I would have known then what I know now. It's too late for me now (also because of other family circumstances) but it is not too late for you, believe me! As you HAVE a cause for your let's call it 'shortcomings' caused by MS, you can take action now and try to accept that circumstances have changed and 'integrate' these (if this is the right verb...).  If you cannot achieve 'things' this year, do it next year if this is an option, but do not get placid (as I did). You are still young and you do not want to have regrets in the years to come. Of course you also need to balance out one and another, and to be realistic. No one knows what the future will bring so why not stay on the positive side. Good luck, I'll stop rambling now. 

Hi when i realised how people felt i dont feel so alone it is grieving  at least i felt when my brain went  to mush its like a part of me has gone, Im just starting my next module in the degree and dreading it probably more so than starting the tysabri soon, sending out warm thoughts to you allxx