Losing myself.

[Chrissi88]

This is the first time I have posted here.

In the past 2 years I have secured my dream job started a relationship with an amazing man and blended our family. Everything would appear perfect.

However I was diagnosed with a brain condition 2.5 years ago and I have had 15 operations on my brain since and had meningitis and 9 operations since May last year.

I have not been told I need to medically retire from work (it took 4 years at university and 3 years job training to qualify) and my mental and physical health is completely shot.

I don't know who I am anymore. My partner does not seem to understand the great sense of loss I am feeling. He just seems to think I'm poorly And I've lost my job and it's fine and I get to stay home and do whatever I want with my days.

I can't bear the thought of such an empty future I am not confident and strong anymore I am a poorly mess who has very little to offer anyone especially him!!

Not even sure why I'm posting here or what I am hoping to achieve but anyway I thought it might throw up some advise.

Thank you

Oh @Chrissi88 I'm sorry you're having such a hard time. I don't really have any advice, but didn't want to just leave you alone. Hopefully someone will come up with something helpful.
Have you explained to your partner about the loss you feel about your job? x

Does he genuinely think that being medically retired due to such poor health is the same as dossing about all day? That's shocking to me.

He can't seriously think this. Surely he must have seen the pain and devastation you have gone through, both physical and emotional? You have endured a huge amount and if he doesn't understand that then he is not the man you thought he was!

Have your doctors indicated what levels of activity are OK for you at the moment? Eg would it be possible to volunteer for just a couple of hours a week?

I’m so sorry you are going through such a dreadful time.

I injured myself and after a year of sick leave, surgeries and pain I was dismissed and have since been awarded medical retirement. It is such a different life from my previous busy, challenging role and adjusting has taken time.

I’m lucky in that several of my friends work part time and I am rigorous about keeping in touch and putting dates in the diary to meet. In the early days they’d usually just come to me for coffee or on a good day take me out for a coffee. Gradually I was able to do more and now my life looks, from the outside, to be quite normal.

The truth is a bit different. I plan my time carefully so I don’t overdo it. I get up later than average and do quite a lot of littering which is fine so long as I have some purposeful activity. I do most of our admin, do some manageable exercise which has, again, gradually increased. I know to step back and rest when I need to.

A pain management course was useful as it taught me Mindfulness skills and the concept of Pacing ( as in pacing your activity and very gradually increasing what you do with rests in between).

Last year I made some major progress and we took a more adventurous holiday, I started to learn a musical instrument and joined a choir. All physically challenging for me but in fact the benefits far outweighed to snags.

I’ve learned that I have to live alongside my condition and make the best of what I can do. It’s taken me a long time. You sound very unwell so your steps will be small and maybe slow but by keeping engaged with the world, keeping interested in the world and other people’s lives and putting small dates and events in your diary you can still feel relevant and positive. Mostly. I try hard not to moan too much.

Best wishes.