One step forward, two steps back...then forwards again : )

[Kittilyn]

Hello

I just wanted to add an update on my FND journey, in the hope that it may help some of you here. I personally find that I benefit a lot from reading all your posts, for which I am very grateful.

I've written before about my diagnosis in April this year after a spell in hospital with left-sided stroke-like symptoms, and also about how, after a LOT of rest, I was going to try a phased, gradual return to my full-time job.

So, basically, I'm now two weeks in to my return to work. It's been great to see my colleagues again, & do a bit of a job I really enjoy. The main thing that's happened health-wise though, is the re-appearance of pretty bad fatigue : ( I am on half-days only at the moment, & the idea is to build up to full-days. I am hopeful, but also trying to be realistic, especially now that I'm seeing how very tired I am getting.

Just before I started back, I had managed, through careful pacing, to be feeling really well, with very few FND symptoms. I've been taking B Complex & Vit D3, plus eating good food & being positive. Now, well...on the days I'm not going in, I am basically back to being exhausted, & mostly in bed!!

So...I guess I have to take it slow - I am being extremely mindful not to overdo it, cos I do NOT want any kind of severe symptom relapse. But, oh my, I do feel really sad at the realisation that I may not manage to get back to work fully after all...I guess I will have to consider part-time. Hmm...We'll see.

I'll try to post again to let you know how it all goes.

Good luck to everyone, wherever you are in your own FND journey. X

[thinkin]

Hi,

I tried going back to work and it was a total failure. There is this build up thing that people think that they we cured and in a way they take control of how much we can comfortable do out of our hands which isn't good. It does sound like you are going backwards.

Remember that 75% of what you are comfortably managing. Landing exhausted in bed on your days off is not managing. Maybe look at doing something where you can work from home at your own pace.

Even if everything completely disappears you are supposed to leave it 6 months before trying anything work like. That was Prof Edward's advice to me and I so, so wish it had sunk in and I had taken his advice seriously. Hoisted by my own positive attitude. That's the trouble with FND when we have good days it's almost like a high and we over state our abilities and the vicious cycle continues.

Sorry I don't want to be negative, I just want you to be aware that you are not out of the woods. I learned the hard way. The very, very hard way.

xx

[Janandmike in reply to thinkin]

Thank you for your comments. My husband is so poorly that he had to to leave work dec 2016 I rather doubt he will return. He's only 58

[Kittilyn in reply to Janandmike]

Sorry to hear that janandmike. Wishing you both well.

[Kittilyn in reply to thinkin]

Thanks for your reply thinkin, & sorry to hear what happened to you. Hope you're doing better these days.

After being really tired & a bit wobbly over this weekend, I am going to speak with occupational health on Monday & suggest I work from home when possible next week. They've been helpful so far, so I'm hoping it'll be ok. We'll see...

[Chingona]

Hi Kittilyn,

I just finished my second week at my new part time job too! It’s a BIG adjustment I was freelance photographer and reporting for a newspaper about 15 hrs a week and now I’ve taken the position of office manager on top of that. It is nerve wracking to wonder if it’s something I can handle. And the first week I did get some tremors and other symptoms, luckily on my day off( i was also on my period, seizure trigger and weaning off the THC, thinking maybe I will stay on THC)Plus both my kids begged to join flag football, so my first week was exhausting, though I’ve had fatigue and it wasn’t like how your experiencing, which I’m sorry to hear about, i think it’s one of the most frustrating symptoms.My boss and my co workers know that I have seizures, but they’ve never seen me with full blown symptoms, so it’s in the back of my head that Its possible to have that happen at work, i know i would feel completely embarrassed. So far my challenges at work are short term memory loss, I make a point to write everything down, but I have put wrong dates or spelled names wrong in the newspaper and that SUCKs and I have to print corrections! Ugh and I’m learning new computer programs I’ve never used before, so just feel like I’m making small mistakes. I’m trying not to be hard on myself and I really do love being back at work. My brother passed away in March and I feel like I needed a break from being home all day thinking about him constantly. Anyways, I hope your adjustment improves, we have to remember to kind to ourselves, it’s not like it use to be.

[Kittilyn in reply to Chingona]

Hi Chingona, ooh well done for taking on the extra responsibilities & good luck with it all! Your work sounds really interesting, & it's great that you love it. I really enjoy my job too (although the way it's managed these days isn't so great; but that's an issue in many modern workplaces, I'd say!)

I can relate to the role a good job plays in engaging you positively, so that you're not home alone thinking about things that make you sad (I'm so sorry about your brother). Hope it all works out!

I know what you mean about worrying you'll be unwell at work & be embarrassed...I worry a bit about that too. In fact, my co-workers have been encouraging & saying how well I look! (But that comes with it's own issues, because then I felt annoyed that maybe they didn't think i had anything wrong after all...!! ) Anyway, the priority is to take care of ourselves, not worry too much what others think...usually they're fairly caring, I find.

I feel a bit better this evening. But not as well as I was before going back. So I'll rest again tomorrow, then see how it goes next week. I hope work will support me, & give me the pace to build up that I need.

Yeah, it's true, things ain't what they used to be : ) But I'm sure we can, nevertheless, find ways to have a good enough quality of life, doing things that enrich us X

[Leesaloo in reply to Chingona]

WoW you go girl, you are such a positive, powerful person to follow (unsure if following you now) 😳😳😳 will try to work out what I’m doing 👍