Frustrated

[shirleysgirl2016]

So, I’ve gone back to work, part time after 4 months off and the worst episode yet. I’m really struggling to get through my day, can’t seem to type or formulate a coherent email, legs start to get weak by about 11 and by 3 I’m walking funny, which is being noticed,I’m convinced someone is after my job and I’m just so frustrated. Does it get easier? I’m finding it very difficult to accept that I can’t go back to the amount that I used to do and that I’m pretty much finished by lunch. I’m sorry to moan I know there are many here that can’t work but I just want to know if anyone who has managed to work, will it improve? I very much felt identified by my job and feel I have lost that along with any sense of my old life ☹️

[Lucy-15]

Hi I absolutely understand your frustrations! I too have had to reduce my working hours after 2 months off last summer. Now I’m managing 9-2pm from home, but trying to get back to full time if possible soon

As I could change my job to work from home, I am lucky in that way. However, tomorriw I’m going into the office and know it will feel like a marathon! My walking stick will probably be out, as soon as I leave my car. It’ll be more than double the 2k max steps I manage on my better days.

Think your going amazingly to be at your workplace every day

it’s taken me over 3 years to slowly come to terms that I have a ‘new normal’, and IF I pace myself I can manage just, without becoming very immobile.

Can you maybe, speak to your manager, to explain that to function and be more productive 😉 you need regular rest breaks throughout the day.

Think they will make a big difference. Your body is ‘shouting’ at you to rest when your ‘walking’ or typing is tricky

I’m looking into ‘drag net’ think it’s called, it’s software to put into my PC so you can speak your emails into a headset. Instead of typing them - would this help do you think?

I’ve also recently discovered a facebook page called ‘fnd life without limits

It’s for all invisible chronic illnesses it’s been very helpful too

Hope the rest of the week goes ok .... keep smiling

Lucy in Brighton

[Cookiecc67]

Hi Shirley,

I don’t know where you are but if in the UK you can contact Access to Work a government funded organisation that can carry out Work station assessments to see if specialist chairs, voice activated software for typing and a whole lot more. will help alleviate symptoms. Depending on the size of company they can help with the costs. If there is a particular aspect of the role causing you issues they can also pay for support workers to help with those aspects of the role.

As Lucy said you can speak to your employer and discuss reasonable adjustments under the Equlaity Act. There are lots of ways your job can become easier.

Cheers and good luck

Colin

[Leesaloo]

Hi, I've been off work now 3 years, have been for 1 month intensive rehabilitation for FND at queens square London last December. I did well in rehabilitation as I've accepted I have FND and took onboard everything they could teach me. I'm now walking short walks with my dog everyday which I couldn't do before as leg dragging. I've had to leave my job to volunteer as they wouldn't accept me volunteering while I had a contract to work. As I live far away (walking distance) no bus route from anywhere I'm totally isolated until I can drive again. If I have no more seizures I can drive this March. My progress is so slow as when I get tired my symptoms all return so I have to be so careful not to overdo it, it's such a fine line between trying and not overdoing it. My main aim is like you to get back to work, to feel a part of society again as very lonely everyday. Like you I will struggle so the hospital suggested volunteering to get to know my limits at work. If I went back not knowing my limits and relapsed I have to start again and my job would let me go. You've done so well being at work. Although I'm not cured I have techniques that help me manage my symptoms BUT it's the fatigue that is the hardest to manage. Whenever I read on here that someone is working it gives me hope. Thank you for that. Reading what you have wrote it seems it's the fatigue that has to be managed everyday, hopefully your manager could help you to manage it while your working. Good luck 😉

[Bren10]

I SO feel for you.

I am lucky enough to be trying to ‘work’ from home but, like you, can only manage a morning and then crash out the following day. Double vision and the difficulty of typing is a real challenge and the brain ‘fog’ means I’m trying to remember what I am supposed to be doing. Voice activated software would be great if I could speak… After a couple of hours of concentration on the computer I’m lucky if I can speak; it’s either slurring or completely gone. I have to double check what I have typed in the e-mails for, as with my conversation, I use totally the wrong words and forget mid-sentence what I am talking about. The ‘phone definitely has to go to message as the person on the other end would never understand me. I’ve more or less cracked the walking bit as, if I feel my leg giving way, I usually can use distraction and get it back again.

I guess it’s all about ‘pacing’ – so frustrating when I've always been active and used to multi-tasking, and I see the work piling up around me and I want to get back to being ‘normal’. I'm lucky that I can 'pace' at home. I can't imagine how difficult it must be for you when you have to go to work.

Some days I can cope with the fact that everything now has got to go at a slow pace and I can only do one ‘thing’ per day – it’s work for an hour on the computer OR shopping, a bit of ironing OR getting a meal. But some days I forget and then pay for it the following day. BUT a sleep for a couple of hours with some nice soft music, a scented candle, low lighting and telling myself NOT to feel guilty because I’m doing nothing usually does the trick. I’m SO lucky that I can do this as things could be so much worse.

I think you are doing amazingly well to get out to work. Well done....!!! All the lights and the sounds of an office environment would make my symptoms so much worse. At least I am on my own at home and it is very quiet. Look after yourselves and, Lucy, don’t go trying to do too much…!!

[shirleysgirl2016]

Hi all. Thank you so much for your replies. Was feeling very down yesterday but you have all given me great ideas and made me realise I’m not alone in this. I think the problem with having an ‘invincible’ condition is that when you do go back to work people forget that you can’t do what you used to. If we had a broken leg would be so much easier!!! Thank you for all the support, I’m off today and trying to keep active but also resting compared to being at work. As I work in a school with SEN kids it’s very draining but if I can start to manage the admin side of things with your suggestions at least I will have more energy for the kids!! Thanks again all

Kelly xx

[malalatete]

Hi everyone. Check out the MEA - myalgic encephalomyelitis Association - website. A lot of docs are saying FND whereas in the past they might have said ME. There is a lot of information and guidance there.

A lot of what I read here sounds like what I was told was ME in the '00s. The self-management guidelines are still worth looking at.

[shirleysgirl2016 in reply to malalatete]

Will check that out. Thanks!!