How do I know if I am capable of working ?

[Learner1]

Yes, I feel fortunate to be in this situation. It's against the law for employers to get rid of us, but I know it happens anyway.

Just wish it were enough to approach paying for my medical bills...

 

[NelliePledge]

hi I was off work for a few months after i was first diagnosed then was encouraged because everyone wants to get you back to work and you think that is the right thing to go back on a phased return. Because I work for a public sector employer in the UK they follow the rules in all the equality and employment law about reasonable adjustments. And I started by doing a couple of hours twice a week working at home (its a desk job) and gradually increasing over a few weeks. I hit a maximum of 3 x 5 hours a week about 12 months ago and have been working that amount of hours at home ever since = less than half of the time/pay I previously worked. Im lucky because Im in my 50s and have already paid off my mortgage on my little house so I dont have to worry about big bills. Im struggling at the moment though because there is one of the regular reorganisations going on and I face the challenge of finding a new role on a new team which I think the learning curve is going to be too stressful. Writing my CV last week knowing I will have to go to a new team really stressed me out and has worsened my insomnia. Ive been talking to my union rep today about having a meeting with HR I think they will dismiss me on grounds of inefficiency due to health issues and then I will take my pension early.

Im resigned to that because although Ive enjoyed the work Ive been doing over the last year I think working especially if I have to change jobs takes too much out of me. The energy I spend for those 15 hours could go into doing some chores that dont get done, a yoga for ME class I never make it to because it is on a work day, and a couple of hours a week volunteering. I will be able to prioritise my health and wellbeing rather than prioritising work.

the main thing around working is you push yourself because you dont want to let other people or yourself down. You are also accountable to other people so if you pick up a virus (I had a stomach bug a couple of weeks ago) you end up needing to be off sick for a week but you have to phone up yet again and say you are ill - I just hate having to make those calls. Unless youre lucky to have a good manager that can be so stressful.

 

[Dechi]

@NelliePledge I am sorry about your having to retire. Hopefully it won't be too hard financially and your health will certainly get better from it.

As for me, I am working hard on trying to accept my disability, but I am not there yet. It's a constant battle with myself. I am a type A personality, as many pwME are, and not working is so very, very hard. The guilt, the constant thought of being a burden to society, the lack of goals and repressed ambition, my body transforming because I mostly sit all day, all of this is driving me towards depression. Also having to fight so hard to be recognized as disabled and keep my income has been taking a toll on me from the beginning. Where does this end ?

I am lucky to have a very competent and kind therapist helping me through this. And PR, of course. Sometimes I think I just can't keep doing this. What's the point ?

 

[Learner1]

@Dechi, so sorry you're feeling this way... it's hard, as others in our lives don't understand what we're going through and it feels like life is passing us by...

I was lucky to fight and beat cancer before going through this battle. Having major abdominal surgery on an emergency basis caused me to stop everything I'd been doing. Everything I did was to fight for survival. And then when I had more bandwidth I slowly added people and activity back into my life.

For me, this is similar, except there was no surgery. It took a while to realize how sick I was, but then I switched into survival mode, arranging my life to not exacerbate my fatigue and to do things to work towards wellness. I don't have the energy to care what others think, though I am careful to commit to only things I can deliver on at work, and have found it's counterproductive to be a hero...

If we only have so much energy, best to use it being positive. There's a way out of this...we just have to find it...

 

[Dechi]

@Learner1 Thank you. I am impatiently awaiting for the solution to this. It's what's keeping me alive.

 

[NelliePledge]

@NelliePledge I am sorry about your having to retire. Hopefully it won't be too hard financially and your health will certainly get better from it.

As for me, I am working hard on trying to accept my disability, but I am not there yet. It's a constant battle with myself. I am a type A personality, as many pwME are, and not working is so very, very hard. The guilt, the constant thought of being a burden to society, the lack of goals and repressed ambition, my body transforming because I mostly sit all day, all of this is driving me towards depression. Also having to fight so hard to be recognized as disabled and keep my income has been taking a toll on me from the beginning. Where does this end ?

I am lucky to have a very competent and kind therapist helping me through this. And PR, of course. Sometimes I think I just can't keep doing this. What's the point ?

thanks D luckily for me the finances isnt an issue except that right now I earn just a bit more than I will get from my pension so it does make me think what is the point. My mortgage on the house is paid off so no big expenses each month. Im looking at not working as a positive as much as possible as i know it will be much less stressful so healthier. Ive got a good counsellor too she has kept me going through 12 years of my mum having severe dementia and the depression I had as a result.

N

 

[CedarHome]

I just found this thread and have been wondering the same thing.

I've been off work for 4 months now - working very, very part time from home- and have already crashed a few times when I decided I was well and pushed too hard. Many weeks 0 hours, some weeks 2-4 hours. Crash week was when I tried working 12 hours. That was a month ago and I'm still dealing with the aftermath.

My employer has been super supportive. It feels really good to feel productive when I am able to work- and stressful when I can't do all that needs to be done.

I don't have an official diagnosis yet- just lots of exclusions and Huh, You're a Complex Case.... so I don't really have a doctor letter. That's frustrating too.

I keep telling myself that when I get to being upright & bored for 6 hours a day I'll know I can go back part time. No idea when that will be or if that will even happen, at this rate!

 

[Dechi]

@CedarHome Your decision making technique wouldn't work for me. :-( I am upright more than 6 hours and bored out of my mind. But unfortunately it seems I have lost any stress handling capacity and even when my symptoms are milder, simple little stressors of life will send my spiralling back into anxiety, no sleeping, symptoms augmenting, depression and so forth.

It seems I can't get out of it. This lack of ability to handle any emotional, physical and mental stressors is keeping me from realistically thinking I could work. If it wasn't for that, I think I could surf on my baseline, work on keeping it a certain level by pacing, and work, at least a few hours a week.

 

[Learner1]

I just found this thread and have been wondering the same thing.

I've been off work for 4 months now - working very, very part time from home- and have already crashed a few times when I decided I was well and pushed too hard. Many weeks 0 hours, some weeks 2-4 hours. Crash week was when I tried working 12 hours. That was a month ago and I'm still dealing with the aftermath.

My employer has been super supportive. It feels really good to feel productive when I am able to work- and stressful when I can't do all that needs to be done.

I don't have an official diagnosis yet- just lots of exclusions and Huh, You're a Complex Case.... so I don't really have a doctor letter. That's frustrating too.

I keep telling myself that when I get to being upright & bored for 6 hours a day I'll know I can go back part time. No idea when that will be or if that will even happen, at this rate!

So sorry you're going through this. It is very difficult when you can't predict the future. These journeys we're on seem to have their ups and downs.

Hope you get answers from your doctors soon. Check out any disability laws that apply to you so you have things properly documented to be able to justify your situation to qualify to help, keep your job, etc.

 

[TenuousGrip]

I haven't read the replies but ... is there any way to take a temp job (short-term, no obligation employment -- through a temporary employment agency -- for a day or two ... at your discretion ... that uses some or any of the skills that you have) as a test, just to see how your body reacts ?

 

[Learner1]

The advice I've seen is to try volunteering, as if you're trying to qualify for disability, working may complicate things.

And, it's being to show up every day for work over a period of time that's so difficult...

 

[TenuousGrip]

working may complicate things.

Fair point. Definitely something to check into.

 

[Dechi]

I haven't read the replies but ... is there any way to take a temp job (short-term, no obligation employment -- through a temporary employment agency -- for a day or two ... at your discretion ... that uses some or any of the skills that you have) as a test, just to see how your body reacts ?

This is something I have been doing. I am volunteering for ME associations from home and it served to prove that I wasn't capable of doing it steadily and certainly not for more than a few hours at a time. It also made me worse and it was only occasionnal work.

My heart wants to work so bad but my body and brain can't follow... :-(

 

[Dechi]

The advice I've seen is to try volunteering, as if you're trying to qualify for disability, working may complicate things.

And, it's being to show up every day for work over a period of time that's so difficult...

Yes indeed, it may very well complicate things to work. Volunteering to test your abilities is a lot easier in my opinion.

 

[CedarHome]

@CedarHome But unfortunately it seems I have lost any stress handling capacity and even when my symptoms are milder, simple little stressors of life will send my spiralling back into anxiety, no sleeping, symptoms augmenting, depression and so forth.

Good point!

In hindsight, I can see that over the past couple years, simple things that never would have bothered me "before" were becoming unusually stressful. That was a warning sign that I didn't know how to interpret.

 

[daisybell]

I work very part-time - a couple of hours a week at home, and a couple of hours out. I'm able to potter around at home doing chores, and I don't usually need to lie down in the day. But still, I can't work more than that without triggering a deterioration.
For me, it's as much about the cognitive fatigue as the physical... my concentration and memory just go. Plus I really can't manage conversations in noise or when several people are talking.

I'd love to be able to earn a decent amount of money but I can't. I don't qualify for any benefits either.......

 

[Dechi]

@daisybell I am sorry about that. I hope you still manage to get eveything you need. Financial stains are so very hard on us.

Since writing that post, I have put myself in situations resembling work and I don't do well at all, even for very short amount of times. I was in a work like situation yesterday, very similar as having gone to work for 3 hours with a 15 minute break plus 1 hour of travel time. I came home I was so beat I had to go to bed even though it was not only 5 pm and I hadn't eaten lunch (had a late breakfast before going). I couldn't sleep because my legs and arms got numb from the pressure of resting on top of each other and it gave me pain. I was very cold, even though it was 26C in my room and I was all dressed and had blankets on top of me. I lay in my bed for an hour, then had to get up.

I had trouble sleeping and woke up a bit before 8 this morning, I had flu like symptoms today and felt feverish even though I had no fever. I had to sleep 2 hours from 12-2 pm and when I went outside in the sun for a few minutes, it made me even more feverish.

So that was a good test. I can't imagine what I would be like if I was to work full-time, or even part-time. :-(