Before I started on MIND reception, on my application form I explained my situation and made my limits really clear, whilst also pointing out that my health is improving and it is likely that I will be able to take on more work in the future. 

 

I've played it safe and for now, have only offered to do an amount of work that I'm 99% sure I can definitely do, so as to be fair on everyone. 

 

I explained the situation further when I had an interview, pointing out that I'm well enough now so that I won't be ringing in sick with my ME at the last minute - to reassure them that I will be reliable.

Hello, this is kind of similar to some other messages that have been posted but I really wanted to see if anyone could give me any advice.  I am about 80% well and bored out of my brain!  I also live on my own and lately I've been spending time moping around, which is not a good idea.  I really need some more things to do to get me out of the house and ward off depression. 

 

I'm doing a vocational course from home in my own time but finding it quite difficult so I'm starting to anticipate it lasting longer than I'd hoped, when I thought I could move things along, and start working from home, sooner so that is getting me down.  Last academic term, things were a bit easier because I did a couple of short computer courses at my local university, but these have now finished and, though I looked through adult education brochures and so on, I just couldn't find any courses this term that I was interested in. 

 

So all I really do regularly is yoga, t’ai chi and my ‘direct payments’ helper takes me swimming once a week.  I don't have much of a social life due to problems meeting people, although I did put a message on that website I told you about before, ‘Gum Tree’, in my local area section and had a few people contact me, so I’ve arranged for as all to meet up for the first time at the weekend (scary!).  I hope something might come of that.

 

I feel on the brink of being ready for part-time work but am not quite there yet, because I would need to take a 15 minute break every hour or even 45 minutes depending on the work and - I could be wrong but I don't imagine any employer would be willing to accommodate that.  I have just been to my local volunteering centre and they have passed my details on to a few organisations who need receptionists to do short shifts.  I think I may be able to manage this kind of work but can't say I'm thrilled at the idea, it just seems to be better than nothing! 

 

So I'm wondering if anyone else has been in this situation and what they did - was there a particular type of voluntary work you did or organisation you joined that you ended up really enjoying, did you set up your own project or group or was there any other way you managed to cope with not quite being well enough to work?  I was looking at the website morsbags.com, about setting up a group to make cotton shopping bags to give to people to encourage them not to use plastic ones, and I thought that seemed like quite a fun idea.

 

Any other suggestions most welcome!

 

(to reply please e-mail network@wellies.me.uk and your message will be forwarded, or you can also do so on the website by adding a comment)

Dear Wellies
Thought you might be interested to see below the text of a draft handout done by a person with ME, intended for people he works with.
Anne-Marie x

=======================

M.E. AND ME

I have an illness called M.E. (chronic fatigue syndrome)

I'm giving you some information about it because we're doing some stuff together and it affects the way I act.

The illness means that if I overdo it:

- I get cognitive problems- problems speaking, hearing, understanding and thinking.

- I get physically exhausted (a feeling more like being poisoned than being tired).

- These symptoms can be brought on by physical and mental activity and, confusingly, mental activity can cause physical exhaustion and vice versa.

To avoid these symptoms I do things for short periods of time and then rest for 20 minutes. Here are the times I can do at the moment before resting:

- one to one meetings - 45 minutes

- learning in a class 1 hour

- walking or standing up 30-45 minutes

- general chatting - 2hours

- office work 45 minutes.

In the short term I can exceed these limits but then I need to rest for a much longer time.

It helps me if you are able do any of these things:

- help me keep within these time limits

- not speak to me when I'm resting (you don't need to be quiet)

- put information in writing rather than tell me

- If we do have a meeting, write down the key points I need to remember about what you have said.

- Tell me if I appear to be making no sense or appear not to be paying attention.

However this is not a dramatic illness and I am in control of it. You will not have to deal with me collapsing on the floor or exhibiting bizarre behaviour!

Hi,
Like many of you, during my 16 years of fighting M.E, I'd been using the computer to keep me connected to the outside world. I am fortunate to say that I have now reached the state where using the computer has become a daily occurrence, a neccessity for the work I now do - soon to be author ( watch this space!), part time administrator & songwriter.

However, each time I use the computer for an extended period of time ( 5 + hours), I suffer extreme fatigue, feel as though my brain is 'frazzled' and in seeps the 'fog'.
 
Question:
* Does anyone else experience the same problem?
* Has anyone found ways to prevent, combat and/or alleviate the effects?
( I use both desktop & laptop)