Choices, priorities and descriptors

I have both ME/CFS and MS - the former very long-standing (30+ years), the other fairly recent (MRIs prove it was not there in 1997, and was there in 2005). So I have massive fatigue issues. Can I write a piece about the fatigue - how it stops me doing things and how, if I do them anyway, my system reacts badly leading to further illness and more restricted functioning?

This is all true, but it does not tie in very well with the descriptors as they stand - sometimes I wonder if they were re-drawn in order to reduce the number of claimants with ME. Can I reach above my head a couple of times a day, most days - yes. Could I reach above my head 3 or 4 times an hour 5 days a week? Absolutely not. Do I know exactly where the boundary lies - or even where the likely max-min ranges are? No, because I don't waste my precious energy doing that sort of thing. How do you convey that?

Is there any point in explaining the language of priorities? I don't even try to make a cup of tea - might I be able to do so, if it was really necessary and if we had everything set up for it? Yes, I might - but that might take away the energy needed to brush my own teeth or get to the toilet on my own in the middle of the night. Those are more important - there would be similar trade-offs in the workplace.

And I can't say (and nor can my doctors) whether it's the ME or the MS or - most probably - a combination of the two which gives the wrung-out dishcloth feeling after only a small amount of effort at anything.

Back again with another similar query. I'm looking at the section on "describe your illnesses or disabilities. The question is a psychological one - the DM's psychology, not mine!

Back to the ME and MS bit (always supposing I can get someone who reads far enough to see that you can have both medically proven - I have!)

The MS is much more recent - it's established that I did not have it in the 1990s, but did have it in 2006. I now have a diagnosis of SP MS and lots of things that follow from there.

So here's the dilemma:

The MS looks like the stronger "card". If I put it first on my list of "conditions", I start off with a clinically well-defined and uncontroversial disease. The DM (or whoever) can look it up and see that the descriptors I'm listing - starting with mobility claims at the 15-point level and other physical problems - match what they see in the handbook under "MS". BUT if they see the word "mild", which is in my consultant's notes, they may easily decide that my mobility isn't that bad and that, like many people with MS, I could manage some mobilising and some work-related activity.

If I put the ME first, I'm putting the older diagnosis and what is probably the worst impact on my health. I was getting SDA and indefinite DLA HRM HRC before there was ever an MS diagnosis. BUT I risk finding that my form is read by someone who sees ME/CFS and promptly decides that all the rest is hysteria or irrelevant and has decided before they get to the MS that the whole claim is certainly not SG material. Worse, I am receiving no active therapy for the ME and taking various medicines to deal with the symptoms - especially the pain and intermittent muscular spasms. The rest is mostly a matter of time and energy management. I have no consultant to list. And the re-vamp of various conditions in 2010 looks partly aimed at excluding CFS/ME claimants.

Exactly what my GP will say, I don't know. She said she would try to get a letter out for me by the deadline, but I'm going to have to write the form up (type on pdf version) without any certainty that I will even see it before my submission goes in.

So - what do I list first in the box marked, "tell us what your illness, disability or condition is."?