PIP Reassessment - CFS/ME

As it seems a few people on these forums have experienced, in September last year I received a letter stating that I'd be granted an extension on my reassessment until half way through 2021... and then promptly received the reassessment form PIP 1043 to fill in.

This isn't the first time I've been through this process, and on the 6th of this month (after a recorded telephone assessment) I received the DWP's response. In short I was bumped down from enhanced Living and Mobility to standard, despite the fact that my situation hasn't changed... if anything my mental state (which is a large component) has deteriorated over lockdown, which has also affected me physically.

Anyone who is aware of CFS/ME, or other conditions like it such as Fibro Myalgia, know what a tricky and utterly frustratingly variable condition it is... and no way towards the positive. I can't undertake the majority of daily chores because I simply don't have the energy or comfort to be able to do so. I'm currently looked after by a family member and the thought of how I'll cope when the inevitable day comes that I'm without them, without even regarding the emotional trauma, is haunting.

To add to my point above, anyone who has experience with CFS also knows that it has a reputation as a "hidden" condition. - herein rests my mistake.

I once came across a wonderful document about "spoon theory". It was written in regards to lupus, but essentially equated every activity one might undertake in a day to being the equivalent of a spoon. There are only so many spoons in the drawer, and once they're expended you either have to rest and replenish or borrow against tomorrow's spoons with hefty interest.

This applies well to CFS/ME. However where the writer of "spoon theory" seemed to suggest a small but replenishing supply of spoons, my biggest bugbear as a CFS sufferer is that I can't tell how many spoons are in the drawer... and very often without realising I'm borrowing against the next day/week/occasionally months with no certainty that sleeping or resting will replenish any spoons at all. Thus I fall into awful health spirals where I'm pretty much entirely impeded, and very uncomfortable.

This applies to my reassessment. I made the mistake of knowingly borrowing against my spoons to pay extra care and attention to the phone conversation...

Due to the complexity of the condition, what should have been a 45 minute assessment turned into 2 hours. By the end I was nearly falling out of my chair, and my family member had to step in to answer on my behalf once or twice. However I was attempting to be clear and give enough information that my problems could be understood.

Unfortunately the assessor took this to mean I can communicate without problems, which is far from the truth when my health is low, especially when coupled with the anxiety. I regret that he wasn't party to a thoroughly miserable two weeks following the phone call. He also claims that a large part of points being deducted is due to the fact that I can achieve living tasks without much aid, I just need to pace myself. - I cannot expression how infuriating this statement is.

I'm at a loss. How on earth do I convey that, "Yes... I could do any one of those tasks. But if you expect me to do another task, or repeat it, then I won't be doing any tasks at all for the foreseeable future." - this is somewhat snarky. A more complex task such as cooking is simply undoable when I need to take care of other things such as toilet and hygiene needs, but this is the essence of my point.

I've attempted to give detail in writing, I've even redefined what an "average" "good" and "bad" day means for me, and that a good day is exceptionally rare... and how quickly and unexpectedly my health can dip for prolonged periods. I just don't know how to express in words what I need to say without the DWP being able to "misinterpret" my meaning. Does anyone have a clue how to express the maddening variability of my condition in a way that doesn't end in "pace yourself"?

I've been attempting to figure out how I can pace myself for 22 years, and so far no luck what so ever.

It's been a week now since I received their response. I've felt the anger coming, I've just been too exhausted to give voice to it until today. I want to challenge the decision, with help from the medical professionals in my life but I just need the extra advice if it's available... and after typing all this, the ability to hold on and do so before the crash hits.


And as a secondary point: in my original assessment I was given 4 points on the topic of planning and following a journey. I'm disoriented easily, and public transport becomes a truly petrifying prospect thanks to my anxiety.

However the assessor claims that because I have a family member to ferry me around, planning and following a journey becomes an irrelevant point. My counter is that without the family member, I wouldn't be making the journey full stop. Is this right?

Thank you for you help.

Hi BIS,

A button doesn't really do it justice. Sometimes a thoughtful reply and some sound advice are what you really need to get over the hump and make some progress. Thank you very much. I can but do my best, however now I feel capable of doing just that.

Glad to hear this Jim. We all have your back here! Wishing you the necessary energy, from Mum of a spoonie daughter.
Denby

If someone would be kind enough to help me briefly... I note that I'm able to ring up the DWP within a month of the award letter to ask for details. It strikes me that the assessor has been quite thorough in his reasonings, especially since I can compare the materials from my old assessment to this current one.

Does it benefit me at all to ring up and ask? Or is my energy (and anxiety...) better served by simply responding? Thank you.