The panic is back, along with the hope

So the results of the PIP assessment thankfully arrived much sooner than the actual assessment did but unfortunately they will not be giving me any benefits. This then has some negatives and some positives and as always, some frustrations.


The most frustrating thing is that when I applied, and therefore needed it most, my form was backlogged somewhere, and now that things have improved a little, suddenly I get an assessment! The positive in this is of course that I have improved and while the whole system is in my view a bit ridiculous, it does demonstrate that I have come very far in my recovery to the point where I am not sick enough for PIP.


The problem with conditions like CFS/ME is that where you have to work yourself hard to do things you have to prioritise very severely. I can just about (but with discomfort) manage most everyday necessary tasks for life, like eating and washing. But to have the energy to do all that and then enjoy other things like socialising and hobbies is something many CFS/ME sufferers lack. My hope was that the PIP money and the disabled status that comes with it would enable me to live a little more because I would not have to worry about the parts of life that most people take for granted. I would get a free bus pass for example which would mean that I could get a bus for short distances without worrying about the accumulating bus fares.


The Bible promises us that we can have life and have it to the full, which right now feels a little out of reach. I have to have faith that God really can live up to this promise.


I am also currently freaking out a bit about going back to university. The fear and anxiety is much, much less than last year but it's still there, making all my symptoms worse. This is very inconvenient as I have loads to do before I head back. The end is in sight though. I had been thinking about quitting or going to a different university to go part time but I feel that this is something I need to do. I would liked to have taken a year out previously to recover and sort out appropriate accommodation but I was unable to do this alone and my parents refused to help me achieve this.
I am getting back my big dreams and I know that God has plans for me that he's excited about. I also know that I would not have gotten through this without God and the promises he has given to me, and everyone who believes in him.

My life is more than tick-boxes

So ATOS assessment day is tomorrow. Currently I'm in bed listening to the How To Train Your Dragon 2 soundtrack (which somehow has a calming effect, and is pretty brilliant) as even thinking about it is making me want to give up and live in a hole. According to the many people who have been through the process and a number of ex-assessors the assessment aims to catch you out with the mentality of guilty until proven innocent. This is making me nervous, partly because I have an invisible illness that fluctuates and can't be seen, and partly because it's making me think of all the things I can't do in my life so that I can give the best (or rather worst) picture to the assessor. My mother woke me this morning with a lovely long list of reasons why my life is rubbish compared to most 20-year-olds. My positive-thinking ambitions are struggling to substantiate themselves right now. Cake has helped though.


I'm not normally one for going on about people doing extraordinary things despite illness or disability because it makes the others look weak and leaves room for ignorance and judgement, but this situation goes the entire opposite direction by actively searching for the limits of the disabled and chronically ill. I can see the difficulties of such a task in that there are always going to be people who lie or exaggerate but the other side of the coin is the systematic putting down of thousands of people who have way too much to be put down about already.






I wrote this the day before my assessment but didn't post it because it broke my rules about when best not to post. I am glad to say now that while the whole thing was stressful it was a much better experience than I expected.
The assessor told me she had some knowledge of CFS/ME which was reassuring from the outset and was kind enough to empathise with me once the assessment was officially over saying 'it is so hard' and also slightly surprised me by saying how draining it was for her to be a part of the process. While the form is a one-size-fits-all that in reality fits nobody there was some humanity in the assessor which really helped.




For anyone due to have an ATOS assessment for PIP soon here is a summary of what happened in my case:

• ATOS had rented a room in an office building and so shared the building with lots of other companies.
• I didn't have to climb any stairs but the distance to the assessment room itself was a hike.
• The assessor got us settled and then announced that she was ready to start the assessment and waited for me to say I was too before starting. Whether she took anything I said or did beforehand into account I don't know.
• I was prompted at the start to say as much as possible saying 'the more I know the better picture I can put on my form'.
• She asked objective questions from the form (e.g. how far can you walk? can you make a journey independently?) but also prompted me so that I was specific and only talked about my bad days.
• The questions were fair although difficult in some cases because some of them referred to my cognitive ability, which is dependent on my fatigue at the time and is worsened by moving around, whereas the ability to move around was only one specific question referring to walking.
• She asked at the end if I had anything I wanted to add. I suppose here you could include things you feel are necessary that they don't cover in the form (e.g. laundry)
• The end of the assessment was clearly stated and while again she may have observed my behaviour after, she did move away from the computer and talked in a more chatty and informal manner.
• It did feel a little pointless in that the questions were very similar to the form I'd filled in and so really there was little to add but maybe ATOS like an objective assessor.

The big day is almost here

After almost a year, I have finally received a letter from ATOS giving me an assessment date. ATOS is the company the government decided was capable of assessing who needed financial support to help them live normal lives with a disability. There are two disability benefits PIP (Personal Independence Payment) and ESA (Employment and Support Allowance). PIP (not to be mistaken for PPI) is a benefit for anyone with a disability to help with the cost of carers and getting around. It replaced DLA just over a year ago. ESA is for anyone with a disability who is unable to work due to their disability.


Sounds straightforward enough. But how do you assess whether someone is eligible for such benefits? As a student, I can't get ESA anyway as Student Finance covers enough and I'm not out in the big wide world just yet, but just what criteria would you use to define a person as unable to get a job? And if they were capable of maybe getting some certain types of jobs, would there be enough available for them to be hired anyway? Similar questions apply to PIP and I have talked (or moaned rather) about this already on this blog).


It seems ATOS' criteria basically includes any person who is living. Maybe a slight exaggeration but it does seem to be the only consistent criterion. I have heard from many people with severe CFS/ME who are bedbound and are in agony at the sensation of any light, sound or touch, who have had to have their assessment from their bed classed as capable of getting a job. Thankfully ATOS is ending their contract early and very soon will no longer be conducting assessments. In the meantime I have an assessment with them. As someone who can live and breathe I probably won't get any benefits so that's at least 2-3 hours of my day in which I could be resting or doing something productive  instead humouring a person with a series of tick-boxes. If you hadn't noticed, I'm very much a cynic. The world is starting to prove me wrong on these things, but it's taking its time.




Alongside this, I have been decluttering in what I call Operation Room Renovation. This has been taking a while as I have limited energy, concentration and ability to stop being sentimentally attached to every item. The Bible talks about living as simply as possible as humans tend to fill their minds with belongings as opposed to God, and even the ancient Romans believed in living simply (well some of them anyway, such as Horace). My concentration is so bad that hopefully removing some of the items that take it up may leave some room for the things that matter. Currently my absent-mindedness is showing itself in the number of glasses of water I have filled, left somewhere and then forgotten about. There is usually at least 3 in the house somewhere at one time...

The countdown begins...

I just wanted to first say how overwhelmed I was by how many people have read my last post, I was moved to tears! With a week left to go before term starts again at university, the familiar nervousness and worries creep in - what if people think I'm being rude in not joining in things? what if people think I am faking it? what if my symptoms get worse? what if I end up very isolated because I can't go out and talk to people?

And so, of course, I prayed about these things, and although I still worry about them, God has used the response I had to my last post to show me just how much He loves me, and just how much support I have. So thank you to everyone who has been reading, you are an answer to prayer!


I have spent the last 4 months trying to improve my health by following the only thing that has been consistently shown to improve symptoms in people with CFS/ME - doing nothing! I never thought that I would end up with a condition that made it impossible to exercise. Actually when I say nothing, it's a controlled sort of nothing, as in I can do a limited amount, but only because if I literally did nothing except what is necessary for survival, life would become pretty dull.

So my summer has been basically filled with days' worth of television (thank you Netflix), mounds of ironing (somehow the easiest chore, and one that never gets done at home) and endless form-filling and research. If I look at the summer as a whole, I would probably say that it has been successful in improving my health. Maybe not quite (OK, not nearly) as much as I would have liked, but the fact that I am sitting upright typing this as well as having had a very short trip into town this morning by car is a major breakthrough.

I feel very proud with my achievements but 4 months is a long time and I struggle to remember exactly what I was like at the start. One thing I do remember is that I was feeling very low and definitely ready to throw in the metaphorical towel concerning my degree. However, 4 months of recovery and numerous, extremely welcome and kind messages and discussions have helped me to now make a list of the good things in life as it is:

- Disabled Students Allowance has promised to be very generous and so I am expecting to (at the very least) be given a mentor, a very comfortable office chair and computer equipment. Yes, given!

- After years of trying to get to a weight that I like, the lack of activity I am now forced to has allowed me to be able to put on the necessary pounds, and I feel fabulous!

- Somehow my hair stays grease-free for days at a time so a highly energy-consuming activity like hair washing doesn't have to be done every day.

- I have convinced myself that I do *need* a smartphone as I can't be always walking to top up my credit on payg, and I have not looked back.

- Trips out become special as they are a rare treat.

- My bed and me are firm friends.

- Any shopping trip expenditure can be justified as either 'I *need* this now' or 'I haven't been shopping in AGES so I can spend the money I saved by not shopping before' so they become guilt-free.

- God is very good, and He promises that any suffering will be greatly recompensed, in fact the scales will tip towards the good rather than the bad.

So here goes!



And in terms of the official support the list goes:
- Disabled Students Allowance (DSA) have said yes to funding me and I just have to turn up to a meeting with someone who is willing to splash some cash!
- Personal Independence Payment (PIP; totally wrongly named by the way) have taken my form that I spent so much time on and have not been heard of since.
- Social Services have said we'll see what we can do but the man on the phone was very nice :)

My Life is More Than Tick-Boxes

Being sick/disabled produces so much paperwork! The acronyms go on and on: DSA, PIP, ESA... How else am I meant to get enough money to live off? Filling out all these forms and attending all these appointments turns into a full-time job.

My latest form has been the PIP. PIP stands for Personal Independence Payment and has taken over the DLA (Disabled Living Allowance) in the government's attempt to save money. They have aimed to save this money by allegedly only giving money to those who really need it. But it depends on your definition of 'need'.

Unfortunately, the government's idea of 'need' is very literal, which may sound fine to you as 'why should we pay to help people do things that they want to do? There are things I want to do but can't.'

As someone with CFS/ME I cannot walk for more than 15 minutes a day, extremely slowly. And that is with my parents being my carers and doing most things for me while at home. No one wants to walk that slowly so I walk alone. I can't walk to the shops and back so I have to make do with what I can buy cheaply online and without being able to choose. I can't walk from and to a normal parking space when going out somewhere.

So yes, I can eat and wash myself, but I can't do most things that make life at all interesting. I become some invalid waiting for people to come visit me. And they don't. I'm 19, and it's hard enough having to forgo things that I should be doing and that I want to do as a 19-year-old without being told that I really can't do them ever because either a) I'm not really disabled enough or b) we don't have enough money.

I hate being told that I'm not sick enough for things. Am I in some inbetween bracket? I'm not actually, I have most of the same symptoms as diseases such as lupus and MS and yet I am treated with much less respect. It is literally all in a name.

And so how do you convey these everyday challenges into answering questions with 3 tick boxes labelled 'YES', 'NO' and the ever vague 'SOMETIMES'?