This morning I woke up, lay in bed for a little while on my heat pad in an attempt to warm up, then got out of bed and went to make breakfast. I ate my porridge in front of my computer as I often do, and took to Twitter complaining that as it was raining I had lots of pain (also as I often do!) I ate my breakfast and took my medication, which included Naproxen and Tramadol. I complained on Twitter a little more and empathised with others also experiencing a chronic pain flare up in this rainy weather.
My best awake time is in the morning. So I began doing some work as I knew after lunch my brain would turn to mush and I’d probably have to go to bed for a while. My husband went to empty the postbox and lo and behold I had a brown envelope.
My PIP reconsideration hasn’t been successful, I’m going to have to go to appeal.
I don’t even have the energy to feel massively angry about it. I’m just tired of it. More paper, more assessments, more trying to prove that I am actually ill and I don’t sit around for most of the day doing very little because it’s fun (it’s not fun). What can we do other than go “righto then” and get on with it. Anything else requires too much energy and I don’t have much of that right now.
So. Righto then. On we go.
On September 21st 2015 I had a letter telling me my Personal Independence Payments had been stopped after my re-assessment. On 12th October, I put in a written request for mandatory reconsideration of my claim.
I called the DWP last week, a month after I’d sent the letter. They found it on their system, and the person I spoke to on the phone told me they’d basically forgotten about it. It had been scanned and entered, and then left.
Today I called again. The decision still hasn’t been made. This time I was told it could take up to nine weeks for a decision. Which is halfway through December. Just shy of three months after my PIP was stopped.
In this time, surprisingly, I have not magically become better. I have not adapted to life without PIP because, funnily enough, I kinda need it. My extra financial requirements have not disappeared. But now I don’t have the cash to meet them.
My PIP paid for my weekly gentle yoga classes that helped me move and got me out of the house. It paid for a bus, it paid for me to park the car. It paid for me to use the local Shopmobility services when I went out. As a result of me losing my PIP our ESA payments also went down. This means I now cannot afford the yoga class, or transport, or much of anything really for the moment. Losing my PIP – albeit only temporarily, I hope – has meant I’ve lost a lot of my independence. I cannot afford to get out the house. I cannot afford to go to places and meet people. This is how people become isolated – it takes sick and disabled people more energy than most to get out the house in the first place. If they’re constantly worrying about if they can afford to, that’s not going to help.
I’ll be alright – I know how to fight this and if it goes further and I have to appeal, well, I can do that. But it’s not fun, and it’s not easy, and I’m ill and I’m tired. How am I going to make myself “work ready” if I have to spend all my very limited energy fighting for the basic stuff I need to be able to live my life? Removing essential money from sick and disabled people doesn’t make them more likely to succeed, it won’t make them more motivated to go out and work. In fact, it is doing just the opposite. We’re all very tired of fighting.
Last time I wrote about having my Personal Independence Payment assessment I said it felt like an exam I had to pass. As it turns out, this time I seem to have failed.
Yep, after doing my renewal application for my PIP, I was declined. I was half expecting this anyway but it still came as a shock. So now comes the mandatory reconsideration period and the appeals process. I’ve also requested a copy of my assessment to see if it’s as comedic as the last one was.
As an ill person, the expectations the DWP have of me are a bit confusing. I’m told that in order to be a productive member of society I have to work, that working is the best option for everyone and that their aim is to get everyone working. Yet, as soon as I try and be productive and proactive, I’m told I’m not ill enough to be receiving any help. Which means you cannot win. You cannot be productive while also being ill as the DWP don’t have a box for that. You can’t be a professional, an educated person because if you’re able to be educated and have a profession then you’re clearly not ill. The truth, as it always is, is far, far more complicated than that.
Me doing an MA does not means I don’t still have chronic pain. The fact I can write a blog entry doesn’t mean I won’t have to go to sleep for the afternoon due to chronic fatigue. Reading a book doesn’t mean I don’t need my pain medication. You’re told to be productive yet that means you’re not ill. If you’re ill you’re told you have to be productive.
**DISCLAIMER: All the opinions and experiences in this post relate to me. Everyone’s experiences of disability and illness are different and no two people will have the same views, opinions and feeling about the topic.**
Next month, I won’t have worked for two years. It really doesn’t seem that long but it also really does seem that long. I wouldn’t be lying if I said that I don’t know what happened to 2014 and 2015 – a year spent working out what my illness does and how I could live with it, and another year trying to get myself back to as “normal” as I could be while still making accommodations for my condition. Time moves fast when you’re doing very little, it seems.
I’ve had two ATOS assessments in that time, both for PIP. The first one was kind of a blur – I’d been ill for a few months, I didn’t really know what was going on, what medications I should be on, how I was going to pace myself, all the things that you eventually pick up and learn the longer you live with being ill. My second assessment was last week and it was a different experience. Not because it was conducted at home rather than at their offices, or because the questions were different (they weren’t) but because I’ve lived in this body with this condition for nearly two years and I know it a lot better now.
I’ve gone through different stages of dealing with being ill. For a while I was just “ill”. One day I could do something, then over the course of a weekend I just got ill. I can remember the weekend clearly as the Monday was the final time I went into work. Then you start looking for reasons and ways to help. Diagnoses, medications, pacing, reducing the amount you achieve in a day. Resting a lot. Sleeping a lot. Getting into the groove of “being ill”.
And then once you’ve got the rhythm of your illness – you’ve worked out that your big flares usually come a week after the event that triggers them, that if you spend the morning in town you’d better not plan any activities for the afternoon, that if you’re going to need to be clean and showered for some reason you’d best plan that into your previous day (also your definition of “clean” gets reeealllly loose…) – you start to live with it rather than fight against it. This doesn’t mean everything is roses and happiness, far from it. You get days of pain and days of exhaustion, you can’t drive as far as you used to or walk as far or be able to use your brain and think after 3pm. But you have what I called my “new normal” – and you forget that this isn’t other people’s normal.
I’ve found myself stuck in a really bizarre place. I’ve just finished a postgraduate degree and I’ve worked for ten years in a profession (granted the profession has been ripped to pieces by the Tories but I digress…) and so my desire is to work, because I love my profession and I want to be able to practice it. But then, you’re put in a position with your ATOS assessor where you have to describe in minute detail how you can’t always cook your own meals, how sometimes you don’t have the energy to wash your own hair, how someone else has to come in and do your vacuuming for you. I’ve found it very difficult to take both the realities of being a professional, and of someone who is ill and needs assistance and help with everyday tasks, and apply them to the same person – me. How can I be both those people at once?
And I know where this confusion comes from. Having an ATOS assessment makes you constantly second-guess yourself. Can I walk further than I said I could? If I can open a can now does that mean I can actually cook? Am I better than I was, am I more able than I think I am, am I being lazy? The constant second-guessing and the need to prove that you’re ill or disabled makes you stand face to face with the worst bits of your illnesses. I can’t leave the house for days, I can’t wash my hair more than once a week, I can’t cook my own dinners. It’s almost impossible, to me at least, to take that view of myself and pair it with “I’m a professional with a postgraduate degree and the desire to work”. The DWP make disabled and ill people justify the worst of themselves and then they expect them to “pull up their bootstraps” and make the best of the situation. After you’ve been repeatedly shot down by churning out all the reasons your mind and body is unable to work properly, under the fear that you won’t be believed, it’s a difficult task to turn that around and be motivated and positive.
But hey, maybe that was their plan all the time. Motivated and positive ill and disabled people get ideas and opinions and the means to express them, and we can’t be doing with that.
It’s strange, because obviously I have a lot of things to say about this. I have to go for another assessment after having been on PIP for just a year which really wasn’t expected, but they were a hell of a lot faster this time than last I’ll give them that. I’m going into this one having already had one assessment and so I know a bit more about how the process works, but I feel like I can’t talk about much of that at the moment. Because the internet has ears. And the paranoia of ill and disabled people is high. And I’m worried that my concerns about my assessment will be taken the wrong way. So instead, I thought I’d talk about something else.
I got ill almost two years ago now. It seems like yesterday and a lifetime ago at the same time. When I look back at how I was before I got ill, the work I did, the activities I did, how busy I was, it definitely seems like another life. And the problem with that is, the way I am now has become normalised in my mind. And so I forget that I still do things differently in order to accommodate my condition because I’m now not aware that I do them.
I don’t go into town because I know it’ll make me tired and I have things to do at home. I have to plan my showers days in advance sometimes, to make sure I’m actually, y’know, clean but to make sure I have time to rest afterwards. I get tired in the afternoons. I get pain and fatigue when it rains. I take strong painkillers, I don’t clean my own house, and just today I vetoed a trip to the supermarket at the end of the road because I felt in too much pain (even though I would’ve driven there rather than walked).
But that’s now my “normal”. I do all these things without thinking about it because it’s habit. Which worries me that I might miss them when I’m talking to the ATOS person.
Last time I said it felt like an exam. So I guess it’s time to start revision.
I spent more than half of 2014 blogging about the ongoing saga of my PIP application. I first applied in January and through a complicated form, a poorly-recorded assessment and nearly nine months of waiting I finally ended up getting a disibility benefit.
Twelve months later and it’s time to go through it all over again.
Yes I have the photocopies of the last form. Yes I still have the Word file with all my written answers in, and copies of my letters. Yes I know they hopefully won’t ask me in for another assessment.
But still. Another few months of wondering how long it’ll take and if I’ll actually be re-awarded.
I’m still exhausted from the last time.
The last time I saw a specialist regarding my chronic illness was back in February. I saw a rheumatologist who diagnosed me with fibromyalgia. Which she then told me was the same condition as Chronic Fatigue Syndrome. (hint: it’s not.)
Last July I finally received a referral to the local pain clinic. I was very pleased as finally I felt like I could begin looking at managing my condition, and finding strategies to get life as back on track as I could. I waited four months for this appointment and went in with questions about diagnoses, about medication, about referrals to other agencies who could help me.
I spent more time sitting on the number 501 bus to the hospital than I did in the pain clinic.
I was told calling my condition fibromyalgia “isn’t helpful” and I should call it “widespread pain” instead.
I was also told I was ineligible for a referral to the M.E. clinic as they don’t take people with chronic pain.
Let’s deal with the first point first. Fibromyalgia is classed by the World Health Organisation as being a “soft tissue disorder”. I’m aware that there is extensive debate happening about the accuracy of this but the fact remains it is recognised as a condition. Changing the name of the condition de-legitimises the patient. It says, “if we give you a medical name you’ll think you actually have a problem. So we’ll give you a symptomatic name instead.”
For the second point I’m just going to put this link to the M.E. Association here and quote the first paragraph under “The typical symptoms of M.E./CFS” that states:
Muscle symptoms include exercise intolerance and post-exertional malaise (i.e. feeling shattered the day after undue physical activity), pain/myalgia (present in around 75% of people) and fasciculations (visible twitching of the muscles which sometimes includes blepharospasm/eyelid twitching).
It’s at this point that I have to go and take a bit of a long lie down because the cognitive dissonance between professionals and departments astounds me. In February I saw a rheumatologist that told me I had fibro-which-is-also-CFS and last week I saw a pain clinic doctor who told me I had
fibromyalgia “widespread pain” and I didn’t meet the criteria for referral to the M.E. clinic because I had a symptom that is present IN 75% OF M.E. PATIENTS.
I’m fully aware that those of you reading this who also have chronic conditions are probably going, “Bless her, she’s very new to all this, she’ll learn soon enough that you can’t get much out of doctors when it comes to chronic conditions”. I know. It’s sad, and I know.
But. I wanted this appointment to be the start of progress and in some respects it has been. I’ve been referred to the 12-week pain management course and I am going in with an open mind. Because at this point, what else can I really do?