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 dust is beginning to settle, and everyone’s looking around slightly shell-shocked and wondering where to go and what to do next.
First, take a breath. Also I recommend a cup of coffee. This is a marathon, not a sprint. We have five years to try and get things changed, we can’t all exhaust ourselves in the first two months.
Second, take a look at the #wecantmarch hashtag on Twitter. Sick and disabled people (as well as anyone who, for whatever reason, is unable to physically march) are creating an online space of protest to match the physical movement of people. Feet on the streets is brilliant and a very effective way of showing the strength of anger but not everyone can do it. So what can we do? Here are some ideas.
- Read. Educate yourself. Learn about poverty, inequality, austerity and injustice. Learn why this is bad, so you can give educated and informed answers to people, as well as yourself. There are so many books out now around these subjects – you may not agree with all of them, but knowing why you disagree with something is just as important. Visit your local library, if you live in Bristol I heartily recommend Books for Amnesty on Gloucester Road as they have an extensive amount of books on these issues for a few quid each. If reading is a problem, have a look through Audible and see what audiobooks you can find. You can also get audiobooks from your library, either in physical form or electronic. Read.
- Find your interest. We cannot all be experts on everything. The state of the country is complex and brings into play a lot of different issues. While you can be reasonably informed about most of them, you cannot know everything about all of them. Find the issues that you feel most strongly about, or maybe one that you already know about as you’ve worked in the field or studied it before. For me, it’s youth work. I’ve worked as a youth worker for ten years and I’m doing my MA in it – I like to think I know what I’m talking about. Know what your speciality is, and don’t be afraid to link people to other websites of people who have specialities different from your own.
- Pick your battles. The internet is a busy place. People argue everywhere. You do not have to argue with all of them. We have a limited amount of energy. There will be people who will not listen to your point of view, and to spend time trying to convince them is a waste of your energy. It’s ok to say “I am not getting into this right now, bye.” Also, as a rule, Facebook and Twitter are terrible places for arguments on the internet (with exceptions, of course).
- Write. This one usually happens on its own after you’ve been doing the above for a while. Writing is a good thing. Sharing information you know, giving a space to put forward a clear argument (rather than trying to do it in 140 characters) and a place to write down the frustrations you feel. It also means you have a space you can point people to when you get into aforementioned Twitter arguments.
- Do something else. This is important. Campaigning and protesting is essential, especially now, but you have a life and health to think of and they should always come first. Take some time out. Spend an evening watching a film, go for a coffee with a friend, binge-watch some Netflix. Give your brain and soul a break every now and again. Don’t be too hard on yourself.
Keep informed, keep active, but most importantly keep safe. Be angry, but look after each other. Be motivated but don’t exhaust yourself. Keep fighting.
My PIP application and OT referral were submitted in February. I don’t expect to hear anything soon.
Various doctors (and a practice nurse) at my GP surgery have told me to increase, then decrease, then increase my medication. I am in constant pain but won’t be given stronger painkillers. I am in constant pain but am not allowed a referral to the pain clinic until I’ve been on my current medication (amatriplyline, 50mg) for a month, and then I have to try another medication (gabapentin), and then I might be allowed a referral. I am currently not under the care of any specialists.
I’ve realised I cannot do the work I so desperately want to do because I will not be able to manage it. I cannot get out of the house because I can’t drive very frequently any more, and leaving the house exhausts me. I am not eligible for social care.
So I can’t work, I’m in constant pain and I’m refused better pain medication or access to specialist care.
Exactly what the hell am I supposed to do now?
Mr Duncan-Smith is positively champing at the bit to get sick and disabled people back into work. He’ll get you back into work even if you’re comatose, his belief in disabled people working is so strong.
Clearly the “people in comas being found fit for work” is a terrible thing, but IDS really makes no secret about how much he wants us to work. Well Mr Duncan-Smith, I’m your gal. I have my own business, I am capable of getting myself enough work to make a full time job, I love my work and it’s even work that helps communities work better together, which is what your Big Society is all about. Mr Duncan-Smith, I am the girl you’ve been looking for. (I swear that line sounded less dodgy in my head).
However. As someone who has taken 6 months out of work due to becoming chronically ill, I do not see people who are trying to get me back into work. I am at the bottom of lists, I am under a pile of paperwork and I am at the end of strict budget cuts. Apart from the fact that I’m working in a line of work that is getting royally shafted from all sides by budget cuts (but that’s another blog entry…) I am waiting for Personal Independence Payments that, despite having applied for them at the beginning of February I’m not expected to hear anything until June. I’m applying for Access to Work which, despite its name, seems to be having smaller and smaller criteria as to what “access” actually means.
I’ll lay my cards on the table right here Mr Duncan-Smith. I’m chronically ill yet desperate to work. I’m a professional in a job that is all about Big Society (despite you sacking us all but y’know, whatever). I have my own business and I can make it full time if I just have the right support. Yet, you’re not willing to give me the right support. So if I can’t work, what’s going to happen to the people who have never worked who are now suddenly being told they have to? What’s going to happen to people who have even more limitations than I do? If I can’t get enough support to work, how the hell are you going to support them?
This is why you need to listen to what the Spartacus Network are saying. Beyond the Barriers was released to the public last Wednesday and lays out a practical way of getting sick and disabled people back into work. It means people who cannot work are not living constantly under the eyes of the DWP. It means those who are able to work get the correct support that is on-going. It means that sick and disabled people are not punished simply for being ill or being disabled.
I miss my job. I am desperate to go back to it and I’d like to believe Irritable Duncan Syndrome when he says he wants sick and disabled people to get into work. But he’s not doing a very good job of showing it.
Fibromyalgia just ain’t cool. And there’s statistical research to back it up.
Respondents [senior doctors, GPs and final year med students] were asked to rank 38 diseases as well as 23 specialties on a scale of one to nine. …Myocardial infarction, leukaemia, spleen rupture, brain tumour, and testicular cancer were given the highest scores by all three groups. Prestige scores for fibromyalgia, anxiety neurosis, hepatic cirrhosis, depressive neurosis, schizophrenia, and anorexia were at the other end of the range.
It doesn’t show it very accurately in that quote, but the most “prestigious” disease to treat came up as MI, and the least was fibromyalgia. Colour me unsurprised. Two of the “popular” diseases occur mainly in men (especially as one of them involves have a specific set of genitals). Two of the least “popular” diseases occur mainly in women. All of the “popular” ones are dramatic conditions, which either involve slicing someone open and tinkering with a specific body part or a thin line between life and death. The unpopular ones are mostly mental health, except for fibromyalgia (which a lot of doctors would say is in your head anyway) and heptic cirrhosis (found in alcoholics, so I imagine there’s a large “you brought this on yourself” element.)
To some extent, I see where they’re coming from. In the life of a doctor, the ER moments where a patient has blood spurting from many orifices and they’re on the verge of death are no doubt seen as very exciting. Similarly, getting to do brain surgery would earn you a lot of kudos. But I think there are some other themes that can be drawn out of this:
- You have to be able to see the condition, either physically or through a scan of some kind.
- There has to be a medicine or procedure available to fix said condition
- Mental health conditions are boring to treat
- Especially women’s mental health
- Especially women’s health issues where there isn’t a clear way to diagnose
Fibromyalgia doesn’t have a test to diagnose it, you can’t give drugs to cure it. It’s found mostly in women and you can’t physically see it. It doesn’t cause life-or-death blood spurting moments (I hope…) and so it’s a boring disease. So doctors aren’t willing to put in the effort to research it. It’s much easier to say “here’s a pill, it might help, go swimming and cut out the gluten” and send them on their merry way. While possibly thinking “she’s just hysterical, it’s probably all in her head.”
It is obvious that no-one is going to make a fuss about this condition, because so very few medical professionals actually care about researching what it is that makes us so chronically ill. So, as I’ve said before, that is why it is up to us, the chronically ill, to become the professionals. From our beds and sofas, in our pyjamas with our heat pads and blankets. And possibly stoned out of our gourds on heavy pain medication.
“I have this belief that if I can read a lot of science and do a lot of self-experimentation then I can turn this thing around.”
From now until the end of April, I’m going to spend as much time as I can manage researching. I’m going to read about what the latest research on fibromyalgia is telling us. I’m going to teach myself the arguments from the pro-psychosomatic camp and the pro-medical camp. I’m going to learn about what people think fibromylagia is, what treatments have been tested and what’s worked. Because no-one else is going to be interested in becoming an expert on my condition. So I’m going to become one myself.
So, this blog is going to come pretty fibromyalgia/chronic illness focussed for a while. There probably won’t be many youth work posts for a bit, but they will come back eventually. I just feel like I need to know what’s going on with my own body.
My body appears to be rebelling against me. Everything below my neck has decided it no longer wants to be under my apparently tyrannical control, and it wants to separate and become an independent nation. There’s a coup happening. Unfortunately, I’m not convinced of its ability to successfully function without the dictatorial leadership of my brain, and am refusing to let it go. It’s turning into a rather nasty stand-off.
So today I rang the DWP. I was expecting to be on the phone for the better part of a morning but I spoke to an actual human being within a couple of minutes. Which is a shame as I wanted that nice chap who plays Handel’s Water Music over and over again on what seems to be a late 1980’s Casio keyboard to have some more playing time. Anyway, I spoke to an actual human lady, who told me that because my PIP application was having such a nice time hanging out with Atos, it was probably going to be there for the next 14 to 16 weeks before it was ready to let me know what the outcome was.
So I sit and wait, and see if Atos decide they want to call me in so they can poke at my arms and legs and see if they’re really as knackered as I say they are. They probably will – I have one of those “but you don’t look sick” conditions so I imagine they’ll want to check I’m not making up the fatigue, excruciating arm, leg and joint pain, complete inability to sleep, horrible back and neck aches and the myriad of other fun symptoms that have appeared since this whole thing started. Let’s start taking bets now, shall we? What’s the odds on the assessor either a) not having heard of fibromyalgia, or b) if they have, thinking it’s one of them made up diseases?
I’m saying the odds are not in my favour.