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?

None of the “cool” doctors want to treat fibromyalgia.

Fibromyalgia just ain’t cool. And there’s statistical research to back it up.

And I quote:

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.”

Jen Brea, Canary In A Coalmine trailer

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.

Access To…What, Exactly??

On Sunday it’ll be one month since my PIP form arrived at the DWP. I thought I’d celebrate by calling them on Monday to see if they actually received it (as I’ve not had the “You didn’t send your form back” letter but I also haven’t had the “we’ve got your form and we’re going to put it in a large pile for the next six months” letter). So we’ll see how that pans out. Prediction: it’ll be painful.

Up until last week I’d pretty much only been thinking up to my rheumatology appointment, like it was going to offer me all the secrets of being able to function again. In the end, the appointment was a little underwhelming and now I have to think about what to do next. My long-term goal, however, is that I want to go back to work. Now because I’m not *completely* stupid, I’ve realised that my ability to work may not be as it once was. I love my job, however, and I’m willing to do whatever I can to try to get back to it.

One option to help me out in this is the Access To Work scheme. Once a very effective way to give disabled people the support and equipment to help them have a career, now a long list of things you’re no longer allowed to have. Good luck finding a way you can be supported by the scheme if you need a specialist desk, chair, computer equipment or office equipment because they now no longer supply these. So, in a perfect world, if I wanted to go back to work tomorrow, what would I need?

  • Someone to drive me to work and back. I live an hour’s drive each way from where I work. In order for me to still be able to work once I get there, I’d need someone to do the driving for me. Also, if I wanted to be pain-free while working I’d have to take painkillers, and I’m not fond of driving on painkillers.
  • A way to get around while I’m at work. Maybe not completely essential – I could run my youth work sessions sitting in a chair all evening, if I really had to – but it’s difficult to take charge of a group of young people when you can’t move around.
  • Someone to help with the lifting and carrying. I’m self-employed,my office is my spare room. I’m a youth worker, I use a lot of resources. When I’m working, the back of my car is normally full of them. As I’m currently not able to lift anything heavier than a small cat, some help carrying and moving boxes of resources would be needed.

And that’s pretty much it. Not a lot, but if I had that I could go back to work tomorrow. Literally. However. From reading accounts such as BendyGirl’s attempts to access the ATW scheme, I know full well that I’d probably have a full recovery from my chronic condition before anything like these support means would get put into place. I could get a job closer to where I live, and I’m in the process of looking into how I might be able to do that. But the project I currently work on I’ve worked on since 2007, when I started it. It’s about to go through a couple of years of MAJOR change that I and the community and the young people have put years worth of work into. Would you want to pull out of your job at such a crucial time?

No. Me neither.

I am *desperate* to go back to work. I have other projects and things up my sleeve that I can do at home while working really isn’t an option but I want to go back to work. The thing is, I don’t know if I’ll actually be able to. And it’s not because I can’t work – I can work! I have been working and I want to work again! But accessing my job is a lot more difficult now than it used to be. I hope I get some support, somehow.  But I’m not holding my breath.

A Day In The Life of a Newly Ill Person

* 6am: Wake up  Realise you hurt but you can’t take your pain meds yet or they’ll wear off too soon. Put on Radio 4 Today programme. Browse Twitter. Go back to sleep around 7.00am

* Between 8/9am: Wake up again, . Vision is fuzzy, whole being is fuzzy. Realise that your pain receptors are waking up and lie in bed awaiting inevitable.

* Between 9/10am: Get out of bed  Realise getting up this late makes you dirty scrounger, decide to open living room curtains to show neighbours that you are up, even if you and husband still can’t get out of PJs or bed.

* Make breakfast. Make coffee. Take meds. Do all of this before pain truly kicks in because you have to eat and if you don’t do it now you never will.

* Switch on computer at desk, as sitting at desk makes you feel productive and like you’re achieving something. Plus you can only sit at desk during your most awake/pain-free hours of the day, which is now. Browse Twitter, read blog posts, work on bits of work you’re doing. Feel accomplished. Feel intellectual. Feel like you’re fighting against benefit scrounger rhetoric!

* Feel slightly less accomplished when you realise that, in a Before Illness (BI) world this was your least productive time of day as you are not a morning person. Reflect on how your perception of “productivity” has shifted. Realise you haven’t showered since last week and haven’t changed your pyjamas in three days. Reflect on how your perception of “cleanliness” has shifted. Drink more coffee.

* Noon: Realise fatigue is kicking in. Realise it just took you five attempts to type “realise”. Realise your legs/arms/back are starting to hurt. Realise that you’re now sitting at your desk in a slightly sideways slumpy way. Moan about the fact you can only take your medication twice a day and you’re not allowed any until dinner time. Grumble.

* 1pm: move laptop to sofa/bed as you can now no longer sit up in chair due to pain. Have maybe another half an hour on computer before your brain goes “nope, not happening”. Realise your fatigue is too much for reading/watching tv/doing anything except lying down in a darkened room. Put on audiobook to entertain brain. Think about how upset some people would be that you are on benefits yet have iPad to play audiobook on, despite iPad being gift and obtained BI (before illness). Decide you must actually be dirty scrounger after all.

* Approx 3 mins later: turn off highbrow political audiobook you were listening to under guise of being intellectual, put on audiobook of The Fault In Our Stars instead as it requires less concentration.

* 4pm: Open eyes. Realise you’ve been asleep. Blink for a while as you work out what day it is/what room you’re in/own name. Realise it’s the afternoon. Head feels full of cotton wool. Get annoyed at having slept as it now means you won’t sleep later.

* Attempt to use computer. Brain fog too high. Have moment of wonderment as you remember this used to be one of your most productive times of day and wonder how you used to be able to work. Struggle remembering what your job was. Wonder if this is what government means by “work-shy”. Decide to continue marathon of The West Wing on aforementioned iPad. Realise how this piece of equipment is essential to your continuing sanity. Realise how many people would prefer you sell it for money as not allowed nice things because benefit scrounger.

* 5pm: Remember that you should probably eat and that you forgot/slept through lunch. Consider food choices. Realise energy levels mean any food that involves getting out of bed is too much effort. Consider fact Social Services do not feel you qualify for Adult Social Care, despite not being able to make own dinner.

* 6pm: After repeated poking from husband, concede that you should probably eat something. Walk into kitchen. Admire cleanliness of kitchen, give thanks for awesome people prepared to come over and do things like clean kitchen. Prepare microwave meal, feel very accomplished. Wonder if it’s going to be time for bed soon. Realise pain levels are going up again. Take painkillers. Laugh at futility of taking painkillers as you know they won’t do anything.

* 7pm: Rationalise that it’s perfectly acceptable to call 7pm “bedtime”. Sudden realisation that you’ve been in bed since 1pm anyway so point is moot. Have moment of reflection that in BI times you’d be running youth work sessions for groups of young people about now. Compare to self not being able to make own dinner PI (post-illness). Go back to watching The West Wing.

* 9pm: Switch off West Wing, turn on audiobook. Set sleep timer for 1 hour.

* 10pm: Audiobook switches off. Switch back on and set sleep timer for 1 hour.

* 11pm: Audiobook switches off. Switch back on and set sleep timer for 1 hour.

* Midnight: Audiobook switches…oh you get the idea. Think on irony of being exhausted all day yet unable to sleep

* Some unknown point: Fall asleep in a dribbly way, audiobook still playing. Wait for cat to wake you up in a few hours.