Sunday, April 17, 2016

On (finally) getting a diagnonsis

As most of you know, I've been ill for some time now. Roughly two years in fact. For the first few months I thought I was just over-worked, burned out. But when my physical symptoms didn't improve, even after taking some months for self-care I realised something was actually wrong.

I was tired all the time. No, tired isn't the right word - I was bone weary exhausted. The slightest exertion would put me in bed for days. And no matter how much I slept, it was never enough. My body felt like it had been filled with concrete and I felt like I was moving through treacle rather than air. But possibly the worst for me was the constant brain fog. An inability to concentrate, to think clearly, to rationalise. Sometimes, even putting together a sentence was too much. Gary and Cas have become adept at interpreting my random mumblings and arm wavings.

After roughly 6 months of these symptoms I went to my doctor and discussed a few things. I had friends with ME/CFS and Fibromyalgia, so these were the first things I thought about. The doctor agreed that it could be ME/CFS, but we needed to rule out other things first. So, I had blood tests taken.

When the results came back, the GP asked if I'd had a cold or something when I went to have the blood taken. Nope. Well, my T-Cell Count was elevated, indicating my immune system was doing something. So, we repeated the tests. This time I had some inflammation markers and the GP wanted to rule out Rheumatological disease. So he sent a referral letter to the Rheum department at our local hospital. And I waited. And waited. And waited.

It took about 6 months. During which time my condition got worse. I couldn't walk any kind of distance (even walking around the supermarket to do the shopping was too much). We'd become trapped by my illness, because a day out was out of the question. Finally, after much discussion and hesitation we decided that we'd buy a wheelchair. We figured it would give us back some of our quality of life, we'd be able to have days out again.

I saw another GP around this time, He was quite young, and obviously VERY misinformed about ME/CFS. I had gone in because I was starting to experience a lot of pain, and I wanted to get some stronger painkillers. He was not nice. He treated me as though I was 'drug seeking'. And when I mentioned about the wheelchair he told me that I shouldn't get one because, "that's giving up". What I needed to do was "buy a cross-trainer and do some exercise everyday. Start with 10 minutes, and don't stop when you get tired. And build up. You just need to build up your stamina".

Needless to say, I came out of this appointment got into my car in the car-park and rang Gary sobbing hysterically.

This GPs advice stems from the Graded Exercise Therapy treatment for ME/CFS. But it is a complete bastardisation of this therapy - even the NICE guidelines state that this type of treatment should only be done under the supervision of a trained professional. And that's before you even begin to examine the literature around it's effectiveness - which seems to indicate that it makes many patients MUCH worse.

I didn't listen to this GP. In fact, once I'd calmed down, I was furious. I still am. I wonder what he'd say now, with my new diagnosis?

So, anyway. My rheumatology appointment finally came around in mid-December last year. The Rheumatologist I saw was really thorough and at the end of the appointment he told me that he suspected I have Lupus. The only time I'd heard about Lupus was through it being mentioned on House, so I had no idea what the diagnosis meant. However, it did seem to make sense, because instead of suffering from several different conditions (chronic migraine, skin condition, ME/CFS) all of these things were part of the Lupus. And most importantly, there was a treatment. A pill that I could take that should make me feel better. I left that appointment feeling the first bit of hope I had felt in about 18 months.

I know that may seem strange, that I was happy to be told I probably had a serious medical condition; but I'd had 18 months of trying to get people to believe me when I told them how sick I was. Months dealing with the 'yuppie flu' label thrown at those with ME/CFS. And months of my health just getting worse and worse. Finally, someone was agreeing with me that my body wasn't working right. And more importantly telling me they could fix it.

The Rheumatologist ordered more blood tests, and I had these done between Christmas and New Year.

Over Christmas my health got worse again, Much worse. I was in constant agony. My hands, feet, knees and hips stiffened and HURT. Like lying in bed crying, hurt. Like, take all the painkillers you can, get maybe an hours reprieve (where the pain lessens, becomes bearable, but doesn't completely go) and then back to crippling agony again. When it came time to go back to work after the New Year, I couldn't get out of bed.

You know, I'm still not making clear how sick I have been - I haven't been able to bath or shower myself in over a year. Even when I was feeling 'good' and going to work, I'd come home and collapse. I couldn't move, couldn't make food. So Gary has been bathing me for all that time. Most days I can't get dressed, because if I did I'd be too tired to do anything else or I'm in too much pain. Often, Gary has to carry me up and down the stairs because my knees and hips hurt to much to carry my own weight up them. I lost all of my independence. Since Christmas, I've left the house maybe a handful of times (and that includes trips to the Doctors/hospital).

So, come mid-January I'm starting to get frustrated. I'm waiting on the results from the Rheumatologist's blood tests. So, I ring the hospital and get put through to his secretary. She tells me that I was Vitamin D deficient, and my GP should treat me for that. And that the immunology results haven't come back yet. I get the Vitamin D from my GP, it makes no difference to my symptoms. So at the end of January I chase the Rheumatology dept again. I speak to the Secretary and she tells me that my results have come back, but won't tell me what they are. She assures me that if I needed to be on treatment I would be, and that I'm 'on a list' waiting for new clinic appointments to see the Rheum.

After this phone call I was devastated. I believed what she told me about the treatment. Which meant the blood tests had to be clear and it wasn't Lupus. I saw my dreams of an easy treatment, and improvement in my health, vanishing. I cried, sobbed on the phone to Gary.

But, the more we talked about it, the less sense it made: if my blood tests were clear, why did he need to see me again? The Rheum knew I had been sent to him to rule out other diagnoses before being referred to the ME clinic. So why would he waste my time and his to see me again if the results were clear? Why not just write to me/ my GP and say there's nothing Rheumatological wrong.

In early February I had another appointment with my GP, and I discussed this with her (my original GP retired in December, and I am still heartbroken, coz he was awesome). She agreed that what the secretary was saying didn't make sense, and said that they would chase it up.

Around a week later, I got a call from the GP surgery, in which they told me EXACTLY what I had already been told by the Rheum Secretary. I was fuming. They hadn't gotten any further than I had, and when I challenged this I was told to ring the Rheum secretary myself and 'explain it all to her'. Like I hadn't done this several times already.

By this point work were beginning to get a little antsy and I was starting to get really worried about keeping my job, I had nothing new that I could tell them, no idea if I was going to get better or when I might be able to return to work.

So, I waited for my appointment. In constant agony. Unable to care for myself. Unable to leave the house. Pretty much bed ridden. Until the beginning of April.

I made Gary take the day off work to come to the appointment with me. I'd done some research, and now believed that Lupus is the correct diagnosis. There were other symptoms, that I'd not really thought about, that were explained by this diagnosis. And I also knew at this point that blood tests alone could not diagnose/rule out Lupus. So Gary and I went to that appointment ready to battle for a diagnosis of Lupus and treatment.

At this appointment we were called in to see a nurse, we thought initially for a chat before seeing the Rheumatologist but it became apparent quite quickly that this wasn't the case. I explained that I was experiencing worsening symptoms and that the Vitamin D hadn't helped (I mean, really?! Did they actually think a vitamin D deficiency could explain how poor my health had been for over a year?!)

After a few minutes the nurse explained that my blood tests had been inconclusive. My double stranded DNA test was positive (I'm not really clear what this test is, but it's something to do with anti-bodies and break down of proteins, I think) but none of the others were. This is apparently 'unusual' (yeah, typical of my body to be weird). So the nurse said that she wanted to repeat some of the tests. She went off for a chat with the Rheumatologist and came back saying that my diagnosis is 'Mixed Connective Tissue Disease or Lupus'. She said I don't have enough of the symptoms of Lupus for a diagnosis without a positive blood test (I disagree, and actually the Rheum pretty much told me I had enough for a Lupus diagnosis in the first appointment. He ordered the blood tests to confirm the diagnosis). But, she said the treatment for both conditions is the same, and she gave me a prescription. She also told me it would take about 8 weeks for the medication to have an effect.

At this point Gary was furious (though he was polite and civil about it). Why hadn't they told us this when they got those blood test results on the 29th January? Why had I spent two months in complete agony when I could have been on the treatment? Her response was 'you should have rung us', to which I replied 'I did and so did my GP'. Rather than offering an apology or attempting to understand our point of view the nurse got defensive. She told us that whoever had reviewed my results had seen that I was being called back in to the clinic and decided that the diagnosis and treatment could wait until I came back in. I could almost see the steam coming out of Gary's ears. He asked if someone would contact me this time about the results of the blood tests and the nurse replied that, no they wouldn't, but 'it doesn't matter anyway because you're on the treatment now'. So apparently having a name for my disease is completely unimportant!

I've been on the medication for 12 days now, and although they told me I wouldn't feel any different, I do. I've had less pain, and the fog has lifted. Some of this may be placebo effect, but whatever, I don't care. I'm just glad that I feel better. Over the last twelve days we've alternated between being furious with how I have been treated, by my blood test results and diagnosis being withheld; and being excited and hopeful about how much better I'm going to get now I have treatment.

It's been a long and hard journey. It's taken 2 years. During which time Gary and Cassius have had to care for me. They've been amazing and I couldn't have asked either of them to be more understanding or supportive. But we finally have a light at the end of this very long, very dark tunnel.

This post may meander a little, it may seem unfocused and not have a clear point or path, but that's because that's what this journey to a diagnosis has been like, It's been a confusing and frustrating mess, filled with pain and exhaustion. But, hopefully, we're through the worst of it now.



Friday, October 9, 2015

I'm coming out................as Working Class

There has been a lot of talk on my twitter timeline recently about class. Specifically the tensions of negotiating Middle Class spaces as a Working Class woman; and whilst I don't intend to add my comments to what's been happening it has given me the impetus to write this post.

So, this is me, coming out as Working Class: I'm a working class woman, trying to negotiate the very foreign world of academia and I have some thoughts I want to share on this experience.

I grew up on council estates, after my family home was repossessed in the recession in the 1980s because my parents could no longer afford the mortgage. I watched from an upstairs window as my dad argued with the bailiffs when they came to repossess the car. We didn't have much money when I was growing up. My parents worked in low income jobs and life was tough. At birthdays and Christmas I grew so used to being told "We can't afford that" that I stopped asking for expensive gifts. I remember one year when I wanted a Ghettoblaster for my birthday, and it nearly broke my parents paying for it.

I'm the first of my family to get a degree. So when I returned to university as a mature student, I had no frame of reference. Despite this I fell in love with it. I felt at home at university, like I'd found my place. For me academia is a world full of learning, challenge, debate and knowledge sharing. But, from day one I glossed over my past. I VERY quickly realised that being working class made me different, made me other. So I just didn't talk about my childhood. I nodded and smiled as others talked of the help they got from parents and the family holiday's they'd had to far off countries.

As I moved from being a student to working in academia this feeling of not belonging deepened. My colleagues are overwhelmingly middle class, and this is difficult, because I don't know the rules of the game. I can't do the academic politics thing, I have no idea how. And this has led to me being scapegoated and shit upon on more than one occasion. I wish I could say that this was by academic men, but unfortunately it's been by middle class women.

When the shit hits the fan, working class people band together, they close ranks. The middle-classes however, are out solely to protect themselves, even if this comes at someone else's expense. And in a middle class world a working class woman is very exposed to this. I expect that people will stick with me, but they don't. And every time it has happened I've been deeply hurt and shocked. This is not how people behave.

When I was a young mum, living in my own council house with an abusive husband it was my working class friends that helped me survive. We shared food, lent money to each other, shared baby formula and nappies. We kept each other going. This is what I expect from other women, this sisterhood. So it's completely alien to me when other women have used me to forward their own agendas and discarded me when things got difficult.

Negotiating the world of academia as a working class woman is hard. Everyone understands my marginalisation for being a woman, but no-one seems able or willing to even talk about how I am marginalised by my class (not even me, up until now). I don't know the rules, the codes, for how to behave. And honestly, from what I've experienced of them, I don't want to play the game by those rules.

My experience has been that in academia there is a very individualised culture. Everyone looks out for themselves, others be damned. But I come from a collectivistic culture, where the survival of everyone is more important than any one individual. It's almost impossible to square this circle.

(I was going to say that it's 'not all middle class academic women', but come to think of it, the women I know in academia who have been helpful and supportive come from working class backgrounds).

I've spent the last 7 years trying to pass as middle class, and I've been fairly successful. I'm smart, articulate and educated, so I can ape it, sometimes. But it's an added workload and I'm tired of wasting my energy pretending to be something I'm not. I'm tired of trying to be smaller, of trying not to be too loud, too sweary, too balshy. Of doing everything I can to disguise my working class roots.

There's a big push in academia at the moment around diversity and inclusion, but still no-one is talking about class. Oh, there's the 'widening participation' agenda aimed at getting more 'poor' students to university, but no-one is talking about what happens to them once they're in. And we should be, we need to be, because academia is a hostile environment for the working class.

So this is me, coming out as working class. Saying I'm proud of my roots and what I've achieved. And also saying, you need to take a long, hard look at yourself academia. A really good look. Recognise the class privilege that drips off almost every one of you and how your thoughtless, self-serving actions can ruin the life of someone like me. If you really want to be inclusive you've got to start thinking about including the working classes in your precious ivory tower.


EDIT: I went on a bit of a twitter rant with some more things I had to say, storify here 

Thursday, January 1, 2015

2014 - An interesting year

What can I say about 2014? It's been an interesting year. I started 2014 in the midst of what was essentially a nervous breakdown. Very few people knew (or to date, know) about my mental health problems this year. Not because I'm ashamed of them, but because I tend not to talk about that type of stuff often. The reasons for my mental health issues were myriad, and I'm still dealing with some of the fall out, but on the whole, I'm better now. 
I spent the first half of the year hiding in bed. Unable to go to work, unable to play with my son, unable to do anything....except read and crochet. So I read, LOTS. Mostly feminist theory, and I learned lots. I also crocheted LOTS and I've gotten pretty good.
2014 is the year I finally acknowledged that my migraines were a disability. That I wasn't a 'normal' person who got ill sometimes, but a chronically ill person who needed to take self-care more seriously. This lesson was hard to learn, but it couldn't have happened at a better time, because in the last few months of 2014 I was diagnosed with ME/CFS. And now I really have to accept that I can't do things the way I used to.
So far this post seems a little gloomy, but these experiences have led to some positives. My health issues led me to @phdisabled and a community of others in academia with chronic illness/disability. I realised that the struggles I had faced were not just my experiences. That academia has a culture that excludes those like me. That this culture is pervasive and subtle and easily internalised. And I got angry. I found myself speaking out on twitter, writing for the PhDisabled blog and joining the group to help change things. In essence I joined a campaign. 
My feminist reading also gave me a better understanding of sexism and women's oppression. And this made me angry. So I used my voice. Online and off. I became that feminist that my friends sometimes roll their eyes at, and I'm proud of this. ;) 
These two passions opened up new possibilities, and combined with my passion for all things STEM I began to see a new path for my energies and talents. In the summer, I won what I thought was the PERFECT PhD position. And we began to plan a move to London.
Then my gran got sick, and I had this feeling that she wasn't going to get better. Things with the London move became more and more complicated and I realised that I was going to have to make a heartbreaking decision. I withdrew from the PhD place. I felt cheated! Why would this opportunity come along if I wasn't able to take it?
Around this time my gran went into hospital again, and in early September she died. Suddenly not moving to London seemed right. I got to see my gran a few days before her death. I got to say goodbye. We should have been in London by then.
My gran's death hit me hard. Though I had prepared for it, I was still devasted. I was close to my gran as a kid, and there's so much I could tell you about what she taught me. But I'm saving that for another post, when I'm ready. 
By my birthday in mid-september, I had had enough of 2014. It was a crap year! I just wanted it to be over. I felt exhausted. Wrung out. I literally couldn't take any more. 
Then I got a great job, working in public engagement, with an amazing team of women. Suddenly going to work was fun and things seemed a little brighter. Maybe the year was going to end on a good note after all. 
One day, a month or so into my new job, my manager called me into her office. I felt like a schoolkid being called in to see the headteacher. But she wasn't telling me off, far from it - she showed me a job that had just been posted on the uni network and said
"You HAVE to apply for this. You are PERFECT for it"
I looked over the job description and can honestly say it was like someone had written the perfect job for me. I applied, with hope, but no real expectation. I interviewed at the end of October and I started the job at the beginning of November. And I bloody LOVE it. The job is AMAZING. I'm working on diversity in STEM in HE. I get to have a direct effect on policy (even if it is only at one university). This job uses all of my skills, stimulates my brain and satisfies that eternal curiosity. If you'd told me in Septmeber that I would finish 2014 on a high, I'd probably have killed you. But I have. I CANNOT wait to get started on 2015. Despite my grief, despite my health issues, I'm facing the new year with excitement and looking back on 2014 with some affection. 
Happy New Year!