An update

Hello. I wanted to take a bit of time to write and update those of you interested in what’s been happening to me. I am hugely lucky online to have a small army of people who seem to care about how I am, what a lovely lot you are. So here goes.

Those of you that know me well will know that I’ve had poor health for pretty much my whole life. It would come and go, I’d get a couple of bad years followed by some better, with a longer, more serious bout of illness in my late teens which took many years to recover from. What I find slightly embarrassing to talk about it is that they’ve never really been able to find out what’s wrong. I would experience very severe pain radiating out from certain joints and fatigue. At times this was labelled as Fibromyalgia or M.E., which in themselves are often umbrella terms that seem to cover a wide variety of symptoms, but no one could really agree what was happening, and I struggled to ‘fit’ a particular diagnosis. With the medical profession not much help, I decided to work hard on my own recovery. And to cut a very long story short, I did recover.

When I started getting ill again last year, I thought at first I was having a brief relapse – they did happen from time to time, with pain and fatigue nearly always a part of every day to a greater or lesser extent. But I got worse and worse and the symptoms were more and more different to what I’d experienced before. As well as an increase in the burning neuralgia pain I’ve long experienced, I started to get more and more neurological symptoms, intense pins and needles and weird numbness in my extremities and face, and sharp pain in my fingers and toes that was very different to pain I’d felt before, finding them difficult to bend. I’d get odd changes in my circulation and struggled to regulate my body temperature. I also started having problems with extreme dizziness and wooziness, with this eventually progressing to fainting, and episodes when I would feel very light-headed and then get trapped in this odd sensation of half-conciousness that would mean I had to lie down, drifting in and out till it suddenly passed again. Tests found my heart to be racing very fast at odd times, even when I was calm, or even resting. Fatigue began to infiltrate everything. And most frighteningly, I’d get times feeling suddenly very confused and disorientated, my vision even altering, like I was peering through a hot mist. The last one has been really horrible, especially.

All this was, to put it simply, a complete ballache. Life had just started getting interesting – I had fallen madly in love and was happier than I’d ever been, and I was loving exploring making art and writing and having adventures all the other things I love to do that give me so much pleasure. Life with my Kai was magic and loved being at home with him. I was active and positive and motivated and hugely baffled. I thought I understood my body’s propensity for odd ill health and things that would make it better but nothing I tried seemed to make the slightest bit of difference.

Needless to say, the development of all the above threw me back into a multitude of investigations and tests that dominated a great deal of last year. And, to cut another long story short, they still haven’t been able to pin down what is happening to me. Although they behave a little like seizures, I don’t seem to be having seizures. Although the symptoms fit diseases like M.S. and Lupus, tests don’t support that. And although my heart is definitely beating faster than it should at times, there is nothing wrong with the heart itself.

Through it all I have actually stayed pretty strong and happy. There have been some very low days, and at times I’ve been very frightened and increasingly confused about the whole thing, but a lifetime of not great health has given me a good ability to pick myself up and try again. My level of day to day function has dramatically reduced and this has been the hardest thing, to be honest. My degree has had to slow to a snail’s pace, Thankfully they’ve been very accommodating of deadlines, although it’s lost me my longer-term funding.  Although I can never claim to have made a huge impact on the world around me, with careers and study and other things always limited by this funny body of mine, I derive an enormous amount of sense of self from DOING. I’m never one to really sit still, with always half a dozen projects on the go and a head full of hundreds of dozens of ideas and thoughts and dreams and plans and and and. Yes. I do not like this slow, wobbly thing I seem to be and we are difficult bedfellows. But I’ve done alright. My mental health is good, the best it’s ever been really, and I have an unshakable belief in my own ability to survive and make the best of where I am.

It is getting harder though.

Yesterday my neurologist seemed to pretty much give up on me. As the head MRI they did recently was clear, she doesn’t feel they need to pursue further neurological or autonomic testing at this time which I guess is fair enough. Some vague talk about “complex syndromes” and “neurosensory and autonomic involvement” and I’ve been left till December now to “see how I get on”, while I wean slowly off one drug treatment in case that’s contributing to my fatigue, with the suggestion we might start a different drug next year. In the meantime I have been advised to seek more support from my GP. I gently tried to explain that I didn’t really want ‘support’, I want to feel better, but this didn’t really seem to get much response. People that don’t know me very well when reviewing my case seem to tend to assume that I must be depressed, or very demotivated, and are usually surprised to find that isn’t the case. I don’t think she knew what on earth to to do with me.

What’s weird is that my over-riding feeling is one of deep shame and embarrassment. Not having a ‘proper’ disease, I find it hard to talk about it, or explain. I have to fight very hard against feelings of very destructive worthlessness. In this busy world of labels and jobs and identities I find it hard to convince myself I have a place. I have a tendency to slip into thinking that this must all somehow be my fault, and that the symptoms are somehow my own doing, that I’m making things worse, somehow, or not doing the right things. I know this is pretty unhelpful thinking though, and I try hard not to let it win out the day.

Without a proper diagnosis, prognosis or treatment programme, things start getting a bit tricky now. Up to now, as a single mum, Kai has been young enough for me to be supported by the benefits system to be at home with him, but this changes as soon as he turns five soon, and my part-time degree doesn’t qualify me for support as a student. I had planned to return to work for 16 hours a week, probably some fairly lowbrow job but it would make ends meet. But now I don’t seem to be getting better, I don’t really know what I’m going to do. It’s all or nothing in the benefits world – either I will need to work 16 hours a week, or I will be put on sickness benefits and have to prove whether or not I’m ‘fit for work’ – a phrase in today’s political climate that has taken on some fairly heavy and depressing implications.

It frustrates me a great deal. I want to work, to support me and my boy, and to be able to do something day to day, even if it’s something little, to try and make other people’s lives a bit better, and to feel useful and worthwhile. I want to be pursuing my talents to make and create. I don’t want to be sick and on sickness benefits. But even so, I can’t work that many hours without a basic level of physical function, and that doesn’t seem to be something available to me just now. I wish there was an 8 hour a week option, or a 12. Anything.

I am still very hopeful it will get better. Every period of bad health in my life has got better, even if this time has been a different kettle of fish and I don’t really understand what I’m dealing with, and I’m confident if I can keep looking after myself, trying to stay positive and as healthy as I can, I will eventually improve. I am a great believer that life is about challenges, not problems, and that I have the ability to overcome anything, if I take responsibility for it and am brave.

I guess the trick is going to be crossing each day as I get to it. I start every day with the aim to make it something worthwhile and I will continue to do that. I will continue to celebrate all the little things, and let joy find me, because I am very, very good at that, and enjoy time with my funny boy and my big lanky man who I adore, and who has been so unwaveringly patient with me through all this.

I guess what I’m trying to say is that I’m very lucky, really, something I try to remember every day, and that one way or another it’ll all be okay.

I’m finding being online a little bit difficult at the moment. Like I’ve said, I find talking about this stuff weird and hard, and over the last few months it’s ended up being easier to let go more and more of Twitter and blogging and say as little as possible. I’d very much like that to change though, I miss the company and the expression, so I hope by getting all this out and over and done with, I can try and get back to some level again where I don’t feel like I need to hide, although low energy means I have to be a bit careful what I invest my time in, it takes very little to wear me out at the moment, pathetic weedy weed I am ! To everyone that’s kept in touch, via email and private messages and Facebook, thank you so much. The friendship of some of you has been invaluable and a source of enormous strength.

Thank you for reading.

love, Josie Porridge x

P.S. When you give an account like this, and because people care, people’s response often tends to be to offer advice, about diets or alternative therapies, or “I know someone who…” and as much as I appreciate the thought, and I do, it can be a bit overwhelming, especially after a lifetime of trying one thing or another. So for that reason, if it’s okay, I don’t really want to hear about cures and such, I’m sorry if that comes across as rude or ungrateful. Many thanks to you.

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