All these things that you don’t know. It seems so much better that way.

Even now, despite everything, there are things I cannot and will not say.



After the years (and it has been years, now) of tests, needles, white blood counts, pissing in little bottles, waiting, sleeping in my own sweat, painkillers, vomiting and counting the isolated days, there are still things I don’t want to admit to.

The ulcers. Deep in my cheeks. On my gums.

The dreaded nausea, keeping me awake. The vomiting.

The itchiness. The sore throats. The coughing. The headaches. Chest pains. Shortness of breath. Dark, sickly urine. Stomach cramps.

All these things I am supposed to tell a doctor about at once, but part of me – the part which is stronger, more willing to fight – refuses to confess, because they are all symptoms which mean the methotrexate may not be treating me as kindly as the doctors had hoped, and all symptoms which may mean the treatment needs to be stopped immediately. I know it’s far from sensible, but what can I do? In the past few weeks, the pain and swelling has reduced dramatically. I can walk again. I. Can. Walk. Again. I can make a cup of tea. Sleep without being woken by knives digging into my skin. I can have sex with my boyfriend again. I can put a sheet on the bed. Shower when I need to – mostly. Arrange a bunch of flowers. Fasten buttons.

All small things. All things which matter.

Without the medication, I am nothing once more. I don’t want to be nothing.

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  1. More power to your elbow, I find it easier to be honest on my blog to strangers than I could be to a doctor or loved one – when I do share with loved ones they just seem a little confused and scared. The worst thing is to keep things inside, I am sure you agree that just writing them down makes things feel lighter and more hopeful.

    Good luck.


  2. I know exactly what you mean about wanting more to function than to speak up about side effects. Do be careful though, don’t let it carry on for to long or let them become much worse because it may lead to more severe complications. Being able to move and live is something everyone takes for granted until the times it is outright impossible. I hope it will all work out well very soon for you. Rest easy.


  3. Only just found your site – hope you’re ok and have been moving forward – I have only recently been put on meds which have given me my life back, and when I hang out on the net looking for answers and diagnoses and ‘reasons’ why I just felt so crap I was astounded at how so many people could have the same problem and take so long to be helped. I can now walk and function like a relatively normal human and I am so very grateful for it. I think my final thing is undifferentiated assymmentic spondyloarthropathy, but whatever it is, it stopped me walking properly for a year. Went through many meds, and while I’m lucky that the side effects aren’t so bad for me, they didnt seem to help that much. When my doc put me on one of the biologics (humira), I put my stick down 3 days after the first injection and haven’t picked it back up since – so very bloody grateful. Sincerely hope you’ve found someone who can find something that works for you.


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