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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.

 

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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.

 
6 Comments

Posted by on November 3, 2013 in Every day life

 

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Bed.

I’m hoping that eventually my promise to keep up with this blog will come good. For now… perhaps not. Everything feels hectic. Recent comments I have received on old posts have knocked my confidence. I’m just still so tired.

I have an appointment with my GP early tomorrow morning. S is asleep right now, full of cold. Bed seems to be the answer. As usual.

 
8 Comments

Posted by on September 26, 2013 in Every day life

 

Got me on some medication

As of Friday, I’m back on the methotrexate/folic acid. I can’t say I’m looking forward to the side-effects again, and the thought of going back to spending the weekend wrapped in a blanket, simultaneously freezing cold and boiling hot, fighting down nausea and being more fluffy-headed thinking than usual is bringing me down. There’s already been so much sickness.

But what can I do? I made the decision to take the drugs.

 
6 Comments

Posted by on August 29, 2013 in Every day life

 

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On a weekend I wanna wish it all away, yeah.

Day one of no prednisolone has been a small disaster. With most drugs, the effects stay in your system for a little while, but my experience with steroids has been very different; the day after the final dose is taken, everything returns. It’s what happened with the rash on my hands and feet. Less than 24 hours and I was covered again. So it’s no real surprise that today revolved around a renewed pain and stiffness – especially stiffness. I’d forgotten how limiting it can be.

I’ve been sleeping in the spare room recently, and last night was no different. There are a number of factors as to why – the air is cooler in there, the little white single bed has an orthopedic mattress, I feel safe surrounded by “my things” (it’s almost a copy of my old bedroom at my mother’s house; entirely subconscious on my part but it does give me a recognisable haven to retreat to) and I also feel safe knowing the only person to witness the pain is myself. After all, just because it now has a name and a reason, doesn’t mean I’m not still somewhat ashamed to be seen squirming around like a wounded animal. I feel horribly like a burden when S hears me complaining, so I try to limit how often I open my mouth on the subject. It’s difficult. On days such as today it envelopes my entire being.

 

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So. S and I have lived in the flat for almost a year now. Crazy how time passes in such strange ways. The last twelve months have been some of the hardest of my life, yet I got through it somehow. I confess to having no idea how that happened, as I’ve been stuck behind walls of varying painkillers, watching the world go by. As it is, the morphine is doing very little for the ankle pain – the discomfort and stabbing feelings seem to come from inflammation, and it’s only going to get worse now I’m off the prednisolone. I can’t take NSAIDs either. My mother is going to speak to my rhuematology nurse next week to see if there’s anything at all they can do before I see the consultant in October.

I’m just not convinced I can keep doing this. Waves of pain. Brief relief, then it all comes back, worse than ever.

I’m feeling a little despondent.

 
8 Comments

Posted by on August 25, 2013 in Every day life

 

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It could have been a brilliant career

It seems keeping up with writing isn’t something I’m very good at now. I’m not sure I understand it; the time is there, but it all seems like such a chore. It feels a little unfair saying that since this blog has been a lifesaver for me on more than one occasion, but the days of typing thousands of words regularly seem to have disappeared. Perhaps it’s simply a lack of concentration – my GP has doubled the prescription of slow-release morphine and it’s a knockout dose, even for me.

However, I do feel like writing a little tonight, if only to distract from the nagging coming from the Infamous Ankle. The prednisolone course finished yesterday; it hasn’t been particularly effective for a couple of weeks now, since the dose reduced to one a day, but I’m still worried what the next few days will bring. The morphine helps but only does so much, as the pain appears to be coming from the actual inflammation of the tendons. I now know that’s a normal symptom of psoriatic arthritis, and I’m feeling slightly bitter that there were so many signs of this over the past two years. So many signs. They could have had me on steroids earlier. The prednisolone exceeded all expectations on the higher dose and I was able to walk almost normally and my sleeping patterns improved hugely. For the first time in years I was able to see my ankle bone, and my shoes fit properly. The joy on the first day I could walk to the local shop was… well, I was very, very happy. S and I even took a walk around the block, as I haven’t been able to do that once since we moved in almost a year ago. I missed a lot, all because the doctors missed everything.

Still… can I afford to be bitter? Probably not. I’m going to be stressed enough with the inevitable return of the ankle swelling without piling more problems on top.

 

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I also finished the methotrexate course last week. That drug has been a… nightmare. A pure case of the cure being worse than the illness. I’ve been repeatedly asking everybody why I’m putting myself through the side effects – vomiting, constant nausea, sweating like a pig, sleeplessness, mania – even though I know it was my choice. I didn’t rush into taking MTX; I considered it over a week while I waited for x-ray and blood results to check I was able to take it in the first place. I considered it incredibly carefully.  In all my years of medications, I’ve never taken such a dangerous drug and it was a difficult decision. Still… I think I made the right one. If it slows the progression of the disease, surely it’ll be worth all the sleepless, sweaty nights with a bucket by my side and a helping of paranoia?

I hope so. Strangely, I feel even worse for not taking it this week. I just hope this isn’t a sign of things to come.

 
13 Comments

Posted by on August 24, 2013 in Every day life

 

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So I’ll start a revolution from my bed

There is absolutely no point in forcing yourself to write a personal blog if you have more important things to worry about, and those worries have been the reason behind the long absence between posts. I have missed this blog dearly; although I knew it was helping me I didn’t realise quite how much until writer’s block hit and life got somewhat in the way. That’s not to say I haven’t had time – I’ve had plenty, more than I can begin to visualise – but that time has been taken up with difficult sleeping habits, medicine regimes, appointments, depression… I’ve experienced the full range of, well, everything recently.

Seronegative symmetrical psoriatic arthritis. Somehow, even the name sounds complicated.

Throughout the past couple of years I’ve often wondered how I would feel if it did all turn out to be real. For even though I’ve had very clear physical symptoms and (eventually) positive X-rays and an MRI, there has always been a small voice in my head saying, “but you lie. You always lie”. All the doctors who wouldn’t listen and the people who suggested it may just be overreaction on my  part… they were wrong, and I was right. It’s a strange feeling for somebody who isn’t used to being right.

 

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Now feels like the right time to begin writing again. A month after my diagnosis, and I’m just about beginning to pull things together. There’s a lot to concentrate on – I’ve been put back on steroids (Prednisolone, this time) and have also been put on a course of Methotrexate, along with Fentanyl patches (which refuse to stick in this heatwave but otherwise they’ve been fantastic at dealing with the ankle pain) and codeine still if I need it. I have varying specialists dealing with my case, a nurse, and am also attending a pain clinic for physiotherapy, counselling and relaxation, as well as any medications/pain relief if needed. Everybody has been lovely, from the rheumatologist who diagnosed me to the occupational therapist I saw on Friday morning. The difference from simply changing hospitals has been enormous, and I’m so thankful to my GP for understanding why I no longer had any faith in our hospital. The time from first seeing the new rheumatology team to diagnosis was two months. My local hospital achieved nothing except further damage in over two whole years, all because they never scanned me.

I haven’t quite accepted the diagnosis yet; I suspect it’ll take while. Although I knew something was wrong and even though I considered inflammatory arthritis as a possibility for a long time, nothing quite feels real yet. However, I don’t feel the sense of hopelessness which has dogged me for months and months; a weight has definitely lifted, even if newer weights have been added at the same time.

I am trying not to look at the past year as a waste, but I must confess to feeling resentful; I spent a year unable to walk without extreme pain – and, over recent months, have been unable to walk at all and have spent my days indoors relying on crutches to get to the toilet) – and I do feel cheated. All it would have taken was an MRI. All they had to do was listen to my history. They didn’t though, and as a consequence I have lost a year of my life to pain.

It’s hard to know where to start rebuilding.

 

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22 Comments

Posted by on July 21, 2013 in Every day life

 

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The beast has a name

“And if you must, go to work – tomorrow
Well, if I were you I wouldn’t bother
For there are brighter sides to life
And I should know, because I’ve seen them
But not very often.
Under the iron bridge we kissed
And although I ended up with sore lips
It just wasn’t like the old days anymore
No, it wasn’t like those days
Am I still ill?”

- The Smiths, Still Ill.

 

Seronegative symmetrical psoriatic arthritis.

It wasn’t all in my head.

 

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3 Comments

Posted by on July 21, 2013 in Every day life

 
 
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