Brother and Sister

Late last year, Z told me of a friend who was looking for a home for his two cats. Both a year old, brother and sister, one ginger and white, one black and white. S and I had been considering getting a cat for a while but always put it off due to my concern that the physical issues would make caring for them difficult while S is at work all day; I’ve found looking after myself hard and have had to forgo showers and basic self-care at times due to the stiffness and pain.

However, I admit to falling in love. I grew up with cats always in my life and since Molly died of kidney cancer years ago I’ve been reluctant to go through that pain again. I’ve always known that a cat is what’s missing, though. Over the next few days S and I weighed up the pros and cons and came to a decision – that the positives would outweigh the negatives and I had plenty of support if I found caring for them difficult.  We decided to go for it.

A week before Christmas, Stimpy and Magrat came to live with us.

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I am in love; two cats have never been so adored. Aside from a major anxiety freakout when Stimpy went missing for three days, the negatives have never materialised – in fact, caring for them has made a huge difference to both my mental health and my mobility. Agoraphobia is a lot easier to deal with when you have two silly creatures trotting after you, and I no longer feel lonely during the day. Feeding them forces me out of bed and onto my feet, and even on my worse days I have very little choice; which makes a huge difference to how I deal with the hours stretching in front of me.

In such a short space of time, they have turned my world around and shown me that giving up simply isn’t an option. I can no longer lie in bed all day feeling sorry for myself, and that can only ever be a good thing.

The snappy biting black dog

Last night, I realised something. That in itself isn’t special – I realise a lot of things at night – but I finally understood why I’ve been so reluctant to update this, and it’s a reason which makes me angry. Angry, because I allowed myself to feel scared and worried. Angry because I lost the trust I spent years building – the trust which eventually led me to feeling able to write everything down in a blog. The trust which said, ‘I don’t care what people think’.

It turns out I did care, more than I could have known. It’s not lack of time or energy, it’s not a lack of something to write about. It’s simply… I still feel broken in ways by somebody sharing this blog when they know I write anonymously. When they surely knew that the subject matter was incredibly personal and if I’d wanted it shared I’d have done it myself. Every time I have sat down with the intention to write, I find myself becoming paranoid and shutting my laptop down.

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It all comes back to paranoia. Part of me wants to shake that person; scream in their face. However, I know it’s pointless because the damage has been done and they will never, ever understand how I think and feel, and clearly have no desire to. Personally, I would never share anybody’s mental health tale, but is that just me? Has social media made it so that everyone has a right to poke and pry? I always knew there was a chance somebody would find this blog but I assumed it would be a family member or friend; somebody I knew well, who already knew about my past and would understand at least some of how I communicate and respect that. I never suspected it’d be a virtual stranger who barely knows me, somebody who shouldn’t even have an interest in what I’m doing or saying. It feels horrible; every time I sit down to type there’s a squirmy black worm wrapping itself around my words and reminding me that I’ll never be safe. Since safety is what I’ve always craved and fought for… it’s difficult. I want to ignore it because it’s none of their business what I say, but my brain just doesn’t want to accept that.

I had almost forgotten. I decided to let this blog and the hours of work and difficult words go, and move on. However, maybe I don’t want to move on. Maybe this has always helped me, and I should be doing what’s best for myself regardless of fear.

ImagePart of my need to write regardless is down to an utterly wonderful woman – M – who has been my therapist for a while now. Last week we had our last session and a relapse prevention, and part of the prevention comes down to not letting things build up and explode in panic and irrational behaviour and my way of doing that has always been to put my feelings into words. M has been encouraging me to bring back helpful things into my life and discard the useless; to believe that I’m capable of doing so. When I was first referred, things were… difficult. I had developed full-blown agoraphobia. My flat had become my prison and I only went outside to attend hospital and GP appointments. Stepping out of the front door was the most terrifying thing I could possibly do, and it’s not that I didn’t try; I did, over and over, but just didn’t seem to have the ability. Agoraphobia is a frustrating condition, because there’s absolutely no logic to it. Logically, I knew nothing bad would happen. Logically, I knew that having fellow humans see me wasn’t the end of the world. I like logic and despise anything which is entirely illogical, and so I grew to despise myself and my inability to do normal things like buy a pint of milk. M helped me see that I was reacting to an impossible situation – physically I had been forced indoors by the arthritis, and that gave my brain plenty of time to create fear which didn’t actually exist, so when I became more mobile I found myself stuck between wanting to live a normal-ish life and wanting to hide from everything which seemed so horribly unbearable. It’s a silly thing, really. The world isn’t that scary. My street certainly isn’t. Yet for the longest time I couldn’t even look out of a window without feeling sick at the thought of stepping outside.

I’ve had agoraphobia in the past, but never at this level. I always managed to cope somehow before, putting my mental blinkers on and just barrelling through life as best I can. This time… this time, I found myself leaning against the front door after S had left for work, banging my head against the glass and wanting more than anything to be able to follow him into the world, yet totally unable to. Opening the door was like throwing myself off a high cliff; my body and mind simply said ‘nope’ and shut down.

ImageSlowly, over time, things have improved. I can now go outside alone, although walking to the shop down the road is still difficult and I’ll make excuses not to. I haven’t been near public transport since last Summer. One of the main goals I currently have is to get on a bus; such a simple thing, yet I still don’t feel brave enough. M has helped me understand why I find it so difficult, but it’s still frustrating. I live close to the railway and could go anywhere if I wanted, but all that seems so far away, so impossible. I spent an hour in the garden today, and that was pushing it.

Even now, as I write this, I’m trying to censor myself despite knowing it shouldn’t matter. After all, what’s the worst that can happen – people know I have a personality disorder? It’s not as though I’ve been murdering anyone, I haven’t done anything wrong. That’s what I keep trying to tell myself, but there is always that split part of me laughing at my paranoia and pushing my buttons. I suspect some people will never understand the concept of true paranoia and unrelenting fear and just how horrible it feels; otherwise they’d leave me be.

Heck. I doubt they’re even reading this. I know that in reality I’ll have been long forgotten. If someone were, would it really matter? What are they going to learn about me – that I have a mental illness? That’s nothing special, plenty of people do.

Still. Just typing ‘I still want to self-harm every day’ scares me. I want to be honest. With myself and with the readers who have been incredibly supportive. I know some of you are still looking in, and I appreciate the comments asking if I’m okay after such a long period of silence.

I owe myself that honesty, it’s just difficult untangling it from the snappy biting black dog.

 

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.

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.

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.

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.

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.

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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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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My bed feels larger than when I was small

 

I’m tired of struggling through every day. Of pushing and pulling and forcing myself to at least seem okay. I’m tired of speaking and having the words come out jumbled before they can even leave my mouth. Of sleeping only when beyond exhaustion. Of making excuses. Of seeing the sunrise every single morning, having been awake all night. Of not being able to find a single bit of beauty in it.

Today, I broke all my personal promises and posted my feelings on Facebook. Oh, not the big stuff – that’s for here only – but I went into far more detail than I’ve ever felt comfortable with, and I’m still not comfortable with it now. I only did it because I can’t take unrealistic expectations anymore; I have never, ever been able to cope with being expected to act a certain way and, truthfully, I’m sick of pretending.

I was pulling myself out of it, with the help of antidepressants which have been proven to work for me. I was trying really goddamn hard, and I was almost there. I’d started eating normally again, and having showers. Things seemed to be on the up emotionally, even if they weren’t so great physically.

Then… just one little thing. That’s all it takes.

I don’t even know what that little thing was. All I know is I’m sitting on the sofa after leaving S in bed. I cried all day. I realised I just can’t take this. Everything. The pain. The sickness. The tiredness. Any of it.

 

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I’ve been vomiting again, and the conclusion my mother and I came to is that it’s stress. Truthfully, I accepted this explanation because the idea of facing just one more doctor is too much to bear. I’ve thought about it throughout the day though, and I realise it’s probably true; even on days when I don’t feel like a total emotional wreck, I’m still terrified of what will become of me, and it’s like a ball of pure acid in my stomach to even consider the future.

Can I even see a future for myself?

Not really.

I’m relying on those closest to me – my mother, S, and a couple of people I’ve come to call friends – to keep me afloat, because if left to my own devices I begin to sink almost instantly. I can no longer talk to Z about any of this; it became apparent a while ago that we’re probably never going to be on the same page when it comes to life.

Just like last time, the vomiting has kicked off feelings I’d rather not have; feelings of calorie counting and tape measures. Truthfully I hardly need to worry about such things since eating has become incredibly difficult with the constant nausea and risk of sudden projectile sickness, but something inside decided to worry about it anyway. I’ve lost a lot of weight without even trying over the past few months, and you’d think I’d be ecstatic but instead I almost feel cheated because I didn’t do it myself. So, yet again, I grab for control.

I don’t even believe my own lies about having control anymore. I know nothing I do gives me the slightest safety.