There is a light that never goes out

When I lived with my mother, there were often times when the only source of entertainment was to write. There are only so many cheap horror films someone can watch before they all drift into one, and only so many charity shop books you can buy before realising you’ve read pretty much every regularly-donated text. Back then, my days were entirely upside-down; sleep during the day, and lie in bed at night, typing away. It’s because of this – the ease of settling down to write in the past because the nights were impossibly long – that I’m now finding it difficult to balance my everyday life and the virtual world of my blog.

On the whole, my life isn’t much busier. Since moving in with S, I haven’t taken up any time consuming hobbies, and days rarely get so exciting that I fall into bed, exhausted. In fact much is the same; just with added domestic duties and a slightly better sense of night and day. I just find it difficult to juggle both living in a “normal” situation, and writing.

Now, after months of half-hearted posts and putting off the important stuff, I’m stuck in a situation where I have so much to write about that it has become an impossible task. I bypassed the guilt long ago – I’ve been looking after myself a little, for once – but now… I’ve somehow got to squash it all into one post because putting it off is only making the problem worse, and I know that in the long run writing about all this is good for me.

Not only that, but I somehow have to try and make some sense, which isn’t the easiest of tasks on 200mg of Tramadol. I appreciate this post may be a little… disjointed. Trust me, it’s nothing compared to how my mind currently feels.

When I posted the Letter To My Consultant a few days ago,¬† I had actually already seen him the Monday before. My mother and I travelled 25 miles by taxi to meet with the specialist who had agreed to give me a second opinion. I had expected to fight to to be taken seriously – again – but I can honestly say that he was never anything less than courteous, and I left the appointment feeling buoyed up by the simple fact of just being listened to. It’s all I needed. Someone to sit, listen, and offer advice. Once, I thought that the NHS was built around trying to help patients, but over the past few years my faith in it had slipped to the point where I didn’t even see a reason to have an NHS if they can’t achieve the most simple tasks.

Now, some faith has been restored. And all it took was for somebody to shut up for five minutes and actually listen to me.

It should never have been this hard.

Lot 40 - Alison Englefield Headings -Paranoia

I don’t yet have a diagnosis, but that no longer matters to me so much. The promise to try and control the pain is enough for now, and although Tramadol probably isn’t the smartest option for someone who fought addiction for so many years, it’s one which works, and while I’ve certainly been craving the pills, I haven’t abused them, nor do I have the real urge to. They’re important, you see. The only thing I needed to truly escape from was the physical pain, and Tramadol goes some way towards making it more bearable.

Also, S isn’t stupid. He knows of my addictions, and he knows it’s something which haunts me every day. In the past, nobody’s truly tried to take control over it, but S simply isn’t the sort of man who would let me abuse painkillers. Now we live together, it’s something I can’t really hide – the tiny pinprick pupils and staring into space are a dead giveaway – and although I know I’ll always struggle with the urge, I suspect S will never go easy on me if he finds I’ve been abusing them. I wouldn’t want him to go easy.

The consultant said that if Tramadol doesn’t work, the next step is morphine patches. Again, he listened.

So I don’t have a diagnosis, but there are a couple of conditions which are being bandied around. Rheumatoid arthritis. Psioratic arthritis. Psioratic seems more likely, based on where the pain in my fingers is and the nail loss I’ve been experiencing. Rather than just saying “well, it’s something, but we don’t know what” – which is what I’ve been hearing for years now – my consultant explained that while they may never be able to fully diagnose me because rheumatic conditions can be so complicated, they will “do their best“. In this case, that means an MRI scan, ultrasounds on my hands and feet, referral to a pain clinic, and my first full examination since I started on the journey to find out what the hell is wrong with my body. I have begged for these tests so often in the past that I assumed I would have to do the same at this appointment, but I didn’t even have to ask. For the first time, I’m being physically tested. My first set of bloods have been done. They even did a urine sample, which my local hospital has never bothered with.

urine specimen


I came away from the appointment knowing a few things; that whatever it is will “most likely be lifelong”, that I will “probably always need pain relief”, and that there are doctors out there who still do their jobs properly.

I’m okay with it being lifelong. I feel like I’ve lived a lifetime of it already, so a few more decades can’t be much harder.

Maybe now I can settle. Enjoy living here. I’ve lived with S for six months, and so much has been ruined by my health. Maybe now… I can feel okay.

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  1. Really good post. Rated and liked. I can completely relate. I find a bit of comfort knowing others out there are feeling almost exactly the same way I am. Even though I don’t know you, I feel your pain and the frustration of fighting to get a diagnosis.


    • Thank you very, very much krisdw; and thank you for the reblog! One thing I’ve learned from speaking so openly about chronic illness is that there are thousands – if not millions – of others struggling in the same ways. The frustration of getting a diagnosis is indescribable to those who haven’t experienced it themselves, and although I’m sorry that you also know what it feels like to go through all this… I’m glad there are so many of us out there, because it’s harder to feel alone that way.


  2. I am so happy to read this post, to know that someone is at last taking you seriously, and without you having to beg or demand. Congratulations on six months living with S and I hope it only gets better from here. *hugs*


    • Thank you Julie :) I admit, not having to beg or demand has been a massive weight off my shoulders, one I didn’t even realise I was carrying until it lifted. I got a letter from the hospital this morning for the ultrasound appointment, which is in three weeks; a massive improvement on waiting times at our local hospital. Well worth travelling for. Taxis into cities aren’t cheap, but I’d rather save my pennies for those journeys than waste time at our local hospital.

      Living together is still fantastic, and S has been incredibly supportive of it all. I admit to feeling guilty if the housework doesn’t always happen, but he doesn’t seem to mind. All in all, things are going pretty well *hugs right back*


  3. Half the battle is the diagnoses, the other half dealing with it, but if no one listens then figuring out the diagnoses is that much harder. It took me years to get the specialists to take me serious and then it was too late to fix some things. I am happy someone is listening to you.


    • Thank you. Sadly, I think it’s far from rare to find it nigh-on impossible to get specialists to take certain conditions and symptoms seriously, but as my appointment proved… it does happen. It’s just a shame it can be a constant uphill climb to be listened to.

      Nobody should be treated like a liar, yet it happens so often in hospitals and clinics. It never fails to baffle me why some doctors just flat-out refuse to listen, as though we can’t possibly know our bodies at all.

      Like you, it’s too late to fix some things for me. My left foot is damaged beyond any real useful repair, and I’ll always be in pain from it. I admit, I’m angry that it took so long, but… I don’t know. I was riled up and ready to sue anyone and everyone, but I’ve realised now that won’t bring the use of my foot back.

      I’m glad the specialists are taking you seriously, too. You’re right, it’s much harder to deal with these things if nobody is listening. I wish some doctors would accept that.


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