A Funny Thing Happened On My Way Downstairs

August 22, 2012 § 5 Comments

I was diagnosed with Dermatomyositis in late May of 2012 and went into hospital within a couple of days for the myriad of tests to check that cancer wasn’t the underlying cause…which thankfully it’s not in my case. I’ll do more on the whole diagnosis, test regime and ultimate prognosis in later posts. This post is to tell you about my awful day yesterday, to get it out of my system as a giant SCREAMMMMMMMM.

Ive been tapering the steroid I’m on (prednisolone) while upping the dose of the chemodrug (methotrexate). Before the treatment I would get awful knee pain and pains in my head (well scalp not head) as well as various other ailments. The ‘scalp’ pains would radiate up the back of my head, into the top of the head – these were awful because it meant I couldn’t move my head in certain positions. These abated over the course of the treatment, but now suddenly they’re back and with avengeance, along with the knee pain and the rash, just starting on my face again.

Yesterday, I went to hospital to discuss these re-occurence’s. The doctor suggested I go back up to 30mg of prednisolone for a while to see if it really is the tapering, or if the methotrexate isn’t being effective. I’m doing that. But…

When I got back from hospital I was extremely poorly – it wasn’t helped by getting lost in the hospital and having to drag my gammy leg around – I felt like I was trapped in some awful Stephen King horror story, I kept expecting to end up in some macabre operating theatre scene. I went to bed and when I woke up I had the most horrific scalp pain, its very hard to describe in words, but I understand he phrase ‘blinding headache’ now, because I couldn’t actually see properly. I’ve had migraines before, but this was something else. I managed to get to the top of the stairs, but didn’t have the strength to walk down them. Now another unfortunate symptom is that my voice is all squeaky – matches my nice big round steroid induced moon face – I look and now sound like, a little pink piggy. So I tried to shout to my partner to help me but he couldn’t hear me, I shouted and shouted, or rather squeaked and squeaked. I ended up breaking down and cried and cried.

I cried for the loss of my health

I cried with the pain in my scalp

I cried for me and I felt as sorry for myself as a person could ever feel

Steve eventually heard me and came to my rescue.

But yesterday I realised just how sick I really am and I don’t like it and I so badly want to be better.

This time next year, I will go to the Musee D-Orsay and I will walk around the whole of the museum and I’ll eat cake and drink coffee with caffeine in it.

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§ 5 Responses to A Funny Thing Happened On My Way Downstairs

  • Brenda newberry says:

    Thank you for candid thoughts and honesty about this darn disease.

  • Malcolm says:

    That must have been one of the loneliest moments of your life.

    How aweful.

    You have incredible strength!

    • susiemorrow says:

      I think if I was living alone it certainly would’ve been, thank god for Steve. I really do not know how people who do live alone cope, my admiration goes out to them.

  • Humberto says:

    I really believe this amazing post , “A Funny Thing Happened
    On My Way Downstairs | stonesintheroadblog” T I S fairly engaging plus the
    blog post was indeed a fantastic read. Regards,Samuel

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