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... On a Cold and Frosty Morning

I have two more appointments at St Thomas's Hospital, Westminster, London. On 22nd October and 2nd November - for diagnostic procedures, not treatment. (The first appt was on 2nd October - what is it with my new consultant and the number 2?)

On 2nd November I am going to have another whole spine (and pelvis) MRI, imaging from my head to my thighs - ninety minutes of, "Please stop moving," / "I'm not really *moving* - I have nerve damage. I get uncontrollable muscle spasms if I stay in one position for too long, especially if there's pressure on my spine." As I said previously, the last time they did one, I literally could not get off the bench at the end because my lumbar spine and pelvis had completely seized-up.

STH is three-and-a-half to four hours away from where I live in Suffolk.

Doing that journey six times (there-and-back x three appointments) in the space of one calendar month.

Without steroids.

Fuck. Me.

I am NOT looking forward to November - damp and cold and dark days are bad enough for stiffness and pain and SAD, but counting up "bad for my back" points here, things are not looking good. If you do not see me online at all...


( 12 comments — Leave a comment )
Oct. 15th, 2015 06:14 am (UTC)
Fuck, that doesn't sound like a month of jollies. And the 22nd is only a week away. I shall be thinking of you. I have to say, the last few months have taught me a few things, and one of them is that in your shoes, I would be a wreck. I think of you very often.
Oct. 16th, 2015 02:36 am (UTC)
I think of you all the time, too. ::HUGS::

and one of them is that in your shoes, I would be a wreck.

The thing is, you don't know what can you handle until you have to do it. And I've had eleven years (and change) of living with this.

I have been a wreck: when I was first diagnosed ("You are going to be in pain for the rest of your life - but you will have a normal lifespan" was no very fun thing to hear at 26 - and I've gone back and forth more times than anyone can count on how much this not being life-limiting (early tests were for tumours, MS, MND/ALS etc) is actually a *good* thing, since my grandmothers lived into their 80s); when I finally reached the point where I could no longer keep working (I had a total mental breakdown when I lost my job and consequently my home); even now on Bad Days (TM).

You could say I *am* a wreck, since as well as the physical I have chronic Depression & General Anxiety *because* of the disability and pain. I've had Pain Management units tell me they cannot help me b/c of my mental health and Mental Health Services tell me they cannot help me because my problems all tie into my disability and they can't treat that. I'm on quite big doses of psychoactive drugs as well as the opioids.

There are so many different values of "coping" - and I'm in awe of *your* coping skills.
Oct. 15th, 2015 11:25 am (UTC)

Oh bugger, that sounds awful. I'm so sorry you're having to go through this, and yeah, November is such a damp and gloomy month, it doesn't help at all.

Sending you hugs and positive-outcome thoughts.

Oct. 16th, 2015 02:42 am (UTC)
Thank you!
Oct. 15th, 2015 01:01 pm (UTC)
Argh, I'm sorry! There's no way this isn't going to be horrible, I know. I don't understand why...well, perhaps best not to go there. If there is any chance of reading while you travel, and endure, then I'd say load up on Tony/Bruce, and maybe Pros BBs. I'll be thinking of you, and hoping that maybe, this time, knowledge has advanced enough to actually help you. *Hugs*
Oct. 16th, 2015 02:57 am (UTC)
I don't understand why...well, perhaps best not to go there.

It's a pay-off thing. Thanks to the NHS all of this,from the scans to the hospital rooms to my meds are *free* to me. No arguing with my insurance provider about cost or necessity or contributions. And when I think about it, there are a *lot* of costs. Every time I have steroid injections, that's a portable x-ray machine, an operating theatre, a Consultant (ie senior doctor), a radiographer and at least three nurses, plus the images, the drugs and the contrast with which they inject me. I shudder to think of the costs of a full-spine MRI under the US system.

But, downside, the hospital schedules your appointments and tests being done in different departments depend on when those departments have a slot.

NHS waiting lists being what they are and these tests being RE-examining a pre-existing condition, hideous month or not, I'm really lucky that everything is happening so fast. I was thinking I'd be waiting a couple of months before anything got moving.

I don't have a portable e-reader, unfortunately (I got Kindle for PC b/c that was free to download) and I don't even have a mobile phone - but I will see if I can get to Waterstones in the next week and get something to read. (Not that you can read during the boring as hell and long-ass MRI and it's so noisy that even if you bring in a CD you don't *hear* it. ::sigh::) (Enough of that. Think good thoughts, Dee. You are actually getting SEEN. This MAY help. Positive, positive, positive thinking!)

Especially as appointment *times* and when you actually get *seen* can be two very different things in my experience. There's nothing quite like getting to the hospital for 7am (after a 4 hour journey!) and then sitting around until *1 pm*. EXTRA especially on a 12 hour fast prior to appointment time. (::grumble grumble::)


::*HUGS*:: Thank you for all the good thoughts, hon. :)
Oct. 15th, 2015 01:50 pm (UTC)
Ugh. I will cross my fingers for you that it will be as good as possible.

Do you want me to mark you as excused for the GYWO October check-in since it's in between those appointment dates?
Oct. 16th, 2015 03:18 am (UTC)
Thank you, Em.

And yes, ::sigh:: - thinking about it re:GYWO I might not get online over the check-in period. So please can you mark me excused? Thank you for thinking of it! (This re-examining is all happening really fast!)

Anyone who says/thinks writer's block doesn't exist or is all about fear or is all in the mind has never tried writing with a long-term, painful and disabling health condition PLUS chronic mental health problems. Especially when all that, plus the meds equals fun side-problems with words and memory, like my dysnomia.

I had a really bad day recently (after the last trip to London) resulting in high-dose opioid meds and "word salad".

I tried to make notes on my current fic, even though I knew I couldn't *write*, but one of them reads: "Thank for listening to Tony and slowly letting Tony filled by over-teacher: the Edward King Stone, made me more kitchen." I have NO idea what I meant by that, and I'm trying really hard to laugh at it rather than being SCARED SHITLESS.

It is written in fountain pen ink, unblotted or smeared and my handwriting is perfectly normal - but apparently words and ideas were not co-operating that day. There's nothing like the various forms of productive aphasia to make you really realise that you don't really *think* in English, unless you are effectively talking to yourself.

So many people throw up comparisons like "Surgeon's Block" or "Brick-Layer's Block" which people "cannot" have because they have to do their jobs - but if the surgeon or the brick-layer cannot *stand* that day because of her bad back, she'd have to call in sick. And if the sureon/brick-layer could not use words in a way that made sense... ::sigh:: (Some writers' guides/sites/"help" are SO freaking ablist it makes me quite MAD.)
Oct. 15th, 2015 02:07 pm (UTC)
I'm so sorry. Thinking good thoughts for you.
Oct. 16th, 2015 03:20 am (UTC)
Thank you, babe. And right back at you. ::HUGS::
Oct. 15th, 2015 02:22 pm (UTC)
*hugs* Gah, not a fun prospect at all. Imaging is at best tedious, and at worst, well, a lot worse (and imaging departments are always freezing cold!) I will be thinking of you on those dates and hoping that it is all as good as it possibly can be. You are in my thoughts ♥
Oct. 16th, 2015 03:32 am (UTC)
::HUGS:: Thank you

It's SO comforting in its way to know that you (and others) know so much of what I'm going through and complaining about (even if I also wish no one *had* to know, you know?).

The last time I had to have an MRI, the department had moved but they had not updated the form letters. So we went to the place on the map - to discover a locked down and disused building. It was a 6.30pm appointment - could we find *anyone* to ask for help in the outpatients buildings? We could not. We had to go to A&E and queue at the desk and say, "Look, we have this letter for this appointment, but there was NOTHING there. Can you help?" And a very nice nurse took us on a route-march (reason #2 why I prefer to go to hospital in a wheelchair rather than struggle with crutches - *EVERY* relevant department seems to be as far from the lifts and/or entrances as humanly possible, or in another building half-a-mile away or something!)

We FINALLY got to the department (late, obviously, after our adventures), for the receptionist to say, "Oh. We moved over a month ago. Didn't they update the letters? Maybe that explains why we've had so many no-shows."

Yes. Yes, it probably does. ::wide-eyes::

THIS appt letter directs me to the "Temporary" scans department. HOW temporary? WHEN temporary? Bit worrying, given past experiences. I plan on arriving an hour early. Just in case.
( 12 comments — Leave a comment )


Dee Natsuko

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