Week 58 Update
Sorry it's a bit late this week. I had another ranty post all written and ready to go yesterday… but you don't want to read one of those every week. So I'll save it for the next time someone parks in a disabled spot without a Blue Badge or I find a broom cupboard masquerading as a disabled toilet.
So, probably next week then…
Instead, I thought I'd talk a little more about my symptoms.
I’ve certainly talked before about some of the weirder, lesser known and understood, effects associated with Guillain Barré Syndrome but the odd thing is, I'm not sure I've gone into the more common ones. You know, the ones that come out on top when you Google “GBS Symptoms”.
I've started to see how frustrating it can be when people start questioning the symptoms of, frankly, any chronic condition when the simple answer is… because those are the symptoms you get with that condition!
I do wonder how many times someone with, say, M.E. gets asked something along the lines of “How come you’re so tired? You've had a good night's sleep.”
To which the correct answer is “Because I have M.E.”
Or someone with crippling spinal arthritis gets “You can't be sore all the time, surely?”
To which the only possible response is “Yes, I am.”
“And don't call me Shirley.”
I think my favourite one was, while I was lying paralysed in a hospital bed, unable to use a zimmer due to my dislocated shoulder, the Nursing Auxiliary who asked “Can’t you at least walk to the toilet?”
So, to let you understand, the top five GBS symptoms when you Google them are…
Muscle weakness and paralysis
Numbness and paraesthesia
Severe neuropathic pain
Chronic fatigue
Loss of balance and coordination
And my argument is this. Those are the long-term symptoms of GBS. Full stop, end of story. I shouldn't have to justify them (least of all to arsey up-themselves ward staff who couldn't be bothered listening to handover).
I mean, I could. I could give them a full rundown of the neurophysiological reasons behind each one but my argument is, I shouldn't have to. Those are my symptoms, amongst many others. Just accept that that is the case.
Or at least do a little research before challenging me like a Mumsnet reader at Customer Service*…
Otherwise, it’s just ableism in a different hat.
And yes, before you ask, that is nowhere near the level of rant that you almost got…
Anyway, it has to be said that pain has been particularly on my mind this week.
As you may remember, I've been on a hoor of pain medication for the last year, the level of which would make any reasonable racehorse believe in unicorns.
Let’s just say that, when I was a nurse, a 300mg dose of Gabapentin was the norm, anything more would cause me to check the notes or ring pharmacy.
I’m on 600mg.
Along with some background morphine and what's known as “breakthrough” oramorph, a morphine syrup that I can take if I get a bout of pain which breaks through the shield of the regular analgesia… hence the name.
For various reasons, although primarily down to the fact that the one thing that NHS England does better than NHS Scotland is electronic prescribing, I ran out of oramorph last week and spent the weekend in not a little amount of agony.
If you've ever had sciatica or shingles, or even just bumped your funny bone, you know what neuropathic pain feels like. It’s not actually that funny.
Even when my pain levels are settled, there’s still a background level of pain which is my new constant companion. And just because I seem to be coping with it, that’s purely down to acceptance rather than any sort of actual respite.
What do you expect when my nerves have been literally shredded by my own immune system?
So, if I've learned one thing this week it’s this.
Don't run out of oramorph.
On a happier note, we had a lovely Father's Day lunch last weekend at the Ben Nevis Inn, a great restaurant with surprisingly good wheelchair accessibility, considering it’s basically a renovated barn… so a shout out to them.
* I refuse to sully the good name beginning with K which I actually associate with some of the nicest people I know.