I’ve now been in full-on headless-chicken mode for three days, because of this Stanmore appointment. Which is to say, I’ve stopped running around purposelessly, and I’m sitting completely still, slowly decomposing.
Itinerary so far:
Arrive at local railway station at 10.45 to ensure that I meet Passenger Assistance and have time for a bucket of coffee.
Get on train at 11.15.
Exit train at King’s Cross at about 13.30.
Get on Metropolitan line.
If feeling well, take Metropolitan Line to Wembley Park, and change to Jubilee. (Faster trains)
If feeling ill, take Metropolitan Line to Finchley Road, and change to Jubilee. (Shorter walk between platforms)
Continue Jubilee line to Stanmore terminus, arriving at around 14.30
Appointment at Stanmore is at 15.30, giving one hour to get between the two. Am booked in with patient transport, so that should be all right. – Journey is about 1.5 miles.
[Insert whatever the hell Stanmore want to do to me here].
Get back on Jubilee Line at Stanmore at absolute latest at 18.45.
If running late, change at Wembley Park, otherwise change at Finchley Road.
Metropolitan line back to KGX.
On northbound train at 20.05
Arrive at home station at 22.30
Hope for lift home, failing that, get a taxi.
Crash into bed by about midnight, sleep it off, try to wake up in time to place my vote in the local council election the day after.
Trying to think what to tell the Stanmore doctors;
-My mobility is still reducing, basically because my number of luxations, and thus pain and fatigue is increasing.
-My swimming has dropped from 5 nights a week to 1 night a week, entirely due to the local pool being inaccessible.
-My pain is constant and disrupting my life, and my GP seems to see this as a “compromise”, because he believes that a “young person” shouldn’t be on “strong medication”. I believe that I should have sufficient medication to not be in pain all the time, because that will let me do more things, including stuff to get me better.
-Pain clinic knows that I cut for pain relief. Pain clinic prefers this to me taking more licenced pain medication.
-The number of luxations in my shoulders, ribs, and especially clavicles has increased since 2014, and nobody is doing anything about it.
-The local hospital trust refuses to give regular physio, directly contradicting the reccommendations of UCLH.
-Pain under right scapula started in winter 2014, had single physio appointment for it in May 2015, and was told that it was too complicated and that there was no point in me having local physio at all ever, so I couldn’t have any more. given Axsain for it in March 2016.
-Pain in spine is still probably just compressed discs (L3/4/5) and a trapped nerve, found via MRI in March 2015. It’s severe and limits my activity though, since after being upright for long, the pain is so bad the next day that I can’t even stand up.
-Sleep cycle is completely out-of-control, resulting in some days where I wake up and can’t get back to sleep at 5am, and some days where I don’t go to bed until morning. Also, can’t wake up with alarms, shaking, etc, unless at the appropriate point in the cycle.
-Migraines are basically under control with Zomig.
-Mental health is, honestly, better than it has been for a while, overall, with occasional plunges into suicidal and bad, but I recognise them for what they are.
-Having a bike is getting me more active, or at least is letting me get to my swims.
-Have been managing my POTS with salt and the movement recommended by UCLH, but still get occasional wobbliness and fainting, especially in hot weather. Carsickness may be related.
Current medications list:
Lansoprazole 30mg, once per day
MST slow-release morphine 10mg, twice per day
Diclofenac sodium 75mg, twice per day
Diazepam 2mg, prn (8 per month) – Use all, have painful spasms which go unmedicated in latter half of month
Oramorph morphine syrup, prn (400ml per month) – Tightly rationed, probably need more
Zolmitriptan 5mg nasal spray, prn (6 per month) – About the right amount
Laxido (polyethylene glycol), prn (30 per month) – Use less ~15 per month
Glycerin suppositories, prn (24 per month) – Use less ~8 per month
Questions for Stanmore;
Haven’t really decided on any yet. Need to think of something, other than just “What the hell do I do next?”
Possibly “Can you or my rheumatologist take over my pain management, rather than my GP trying to do it?”
…I’m nervous. I’m nervous and in 24 hours I will be halfway to London. And I really don’t want to go.