Mental Redhead

Radio silence has been caused by GP listening to my call for pain meds & doubling my dose of gabapentin, adding tramadol 4 times a day and nefopam 3 times a day. I have been a zombie. Weaning myself down to a more manageable level of tramadol (to PRN level) so I can function more effectively.

Thanks 😊

In a somewhat ironic twist of fate I've had to change my in person GP appointment to discuss more effective pain relief to a phone call as I'm in so much pain I can't walk to the surgery. Let's see what he fobs me off with this time.

Got back home last night. Had an amazingly friendly & funny conductor on the train back from Gatwick who made everyone laugh. Got to unpack & do my washing. Just had a shop delivered so at least I have food now. It's grey & overcast. Definitely missing the sun & the warmth, it did my joints good.

Made it to Madrid. Gatwick was really busy & anxiety provoking but I was very glad to have booked special assistance. Have a picture of the Bear and the Strawberry Tree which is the symbol of Madrid. It's warm & sunny which is lovely. Doing culture, shopping & people watching in cafés.

Thanks. I'm a bit daunted by travelling alone after this year & being in a foreign country but then I've booked special assistance at the airports. Plus I have PRN meds, a guidebook and I can speak basic Spanish so I think I'll be ok. Just the worry gremlins surfacing.

Sorry for radio silence but I've been adjusting to no out of hours support & have been at my dad's for a week (in which he called me a "nasty piece of work" frequently). Anyway I'm quite excited bc I'm off to Madrid on Monday which is a trip I thought I'd have to cancel when I was in hospital.

Justification was that when they rang I always seemed alright and not in distress, ditto when they delivered my meds & that I never used the out of hours line. Thing is I'm doing kinda ok at the moment and was still getting used to the team. Can be referred if key worker et. al. think I need it.

I don't know how I feel really. Pleased that they think I'm doing well enough to not need enhanced support but scared that I'll slip back to unwell without it because I really struggle at weekends, although am going back to volunteering at the shop on Saturdays from next month so that may help.

They "reviewed" me & noted that I never seemed distressed or on "need" of their phone calls when they rang me. Also they said it could be reinstated if my support worker, social worker & I thought it was necessary (but we all know that'll be a lengthy process).

Adult social care have made the decision to remove the enhanced support they've been providing. This means no more phone calls, no access to an out of hours helpline and I'm back to administering my own meds (this bit I'm fine with) and they made this decision on a Friday morning. Great planning.

I have to do the RNLI newsletter and send it out by the beginning of October (leaving it to the last minute as usual) and I'm busy tmrw, Thursday, Friday & Saturday. Sunday I'm going up to my dad's so I'm hoping I can drop it into the computer shop on Monday & it's a quick fix. Never rains eh? /2

My key worker and I have a meeting at 10am with adult social care about the enhanced support they've been providing and to review it. I knew this was coming, they said they'd review it after a month post discharge but now that date has arrived. Also my laptop has stopped working which is great as /1

My car passed its MOT but the service cost me £500 that I had to put on my credit card which isn't ideal. The good news is that I survived 2 nights at my dad's which was awkward given I hadn't seen him since March and I'm not ashamed to say I was glad to get home.

Just dropped my car off for it's MOT & service. Turns out my service plan has expired so that's a lot of money I can barely afford (thank goodness for credit cards). I seriously hope they don't find anything wrong with it. I don't think they will but there's always that fear & anxiety.

Finally got back to sleep at 5am. Then was woken up for my meds at 8am. Just getting a bit of a nap to be woken up by a phone call from my dad who was very grumpy & put me in a bad mood. Now I'm in a crap mood, tired & unable to nap as I'm wide awake with zero energy to do anything constructive.

Urgh why is 1am in the morning *the* worst time to wake up? Thanks to my housemate for coming back in, slamming his door & then thumping on the wall between his room and mine. Now nearly 2am & no sign of sleep. Still at least I have nothing on tmrw so I can chill, if my brain allows it.

I doubt the appt will be soon due to NHS waiting lists but hopefully it'll be helpful. I'm glad she listened as well as I was trying to advocate for myself (key worker couldn't make it) but she took on board everything I said & mind read everything I didn't say.

Hair cut in about 90 minutes (I'm having some highlights too as a treat for having such a bad year) and although I'm really looking forward to having decent hair again my anxiety has gone into overdrive at having to leave the house. It's so bad I've even thought about cancelling. Anxiety sucks.

Rheumatology went well yesterday. Biologics nurse accepted that my current biologics aren't working for me so need a change but apparently that can only be decided by the medics so I hope they agree with her. Also being referred to podiatry for the arthritis in my foot so hopefully that'll help.

Try not to be too hard on yourself 🫂

I'm only 2 weeks (ish) post S3 discharge & I completely understand where you're coming from. From my previous experience it takes a period of time to readjust, both mentally & physically. Baby steps are helping me. It's great you can read & go out. I'm still finding leaving the house overwhelming.

Got a phone call from the hospital. They have a cancellation to see rheumatology today at 4pm (my appt wasn't until Nov). I have accepted but now realise that means getting dressed, brushing my teeth & dry shampooing the hell out of my hair (no spoons for washing). It's hard being chronically ill.

I'm going up to my dad's on Monday. It's an enforced visit as my car needs servicing & I have a service agreement with the manufacturer & the nearest dealership is in the next town to my dad's. I haven't seen him since March as he never came to visit me in hospital so we'll see how it goes.

That's a relief

So the costochrodritis pain is easing slightly to be added to with a migraine. I wish my body would just give me a little bit of a break at times (well most of the time).

Hope you feel better today 💜

I'm sorry. Sending you restful vibes ✨

That's really odd as my car insurance went down this year. Driving 20 years with 17 years NCD (only 17 as that's how long I've had my own insurance). Like you no points or endorsements or claims. Hope you find a reasonable deal.