Letter from the North

Sheffield is a long way, pain is NOT character building and never forget poo – 01-Sep-2018

Finished the assessment (see Thursday)

Sat 01-Sep-2018  

Teresa is desperate to get the work in the annexe finished (we missed the summer ’17 holiday season and now summer ’18 so she wants to be sure we’re ready to fly in the new year) and as she’s mostly finished her stuff, it’s all waiting on me. So, I (she) decided that this weekend I would try and push to make progress, carefully managing my energy at the same time. 

I woke Teresa at 7:30am – normally at a weekend I would NOT be doing that, she needs the lie in, but mornings are my best time. 

Into the annexe we went and I cut a “notch” in the shelves either side of the window and knocked out a lot of plaster and mortar on the righthand side to get the new support post (for the blind) in place, screwed it to the existing timber on the plasterboard wall above the shelf, and it looks solid. I did the same on the other side, but only needed to remove the plaster. Both uprights required a notch taking out of the bottom to allow for the irregularities of Cornish walls and their rather random relationship to all things square and/or vertical! 

After that I was shattered so we stopped for a break and had lunch. 

Afternoon and time for another go. We checked whether the blind would fit the gap – not quite, needs ¼” taking off. So, angle grinder (with thin blade) to cut the metal trunking and a fine-tooth saw to cut the slats. Tried fitting and looked marginal, but I was shattered again so no more today. 

time for a late afternoon nap 

We had an early tea because Teresa was off to a performance at The Acorn in Penzance so we had a second portion of the Magnificent Moussaka that we had yesterday (Friday). 

Teresa headed off and by 7pm there were rumbles in the bottom department and oh yes diarrhoea is in the building; 20 minutes later there’s an even louder rumble and a severe Barney (see earlier blog for definition, because you don’t want me to explain it again, you really don’t) is in progress. Feel awful, like my insides have been hoovered out. Took an Imodium and lay very carefully in bed 

Sun 02-Sep-2018  

Well, nothing happening in the bottom department, probably because nothing in my digestive system left to come out, so not worrying. 

Again, I woke Teresa up at 7:30am. My whole shoulder area is very sore but not impossible and there’s no sharp pain. I feel awful but it’s worth a final push. So, in we go, put up the mounting brackets and tried the blind. Metal “just” ok, the blinds slats not. Decided to cut the wooden slats by ¼” either side to ensure it won’t catch going up and down. 

Bloody hard work as it needed gentle manual sawing and that is both hard on my shoulder and physically exhausting, so a lot of rests as I cut through and it was eventually done (taking about an hour for what is really a 10 minute job). After that we hung the blind – yeehaw, it’s up and working. Time for a long rest. 

Had lunch and then a quick trip into annexe to use mortar and “rubble” to fill the gaping hole I left clearing space for the righthand side upright, didn’t take long. Will need plastering to make good but no problem. 

Afternoon nap time! 

Agreed with Teresa to avoid the moussaka today in case that’s what triggered my digestive system upheaval yesterday. Really annoying as it was the best moussaka ever… 

Instead I had a sausage sandwich and some of Teresa’s lovely apple and blackberry crumble. Teresa skipped the main course and went straight for a VERY large bowl of crumble plus a humungous quantity of Birds custard. She spent the rest of the evening complaining that she felt ‘pogged, but she still had a big smile on her face :-). For me it was evaporated milk with the crumble. For both of us, our choices reflect memories and experiences from our childhoods. 

Bottom department still quiet, though I worry about that fruit. 

Mon 03-Sep-2018  

Well, a normal bottom visit to the loo, something which is often followed by explosions once the “bung” is released, so fingers crossed. 

To work in my office at home 

Tue 04-Sep-2018  

In the office in Penryn, very tired, probably the result of the weekend. 

Loaded the buggy using the new ramps myself when I got home as Teresa was out.

I didn’t have my afternoon nap when I got home, despite feeling incredibly tired. We are heading off to Sheffield early in the morning and I wanted to get as good a night’s sleep as I could. 

Not sure if I have explained why we were off to Sheffield, so apologies if you remember, I’m afraid I don’t. 

The purpose of the trip is for me to get a “Learning difficulties” assessment by an educational psychologist. In the old days this would have just been for Dyslexia, but nowadays (as we found out) it’s a much broader assessment. Because I am starting an MSc on Autism studies in November with Sheffield Hallam University, and had asked them to take my brain into account, they needed an “official diagnosis” and were willing to pay for it if I would go to Sheffield. So, having not seen Mum (who is over the Pennines in Doncaster, and in end stage Alzheimer’s) for years, I thought OK, two birds with one hand (Teresa tells me this should be ‘stone’, but I like my version, tomorrow it will be a different version, …). Overall it was a 400-mile journey each way! 

So with the journey looming, I managed to stay awake until 7:30pm and after that I did sort of sleep, but in the end it was just as broken a night as normal so I probably should have had the extra hour or so in the afternoon as well. 

Wed 05-Sep-2018  

I was up at 4:30am for a 6pm departure. Hmmm, it all took a bit longer than that and it was more like 6:15 when we left 

We had the usual stop at Cornwall Services for me to take my cancer drugs, but otherwise just a cold drink, so no delay. Of course, it’s not that we get the cancer drugs there, just that after breakfast and getting ready, 2 hours have passed by the time of Cornwall services and so a good time to take the drugs I have with me. But then you all knew that didn’t you? Probably just me that found the original sentence misleading? 

On to Taunton Dean services where I made a cup of tea from my Thermos and Teresa had a coffee from her thermos and I got to eat something – a roll from Smiths that I was sure I had enjoyed last time we were here, but this time it was rubbish, so maybe I had picked it up at Cornwall services last time, not sure. 

Onwards to Gloucester services, not sure what happened here, but Teresa likes it. 

By now we’ve had a lot of discussion about the possibility of going to Bromyard (https://www.bromyardfolkfestival.co.uk/) Folk Festival on the way home – see the folk festival blog for more (when it’s released). 

Still going, it’s a long old trip this.  At the M42 around Birmingham I knew we were heading for the M1 North and so decided that we wanted the M69 turning off the M6 and ignored the Satnav. Almost at the M69 and I saw the Satnav taking us off and wanting us to turn around. At the time we were in very busy and slow roadworks and I was close to panic, so I did what the satnav said, got a map up on my phone, and realised she wanted us to use the M42 North of the M6 and we should never have turned off onto the M6 in the first place. Why it was faster to go back through really heavy roadworks to the M42 and not just continue I don’t know, but we did, and things eased off. Surprisingly we avoided a row, mostly I think because Teresa went silent and didn’t try (very much) to help and that let me sort myself out. We make progress 🙂 

Stopped at the first services we reached on the M1 (Trowell) pretty rubbish but had a cup of tea/coffee and something to eat and then the final push to Doncaster to see my mum in the nursing home. Not seen her for a few years, back when the Alzheimer’s was very mild. She’s now immobile and whilst she appeared to recognise me as someone she knew, I’m pretty sure she didn’t know WHO I was. 

Anyway, we spent 20 minutes with her and then on to see (and stay) with my sister (also in Doncaster). Nice to see her, she works nights and left her dogs in the house with us. Apparently they  are quiet for her when she sleeps, but they weren’t for us and with one dog in the sitting room and two in her room (next to ours) they wound each other up for a lot of the night, indeed Teresa and I do quite a double act impersonation (ask us, next time you see us 😊 ) so, we did not have the best of nights 

Thu 06-Sep-2018  

The next morning, after a chat with my sister, it was off to Sheffield for the assessment, the journey was straightforward, albeit slow in places, and we were able to park with our University supplied permit.  

While Teresa checked out where we were supposed to go, I used the ramps to unload the lawnmower (an act that, in hindsight, may have contributed to my shoulder pain two days later). Although I had loaded it myself on Tuesday afternoon after getting home from the office without problem, this time it “grounded” as I was getting it out (and back in). I suspect because the slope of the outside ground in Sheffield increased the angle of the ramp a tad too much. I think an extra bit of ply on the floor of Angelique, just to raise the wheels for a bit longer, will do the job. 

We tried to find somewhere for coffee but despite “help” we never did (term hadn’t started so the whole place was a bit Marie Celeste) so just had water and waited.  

The assessment was as traumatic as I expected from my memory of the last Dyslexic assessment I had. The Psychologist was brilliant, but the very nature of the tests strain what I can manage. Still, at least they let Teresa sit in with me and she was able to make sure nothing was missed out or misconstrued. 

This time, the results were clearer as they seemed to be more willing and able to view overall diversity and not just the basics of things like spelling. It turns out that I am quite bright, have got good coping strategies and am good at solving problems logically (well what a surprise, I am a mathematician!) but that I have processing issues:  no surprises there either. All of which means I should get some help in the form of time and “understanding”, so an exhausting but worthwhile trip 

The journey home was tough. It was chucking it down with rain and as we had left around 1:15pm, we were never going to be home much before midnight if I didn’t need a sleep on the way! 

So, down the M1 we went, traffic awful, awful rain, so much dangerous driving, mainly by HGVs. We stuck to the inside lane at 40-50MPH and I was quite happy with that (these days in Angelique, 50 is my usual anyway!) 

we stopped at Tibshelf services – better than Trowell on the way up – for a food and drink break. For me a Cappuccino coffee with an extra shot. I don’t normally need coffee during the day but after our bad night and then the gruelling assessment, I knew I needed the “kick” 

Down the M42 and once we were south of the M6 it was stationary and crawling till we were going West on the M42 (underneath Birmingham) and on our way to the M5. 

The traffic had now eased and so did the weather as we dove down to Gloucester South. 

Bizarrely, Gloucester South Services have erected two disabled porta loos outside. We decided they might be for night-time use as these services are not 24 hour. When we went in we found half a dozen family loos and two disabled ones, both seemingly engaged, so I used a family room – since they have a habit of using the disabled even when it doesn’t have baby changing facilities and somewhere else does. 

After that I felt the need for a nap and since Gloucester is 3 hours free parking (most services are 2 hours) it was a good place. 

In the end I got an hour and a half of rest with some napping. It was then back in for a pie and another Cappuccino plus extra shot and yup, the same disabled loos were engaged again (i.e. both on my way in and on my way out – yes, of course I checked!) so maybe the porta loos outside were there for some bizarre reason that they had no notices about???? 

Anyway, onwards, knowing we weren’t going to get home before 1am now and that Cornwall Services closes at 11pm, we stopped at Exeter for a final loo and another strong coffee. They have changed the layout of Exeter services since we were last there and added a new layer on the side, but once you get past the extra layer, the rest is little different, especially in the loo department with one disabled that is just as scruffy as it always was! 

Trouble is, you have one hell of a walk through the new bit to reach the old bit where the loos are. More than I wanted but other than getting out the lawnmower, I had no choice other than a very slow walk. 

Final push and we got home around 1am, very tired, and I crashed out at 1:15am and that was that. 

Fri 07-Sep-2018  

Quick dash to physiotherapist at 8:30am (I hadn’t bothered to postpone as I hoped to be back sooner (idiot Bean, do the arithmetic as they say 🙂 ) 

Her verdict was that I have sufficient strength and mobility to be “functional” and so nothing more she can do, what’s left (the movement I can’t do and the pain) are “my problem” NOT said in a nasty way at all, just being realistic, I agreed and so that’s me done, almost 11 months on from the original accident. 

For the rest of the day I did absolutely NOTHING apart from repeated trips to the loo for the “usual” 🙁 needing Loperamide and Imodium instants before tea and before bedtime to just hold onto a little nutrition and fluid and sense of normality, because “exciting” poo IS the new normal, something that would have been distressing and worrying is now so “every day” (and it is every day and multiple times a day) that it’s hardly worth mentioning, is it? Obviously, I think it is 🙂  

Postscript 

Pain, I don’t go on about it, but the reality is that my shoulder is sore all the time, hurts often and is agony sometimes (a few days a month on average). 

My dodgy hip continues to hurt when it’s not been moved for a few minutes (no chance of fixing because I can’t have surgery without stopping the cancer drugs for 3 months) 

My coccyx is never pain free, sore usually, hurts often and agony too many times. I use extra padded cushions with a cut-out on the sofa, in my office (home and Penryn), in the car and on the mobility scooter and that reduces it to manageable in the sense I REALLY want to use pain killers but don’t because I have such a deep aversion to getting addicted – even Paracetamol which is not addictive, but if you take it all the time then what do you take if you need more? 

Yet there are still times with my shoulder and with my coccyx when pain killers are unavoidable, probably every week to 10 days for a day to 3 days at the time. 

Can you see any of this? Nope. Does it add to the fatigue? Yup, just as the diarrhoea does. Can you see when all three are bad? Nope. Who knows? Only Teresa – see my blog a couple of weeks ago when I ranted on about visibility and open communication! 

I go on about this stuff here because I am trying to help people see what normal really is for me, out and about I try not to show it and I have to remember that when I see any form of specialist I need to make sure they see my actual problems and not my masked ones, because otherwise they have no way of knowing. Frustrating isn’t it? Those who moan loudest get the most attention, those who” manage” get the least, even though they are often far worse off. 

Oh well, I could really start ranting all over again, but no point. We all (should) understand that problem, it is endemic in life. I just try to remember to moan and talk about my worst days not my best when being “assessed”, even though it really grates on me to do so. 

The Bean, Pendeen, 15-Sep-2018 

 

 

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