pain clinic, work

Started the morning yesterday rather better than the past two days, but not back to normal. Review meeting at the Pain Clinic this morning – I think it was much the worst I’ve scored myself on the “how do you feel today ” sheet!. I seem to be getting as much benefit from the unit as can be expected – which is gain in mobility, giving me the option of doing more before I relapse into a bad state, but not really all that much difference in the maximum pain level. The next stage – if I’m interested – would be injections (epidural or intramuscular). Given as I really hate injections, and given my body’s propensity to react to many drugs with a wide range of weird side-effects,, I’m not keen to go this route at the moment.

We also discussed the headache and slightly migrainous feeling I get if I use the TENS unit to the max for a day or two. She has suggest that I try turning the pulse width down from the normal setting of 180 to around 150, and if necessary I could go as low as 100. I’ll try this next time it becomes a problem. No further TENS review meetings are needed. So I have left it that I am OK for the time being in the fairly warm summer weather, but that if Autumn storms (predicted to be bad this year) cause the trouble that I’m half-expecting, I will ring them to arrange a further meeting with the consultant (Dr Evans), with a view to his considering injections. At the moment though, I’m generally very grateful to be as good as I (on average) usually am. The past two days have been an unwelcome reminder of how I was feeling throughout most of last autumn!

Got home to find an e-mail from Angela Servias. Apparently, I was expected at work Occupational Health Unit yesterday for a meeting with the doctor! I tried to call Angela, but she was out so I e-mailed her to explain. Caroline Ward mailed me back to offer an appointment on 5th September – oh well.

I spent a couple of hours lying on the lawn in hot sunshine – the pump I bought a couple of weeks ago means that I could do so on an airbed!! Yay! It is a great improvement to be able to sunbathe flat on my back (jeans on, but topless).

Phone call from Steve Barton (Unison) around 1600h. I brought him up to date on the current sate of play, and explained my worries about pay etc. Further exchanges of e-mail pm with OHU and Angela. So, if there is a cancellation before 5th Sept I may be offered a short-notice appointment, otherwise 5th Sept stands. Checked the doormat – the letter inviting me to OHU yesterday (15th) has now arrived. Postmarked 9th – ie Tues of last week.

Other exciting arrivals include my Maestro (was Switch) card. I have the PIN for it. This means that I can now order really heavy/bulky shopping on-line for delivery – catfood, flour, and suchlike. I will have to keep a careful eye on how much I use it – especially given uncertainty about getting paid next month. However, there might be a saving on being able to buy larger sizes, or in bulk a bit … to offset the delivery charges. Ocado (Waitrose) is free over £75, min order £25; Tesco has a £5 delivery charge for 2-hour (apparently unreliable) slots. I will have to think about this a bit. Probably best to start a spreadsheet for the regular heavy stuff, & keep notes on what I use how often. Ain’t life complicated sometimes!

Evening spent watering: even though we had dampness and showers on Sat-Mon, the ground is very dry. A run round the assorted pots with the hose, then a good hour on the top bed, and an hour with the sprinkler on the bottom of the lawn / little bed / twisted cherry area.

two very rough days

warning: self-pity section!

I continued to have constant pain in my back, and intermittent intense referred pain from my right testicle, all day Sunday, and most of Monday. Mobility actually not too bad in terms of bending forwards/backwards, but excruciatingly painful if I attempt any kind of twisting of sideways motion. As quite often happens if this kind of pain sets in, I got “bitten by the black dog” on Sunday afternoon, and have been in a state of serious depresso since then. The usual bursting into tears for no reason, total loss of appetite, and a mild headache with slightly migrainous visual problems.

Maximum use of TENS unit, but I’ve had to cut back on that because it’s reached the point of shifting muscle tenseness up to my shoulders… which makes the headache /eyes thing worse. I did manage a walk to PC World to pick up some blank DVD’s: thought the fresh air might do me good, and my mobility is actually OK, but it didn’t really help. Back via Tesco to pick up supper and catfood.

Nearly 2300h on Monday as I write this, and I’m really not feeling much better yet, despite max doses of co-codamol, regular mild use of TENS unit, and re-starting St John’s wort. Hope that a bath (and with a bit of luck going to sleep earlier than the six am that has been the case for the last two days) will mean I start off tomorrow a bit better: I’ve got to be in Hammersmith for 1015 for a TENS review. The thought of an hour on the tube in my present condition is actually almost unbearable.

This is what I SO FUCKING HATE about my disability. I can cope with having limited mobility, think I’ve adjusted pretty OK to feeling that in some ways I’m old before my time… have a reasonable grip on the frustrations of having to get others to do things (DIY etc) that in some sense I still feel I “ought” to be able to do for myself, and accepting that there will just be days when i can’t hoover, or empty the dishwasher / washing machine, or whatever. But when I have more than a few hours of unremitting intense pain and the weather is damp enough for it not to be localised to my lower back, the black dog bites.

To be reduced to bursting into tears for no reason, to feel totally yucky, emotionally fragile, and physically in pain (even if mobility is not particularly poor) is the pits. I know it will pass in two or three days. I know the frequency with which it happens is a LOT less than it was (down to about once every five or six weeks or less on average, from about once a fortnight ). And I certainly generally don’t feel that life is not worth living – there has been so much positive in my life this year. But Oh God it is so hard to deal with sometimes … all I can do is curl up and whimper and wait for it to go away!

Positive learning outcome: DO NOT STAY ON ANY BUS, TRAIN, ETC that I can feel doing me damage. It is SO not worth it, for almost any reason. So I guess I’m gonna have to get up especially early tomorrow, so that I have plenty of time to catch Silverlink to Gunnersbury then district line back to Hammersmith … and to pass up the odd train if it starts bouncing around for any reason.

Mark’s visit

Mark came round about 1945 – good to see him. He was on a bike, as the car is in for repair (no dashboard lights – must have been a horrid drive up from Suffolk yesterday). Supper of a rather nice chicken pie from a butcher in Peasenhall, icecream & red & black currants.

Went through the intro page with him – he’s a bit of a white space merchant, certainly not a subscriber to the idea that all info should be available without scrolling. i made some mods while he took a bath (only 1/2 hour … hope he didn’t feel rushed as he usually takes a good hour, the same as I do). A few minor mods to the intro page and we’re both happy. Some of the links seem to need a mod, so I’ll sort that out later (weekend, possibly).

Then watched an episode of Dr Who I’d recorded that neither of us have seen yet (episode 8) – evening ended around midnight.


had a text from Sean today asking if I am going to Oli’s. He seems a little nervous as he also won’t know anyone – I’ve emailed him back saying I’m in the same boat, and offering to meet up first if he wants. E-mail back – late eve – saying he’ll ring me Fri to fix this up.

quiet day

followup e-mail from Oli confirming that he’s going ahead with Saturday 1400-1800h. It might be interesting to meet his other friends, but I’m rather nervous at the prospect (being a lot older than he is, being disabled, getting to the point of hearing loss where things like parties can be a problem, not liking parties much …. all the usual crap). But unless the weather is absolutely foul I’ll certainly go along – this is supposed to be the year where I operate rather outside my (hopefully former) comfort zone. Anyway, Oli would undoubtedly give me a certain amount of gentle ribbing if I don’t make it – one of the things I most value about him is the way he can constantly challenge me,without ever pushing too hard.

Did a bit more work on a couple of demo pages for Mark, otherwise a gentle day recovering from yesterday: why do I always overdo things when I go out? But at least I can now choose to do this if I want to – the TENS unit is a blessing in that sense.

garden, GP again

Spent the morning in the garden – pleasant sunshine, 24 degrees, and the first of the dark Morning Glory flowers is out … possibly because I’ve been watering every day for the past week unless there’s been significant rain. The acid-yellow snapdragons are coming to an end, but I think the one that shares the tub with the morning glory has another flowering left in it: they should look fantastic if I can get them flowering together!

The fuschia on the waterbarrel is starting to do well: it seems to be an exceptionally prostrate form, which is excellent for the spot. Next year I might try to add one of the white trailing ones as well – it’s just a little bit ‘same-y’ at present. Geranium (pelargonium) ‘apple blossom’ is in full flower in the pot on the top bed – but the one outside the back door is always late (if at all) – due to lack of sunlight, I think.

Doctor’s appointment at 1410: Dr Sergeant is now only working as holiday relief, so I got a new guy who I didn’t take to terribly. But I needed a new certificate for work, and also more co-codamol (much cheaper with a prescription for 400 than over-the-counter, but he’d only give me a scrip for 200. Still a slight saving though).

Came back via Hammersmith …I’d decided to change my phone contract as I no longer need so many inclusive minutes now I’m not at work. So I’m now on 25 inclusive minutes rather than 60. I’ve stopped itemised billing, as well, but kept on the insurance. Total cost now around 37 a month cheaper … every little helps! Also upgraded my phone … didn’t want to shell out money for it, so I got a Sharp GX25. Just a little smaller than my present one, 640×480 camera, no sticking out antenna, plus the essential iRDA. The old one can go to Theo or Chloe (I’ll ask Jane which, as Chloe got my last old phone a couple of years ago).

Back rather painful after spending the afternoon on public transport etc. Evening spent deleting stuff off old phone, transferring numbers etc … the IR beam from the PDA is fine, but the phone rejected quite a lot so I had to do it by hand. I suspect that some fields in Outlook are not fully compatible – there is a CD-ROM with the phone, so I may decide to spend money on the USB lead for it. But for the time being the USB lead to PDA, then iRDA to phone, and the same in reverse, works well enough.

Rang Oli around 1900h – he is going ahead with having a garden party or whatever on sat (13th) from 1400-1800h. He seemed tired, but has had a good time in Paris.

E-mail and followup call from Mark: the upshot is that he’s coming round on Thurs eve for a bath and final go at the website as he’s in London for a couple of days. He volunteered to bring food and cook – sounds good.

more family

Thurs

Morning spent shopping! Walked up to Argos with mum to get a replacement kettle – typical that an essential household appliance should break down when she comes to visit, it seems to happen every time. Then back via Tesco for food for tonight etc. Mum found the walk back from Tesco with shopping rather difficult – she is only used to carrying stuff as far as the car, apparently. Though I think she was probably carrying a bit more than me – out of concern for my back.

Mum wanted to do the veg’s after lunch, so she did this while I lay down … trying to get as much use out of my back as possible over the next couple of days, so am resting where possible.

Toby and Theo arrived soon after 1500h: cup of tea in the garden, but Theo rapidly disappeared to watch the Test match on C4. Around 1600h we decided to go for a walk – Theo would obviously have preferred to stay watching the cricket, but was his usual cheerful self. Tube one stop, then a pleasant walk on Tottenham Marshes up to the lock. Watched a couple of boats going through, back home around 1745, rather later than planned. but a phone call from Jane (& Chloe) to say that they were just about to catch a bus from the bottom of the Grays Inn Road … they arrived about 1900h.

Supper – later than planned – at 2000h was roast chicken and stuff (veggie-sossies and separate stuffing for Chloe), apple pie to follow (cheat – bought ready-roll pastry). Went down well – Theo tried the butternut squash and really liked it, Chloe had three helping of roast spuds. I was please that the kids enjoyed the meal – Mum had been rather worried that I tend to use herbs and spices in cooking (cloves in the apple pie, for example), but either the kids didn’t notice, or they found it OK.

Kids – well, all of us – were pretty stuffed after the first course, so there was a 20-minute break before pudding. Theo found one of the Simpsons DVD’s, and sat very quietly on the sofa looking at the cover. It was obvious that he wanted to watch it, but realised that with the dining table out it isn’t possible to use the telly in the front room. I cleared things with Jane, then offered him to use my bedroom telly & DVD player … the expression on his face as he settled into the recliner armchair in the bedroom with the remote controls to hand was priceless! Chloe soon joined him, and they were allowed to eat pud. in there.

I retreated to the garden after supper (I do try not to smoke in the flat when I have non-smoking visitors) while the others cleared up & stacked the dishwasher. then coffee in the garden for adults while Chloe and Theo continued with the DVD.

Fri

Morning was a bit of a panic as Chloe took forever in the bathroom – it’s true what they say about 15-year-old girls! However, everyone off on time OK. Mum then retreated to bed for another couple of hours, while I did a bit of clearing up and stuff.

Mum wanted to get an Italian dictionary (she’d left hers at home) and some holiday reading, so went to the bookshop Bam uses on Haverstock Hill. Tube / Silverlink to Kentish Town West – got a bit lost going to the bottom of Haverstock Hill as Mum got diverted into walking through the park, so went a roundabout way. Visited Daunt books (I got Grigson’s “English Food”, and Luke Sutherland’s “Venus as a Boy”). home via Hampstead Heath Silverlink, getting back around 1430. Lunch of cold chicken & salami, salad etc, then a lie down. My back has just about reached its limits – even with max. painkillers and use of TENS unit, so my movements were pretty constrained in the evening, although I tried fairly hard not to let it show too much for fear of worrying Mum. I did explain, however, that the TENS unit lets me do more than normal, but that when I reach my limits it takes a painful couple of days to get back to the usual state. The damp drizzly weather didn’t help, either.

Supper was chicken soup and the rest of the apple pies from Thurs. Mum had an early night – cab booked for 0330h Sat. I had a bath etc around 0130, but didn’t go to bed … wanted to be up to see her off, which happened on time. Then to bed and collapse!

family visit

Tues pm was a trip to Argos to get a pump for airbeds: I’d intended a footpump, but was seduced by a battery-powered blower. Got home and dug the airbeds out to test them for leaks – the blower inflates then in LESS THAN A MINUTE through the large hole! YAY! (Though if I didn’t smoke so much I might not be so terrified at the thought of blowing up two airbeds) Left them for a couple of hours and they don’t seem to be leaking, so have deflated them & hung in the bathroom to air them out as they smell of rubber rather as a result of not having been used for a couple of years and stored in a plastic bag.

Spent Tues eve & Weds am cleaning the flat – full thing: hoovering, dusting, cleaning the bath etc. Also trip to Tesco, for as much as I could carry (including desperately-needed cat litter).

Mum arrived teatime Weds, having been delayed leaving home. She’s scared of tubes after the bombs, so caught a cab from Baker Street. £5 on the coach Oxford to London, followed by £25 cab! Pleasant evening in the garden.

Sim rang with update on his move. Their buyer is now back on, having sorted out someone to buy their existing property. however, the place that Sim wants to buy is accepting an offer from someone else, as Sim had had to pull out / defer. However, if that doesn’t work out, they’ll reconsider Sim’s offer! BUT, Sim & Anne have seen another place which they very much like – house dating from 1430, 10 acres …. has not yet actually gone on sale, but they’ll put an offer in via the solicitor as soon as it does (by phone from France, if necessary). I really hope that this one works out for them.

Oli’s garden

I’d arranged to meet up with Sean at 1400h in the Cafe on Hampstead Heath before going on to Oli’s together. however, Silverlink Barking branch was closed due to engineering work, so I caught the tube to Highbury & Islington & caught the other branch. Unfortunately, the website had neglected to mention that this branch was also closed between Canden town & Willesden, with an alternative bus service replacing it.

Duly got on the bus at Camden road – the driver had never driven the route before, the direction arrows put up for buses on diversion lead to a road closed for re-surfacing work in the middle of the Camden 1-way system…. we spent a good 20 minutes going round in a traffic-ridden circle. One of the passengers took pity on the driver & gave directions, or we’d probably still be going round! Turned the TENS unit up a long way on ‘mixed’ setting as soon as I got on the bus, but it was still a lot of jolting & bouncing about that I really didn’t find comfortable. Bus got to Gospel Oak at dead-on 1400 (instead of the 1330 I’d been aiming for): I got off and pulled out the mobile to call Sean, when it started ringing. It was Sean, about 30 yards away.

Got to Oli’s about quarter past, and were let in by Keith (his friend from Newcastle who’s staying the weekend with him). Oli was in mid tooth-clean, looking good, and gave me & Sean big hugs. We were the first there – predictably. Very pleasant hour or so sitting in the garden – Oli & Keith had made good food. Another couple of friends (Mark & Peter) arrived, it started raining, so we moved inside. Malcolm, a friend of Oli’s through work also arrived. Oli has a device with balls on, which he was using give standing-up back massages to people: a very weird feeling, especially when the balls ran over the electrode pads from the TENS unit.

The afternoon was pleasant, although I didn’t really take to anyone new except Keith. That could be because my back was starting to give me trouble by the time we moved inside … I obviously bruised something on the bus. Mark & Peter, and Sean, left just before 1800 … although invited to go into town with the others for the evening I had to decline as it was clear my back didn’t have much left in it. Oli looked on the web (on Keith’s laptop: his own has been broken for a couple of months now) & discovered that there was a replacement bus in five minutes, so I left in a bit of a hurry just before 1900, getting home at 2000h. Another bloody bouncy bus journey.

During the evening I could almost feel the tissue around the damaged part of my back starting to swell, and by midnight I was almost immobile, with a very great deal of referred pain where the nerve is trapped (ie my right testicle felt as though I’d been kicked in the balls). I’m sure that the change to damp weather didn’t help any. either. A very difficult and painful night, getting to sleep finally around 0600h.