Once again it has been an age since I updated my blog. The whole point of this was for me to almost keep a diary of what is going on, but instead I leave it for a bit, and then start feeling I have a lot to catch up on and it will take me too long to write, and therefore put it off yet again. I’m rapidly coming to the conclusion this is a “feature” of how my brain is generally at the moment though as I try to manage the pain and the level of medication. By the time I have focussed a lot of attention on my 1/2 (to 3/4) whole time equivalent hours at work, I’m finding I have even less capacity for other things.
So what’s been going on? …
- Trying to get confirmed date for surgery
- Completing PIP assessment (doing it properly this time, not the half-arsed attempt I made last year)
- Preparing hand-over at work
- Trying to work out what to do about my lease car
- Completing pension draw-down application and financial planning
- and oh yes, my dental bridge finally called it a day after approx 30 years and so the fun and games of trying to get that sorted began, including juggling potential dental surgery around the uncertain date for neurosurgery
Preparing for retirement
I mentioned last time that I was finding it tough to fill out the PIP application. All the way through this stupid bloody condition of mine I have tried to remain positive. I know I am far more fortunate than a very significant proportion of people in this world, and I am extremely grateful for that, but I do need to accept that all is not well, and my condition imposes a lot of limitations on me and those around me. Actually discussing with family the the impact it has on so many aspects of my life was a draining experience, and writing it down on the form was somewhat soul-destroying, but as many have said to me – if I didn’t be honest with myself and describe it properly on the PIP application form, I won’t get what I am potentially entitled to, and the help it might bring in terms of Motability support etc. Anyway, it is done now, and I got a text last week to say my application is now being reviewed by a health professional, so I expect to be asked to attend an assessment in the near future.
The other aspect of the form filling has been around drawing down the pension, and doing all sorts of financial planning. As part of the hospital’s retirement planning partner organisation, I met with a financial advisor. As I went over and over my figures ahead of the meeting, I was starting to worry I had missed something significant (paranoia from the brain fog I guess!) and that I would not be able to afford to pay the bills, but when I went through it all with him, he didn’t raise any red flags, and his main advice was to move something from my “potential nice to have” element of the lump sum category to the “do it if I can” category, as he feels it is a good investment to make. This is another feature of how my brain is – I go into so much detail on things because I’m worried I’m going to forget something, and yet even after having burned all that time and energy on it, I still presume I will have done a bad job because I wasn’t thinking straight. Anyway, doesn’t look like I’m going to be destitute when I stop work! 😉
One thing that has really driven me bonkers over the last couple of months is what to do about the car. I have a salary sacrifice (lease) car through work, and so that would ordinarily go back when I leave. It’s a great car (BMW iX3) and Ruth and I both love it, but it’s not ideal in terms of getting the wheelchair in and out of the back due to the problems I have lifting it, and it certainly won’t take a larger scooter that I will probably need to get in order to have some comfort when out and about. I started to look around at other options – wheelchair accessible vehicles, vehicles with lower and bigger boots, ramps, hoists – you name it, I’ve probably investigated it. One of the things that I was torn over was the potential need to go back to a petrol/diesel vehicle having had hybrids for several years, and now a fully electric. It seemed like such a backwards step to take, but the choice of electric WAVs is almost non-existent, and where they are available they are either rather too “utilitarian”, or I’d end up spending a very large chunk of my pension lump sum on them. This is all mixed up with the PIP application as well of course, because that could provide me access to Motabilty scheme vehicles. I decided at one point I would buy a [moderately] cheap WAV to see me through the gap between giving up the lease car, and getting back to driving (hopefully) post-surgery. That was an experience I don’t want to repeat! I won’t name the company, but I went to a large 2nd-hand WAV place near Portsmouth, where an unhelpful sales manager told me how hard it is to get decent quality WAVs (don’t know what that says about the 20-30 he had on that site and apparently several dozen more elsewhere!!), and he wanted to know I was going to buy something before I had a test drive. It was ok, and had it been from a more likeable person, I may well have bought it, but it didn’t appeal enough for me to want to give him my business. In the end we decided I should just bite the bullet and take out a [rather hefty] loan to buy the iX3 out of the lease, pay the loan off when my pension comes through, and decide what we do long term when we know what my mobility is like, and had a chance to look properly and the sort of mobility scooter I need, and thus the type of car that will meet our requirements. I’ll also know whether I am entitled to Motability by then.
Whew! Something that’s actually done and dusted! 😌
Juggling medical needs
In my previous post I mentioned that surgery was provisionally planned for April 18th. As the date drew nearer and nearer I tried to get confirmation, I was informed I was on Mr Mundil’s theatre list for June 7th, but his patient pathway coordinator would check with him to see if it might be earlier. In the meantime I had been given a treatment plan from the orthodontist. This would involve removal of broken bridge (which had been temporarily cemented back in), extraction of two eye teeth, and then start on construction of a new bridge using a couple of implants. The eye teeth were removed and a temporary denture made. The next stage would be to do the implants and some bone-grafting. There then needs to be a 5 month wait for the bone and implants to grow together before the bridge can be made. The thought of waiting until a few months after neurosurgery to get that started wasn’t appealing, so I asked respective parties if stage 1 of the implants could be done before my SCS change, and thus the 5 month period could be happening at the same time as I’m recovering from neurosurgery. The orthodontist was able to fit me in on May 2nd, giving me 5 weeks before I go to neuro. However, when I checked this with Mr Mundil, he said the anaesthetist would want a longer gap between sedation for my teeth and full general anaesthetic, and leaving a big enough gap to ensure any post-surgical infection to be dealt with. Mr Mundil therefore proposed postponing surgery to June 20th.
The thought of waiting another two months wasn’t acceptable to me as my pain worsens, particularly at night when I don’t have the benefit of a lidocaine patch like I do during the day. I said to Mr Mundil that getting my SCS swapped was my priority, and he was able to bring my operation forward to May 30th. Still somewhat later than I’d originally been told, but I do know the pressure the hospital is under and the lack of bed availability etc. So the new plan is that I have the SCS swapped on May 30th, see how my recovery progresses, and get booked in with the orthodontist when everyone is happy that I am in a position to be able to undergo the required dental surgery. Gives me a chance to save up for the implants, because they are not cheap! 😧 Meanwhile I am persevering with having a denture again for the first time in thirty years. It’s bringing back memories of my teenage years, and not the good aspects of that period! 😣
Enough of the waffle, how am I feeling and how’s my health?
Well it has to be said it is a very strange time. As I’ve touched on above, the pain is definitely worsening. Having a lidocaine patch on for 12 hours during the day makes quite a big difference, and in general keeps things just about manageable. Within an hour or so of taking it off though I take a downward turn. That’s probably simply part of it being the end of the day as well, but it means my sleep is very sporadic. I get tired, and fall asleep watching TV or playing the Xbox, but it’s not for long, and the same when I go to bed. I’ll wake up thinking I’ve slept for hours, and realise I’ve only been in bed for an hour. I’ve taken diazepam a couple of times, and it definitely helps me get a decent amount of sleep, but it’s noticeable I’ve had very strange dreams each time – or maybe they’re the same dreams I have most nights and it’s just that I remember them when I’ve taken diazepam. Anyway I’m pleased to report that, regardless of how vivid they were, I haven’t inadvertently buried my mother alive, nor has their been a gun rampage in the old nurses home (our work offices)! 😲 Someone would definitely have told me about that wouldn’t they? 😊
Something that else that reappeared is the tingling and numbness in my arm. It started a few weeks ago with a tingling in my right thumb. That became more persistent and over the last week or so has extended up my arm quite a lot of the time. It doesn’t hurt, it just feels a bit numb and like mild pins and needles in different places up my arm. I’m also noticing I’m getting problems controlling my thumb when I’m trying to do things on my phone screen. I often can’t control the difference between tapping something and doing a long-press.
As my retirement date draws ever closer, all I can say is that I feel very odd about it. I know it’s absolutely the right thing for me to be doing, both for me and the trust, but I’m loving the projects I’m working on at the moment, and I’ve been doing some mentoring as well. At the same time, I know how the brain fog is increasingly affecting me; constantly doubting myself as to whether advice I give is solid or in anyway clouded by my mental capacity. I think the key thing there is that I am very much giving advice, and where I do have any doubt, making sure I tell people to check out what I’ve advised them with other sources. My days of making firm decisions are, I suspect, over until the medication is dropped again post surgery. 32 years is a long time to be with one organisation, and trying to write a handover document is a tough ask. I’m therefore really pleased to have been given an honorary contract so that I can continue, in a voluntary capacity, to offer words of wisdom (well words!) in response to questions that might come up about things I’ve worked on, had some input to etc. Whilst I’m not prepared to be treated as a mug who works for free, UHS is a great place and has been good to me both from an employment and health perspective, and I am more than happy to give something back. It’s also meant I am in the fortunate position where I have already had a few people knocking on my [virtual] door asking if I will be doing any freelance work once I’ve recovered. Very flattering of course, but I need to see how my recovery goes and whether the changes in pain and medication allow me to do some ad-hoc bits and pieces.
And so folks, I think you’re just about up to date with what’s been going on in my world. I will endeavour to make sure my next post is sooner than telling you how I feel after surgery! 😳 Hopefully it won’t also be me repetitively telling you how bored I am after retiring, or how I am still struggling with the lack of bloody checkpoints in the “Reactor” level of Call of Duty Modern Warfare III on veteran! 😉
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One final thing. Since WordPress/Jetpack removed the ability to automatically tweet blogs due to the increased costs Twitter/X want for the API, I no longer send my posts to that platform. In fact I’ve come of TwitterX completely. You can though subscribe to my blog directly via the link at the bottom right, and my posts also get sent to my dedicated Spinal cord herniation blog Facebook page, and on Mastadon Indieweb.social