Tag Archives: arthritis

Well … that was weird …

Lancing Beach. Just to throw you when I’m talking about Suffolk beaches later. Some guy found a gold coin here.

A strange week all round. I was going to share some of the questions and answers I’ve been doing with Gareth, because they are hilarious but a couple of bits happened that I thought I’d share instead.

First up Mum. As you know, Mum has dementia. She passed the NHS memory test with flying colours but then, everyone does. My Dad did, even after his diagnosis with Alzheimer’s in 2012 As far as I know, they were still giving him this stupid memory test until 2017 – because nobody told us or the Doctor about his diagnosis until then so we still didn’t know what he had – and he was still passing the bloody thing with flying colours. It’s not just the patient who is in denial for ages when dementia rears its head, it seems. The NHS also.

As well as dementia Mum has arthritic knees. A while back, in 2015, she had them looked at. The surgeon thought a new knee would be too complicated and that the requirements of the recovery process too taxing but they did give her a new hip, which she also needed. To be honest, I think the knee was more the problem but half was better than none and it did remove a fair chunk of pain so that was good.

Off I go wandering from the topic again … back to the point … the result of not having had her knee done is that Mum has one particularly dodgy knee which tends to give way on her. The other day it did and she ended up on the floor and hit her head – I blogged all about it here. Quick recap: because she’s on blood thinners, she had to go to hospital and have a brain scan. She had to go in alone because … Covid … which for someone with dementia who has banged their head, is not ideal. They were great with her, though, and she did well too. They took her in at three pm and was ready for collection by six. But she explained that her knee had given way and she’d grabbed the nearest thing for support which was, unfortunately, a door handle, so the door opened and she slid gently to the floor where she ended up wedged in a small space and so she couldn’t get up.

Having had this mishap, I thought that maybe it was time to get her something a bit more stable than a walking stick to use in the house. A Zimmer frame wasn’t much good as she’s quite frail and couldn’t lift it. She uses a fold up thing with wheels and a seat when she is outside which, I believe, rejoices in the name of a ‘rollator’. These are great because the wheels make them easy to push, the seat provides welcome respite from standing too long and they have breaks to help you control them. This one is ideal for outside but she needs one that’s smaller for use in the house. I had a look … God bless the internet … and found some that I thought might do.

Three Wednesdays ago, I sat down with Mum and the Carer and we looked at three wheeled light weight rollators. There wasn’t one with a seat, well there was but it was about £200 but I found one with a bag that she could use to get from one part of the house to the other. She can still put the secateurs in it lay flowers across the top of the bag etc. Having found it, I showed it to her and we had a chat and she decided it might be a good thing to have so I ordered it, there and then.

A week later and one of Mum’s carers found one that another lady wasn’t using. It wasn’t light weight but she thought it might be useful. I agreed it might be and suggested she bring it round and I’d cancel the other, except of course that the other then proceeded to arrive. Usually when you buy these things you get an email saying it’s been despatched. In this case, we didn’t. So it turned up without warning.

The Carer looking after Mum that day opened it, set it up and Mum … went into orbit.

I kid you not. She rang me, incandescent with rage, asking what the blazes I thought I was doing buying stuff without even consulting her. It was rubbish anyway, she fumed, because it doesn’t have a seat. How could she sit and talk to her friends if it didn’t have a seat?

I tried to explain that it was to use in the house, to replace her stick because it was more stable but a bit more compact than the one with a seat which she uses outside. There was no point in having it then she needed to do various things with it and without a seat she couldn’t.

‘But your stick doesn’t have a seat …’ I said.

‘No and so I can only sit in the kitchen or the drawing room because I can’t get in and out of the chairs anywhere else.’

Fair point but she doesn’t go anywhere else and she uses a shower stool I bought her (God bless you second hand shops in Galashiels). Sometimes though, Mum’s now is not the same as ours. I think she was at some point where she needed a walking aid but was still quite spry and doing stuff about the house. Things like cooking, and sending and replying to emails on her computer. She hasn’t done any of that for ages. I hadn’t properly clocked that her perception of when she is is changing, or how extensive her dementia is because she’s still so normal to talk to … usually.

I asked her if it might not come in handy?

Anyway, She told me in no uncertain terms that it bloody well wouldn’t, that it must be packed up forthwith and sent back.

After gently explaining to Mum that we had ordered it together and that she’d had a very hectic week and must have forgotten, she finally simmered down but wasn’t keeping it, oh no,  she wanted it sent back and replaced with the version that had a seat. Now.

This is where I cocked up. The way you do this with a demented person is not to set them right on the facts, you just say, ‘oh dear, they’ve sent me the wrong one,’ or ‘oh dear, how did I manage to order the wrong one,’ and leave it at that. It would have saved a lot of angst filled explaining.

Never mind, let’s get on with it shall we. I’d bought the thing online with her debit card, because I have power of attorney, except the bank don’t know that or they won’t give us a card so I did it pretending to be her. Easy then, I’d ring them up and sort it out but … they were not answering the phone unless it’s really urgent because … covid. Ugh. So I emailed them. Yes they would take it back. No they would not be able to replace it with another one with a seat, have me pay the difference and swap one for another. Oh and the cost of return would be £16.

Sixteen quid! The fucking thing only cost £48.

Bollocks.

The Carer who’d found a similar one hadn’t brought it round yet and seeing the chat about this on the … well … chat, she asked if she should.

‘Yes,’ I said, ‘but hide it, she may come round to using it. We’ll have to see.’

In the meantime, since the company that had sold me the new one didn’t have the one with the seat in stock I just thought it best to hang fire for a bit. The carer packed the new walker away and hid the box away where Mum wouldn’t see it.

Two weeks on, and during this week’s visit, the Carer told me that she’d managed to get Mum to use the second hand one for a bit on Monday but she’d suddenly refused on Tuesday. I thought I may as well give it a go, so I wheeled it in to the drawing room and asked her if she’d like to try it. She quite liked it but wasn’t sure because … well because she uses her stick to pull things closer, pick things up, press buttons and light switches she can’t reach, point at stuff etc. That said, after a short test run during which she really quite liked it, I left her with it by her chair.

Thursday morning and she told the Carer how wonderful it was and that maybe we should get it cleaned up.

‘We could but d’you know Mary ordered you a new one, I think it arrived the other day.’

‘Did it?’ Mum asked.

The Carer said that yes, it had and asked if Mum wanted it set up for her.

‘Oh yes please.’

Apparently it is now a hit. So much of a hit that, nine days on from ringing me in a fit of something approaching rage at its arrival, she rang me to say thank you and tell me how wonderful it was.

That, people, is dementia. Light and shade, rain and sun, on and off: random.

The obligatory seal pup picture taken on the beach I was actually at this weekend. 🙂

On a personal note, remember I did an entire day’s metal detecting without sitting down for lunch the other day? Yeh. Well that was a bad idea, I did my back in. It recovered after two days so, happy that all was well again I did more metal detecting on the beach (only for an hour and a half) went for a walk etc. We saw a seal pup and I took the obligatory Norfolk (well … Suffolk) coast seal cub picture. Awww or what. Then we went and had supper at friends. At which point, back fully recovered, I was able to remove the pain relief pad while I was there and felt oh so much better. What a relief.

Or not.

The next day, the back pain was back a little and starting to get a bit worse, but nothing major. Thursday morning. Arnold’s dingleberries! It was hideous! Friday; also hideous, and even today it is still evil. Needless to say the first day anyone who might be able to fix it can see me is Wednesday next week. Of course. And needless to say the first day I can see anyone is Friday. It could be worse … I had a club dig scheduled for tomorrow, which I don’t think I’d have been able to go to, and now I have a week to get better, or at least, well enough to do an afternoon of metal detecting without three days of scream ab-dabs afterwards.

The pain levels have been pretty grim. Up there with breaking my collar bone in the constant nature of the pain and, when it has subsided a little, the ease with which the slightest of movements will set it off. Also, at the risk of being a bit personal here … weeing. Or more to the point wiping. Fucking hell that hurts. How, in the name of the almighty do women with chronic back pain wipe their arses every day? Is there a lot of screaming? Is there a … surgical device? Jeepers. It’s alright for you blokes, all you have to do is wave it about a bit and shove it back in your trousers. We ladies have to get our hand a great deal further round and fuck me that smarts. I never thought I’d envy the ancient Romans their communal loos with the sponge on a chuffing stick, but frankly, even the prospect of wiping my personal bits with device of dubious provenance that had been used by multiple others – and probably not washed particularly well – would be preferable to the pain of doing it my bastard self. I have, at least, reached the point where I don’t dread going to the loo but it’s still about as much fun as sticking cocktail sticks into my own eyeballs and possibly slightly more painful.

Yeh so … maybe little bit too much information there. Yeh. On that note … I’ll leave you. Don’t have nightmares kids.

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If you need to take your mind off that last paragraph …

You could always pop over to Kobo or WH Smith and download my latest audiobook from the Kobo Sale. It starts officially on 9th September but it has been reduced from £5.99/$6.99 to £2.99 and $3.99 the kobo link, among others, is on this page … here.

Small Beginnings is not quite out at all retailers but getting there … slowly. More on that story … here.

Read by Gareth (The Voice of K’Barth) Davies to the usual extremely high standards. If you want to see what it sounds like, you can catch a listen to Chapter 1 from my soundcloud page here. Or click on the picture.

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Learning the hard way, or at least, the cold squelchy way…

Not that I’m melodramatic or anything … mwahahahahargh!

This holidays, McOther, McMini and I joined another family of friends skiing. I have never been skiing before, for the simple reason that from the age of about twelve I’ve been under doctor’s orders not to.

Some of you will know this, some won’t, but basically,  my knees have taken a bit of a pasting over the years; bone disease as a kid, torn ACL after jumping over a wall aged 25, and then twenty years later, a ‘possible’ tear in the other ACL (MRI ‘inconclusive’) after I rode my bicycle blithely across what I thought was an empty street and was surprised to catch a slow moving Ford Fiesta in the back. Not their fault I genuinely hadn’t seen them. I’m just lucky they saw me.

The net result of all this – apart from the fact the knees now match – is arthritis. First knee was knackered pre ligament reconstruction and arthritis is the natural result of soggy knee ligaments. The second knee is so arthritic after 25 years of taking the extra weight that even with an unequivocal MRI result, it’s probably reached a stage when reconstruction would make the arthritis worse. Which is why they can’t do the original, of course. The ACL damage doesn’t hurt but the arthritis in the knees does. Eight years ago they told me that were I sixty, they’d fast track me for a left knee replacement because it was so bad. Alas bionic knees only last 10 years, and you can only have two so no can do until I’m sixty. Oh well. Only another 12 years to wait.

So here I am. Aged 48, with knees that are, frankly, a bit fucked. A lot more fucked than they were when the first doctor ordered me to stay off the ski slopes. But, for the first time, I was in a position to try skiing somewhere that it wouldn’t matter were I unable to go piling up and down the slopes all day, because there’d be other stuff to do. And McOther is an excellent skier and McMini wanted to try it.

So, ever the adventurous one, I bought some huge knee braces like scaffolding, packed a HUGE box of aspirin and off I went. Here are some of the things I learned:

Spring in the mountains is hot.

No shit, Sherlock? I hear you say. But yes. I was thinking snow=cold, mountains=cold.

Schoolboy error.

It is is not true.

Here in Blighty we bought ourselves lovely thick warm coats to keep out all that cold mountain air. It does get cold but only at night. Also, as a novice to skiing I was tense, partly because it all happens a bit fast and partly because the feedback through my knees is less than sharp and I had an uncomfortable feeling, after waiting for 30 years and through a great deal of deterioration to flaunt doctor’s orders, that I was about to die at every turn. Rank fear aside, this is the kind of exercise that pushes your beats per minute up to one seventy something until you learn to do it properly, stop fighting and relax. Now even if it’s minus forty out there, beats per minute of one seventy plus is only going to mean one thing: a flop sweat.

But it wasn’t minus forty. Spring in the mountains is gorgeous; clear blue skies, lovely sunny days and temperatures of eighty degrees Fahrenheit (twenty something centigrade). Now if you’re going to do high intensity aerobic exercise in those kind of temperatures, take it from me, you’re going to get hot in a t-shirt and running tights. Thick gloves, huge woolly socks and clothing that is, essentially, a duvet, waterproofed and crafted into Michelin Man style duds is … less than comfortable in beachwear temperatures. To be frank after about ten minutes, it was not so much a coat I was wearing as a portable, always-on sauna. I didn’t know it was possible for a human being to sweat that much or for a t-shirt to become sweat sodden enough to wring out in ten minutes. So here’s an interesting discovery. It is and it can.

Nice.

You will discover new things.

Let’s talk about gloves. At these temperatures, your ski gloves will become very hot inside. So hot that you will discover the new and unnerving phenomenon of hand odour. Yes, put your hands in warm gloves and let them sweat profusely for three days straight and your gloves will come off soaking wet at the end of each day – sod days, in my case it was an hour and a half, tops. Even so, after 3 days they will smell like the rankest socks imaginable … until you smell your ski socks after a day in those hired boots and realise your imagination hadn’t even scratched the surface of the concept that is, ‘rank’.

These boots are made for walking.

I have many pairs of in line and roller skates and the boots are similar to ski boots. The rationale is that if you fall awkwardly you will break your legs, mid shin, rather than doing potentially crippling Potts fracture style damage to your ankles. The same rationale is behind ski boots. Only not. Ski boots were invented by the Spanish Inquisition in the eleventh century but shelved after they were deemed too inhuman a torture to inflict on mere heretics. A few hundred years later and here we are resurrecting them to protect ourselves from breaking our ankles. They are very good for this. And for skiing. But when the snow is melting, you also have to do a lot of actual walking in them. They are less good for that.

Walking in ski boots is clearly an acquired art. As far as my efforts went … hmm … well … let’s be generous and call them, ‘a work in progress’. People who have mastered the art have a kind of slowed down gait that’s a cross between a 1970’s disco swagger and someone walking on the moon. It involves putting all the weight on the most painfully arthritic bits of my knees and every walk was unspeakable.

There are many different types of snow.

Yes. This is so. And ALL are scary. I confess on the first day we thought we’d ski down the small looking hill to where our lessons were. So off we went. I snow ploughed as I’d been taught to do, a sure way to slow me to a stop and … ah … hang on … not stopping … at all. So I bailed and yes then I walked down the slope in those infernal boots. I was sweat soaked and knackered before I even got to the ski school. Because it was ice. And very slippery.

Skiing is fun … sort of.

Like that Scandinavian thing, is it Stockhausen syndrome? No, I don’t think so? Stockholm Syndrome? Possibly, that thing where you grow to love your kidnapper/abuser. Yeh, well, it was a bit like that. I didn’t like it to start with because, to use a technical term, I was shitting bricks. I was in a complete funk, most of the time, and when I say funk, I mean in the fear sense of the word as well as the smell. Then on the third day, suddenly, I relaxed. Not much, but enough to realise how people did it all day. They were not super-fit, just super-relaxed. My fear levels reduced a tiny bit as I began to feel more in control, beats per minute dropped to about one fifty and recovery time shortened to the point where I could do a run without stopping. Suddenly I got what the fuss was about and why people do it, which, I confess, I expected to do much earlier.

The great thing about it was that the actual skiing bit doesn’t hurt. Not at all. The time it hurts is when you stop. So that Wednesday, I even tried to go skiing with the others but realised, as soon as I got to the top of the mountain and put my skis on again, that the dicky knees were not up to more than an hour yet. So we had lunch up there and I crept home to the chalet and made full use of the spa, oh yes I did.

Will I be going again?

Amazingly, yes. Although I will try to manage my knees better this time.

What did I learn?

I learned that I am disabled. Genuinely, physically handicapped in a way I hadn’t actually grasped until I tried to do this. I have not been able to run for some years. There’s a reason for that. Days one and two I cried a lot. I cried because I was stiff and I cried because I knew, from the pain in my knees, that they were far, far more comprehensively fucked than I have ever given them credit for. The pain levels were about commensurate with the second week after I cracked my collar bone. So I had to take a long hard look at myself and accept some very unpleasant truths, one being that I may well end up in a wheelchair for a year or two before I reach the magic age of sixty and access to a NHS knee replacement comes. Because they seem intent on my having quality of life while I’m old, rather than now, while my boy is small. Me, I’d rather do the wheelchair later on but the NHS demurs. Another thing I learned then. If I carry on the way I am, I will be even more disabled. Soon. I will never play football with my boy, or any of the other things I still hope to do.

That was sobering and pretty grim.

IF I carry on the way I am. But there might be a get out.

So, before I ski a second time, several things have to give. I read somewhere about a thing called spoons. Run with me, I’m not talking sub duvet snuggling. It’s a way of explaining a disability. So the idea is that you have say, ten spoons each day and they represent your physical capabilities. Every time you do something that takes you over a certain level of pain/exertion/your disability you count it as using up a spoon. So you can do, pretty well what you like, but you have to ration your spoons so you can get through the day. If I have ten spoons in a day, an hour’s skiing is about seven. So I need to do two things. I need to balance it against the other things I do in a day and I need to find a way to extend the range of each spoon.

Next time I go I will be a better more confident skiier so a skiing lesson will use up less of my energy. That will help. However, because of the pain that comes after I’ve been skiing, I will have less spoons free each day, as the consequences of skiing build. I will also have to keep my eye on what happens afterwards, which I didn’t this time, which is how I ended up with a fair amount of pain and walking difficulties, which aren’t going to go away anytime soon – about three weeks, I reckon. In short, I need to make everything last longer, so I can ski more with less pain.

Back to the get out.

Over the past three years, I have been doing physio and going to the gym to try and keep myself physically fit and able and to prop up my knees. That’s good and it’s worked but, of course, I am also menopausal, which makes for a hard time losing weight. I’m also busy, which makes for a hard time losing weight – nothing causes a person to eat crap more effectively than their not planning their meals. And I have IBS, and nothing causes an IBS attack more effectively than changing your diet … except the 5:2 which is OK but gives me a mega headache.

Never mind. I’ve put on a stone of muscle under the same amount of flab as I had before. It should raise my metabolic rate but pre-menopause that’s less likely and I have to accept that it isn’t happening to the extent I’d like, or possibly at all.

So what I realised, through the medium of skiing, was that this extra stone could well be what has tipped my knees over the edge this last year.

Menopause, schmenopause, IBS, IB bollocks, this is not a drill. My back is against the wall. I have to lose weight or lose my ability to walk. I know this sounds melodramatic but that, in a nutshell, is it.

Not just a bit of weight either, a lot.

A whole effing stone. And to be honest, a second wouldn’t go amiss.

That’s going to be hard but the alternative: registering disabled, enduring a genuine physical disability, some impressive levels of physical pain and gradually losing my ability to walk without a rollator or sticks and while there is hope that I can avoid that before I hit 70, by any means possible, I’ll do whatever it takes.

So hurling myself down a mountain was a bit freaky but it wasn’t the daunting bit, not really. The daunting bit was the cold hard truths I have learned about myself.

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