National Arthritis Week: Learning to listen and learn.

National Arthritis Week is about raising awareness of arthritis, among other things, and I’m on a bit of a self-awareness thing this week anyway, so here we are. All my posts are tagged so if you want any more information just click and they will all be sorted neatly into a list. I love tags. Tags are good.

They say that hindsight’s a wonderful thing: and of course it is because it enables us to go back over an experience and analyse where something went wrong, or right, and change our behaviour where we need to. I no longer touch hot electric rings, for a start…

Having never had any problems with my right big toe whatsoever, the bastard thing has recently decided to betray me and develop arthritis too. No, I haven’t had a proper diagnosis yet but it absolutely has and I’ll get it treated sooner rather than later.

Inspirational teazel & snail combo time again. There aren't any more photos: I'm not posting foot pics. I know the internet... ;)

Inspirational teazel & snail combo time again. There aren’t any more photos: I’m not posting foot pics. I know the internet… ūüėČ

With hindsight, I should have had the other one treated years before¬†I did, so I know that if I let it, this could probably grumble on and only cause me minor and intermittent problems for years. I’m remembering things, though, and my brain (which loves to recognise patterns and make connections) is screaming “you’ve been here before – this has already happened!”

No, I’m not experiencing d√©j√† vu and nor am I the victim of some problem with the space time continuum. What I¬†am experiencing is the most ridiculous leg cramps I think I’ve ever had, as my right calf muscle’s been going mental all day. You can actually see it twitching. Weird.

When it happened this morning just after I got up, my thoughts fell together as my initial thoughts were immediately stopped in their tracks as my memory dredged something out of the depths and went skidding into them. Like this:

Ow, I’m about to get a massive cramp in myohshitIusedtogetcrampinmyleftlegthewholetimewhenIwasateenagerandIhaven’thadthem
inyearsandcouldthathavebeentheearlystagesofthearthritis?¬†I wonder if I’m compensating for the big toe and hurting myself…

Now, that might not be what’s happening and I’ll check with my GP, but when I paid attention to how I was standing, without altering my¬†stance, I was throwing my weight to the outside of my right foot and saw that my big toe was slightly lifted off the ground. You use your toes to aid with balance and so mine is horribly off: ankles that usually roll inwards anyway¬†are being pulled¬†far in the opposite direction and it’s setting off what feels like a chain reaction of muscular protests.

It’s¬†only a leg cramp and uncomfortable as that can be when it’s a bad one, I at least know how to potentially avert it when it is about to happen, so I’ve been doing lots of stretches that make it feel better and not doing anything that gives the slightest indication that it is going to make things worse. All day I’ve been bringing it back from the brink but it’s not going away completely. It’s been 15 hours now so I may end up with tenderness that hangs about for a day or so even after the muscle’s stopped jumping like a frog on a hot plate. I am¬†so incredibly hot right now. Anyone would be mad not to. It’s fine: I’m actually finding it really funny to watch bits of me just go a bit mental. Now that I have identified it, I know that I need to go and get the orthotic insoles out of the cupboard. Yes,¬†all the sex.

I know that arthritis is skeletal and what I’m talking about is all muscular, but if your gait changes or you start using muscles differently you can set off all sorts of problems as you put your body under an unnatural strain. So I am paying attention to this because if I ignore it I’ll endure higher levels of discomfort than I need to, for longer than I need to which will have (or has had, at least, in the past) a pretty big impact on my life and that will probably be magnified as I age. Enough for me to weigh it up and decide it’s important to pay attention to this. I’m trying to be analytical rather than hypochondriacal.

I already know that my right leg is significantly stronger than my left and that it’s where all the power is when I walk as I’ve been trying to rectify that after a physiotherapist pointed it out to me. Unsurprisingly enough, it was taking the strain because of the arthritis on the other foot so that’s why it’s much stronger.

It occurs to me that I need to strengthen my left leg as much as I can before surgery, to avoid causing myself unnecessary strain or risk of injury when the right is unable to take the strain. I might have to try swimming. I don’t enjoy using busy pools because I can’t see without my glasses, but it’s non-weight bearing so I could do a lot of it, concentrating on building up the left leg, whilst minimising wear and tear on the right. I can get prescription goggles and trade off feeling less vulnerable because I can see, against looking like a surprised mole as I peer at people through the goggles. They’ve reduced in price a lot now and since they’re not produced to exact prescriptions I can get the closest match to mine and probably minimise costs by doing some research online.

I could go up and down stairs repeatedly or walk for miles, making myself push off off the left foot rather than the right, but I think it might trigger more problems. I know my GP is always telling me that I should swim so I’ll check with her first but suspect she’ll recommended swimming miles of lengths, not walking miles.

Orthotic insoles (or even shoes that are specially fitted with them) are often recommended for people with foot problems which can affect their posture, including things like arthritis. By encouraging the foot to hold the correct position, the pressure on the joint can be eased. I don’t wear them as often as I should, which is always, because you can’t wear them with soft slippers. You need a shoe that holds the insole in the right place and is large enough to accommodate it, as it can add half a shoe size, although you can get some thinner ones. I don’t usually wear outdoor shoes indoors, so what I may need to do is find something better and just designate them as house shoes. That sounds like something my nan would wear, but if it’s likely to help before I can hopefully get it fixed, I’ll try it. In the meantime, I’m sucking it up and wearing them like I’m supposed to. They will help as soon as I adjust to them, by tomorrow, probably.

The leg cramp’s connected to the hip cramp. Yes, as if a twitching lower leg wasn’t enough, where I’ve been standing up, I’ve clearly tensed all the way up that side, so my knees ache and my thigh muscle is aching like I’ve done a lot of activity¬†and the muscle that Google tells me is the gluteus medius has just tensed up and largely stayed that way, which is uncomfortable. If that’s ever cramped up on you, you’ll know how much it hurts.

Having the related things I do (scoliosis and TMJ Disorder) any sort of pain can set off a chain reaction as I tense up or something decides to go into spasm. Since not everything is in quite the right place anyway because of the S curve of my type of scoliosis, it might be that my pain isn’t typical as that has happened quite often when I’ve been told I’ll feel a pull on a certain area in a pilates position but somewhere else pulls instead. My ‘normal’ isn’t normal for a human, so I’m already prone to muscular and skeletal aches and pains in the area of my hips, lower back and around my ribs at the back on one side just by being active.

The TMJD means I have to be careful with my jaw and live in a fairly constant state of trying to make it stop trying to break itself with incredibly strong muscles that are permanently tense to the point of pain and knots in my shoulders that no amount of sports massage has managed to eradicate. (It’s probably caused because my bite is out of alignment but the only thing the NHS can offer me is surgery on the muscle. I’ve repeatedly asked for non-surgical options and we’ve been through all those already, so I’ve been told it could cost thousands of pounds to have my bite corrected privately, with no guarantee that it is what’s causing it.) I really don’t want surgery on a major facial muscle, although I’ll do it if the oral surgery team recommend it. At the moment everyone is agreed that the risks outweigh the potential benefits in terms of how seriously facial nerve or muscle damage could affect my quality of life.

That tension travels down through the muscles in my neck and shoulders and triggers migraines which may or may not affect my vision, depending on how bad they are. Until I was able to try a different treatment earlier last year, I’d been living at a pain level of between 9 – 9.5 for weeks on end every time the painkillers wore off. I probably had no more than maybe 2 or 3 pain-free days a month, although it can suddenly just go quiet for a bit and stop causing problems so it’s not been constant. But even with painkillers the pain was probably a 7 -8 most of the time I was awake. It was exhausting just being conscious, trying to get comfortable.

I’ve learned some exercises and techniques from the oral surgery unit at the hospital to help mitigate that but it requires conscious effort and time and if I was working in an office I’d have to find some way of dealing with it whilst not looking ridiculous to colleagues, although such things become less important where pain’s concerned, I’ve found.

I’m used to listening to my jaw and trying to stop problems before they develop and I think I need to do that with this foot. I know that the ridiculous facial contortions and other treatments do actually work, and although I’m having a less good day today, I rarely take any painkillers these days, which has got to be better for me. I’m not a martyr: if I need it or it will reduce inflammation then I’ll take it. I’m not rejecting it as an option, I just know necking maximum doses of painkillers every day, even under medical supervision, takes a toll on the body over time and affects how it responds to pain signals.

Talking of pain: my right foot. It doesn’t hurt with the same intensity that the other one did but it’s clicky and keeps making noises or I feel something go crunch and I’ve had a couple of instances of it just going rigid and a nerve being pinched as I have been walking about the house. I can feel stuff keeps shifting about, which isn’t normal. Leaving the other one longer than necessary must have caused damage in the form of unnatural wear as the joint was pushed out of position. That was brewing for nearly 25 years.

Apart from the common sense thing of not making something worse by ignoring it since it will increase the wear on the joint, in 25 years I’ll be 65 years old! In addition to making me flinch, it’s reasonable to assume that my skin and bones will heal less quickly and that I would probably take longer to recover then than I would if I have the surgery at the age of 40. Also, in 25 years time, my parents, on whom I relied heavily immediately before and after the operation for physical assistance, probably won’t still be around, or if they are will be unlikely to be as able to help as they would be now.

Obviously I have no idea what any of our lives will be like in 25 years but I can make likely predictions of how I’d recover if I had a cheilectomy some time next year. If I delay surgery and the arthritis flares up on the left foot (which is a possibility) then I could have two feet that don’t work and that would cause huge logistical nightmares best avoided, not to mention actual disability.

The Reasons To Have Surgery column is adding up now and vastly outweighing the reasons not to, all of which are things relatively easily overcome with some adaptation and resourcefulness. I consider myself quite good at both those things and knowing how it went before gives me an advantage over last time when I didn’t know what to expect.

The big things for which I would prepare in advance would be:

Footwear
The boot the hospital gave me was really effective in that the sole was rigid and the large Velcro-type straps held it on securely, so my foot couldn’t flex. The problem with it was that I’m used to the size of my foot and suddenly I had something twice that size, and the associated weight of the shoe and the dressing, attached to my ankle. I caught the toe of the boot on tarmac or pavements more than once and although the hospital sized it to protect the big toe from impact, it still hurts the top of the joint when you do it and would be better not to.

It’s sweary levels of pain if you do that soon after the operation – in the first week or two at least. I ditched the hospital boot very quickly indoors and preferred soft, floppy slipper boots with a proper sole: a size or two larger than normal to accommodate the bandages. I got ones with the best sole I could to be able to wear them outdoors too and for 99% of the time that I had anything on my feet it was those – and in the very early days the fleecy lining meant my exposed toes didn’t get cold as I couldn’t possibly get a sock over the bandages. I wore the hospital boot for a couple of early shopping trips more as a badge of needing a bit of consideration, since if my foot had been in Uggs it wouldn’t have been as obvious that my mobility was limited and people get tunnel-vision in supermarkets.

I can’t buy them in advance but I know that I will probably want them pretty soon after being discharged, so would be the sort of thing to add into the journey home if I felt well enough. I’ll probably want a pair for immediately afterwards which will get light outside use and will be more about keeping my foot warm (but not too warm) while I recover and keeping the bandages clean until it goes down enough to get a sock on.

When the swelling goes down, and after the dressings have been removed I’ll need something larger than normal but smaller than before, as it’s uncomfortable when your foot moves around too much inside the boot as you walk and you increase the risk of hurting yourself. I gave the first pair to my sister as they only got light wear before becoming too big but because I got more active as I healed, the second pair ended up in the bin in holes so I know it’s not worth spending lots of money on them.

Supermarkets often have cheap ones, as do most clothing stores on the average High Street. Uggs are fine but really short ones only as I couldn’t get my foot down the leg of any normal mid-calf length boot I tried to even see if the foot would fit. Trying also hurt and made it throb more.¬†Caveat below.

Caveat: I had my surgery when the weather was cool and so knitted-style ankle-height slipper boots and fake Uggs (fUggs?) were plentiful, although not so many places stocked ladies size 9s since that’s massive for girls. If I was having the surgery in warmer weather it would undo the work of the icing and elevation as my bandaged and padded foot would definitely get too hot. I can’t think of a light enough alternative but definitely wouldn’t want to rely on the hospital issue boot for the whole time and couldn’t after ditching crutches as the sole has practically no flex in it at all.

Despite the hazards of ice (and I did hurt myself walking on icy pavements) I’d rather be better prepared about getting food in or having stuff delivered to me than have the operation in the warmer months, I think. You can get a monthly smart pass for more than one supermarket so online grocery orders are delivered free on certain days of the week for a small monthly fee. The only down side there is the minimum order value, but family would also pitch in if I let them and told them I needed some help.

Crutches
I got a really thorough lesson at the hospital in how to use them the safest way, to minimise the strain on my upper body, but no matter how little you weigh, your hands will hurt because of the pressure being exerted on the palms and obviously if you are heavier then you’re going to feel it probably more. You get given crutches but the handles always seem to be just the hard, moulded plastic, which was really uncomfortable even when only used for short periods of time, although there are things which can be done to make them more comfortable. I was on crutches a couple of times as a kid with torn ligaments, and back then we padded the handles with medical padding (that pink foam stuff you can make slings from that you cut to size) and taped it on, and palms were toughened with surgical spirit.

Taped-on padding is better than nothing but it doesn’t entirely solve the problem and you have to keep checking that it’s on securely as if the tape slips you can end up hurting yourself as your hand flies off the handle and the padding with it. The crutch flies in the opposite direction and almost always hits a small child or a puppy or something you feel bad about and then you hurt your injured whatever and let out a guttural cry of pain akin to that which I imagine would be made by a goose gargling jelly whilst sat on a wobble board. Everybody cries. Best avoided.

After my surgery I discovered the more recent invention of gel padded neoprene gloves for cycling. The amount of padding varies and I was limited to what I found in my local Halfords (I’d been thinking padded handlebar grips might be a thing) on the way back from the hospital. My hands aren’t affected by the surgery so this time around I’d find a better padded pair and sort that out as soon as I got a surgery date and take them with me to the hospital. They’re ideal because they have velcro straps on the wrist and fit securely, while not covering your fingertips. Skiing or snowboarding gloves might be an option if you could expose your fingers, so I’d do some research before I purchased, given that I’d have a bit more time and could find the best price. The ones I bought were ¬£20 and had to be replaced by a pair with better padding within 48 hours. That was another ¬£20. I could have spent a lot less if I hadn’t been restricted to what was in front of me there and then.

Finances
Anyone with an ongoing condition that affects their wellbeing will know how it chips away at your finances as you are forced to pay more than you need to, in order to obtain fast relief for an ailment. The cheilectomy cost around ¬£150 in terms of things I bought to make my life easier, online shopping delivery fees that I wouldn’t usually have incurred and pre-prepared convenience meals, which all added up. I consider only ¬£20 of it was wasted (on the crap gloves) so when I have the surgery again it’s likely that all those things would need to be obtained and I’d like to keep the cost of that as low as possible.

Peas
At the hospital I was told the ideal thing to use to ice my foot (which I had to do regularly) was a bag of frozen peas wrapped in a tea towel or two, or inside a pillowcase. My parents were all out of peas, but I can confirm frozen sweetcorn works just as well, although it costs more, so I’ll downgrade next time. I will buy a big bag of the cheapest frozen peas I can find, ahead of my operation.

Since they keep going in and out of the freezer it’s important you mark them in some way to make it easily identifiable so nobody ends up eating them. ‘Foot peas’: my sisters would have a field day! Last time, it so happened that mum had blue freezer food bags so we just stuck the bag inside a blue one and tied a knot and wrote on the label. Mocking averted. I wrapped the peas, in their freezer bag, in a small bath towel and put that inside a pillowcase. Duly prepared: the peas would be draped over my elevated foot.

Peas are quite good, they drape well, which is handy if you’re trying to ice something like the top and side of your foot. You can also adjust the weight distribution, which helps when the wound is at its most sensitive in the days immediately afterwards as you need to ice it from the day you get home. Just keep them flat in the freezer and break up any clumps before applying them. Don’t try and avoid having to work your core muscles when you sit up to put the frozen veg on your foot. Yes, you probably can land it in the perfect position for an icing session, tossed from your prone position on the sofa. The only thing is that a bag of frozen sweetcorn weighs a kilo and you just lobbed it onto your newly-operated-upon foot. You idiot.

There are loads more things which I could do differently or which I would know I’d need for my second surgery but, as always, this post is enormous. I’ve been quite detailed because this was the sort of information I looked for online before the first one and there wasn’t much about. I read lots from hospitals so I knew that my foot would need icing, but the peas thing would have been good to know and we would have been better prepared.

Having been slipper shopping, glove shopping and had something to eat on the way back from the hospital I was pretty shattered and if everything I needed had been to hand and I’d known the best way to prop my foot up so that it was supported and comfortable it would be saved me a bit of throbbing and discomfort as stuff protested. Not to mention piles of collapsing cushions and one that actually shot out across the living room and outraged my parents’ cat, who was already sulking that I was taking up the entire sofa. So that’s why it’s long.

If anyone has any specific questions, I’m happy to talk about what I did or would do differently next time if you leave a comment, rather than try and split this up.

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About SAM2.0

You'll want me on your team for the Zombie Apocalypse.
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One Response to National Arthritis Week: Learning to listen and learn.

  1. I wish you all the best. DO keep us posted with news about what the doctor says.

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