National Arthritis Week: Living with an ‘old person’s’ condition.

I haven't given up hope that I will wear these again.

I haven’t given up hope that I will wear these again.

I’m not yet 40 years old and I’ve got osteoarthritis in my feet: specifically the big toe joint of each foot. With the benefit of hindsight, I’ve had it in one foot since I was a teenager – I remember it briefly causing me pain when I was wearing ridiculous heels for the first time in school. Obviously, I was a teenager so I ignored it – putting it down to having had my foot trodden on more than once by horses and ponies. I’d never knowingly suffered a break, but assumed it was down to that. I didn’t consider arthritis particularly, since I thought it only affected old people or massively sporty-types who’d worn stuff out and I wasn’t either of those.

Actually, it’s nothing to do with that or my age: it’s probably genetic. My mum, Nan, one of my two sisters and my 20 year-old daughter all have it too. I’m the one worst affected, though, and had surgery on my left foot about 18 months ago.

I’d been thinking about doing a post on arthritis, since it affects how I approach the outdoor stuff, and some of the indoor stuff too. Then I saw a tweet from Good Food magazine saying that this week is National Arthritis Week, talking about the food you should eat to help manage it (if such a thing can be done, although you should eat healthily and try to lose weight if you need to) and that was settled. I’ll write about how I have adapted my garden and will adapt the allotment in another post. These ones are more about my experience with diagnosis and treatment and what can be achieved to make things better.

Symptoms
My symptoms were that my big toe seemed to be stiffening (hallux rigidus) and I was having trouble doing anything that required a flex. (Think: walking, climbing stairs, reaching up for something, squatting down where you lift your heels off the ground – just everything.) I’m an adaptable sort, so I found ways round that, and wore lower heels and spent more time in bare feet or clumpy-but-effective shoes that made me walk like a disgruntled Hobbit. I know there are shoes especially designed for people with arthritis but I don’t want to be wearing the same shoes that my nan wears – not while I have any sort of choice in the matter. I went for Doc Martins, walking boots and other equally clumpy options.

Worse than the loss of flexibility was what I thought for years was a joint that tended to dislocate. It would ‘go out’ randomly: causing a horrible pain that I can only think to compare with that achieved when smashing your funny bone into something hard except it feels like it does at the point of impact the whole time. I am liable to involuntarily scream in pain, turn the air blue and it’s generally unpleasant when it happens. On occasion I’ve taken a step and it’s happened and I’ve gone a bit woozy from it. It hurt even to lie in bed and have the duvet touch it so it also affected how much I could sleep.

Getting Treatment
A little over 2 years ago, I finally mentioned it to my GP after what had been an occasional inconvenience for short periods throughout my teenage and adult life had deteriorated to the point where I couldn’t wear anything other than walking boots or trainers outdoors. Anything with a heel higher than an inch or so was out, as was anything that didn’t have a totally round toe and loads of space round the big toe inside. It also needed to be soft enough not to put pressure on the joint when it was moderately bad. When it was really bad I’d have been lucky to get it into a pair of Uggs without it causing me extreme discomfort and much swearing. On really bad days I just couldn’t leave the house, or even put on a sock without it really hurting, although once it was on it didn’t sustain the discomfort.

No point wearing heels at a festival...

No point wearing heels at a festival…

The footwear was just as attractive as you’re probably imagining and I was stuck with it the whole time. I’m pretty low maintenance on the looks front, really: I can’t be arsed to get up at 5 a.m. to style my hair and paint on a face, or wear stuff that hurts or causes me discomfort on a daily basis. But sometimes it’s nice to be able to dress up and make more of an effort and you can get up as early as you like but if you’re 5′ 4″ tall and shaped like me, walking boots are going to ruin even the most flattering ensemble. Things like having to go to London for work, wearing business clothes and crossing the city became something that required military planning, expense and time.

It was also affecting my daily life: because I couldn’t drive, couldn’t exercise, couldn’t do anything except try not to have to move because putting any pressure on the joint at all was agony. The GP said she’d refer me to a consultant, which she did, and I had an appointment at my local hospital within a few weeks. She didn’t tell me off for being overweight, which I’d assumed she would, and which had also deterred me from going, since nobody really likes being brow-beaten about that sort of thing. Again, my bad: I should’ve got over it and gone anyway as opposed to adding it to the list of reasons to put it off.

Surgical Options
The consultant was a lovely bloke: he had sent me immediately to be x-rayed and immediately confirmed that it was arthritis and that the awful pain was caused by a bony spur on one part of the joint catching on the other and pinching a nerve. The only cure for that, he said was surgery. The only surgery I’d found on the internet was that of fusing the joint, which I didn’t want because of the aforementioned nan shoes. I stupidly lived with it for a lot longer than I should have done and it had a pretty debilitating effect on my health. Ongoing pain and restricted mobility are two pretty fast routes to feeling dreadful and were I to do it again I’d have got help 4 years earlier when it first became a frequent problem.

I tentatively told the consultant that I really didn’t want the joint fused, and asked if there was any way of avoiding surgery. “Oh you don’t need that!” he cheerfully exclaimed. “Trust me, if you get to the stage of needing to have your joint fused, you’ll be begging me to perform the surgery.” Then the man in the expensive-looking suit and brogues gingerly minced his way round the consulting room as he demonstrated that even after having a big toe joint fused, small heels (he demonstrated by going up on his toes a bit – enough for a nice kitten heel at least) were still possible. So, the moral of that part of the story is: don’t be an idiot, go and see a doctor and don’t let a fear of surgery deter you from at least finding out what your options are from someone that isn’t the internet and actually studied these things in a proper medical school.

He then told me that was I needed was a minor operation, done as a day surgery, called a cheilectomy. He would do it under local anaesthetic, blocking all feeling below my knee, I think he said, or perhaps my ankle – that general area, anyway. I can’t say I was hugely keen on the idea of being awake while he chipped bits off me, but he assured me that he thought he could get me to 75% – 80% mobility in that foot again, by about a year after the surgery.

He told me that there was a risk that the surgery could actually make things worse and leave me with more pain than before, but that given my age he strongly believed it was worth that risk for the potential years of increased quality of life I could get. (Plan B if that happened would be to fuse the joint.) My quality of life was clearly important to him: he kept mentioning it. He also mentioned potential complications such as infection, which could make things worse or extend my recovery time. The thought of being able to live relatively normally again overrode the fear and I asked him to add me to the waiting list.

The NHS being what it is, I then got a letter a few weeks later, saying that if I wanted to be seen by that surgeon I would be looking at a significant delay before I could have surgery. They offered me the option to have the procedure at a privately-run clinic, under contract with the NHS. I really liked my consultant and genuinely trusted that he was enthusiastic about getting the best result he possibly could, to give me the maximum benefit, so it wasn’t an easy decision. I had a few weeks to decide, so I weighed it up and decided that I was sick of being so ruled by my stupid big toe and to have the surgery in the private clinic. The decision was helped by knowing that their procedure involved a general anaesthetic, so I wouldn’t know what they were doing to me. I don’t know whether such arrangements help or hurt the health service, but it did mean I got the surgery I needed far earlier than I would otherwise have done, in a spotlessly-clean and apparently incredibly efficient unit.

This was turning into the most enormous post, so if you’re interested in the actual operation, recovery and that sort of thing you can click here.

If you are interested in what I do to make my life easier or to get round things that might pose a problem, click here.

Was it worth it?
A hundred times, yes. It will have an impact on your life as the recovery period and the inability to wear certain shoes after surgery is stuff that all needs to be considered, but I am very glad that I’ve done it. It would probably have been easier initially if I had someone running around and doing stuff for me, but I declined all those offers because I like to prove to myself that I can do things – or to work out how much I can do before I need to ask for help. That said, I have a small house and I arranged things (or got other people to arrange things) the way I needed them to be to make my life as easy as it could possibly be.

I can't wear these often but at least I can still wear them at all.

I can’t wear these often but at least I can still wear them at all.

Round Two
It’s become increasingly clear to me over the course of this year that the other big toe joint, my right one, is going the same way as the left. I couldn’t get to the allotment at the weekend because I couldn’t get shoes on – it was very painful and I couldn’t drive for two days, which is the first time that’s happened with that foot. So, I should really go and see the doctor and start the process and see if 18 months on, I’ll get the same course of treatment on my right foot. I’m not massively looking forward to that, and have been pushing it a little, but this last weekend told me that I do need to do something. One of the reasons I didn’t get treatment was because I didn’t understand what was causing the intense pain. I thought it was a dislocated joint – something that could be realigned with care. Now I know that it’s caused by bone overgrowth, I won’t spend so long before I get it treated, although unless I get another problem within the next couple of weeks I’ll probably start the process after my 40th birthday and Christmas.

During my research on this (I’ve tried to be careful not to give medical advice but wanted to remind myself of the facts) I have found that just 18 months after my surgery, things have moved on already. My cheilectomy left me with a scar of about 3 inches in length along the side of my big toe. I can even get away with wearing a pair of ballet pumps now, without it being really visible, so from a vanity perspective I don’t consider that it’s disfigured me at all. It looks as though some hospitals are doing this as a keyhole-type procedure now, which leaves you with nothing more than 3 small scars of around 3mm each (yes, I mix my measurements constantly) which would be hardly noticeable at all. I think I’m right in saying that a cheilectomy is the same operation that you have to remove bunions, so if you’d got those through wearing crippling footwear you could have the surgery but continue to wear strappy stuff. I believe some people do that sort of thing. Personally I’ll suck up the cosmetic aspects and go for the relief of pain. I’m really not inclined to aggravate things by wearing stuff that common sense dictates is not good for a human foot.

There are different types and causes of arthritis and I don’t pretend to understand them all, but Arthritis UK have a page of advice for young people and their families, which is worth checking out. I may not be a young person now, but my symptoms started when I was 16. I don’t know what could have been done back then, but if nothing else I might have been better educated about what my future options were and sought treatment earlier.

Anyway, a massive post(s) (sorry) but it’s important. If you’re reading this because of the tags and you’re doing the whole looking up your symptoms on the internet thing, pack it in and make a doctor’s appointment. I wish I had, but then I do these things so you don’t have to. 🙂

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About SAM2.0

You'll want me on your team for the Zombie Apocalypse.
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