Rheumatoid Arthritis - Finding and maintaining your mojo

So, I'm tired because I'm sleeping badly - Dragon Dad is away, which isn't helping. I'm sore, from the dropping off of the bio pre-infusion. I had the infusion on Wednesday, so now I have the nasty side effect headache - and a drug induced headache doesn't respond to more drugs...so no point in piling on the Panadol.

What to do? 

What I FEEL like doing is just curling up and vegging. And, to be honest, there has been a bit of that. On my own, I don't have to think about meals in the same way. I still haven't really got involved in too much since the move, so there are very few places I have to be at any given time. My work is freelance, and I've only got one piece to get done at the moment and that's not due til the 23rd.

Can you see the issue here though?

I can, and there's a part of my brain that's fighting my inclination to just veg all the time away while Dragon Dad isn't here. He's a great one for hauling me out for a drive, to see a movie - basically, get out of the house. Right now, that feels like a massive effort - and therein lies the problem. 

One of the most insidious things about managing life with a chronic illness is to give in to the lethargy, fatigue, pain, etc, and just let your world shrink down to the confines of  your house. There are times when that's entirely valid - during a bad flare, there's no point in trying to be a superhuman, and bash your way through normal activities. That just exacerbates the flare and sets you up for a mighty crash. Keeping moving gently though, that's important, because the body needs to move for the circulation to be stimulated - and that helps ease the inflammation a bit. And it also means you can get to the end of the day without feeling like you've wasted it entirely - and that's really important for self esteem. 

For these indeterminate middle of the road 'blah' days when you just don't FEEL like being bright eyed and bushy tailed...what then? Well, ultimately, unless you really want your life to shrink to the confines of your house, it's really important to try and make some goals for the day. They don't have to be huge. A friend and I compared notes yesterday and realised we'd both managed to achieve a whole two things each - but we decided that that made us awesome! Which made us laugh - which is good, because the endorphins that laughter stimulates are the body's natural pain killers, and any time you can get a good rush of those is a good time. 

Today, I got myself out into the really yucky weather - although, all the rain meant I didn't have to muck around with hoses watering the garden so I wasn't really that upset by it - and had a coffee at a place I've recently discovered before heading into the supermarket to pick up some basic groceries. I've mostly been grazing, so I didn't really need much, but the cats' food was low - and believe, me, there's a LOT of motivation to keep their food stocked up because two hungry Siamese are loud! The other thing I promised myself I'd do was write a blog post - hello! Casting around for what to write I kept hitting walls - until I realised I was in a funk and THAT was my topic. 

So, some thoughts on how to avoid the funks, and the cycle of doing less and less until the day you realise you have no life - which is beyond depressing...

• Start a project. It might be craft of some kind, or writing. My current new thing is the photo challenge I wrote about recently, and if you drop by the Dragon Mother Facebook page, you'll see the photos I'm posting daily. What it does for me at the moment is to force me to think creatively about the things around me so I can find something to photograph that fits the daily prompt. It's good for my creativity, makes me think outside the box, and it's also a lot of fun seeing how other people respond to the same prompt.
• Do some exercise. YES, exercise. I'm no gym junkie...so if I can manage it, anyone can! My shoulders are slowly improving a bit, so I should be able to head back to the pool soon and see how much ground I have to make up. In the meantime, I've been doing stretches and exercises at home - partly prompted by my neck going out again and I realised I'd not been doing the preventative exercises for that. Mea culpa - back to that. If you have a dog, you have the perfect opportunity to get out for a walk every day. I could put the harnesses on the cats and see how far we get, but I don't think they'd like it very much, so we won't go there...
• Cook. Get in the kitchen and make something nice. Cooking becomes a chore when we find ourselves just punching out meal after meal for others. Think about what you might like to eat, then shop for and cook that. Make a batch of biscuits or try out a new dessert recipe. Whatever you make, use it as a reminder that the kitchen can be fun.
• Invite a friend over or arrange a coffee meet up. Make it for a week or so ahead of time so you have something to look forward to. Dragon Dad is a creature of impulse. Me, I like having things in the calendar coming up, because for me, a lot of the fun is in the anticipation.
• Play with your kids, if you still have kids at home. The boys and I used to have play days, when we'd build a fort using the furniture, or get the board games and cards out, or all sit down with the Lego. No.1 was a dab hand with a cardboard box too, so making a racing car for No. 2 or creating something else was often something we could all contribute to.
• Try something you wouldn't usually do. When I have this conversation with people and try to suggest ideas, I'm often met with lots of, 'I don't like ....' Well. Maybe you didn't enjoy that one time when you tried whatever it was. Or you didn't enjoy the people you did it with - but you might find another attempt with different people has different results. And if it does involve a group, don't let the fact that you might not always make it because of the RA stop you getting involved. Everyone has reasons to not make a regular activity - and they still sign up. So, that book group, or craft class, or whatever it is...give it a shot.
• Most of all, make plans - make making plans a habit. It's far too easy to end up with the only things in your diary being doctors' appointments and medical tests. That's pretty deadly. Think about the stuff you enjoy doing and find ways to keep doing them. You may well have to adapt how and what you do, to be able to manage both physically and financially. That's OK. There will be ways, you just have to find them. Renoir had RA, and kept painting by tying paintbrushes to his hands - if you look at the works done late in his life, and compare them to the early pieces, you'll see the difference. The late ones are much looser. 

You can see, I hope, what I'm attempting to put across? Don't give up on living. We're a long time dead. And until then, there's a life to be lived, and the shape of that life is up to us...

Gratuitous cat photo, because I can, and because this blog post was written on my laptop, on my lap, with this beautiful company!

Rheumatoid Arthritis - working the systems...

Remember my recent post, when my chemists were absolute heroes? Read it HERE. Well, following up on that, they called me last week to let me know that the drug had been ordered, and delivered, and they were holding it until I collected it.  

 

My next infusion is due next Tuesday. In Sydney, I had my infusions at a big public hospital, and once referred there by my rheumatologist, the making of appointments happened within the infusion unit. Costs were taken care of by Medicare, so all I had to do was periodically flash my Medicare card, and surrender my appointment card for updating.

HERE, I'm working via the private system. I go to a private hospital for the infusion and am admitted as a day procedure patient - for which my private health insurance picks up the tab. The hospital and staff have been great, as has my insurance company. The only time there's been a glitch was the last infusion with the stuff up from the drug company.

Until now. I had a sudden niggle the other day that because the doctor had booked me in to the hospital and set up the appointments, and it was private, and that this month is the first dose of the new prescription (they last six months), unless there was a standing order for the doctor, there might not be a booking for me on Tuesday... 

I called the doctor's rooms last week, and got no one. I knew he was going to be overseas over the break, so assumed that there was no one in the rooms. Made a note, and tried again today and got the receptionist. She went through my file but couldn't find anything. So I called the hospital, which involved a lot of being put on hold, and then eventually waiting for a call back. That's just happened.

There's no standing order. I do need another set of appointments to be set up. That has to be authorised by the doctor. The infusion is due on Tuesday, and he'll be in his rooms - at that hospital, as it happens - but not until the afternoon on Tuesday. So that's the first time he'll get the note asking for the new run of appointments, which means the likelihood is I'll have to wait until Wednesday for the infusion. 

GAH!

Ostensibly, it'll be a day late. But due to last month's debacle, that one was a day late so Wednesday will be the exact four week mark. So it's no great drama. I'm just kicking myself that I didn't think of it last month, before the doctor went away, when a simple phone call would have been enough to rectify the situation. And I'm also deeply thankful for when the infusion falls, and that it's going to be near enough. BUT it's been a stressful couple of days of not knowing. And stress isn't a good thing in combination with an autoimmune disease.

Systems. From place to place they can be very different. I need to be on top of figuring that out, in amongst all the other things I do to manage this disease. And people wonder what I do all day?!

Rheumatoid Arthritis and the weather - how does it affect you?

Last night was the first night in many that the house was cool enough to sleep properly - and after turfing the cats from the bedroom sometime before dawn (when THEY thought it was time to get up) I slept until the garbage trucks woke me just before 9.30 - most unusual for me to sleep that late... Today is blessedly cool after many days of extreme temperatures. And I ache.

I had fairly usual pain levels during the heat wave, although the lack of sleep and general lethargy extreme heat brings made the days and nights difficult. And probably by tomorrow, I'll be back to my 'normal' pain levels again. But it's the big, sudden temperature drop that is making me very uncomfortable today. My brain is with me - courtesy of the extra sleep last night - but my body is most unhappy.

It's something I've been struggling with since the interstate move, and has brought memories of similar ups and downs that were my norm last time I lived this far south, prior to the move to Sydney. Sydney can, and does, get very hot - and extremely humid. But it tends to build up gradually to extremes, and drop a little more gradually back to normal too. There are odd drops, but they're less frequent. Here in Melbourne, it's quite normal for the daily temperatures to shift ten to fifteen degrees from one day to the next and that plays havoc with my RA. 

People say to me, fairly constantly, through the winter, "This cold weather must make your arthritis so much worse, you poor thing," and in summer, "You must be feeling so much better now it's hot." Thing is, as long as the temperature is reasonably consistent and any shift from hot to cold happens gradually, I'm fine. In general, I prefer the winter to hot summers - it's relatively easy to keep warm, but it's much harder to stay comfortable in the heat. The extreme and abrupt changes, particularly those that go from hot to cold by a big margin, are what give me the most grief. The next week, while not getting as hot overall, will give me two big drops, so I'm guessing it's going to all stay a bit uncomfortable as there won't be enough days in a row where it's consistent enough to really adjust.

What happens with everyone else? How do you manage with weather changes and temperatures RA-Wise?

When something else happens on top of Rheumatoid Arthritis

One of the nastier characteristics of RA is the chronic pain, which can vary from person to person, depending on the level of disease activity and how many joints are involved. At this stage, my RA is sort of under control with both DMARDs and the biologic, but it's certainly not in remission, and I'm still taking significantly large doses of pain meds regularly, in order to maintain function and some kind of a life. So, it's been possible to get that to a reasonably level thing, day to day - not pain free, but with it damped down enough to get out and do something each day so I don't go completely nuts staring at the wall. That's all well and good, but it all goes to hell in a handcart when something else goes wrong. 

When I was eighteen, well before any hint of RA, my parents owned a house in a seaside suburb of the city where I went to university. It had a pool in the backyard - the first time we'd ever lived with a pool. It wasn't fancy - an above ground pool that had been set into a deck which, because the block sloped a little bit, was at the level of the patio outside the back of the house. It wasn't very deep either, but deep enough to splash around in and cool off in the stinking summers that happen there. NOT deep enough to tumble in off the edge and land headfirst on the bottom without damage. 

(Not my neck...)

It could have been worse. I could have broken my neck. I didn't, but I did all sorts of soft tissue damage that took a very long time to heal, and even then, not completely. That's the thing with soft tissue damage. Often, a cleanly broken bone (perhaps not in the neck!) is a better situation than wrecked tendons and ligaments. Set well, bones usually heal completely - not so the soft tissue. The very young physio I saw at the time was a bit awkward, as was I at eighteen. Trying to explain it, he said that my build was part of the problem - I'm tall, but very finely boned, so my vertebrae don't hold together as tightly as they might, and with the damage to the ligaments and tendons, that was exacerbated. I was - as he put it - 'loose'. It's been a good story since, but at the time it was odds on which of us was blushing the most! Ultimately, the only thing I could do was keep the muscles as strong as possible, to make up for the damage done in the accident. 

I spent time in and out of soft collars, as it would go out horribly easily and then jam. I saw so many physiotherapists, massage therapists, different doctors. Nothing really helped. And then, years later - post the RA diagnosis, but while the disease was still relatively mild - I was rear ended in traffic and had a bad whiplash injury. I spent months in a collar that time. I found a really good physio who managed to settle it, eventually, but the damage was well and truly done, and it's been an ongoing issue ever since. 

There's no predictability with it - it can be good for ages, and then I wake up one morning and I can't move. The pain is excruciating - sending daggers down my arms and through my thoracic area, and I can't turn my head. One of the early times it happened in Sydney, I got lucky. Rang work to say I couldn't come in, and called the physio practice I'd been too before for a different injury, only I got a different practitioner. And she did something no other physio had ever done. She got it sorted and mobile in record time, AND she gave me exercises I could do to prevent it jamming again. If I caught it at the niggling stage, I could do those, and settle it again. There was only one other time that I woke up with it completely jammed, and again, she fixed it, and told me to do the exercises regularly. 

I haven't been doing them. I forget... And the day before yesterday I woke up and was in trouble. It's been two days now. I'm doing the exercises hourly, and they ease it a bit each time, but I think it's jamming anyway. Which means I'll need to find another physio here... I have a referral from an acquaintance for one who sounds as if he works similarly to my miracle worker. Time to find out.

In the meantime, I have limited movement, and a lot of pain. Severe, acute pain that's nauseating - literally. If I move wrong, it's blinding and sharp and my stomach heaves. That's the thing with pain - and not many people understand it. There's not a single type of pain. There are many different types of pain, and given that I have chronic pain from the RA - and even with that, there are different types of pain - having this happen is a nasty reminder that there are yet more in the pain arsenal that can bring me undone. I could ramp my usual pain meds right up - but the reality is, it's unlikely that they'd help this situation with my neck, because I have things out of place, and nerves being crunched, so every time I move, it's going to happen - I'd only not feel it if I knocked myself out completely, which wouldn't really be a sensible thing to do! 

It WILL pass. I know that. It's just not passing very quickly, and is obviously going to require intervention. At least the calendar is going back to normal, and I have half a chance of finding the phsyio in when I call. I hope so. I can't take this neck to just anyone. I'd love a teleport so I could whizz back to Sydney quickly to see my miracle worker - and talk knitting, because that's what we do - but that's not possible. Hopefully, they can talk - she and this new guy. 

Who is The Original Dragon Mother?

I've noticed over the last month or so that I'm suddenly getting a lot more traffic on the blog - and I really do mean a LOT! Somewhere along the line, it's moved up on search engine pages or something, and there are a lot more people following along - here and on the Facebook page. 

It did strike me, especially since I've just jumped into Fat Mum Slim's Photo a Day challenge, so the Facebook page now has photos going up regularly, that newcomers might be curious as to the somewhat eclectic nature of the blog and FB page... 

Initially, I started the blog to give myself a place to explore parenting concepts as I saw them changing, quite some time after my own two boys were no longer living with me, but after I'd acquired a third boy, in the person of Dragon Dad's son. I'd always felt a bit out of step with my parenting style with my own children, being - as my friends often told me - really old-fashioned...and they weren't exactly being complimentary! Coming face to face, in my own home - after Dragon Dad and I moved in together - with another adolescent who was the product of a very different parenting style to my own was, at times, challenging. Finding my own way through that to be a step parent, without just falling in with decisions that I sometimes disagreed with was very difficult. So, I started the blog. I had to vent SOMEWHERE. Along the way, my No.2 son stumbled across it, and we had some interesting conversations regarding the content of some posts - as can be imagined. The three boys are now 31, 25 and 21, so definitely not children any more. But you never stop being a parent, and I don't think aging and observing younger children around us necessarily changes our parenting perspectives. So I do continue to write about parenting - from the perspective of my own experience and what I see now.

Then I got involved with chronic illness communities online. A 24 year 'veteran' of Rheumatoid Arthritis, initially mild, and now severe, I found I had things to say in that context. My first post that touched on RA was about parenting when you have a chronic illness, because I kept seeing posts from women, particularly, who still had kids at home and were struggling to be the parents they thought they 'should' be...and felt they were letting their children down by being sick. Eventually, I had to write about that. My youngest knows nothing different - I was diagnosed while he was still a baby. No.1 had to make some adjustments - he was a bit over 7 at that time. But I don't believe they were deprived in their childhoods due to my illness. That post lead to more RA themed posts, and then I participated in the RA Blog Week, hosted by my good online friend Rick's blog, RA Diabetes. That lead to blogging for Creaky Joints for a while, and then when I finished there, I figured I'd keep going, sometimes exploring RA based issues in the course of my personal writing. 

With a past that includes professional cooking, I'm also a bit of a foodie. So there have been the odd recipe and food-based posts too. They're fun. Sometimes I've written them due to requests from friends and readers, but often it's just an impulse when something feels like it should go here. 

Ultimately, this is the place where I do my personal writing. Any paid work I get as a writer tends to be fairly humdrum. Unfortunately, in the current financial climate, the arts journals where I used to get a lot of work published can't afford to pay freelance writers, so outside writing for those is supplied largely by those who can afford to write for free - I can't. But it means that the subject matter here is growing more diverse, and that's fine. We're none of us single-faceted. I am a parent, yes, I have RA, and yes, I'm a foodie, but none of those things define me entirely. I have other interests and other drivers, and as the blog continues, I daresay it will grow yet more diverse. There are other bloggers who do focus solely on those things, and that's fine, and many of them are doing a marvelous job, but it's not a direction I want to take. It's all in the interests of being well-rounded, and balanced. The blog will continue to grow ever more eclectic, much like my decorating, wardrobe and book collection!

So, welcome to all the newcomers - it's lovely to have you here, and please do comment if you feel moved to do so. It's always nice to have a conversation.