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Archive for May, 2012

Down To One Crutch!

Had my physio session this afternoon and practised lots of walking with just the one crutch. Even after just a week of stability exercises I have lost a lot of my wobble and so I’m now allowed to get about shorter distances on just the one crutch ūüôā This means I’ll finally be able to carry things again, open doors and generally have a hand free to just ‘do stuff’.

Jo was really pleased but she is already thinking ahead to the next step – sticks. In fact, I had a go at using Fisher sticks (?) between the parallel bars; these are basically just sticks with a ¬†flat, moulded handle that fits to the palm of your hand. I wasn’t too keen on how it felt because it is a lot more wobbly than with crutches. My hips felt the difference too, since you can’t put much weight through your arms with the Fisher sticks and so bear it all through your hips/legs, which is normal of course, but will take me some getting used to.

She’s not intending for me to use the Fisher sticks any time soon, but having a play now will give me chance to get used to them while they are so different. By the time I am ready for them, I’ll be a pro!

But for now, I’m just happy to get down to one crutch and to be able to celebrate by making myself a cup of tea and carrying it to the sofa myself!

L

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The weather has been glorious here for the past week, with cloudless blue skies and sunshine. It is so tempting to rush out and lie in it all day; but anyone with Still’s Disease, particularly those on certain medications, need to be careful in the sun.

Why?

Well firstly, many people with Still’s Disease find that too much sun/heat can actually make their symptoms worse. Others find that it helps ease their symptoms, but it is worth knowing the risk so you can monitor any patterns you find in your own condition. Humidity has a big part to play too, so keep an eye on that.¬†Personally, I tend to feel better in the summer months, but if I am exposed to too much heat it can trigger the Still’s rash and make my temperature wacky. Eg. As it becomes cooler in the evening I can feel freezing cold and shiver like crazy, even though it is still warm – a kind of exaggerated reaction to the change in temperature.

Secondly, as mentioned before, many of the immuno-suppressant medications used to treat Still’s Disease increase your risk of developing skin cancers. This is because they act on fast growing cells,¬†including¬†those that provide the protective pigment melanin in your skin. Ever noticed your skin is paler, doesn’t tan as easily or burns more easily? We are much more susceptible to the damaging rays of the sun.

But all this doesn’t mean we can’t enjoy it; sunlight provides us with the all important vitamin D after all, as well as fresh air and a sense of freedom that are all good for general well-being. Nobody wants to be cooped up indoors all day. So what can we do to enjoy the sunshine safely?:

  1. Stay out of the sun/heat at the height of the day (11.00am – 3.00pm usually).
  2. Stay in the shade as much as possible.
  3. Wear a¬†high factor sun cream. Factor 50 if possible. I use children’s sun cream, our skin is as delicate as theirs so why not!
  4. Keep hydrated by drinking plenty of water.
  5. Wear cool, loose fitting clothes but try and keep vulnerable areas covered Рfeet,  shoulders, neck etc.
  6. Wear a hat and/or sunglasses to protect your eyes.
  7. Make sure you are comfortable – choose comfy sun loungers over wooden benches.
  8. Don’t overdo things! No matter how tempting it is, pace yourself.
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One final pointer and one I have only learnt myself very recently – Eat safely. What do I mean by that? Well, (here at least) sunny days usually mean that the¬†barbecue¬†comes out. We all know that there are risks involved with making sure that BBQ food is cooked properly and so on. But did you know that this is especially true for immuno-suppressed people? We are majorly at risk of developing stomach upsets from undercooked food, raw foods, foods containing raw eggs or foods that haven’t been refrigerated properly – and these stomach upsets can quickly overwhelm our immune systems and become very serious. As with any infection, if this happens you may need to stop medication while you recover, which could lead to a Still’s flare.

That doesn’t mean you can’t enjoy a nice sausage barm, just be extra careful it’s been cooked according to guidelines.

It might seem a lot of fuss but it’s all common sense really and being aware of these things should mean you are able to make the most of the warm, sunny days that are (hopefully!) on the horizon. As I said before, it is¬†good to spend time outside in nice weather. It does wonders for your spirit, triggering the release of natural endorphins, which lift mood and act as a natural pain killer. Plus there is something soothing about being outside and feeling ‘at one’ with nature; with only the birds and the breeze for company.

So get out there and enjoy the sunshine! ūüôā

L

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One of the symptoms / risk factors that often gets overlooked in people with Still’s Disease is inflammation of eye, which can lead to future eyesight problems and even blindness. I’m sure none of us would want to have to deal with that on top of everything else, so why is it given so little attention?

Eye involvement seems to be more common in younger children with Still’s, in some progressing so quickly that they soon lose their vision entirely and in others, so severe that it requires additional medication to treat it, on top of the cocktail of meds they already take. Eye problems can even appear before other symptoms of childhood Still’s Disease develop and could provide an early indication of the disease. More often, it follows the same pattern as joint / systemic flares, but eye involvement can continue once these symptoms have subsided too.

And eye problems can also affect adults with Still’s Disease. As well as the risks the disease itself brings, there are the additional risk factors of age, ‘normal’ degeneration, high blood pressure, type II Diabetes and then of course medication since many medications used to treat Still’s – Prednisolone being a major player here – increase your risk¬†of developing glaucoma, uveitis,¬†iritis, visual disturbance etc.

Unfortunately, eye involvement does not always obvious present itself with obvious symptoms and it can be hard to detect, especially in children, meaning that damage can be done before you even know you’re affected. Sometimes there may be some visual disturbances – flashes, floaters or blurred vision – but it is generally not painful and there are no outward signs of inflammation such as redness, although with cataracts there may be some cloudiness.

Left untreated many conditions that involve inflammation of the eye can cause scarring and permanent damage to the eye. But how do we become aware of and/or prevent this from happening by treating it quickly?

Easy. It is very¬†important that we all get regular check ups on our eyes at the opticians or by an eye ¬†doctor. Most advise at least every six months, especially if you are on long term steroid treatment. This is a painless procedure and will quickly highlight any problems affecting the eye. For some there may be a cost involved but it’s surely a small price to pay to look after your eyesight.

Speaking of which, I had my check-up yesterday. I’d been noticing I had a lot more floaters and tiny sparks in my vision, especially when reading, plus my eyes have been very dry. I wear glasses to use the computer and to read but otherwise my eyes have always been good; I have to be careful though since my dad has recently developed Glaucoma and my aunt has cataracts and Sjrogrens (alongside her Lupus).

My eye exam started with the doctor taking photographs of the back of my eyes. These show the blood vessels in the eye and give a clear view of the optic nerve; any damage to these structures is easy to spot. They then checked the pressure inside my eyes on a machine that blows blasts of air. Yep, it doesn’t half make you jump but it doesn’t hurt I promise. Then she had a good look with various lights and microscopes, before asking me to read the usual test board with each eye. I did better than I expected on this, as I thought my eyesight was getting pretty bad but actually it’s not! My prescription had barely changed and she felt that the visual disturbances were down to changes in my medication, which makes sense. I did treat myself to a new pair of glasses though, considering I’ve had this last pair for about 7 years.

In total it took me about half an hour. I was once again told that it was extremely important to keep up with my eye exams and booked in for my next appointment in six months time.

You can read more about Still’s Disease and Eye involvement here and I will post some further information on specific conditions when I get the chance.

L

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Physio today has been a hard slog but well worth it! I did a lot of work on the parallel bars and managed to start off where I finished last time and progress on from there. Balance and weight bearing were both better, I just needed to work on lifting the left foot more naturally and stop sticking my bum out!

To do this, we did some exercises sitting down. Firstly, she placed a step in front of my chair, quite far away at first, for me to practise lifting my foot up to the step – allowing it to bend from the knee instead of whatever I was doing! Each time I mastered this, she brought the step closer to make it more difficult. Next, She made me roll a football round with my foot on top of it – forwards and backwards, side to side, round in circles. Finally, we had a game of catch.

On trying walking in the parallel bars again after all this I found it much easier and managed to do a few lengths with just one hand. So¬†finally Jo agreed to let me try and walk with just one crutch. With another physio on hand just in case, we set up a chair a short distance away and I aimed to walk to it; but I did even better than that and managed to walk back to the waiting room. I had the occasional wobble and I was glad somebody was behind me, but I’m chuffed that I managed it. Jo was made up too and gave me a big hug, even though she’s the one that’s got me this far.

I was feeling a bit puffed out after all that so we finished up and just sat in the waiting room for five or ten minutes, while I recovered some colour. I’d turned a whiter shade of pale again but it didn’t last long this time. I was still tired when I got home though and fell asleep on the sofa.

My homework this week is to get a ball and play about with the exercises we did today. I wasn’t sure how a game of catch could help me get walking again but apparently it helps strengthen your core muscles as your body readjusts to counterbalance your movements. Plus it is supposed to help retrain your brain so that it forgets the bad habits it has picked up. Whatever the reason, it seems to have helped!

Not quite ready to go with just the one crutch on my own, but getting a helluva lot closer!

Watch this space!

L

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The withdrawal blues have kept at bay this past week and I’m starting to feel more like myself again.

Last night I went to see Phantom of the Opera in Manchester. I knew it was going to be a late night, that there might have been some difficulty negotiating the the stairs, toilets, seats etc with so many people around, but for once it really didn’t matter at all. I was looking forward to it too much and just very, very excited. Funny how something so simple can change your outlook on a situation.

I’d never seen ‘Phantom’ in any form before, so had read the novel by Gaston Leroux last week for some insight. However, the book is nothing compared to the show. I was absolutely gobsmacked the whole way through and couldn’t take my eyes of the stage. The musical score, storyline, atmosphere and set design were all just amazing; I actually got goosebumps when they sang the Phantom theme. I was reminded of a chapter in the book I recommended recently (Me Before You), where the quadriplegic man goes to a concert (the orchestral kind) and says that he doesn’t just¬†hear¬†the music but¬†feels¬†it as a physical thing. It was that amazing.

In fact, I was so absorbed in the whole thing that I barely noticed it was pushing 1.00am by the time I got home and it’s been a while since I managed to stay awake that late!

Tired today but so worth it.

L

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I came home from Physio with both my crutches yesterday. I was disappointed at first but was told by a fellow Spoonie that I was being a bit hard on myself and I suppose they could be right. I’m just so eager to get rid of the things that I’m pushing myself too far at times. Including at yesterday’s session.¬†It was my first Physio session out of the water and I was really excited to reach this, the next step in getting me back on my feet. We started off by waking up the muscles in my legs, which are still weak, although Jo tells me they should improve dramatically now. Waking up exercises included basic stretches and then lifting heels when lying flat (harder than it sounds and highlighted the difference in strength between my left and right sides). All these things were to prepare me for the parallel bars.

When I told my boyfriend about the parallel bars he had visions of me swinging and flipping like they do in gymnastics but I’m afraid to say this wasn’t the case, (maybe something we can work towards?!). At first we just used them for some weight-bearing exercises, as I’ve understandably fallen into the habit of favouring my right side and am not bearing enough weight through my left side, even though it isn’t painful any more. We used exaggerated leaning to each side, bearing weight on each foot in turn and holding the bars for balance; then some hip wiggling that would have put Ricky Martin to shame. Again, this wakes up muscles that have been asleep for the past four months, reminding them that they can bear weight, as well encouraging me to move more naturally.

Once we’d spent ten minutes working on our leaning and wiggling, Jo told me I was going to walk to her using the parallel bars to support me, instead of the crutches. This was the moment I’d been waiting for, but for some reason I found the bars a lot harder than crutches and made a bit of a mess of my first attempt. After a bit of practise I did manage it, although I’m sure there’s room for improvement. It’s not just about getting from one end to the other, it’s all about posture, correct weight bearing and natural movement. It’s a lot to think about all at once, even though usually we do so automatically!

It must have been hard work because Jo suddenly grabbed a chair and told me to sit; I’d gone white and she’d thought I was going to pass out on her. It was only when I was sat down that I realised my heart was pounding, my hip aching and my head a bit woozy; I think I’d been concentrating so hard I’d somehow blocked it all out. After a rest and some water, I begged Jo to let us carry on but she wouldn’t let me back on the bars; instead, we went back to the bed and worked on some exercises to strengthen up those unused muscles, including a new exercise for my hips. I only managed three reps of this exercise before the muscle gave out and Jo said all the colour had gone from my face again, so she called an end to the session. I was disappointed but feeling rather wobbly, so didn’t argue this time.

She promised me that I’d made a lot of progress but I mustn’t have looked convinced so she went and grabbed one of the physios who first saw me, who said I was looking tons better than I did back then, (about 6 weeks ago). I can’t believe how fast I’ve forgotten just how bad things were and I need to keep reminding myself of that – I’m really lucky to be doing so well and if things carry on the way they have, they’ll only get better.

I might not be rid of the crutches this week, but it will happen.

Patience

L

Useful Links:

Examples of Weight-bearing Hip Exercises (Livestrong)

Further Exercises to Improve Hip Strength

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Today was Hydrotherapy day, the highlight of my week. Don’t get me wrong, it is¬†hard¬†work, but I feel like I am progressing week by week and too see that is a great motivator; plus I love being in the water. I’ve been getting in the pool via the hoist chair, but today Jo (the Physio) said I was looking good and suggested we gave the steps a go. These are very gradual steps down into the pool that span its entire width and there are bars either side to weight bear for hopalongs like me.

It actually took me almost no time at all to get in the pool this way; my balance was good and I felt nice and grounded on my feet, taking some pretty normal steps. Okay, so I was bearing most of my weight through the bars, but it’s still the closest I’ve been to actually walking without the crutches and I think I surprised myself as well as Jo!

The rest of the session was split between 1) my regular resistance exercises – marching, sideways leg stretches and backwards leg stretches as well as a new one involving ‘bum kicks’, with floats attached to provide the resistance. This is harder than it sounds and I did almost ended up being ducked under the water a few times. 2) Walking in the pool with a float for support. I managed a whole width this way AND THEN managed almost another width with no support at all. Yes I looked like a tightrope walker and kept sticking my backside out for some reason (I hope that habit does not transfer to out of the pool walking too) but still, I walked unassisted for the first time in four and a half months ūüėÄ

After all that hard work I was hoisted out the pool – maybe next week I’ll try the steps out too, but we felt I’d made enough progress for one day without wearing myself out too much. It’s surprising just how tiring it is. I’m seeing Jo on Wednesday, for a session out of the pool, and we might even be able to get me down to using just the one crutch then. Both physios at the session say they have seen a vast improvement in my condition since I started, which makes me feel really positive about the new medication. Sometimes I feel like it’s all dragging on too long and I’m not really getting anywhere, so when someone points out the changes they’ve seen in you, it puts things into perspective.

We all agreed  it deserved a celebration, so I treated myself to an ice cream when the ice cream van came round.

Can’t wait for Wednesday now! ūüėÄ

L

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