Getting Back Into It!

I’d put off writing about my IMPROVEMENTS until I was reasonably sure I was staying on track! I’ve reached the point I’m reasonably sure! If you are catching up, please read A New Diagnosis: and Other New Stuff to understand recent events.

One thing I have learnt is often when we are in the midst of an absolute crap time, we don’t realise just how bad it was until we are out the other side. To give you an example, last week I started swimming again. Given how bad my shoulders had been, there had been no swimming for quite some time. I didn’t realise how long: when I looked back in my Garmin records, I had swum twice in 2023 and not at all in 2024. Had you asked me, I would not have thought it was that long. Lifting weights wasn’t quite as bad, but almost. I’d lived most of those two years, off and on, taking prednisolone and Celebrex. Earlier this year I had two rounds of steroid shots in each shoulder. Of course, during that time I’d also had my second knee replaced and an ankle fused.

The biggest problem had been the inflammatory stuff though, not the surgeries. At one point I had sore shoulders, fingers, wrists, elbows, the unoperated ankle and my neck and TMJ played up as well from time to time. Even my knees were painful at times – after all, after knees are relaced, the original muscles, tendons and ligaments are still there for any inflammatory disease to attack. My blood pressure (BP) was also up.

I am being VERY CAREFUL! Once I realised how much I hadn’t done, I knew I had to be slow and steady. Follow your own advice, Robyn! I had kept walking though. In fact August 2024 was my best walking month ever (well, since I started recording steps) and that only happened because a friend on BlueSky challenged me. But the upper body was a nightmare.

Personal Step records per Garmin. Most steps in a Month: 317,557 31/8/2024

To put some dates around this, my first injection of my new medication was on October 16. A few weeks of loading (weekly) injections, then fortnightly. Yesterday was the eight week mark. I’d said I wasn’t going to be sure about progress until about the middle of December as when I first started I had the previous medication still in my system (presumably it was doing something, even if not much) and was on loading doses of the new medication. By now the old med will be washed out of my system and I’m on the standard injection regime, fortnightly.

One BIG plus? NO Celebrex! YAY! Looking back on my symptom diary, I assessed myself as feeling 15% better the morning after the first injection. I’d noted specifically that elbows and fingers were not as bad. Since then, constant improvement. I have not taken any major pain medication either. The odd Panadol Osteo for my back, which is not surprising given I hadn’t been able to keep up my posterior chain strength for the osteoarthritis.

I did a couple of very tentative gym visits in November to see how my body would react, than on December 1 I started back with a strategy.

Before you look at these numbers please bear in mind for some readers (e.g. healthy young weightlifters) these numbers will look terrible. To a chronically ill person of probably any age, these numbers may look like a bridge too far. And there will be people to whom the numbers look achievable or where they are at or they are already above. To those starting out, DO NOT rush in where angels fear to tread. Seek professional guidance if you can. Read my Pacing articles. Remember, I’m qualified to guide myself AND I’ve had 10 years practice at reading my body. Just because I’m doing something doesn’t mean you should – but it doesn’t mean you should not either. It isn’t really the numbers themselves that are important here – it is the fact I am improving! That’s the important bit.

Yes, to me the kgs look awful! But this is what (re)starting from scratch looks like, so I’m being transparent!

At the moment I am lifting weights every third day. By December 10 I had improved a few things! I did get pec dec on the other two days, just, of course, not the day I’m using here. I’m halfway back to my PB leg press of 160 kg. That is my PB since I’ve been chronically ill, not PB ever. I prefer to only compare within my health status – comparing to a healthy me is unfair and somewhat demoralising, so best not to do it.

I also got back in the pool. Given my shoulders had been SO BAD earlier in the year I am being very careful. I did 10 laps of the 25 metre pool, so 250 metres. The hardest part I found was my breathing! So long without swimming and I was struggling. Breathing during breast stroke was OK, but breathing during front crawl (commonly called freestyle) was a challenge. Today I swam again and my breathing was better. I’d like to swim more often, but lane availability is scarce, sadly. Am looking into how I can schedule more swimming without getting to the pool at 5:45 am – that is NOT a good time for people like me due to morning stiffness. The 50 metre pool has more availability, but until my breathing improves I don’t want to risk it. Very embarrassing to have to stop halfway down the pool.

In summary, I am very happy! My fingers are still a bit bothersome, but manageable. The wrists need strengthening – I could do heavier bicep curls, for example, as the biceps are fine – but the wrists get grumpy if I up the weight too much at the moment. There is improvement though and that is what counts. I’m not trying to head for the Olympics, just maintain and improve mobility and strength. My BP is back to normal, I’ve lost weight and my brain aneurysm has shrunk – a few very nice added benefits!

Robyn Dunphy1 Comment
Magpie

Exercising in Summer When You Are Heat Sensitive

Many of us with chronic conditions are in the unfortunate situation of needing exercise yet at the same time, we are heat sensitive (sensitive is an understatement in my view, but it is what it is). Exercise makes us hot – or at least warmer than normal, depending on the intensity of our routines. How can we get through summer and keep up our exercise regime? We need to keep pain and stiffness away!

For those of us not native to Australian heat, it may be even more challenging. Well before I got sick, way back in 1974, I arrived in Melbourne on a February day. 38 degrees Celsius. Up until that point in my life, 23 degrees was a warm day! I thought I’d landed in Hades! I had a girlfriend living in Adelaide at the time whom I visited. If my memory serves, over there it was 43 degrees. I remember lying on her kitchen tiles to try to keep cool.

Earlier today I saw the magpie above, pictured here keeping cool under the protection of the leaves, with beak open and wings lifted from his body to maximise heat loss. I missed that image, but was pleased to see him looking cooler.

Over the years I had somewhat acclimatised, until I got sick. For many of us, heat intolerance/sensitivity is entirely new, so how best to cope?

Ensure Your Gym is Properly Cooled

This gives you some flexibility with staying active. Today, I will be walking inside, not outside. Treadmills are not my preference, I much prefer walking outside, but I found even walking at 6 pm last night uncomfortable and we are nowhere near summer yet.

Allow yourself to cool down before you venture outside.

Swim

If you can, swimming is a great exercise and the environment is cool. Getting to and from the pool may not be so cool, but with good air con in the car and a close car park most of us should manage.

If you have never learnt to swim, think about lessons. In addition to the physical benefits, swimming has been shown to have mental health benefits, so important to those of us managing chronic illness.

You may need to invest in a rashie for adequate UV protection depending on the time of day you prefer to swim.

Hydrate!

I wrote Hydration Habits – Are You Drinking Enough? recently, so I refer you to that article for the detail. Make sure you hydrate before, during and after exercise.

Cool Your Skin During Exercise

I have lesions on my left arm, the result of medication-related photosensitivity, which become bright red when I exercise. I run my arm under cold water between sets. A wet towel on your face, chest or back can help. Some gyms have large fans facing the cardio equipment – turn them on.

Change Your Routine

In Victoria we are into daylight savings time. Use it to your advantage. The UV danger window has shifted an hour and the evenings are lighter. Check the UV ratings every day, work around it. If walking outside, walk later when it is cooler, or earlier if you are an early riser. Early is not an option for many with chronic conditions as our energy levels seem quite depleted most mornings.

Hydrotherapy Pool

If you have access to a hydrotherapy pool, this can be an alternative to strength workouts in the gym. I find the water temperature a little warm for me personally, but I still do exercises in it. A quick dip in the normal pool to cool off before the trip home is a sensible move, or a cool shower.

Wear Light, Loose Clothing

I’m a minimal clothing person in summer, I always have been. The concept of long-sleeve shirts, rashies in the pool, sunnies and hats was never my style. Now I own long-sleeved shirts of 50+ protection fabric. Of course, while this helps my photosensitivity, it doesn’t help my heat sensitivity as much! Learn to juggle the clothing style, time of exercise and type of exercise that best suits your personality. Why is your personality important? Because we are all more likely to do something we are enjoying. If we HAVE to wear a hat and we hate hats, we will be less likely to go for that walk. Better to change the time so we don’t need the hat.

Summary

It is getting warmer now, so now is the time to experiment and plan for the warmer times coming. Know what you will do on really hot days, so when they arrive you are prepared. Know what temperature is your definite “Don’t leave the house” temperature. What will you do those days, to keep yourself moving? Double your stretches, maybe. Use thera-bands. Do body-weight squats and push-ups at home. Leg lifts with ankle weights. There are options. These ankle weights of mine have 4 x 575 gram removable weights, so super adjustable for home use.

 

If you are in a pacing UP phase, the UP may need to be put on hold on really hot days – it just may not be sensible to have that level of exertion. That’s OK, just keep moving.

When all else fails – get a manicure! At least the salon will be cool.

Manicure

 

Robyn Dunphy1 Comment

Make 2018 YOUR Year for SMART Goals

Seasons Greetings to all! Christmas is 30 or so hours away as I write (for those of us in the southern hemisphere). As the sun sets on 2017, we have an opportunity to re-evaluate our health progress and polish up our plans to get stronger, more active, more mobile and have less pain, less lethargy, better sleep: culminating in a better quality of life in 2018.

If you are still in “I’m thinking about it” mode, take stock over Christmas. What invitations did you turn down because you didn’t feel you could summon the energy required? Would you like to accept those invitations next year? Were you able to do the shopping you wanted to do without crashing in a heap for two days afterwards? Make 2018 the year you make the choice to include moving more into your treatment plans.

Talk to your doctors, get a clear understanding of what benefits you may expect from moving more.

SMART Goals

Now that my recent treatment change is behind me, I’m making more ambitious plans for myself and setting new goals for the new year. SMART goals. SMART goals are used in many walks of life: I’ve seen various wordings used depending on the context. For our purposes, I like the following definitions.

S = Specific. The goal needs to be something specific, not a nebulous idea.

M = Measurable. If we can’t measure our achievements against the goal, we won’t know if we are getting anywhere.

A = Achievable. It has to be achievable. If I set myself a goal of climbing Mt Everest, while both specific and measurable, for me it is not achievable. Swimming a two kilometre session – THAT is achievable.

R = Relevant. You will see realistic often used in this spot, but for our purposes I prefer relevant. We have limitations on our energy, our strength and our time. There is no point in setting goals that are not relevant to what we wish to achieve, which is better quality of life.

T = Timeboxed. There needs to be a time period within which you will achieve this goal. This helps to hold you to account and stay on target.

Let’s give it a try. “My goal is to swim two kilometres.” Is this a SMART goal?

No, it isn’t. While it is specific, measurable, relevant and (I hope) achievable, I have set no time target. “I want to walk more”, while relevant and achievable, is not a measurable goal – “more” could be anything. Walk longer distances or walk more often? Nor is it timeboxed. Walk more by when? 

Let’s have another go at this. “My goal is to swim a two kilometre session by 30 June 2018”. Now I have a SMART goal. I will need a progress plan to reach that goal, so I will need shorter term goals to get there: “My goal is to swim 1.2 kilometres once a week by 28 February 2018”.

That is one of my goals. Yours may well be something along the lines of “I will do my stretches every day for the month of January.” This is specific, measurable, achievable, relevant, timeboxed AND will set you up for the next step in establishing a movement as medicine strategy.

A walking more SMART goal could be very simple. “I will walk for three minutes, five times a day for one week”. At the end of the week a new SMART goal can be set. Remember when setting goals to pace yourself, always pace yourself.

Kyboot

For context, I was on crutches for much of 2014. I was diagnosed at the end of 2014. You can read how I started back to moving more on How tough is it to get moving?. My major goals for 2018 are:

  • Swim a two kilometre session by 30 June 2018.
  • Increase my daily step count to 10,000 steps a day by 30 September 2018.
  • Increase my leg press to 160 kilograms by 30 June 2018. (I was at 140 kg before my treatment change – I have to work back up after dropping back).

As I achieve those, I will set new goals during the year.

Of course, I have one other goal: help others get moving! I am back to normal availability after my recent hiatus, so reach out. It costs nothing to investigate the possibility.

Have a great time over the break! Stay safe!

Robyn Dunphy3 Comments