chronic conditions care courage consistency coaching

Care, Consistency, Courage and Coaching

Chronic Conditions

Care, consistency, courage and coaching are my “4 Cs” of chronic condition management.

Care

There are different types of care. Top of the list is great medical care. You must have a good relationship with your primary care provider (general practitioner, GP). I’m not suggesting you be family friends who go out for dinner (that could be difficult) but you should feel comfortable that your GP “gets” you and that you trust their level of care. This is the medical professional on your team that herds the cats (your specialists) and keeps the information flowing, in a sense the gate-keeper.

Self-care is extremely important. Self-care isn’t all bubble baths and scented candles, although those are nice. Self-care includes doing the things you MUST do to maximise your health, minimise your pain. Making the time to do stretches, walk, swim, lift weights, sleep, eat well: “doing the hard yards” as my father would say. Yes, the other sort of self-care, the time-out, rest, relax: also very important.

Mental health care is extremely important. As I have written about that in “We Need Mental Health as well as Physical Health, I won’t say more here. Reducing stress is part of mental health care.

Being careful is also a form of care. One example I have written about before is changing exercises where necessary. My own example is I no longer do dumbbell chest press because getting off the bench irritates my spine.

Being careful with our body weight is important – for many, weight gain can mean increased pain levels.

breakfast
Breakfast

Consistency

Consistency is paramount. When we were healthy, our bodies could recover from a week or two of no exercise, a night on the booze or day of crap food. Sure, we may have suffered a hangover or the scales may have jumped a kilogram, but we easily recovered from the damage.

Once we have a chronic condition/illness/disease not only are our bodies not as resilient, we are likely on medications that, while doing very good things for us, may also compromise other aspects of our “internal workings”. My own example is my rheumatoid arthritis (RA) medication suppresses my immune system – logical when you think about it, of course, given RA is an autoimmune condition, my own immune system attacking me. This means I have to be super careful not to catch bugs/viruses, as I recently did. I ended up in ED with what felt like a ping-pong ball in my throat.

Exercise, such as stretching and resistance training, will stop your body deconditioning and greatly assist with pain management. However, the gains we make can be lost VERY quickly once our bodies are unwell. Consistency is vital to ensure we maintain our gains and keep building on our achievements. I have discussed exercise in more detail in Doctors and Exercise, so please click that link for a more comprehensive presentation about the importance of exercise.

de-conditioning

During a consultation with my endocrinologist he asked, “Do you take your meds?” Frankly, I was shocked – what a strange thing to ask, I thought, of course I take my medications! He asked because my thyroid was misbehaving again and my blood tests were not within the reference range – again. Clearly some patients don’t take their medications as prescribed.

Most medications for chronic conditions require consistency to be effective. If you feel the dose or the medication isn’t working as it should, TALK TO THE SPECIALIST before changing anything. You may do more harm than good. If the problem is remembering, set alarms in your phone. Some medications can take three or more months to reach the required level of effectiveness.

Be consistent. With medications, exercise, diet, rest, sleep, hydration.

consistent exercise
Consistent daily steps

Even if you have to dance to get there!

Courage

Yes, courage. It takes courage to start AND to keep up the fight. “The cave you fear to enter holds the treasure you seek”. The treasure is maintaining quality of life for as long as possible. For some, the cave is MOVEMENT! It can be hard to think about movement when we are in pain. Or we feel we can’t “keep up” in the gym. Today is my swimming day. The predicted high is 13 Celsius. Do I REALLY want to get into my bathers and hit the pool, or would I prefer chocolate cake and a nip of Bailey’s Irish Cream? Consistency! Courage! Just do it!

leg press

The benefits are worth it. I have avoided a knee replacement and radiofrequency denervation of the lumber spine. Yes, I MAY need both some time in the future (distant future, I hope) but for the moment, I’m good. I’m on no pain medications.

Four years ago I started with four x 5 minute walks a day.

Now a gym session looks like this:

  • 4 sets leg press
  • 3 sets chest press
  • 3 sets shoulder press
  • 1 set body weight squats
  • 3 sets Smith Machine squats
  • 3 sets tricep extensions
  • 3 sets bicep curls
  • 3 sets lat pulldowns
  • 3 sets leg extensions
  • 3 sets pec dec
  • 8 minutes on the rowing machine

I got VERY annoyed recently when I lost muscle strength and had to drop my leg press weight down from 160 kgs. While we still don’t have a medical explanation, I am building back up again, so perhaps it was just a temporary glitch. We have temporary glitches.

I didn’t get to where I am now without care, consistency and courage.

Coaching

Professional athletes all have coaches. They have goals. WE also have goals (hopefully SMART goals)!

Perhaps we need to look at ourselves as endurance QOLs –  Quality of Life is the goal we strive for, not necessarily running 3,100 kilometres in 45 days! Our mental challenge can be just as extreme, even if our physical achievements are not. 8 Steps to Retain/Regain Quality of Life

People are all different, conditions vary greatly. Even so, the sooner you start managing your condition instead of your condition managing you, the better your chances of retaining your quality of life for as long as possible.

Sometimes all that is needed is help to get started. Sometimes a patient may prefer longer term support and encouragement.

Coaching helps the chronic condition patient take control. There is a fifth “C” – Control!

Too often patients feel they are “OK for the moment, I’ll worry about all this later” (when my job is not so stressful/the kids are older/the house is paid off). My advice is don’t wait. Start now to protect your future.

Contact me for a confidential chat as a starting point.

Note this article is intended for chronic condition patients who have a medical clearance or medical advice to exercise. This can be at any level from beginner.

driving

When Treatment Throws Rocks on the Road

Maintaining our upward trajectory in managing our conditions can run into obstacles every now and then, one of those rocks in the road can be a change of treatment. We need to ensure we don’t let our progress to date slide away while at the same time ensuring we give ourselves physical and emotional space to deal with the bumps in the road.

What I have learnt from my own recent experience of changing treatment, is this.

Triple Check Any Timing Advice

You may get different advice from different practitioners involved in the treatment, if there is more than one practitioner (as is so often the case). If you have to make plans, such as time off work or someone else to care for your children, triple check! My example is I was originally told I would need to be isolated for ten days. I made plans around that advice, such as leave from work. A week before the treatment, I discovered it was five days for work, fourteen days for family/friends over five years of age who were not pregnant, and twenty-eight days for under-fives and pregnant women (which of course can affect working arrangements depending on your job). My isolation specifications are all around time and proximity: preferably not closer than two metres for more than 15 minutes a day.

The point is, when we plan for child care or time off work well in advance, we need to be confident we are planning correctly. I haven’t got to the root cause of why the patient gets different advice from different parties, just warning it is possible, so watch out for it!

Ask About Your Specific Activities

While there were pages of frequently asked questions provided, not one of them addressed swimming or going to the gym! In my case I was allowed to swim on Day 3 and go to the gym on Day 5, provided I took my own towel and kept two metres away from children. I needed to specifically ask about exercise related activities though – something I think is an improvement that could be made in the documentation!

The medical profession are certainly quick to tell us exercise is important medicine (obviously I agree) but then leave all mention of exercise activities out of the FAQs.

Make Sure You Are Advised Of Any Possible Health Effects

Perhaps due to my own naivety I expected my change of treatment to be relatively smooth. In reality, it really has been smooth, I certainly can’t complain too much! Let’s say the effects can be disruptive to your normal routines. I had a period of feeling, as an English friend says, “rough”. Rather a good description, really, rough!  While every situation is different because there are a myriad treatments out there for a myriad of conditions, I found I had an increase in nausea/lightheadedness attacks (which are quite debilitating) and I started to feel RA pain in my hands – this I believe due to the fact my thyroid was having a field day running wild while waiting for the radioactive iodine to work its magic. A thyroid on a binge can exacerbate RA symptoms. Lethargy/fatigue reared its ugly head as well for a few days.

This is being resolved by my going back on my old thyroid medication at a half dose – not an unusual recommendation in my situation, but every case is different. This is an EXAMPLE only!

A stroke survivor friend of mine recently ended up in hospital as his body adjusts to a change in medication. Very different medical cases, he and I, but similar results in that a change of treatment lead to a changed health experience, albeit temporary.

Make sure you are aware of what you might expect and the steps to take to mitigate any unpleasant effects. I knew I could call my endocrinologist for directions, I knew what to watch out for and my GP is watching over me.

Keep Moving As Much As You Can

I will be the first to admit when the nausea/lightheadedness kicks in, there is not much moving of any sort to be done. I am still constantly surprised at how debilitating it is: there is NOTHING I can do when it hits. Apart from take anti-nausea medication. Other patients I have spoken to say similar. No pain, just the awful, all-consuming feeling of utter “OMG, I have to lay down”.

In my case, the overactive thyroid, probably in conjunction with the low iron (lots of chicken and egg stuff here, I have to say) definitely affected my muscle strength/tone. I was very keen to get back in the gym as soon as possible as I know my conditions result in the loss of previous strength gains very quickly.  I’ve worked very hard to be able to do what I do now, I don’t want a ” one step forward, five steps back” situation! I actually haven’t made it to the gym since the treatment change. I was heading to the gym yesterday, but I got waylaid buying a dress – not the advice I would give my clients, but I’m excusing myself on the basis I did walk 8,295 steps in the process of said retail therapy! So back into it today!

I have been swimming, although that was before I started back on the medications and I could only manage 500 or 600 metres before I felt completely wiped out. The point is – do as much as you can, while at the same time being cognisant of the fact your body is going through an internal adjustment. Making the judgement of how much is not enough or too much is a skill that needs to be developed – if this is a first time experience for you, you may need some professional help in making the right choices. Listening to your body and common sense are pretty good decision making aids. Just don’t fall into the trap of using any side-effects of the treatment change as an escape clause, because you will likely regret it later.

I did definitely find I was getting stiffer over the worst few days – reminded me very clearly of WHY I started all this exercise stuff in the first place! I don’t like that stiffness one little bit. Very glad to be getting back to my definition of normal now!

Summary

A change of treatment is often recommended for a variety of reasons. I had a change of RA medication in 2016 with no rocks on the road. This time has been a bit different. I am sure over the coming years I may have other treatment adjustments or changes.

Each change may or may not bring temporary changes to our experience. Our goal during these times is to minimise any reversal of our quality of life gains to date.

As mentioned above I felt stiffness starting to return over a few days of relative inactivity. I was stiff getting out of bed, stiff getting off chairs and was finding getting out of my car a bit of a challenge. THAT, if nothing else, is enough of a trigger for me to GET MOVING! The last thing I want is to be unable to get in and out of my car!

Be prepared, plan well, use the medical support available and most of all KEEP MOVING!

Good luck!