Coping With Christmas!

Christmas is a time of family get-togethers, great food, fun, laughter, presents and perhaps a glass or two, or three of wine or other festive cheer of your choice. Often there are lunches with one family, then travel to dinner with another. There may be picnics and BBQs on days either side. Excited children waking early to open presents.

During the month of December there is shopping to be done, decorations to be hung, the tree has to look perfect.

SLOW DOWN!!!!

Chronic conditions don’t take a holiday over Christmas and New Year – they have this remarkable ability to keep on keeping on.

Here are my tips for keeping on track during the holidays. Click on the links provided for more information!

Avoid the Boom Bust Cycle

This is the very time of the year you want to ensure you avoid the boom bust cycle.

This is the very time of the year I hope your friends and family understand the activity limits you set for self-preservation.

Don’t try to do EVERYTHING, don’t try to be perfect or to meet social expectations. You know your limits, adhere to them.

It goes without saying not to leave things to the last minute – plan out the month of December carefully so you don’t overdo on some days.

Watch the Calories!

Ensure you pay attention to your calorie intake. The festive season is one where we can easily indulge and spend the next month paying for the privilege by increased pain levels in our joints.

Keep Moving!

While it might be difficult to keep up all your exercise routines every day, please ensure you maintain your daily stretching.

Sun Protection is a MUST!

Remember to slip, slop, slap! It can be easy to forget your sun protection when partying. Don’t!

Have Fun

There is no link for this tip – just have fun, enjoy your friends and family.

Merry Christmas, Happy Holidays, Happy Festive Season.

If you aren’t exercising yet, you are still working up the courage, make a New Year’s resolution to call or email me in January.

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!

Challenges of Living Alone with Chronic Conditions

If you have newly discovered you have a chronic illness/condition/disease AND you live alone, there are challenges patients living with family don’t face to the same degree. Some of the items below I have mentioned before, but today I am looking at the specific circumstances of living alone, which can complicate matters. While we may not have children or a partner to care for (in some ways making life a little easier perhaps), the flip side of living alone means no-one to make us a nice cuppa, to help us make the bed (or let us off the hook entirely), or to just snuggle up to for comfort.

Even if we have a nice neighbour to call on for help (as I have done from time to time), we may need to plan our activities very carefully. It is easy to fall back into the boom-bust cycle, both physically (pain) and psychologically (the stress), especially in the early days. We aren’t used to the “new me” at all, we tend to think of it a bit like having the ‘flu, we’ll just get over it. No, sorry, this is here to stay (unless we go into remission, which is possible in some cases). We can learn to manage it, yes. In time and with practice.

Today I’m asking you to carefully consider the physical and practical aspects of managing day-to-day tasks. It WILL get easier as your treatment starts to work and you build up your resilience over time, learn to pace and build up (or build back) your strength, but today we are talking about the beginning, when we are adjusting to living this new life. These are some of the things I wish I’d known in the early days.

Grocery Shopping

Grocery shopping can be a challenge. Yes, I could order on-line and have my groceries delivered, but that costs money: if we live alone we don’t usually buy enough to qualify for free delivery! It is OK to carry the bags in from the car one at a time if necessary – or even half a bag at a time. Take the frozen stuff first, in case you need a rest between loads. Once you get stronger this will improve – but don’t try to do what you used to do before, not until your body is ready. If we struggle to carry in all the bags at once, where do we go? Yep, back into that pain boom-bust cycle.

Shop more frequently if possible and necessary.

Showering

I remember standing in the bathroom in tears when my shoulders were playing up badly. I could not dry my back after my shower. It wasn’t just the pain, it was the inhibited range of motion. Also, this was out of the blue, completely unexpected. Situations like that can make fears of the future rise up and cause anxiety, anger and frustration. Living alone means we have no-one to talk to about those fears right there and then, no-one to comfort us in our time of stress. Also, no-one to dry our back. Mindfulness exercises will help. Relax our mind and relax our muscles – often times that is just enough so we can complete the task at hand. That alone makes us feel better.

Bath sheets instead of bath towels are very useful. Being larger, not so much shoulder movement is needed to dry one’s back. While there is a lot of technology out there to assist people, I haven’t found anything yet that helps dry one’s back. I admit I haven’t looked very hard because the problem was not ongoing for me.

The unexpected can happen. Negotiating our ablutions, unexpected events or not, can be a challenge. Putting prescribed skin cream on areas you can’t see, for example, can be a bother to say the least.

Changing the Bed Linen

I’ve mentioned before that changing the bed linen used to wipe me out. But there is no-one else to do it, so it is either manage it somehow or sleep in dirty sheets – not the best option. Break it down over the day. Get the linen off the bed (I find that not too difficult) early, then do the rest spaced out over the day if necessary. Put on the bottom sheet, go away and do something else or rest. An hour later tackle the top sheet. If putting on the new doona cover is too hard to do in one hit, break that down too. It is OK, you are the only one seeing your messy bedroom! You have all day to get the bed back together! If we give in to the “I must do it now” story to do our bed in one hit, where do we go? Yep, back into that pain boom-bust cycle.

Above is Cleo, very comfy in her little fluffy igloo. She feels safe and warm and protected. We need to feel the same, we just don’t need to cause ourselves a flare getting there.

Our Hair

For anyone with long hair, this can be a challenge, especially if our shoulders are involved in our condition, or if standing causes pain (a chair in front of the mirror would solve the standing issue). Blow drying long hair can take twenty minutes or so, our arms raised for much of that time. On a bad day just don’t do it – letting your hair dry naturally is not a crime, the fashion police will not issue a citation. Actually, no, the fashion police might very well issue a citation, but WHO CARES! Our path to regaining our functional movement and managing our pain is WAY more important than someone caring about our hairstyle. If we force ourselves to do our hair to meet social expectations, where do we go? Yep, back into that pain boom-bust cycle.

Dishes and Ironing

Ironing is easy – I’ve talked about that before – just don’t do it. One item when you need it, that’s enough. Although sitting may be a solution, I find I don’t get enough pressure happening so the clothes don’t look “done”.

A fellow patient I know says it takes her three tries to get the dishes done, with rests in between. Standing is a major source of pain for her at this time. It is what it is – if you have to wash a plate at a time, so be it. Build up to two plates. In time you should be back to being able to do all the dishes at once, but feeling guilty because you can’t now is not going to help. Wash anything you use as soon as you use it is a strategy I adopt most of the time. Living alone we tend not to generate a dinner wash of six plates and cups, which is a good thing. If you have a dishwasher, I hate you already (I don’t).

Cooking

Cooking is a little different. We need to ensure we are eating healthy, nutritious food: the two main reasons are to enable our body to fight this battle the best it can and to minimise or reverse any weight gains due to medications and our reduced activity levels, thereby protecting our joints and internal organs. Unfortunately, cooking is not necessarily as easy to spread over the day as other tasks can be.

We need to plan our food preparation so we don’t do more than we should at any given time. We may simply have to give up some of our favourite dishes – for a while – if they require lengthy preparation. There is NO point in spending a painful hour preparing something only to be too exhausted or in too much pain to actually enjoy the fruits of our labour. Don’t put yourself through it. Console yourself with the knowledge that a dish requiring less preparation is probably a healthier dish anyway!

This is where living alone can actually be a plus, as we aren’t faced with anyone complaining about the “plain” food. Then again, someone else could be cooking for us! It is what it is, just please eat healthy, nutritionally balanced meals!

If you can afford it (many of us, having reduced our working hours due to our conditions, can not) delivered meals such as Lite n’ Easy can be a great solution, at least to have some in the freezer as a standby. I use my slow cooker to cook six meals at a time and freeze five. My freezer is bulging with pork, beef and lamb meals which take seven minutes to defrost and three minutes to heat in the microwave. Lifesavers if I have a tiring day at work. I’ve been known to boil two eggs and have them with a steam fresh bag of vegetables if all else fails.

I never peel potatoes or carrots, the skins are good for us anyway. I’m not allowed green beans or onions, so I avoid a lot of slicing and dicing. There are great kitchen appliances available to make these things quick and easy. Make Christmas present requests. I know two people who are stroke survivors, both need to manage with one hand and have quite a few utensils that are very useful. Look at what is available that will make food preparation easier for you.

General Housework

One thing to avoid is the temptation to clean up like a whirling dervish if visitors are coming. Try to spread out doing tasks over the week and have a room you can just chuck stuff in if need be and close the door! “OMG, Jane’s coming over, I must have a pristine home” is a recipe for disaster, especially in the early days when you are learning your new life. Most of us who have worked all our lives are very much into the routine of spending a good part of our weekend doing everything: clean the bathroom, dusting, vacuuming, clean the oven, maybe mow the lawns, wash the floors, change the linen, do the laundry, ironing for the week ahead, grocery shopping and THEN we used to add some socialising on top of all that.

socialising is important
I do get to socialise! It is important.

Ummmm – not a good plan any more. It doesn’t matter what your major symptom is; pain, lethargy or other. Trying to do it all is not going to help. Stop. Don’t be tempted. We have no-one to delegate tasks to and can be so tempted to do it all at once, to feel we HAVE to at least try to appear “normal”. No we don’t. We have a new normal now. If Jane is a really good friend, she is not going to care if your place doesn’t look like Martha Stewart’s been your housekeeping consultant, Jane is going to care how you are feeling, how your health is.

Summary

Look, all that and I haven’t mentioned exercise once! I am now. No, I don’t write template exercise routines and publish them because that, I believe, is inappropriate for my client base. Every single one of us is different. Different conditions, different stages, different trouble spots in our bodies. It is important we make sure we have time to build our physical condition though, in ways appropriate for us as individuals. This is NOT a luxury any more so we can look good on the beach come Christmas holidays, this is now a necessity.

Living alone can make exercise harder. No-one to motivate us or support us. No-one to take that first short walk with us. It can be easier to just turn on the TV and hide from the world.

All the above careful planning of our activities will be for naught if we don’t build conditioning into our routine. Even before I did any formal exercise or pain management studies, I learnt very early on if I moved, my stiffness and pain receded. That’s what led me to learn more. Why was it so? How much better could I get?

Have I had bad patches? Of course I have. I remember the shower incident mentioned above, another day I was woken up by pain in my right arm that was excruciating, a day I lay down for fifteen minutes and then couldn’t get off the bed. Overall am I better now than I was in late 2014? Definitely. So. Much. Better.

For Melbournites, yesterday I walked from the corner of Nicholson St and Victoria Parade to Federation Square. Stopped, had a coffee (very nice Bailey’s Latte it was too), then walked to the Arts Centre.

Bailey's Latte
This was SO delicious.

Three years ago I was on crutches.

Beat the Boom Bust Cycle

BOOM! You feel great! You do all the things you’ve had to put off. What a sense of achievement!

BUST…… Can’t move, feel totally wiped out, no energy……

And so the cycle goes.

While the boom/bust cycle is certainly applicable to pain, today I am looking at another symptom of many chronic conditions, fatigue. Lethargy can be a better description.

If you google “fatigue and rheumatoid arthritis” you will get about 579,000 results. Similar with other conditions. “Fatigue and lupus” will find about 705,000 results.

While fatigue can be, often is, linked to pain levels, I have found it can also not be: I can be fatigued without pain. Thankfully, not nearly as much now because I’ve adopted strategies to manage the fatigue much better than I did in the early days. As will be the case with many people, there may be more than one condition involved. In my particular case, hyperthyroid, a condition that may cause sleep disruption/lack of sleep quality – not something that helps a person suffering fatigue.

I still remember one particular day early in my journey. I woke up feeling FANTASTIC! Off to the gym I went, did a great workout, did the grocery shopping on the way home, changed the linen on the bed: and then collapsed. I had no energy for three days. Not how I want to life my life.

In an earlier article on removing stress from our lives, I spoke of certain practical changes I made. Not all were for stress alone.

The following should be read as ideas. This is some of the things I’ve done: all, some or none may work for any other individual, or may simply prompt thoughts about what might be applicable in your own situation.

Depending on how aggressive your condition or conditions are you may not need to be this drastic. Lifestyle changes such as exercise, eating well, ensuring adequate hydration and good sleep hygiene may be sufficient. The Arthritis Foundation has a short introductory article on beating fatigue with lifestyle changes. I certainly incorporate all those (especially the exercise, of course) in my life!

Don’t Overdo It!

Rule Number 1 is the same as Rule Number 1 for pain management. On the “BOOM! I feel so good today” days DO NOT rush around madly doing a list of things a mile long (shopping, go to the gym, vacuum etc etc). Especially in the early days (battling the guilt of not getting things done) we can go completely overboard on the BOOM days. Guess what? The next few days are awful. BUSTed. Then we feel awful again because we aren’t doing what we feel we should be doing…… around and around it goes.

Even now, I never do my grocery shopping the same day as I do a strength workout. I don’t do a strength workout the days I go to my day job. I do not check my work emails on the days I am not in the office (that took discipline, developing and sticking to that rule). I plan ahead and I PACE myself carefully.

RELOCATION

When I was appointed to my current role, I lived a considerable distance from my new work location. I love driving, but spending an hour in peak-hour traffic in the morning and up to two and a half hours getting home after eight hours in the office was NOT a happening thing. Not only did I find driving on the freeway in second gear extremely stressful, an eleven and a half hour day was just way too much. The best solution for me was to relocate closer to work.

I can now drive door to door in ten minutes, or I can take a tram and be there in twenty minutes. No stressful driving conditions and a much shorter day.

Reduce Working Hours

This is a tough one. Again this is an aspect of life that can relate to both stress and fatigue. If you are fatigued, you are less likely to perform as well at work and that creates stress (and in some cases, guilt). If your work is being a mother and a wife, the same feelings can apply.

In either situation, reducing working hours can be difficult. There are financial implications of reducing paid hours of employment. For a mother, who is going to do the work?

I have been extremely fortunate and am extremely grateful for my situation. The reduced hours I work allow me to feel I am professional and effective when I am in the office, yet I get enough time to ensure my exercise regime is followed, I can prep meals on a day off for the days I work and I get adequate rest. I can also schedule medical appointments on my days off without feeling guilty for taking time off work.

No, financially it is not as beneficial as working full-time. But I am a lot healthier.

Exercise

Yes, well, it goes without saying that would be high on my list of recommendations! Limberation would not exist if I did not believe so strongly in the benefits of exercise. I won’t repeat my How Tough is it to Get Moving article here, I’ll just repeat, when I say exercise, I’m not suggesting you rush out and start running 10 km a day!

The days I do strength workouts I ALWAYS sleep well that night. Exercise has definitely helped alleviate my fatigue.

Healthy Eating & Hydration

Particularly, I have found, a problem if you live alone. When you are so tired you can hardly keep your eyes open (but of course you can’t sleep either), perhaps also in pain, maybe also stressed because you missed that important deadline at work or missing the school concert: guess what, taking the TIME to eat properly, or even enough, just seems to fall by the wayside.

Once I started making sure I ate enough protein and stopped depending on “easy” solutions such as toasted cheese sandwiches, I did indeed feel a lot better. The meal prep mentioned above is not just about time, it is also about ensuring I have nutritionally balanced meals right there when I am too tired to cook.

Drinking enough is also crucial. I find I am good on the intake when I am at work or the gym. I am slack when I am home – the water bottle always seems to be where I am not and I forget. I certainly know about not drinking enough later on though.

Don’t Worry About the Ironing

Or the vacuuming. Or polishing the furniture (a quick dust will do). Yes, you must feed the cat, dog, fish or bird if you have one. Vacuum one room a day. If you are in a family environment, delegate the ironing if possible: if living alone a) buy clothes that don’t need ironing or, b) iron one thing the night before. Hide the ironing basket in a cupboard out of sight, not only of visitors, but out of sight of yourself so you won’t be tempted to overdo it!

Sleep Hygiene

There are lots of different sleep hygiene strategies/techniques you can try, from breathing techniques to relaxation music, yes, even counting sheep will work for some. Temperature of the bedroom is important, put the screens (iPad, phone, TV) away well before bed-time. Talk to a professional about strategies that might work for you.

This one is an ongoing challenge for me, so I have no brilliant suggestions of my own to share. I know it is important and I’m working on it!

Why the Cat?

Why is my cat the photo? Because Cleo is doing what we must all do. Learn new things, within our restrictions. I don’t have an area I can let her experience the great outdoors freely. Learning to adjust to a harness and lead allows her experiences she would otherwise not be able to have.

Our harness is learning to PACE ourselves, so we can still have adventures.

Additional Resources:

A very interesting media release from 2007 by Arthritis Australia is worth reading, Women’s Insights into Rheumatoid Arthritis.