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.

Get the Stress Out of Your Life

Being diagnosed with a chronic condition or conditions is stressful. You will notice part of my coping mechanism is I don’t use the word disease. I talk about conditions. I’ve learnt to accept I have a condition, I’m not ready to use the word disease. I’m in my third year post-diagnosis and I’m still adjusting.

Finding out you are not well is a difficult time. So many questions:

  • What does my future hold?
  • How bad might it get?
  • Will I become a burden on my family?
  • Will I be able to do my job?
  • How fast does this condition progress?
  • Will this shorten my life expectancy?

These are just a few of the many, many questions that will run through your mind. Worrying about the answers is, yes, you guessed it, stressful. The answers will ultimately be different for different people. I met a fellow patient in the gym one day. Diagnosed with rheumatoid arthritis in his late thirties, he was forced to give up work in his early forties. He is now in his early sixties. He is still doing everything he can to stay as well as possible – I met him as we worked on adjacent rowing machines. He told me he has had several operations over the years and lack of energy/fatigue is one of his major health issues.

I was diagnosed in late 2014, I am still working, swimming, walking, lifting weights: I am careful about how much I do, but my life has not, yet at least, been affected as dramatically as his life has been. I’m in a much better state of health now than I was in 2014: hopefully I can continue to improve or at least stay as healthy as I am.

I compare the two cases to illustrate in those early days there are no immediate answers. Any of us can be at either extreme or anywhere in between. I worked with a young woman who was having her first baby. She told me in her very early twenties, shortly after she was diagnosed, she could not hold a toothbrush or do up her bra. Yet here she was some years later working full-time and about to have her first child. Try not to worry about the unknown: easier said than done, I know. It took me quite some time to stop worrying about what I could not control.

Your doctor may well have said to you something along the lines of “Get the stress out of your life”. Great – you just gave me more stress and you are telling me to get stress out of my life? Terrific!

We all live with a degree of stress in our lives. Making sure we get to work on time, pick the kids up from school, stretch the budget until next pay day, find the money to fix the water heater than just blew up a week out of warranty, dealing with the daily commute, an upsetting disagreement with a partner, difficult challenges at work. In modern life we have so much packed into 24 hours, many of us don’t get enough sleep which in turn doesn’t help our health or our ability to deal with stress.

There are major stressors: the death of a loved one, changing jobs, moving house, divorce. The Holmes-Rahe Stress Inventory allocates points to many life events. They also developed a statistical predictive model, predicting the probability of a subsequent adverse health event based on a person’s stress score.

In 2012 the Carnegie Mellon University released study findings: How stress influences disease: Study reveals inflammation as the culprit. Then there is Stress as a trigger of autoimmune disease, a study looking at the relationship between stress and autoimmune conditions. This is just three of the many, many studies that have been done.

Stress may also lead to condition flares: all of a sudden the condition will go crazy bad for no apparent reason. As an example, one day I woke up unable to use my right arm, the pain in my wrist and hand was excruciating. I spent the day with my hand in the comfort position (think of an arm in a sling, hand higher than elbow). By 3 pm in the afternoon that flare had faded. Luckily. It may not have been stress that caused that particular flare, I will never know for certain, but I suspect it may well have. We are well advised to minimise stress.

What can we, as patients, do to reduce stress? Re-evaluating what is important to us is a good place to start. If we have a big home with a massive garden, we need to consider do we really need that. Is hiring a gardener and a housekeeper feasible? Can we delegate tasks to other family members? While every person is different, I can spend an hour in the gym lifting weights with no pain at all, yet I end up in pain every time I change the linen on the bed. If I spent an hour in a garden on my knees pulling weeds I’d be in serious trouble afterwards. If we hold onto that garden or the house, we then stress over the things we can’t, or shouldn’t, be doing. By the way, there is nothing wrong with vacuuming one room a day if that is what we need to do – it can be as simple as ensuring we pace ourselves. I discuss pacing in a future article. Consider downsizing (not possible for everyone, of course). Adjust how you do things – I leave some thoughts at the end of this article.

Work may be another challenge. Depending on the hours worked, the type of job and the specific symptoms any individual experiences it may be worth reconsidering how we earn our daily bread. Making that decision can be stressful in itself: there are possibly financial implications and certainly psychological implications. We may have to fight feelings of inadequacy or incompetence because we can’t work the hours we used to or do the tasks we used to do.

Fatigue is one symptom that isn’t always given a lot of attention, yet can be extremely disruptive to our lives. It is also a symptom I have struggled with during the last four years. The feeling of uselessness was at times overwhelming. I went from being a person who did everything at “100 miles an hour” (according to a girlfriend, that is) to someone who has learnt if I go at 100 miles an hour today, I’ll be useless tomorrow. Adjusting to this new way of living and working can be stressful. We want to be just the way we were before. We can slip into old ways of being and then pay the price the next day – or for two or more days. Be kind to yourself: easier said than done for many of us.

We may also feel physically inadequate or incompetent (there it is again) compared to our past selves. The first time I tried to do a leg press again I found I had to start at 20% of what I had been able to do in my heyday. To me that was devastating. I felt like I was a shadow of my former self. Who was I now?

Brain fog. Yes, folks, brain fog is real. Very real. That also leads to feelings of inadequacy/incompetence until strategies to manage it are developed. Even then, nothing is fool proof. I’ll share one little recent example. My real estate agent called. Why was she calling, I enquired. In response, apparently, to my call the previous Tuesday. Me? I called? No, I’d thought about it, but didn’t have time. I was adamant I had not called, maybe one of my neighbours had. Given the topic was a garage door frequently mysteriously opening of it’s own accord, it could have been a neighbour. Well, no. When I checked my phone log, I had indeed called. Brain fog.

I recommend talking to your GP about a referral to a psychologist. Adjusting to being sick is not easy. Having a professional help you work through that emotional adjustment can help ease the stress. Plus, to be frank, you can vent about the whole situation without feeling as if you are driving your family nuts: that alone can be helpful. Ask if you qualify for a Mental Health Care Plan (in Australia) if appropriate.

Exercise is a great way to help manage stress, depending on your current capacity to exercise.

Some things I have done:

  • Downsized – I live in a small apartment. Less vacuuming, dusting, floor washing;
  • Developed a career change so I can stop sitting;
  • Dropped my working hours (although with a new career based around movement I hope I will be able to do more hours, we shall see);
  • In my current part-time accounting role, I have a sit-stand desk, which helps immensely;
  • Learnt to accept I have a chronic condition – that is perhaps the hardest part, accepting;
  • Bought an upright vacuum cleaner so I don’t bend when vacuuming;
  • I don’t do all the ironing at once (in truth I do as little ironing as possible at any time);
  • I cook a week’s worth of meals on a Sunday so I don’t need to cook after a day at work (slow cookers are great for this in winter). Freeze and build up a variety;
  • I plan my activities a week ahead – I never do the grocery shopping and a gym workout on the same day, although I will swim and grocery shop on the same day;
  • Make time to look after my body: swim, strength workouts, Pilates, physiotherapy;
  • Make sure I get enough good sleep;
  • I eat well (most of the time – I’m no saint);
  • Resist the ever-present temptation to work when I shouldn’t.

There are some stresses in life we can’t avoid or control. Those we can control, we should.

For our health.

If you have tips and tricks, please share in the comments.

Lifeline Australia can be contacted on 13 11 14 and is a confidential telephone crisis support service available 24/7 from a landline, payphone or mobile. 

Disclaimer: The author is not a mental health professional. The concepts discussed above are based in part on personal experience and of a general nature, not tailored for any individual circumstances. Readers should consult their medical practitioner or allied health professional for personalised advice.