23 Ways to Help Yourself When You Live on Your Own With ME/CFS

Living with chronic illness, especially one involving chronic fatigue, is hard. Often we rely on others for help to do those every day tasks that most people take for granted. We need to take care of ourselves to minimize the effects of our illness and yet, even these most important tasks take up so much of our limited energy and strength.

Some of us don’t, or can’t live with family or friends. Perhaps we don’t want to lose that last bit of independence. Perhaps moving in with relatives would mean destroying the care system we’ve gradually built. Even with the visits from those who love us, living on your own means they will have to leave at some point and you’ll have to fend for yourself again. A very daunting thought.

Over the last nine months of having myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) I’ve learned to find ways to make looking after myself that little bit easier. I’m still learning but I thought I’d share some ideas which I’ve found particularly helpful.

Food and drink

1. Keep a bottle of water with you. After one too many tires of ending up parched because I was too fatigued to move off the sofa and get myself a drink, I bought myself a reusable water bottle. I top it up when I have to get up for something else.

2. Experiment with new teas. I love tea but I’ve found I can’t always tolerate it now. This led me to try out new teas to find ones which taste nice cooler because I can tolerate these better. My best find is a green tea with turmeric. It tastes nice and is (hopefully) helping to reduce inflammation.

3. Don’t be ashamed to eat ready meals when you don’t have the strength to cook. Ready meals have a bad reputation for being terribly unhealthy but there is a much bigger range of nutritionally balanced options now. I looked around a bit so I now know where the healthiest ones are. I often boost nutrition by adding an extra portion of vegetables. If you’re concerned about the amount of salt in ready meals, check with your doctor if your health can tolerate a little extra.

4. When you do have a little energy, using a slow cooker is a huge bonus. Throwing in a bunch of ingredients gives you a low effort meal with plenty of leftovers. Don’t be discouraged by recipes that call for pre-softened ingredients. Most recipes don’t struggle for missing this step out.

5. A George Foreman style contact grill is my best friend on days when I feel up to doing something. I put on a piece of fish or meat and microwave some vegetables. Job done! It’s much quicker than the oven, safer when you think you might fall into the oven, and often leaner too.

6. Keep a range of vegetables and carbohydrates in the freezer for quick nutritious meals. I keep in bags of mixed vegetables, peas and spinach. When I can, I’ll cook four portions of brown rice, pearl barley or mash potato and freeze it for those “I feel like death” days. Couscous or buckwheat are good alternatives as they only need soaking.

7. During a bad post-lumbar puncture headache my mum cut up lots of watermelon and salad items for me. When she left I could grab some and lie back down before my headache made me sick. Definitely one to adopt for tired days.

Household

8. Teach yourself it is OK to not have all the housework done on the same day. What matters is your own comfort. If you can’t do any, it will wait until you can. If you can do some, then even one small job a day is an achievement. I find it helps to write one or two 2 tasks on a list each day as it acts as a reminder to try.

9. Do smaller loads of washing. Shoving a whole washing machine load of clothes into the drum is exhausting. A few items in each load means it’s easier to get them dry, and you’ll get them back quicker. Most machines have a 30 minute quick cycle which is fine for clothes which are barely dirty.

10. It’s OK to change your cleaning products if there are ones which make housework easier. Branch out and see what is available. For example, I’ve switched to a cream cleanser with limestone micro-crystals in as it means I don’t have to scrub surfaces much.

11. If you have the funds, invest in a lightweight vacuum cleaner, dustpan and brush etc. There’s no point in wasting your energy if you can avoid it. Look out for reconditioned items to reduce costs.

Personal care

12. Keep medications both upstairs and downstairs. If you find yourself struggling to move between floors, it might be useful to have them in two places. Many times I’ve been in bed when I’ve decided I do want pain medication after all, or I’ve forgotten my evening tablets.

13. If baths or showers are too hard, consider using wet wipes. They will freshen you up until you can manage.

14. Don’t be afraid to use aids like extra handles on the stairs or bath, or a shower stool.

15. Invest in an electric toothbrush. It’s the little things than we often forget about that can take surprising about of energy. Using an electric toothbrush saves my hands an arms from that bit of ache caused by manual brushing.

16. Decide whether you really need to do things, like washing your hair. No matter what, having clean hair makes me feel better so I got into the habit of washing it every two days. Eventually I realized it doesn’t look greasy as often so it’s fine for three days, or sometimes even four.

17. Choose clothes which make you feel good. This might be your night clothes, lazing-around-the-house clothes, or something a bit smarter. Nearly every day I’ll choose to wear a pretty dress because I like pretty things so I feel that tiny bit better.

18. Keep reminders of good times you’ve had close by. Loneliness and isolation can drain physical and emotional energy so it’s good to have things which give yo a mini boost. I wear a ring that is special to me because I bought it on a day out in York with my mum. We had a lovely day despite me feeling every symptom going. I couldn’t manage such a day now but it makes me smile every time I look at my ring.

19. Find a variety of things to keep you occupied. I find it helps to have the supplies for a few different hobbies to hand. Sometimes I’ll be shaking too much to draw, or can’t find the concentration to read, or my thoughts aren’t cohesive enough for puzzles, so I’ll switch activity. Having options helps me to focus less on how I’m feeling.

20. Consider using brain training apps. Poor concentration and mental clarity has made it really difficlaut for me to do certain things but I’ve found puzzle and games apps easier to follow. This way I still get some mental stimulation. I like Lumosity and Scrabble.

21. Try to learn a new skill. This is another great one to stimulate the mind. It doesn’t matter if it takes you longer to pick things up, or if you make more mistakes than you used to. What does matter is that you enjoy it.

22. Set yourself a (flexible) routine. Even a mini timetable if that helps. It might take time for you to find your flow but having a plan might help you through the fog. For example, your schedule for yourself might start with a slow breakfast, an unpressured time slot for testing your brain, rest, lunch, rest, an attempt at some gentle exercise, rest etc.

23. Don’t give up on yourself. Yes, there are going to be some things you truly cannot do, especially living on your own. However, if you can keep trying to find ways to make managing chronic fatigue syndrome that bit easier for yourself, you’ll be proud of yourself with every little success.

I hope there are some ideas here that you find useful. I’d love to hear if there is anything else you’d add. Change in itself is hard, particularly so if you feel like you have to change because you’ve lost an ability. Illness management is all about finding ways around that loss where you can, and why shouldn’t you have plans in place to make a difficult situation that bit better?

Getty Image by Rostislav_Sedlacek