Maintaining Mental Functioning with Chronic Illness

If you read my posts last week you’d know that lately I’ve been getting back into reading after almost a year of not being able to physically read a book.

I’m reading both fiction and non-fiction and at the moment the main focus of my non-fiction books is my health. I did a review last week of one of the books I read, The Complete Fibromyalgia Health, Diet Guide and Cookbook, and I’m currently reading a book that has been called ‘a much-needed bible of information’ (Professor Warren P. Tate) for people living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, Chronic Fatigue Syndrome M.E.: Symptoms, Diagnosis, Management by Dr Rosamund Vallings.

Image from Goodreads

I will write a review of Chronic Fatigue Syndrome M.E. once I have finished reading it but today I want to talk about how these books are affecting my decision making processes.

Both of these books have got me thinking about how I’m managing my conditions both physically and mentally. Although there is a lot of overlap in the recommendations in each book, there are some major differences as well. The main one I have come across so far is in regards to exercise and diet recommendations. That is not the topic of todays discussion so I’ll expand more on that later.

Managing the mental aspect of these conditions (the brain fog, memory issues and mental health impacts such as secondary depression) can be especially difficult when you are suffering from multiple conditions are unsure which illness/condition is causing each symptom. Dr Vallings advocates for the saying ‘Use it or lose it’ for both physical and mental activities but puts a proviso on how much you use it at one time to take into account pacing and minimising symptoms.

The ‘Use it or lose it’ attitude is probably a good one to have but pacing is the key for ME/CFS. For example, this post has taken me an hour to write but I have had to break that into two blocks with a break in between as my current activity limit I’m working to is 30 minutes of computer work at a time.

I’m yet to read Dr Vallings chapter on depression so I can’t comment on how she recommends minimising the impact of this additional condition, but I can say that she believes that everyone suffering from a chronic condition such as ME/CFS is likely to experience depression at one point or another.

Both books advocate a positive outlook on life, recommending treatments such as Cognitive Behavioural Therapy to help us be able to turn negative thoughts into positive ones. The psychologist I saw earlier in my illness believed I was doing well at maintaining a positive outlook at that stage of the illness so we didn’t use Cognitive Behavioural Therapy, but he did say that it was likely if this illness continues for a longer period of time (which it appears to be doing) I may need help in the future.

My current goals that are focussed on mainitaing my mental functioning are as follows:

• Daily meditation as part of my relaxation time to help promote a calm and positive outlook on life.
• Daily reading (at least 30 minutes) that is broken into maximum 30 minute blocks. As previously discussed I aim to use reading for both fun/relaxation and educational purposes, encouraging my mind to begin to think about being strategic and creative again (both skills I need if I want to keep working in my current role when I return to work).
• Daily writing, either here on my blog or in my diary (which I haven’t used much since starting this blog).
• Daily drawing to encourage creativity.

I don’t always manage to fit all of these in but I am using them as a guideline for daily life. I really need to get back into some sort of routine and work out exactly what my limits are so I can return to work in some capacity.

These tasks are all paced and, combined with my physical goals/guidelines, form a basis for a flexible routine that reduces stress and doesn’t increase symptoms or lead to crashes.

Maintaining mental functioning when dealing with a chronic illness can seem like an overwhelming task (I know I felt that way in the early days of my illness) but with a little planning and consideration it is possible to find ways that do not impact negatively on your health. If you are severely ill, this may mean listening to an audio book or having a crossword/puzzle next to your bed that you do a single move at a time. You may need to incorporate more rest but spending even a minute or two doing something that encourages you to think, remember or be creative would be a great start at maintaining your mental functioning.

Do you have activities you do daily or weekly that help you to maintain or increase your mental functioning (thinking strategically or creatively)?

What mental functions do you struggle with the most as a result of your illness?

Benefits of getting away when dealing with chronic illness

Last weekend I had a wonderful time away with my mum and my sister, T. We visited my Aunty and Uncle at their home on Dangar Island. This visit got me thinking a lot about the way our environment impacts our health.

Before starting this blog, E and I went on a holiday to Port Elliot where we spent a lot of time outdoors and away from technology. This trip to Dangar Island was the same sort of experience.

Today I’m going to focus on the overall health benefits I experienced from getting away. These are things that I experienced during both of my trips away since being ill. I will do a separate post that focuses specifically on getting away or reducing our time with technology and the benefits I see from that.

When we are home all or most the time, as many of us with Chronic Illnesses are, we can get into a routine of daily living that doesn’t change very often. This routine that we get into can be a good thing as it makes sure we don’t push too hard and get a lot sicker, but it can be a bad thing as well. If we have set our routine at a level that is lower than we can actually achieve then we can get sicker through de-conditioning. But even if we have set our routine at the right level to maintain our health, we can still fall into a rut where we are too scared to move forward and increase activity levels.

Getting away from our everyday environment can help us by getting us out of our routines and pushing our boundary limits. By doing this we realise if we have set our limits correctly or if we can increase our activity levels appropriately (i.e. slowly but surely, no more than 10% increase a week).

We can feel as if there has been no progress in our health and, for a lot of us, it can get very lonely being home every day. The realisation that we can increase our activity levels can help us realise that although we don’t feel like it we are slowly improving and being in a different environment and meeting different people can help combat loneliness and any feelings of depression that may be starting to appear.

I also notice that when I’m out in a different environment I tend to be focussing more on things around me and less on myself. This helps me by reducing my focus on my constant pain levels and I feel I can do more before the pain levels reach unbearable levels.

Even if we can’t get away on holidays, I’ve found that just changing up my routine occasionally can have a similar effect on my mood and perspective.

Feeling like “normal” human beings and doing different activities can motivate us to change our routines when we return home as well. I know that when I returned from Port Elliot I was motivated to take the next step and actually start this blog because while we were away E and I were able to talk about how things were going and what I could be doing to help myself feel a bit better. I also know that seeing my Aunty’s meditation room and being in a totally isolated environment with no access to technology most of the day have motivated me to make changes to my environment and routine now that I have returned home.

I will go into the changes I am planning to make since returning from Dangar Island in future posts.

Do you find getting away from your everyday life is beneficial to your health?

What do you do when you find yourself stuck in a rut or routine that isn’t benefiting you?

Related articles

• Feeling down: how chronic illness can effect your self esteem (sharingmylifewithendo.wordpress.com)