Myositis Malaise

• Malaise (/məˈleɪz/ mal-AZE) is a feeling of general discomfort or uneasiness, of being "out of sorts", often the first indication of an infection or other disease. 
• Fatigue occurs with malaise in many common diseases. 
• Malaise can be accompanied by a feeling of not having enough energy to accomplish usual activities. 
• A vague feeling of bodily discomfort, as at the beginning of an illness.

So this is what it has come too. I wake up in the morning and head down stairs for my first cup of tea and can't even pick up the cup without pain. It's like lifting a 10 kg weight! (I use to lift weights for fun!)

Photo By: Cpl. Courtney C. White                                                                                                      

This simple act of waking and getting a cuppa has different conotations for people with chronic pain and muscle disease:

1. Waking

 - realizing your body is in pain

 - trying to get out of the bed (trying may be the operative word, especially when you find it difficult to roll over or sit up)

2. Walking

- stiffness but just try and get moving

- down the stairs is an extra challenge and extra pain (think yourself lucky you can still manage pain)

3. I could go on but typing is tiring my fingers, arms, shoulder and back...

Hydrotherapy and why it helps myositis

My twice weekly hydrotherapy lessons have been helping my myositis. I thought it was but this was not proved until I had to miss 12 days and started getting more tingling in my arms and legs, upper back pain and general aches and pains again.

I am no doctor or physiotherapist but I have asked the physiotherapists running the classes why hydrotherapy helps myositis and this is what they had to say...

Something's working

I am feeling better than I have for years so something that I am doing is obviously working. So what am I doing?

• Hydrotherapy twice a week. The classes are run by a physiotherapist and are very mild.
• Taking more immunosuppressants under specialist's orders.
• Taking glucosamine and Vitamin D under rheumatologist's suggestion.

Feeling physically strange

Sometimes I feel like a fish out of water: I have a body but it is not working right. Actually being in water is about the only place I do feel like all my muscles relax - especially if it is warm water. Then I feel so good I have to remind myself not to overdo it as I start jumping around and exercising and swimming and the next day my muscles are too fatigued. Soon I will start hydrotherapy exercises at the hospital pool. I am looking forward to that.

Once a dancer

This weekend I pottered around, mostly inside, tidying and sorting, sitting and standing.

When I went outside on the uneven ground I watched my steps very carefully.

I wondered about a cane and whether it would be more of a hindrance than a help at this stage and thought about youthfulness and the use and movement of the body and how the way we move has a big say in how we appear in relation to getting old.

 I quietly and momentarily grieved for the movement freedom of my youth and realised it was ironic that I should get this disease as I was, for many years, a dancer.