Falling over with myositis

Weakness in my legs causes me to fall or trip, which can be both embarrassing and scary.

Falling does make me feel vulnerable.

So far I have only fallen over at home and only once at work, when no one saw.  I am not clumsy, I have muscle weakness caused by Polymyositis. I have fallen down the stairs and I have tripped up the stairs and I have tripped over my own feet. Apparently falls are the leading cause of home injury deaths with nearly 6,000 lives claimed per year in the USA as a result of falls in the home.  

I think I fall over in my home as I am not practicing my conscious walking when I am in the perceived safety of my own home.  

According to one UK study Falls are a common occurrence for people with IBM, independent of age and years since symptoms first presented, and are poorly addressed by appropriate physiotherapy management. National falls guidelines are not being followed, and referral rates to physiotherapy need to improve. I could find no similar information regarding Polymyositis and falls.

Physiotherapists say that we can improve our balance, strength and coordination through exercise. These are the things that contribute to falls. I really do feel that I have improved my balance from weekly balance exercises in the hydrotherapy pool.

Living with myositis: What you can do to help yourself Part 1

Living with myositis, or any chronic illness,  requires certain adjustments. It is important to make healthy choices for ourself - no one else will, no one else can. It is up to us to keep our symptoms under control and take control of our own health with the advice of professional health providers.
Managing myositis starts with proper treatment, including medication and therapy. But there is more we can do to help ourselves each day. These daily decisions may influence the course of our illness: whether our symptoms get worse; whether we stay on an even keel or experience a flare.

Things we need:

• Education. Learning about our illness. This allows us to make informed decisions about all aspects of  our life and treatment.
• Personal Responsibility. Taking action including the basics of taking medication as prescribed and keeping appointments with doctors and the sometimes more difficult tasks such as asking for help from others when we  need it.
• Perspective. Having a wider perspective on the disease is important: painful times won't last forever and it may be difficult to believe things will get better again unless we have this wider perspective. Also realising there are people worse off than ourselves really puts our disease in perspective.
• Self-Advocacy. This means being an effective advocate for yourself so you can get the services and treatment you need.
• Support. Support from others is essential to feeling less lonely and enhancing the quality of your life. Having someone to talk to who understands is important and this could be through a forum such as Daily Strength.
• Hope. Believing that you can cope is essential. With good symptom management, and pacing and understanding your limitations, it is possible to experience long periods of feeling okay, even good. 

About chronic disease: muscle weakness

Mother Combing Child's Hair painted 1879 by Mary Cassatt

I can longer brush my own hair with ease. It is a major effort which causes pain. I need someone to brush my knotted hair.

I can no longer cut the veges with ease. It is difficult and dangerous. I need someone to cut my health giving foods.

I can no longer hang the washing on the line with ease...

You get the idea? I could go on but I think you get the idea. I don't really want to whine on and complain. I know there are many people out there with worse problems than mine. It's just that I had a realization: How can I be a mother to my children if what I really need is a mother. How can I be a mother when I need a mother?

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...

There are more things in heaven and earth

There are more things in heaven and earth, Horatio,
Than are dreamt of in your philosophy
Said by Hamlet  Hamlet Act 1, scene 5, 159–167

I'm not sure if I am losing part of my brain function or

My first ever post.

I have not been blogging very long but it was still interesting for me to go back and read my first post. Already since February 2011 I have forgotten to alternate activities as the pain specialist suggested. Maybe I am just doing it without thinking but I am not sure. It was a first for me to start this blog as I was letting the world know I had myositis - that was a big decision for me but I thought it was for the greater good: so someone else might understand a little about this condition and maybe it would help them get information that you don't find on medical sites.

Here is part of my first ever post:

How good it is

I have been eating what I want and relaxing, visiting friends and family and NOT WORKING and I feel great.
I usually watch my diet carefully thinking it might make a difference to all my symptoms.
I also usually only work for seven hours each week, plus one and a half hours traveling time ( over 2 days) but if this is how great I feel when not working I wish I could win the lottery and never work again.

Wishing you a wonderful and healthy 2012.

No longer rage against the disease

Acceptance of one's life has nothing to do with resignation; it does not mean running away from the struggle. On the contrary, it means accepting it as it comes, with all the handicaps of heredity, of suffering, of psychological complexes and injustices.  Paul Tournier,  Swiss Author

There are many things I have acccepted now, at this stage, about this myositis. Many things I do differently. It is hard to think about them and put them into words

I hate shopping

I never really use to love shopping, like some women do, but now I hate it because it causes me so much pain - the walking, the carrying of bags, the noise, the smells and the driving to get there.  I know I should shop online but I haven't quite got my head around that yet. Maybe this Christmas.
Help is a wonderful thing and knowing how to ask for it too. Now my husband helps by doing the food shopping I feel a great burden has been lifted from my shoulders - literally. It was the shoulders and arms that really ached for 2 days after food shopping.
The only thing I am sad about is my teenage daughter and her expectations of what other mothers do (take their daughters shopping) so about once a month I do take her shopping and we have morning tea and I just grit my teeth the next day, don't say anything and take extra pain meds.

I would love to know if you have any handy hints for making shopping for presents, clothes and food easier?

Daily tasks with myositis

On Thursday, I did the food shopping. 3 days later and I am still in pain. My arms and shoulders feel like they have been lifting 20 kilo weights. Lifting, carrying,  packing, unpacking - I never realised how many tasks were involved in "doing the shopping".  I hate shopping.