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. 

Learning to express your needs when you have chronic illness

I am trying to learn to recognize my own needs and the benefits of voicing them to others. This is both with my family and in the wider community.
Is there really anything wrong with asking for the shopping bags to be carried out to the car?
I am also trying to learn about the best ways to ask for help. The following talk is from people with Myositis and their challenges of expressing their needs as well as some helpful tips on self-advocacy.
Self-Advocacy When Coping with Myositis

ACTIVITIES OF DAILY LIVING (ADL) CHECKLIST

The Checklist is provided to help you think of all the tasks you do and may need assistance with. This checklist is something you may find useful if you are starting to have difficulties with daily activities such as personal grooming like shaving or brushing your hair or preparing and cooking food.

I do have problems with these and like some of the suggestions:
Do you use or would you like to use adaptive devices to prepare meals?
For example:
• Rocker knife
• Mini-food processor/chopper
• Adapted spatula
• Color coded burners and knobs
• Digital timer
• Lightweight unbreakable bowls
• Lower work surfaces

This checklist is not only good to face facts and clarify these concerns for yourself but it may help your doctor, specialist or rehabilitation specialist of physiotherapist to understand where you are and how to offer help.
Keep in mind though it is not specific for Myositis.

http://www.oregon.gov/DHS/STEPS/docs/module1-handouts.pdf

If anyone does know of a checklist that is specific for muscle disease please let us know. Thanks.

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.

Pain - something that does help

2012

This medicine, available over the counter, actually does help relieve the pain in my joints. It is called Nagesic Forte and it is made from curcumin which is also in tumeric.  It is made specifically for arthritis pain and it has helped reduce the pains in my ankles and wrists.
More information on Tumeric's benefits at help autoimmune
I know you will keep in mind that what may work for me may not work for you.
It is meant to:

1. Provide symptomatic relief of arthritis pain
2. Provide symptomatic relief of inflammation
3. Inhibit the process of cartilage destruction.

Gobbeldy GOOK

I had never come across this before - when I tried to copy and paste something from an article it turned out like this:  "gobpyfdfcwk}f hppyohgd cffjfj zo hjjyfww zdf bvlzkmhgzoykhlfzkolon{ om gdyockg jkwfhwf hcj zdf gobplft, pyogfww"oykfczfj,kczfnyhzk}f, zdfyhpfvzkg hppyohgdfw zdf{ yfxvkyf#"   !!!

Was this what was happening in my body? All the messages were getting confused and going haywire and turning into gobbeldey gook? What the article actually said was:

Christmas myositis update

Everything is going smoothly. Hurrah!
I am going okay in the lead up to the great Christmas party at our house - over 20 guests.
This okayness is only due to large amounts of help from family. Thanks to my husband who shops and wraps gifts and has written most of the cards this year; to my teenage daughter who has come shopping with me for the hour here and there I can manage; to my sister in laws who are cooking the ham and turkey and pudding.

Wishing you a wonderful time
however and whatever you
celebrate.

Coping with Christmas and chronic illness



Christmas shopping is proving difficult, tiring and causing extra unmanageable pain in an already overburdened body.  Shopping online is an option but I think I have left that too late to receive the gifts in time. Next year I will have to start planning and purchasing much earlier. How are you managing?

"Holidays act like a lightning rod where all the physical and social concerns around chronic illness get really highlighted,"

Who has made an impact on my Myositis

Well I never really thought about this before but it was a question posed by Believe in Who You Are for the 77th Disability blog carnival.  I did not have to think hard or long about who had made a positive impact on me when I was first diagnosed - it was definately the  Polymyositis & Dermatomyositis Support Group which is a great and supportive online group at Daliy Strength.
Such great people who are always there when I need them, listening to and accepting others' experiences,  helping to evaluate relevant information and relating personal experiences and providing understanding as only someone else with the same disease can.

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?

This is it

I spent so long (around 10 years) looking for this diagnosis and now it is the last thing I think about.  I use to spend so much time on the web looking for clues and researching about what it could be that was attacking my body and now maybe I should do some research on what can help.

Maybe I have been coping by ignoring it but now I am realizing this is what I have to learn to live with. It IS myositis.

Talking to the pain person

My GP suggested a questionaire to help me access a pain psychologist. He said it would be someone to talk to about my myositis, someone who understands pain and how to cope. This is a very specialised field now as there are so many people living in chronic pain.
It is good that there is someone to talk to as even though I come from a large family no one wants to talk about it except probably my mother and I don't like to burden her with all of this. If she asks, and she does, I tell her a little but not too much.

Some books I have found useful:

Managing pain before it manages you. M.A.Caudill, The Gilford Press.

The Pain Survival Guide: How to Reclaim Your Life. D.C. Turk  & W. Frits, American Psychological Association.

Knowing what it is helps

On January 1st, 2010 I listed my most concerning symptoms to tell my specialists,  as still no diagnosis after many years.  It is a long list of 18 symptoms. It is interesting to look back as after over a year of trying prednisone, acupuncture and most recently Azathioprine , a drug that suppresses the immune system, all these symptoms still persist.

This may seem depressing but there has been a major shift in me just knowing that I have a correct diagnosis this time, from a muscle biopsy. I can most days not concern myself with the symptoms, just take my pain killers and get on with my day. 

My pain specialist says she has seen a great change in me just knowing and not searching for answers anymore and also understanding this is for the long haul...so I think we call this acceptance.

I am a work in progress - I am not my disease.

Only sad, not lonely

Thank goodness for the internet and the distraction and connection that it give us. It allows me the cathartic pleasure of getting things off my chest when no one else will listen. For me this does seem to help alot.

"Today I woke up and it all just hit me - like a freight train - I hadn't seen coming.  I can't go to the shops, I can't walk around and look for clothes for my grandson's christening...walking really hurts and I probably need to change my job! ( I work part time only 7 hours a week!)

I know there are lots of people worse off than me and normally I am a person of blissful bravado but once again the old Loss, Letting Go and then Get On With It Again has reared up. I don't think it has an ugly head but it is probably necessary to let me down slowly, bit by bit, over the continual limiting restrictions, that many chronic diseases must bring and the course my PM is taking, despite what I try.
Good luck to you all with the fight and thank goodness for the internet or we would be lonely as well as sad.
P.S. I am not sad every day."

This is what, or very similar to what, I posted on Daily Strength Forums. Thank you to all those there on the myositis forums for their continual and ongoing support.

Some days

Somedays I forget to take my regular pain meds. I don't realise until I 'm wondering to myself why I'm in so much pain today? So I guess they work and they keep the scourge of pain at bay.
I don't think I would be a nice person without my pain meds. It has been hard to come to terms with living in chronic pain and understanding that I need to take these tablets all the time. I have never been one for taking lots of painkillers or antibiotics or anything like that and usually prefered more natural ways.
The only thing that is constant is change.

Essential Exercise

Went in the pool again today as it is what the physiotherapist suggests to help build up muscles again. Mainly walking sideways - I think it is meant to build up the glutes. I also do specific arm exercises and squats and leg stretches daily. They are kind of like exercises for seniors, but hey I'm getting there. The rehabilitation specialist says it is more important to do exercises for a person with myositis than a person without, to build up the muscles that have not wasted. There is a large inward mark on my right thigh which is muscle wasting as large as the palm on my hand. It took me ages to find out what it was as the G.P. and rheumatologist did not know.

LEARNING NEW THINGS: conscious walking

Well that is how I am now trying to put a positive spin on it - it is not an extra thing I have to do but a new way of doing things.
Look and Walk. Meaning look at all times where you are walking, do not talk and walk, do not get distracted just look down at where you are walking.This is the only way I can prevent a fall and believe me when you have experienced the humiliating, blacking out, not being able to get yourself back up, like a fish out of water falling over then you do not want to fall again. 

So I am learning to Look and Walk, conscious walking, like meditative walking I guess...I suppose I will get use to it.

Just about today

Today I spent a lot of time on the computer - too much I fear, as I will feel it tomorrow. I feel it now the burning pain in my thighs and the dull ache in my shoulders. This is par for the course with myositis and I am trying to sit only for half an hour at a time and then get up and do something different as the pain specialist suggested.

(Being a specialist in pain, wouldn't that be depressing! I know they are helping and I think it is wonderful that we have them but seeing people in chronic pain all day could be a downer.)

Also I did some housework, ironed a shirt, cleaned the kitchen benches after breakfast, cooked the lunch, and folded some washing, but the pile just seems to get bigger.

My son was home today so he helped me, for about an hour, doing chores that are too awkward like getting things that had fallen off the line and hanging the washing out.

Have to go and take my pain killers now. Good Day to you.