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.

Harvey's Last Poem posted

Increasingly
Despite memory -
'tiny, native narcissi
midst distant massif
verge & meadows' -
my cruel malady
spurs me to confess
increasingly, I
long for oblivion.

Harvey McQueen

Originally posted at Tuesday Poem

Tingling

Today even my lips are tingling. I have had this tingling in my legs and arms for many years now.
I guess knowing that I have myositis means I don't even worry about this symptom anymore.

I don't often get it in my lips though???

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.

Side effects?

Today I am feeling nauseous again.
I presume it is the immunosuppressant drugs I am taking.
I have been taking the full dose for nearly a week now, which coincides with the sick feeling in the stomach. It may just be a coincidence. Who knows?

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.