Polymyalgia - Winning

It's been a while and a lot has happened.  Some of it so sad. It astonishes me when despite the saddest happenings the world still turns.  I have less idea of what life "is".  Is it even something?  I make sense to me as I write even if I don't understand.  I hope that makes sense to you.

My polymyalgia. Or this polymyalgia. Or this mystery polymyalgia. This disease polymyalgia.  But what is the definition of a disease? Do I qualify?
Anyway it is one to me.  A mysterious disease.

For a while I thought it was going,  just as all the experts say.  But then back it came.

BUT I am holding at 2mg of steroids.  It does not control the pain and stiffness but it is bearable.

The goods news I have found that swimming seems to relive it.  Even if stiff and sore I feel better and looser afterwards.  Quite chipper in fact

I am cycling regularly and in one week will be cycling with Sian, Vicky and Ali the Cycletta 42k bike ride.  I have regularly gone for bike rides and am now back to confident, much fitter, and even occasionally exhilarated.

The Weymouth big swim completed Sian and I have ginned up for the Big Yin monster swim in Loch Ness next year.

My weight. Yes we'll.  some successes.
I am 7 pounds lighter.  I feel better for this.

Sophie - Anorexia

I love the music of Eleanor McEvoy an Irish song writer.  I was downloading a favourite from itunes and came across this one.

Sophie. 

Its a beautiful song about a girl with anorexia.  I thought  I would add it to my blog.

I found this link as well. An article in the  Guardian about the song.




Besides writing this song Eleanor really is an extraordinary songwriter and singer.  Her most famous song is "A Woman's Heart" sung with Mary Black.


But she is SO worth a browse through her other songs on itunes/you tube.  Try "I Hear You Breathing In", or "Not Quite Love", "You Will hear better Songs Than This" loads of wonderful songs.

Me in my body

Well I was given this as a task to do. Write about how it is to be me in my body.
I have not wanted to do this.
It makes me instantly sad.

I don't know how to do this - changing the way I use food.
I am too muddled. Can't hold a thought. Too reliant.

There is no way anyone can help me because I don't help my self.

Living in my body is sad although I have had happy memories.  It doesn't matter how many people say I am OK. Although on an intellectual level I might know that as a human being that is the truth, on an emotional level I don't feel like that.

I am going on holiday to France on Sunday.  I am looking forward to it -  but not in some ways.  I have few clothes that fit me and if I go shopping I can find nothing that looks good, exciting.  I am ugly. I am rubbish.

I don't understand that my lover finds me sexy.  I don't believe it.  I don't understand it. I just think they say it.  I think about all the people I like or love and that how they look has so little impact on how I feel about them.  It is who they are that counts, what they think that interests me.  I sort of don't think I count I think. To me.  Although I do count.  So my thought are so muddled.

This trying to lose weight has been such a failure really with just tiny successes.

I sat down this weekend and planned with my lover what to get for food this week.  I bought it and wrote the plan down.  This is quite a step. I don't get pleasure from this type of planning.  But I did it.  It was a little bit exciting!
It worked for one day.
Just one day.
I found a way to fail.
It makes me cry what I have done with the plan already.  Howl really - with anger and sadness, and failure with myself.

It seems I can't do it.  Won't do it.  Am I too spoilt and just do what I want.  Is there another person inside me that does one thing almost without the other side knowing.

I don't understand it.

But failing all the time is just a huge drain and makes things worse and so it's hard to write this down.

I can't do this.  I want someone else to do it for me.  Even though I know no one can.
Writing this crouched over a computer I have just looked down.  On the wooden floor is actually a puddle where I have cried writing this.  It's crazy to be like this.

I am tired of trying. Failing. Not knowing how to change things. Not willing to change. Just staying where I am getting bigger and bigger.
Exhausted with it.
But still not changing.

I am a lucky person.  I have had so much in life. I don't know why I can't do this.

What is it like to live in my body?
Old, tough, fat, ugly.
Lucky, strong.
Capable. Useless.

How am I doing?

Well once again mixed reviews!

I am finding it easier to keep up exercise.
I think this is because I have the Weymouth swim and the 40k bike ride booked.

Today I left work earlier than normal to make sure i could fit in a 40 minute bike ride around Willen lake. This is healthier just because I left work at a reasonable time let alone the bike ride :-)

I also rode for 20 minutes on Monday and tomorrow morning before work I am swimming.  So the exercise is coming along.


Polymyalgia - another milestone.  Today I have reduced the dose of steroids again to 3.5 m.  My target for the next meeting with the consultant is 2m.  Then to be off them completely for the following visit.


Eating success today
reasonable proportion of cornflakes
Just sarnie for lunch - resisted the crisps
BUT ginger cake at work - two slices - emotions - buzzing, excited, adrenalin

The evening following the bike ride.
Emotions
Excited
Pleased with myself
adrenalin still from work (good day)

Little food in house as decorators here so no kitchen facilities and they had drunk all milk so cornflakes out!
So ate tin of tuna.
Then went to marks and had roll, crisps and tiny Malteser bar.


Bought good choice of food for tomorrow.
Home alone so this may have impacted how I ate.

I am having mixed success.  I fell much better but no big consistent shift really.
Disappointing.

Sunday at Vicky's

Had healthy brunch.
Toast, bacon, mushrooms, egg and tomatoes all grilled.

Then three wine gums on car trip (success- just three)
Apple (success as peckish)
Three more wine gums on the return trip.(sort of success when measured against previous behaviour)

Sandwich afternoon, Brown bread, ham, tomatoes and basil.
choc mint x 2

Shared some crisps in a bowl with Vicky.

Evening meal
Scrummy low cal goulash with cabbage and peas. Success
Turned down yorkshire pudding with meal (big success)
BUT had Vicky's leftovers again.  Big no no really. But Vicky did not want it to go to waste and I could not resist.
three fruit pastels while waiting for dinner.
Diet coke.
2 chocy mints for afters.

Was that an OK day.
Lots of good.
But lots of not so good.

But things to cut out:-
Eating Vicky's leftovers.
Chocy mints during the day.
Sweets.  Could cut out availability but not having them around.
Crisps - was not hungry but did not resist when offered them by V.
Exercise:-  Just gardening today.

Was it an OK Healthy Day?

Eating yesterday
Was it an OK day?
Breakfast and through morning - grapes and slices of ham.
Sandwich for brunch, brown bread ham, tomatoes and basil
Diet coke and shared pack of crisps at pub with vicky after walk.
Apple
Low cal gorgeous evening meal (7 o'clock) but had leftover from Vicky.
Shared box of Maltesers with Vicky but I had most and had the biggest last one.  Which says a lot.

Maltesers - I had the biggest last one. Could I change that in the future?

I knew that Vicky had got me treats for after dinner and really wanted to know what they were.  Didn't want to wash up first. Wanted them then.

Today I have asked Vicky to still get me treats but only smaller ones. Like a small bag of Maltesers between us.  I will need Vicky's help.

I know she has minty chocs left from a dinner party.,,,,,,,,,,,I will not tuck in but maybe have two after dinner tonight.

On the walk yesterday I say two Red Admirals - on March 23rd! A beautiful day.  I was in the boggy woodlands of Pirbright.

Well was it an OK healthy day?  I think it was a lovely relaxing day.

I loved the butterflies and the woods.

I won part of the battle at the pub - instead of coffee with cream and a bag of crisps to myself I had diet coke and shared a bag.

I wish I had done a little better with the Maltesers. 

It was an "OK" day.

Is it Time?

Is it?
This is how I feel about myself.
Rubbish about my weight. Rubbish. A failure. Addicted. I will never succeed.
If food is there that I like I want it. Then.
Grapes
Crisps
Bread and butter
Pretzels

I am trying to figure it out.
Crisps, Pretzels -the tangy flavours, smokey bacon, cheese and onion, flame steak, prawn cocktail.
Is there something in the tangy flavours I crave.

I am all over the place.  I want to feel healthy and good about myself.  I suppose I have made some headway.  I am keeping up the swimming and have rode my bike a little.  It is difficult at the moment as I have workmen arriving at 7.30/8am every morning and I don't want to come back and have a shower with them there in my house alone.  But it is always difficult.  Always something.

One other thing I am keeping up.  I am going to Hawkwood to sculpt and  carve.  I am in the middle of a feather at the moment.  I love it and really enjoy it.  The place, the tranquility, the birds, the people.  I want to use my new studio more and work on my other pieces.

Part finished feather carved from Box wood.

That I am dong the Weymouth swim certainly has given me motivation.  A target to work towards.  Maybe it would be good to have more definite targets.

So:-

I swim for Weymouth target and me

I carve for me

Vicky and I have booked a holiday in South of France in April

I am cycling a little

I garden a little

I am much more aware of what I am eating and why

I have steroids down to 4mm a day

Polymyalgia is still improving :-)

I am slowly making improvements - this is a start but not enough.

I want to:-

Look after myself more

Take time to enjoy the things I crave

Eat well. Eat well. Eat well. Eat well. Eat well. Eat well.

For me.

How did I do today?
Well food wise.
Cornflakes for breakfast and a small snack at around 11 (mini bag of pretzels.)
Then not so good.  We had birthday food left over from Friday at work.  Hot cross buns, chocolate cake, swiss roll, crisps.

I did OK.  I was tempted but did not have any until lunch time.  I had brought soup and croutons for lurch but I also had marshmallow and cake with it from the treats.

On a good note I had so much, much  less than normal.  It was a bit of a battle and every time I went past them I had a struggle not to eat them.  I will ask everyone again that we keep treats and snacks away from the areas we pass by all the time.  It makes it so much more difficult.

I have done well in the evening.  Although I have bought biscuits for the workmen at the house and that I have thought about food a lot I only had my planned small evening meal.

The day had a number a worrying events and I have thought about food a lot. On the whole I have done OK.

Today I have a lovely day planned.

I am going to my studio to work on the arch and feather for Liz and Hazel.  Wales play France for the Grand Slam. Maybe a bit of gardening.  Sorting the paints for all the decorating to be done next week.

But food. what are the ways forward for today.  I have had toasted hot cross bun for breakfast. It is now around 11.15 and I am peckish.  Vicky haas left for a night away with friends and I wanted her to have another bun so that I could too.  It seemed OK if she did.  But she didn't want one - so I didn't.

I have apples so I will have an apple.  A Cox so it should. be tasty.

I did. It was at best OK.
I want to exersize much more often.  I have Daisy today to look after.  She can't be left alone and only walks a little bit before she want to go back (she is 104 in dog years). I will take her for a walk and maybe leave her in the car for a bike ride later.

Forty Two Pounds: Milestones - Eating in a New Way

Forty Two Pounds: Milestones - Eating in a New Way: Mmmmm. Well this will take some thought. I have a better understanding. I do notice when I eat because I am a "little bit"  something.  T...

Day Two

A goodish day.

It started well.
I swum this morning 28 lengths.  I am swimming the "Weymouth Mile" on the 17th of June with Sian my sister.
This is equal to 64 lengths.  Last week I swum 30 lengths in the pool.  Weymouth in June  - the sea will be cold.  Will I need a wet suit?

My main concern is that if there are lots of waves it will be very difficult along with being COLD.

Food wise I ate cornflakes for breakfast.  Apple with soup and croutons.
I got very hungry as I shopped around waitrose.  I bought a healthy mix to keep me going, nut, dried banana etc.
It would have been better to have not got so hungry because that makes me eat more - even when I am no longer hunger.
Once home I had small pot of rice pudding, two pieces of toast with sardines another piece with jam.

I need to use more energy than I eat.  I am not sure if I have done this today.  But I may have.  My belt is very tight and generally I am uncomfortable in my clothes.  I have to undo the bottom button of my shirts when sitting at work

Last night I got quite excited looking at cycle events.

The one I am most excited about is the London to Brighton night time ride.  I love the idea of Breakfast on the beach after cycling all the way.  The distance is around 100km.  I have sent the information to Sian and Alison and hope they are interested. This is the link :-  http://www.moonriders.co.uk/charities.php

I have eaten to help me emotionally recently. A lot.  I can see that it is no use, is extremely temporary as a quick fix but still have done it.  I am finding it very difficult.  The planning that I had started to do has dissapeared.

One piece of great news is that the Polymyalgia does really seem to be disappearing.  I am only on 4m of steroids now which is FANTASTIC!

I have another piece of good news.  My sister and I have actually signed up for the Weymouth one mile swim and I have been swimming in preparation.  I think my niece Amy may be swimming as well which will be great.  We have lots of support coming along so it is something to really aim for. On Tuesday I did thirty lengths and yesterday twenty four.  The twenty four I swum quite intensely so it was a good work out.

Sian and I are also completing a 42km bike ride in May - hopefully Alison (another sister) will join us.  I did my first half hour bike ride of the year on the weekend so that was a start as well.  The wonderful thing was that last year when I rode a bit - to get off my bike I often had to lie it down on the floor and step out.  With the Polymyalgia I could not lift my legs enough.  This week though almost without realising it I just "got off".  I am generally able to move about so much better, run up the stairs, jump down off the work table around Nutkin my boat.

This is starting to make a difference in my life.  I am feeling better generally.  Wow - is there a chink, a glimmer of light that I could make a difference to myself.

Day Three - Dance it Out

My goodness this makes me giggle.  Trying to learn the moves takes a while and as I try to do this it just makes me laugh.  I am definitely warm afterwards but don't feel like i have worked out physically.

HOWEVER - I do feel energised and happy.  There's a lot to be said for that alone.
The main thing is how still and inflexible I have become.  This is due to the illness I suddenly developed called Polymyalgia Rhumatica two years ago.

It was very frightening and I would have classified myself as disabled at first.  It as eventually diagnosed and steroids had an immediate impact.

However putting on wieght is a side effect and the illness has made me very immobile.  I have the dose down to 4.5ml though starting this week from 15ml.

Logging Miles on a Bike

I found this interesting site.  I joined up but of course have nothing to add just yet!

Anyone can join  and I have.  When I cycle I just type in the number of miles and we all have a running record.

Day One

Forty Two Pounds
That's my aim. To loose forty two pounds.

I have been gradually putting on weight.  Feeling uglier and uglier.  Trying, trying, trying.  But not really getting anywhere.

Have got  my self some help.  I notice much more that I eat occasionally because I am hungry but very often I am not hungry at all.

I have noticed I may be:-

• a little bit bored
• a little bit lonely
• a little bit low
• excited
• celebrating something small I have achieved
• celebrating completing a chore
• a little bit worried
• a little bit frustrated
• needing a little break
• needing a little reward
• offered food
• encouraged to eat

I will add to this list over time.......

The word "little" is often in there.  I had heard of emotional eating but did not class myself as an emotional eater.  However I can see that my emotions do not have to be BIG to make me want food.

Want food, think about it, anticipate it.

Find it very, very difficult to resist.  Am I addicted?  It feels at the very least an ingrained habit.  A track that goes in once direction and I try to get off but end up staying on.

The track is a road to unhappiness and poor health.

It is likely to shorten my life.  I want to take a new junction.  I need to really.