Tuesday, January 13, 2009

Reporting....

I have been. I am home. And it was good. I have hope.

Yesterday did not get off to a great start. If I tell you I was doing the washing at 1am and putting things in the dryer at 2am you will get the picture. I did not sleep much. I went off to physio and shot through all the exercises, and have discovered that the wobble board and I can do great things if I am not wearing trainers! I stayed on balancing for between 5-10 secs, which may not sound like much, but given that my previous record was 0, it is a superb improvement. Those toes can grip hard.

It rained all day. I arrived looking like the wild woman of Borneo. Rain and long straightened hair do not combine well. And never wear suede boots when it rains. The boots and the socks inside them were sodden. I was a picture of stunning-ness. Especially when I took the boots off. Sigh. I need to work on the image. And never get on the scales wearing sodden suede boots and socks. I swear they added 10kgs to the weight.

Jackie was a true star. She drove and she also stayed with me through the appointments and took notes. And asked questions. And was generally superb. I am so lucky she is here. She is also the one who found the hospital after doing much internet exploring for me.

It took 2 and a quarter hours to get there, but the journey both ways was fine. Wet, but no traffic problems. And the hospital is right in the centre of Bath. Just round the corner from the Roman Baths, and in the middle of a wonderful shopping district, full of narrow lanes and unique shops. It is very old. The hospital, I mean. We sat there waiting, imagining what it was like when it was first built. Imposing staircase and all. I did seem to be the youngest person around, but that was just fine.

And then we met the first of the 2 doctors. Amazing. The doctors both clearly love their work, they smile constantly, but real smiles, and they both told me how well I was doing, and how hard I must have been working. This was the very first time a doctor had said I was doing well. Wonderful.

Anyway. After 2 hours of questions, prodding and poking, having to imagine things and talk about what I am imagining and all the rest, the second doctor (who is actually a consultant nurse with a PhD in her speciality which is CRPS and who is one of the heads of the clinic) said I will be going in for a week of intensive therapy and they will do all the thermal imaging etc while I am there. They will train me to do all sorts of exercises to improve my mobility, and deal with the pain. I will be working with physiotherapists, hydrotherapists, cognitive therapists, doctors, etc. They watched everything I did, and pointed out some things I am doing subconsciously which I need to work on immediately.

I refer to my leg as "it", or "the leg". A separate entity. I hide "it" by wearing trousers/pants deliberately, so I can't look at it. I pretend it is not there. I think of it as having a mind of its own. I have detached it from my body. I protect it by always sitting where it is furtherest away from other people. I arrange everything subconsciously so that it is shielded. I seat guests to the right of me. I arrange my cooking so it is all right sided. I sleep so that the leg is protected. And you know, it may sound ridiculous, but it is SO RIGHT. I have to change things. I have to wear skirts. Look at the leg. My leg. Touch my leg with different textures 5 times a day. Actively change how I see my leg so that it becomes part of my body again. This I can do. I am short-circuiting the neural pathways that have evolved.

And the mirror. This is fascinating. I sit on the bed with a mirror, a long one, between my legs, so that I can see the whole of my right (good) leg. Then, in the mirror, I can see 2 legs just the same. Good ones. And I have to do some exercises, looking at the good left leg in the mirror, even though my real left leg, which is hidden, may not be doing quite as well, my brain is seeing two perfectly good legs working well together. It is hard to explain, but it is simple and so effective. I have to do this 5 times a day at least. This I can do too.

They say that it is rare that they see someone at the beginning stages of the onset of CRPS. They usually get referrals after all else has failed, so this is fairly unique for them to have the chance to work with someone at the start, relatively speaking. I know that there is a chance it may never go away. But, if, 3 years down the line, there is no improvement, I will also know that I have done everything possible to heal myself. I am SO lucky to have this chance.

There was loads more, and although you now know more than you may wish to know about what I am doing, it is good to write down the fact that I have hope. I have already learned new things. I can help myself. I can do this. I am wearing a skirt, even though the leg, my leg, is cold.

I fell asleep in the car on the way home. So tired. Totally drained. But smiling. They said my attitude was superb. That I am not a victim. That I actually sought them out myself, and got my GP to refer me. That I am willing to push through the pain and not let it stop me. That there is a possibility that I will heal, because I believe I can.

So, if you see me refer to "the" leg, or "it", please correct me. Yell, if you have to. I have found a place which specialises in what is wrong with me, and it is all good. It may be excruciatingly painful, but it will work. I will keep believing.

I have hope!

21 comments:

Penless Thoughts said...

What a wonderful report, Linds!!! I just saw a piece on TV about using the mirror with patients who have lost a limb or arm and have phanthom pain. Using the mirror, as you describe, eases that pain. What an amazing MIND God has given us. You are a trooper and a fighter and you will be victorious!!!
Susan

Laurie in Ca. said...

I am so pleased with your report Linds. Keep smiling and keep HOPE. Corky almost lost his right leg from above the knee down 34 years ago due to a terrible truck accident. He used to refer to it as his bad leg for many years. We call it his gifted leg as he had to train his mind to get it to work and be able to walk again. The mind is an amazing thing and your outlook is great and full of hope. I am with you in this journey.

Love and Hugs, Laurie

Dawn said...

I woke up thinking of you this morning am so very happy to read this wonderful report. As you say, the mind is an amazing thing and God has put us together in such an awesome way. The doctors and nurses sound wonderful - what a blessing that you have found this place.

Every time you talk about Bath, I am tranported back to high school English class - our teacher was marvelous and we intensely studied Canterbury Tales. We each had to do a project and memorize a section and I chose the Wife of Bath section to memorize and to make a doll depicting her. The memory is also an amazing thing - she was my favorite teacher. Although I must admit I have no recollection of the memorization!

txmomx6 said...

Oh, Linds .... I am so proud of you.
And so thankful for your day.
And for your beautiful legS.
Janine

Vee ~ A Haven for Vee said...

This certainly was fascinating. Now I'm going to pay attention to how I speak of myself and how my mother speaks of herself...

You deserve much encouragement for being such a trooper through all this and, right behind you, I'd like to hug Jackie for being made of true friend stuff.

Watch out for those gripping toes on the wobble board. We don't want them to become a step removed.

Hope that you have been getting some good rest today...

Donnetta (momrn2) said...

Your attitude is amazing! Yeah that they have things to try! Yeah that you have hope!

It sounds like it was a long and grueling day. It sounds like it was a good day. I'm so grateful...

Joyful Days said...

You have such a good & strong heart!! I can "hear" the smile through the internet--from your keyboard to my screen.

You've given me some positive tools that maybe I can use to focus on, especially this week.

Thanks for being so transparent through all of your ordeals.

Many prayers for healing,

Julie

Janine said...

Your treatment regime sounds fascinating. It looks as if they have covered all aspects of the "problem" and it must be wonderful to have competent people taking care of you. If anyone can overcome this then it is you. Hang in there.

Needled Mom said...

Oh Linds, I am so very happy that the trip was wonderful and the report encouraging. I know you have it in you to work on this as the results will be so worth it. Persistence pays off -- good for you!

Edith said...

Hope is a good thing! Hang in there - keep working at it.

Can you explain what CRPS? (Maybe you did already and I missed it..sorry)

Have a blessed day.

Olson Family said...

Throwing out a "Hallelujah".

And if you are ever feeling discouraged, come back to this post and re-read it.

So glad God has led you to Dr.'s who are understanding and enthusiatic about helping you!

Stay warm! Susan

Lisa Marie said...

AWESOME Linds!! Great news, I knew you could find the help that would work for your situation. This is wonderful and so is your attitude, now keep it up, push through this and lets see what will happen. Only good things I'm sure. You are a fighter and this WILL work!

Sandra said...

Linds, I'm so happy that you have hope and that you met with such wonderful doctors.

I know you'll get through this, you have an amazing positive attitude and that is half the work done.

Hugs,
Sandra

Barb said...

Attitude is everything, and HOPE is even more, Linds. Wonderful news.

And...it's always a good thing to be the youngest person in the room. At our age, that's pretty rare. LOL

This is such great news. You sound so positive.

Mary said...

Great report. Very positive and full of 'doable' therapies. Congrat's on beginning to master the wobble ball - that in itself is 'WELL DONE!, not to mention braving a skirt - Brrrrr.

Photo please - show us your beautiful knees - please.

Dawn said...

It's now 9:30 p.m. over there, I believe, and I am wondering how your day went.

Crystal said...

You are an amazing woman - with beautiful legs :)) Thank you for giving us the full report and asking for our help. I will be praying for you daily, my friend - God wants this for you, His precious child. And your granddaughter will soon be here to encourage you even more! ((( HUGS)))

Diane@Diane's Place said...

Yay!! Finally some people who acknowledge that you have a real problem and are eager to help you work on fixing it!

I'm so happy for you, Linds. I just know God is already answering our prayers for you, and I'm so thankful. :o)

Have a great week, my friend.

Love and hugs,

Diane

Judith said...

Linds,

I tried leaving a comment. Do not know where it went.

Am so happy hearing the hope in your words. Any leg or knee trainer would love working with you. You did well, Linds, very well.

Butterfly Mama said...

WOW! I'm so glad there are things you can do. I know it will be a tough road still, but you can do it. If anyone can, surely YOU can! You are so wonderful, truly. Hope all goes well...I really like the mirror exercise to trick your mind - brilliant!!

Many hugs and much love,
Heidi

Barbara said...

CRPS - what is that Linds?
Glad you have found some specialists to treat it whatever it is.

I know you will hang in there.Maybe I should not be lazy and check the internet.

Best wishes and blessings anyhow.