Tuesday, April 28, 2009

Tuesday ......(I am beyond thinking of snappy titles)

Hello. This is a robin in the holly tree. I know it is a robin because it is looking at me, and the red is visible. It is not an ostrich, a duck or a seagull. My knowledge of birds is legendary, and tends to fit into a simple category thingy, devised by me. Small, Medium or Large. Brown, Black, Duck, Seagull, Ostrich. With a few additional variations, like Stork or Swan. There is a very large gap in my education you see. Possibly because I was brought up on the coast in a different hemisphere, and THE BIRDS WERE DIFFERENT. Ok, Janet, a chaffinch not a sparrow. Small and brown is just fine. See? My system works.

I have:
  1. Been for a walk
  2. Done my exercises
  3. Been to hydro
  4. Watered plants for a friend
  5. Let dogs out for a friend
  6. A headache
  7. Need to have a snooze......................

We are starting to compile a booklet on CRPS for patients at the moment, and David, bless him, copied the entire existing out of date booklet into a word document to give us something to work with. This will take time, and hopefully we will have a version for doctors too soon. That ultrasound one I had the misfortune to run into before Easter could do with one. Or a hundred. Did I mention the ultrasound???? I can't remember. Sigh. I think I tell people things and then discover that I have but only in my imagination.

Margaret, the garden fairy has just popped round to tell me the allotment soil is excellent to work with at the moment. After the torrential rain we had yesterday. So I think that could well be where my son will be tomorrow. I will be sitting in the garden chair supervising. I may wave a rake around from the chair. May.

I have been reading about the 30 Day Shred which half of Blogland is doing at the moment, so I thought I would see if the DVD was available here. Sadly it is not. Not yet, unless you happen to have a multi-regional DVD player thingy. I don't. But after reading this and nearly losing the ability to breathe, I was laughing so hard, maybe I should be thankful. Seriously, the tears of laughter were flowing freely here, and then I started reading the comments and it nearly finished me off totally. I looked like a racoon. Our Sophie has a definite way with words. Oh to be a fly on her wall!

So on that note, I will leave you all and go and have that snooze. Happy Tuesday!

Sunday, April 26, 2009

A Sunday in Spring....

The sun is shining, and I have had a lovely slow day. I woke and lay in bed a while watching all those energetic souls running the London Marathon in perfect conditions this morning, and then spoke to my daughter on Skype. And then I watered my garden, and marvelled at all the growing seedlings, cooked lunch for my son, while half watching the Grand Prix from Bahrain and settled down to read one of those books waiting for me.

Then Glynis and Peter arrived with an invitation to join them for tea, and off we went across the valley to a lovely favourite place for tea/coffee and scones (yes again!).

The oildseed rape is out in full flower already, as you can see, and the countryside around here is like a sea of yellow. And when the sun shines, it dazzles the eyes.

Home again, after browsing round the little shops, and I walked out into the garden to enjoy the lovely golden late afternoon sun, and saw this sparrow up in the apple tree. Isn't the blossom beautiful?
And don't tell me if is isn't a sparrow. It is a little brown thing with speckles. That will do nicely.

Lots drifting round in my mind - the Compassion Bloggers have arrived in India, so please pop over and read their accounts of their experiences, and, if possible, consider sponsoring a child too.

Dreams, ideas, thoughts and fears. The stuff we all have going on. Today, however, is the now we need to focus on, and so I am off to curl up with that book again, and rest. Enjoy the rest of your weekends!

Saturday, April 25, 2009

That went well then....

Remember the pacing I am supposed to be doing????? Take it from me, I have failed this part miserably. I just will not be sensible. I do not think. I am certifiable. Stupid.

I know.

And just for good measure, the "get rid of it" is at war with the "waste not" part of me. So we are all balanced and happy and completely calm and measured here at the Casa de la Rocking Chair today. Just peachy.

The day did not start well. I got up and the heavens opened. Rain was the one thing I had not bargained for, and did not need. So all the pancakes were in vain. Eaten with delight, but the carbo-loading was unnecessary because the sheds could not be emptied in the rain. I am a fair weather "sorter".

It did brighten up later, so I started moving logs, and then sort of crushed a finger. This was inconvenient to the extreme, but did I stop and relax and read or twiddle my thumbs??? Did I heck. Did I call the son to come and do the work? What do you think? He was upstairs and I was in the garden. It was too far to walk. I am full of warped logic. Then I decided to sweep the one shed. With a dustpan and brush. Bent double from the waist as I can't kneel. So the hunchback of Notre Dame has nothing on me right now. If I go and relax on the couch, I will still be there tomorrow. Probably for the next 2 weeks.

And then I somehow managed to cook for more than we needed for supper. Remember the waste not bit?? I can now not even summon up a waddle. Groan. Pacing? Moderation? Sense?


I have lost the lot. And the plot.

Excuse me while I hobble off to see if there is any hot water. I need a long soak. And an intravenous dose of common sense.

Friday, April 24, 2009

Another week flies by...

The sweet sweet smell of Spring is beginning to drift over the garden. My lilac is starting to bloom!

How is it possible that another week has flown by so quickly? Today would have been my Dad's 86th birthday, and it is incredibly hard to think that it is almost 9 years since he died. It seems like just yesterday at times.

Tomorrow I think we will have pancakes for breakfast. It is Saturday, and I have a great many things in mind for the son to help with, so I do believe a little bribery may be in order. Pancakes should do it. And maybe the pancakes will inspire me to come up with something worth reading as well.

Wednesday, April 22, 2009

Sun and fun in the garden....

The weather has been stunning. Sunny warm days and clear blue skies. Perfect gardening days, and the garden centres are full of people and the recession seems to be a long way away. (Unless you listened to the Budget for the UK today - totally depressing, let me tell you.)

Back to the garden centres. A friend and I popped along to visit the brand new Garden Centre which has opened in the next village, on Monday, and it was a total delight. Especially when we discovered that the restaurant areas (indoors with lovely leather couches, in an atrium, and outside on lawns) are all waiter service. Sigh. This is very rare here in the UK, let me tell you, and I just love it. It makes going out for coffee a real treat. Not to mention the fruit scones just out of the oven. I do believe I will become a regular. A very regular visitor.

I am old enough to remember a time when all restaurants had waiter service, and self-service was a new fangled idea. And now, given that I am walking with either a crutch or a stick, balancing a tray at the same time is a non starter. So this was a lovely discovery. Perfect for all our mothers as well, as we discussed while sipping our coffee. On the couches.

This garden centre also has a wonderful butchery and fresh produce market, and their cheese counter is amazing. The plants aren't bad either! So that was great. So great that I was back there again this morning with another friend for more coffee and another fruit scone. It is my civic duty to spread the word, after all. Never mind the spreading of the hips.

My seeds are all growing beautifully. My little greenhouse is full of green things, and so are the window-sills in the house as well. I do love spring. And, the apple tree is now covered with blossom. So the outside is doing just fine. Indoors is another matter altogether.

Diana is arriving soon for a few weeks holiday, and I would actually like her to be able to walk in the door and think that the house was nice and organised. Mind you, she may just think she is in the wrong place if that were to happen. Everywhere I look, I see things which need to be done. I need a cleaning lady. It is just impossible for me to climb onto the counters and clean the top of the windows and other such things. But I have to say that cleaning ladies would also refuse to do those things too.

I just have too much stuff. Stuff. It is everywhere. So I look at it in the morning, and then hobble outside and play with the plants instead. I really need to have a plan. Maybe I should finish reading that book I got ages ago - From Clutter to Clarity. I think I read a chapter and then sort of got distracted. I clearly need the discipline, and a whole lot of clarity if I want to lose some of the clutter.

Oh well. Tomorrow is another day, and guess what....it is going to be sunny yet again!

Monday, April 20, 2009

Spring means change.....

It is Spring. That means cleaning. Throwing out stuff. Tidying. Sorting. De-cluttering. Or is means that it is time to get out in the garden, plant things, water seeds. I seem to be in the middle of all the above.

I woke late on Sunday and decided that my room needed sorting. Well, that could have something to do with the pile of clothes on the table at the end of the bed which threatened to rival the nearest mountain for height actually. The average British house has very small bedrooms, people. VERY small. And all my furniture came from South Africa, and some of it belonged to my grandparents, and so it is sturdy, oak, old, heavy, and very large. So large that, with 2 chests of drawers in my bedroom, and a bed and bedside table, it was almost impossible to open any drawers. Not ideal WHEN ONE WANTS TO WEAR THE CLOTHES IN THE DRAWERS. Sigh.

Enter the son. He is home for a month on his spring holiday, and he is large and has formidable muscles. So there we were, the 2 of us in my small bedroom, and I was issuing instructions. Then we ended up with the queen size bed wedged firmly at an angle.


Plan B was not successful either - those heavy chests of drawers moved all round the room, and in the end, we had to stand the bed on its end to get anywhere. I helped a little now and then. He did most of it. I helped by making suggestions which he was not always happy to hear. Mothers are always helpful like that.

And in the course of the Great Change of the Bedroom, we had many rests and pauses for me to go through yet another pile of clothes. There are now 5 garbage bags full of clothes in my car, and I have not started on the cupboard yet. And today, another friend popped round to help Muscle Man to bring a huge chest of drawers down the stairs, because it is on its way OUT. Yes, I know it is old, oak and beautifully built. It is just too big and takes way too much space and holds way too little stuff.

We will swiftly skim over the 6 inches of dust which I discovered under the bed. My poor old Dyson had a hayfever attack. It was touch and go, but he recovered enough to get rid of most of the dust and is now on a holiday for a few days. Poor old machine. It is one of the very first Dysons. A pensioner.

So that is what I did yesterday. I was up and down those stairs way too many times, and today am paying for that. I look like the hunchback of Notre Dame. But the bed is moved. Not ideal, but better than before. I can also open the drawers. I can access my clothes. Progress indeed.

Thursday, April 16, 2009

Make overs and other such things.....

Part of growing slightly older is the fact that one's arms shrink. So the art of reading is more challenging. Sigh. So I went and had my eyes tested and now own varifocals once again. The last time I had the eyes tested was in 2002. And yes, I got varifocals then too. Only they broke and Geoff tried to fix them with superglue, which unfortunately messed up the lenses, so they were binned.

And I never got round to replacing them for many reasons, but the chief one was the outrageous cost, given that 99p reading glasses worked just as well. I did upgrade to £5 reading glasses when I discovered they were infintely more robust. You can tell that I am not brilliant at spending money on myself. Something the people at Bath also noted and told me to improve. All very well, providing one has the cash in the first place.

Anyway, where was I....... I have just collected the varifocals, and they are great for reading, and for the computer, I concede. However, the distance part is not right, so I will have to take them back and get it checked out. Or revert to wearing them on the end of the nose.

And I stopped on the way out and looked at the makeup. Not the Christian Dior makeup which was used for the makeover.....did I tell you about that one?? I don't think I did......

I was told in Bath that I had to focus on me. And that I had to pamper myself. That I had to forget the world around me, and be kind to myself, and that I was the important person now. This may sound simple, but it is very difficult. I have been a mother for 32 years, and a fixer of other people, and I look outward, not inward. So they told me to "go on - get out there and buy some frilly underwear, and have a free makeover at the department store, and have my nails done, hair cut...." You get the picture. I had to go out and do something. Anything. (They also want a list of things I do for myself in the 3 months before I go back.)

So I went to BHS and bought some underwear. This was not a roaring success. The underwear I bought was too ordinary, not special enough. So I failed on that test. Hmmm. I thought it was fine.

So I popped in to the department store, and told the Christian Dior lady who looked incredibly classy and beautiful, that I had been told to come and ask for a makeover. That I was an "inmate" at the Min (the hospital) and that I needed to look stunning. She grinned and said she would do that with pleasure.

I was quite a challenge, people. I had spent 2 weeks in hydro, and you do not want to know what the hair looked like. Frizzy and dried out and I was wearing tracksuit pants and an old sweatshirt, had no makeup on, the highlights were long gone, and I had my stick. Stunning. Of course. Did I mention that the people in Bath seem very elegant? Well, I felt like a bag lady when I was out and about. I really did.

So there I sat and she put on the makeup. Did you know that you are supposed to put your liquid foundation/base on with a BRUSH??? Huh?? When did that happen?? Anyway, she did a wonderful job. She asked me if I used a serum. Um, no. Oops. I thought that was for snakebite. And a special eye cream day and night?? Ummmmm.....no. She sighed. So did I. And when I was "done", I asked how much the serum cost. I need help here because right now I look 110 years old - wrinkled and prune-like. £97.00. Well, maybe not. And the magical foundation? £58. Nnnnnno. Perhaps that can wait. I ended up buying a lipstick. And because she was so sweet, and perhaps because I said that she really had made me feel very special, she got out a bag and tossed in a whole lot of samples, including a mini eye palette.

And I hobbled back to the hospital, and they were all waiting for me. I passed that test. The makeover was a success. My shopping trip for makeup was a fail. The new lipstick did not cut it.

So back to today. I was in Boots, and I stopped to look at the makeup, and I remembered that the lady in Bath had said I need to put on eye shadow with the stubby short-bristled eyebrow brush. A brush I never knew existed. Well, I found one today, so tick the box..... I did something nice for me. Myself. Now I have to learn how to use it the way she did. But at least I now have glasses to hide any disasters. Or do they magnify them?? Anyway, I have the brush. They also had a foundation-putter-on-brush-thingy too, but that was over £20 which seems totally ridiculous, so we will continue with the fingers as usual.

I will never look stunning, but hey, I have a new eye brush,lipstick, glasses, and BHS underwear so far. And don't forget the hair - that is cut and coloured.

Heaven knows what will be next....

Wednesday, April 15, 2009

Getting my bearings.....

I am finding it very hard to slot back into a blogging routine, people. Verrrrrry hard. In fact, scratch that. I am finding ANY sort of routine impossible at the moment. I am extremely bad at "pacing" and I am extremely bad at relaxing. I am also unbelievably emotional right now and heaven only knows why. This does not help matters when the slightest irritation is likely to result in floods of tears. And today has been a succession of irritations, believe me.

I can't even blame hormones.


My son is home for a few weeks, and so there is a body in the house. I love my kids. I have just forgotten what it is like to have them around. They are large and have stuff like washing, boxes, bags, and STUFF. And appetites. There are crumbs. And these things make me smile, so stop worrying. I am not losing the plot.
The Easter weekend went by in a flash and now we are back to normal again. The weather has been great and I managed to spend some time in the garden yesterday. I have become quite used to not having the computer on at all during the day and in a way, I don't want to go back to the way it was. Pacing remember. I just feel a little lost at the moment. Stuff like gardening is real and easy. So maybe I will stick to that for a while. And in a few short weeks. my daughter will be here. I can't wait.
I will breeze in and out till I get my bearings, so don't go too far. It may just take some time.

Monday, April 13, 2009

You have to watch this one....


Britain's Got Talent is back again, and just listen to this. This song makes me cry whenever I hear it - it is a song which articulates so many emotions, and those last words -

I had a dream my life would be
So different from this hell I'm living
So different now from what it seemed
Now life has killed the dream I dreamed

never fail to make the tears fall. And this lady??? She made me cry even harder for so many reasons.

Saturday, April 11, 2009


Just zapping in to say I am PLAYING WITH A BABY GIRL who happens to be my grandchild. I will be back later. She is squealing. Granny is coming sweetie!!!!!


Tuesday, April 07, 2009

Exercise and other activities.....

I smell of chlorine. I have been swimming. Well, I have been to the public pool, and even though it is the school holidays here and it is normally manic at the pool during holidays, I have discovered a little hour of relative quiet.

How? Well, I have started going to the Over 50s swim session. And if you thought for one minute that you just get in the pool and swim, you have never been to an Over 50s session.

Neither had I, until last week, but, mindful of the instruction to do the hydro exercises at least 3 times a week, I thought I would check out the pool. I should have known what was coming when I battled to understand how the lockers worked, and there was a rush of people eager to show me how to make them work.

Anyway. I finally manage to sort myself out and head for the pool. I get in, clutching the pool noodle and the board I need for exercises, and immediately, people stop in the lanes and look at me and say..."Are you all right, dear?" "Yes, I am fine, I just need to do some exercises." So I wade into the water to the depth I need to be which happens to be up to my neck, plonk the bits on the side, and start jogging on the spot.

"Hello, dear, you are new, aren't you?" And I jog on, chatting to the lady who asked. "Yes, I am, I just need to do exercises." "Ooh - what sort do you do? Are they easy? I hate the gym." "Well, yes, they are quite simple, but I have a wonky knee and...." "Ooooh! GILES!!!!! This lady has a wonky knee!" And so help me, half the pool swims over to discuss knees and their wonky bits. I am now trying not to laugh hysterically, and they all want to know the details. I am very brief - "I hurt it turning too fast", I said. You have no idea how many assorted medical things I learned in all of 5 mins. And all the details. Bless them all.

After 5 mins or so, they resume their swimming. Meanwhile I have discovered that the bottom of the pool is shiny tile, and I slide everywhere so I look like a demented whale caught in a whirlpool as I try to do my hands-on-the-hips-turn-from-the-waist-back-and-forth-thingy. The feet go everywhere. I submerge. Spluttering and gasping, I pop up, and you got it, there are the other OVER 50s. "Are you all right, dear??" "Yes, I am fine, the bottom seems a little slippery though." "Oooooh, dear, you need some of those pool socks. Our Albert swears by them!". Hmmmm. I need pool socks?? Albert???

Well, after attempting to cross the pool, doing my lunges, and stopping every lane or so for a chat, as I slip and slide, they could have a point. Pool socks could well be in my future.

They are all very sweet there, I have to say. They all seem to know each other, and there is much laughter and chat. And they are very friendly too, so one definite requirement seems to be the ability to tread water for a long time, because the chatting tends to take place in the middle of the pool, and in my case, in the deep end. Still, treading water has to be good exercise, doesn't it?

And breast stroke seems to be the order of the day. That way the heads stay out of the water and the talk continues as you swim. I swear they could represent the country in formation swimming. They paddle down the pool in a synchronised way, and chat as they go. The earrings stay on, and the hair never gets wet, and they are all loving every minute. I have now been 4 times, so I am included in their little circle now. I am A Regular. And I am in formation as well. When I finish the exercises. Head out the water, chatting as we go. They don't ask so many questions, but they all stop and chat. Some are even trying some of the resistance exercises, give me strength. I may have started something.

Over 60s in this county, get to go swimming for free, and believe me, they are making good use of this. So any ideas I may once have had about minding my own business, doing my exercises and getting out fast have evaporated. It takes twice as long, but I get out grinning, and if I miss a session, they would want to know why.

There is also a gym upstairs, and I may have to go and investigate that too. And, as things happen, I had to go to the surgery this morning to be weighed (that was not one of my finest moments) height measured and B/P taken. Why?? Well, my doctor is prescribing "activity" for me. So I will be getting prescribed gym membership because there are no hydro pools around here. How great is that??!!

I wonder if there is an Over 50s session in the gym???? I am becoming rather fond of Over 50s things! I am, of course, Over 50 myself.

This could be fun........

Monday, April 06, 2009

A last word re the CRPS (for now!)

I didn't write the CRPS post below to elicit sympathy, my friends. I wrote it for a number of reasons.
  1. To tell you a little about CRPS.
  2. To let you know a little more about the programme at Bath.
  3. To inform any would be investigators out there that just because people look normal, it does not follow that they are fit and healthy.
  4. Because I was appalled that every single comment in that article seemed to think that the man was a fraud and lying about his condition, and because none of them had a clue what CRPS actually was. They even called on the judge who awarded him compensation to resign.
  5. I am sick to death of having to explain CRPS to people I meet in the street. The eyes tend to glaze over, and I can see the thought...."she has lost her marbles" flash through the brain. I usually settle for "I am fine, thanks" or "I have a wonky knee." This is also one of the reasons people with it start to withdraw from social events. Like me.
  6. The implication out there is that we are malingerers.
  7. I spent the last few days in Bath just hoping and praying the consultants would walk in and say that they had made a mistake and that I didn't have it after all. I would be more than thrilled if they had decided that they had made a mistake. They didn't.
  8. Every person who reads what I wrote is one more person who will understand better, and perhaps be able to spread the knowledge about a little. Knowledge is a powerful thing.
  9. CRPS or RSD needs to be out there in the public more. That way there will be more money for research and hopefully a cure one day. At the moment, there is no cure.
  10. When I get miffed, the fingers fly. I just emailed the paper. Let us see if they manage to respond.

There. That feels better, she says, dusting off the hands. I do believe I just entered warrior mode again.

Sunday, April 05, 2009


Complex Regional Pain Syndrome.

Not nice. It is also known as RSD. It is relatively rare, and there are approximately 11,500 people who have it in the UK. It is often mis-diagnosed, or not diagnosed at all. Remeber all those trips I had to make to A&E and the doctor???? It is also completely misunderstood and at times it is hard for people to believe the pain involved, or to realise the ramifications of it. How do you explain pain? How do you try to get people to believe how debilitating it actually is when you are trying with everything in you to ward it off, stop the progression and manage the pain?

I have just read an article about a man who had accidently cut his hand at work, and subsequently developed CRPS and he has just been awarded £400,000 compensation. What troubles me more than anything is the fact that there are 52 comments re the article, and not one person has any idea of what CRPS is or what it means. They vilify the man and the judge.

They DO NOT HAVE A CLUE. Come and visit me, Daily Mail, and I will explain a few things to you. I can show you my swollen leg, and you can marvel at the fact that I have one leg which is ice cold and one which is normal, and one leg which is red and one which is normal.

You may assume that I am a little peeved. You would be right. I have CRPS. I have been lucky to be diagnosed fast, and to start the treatment quickly. Believe me, you do not want to get this. But if you saw me in the street, you may just see a woman who is walking a little oddly, maybe with 2 sticks. Maybe with a crutch. Maybe with nothing. I may seem totally normal to you.

What you would NOT see is what is going on in my head and my body. You would not know the effort required or the determination needed to do the small things which comprise normal life. The exhaustion the effort required causes. I will not let this beat me. I will make every effort to walk normally. Drive. Potter about my house or garden. Go for walks. I have to do all these things. If I don't I will lose the ability to do them. At all. CRPS is progressive. I am not going to allow progression.

I went to Bath to the Royal Hospital for Rheumatic Diseases, and an intensive 2 weeks CRPS course. This is the centre of excellence for CRPS in the UK and it is internationally renowned for its research and treatment. There is no better place in the UK. I was so lucky to be given the chance to go on the course, and it was wonderful to have so much expertise available to help me learn to deal with CRPS. I had one-to-one sessions with occupational therapists, physiotherapists, the psychologist and the amazing team leaders. I took part in screening, tests and research. I also met 2 wonderful woman who are further down the road with CRPS and we all learnt from each other.

Best of all was not having to explain. They knew. They all knew the disease well and they understood. The simple fact about my CRPS is that I injured my knee. And my sympathetic nervous system was damaged in some way and it is now malfunctioning.

I feel real, appalling pain. However, the reason my nerves started transmitting pain signals , when I damaged my knee, is gone. The knee got better. The nerves are locked in the screaming pain part and did not subside after my knee healed. This is not in my head. It is in my leg. The pain continues and it never ever stops. Never.

However, I have to do the intense physio, the hydro exercises and the relaxation techniques, the desensitising and I have to keep moving. My leg doesn't work like it used to work. It feels as though it is badly damaged. But, I have to ignore that and move. So I am at war with my own body in a sense. I am over-riding the signals I have trusted for 54 years. I can't believe what my brain is telling me. This is unbelievably difficult. Hopefully, if I keep doing this, I will build new neural pathways and the nerves will wither. This is not medical speak, this is what I tell myself.

And there is not just the pain to think about. I also have a problem with my short term memory, and with focussing. All three of us have the same problem - we all have piles of half read books at home. We all have problems thinking of the right words we want to use. We all find concentrating difficult. We forget things.

Hydro was a revelation. I love it. And the water takes 77% of the load, so I can even run in the pool. I cannot describe how bizarre I must look, but hey, I can run. The 3 of us had such fun one session that we somehow never got scheduled in at the same time after that. Oops. Lunges, twists, balance, resistance work. I need a hydro pool here at home. (Dreams are good!)

Crossing our "midline" is hard too. I have never had a problem walking like a soldier - you know the nordic walking thing - opposite arms and legs. Now????? Hahahahahhaaaaa. I have to do it on land and in the water, and it is so difficult, I have to stop every few paces and start again. I will get it right. I used to be able to do it.

I sit on a gym ball, and I have always loved working with these enormous balls. I am/was good at it. Now I sit there and I can centre myself and lift one foot off the ground. The other one??? Nailed to the ground. I have to re-adjust my bottom a zillion times and I may just get it off the floor. But my spine is twisted. I practice every day, because I want to do it right and get my balance - the core- back to how it was. I also have a goal they set for me to raise each leg straight ahead of me while sitting with a straight back. I have 3 months to get this right. I will do it.

The de-sensitising is working. It is amazing. I have 9 different things in my bag. A pot scourer, a dishwashing sponge, a feather, a piece of leather, corduroy, silk, net, hessian and cottonwool. What we do (about 6-8 times a day) is to take some of those things, and rub them softly or firmly on our good limb, and focus on what the feeling is. Then we do the same on the most painful part of our bad limb. And focus on trying to keep the feeling the same as on the good leg. We rate the pain on a scale of 1-10, bearing in mind a base pain level we set before we start. It is unlikely that my base pain level would be below 5. It can vary through the day and sometimes goes up much higher. So the levels we give the objects we use would be the same or higher.

Take a guess which one is the worst for me?

The scourer?


The silk.

It is like a trail of fire. And you know what? This is the most common worst one with patients. The hessian feels like a million sharp needles, and the net is also foul. So is the feather. You see, with CRPS, there is a chain. If you poke your leg with your finger four times, you will feel 4 distinct pokes. With CRPS, they all link up and you feel fire racing from point to point. The nervous system in the affected leg is locked into a "red alert" mode. Fight or flight. It is stuck and can't move. And I can't un-stick it. So it is like when you hurt yourself and get that searing pain??? You snatch your hand away from the flame, or what ever caused the pain. Your nerves signalled your brain to get your hand to act. That is how it should work. Now picture those nerves stuck in the emergency mode. Yep. That is CRPS.

There is medication of course. Loads of it. I hate pills. They are now my best friends. For now. I take Gabapentin, which is used to treat epilepsy, and I do not have epilepsy. It works on the nerves. In conjunction with Amiltriptyline, which is for depression, and I am not depressed. That one helps me sleep too. I take painkillers as well, and I have lidocaine patches to put on my leg, so it is anaethestised enough at night for me to get some sleep. Then there was the IVG. The Intravenous Guenethidine block, - remember the worm thingy? That one. That was supposed to relieve the pain, and after 3 and a half weeks without that, I can only say that it must have worked well, because I am in far more pain now without it. Roll on May when my pain specialist gets back.

There is so much about CRPS that I could tell you. I have learned so much from the experts. You know how I had to get used to it being "my" leg again, how it felt like it was inhabited by aliens. I cracked that one, thank heavens. Also very normal in all patients. And then there is mirror therapy too. Wobble cushions, different methods of walking. So many things.

So there you are. My experience of CRPS. It hurts. It hurts to do anything at all. But isn't it strange - of all the people in the hospital on pain relief courses, the CRPS patients never ever talked about pain. It was just accepted as being there. We laughed, we chatted, we had fun. And no-one would have guessed what lay beneath the surface. We would just casually ask what our base pain levels were now and then.

I am just trying to ignore the pain and keep moving. That doesn't mean it is not there. It will take a while. I still believe I can get better, but I acknowledge that it is a possibility that I may not get better. Whatever happens, I will have tried everything.

Just do not ask me to prove I hurt. I look normal. I try to act normally. But you have no idea from the outside what is going on on the inside. I have a gym ball in my lounge. I also have a trampoline thingy. Those little ones. De-sensitising packs. I lie in bed and do exercises. I walk down the stairs and do exercises. I make coffee while rising up and down on my toes. More exercise. I do exercises while I sit here. I watch TV and exercise.

I have been told I have to pace myself, and to put myself first now and then (the hair remember) and I have to breathe even when it hurts most and I want to hold my breath. Pacing, breathing..... So much to learn. I have charts to fill in with every hour to be coloured according to my activity. I have hydro goals, physio goals, OT goals, psychology goals.


But I am still me. And CRPS is real. Not imaginary. And now we will cease talking about it for a while.

(Everything I have said here is my own personal experience and opinion. I have detailed leaflets to edit for the CRPS Patients Forum, but they will take a little time to do. )

Saturday, April 04, 2009

Ok then......

If you insist. And let me just tell you that I must have taken 2896 photos before I realised that if I didn't look at the camera at all, it worked better.
Now I am off back to the garden. The sun is shining and I need to clean a chair so I can sit down on it.

Friday, April 03, 2009

David is 20!!

I no longer have any teenagers in this house. My baby (the 6ft 4in one) is 20 today. TWENTY!!!!! How did this happen?? Happy Birthday, my boy! Boy?? Man. Oh heavens. He is 20. The wrinkles on my face now have new meaning. I am old. My children are in their 20s and 30s and a new age begins.

So I went and had my hair cut. And highlighted. And then I took a myriad of photos of myself and discovered that the wrinkles are very real and seem to be multiplying at a million times a second, and that I seem to have one eye smaller than the other, or the weight of the eyelid on my right eye is more than that of my left eye, and that meant taking more photos of the wonky eyes.....

And that deperssed me so you get NO photos right now. I am in a decline. Wrinkles, old children, wonky eyes, and the fact that the junior who helped to unfoil the foils at the hairdresser is someone I taught. And she is fresh faced and wrinkle free. I am not.

I went swimming at dawn and did all my hydro exercises and then crawled out of the pool and felt very virtuous. My legs always feel like tons of bricks after hydro. Oh well - it must mean it is working!

I am joking about the decline really. I have no problem with the passing years. Generally. It is just a little alarming when you see it up close! However..... I would love to try to stop time just a little before all my children are grown and settled somewhere far away, and relish those moments of parenthood all over again. For a while. Mums of young ones, don't wish the time away. It sort of sneaks up on you and suddenly they are all grown and fully capable of managing their own affairs.

I have said this before, but it seems just yesterday that they were born......

Thursday, April 02, 2009

One more thing crossed off the list....


There I was minding my own business, wedged behind my shed chopping back the holly tree, when a voice came out of the tree. It was my friend's husband, one of the "new home" neighbours. You know. The ones with the building sites. The building sites I now appear to be obsessed with. He said....."If you would like to sit in the JCB (the bulldozer-digger-thingy) tomorrow, come round at 12.30pm and I will take a photo of you in it. The driver suggested it."

Now I ask you. What would you have done???Huh???? If I hadn't been wedged behind the shed, I may have tried jumping up and down with excitement.

I said yes thank you, with as much decorum as I could muster at the time. And you can bet I was round there like a bullet ( in my car) at 12.30. I have failed to mention that walking is a little difficult at the moment. My leg is hurting like *************** and I have been walking with the crutch, but I hobbled down the track to the building site. And do you know what that sweet driver-of-the-digger-thingy did?????

He leapt into his cab, and started banging the scoop on a mound of soil. I thought hmmmm....he must be doing something important. Then he roared it over the hill, so the hill was directly under the step! He made me a hill so I didn't have to climb up so high!!!

Sigh. He was so sweet. My own hill. I gave my camera to my friend, and told her to take photos. I have many, but they make me look slightly demented, so you get one. From a distance.

See? The mound above is my hill. Close to the step. And look below....me in the digger.

I can't tell you how much fun I had. The seat swivels round so you get to work both ends. This side (above) is the one which stretches out in a delicate fashion, and it has 2 antenna-like levers and a foot pedal. This is the complicated side, but I did manage to work it a little too.
I absolutely aced the other side. The big side. The one you can see in the top photo. I can make it go up and down, and open and shut. I do believe they were all quite impressed at the way I took to it all. I had such fun.

This is my new best friend. His name is Bob. Bob the Builder. A true gentleman. Apparently he is very protective of his digger, and no-one is allowed to sit in it. I did.
And at this point, I should tell you that I took a video of me making it all move. One small problem.......I turned that wretched camera on the side again, and now I have to lie down to watch it. I have tried to rotate it but for some reason, Windows Movie Maker is not co-operating. It is a masterpiece. I am a star. I may just pop it on here, and let you all put your heads delicately on your desks so you can watch. You may need cushions. But you will see it. David says he will sort it when he gets home next week if I haven't done it by then. I may not be able to wait.
Anyway. It made me grin. Scratch that - I was laughing with delight. And that is one more thing I can cross of the list. I have volunteered to fill in if ever he goes off sick. And I have also added a trip to Diggerland to the list. They really let you dig with JCBs there. I need to go. Soon.
I do realise that this is totally weird to some of you. But we all have secret dreams, so bear with me a little. Mine just tend to be a little weirder than most!
PS..... Don't worry about the leg hurting. I have been told that the pain does not mean it is being damaged, and to move through it. I am trying. I am doing all my physio exercises every day and I have been swimming to do all the hydro exercises ( I will tell you about the hysterical over 50's sessions at the pool tomorrow) and trying to go for at least one walk a day. The pain is always there, so we ignore it. I will also tell you more about what I learned over the next few weeks. I can't do it all at once.
Ok - that's it for now. I am now going to lean over and watch my triumph once again!

Spring.....for Vee

I mentioned the daffodils growing on the roadside verges yesterday so I thought you may actually like to see them......

As my mother always says, in South Africa, they would be picked and sold in bunches to people in their cars at traffic lights. They would never last on the roadside!

Just over the hedge the lambs are playing with their mothers.....

There you are - a little bit of England in the spring.
I will be back a little later to talk about what I did today. Here is a clue.... it has something to do with this..........

I seem to have a slight technical hitch with a video. It is on its side again, and my son is trying to fix all. You can relax people. I am still alive!

Wednesday, April 01, 2009

The sweet sounds of spring....

An alternate version of :

Outside my window........

Instead of the sweet chirping of birds,and the rustle of leaves, I have this......

The roaring of bulldozers and trucks to take away the soil. I am hearing no sweet sounds of spring. My house is shaking a little.

And driver of the bulldozer has 2 small dogs in his cabin, as he moves those arms and dish thingy like a mystical ballet .

See???? Have a look closer....

And spring has moved inside instead. These are the roses my friends had waiting for me in the house when I got home. Beautiful.

And these are Henry and Henrietta, my Easter wildlife I found in Bath. They became our ward pets. They wobble on springs. They kept us all amused!

And now I am off to watch the earthworks. I would love to try driving the bulldozer. I told them. I think they are assuming that I am joking........... Give me half a chance and I will be in that cabin and playing.