A SERIOUS LEMON

Since starting this blog, I have discovered there are a whole load of people out there suffering with chronic pain - many, many more than I had ever imagined and from all walks of life.  My technophobia is such that I am slowly finding my way around the bloggersphere (painfully so is probably a better description - no pun intended);  I find blogs that are really interesting, but can't find anywhere to follow, or I think "Oh, that would be a good link", but I haven't worked out how to go about linking it to my blog (either in netiquette or physically), still, give me time...

The one thing that strikes me most though, is how everyone seems so much worse than me.  Last week, this bloody thing called CRP was dominating my life.  "Oh, woe is me", was the internal and silent thought.  "This is the absolute pits - my life is virtually over".  Dramatic?  You betcha.  I had visions of my whole house being transformed into some sort of "mobility showroom" - rails, hoists, built up toilet seats, ramps, paved-over garden - you name it - I planned it.  And then I read about others who had many, many more things to deal with.  Stuff that made my problems look like a dance with Snow White.  It was like having a bucket of cold water (read reality) tipped over my head to bring everything back into perspective.  For it is so easy to get wrapped up and swept along on a tide of misery and self-pity and, if I am being brutally honest with myself here, that is exactly what was happening to me.  So what, you struggle to get in and out of the car?  At least you're not housebound- you can get out and breath in fresh air.  So what, you double up in pain when you bend down to pick up your daughter's toys that are left lying on the floor, for what seems the hundredth time that day?  At least you have a beautiful daughter who brings you more pleasure when she sings you her latest song, than the ability to get something off the bottom shelf at the supermarket without yelping can ever do.


I know I should be thankful.  And I am thankful.  But I know I should be more thankful.  Sometimes it is very hard to see the wood for the trees.  The negative thoughts always seem to be stronger than the positive ones and although I know in my heart that is because I allow them to be, by a perverse twist of human nature, I allow them to be stronger simply because it is easier to do so.  I look around and every day I see that to make people cry seems to be a whole lot easier than making them laugh.  I try to make myself look at things from a different point of view.  People say to me: "why do you make a joke of everything?  Why don't you treat things seriously?"  Well, I do treat things seriously - my humour is my defence mechanism, it is helps me to deal with things both good and bad - and you know what?  I think there is more than enough misery in this world without me adding to it.  I just need to get a little more perspective....


TODAY'S LEMON RATING:   A medium sized 5 out of 10 (aided by the sun coming out)

A LITTLE LIGHT LEMON READING

How to Beat Pain by Christine Craggs-Hinton.  (Paperback  RRP £7.99)  Now this is quite a neat little book from a series of “Overcoming Common Problems” by Sheldon Press.  The author suffers from fibromyalgia herself and has taken up writing for therapeutic reasons.  She has written 5 other books, dealing with fibromyalgia, chronic fatigue, polycystic ovary syndrome and gout; she also writes for the Fibromyalgia Association UK and FaMily magazine.

First of all, it is quite a short book (some 103 pages long) and is UK based.  The author writes from her own point of view and experiences and the vocabulary is clear and concise without drowning the reader in medical/facts/terminology (although they are obviously used). 

There is a very informative section on “trigger therapy” (massaging trigger points that cause pain) about which the author is very passionate, and it is this, plus the section on the Alexander Technique, which makes up the bulk of the book.  Tips include dealing with everyday situations, like sitting at a desk, picking something up from the floor and even getting a casserole out of the oven!  All extremely useful, but more for someone who has recently been diagnosed with chronic pain – I feel that any long term sufferers would already know most of this stuff.

The smaller sections on exercise have easy to understand instructions and accompanying line drawings (although most of those shown are ones readily suggested by NHS physiotherapy departments).  The advice on nutrition is often common sense (cut out snacks, eat wholemeal foods etc) and would probably benefit anyone (allergies aside of course) whether they suffered from Chronic Pain or not. I haven’t followed the sample diet, so I can’t comment on whether or not it is successful.

Finally, the author touches on Complementary Therapy.  These are only “thumbnail” pointers really (a couple of paragraphs each) and again, are more of an introduction to what is out there should you wish to investigate further.  There is also is a list of useful addresses; mostly in the UK, but 6 are based in the USA, and include organisations such as The British Pain Society and the American Pain Society.

On the whole I found this book an excellent introduction to the issue of chronic pain – not too overwhelming, well written, user friendly and full of useful tips.  However, I feel it is just that – an introduction - if you are looking for something more advanced/in depth then it may not be quite for you.  Will it fulfil the promise of the title? Well, each case is unique and the author herself admits that there is no quick fix, but you are left with the feeling it should certainly go towards helping you get some relief.

CLOUDY WITH A CHANCE OF LEMONS

Well, yesterday was “payback” for the Back Class and the pain I have at the moment seems to be far outweighing the benefits of attendance.  I have to admit there are times when I think:”is this all worth it?” Maybe I should just give up, sit back and let things happen.  Bring out the comfy, baggy clothes and the couch and adapt to the situation.  Now here lies the crux of the matter, because at the moment, I feel that adapting to the situation means I am giving in to the situation. I want to do the same things in the same way as I have always done them.  I want to bend forward to put my socks on in the morning;  I want to stand by the cooker and make the dinner without using a stool;  I want to walk around town without having to sit down every 10 minutes (I now know where all the chairs are:  bookshop, department store shoe section; coffee shop); I don’t want to have to take painkillers just to function.  I want my life back.

I suppose this might be seen as self-pity, and I do admit to having that in bucketloads – but it is also anger and frustration and, if I am honest, pure bloody-mindedness.  I still bend forward to put my socks on – and it hurts like billyo. I try and defy it – mind over matter, like the Kwai Chang Caine character in that old TV series “Kung Fu”.  If he could walk over hot coals, then I sure as hell can put my “Hello Kitty” ankle socks on.  Unfortunately, “Grasshopper” did not suffer from CRPS and walked barefoot – so we shall never know if he would find himself in the same position – perched helplessly on the end of his reed grass futon with tears in his eyes and a sock hanging mockingly from his foot.

Now, this morning I am waiting for the delivery men to bring my new washing machine.  The old one leaked, having done many years of good service, and again, not being able to just bend down and mop up with old towels only really adds to your stress levels and general annoyance.  So, while I am waiting, I thought: “I know what!  I’ll do a book review!  You don’t have to use your back to do a book review!  I shall review How to Beat Pain by Christine Craggs-Hinton.”  Bearing in mind that I have never done one of these things before, this might be a bit hit and miss. Still, we’ll give it a go and post tomorrow.   ‘Till then, as Master Kan said to the young Caine:  “When you can take the pebble from my hand, it will be time for you to leave” 




Today's Lemon Rating:  A good old 7 out of 10 (thanks to a pair of socks & a worn out washing machine)

AND LET'S WORK THOSE LEMONS GIRL! READY?

Today was back exercise class.   The session involves a series of warm-ups, followed by 12 individual exercises (which last for about 1½ minutes each), cool downs, relaxation and group discussion. The participants  are at all varying degrees of disability/pain, so, you have me and a couple of other wrecks (who are at the bottom of the scale and can barely lift our legs, let alone get down onto the floor mat); and then you have the top echelon, those who can do aerobics and who just stop short of doing one-armed press-ups.  Now, it doesn’t take much to bruise my self-esteem, so to see someone who resembles a personal trainer, marching on the spot (and in perfect time to the music as well, would you mind) at the rate of knots when I am struggling on the half-jacks is enough to send me hobbling for the nearest exit and the safety of my couch.

Relaxation wasn’t much better.  We all had to lie on mats on the floor with 2 pillows and listen to a tape, whilst a therapist  took us through a fantasy world of peace and tranquillity, birdsong, wild flowers, blue skies and rippling streams.  Unfortunately, all I could think about was a) I am cold and uncomfortable; b) I got down here, but I’m not sure I’m going to get back up, and c) dear God, please don’t let that curry I had last night repeat itself, because the last thing I want to do in this world of peace and tranquillity, is let rip and break wind.  Of course, this does not lend itself to a relaxing session at all and I was very glad when we left the fantasy world and gently brought ourselves back into the room.  Thankfully, the curry behaved itself and I managed to get myself back upright in a dignified manner.

Group discussion came next.  The young man doing the talk was obviously very keen on this programme and did his best with a whiteboard and a marker pen that had seen better days and got fainter by the minute (bit like me in that respect) to describe the difference between acute and chronic pain. It is difficult to keep to the subject when most people just want to talk about their own personal situation, but he did very well in the circumstances, although I am left with a nagging feeling that this is all controlled by the mind (this is not what was suggested by the way, merely what I was thinking).

The afternoon was spent at the hairdressers.  “Do something!” I pleaded....”I feel like a down-trodden, mumsy, saddo”.  The hairdresser worked his magic.  It was painful sitting in the chair for an hour, but it was worth it.  I can feel crap, but I don’t need to look it...

Today’s lemon rating:      5.5 out of 10  (would have been 6 if not for the hairdresser)

WHEN LIFE GIVES YOU LEMONS - MAKE A MERINGUE: Step One: First, take your Lemons...

Step One: First, take your Lemons...

Nine months ago I hurt my back.  The funny thing is, I don't remember doing it; it might have been when I washed the windows, or painted the conservatory, or lugged some gravel into the garden, or spring cleaned the house.  The fact is, I woke up one day and my back hurt.  And then it hurt worse.  So the GP gave me pills and the physiotherapist gave me, well... physiotherapy, and the MRI people gave me an MRI and it came back clear, and the Osteopath pulled me about a bit, and the GP gave me some different pills.  And still my back hurt.  I could not bend or twist; I could not walk for more than 10 minutes; I could not lift anything;  I could not open heavy or stiff doors;  I could not run;  I could not dance.  But enough of what I could not do....what could I do?  Well, I could still laugh, I could still lift up the rocks of life and look underneath instead of taking them at face value; and I could still hug my daughters and my husband (though swinging from the chandeliers was obviously a no-go now) and I could still cry.

Then, two weeks ago, the Physiotherapist and the GP told me that I would probably not get better and that the pain was not going to go away.  They told me I have something called Chronic Pain Syndrome (CPS), which means that you still get pain long after the original injury has healed.  Basically, my central nervous system has decided that, after many years of living in perfect harmony with the rest of my body, it wants to go it's own way and do it's own thing and it doesn't need my permission or co-operation to do so.  I have to admit that getting my head around the fact that I will have to live with this level of pain for the rest of my life has been very difficult for me and has made me swear, cry and be generally negative.  Now, I can let this thing take over my life and simply become the woman with CPS or, I can continue to be an individual that still has a lot to give in life; and who is more than just an illness or disability.

Just over two weeks ago, I had never heard of CPS.  I knew nothing about it - I had no need to know about it.  Well, I know a bit more about it now - and I expect I'll be a bloomin' expert in it by the end of the year.

To help me work through all these things and log my journey down this untrod track, I decided to write a blog.  It may be read by someone else who is in a similar position to me and it may help them along their path.   Of course, it may not be read by anyone other than myself - but that's ok, it will act as a diary and a "get it all off your chest" mechanism, which can only help me in the long run.

My hope is that to begin with, because things are new and quite raw, the blog will be more about CPS and less about me.  However, as time progresses, and if all goes to plan, things should reverse and be more the other way around (i.e. less about CPS and more about me). Whatever form it takes, I sincerely hope that it contains a certain level of humour - because without that, well..... it doesn't bear thinking about.

Someday in the far future, this thing may overcome me.  But not just yet my friend ..... not just yet.