Hysterical History

I've been asked why I mentioned the demon in the Chain Theory, the best answer is to explain about the first Demon to enter our house.  OK, this may be OLD history, but it's not as old as some things, like Henry VIII or the Romans, but close.

Let's start by taking you back about 18 years to early 1995. I had been divorced for a couple of years and thinking that my pension would be a Single Person Pension (alright I was only 32), when I met Sally, it was through her daughter that we met. Christina had said to her mum,

"I'm not always going to be around, you need to find someone to look after you. 

There's three people I know might fit the bill, the first's a Male Chauvinistic Pig, so no, not him. 

The second is a bit young so, no. 

Mr Turtle, he's the one, you should go out with him!" 

Good logical thinking from a 12½ year old! The only problem, we'd been seeing each other for a week before the night my daughter chose her dad. Oh, and yes, I take every opportunity to remind her that she chose me as her dad!

Oh My God! I realise I’ve been putting up with the wife for a long time, but I had forgotten what we went through in the early days (He lied! I hadn’t forgotten, just repressed it as we all do with horrible memories.)

My darling wife, was diagnosed with bowel cancer thirty years ago, long before I knew her and, just after we started going out together she was given the chance of life saving surgery to fit, what was then a revolutionary idea, an ileo-anal pouch, in effect an internal ileostomy. This pouch was going to change our lives in such a BIG way… well, let me tell you in the words I used in the newsletter of the Red Lion Group (the support group set up by patients of St Mark's Hospital) back in February 1997:

 “Do I have the operation or not?” - a brilliant question to be asked less than two months into a relationship! I will agree that for married couples this question might not cause too many easy nights, but I had only just started going out with Sally!

So there I was, mid-33, not quite realising how much I felt for this thirty-five-year-old divorcee, and, thanks to a cousin in Lewisham, “commuting” to Northwick Park every day! (Who could have expected that within one short week, I would have been on the receiving end of every one of her bodily fluids?

The next moment having hardly got to know the girl, she starts off by vomiting all over the floor of the ward...with me in the firing line! By day four blood, urine and faeces had been added to the list along with copious tears on the shoulder!

Still, as the nursing staff agreed when they found out how long we had been together, I must be a godsend. (I don’t know if I agree with that?)

Once we had got over the one-part operation which went slightly astray (the nurses realising that things weren’t quite right when a shout of “Get lost, you don’t care about me!” was sent in my direction), we made the not-so-short journey back home to Hastings along with an unexpected ileostomy bag. Isn’t it strange, you don’t realise how hilly your home town is until you start pushing someone in a wheelchair? Thank heavens for my experiences at Lourdes in the 80s, but then, in Lourdes, things are adapted for wheelchairs. Hastings is not wheelchair friendly, like most UK towns and cities. {Please remember this was late 1990's}

It does make a change when, in planning things from the complex day out to the simple shopping trip, you start trying to visualise in your mind the shortest , quickest routes to “ friendly ” shops or public conveniences that you can get into easily!

So, a piece of advice to the partners of both pre- and post-pouch patients. Get a map of your home town, mark the shops or cafés with accessible toilets and get in touch with the Red Cross for assistance with a wheelchair until your partner is able to walk easily.

Finally find the best taxi firm (and this includes price, assistance and willingness to break the speed limit) if you don’t have your own car, and remember: others have gone through this. I coped - so can you. By the way, Sally and I are getting married on May 14 next year! {And somehow, we're still together!}

And from Summer 1999:-

As experienced pouch-pairs will know only too well, the first few months of coping with the new addition can be sheer hell. This food goes straight through, that food slows it all up too much. And as for beer... Ha!!!! For someone as stubborn as my wife Sally (her description, not mine), it is a big change having to restrict the diet. For someone as adventurous in the kitchen as I am (and he is a good cook - Sally) it’s the biggest challenge possible.

The change from being brought up knowing when you need to go to the loo to suddenly needing “nappies” just in case can be downright degrading. Soiling the bed or your clothes, without having felt the need to go, can bring the Demon Depression flying out of its hiding place!

That’s the Demon, creeping up behind you and jumping out just when you didn’t expect it and it does not just aim itself at the pouch owner but targets the spouse-of-pouch as well. Still, as Sally keeps reminding me in the long gaps between the Demon’s appearances - .It lives with you, not you with it!

Still, having got the Demon firmly put into its rightful place (buried about two miles deep on the surface of Pluto preferably), you then have to look into feeding the pouch. I am sure that many of you will have discovered that "pouch" actually stands for Permanently Open Unfillable Constant Hunger, because of the little but often method of feeding needed to satisfy this creature seldom encountered out of the tight-knit social group in which it lives.

First, take a very minimalistic shopping budget (as I am now on incapacity benefit, thanks to arthritis aggravated by pushing her around the hills of Hastings in a wheelchair for six weeks!) and a greatly reduced shopping list (take a chair into the supermarket to sit on while you read the contents lists to avoid the no-no items). Then it’s a case of trying out a variety of meals (one at a time!).

While I am talking of food, a bed of boiled white rice topped with some plain fried minced beef or lamb into which a large quantity of ketchup had been mixed was, and still is, our staple emergency meal. If the owner of the “little f(r)iend” liked spicy foods before the op - sorry, but it may take a long time to slowly build up to something they can handle.

“Slow and Steady wins the day” as the Turtle said to the Hare!

Gee, it's amazing how little realisation the Department for Wonderful People and the rest of Her Majesty's Government have for how simple things AREN'T for disabled people.  It's also amazing that I'm the one claiming the benefits and not her!

It's also strange that "The PouchDemon" and "The ChainDemon" are married and living happily ever after (Sorry, that should be existing, you can't live on Assessment Rate).

I'd like to thank the webmaster of The Red Lion Group for archiving all the old newsletters including the ones that had those two articles in.  It gave me a wonderful afternoon of reminiscing and reformatting the text as I didn't have copies of the articles I wrote soooooo long ago.

The Chain Theory

I have what might be a silly question, I know there are people out there, and I am one of them, who have to budget their energy reserves carefully. These people suffer from a wide variety of maladies ranging from Lupus to Chronic Fatigue Syndrome, Arthritis to Fibromyalgia.  These people group together under the title of "Spoonies", thanks to Christine Miserandino and her spoon theory.  My question is, what do we call those of us who have an additive problem that is like being pulled back and gets worse as we go through the day?

I was sitting trying to think of a similar description for the way I have to force myself to wade through invisible mud and suffer from the delayed pain that this causes.  This may not be typical of other Osteo-Arthritis sufferers, but it’s my description of my “Demon”.

The spoon theory states that you have blocks of energy, represented by a handful of spoons that get taken away as you do tasks throughout the day.  My “Demon” doesn’t take, until later, but adds, however, he makes sure I throw my spoons about too!

What you need to do is imagine that as I start to walk, or stand, this little blighter nips up behind me and threads a chain through my leg.  Not between them, but sort of sticks a link of the chain right into and through my knee.  Needless to say, the analgesics I am on hide the actual pain of the link being threaded through the knee, but sometimes, the heat used to weld the link shut can be felt.

Like Jacob Marley, in “A Christmas Carol”, who appears to Ebenezer Scrooge weighed down by chains he forged in life, my chains weigh me down throughout the day and drag along behind me as I walk.  It starts off with just small light chains, but these are added to and added to as I move, if I can stop and take a rest with my weight off my legs, some may fall off, but there’s always some that don’t.

The day goes on, with these chains dragging me down, throwing my spoons out as I go along, until at last, I run out of spoons and fall into bed.  This is the time the Demon really has his fun.  He gets to stand at the end of my bed and pull the chains with all his might, pulling on those links that pass through my shoulders and knees.  He doesn’t have the decency to undo the link that goes through the joint, just pulls as hard as possible to yank the chains out, dragging the last link straight through and out!

I had tried to find other descriptions, like a back-pack being filled with stones, but being a “Stonie” didn’t sound too good, that and the pain at the end of the day isn’t there.  The chains seem to be the best description, so, as well as being a “Spoonie”, I’m a “Chainee”.