Update July 2014

Having neglected this for so long, I find I have  a rash of new readers. For their benefit more than anything else I thought I'd do a quick synopsis of the last few months.

The year started like any other, cold weather means weeks of being indoors, my body seized up by the rain and cold. Devon was very wet this year as was the whole country I suppose but our village was cut off by floods several times, no way as bad as those poor people on the Somerset Levels however. At least we escaped the biting easterly winds of other winters.

I worked as much as I could over the worst of it and then I saw a Lyme 'Specialist' at Winchester Hospital having been referred to the new National Lyme Clinic as it then was. Little did I know that the clinic would close again at the end of March due to problems over its' funding.  The conssultant was pleasant but didn't seem to know much about Lyme disease. I was given 3 months low dose antibiotics and told to read Stephen Buhner's book on healing lyme with herbs. All my NHS blood tests came back negative so 'no active infection' then.

The herx I had whilst on the antibiotics was severe, obviously even at a low dose some bugs were being killed.  this then abated and after several weeks I reached a plateau on which I remained.  The consultant did not want to see me again, I was apparently cured.  My mobility is still awful, I have worse neck problems than I have ever had and the creaking and clicking drives me to distraction.  We did the first show of the year in Cornwall in fairly decent weather although it was very wet one day, it wasn't too cold so I coped OK with it.

I then started working towards all my summer gigs, internet sales wnet through the roof for me so I was sewing as much as I could. At a show in Oxfordshire I had the luxury of a late start, a shower and breakfast whilst Worst Half opened up the 'shop'. In the shower I took a tiny tick nymph off my right foot. I didn't think too much about it, it was very small. One week later we had a camping weekend with the family in Central England, a weekend of family meals, sitting in the sun and visiting a kids play park. It was glorious.

Next morning my mood changed, I scratched the back of my knee only to find I had removed a large tick. I was frantic (sorry!) I couldn't see the wound so got Worst Half home from work to inspect it and the rest of me for any more I had missed. All I had was a hole in the back off the knee, no more nasties.  I phoned our surgery, saw a GP later in the day and she prounced the hole quite big and that she though the tick had been very well embedded. I was referred to the 'wound nurse' for 3 weeks for ongoing treatment. Luckily this has now all healed Ok although I was told there was a slight rash round the hole but not enough to be called and EM rash. Several days later I fely very fluey so was back on the doxy again. This time I obtained some more and took a longer course and supplemented with biofilm busters and lots of antioxidents and probiotics. I felt dreadful the whole time.

After 4 weeks I couldn't cope with keeping out of the sun any longer, I work at mostly outside events this time of year and it's been a nightmare avoiding sunlight, so now I've stopped the doxy and am just on a herbal regime. I have the bulk of my summer shows in the next 4 weeks and needed to be reasonably with it. One day last week I was so dozey I drove over a wooden post in a car park much to Worst Half's annoyance, he'd only just fixed it since my last mishap with a lampost after cranial therapy!

So that's where we are now, a bit less brain foggy, a little less sunburnt and rushing headlong into a 2 months of full on outside events. My garden is neglected although I've been collecting Salvias to grow in pots which dont need digging, weeding, tidying and pruning. Just the odd water, a repot ain the spring and thye look fab on my south-facing patio. Best of all they survive from one year to the next here. That said, it applies to me too, I'm no better, not a lot worse and survive. I should be thankful for for small mercies I supoose.

A poem for Lyme

prompted by a website looking for Lyme themed poems I wrote this in five minutes flat this morning. Wish my brain worked better at other times and at more useful things!

Get up and work through it
you're not really ill.
If you say you can't work
well just take this pill.
It might make you happy
but it wont cure your woes.
Ok have this painkiller
for the pain in your toes.
Now you've got brain fog?
but not quite all day?
Your face droops? your neck hurts?
OK, have it your way!
Your tests are all negative.
Of course they are right.
What on earth do you mean
no-one understands your plight?
So twenty years later
at the end of your tether
You go surf the net
and find all together
a whole group of people who suffer like you
so you talk and you talk and they tell you what to do.
Ignore all the medics who keep ignoring you.
Then you have to self treat and you're on your last dime,
to pay for a genius who tells you it's LYME.
So you sigh with relief and cry tears, not of joy
but of years of frustration at our government's ploy
One day truth will out
and revenge will be sweet
but all I do now is constantly treat.
I've lost my career and my friends have all flown
but my knowledge of Lyme has most certainly grown.

You never know

Each winter I eagerly await the arrival of the siskins. They're acrobatic little birds, with loads of energy and watching them on the niger feeders makes a wonderful diversion. In an average winter they arrive here in the early days of January just when the weather has turned a bit colder. In cold winters they tend to arrive before Christmas which is what they have done again this winter. Already we have quite a flock,  so it may turn out to be cold in the next few weeks, but of course with our weather you never quite know.

And so it is with Lyme Disease, you never know what is around the corner. As the year turns I am drawn back to remembering how it was when I was first unwell, finally collapsing on Boxing Day 1992 after six to eight months of increasingly ill health. I had never heard of Lyme Disease then and was treated for months for ME, chronic fatigue, various viruses and finally depression. As the months turned to years I never recovered my previous good health and boundless energy. I worked, ran a youth club, was in a new relationship, taught lacemaking, played skittles once a week and had been a keen supporter of the nightlife in our village pub.  I was pushed from one NHS consultant to another over the next seven years, finally Rheumatology homed in and decided I had a non specific arthritis, could do with losing some weight and put me on a raft of pills and steroids which ensured the weight kept piling on. 

In desperation I turned to the internet, found that the pills  I so hated and had been trying to stop were indeed causing a lot of the problems. I stopped them dead. My GP went mental and warned me about side effects, withrawals and increased pain. I started to feel marginally better but when I was functioning at perhaps 30% of normal the improvement was only marginal. As each little improvement came and went so did another symptom. My body was acting up in a seemingly random fashion, the only constant was that nothing quite worked properly. I was cold, I was hot, I could walk, I couldn't walk, I could concentrate, I was in a brain fog, I was tired, I couldn't sleep, my feet hurt, my neck hurt, I had a spider permanently crawling up my back, I had shooting pains in my hands, my shoulders froze, my wrists swelled up, the swellings disappeared, I had strange rashes, the rashes disappeared overnight, they itched, they didn't itch and so it continued relentlessly.

My GP was fed up, I became the heart sink patient, I kept away from doctors as much as I could, only presenting when I had an acute infection of some sort or other, infections which dogged me most winters. All this time I was main carer to my elderly and increasingly demented mother and was spending 4 days a week 150 miles away. The days at home I spent sleeping, trying to recover enough energy for the next onslaught.  A new GP told me I was exhausted and offered to write to my mother's GP and social workers and tell them I could not carry on, the problem was my mother who disbelieved I was ill, not the officials.

In the autumn of 2006 my mother was in respite care, for her sake not mine and was in a home briefly. I had time to breathe. Browsing the internet one day looking for the cause of yet another rash, I came across a picture of the EM rash. It was eerily familiar. In 1992 before I became ill I had had this rash and had been to my GP with it. I had been told it was some sort of insect bite and to put some cream on it, nothing serious. I started reading about this rash, it was caused by a tick bite. I had had cats since 1989 and one in particular had brought in a lot of ticks in the summer of 1992, not knowing how to remove them I had asked a neighbour who showed me. 

Looking at the pictures of the rash was a lightbulb moment. I was pointed to the help group Eurolyme who in turn pointed me to a private doctor, I was assured the NHS would not be interested; indeed they were not, some time afterwards my Rheumatologist wrote that had she suspected Lyme I would have been tested and that she would be pleased to treat me again when the private Lyme treatment failed. Seven days after my mother died in 2007 I had a clinical diagnosis of Lyme disease which by then I had had for almost 15 years. After 16 months of a fairly conservative treatment I was substantially recovered, sold my wheelchair and had started my own business.

With Lyme as I said you never know what is round the corner, 7 years on and I am relapsing again. I was never tested for many of the co-infections which the bite brings. I suspect I need to address these. I have recently started the process of referral to the new NHS Lyme Clinic in Winchester although the forms I filled in and the blood tests I have had seem strangely incomplete.  

So how do I cope day to day?  I still run my business which takes me away from home between April and October some 4 days a week on average. I live mostly in my caravan during this time, so it's good to have my own things around me as consistency seems to be key. My same pillows, bedding and stuff is essential for that all important sleep. In practice I have two identical 'kits' one for home one for away. If I stay anywhere else it all goes with me. 

I pace myself as much as I can, I sleep 2 hours most afternoons when I can. I take my meds at set times and always with food to stop unwanted side effects.  When I'm at home creating my wares I start about 8am, work until 1, have lunch, crash out for 2 hours, get up, have tea and a snack and start again at 4ish until 8pm and dinner. When I'm away, on a non show day I sleep in the afternoons and pace myself, on a show day I usually have to be up by 6, work until at least 6 then eat and go straight to bed, the adrenaline seems to carry me through. After a show I usually sleep a whole day.  As I have severe mobility problems I walk as little as possible to conserve energy when I'm at work, I use a scooter sometimes though I don't own one. I get driven in (or drive myself) to events and make full use of my blue badge, I save the walking practice and exercise regime for when I'm home and don't need to save every bit of energy for work.  It seems relentless put like this but it's how I manage as normal a life as possible, where I still get out and about and most of all I can still work. Yes it's very hard at times but I love what I do and trying to make money is sometimes a good incentive!  

There are times during a flare or if I catch the inevitable bug that this all goes pear-shaped. Then I am ruthless about cutting back. I pull out of events if I need to and rest as much as I can .  I keep away from other people too, I don't need their cynicism or negative comments. I get others to help where I can. I can't spend time regretting what I miss, the negative vibes destroy so much. I've always been a glass half full person and I make myself keep on that way, even when it's tough.  I can't have a pity party, it would never end after 22 years of Lyme so I don't even go there. I know my way is not most people's but it works for me.

It seems now that the patients are in possession of most knowledge about Lyme, painstakingly piecing together strands of research and ploughing through weighty documents in the medical journals. In 1992 no one knew much about Lyme save for a few enlightened souls in the USA and the NHS dismissed it out of hand. 

So what has changed? Firstly I have, I'm much tougher and more ruthless and actually if it wasn't for Lyme I probably would not be so strong.  The PHE had a conference last autumn at which they paid lip-service to changing the ways of the NHS though precious little seems to be happening so far. There are now several clinics around the world who can treat Lyme, but it is a costly business and demands lengthy stays abroad in a lot of cases. The main thing that has changed is the huge number of patients now coming forward and forming self help groups for support and the dissemination of accurate information. Patients lead the way in publicising this illness and making people aware of prevention. It would be nice in 2014 if this situation could be built on by the NHS and leading medics and so put a stop to the denials that the establishment seem so keen to perpetuate. 

As I said at the beginning you never know what's around the corner with Lyme disease, but I keep hoping for better times, all of us sufferers do.

Harm and Hippocrates

A month on and the Samento and Banderol have gone out of the window again. I was herxing so badly I was unable to do any work and this is my other busy period in the year.  The 6 weeks between the end of October and the fist week in December is prime Christmas selling time and I have been inundated with orders. So I'm back on my normal regime of arthritis meds and pain killers. 

I'm also worried about my increasing inability to walk more than about 20 yards and this is giving me real problems at shows when I have to stand for the best part of the day and where you rely on legs to get you about. Coupled with the fact I seem unable to carry anything at all, doing a show on my own is almost impossible unless I can park right next to the venue. The purchase of a mobility scooter is looking a lot more likely. WH does all the fetching and carrying for me but his arthritis is worse than ever this year, so bad in fact he's booked a GP appointment which is almost unheard of.  Between us we are a right pair of old crocks!

I'm planning on doing the samento etc again after Christmas when I have 3 months of work purely at home. My Gp has agreed to refer me to the new National Lyme Clinic in Winchester, that was a couple of weeks ago and I have heard nothing since. A request for extra antihistamines for my ever increasing itchy rash was met with agreement to my face and total refusal when I tried to collect the prescription. I am also awaiting yet another dermatology appointment, but I'm not holding my breath. Meanwhile the antihistamines are an OTC drug so guess who's buying loads in Boots?  

Once again the NHS conspires to confound those of us who really need their help, the chronically sick. The GMC website has a fascinating page on the duties of a doctor. It makes interesting reading. I thought that one of the tenets of the Hippocratic oath was do no harm, all my dealings with NHS medics seems to be at odds with this, harm is done by omission.   It's about time someone started to take some notice.

Just a pile of old bones

I don't often eat pork, WH is allergic so it's rarely worth cooking any for one. Recently though, lured by the reduced section in Waitrose, WH succumbed to a pack of spare ribs, enough for one very large or 2 small portions. In turn I then succumbed to a really old fave of mine from the days when the famed Great American Disaster diner was open in Birmingham and saturday nights were often spent eating US style. That was at least 35 years ago but the memories still linger. 

I've just finished my second plate of Spicy Barbecue Ribs and they were even better than the first lot yesterday. Here's the recipe.

500g pork ribs
100ml golden syrup
100ml tomato ketchup
100ml tomato puree
20ml worcester sauce
1 beef stock cube dissolved in 50 ml boiling water
Half teaspoon smoked paprika
Half teaspoon mustard powder (more if you like it really hot)
Few twists of black pepper
Pinch of salt

Mix all the ingredients except the ribs in a flat dish. 
Add the ribs and cover with the sauce. 
Cover the dish and refrigerate for at least 4 hours.
Bake covered with tin foil in a moderate oven for 3-4 hours. 
If they look like they are drying out too quickly add some water to the sauce periodically.

Eat with a big smile :) jacket potatoes and sweetcorn. Yum

Tidal wave

Well it's been quite an eventful week one way or another but not stuff I really want to write about just now. I have been upping the Samento and Banderol though. After I could tolerate 10 drops each time for a couple of days, I started increasing the dose exponentially so I'm now up to 25 drops of each in the morning and 10 drops at night with no extra effect. I am starting to see little improvement too, certainly a lot of the brain fog is lifting and I have slightly more energy.

Tomorrow in London is the PHE Conference on Lyme disease. What started out looking like a seemingly boring presentation of the same old same old in relation to the new Lyme unit being set up in Hampshire, now begins to look slightly more promising with the input of Lady Mar, the LDA and real live patients. I wish I could have gone but it is just too far and too expensive by public transport and driving on my own out of the question.  Several people from a group I belong to are going so I'm looking forward to their reports afterwards. PHE have promised some transcripts and videos afterwards but I admit I'm sceptical of some of their answers to questions about these provisions put to them in advance.

With various other pieces of research coming to light now and the recent statement regarding Lyme Disease and services in the HPA (Health Protection Agency) we can begin to see a tiny chink of light at the end of a very long tunnel. The tide is starting to turn for Lyme disease but I dont expect it to be even half way in in  my lifetime.

Herxing like Hell

Been back on the good old Samento and Banderol (herbal antibiotics) for a week now. I've got up to 5 drops a day of each and I'm permanently nauseous. The treatment protocol suggested by Dr Marty Ross a leading authority in Lyme treatment suggests starting at 10 drops of each TWICE a day and I can't even tolerate one quarter of this.  Presumably all this is a giant herx which rather points to there being a lot of Borrelia coursing round my system again.

I've started now as I have 5 weeks between craft shows so I don't have to work outside the house, however I would like to do some work indoors, out of the last 7 days I have achieved the equivalent about 2 days, not good. The rest of the time I am laid low with a permanent headache, fever, nausea, a rash, muscle pain and palpitations. Not good.

I'm going to persevere though as I'm sure if I can zap a few more of those pesky spirochaetes my overall health should improve and maybe my legs will start to work normally again. At the moment they are firmly switched off, the brain is willing but it's like the power supply just died. I've got an appointment with the NHS rheumatologist in a couple of weeks, wonder what he will have to say about the old legs.  Usually its  a case of 'oh well try and get some exercise,' he hasn't quite grasped that I am trying and I fail every time! Maybe I should start talking nerve damage and see what he suggests then. Meanwhile I'm just hoping I have the oomph to actually get to the appointment.

Cuddles day

If it's Monday it must be cuddles day, not for me, for one of my grey babies, Misty, the smaller of my twin cats. 

Sunday nights I take a weekly dose of Methotrexate along with whatever food I fancy will keep the dreaded nausea at bay. Even if I have just eaten, I must eat again 'on top' of the pills in order to keep them down and to allow me to take the other seven I take each night. Taking before or even with a meal is usually too early in the evening and I get the side effects before I'm asleep. So years of trying other times/combinations have lead to this current practice. The usual snack of choice is biscuit based, gingery or maybe cheesey. Occasionally actual cheese does it, but anything 'sensible', fruity, veggy, or runny is a no no. It has to be dryish, bland and filling. The food police are having a fit just reading this.

There then follows a shortish night of frequent trips to the bathroom, night sweats, thirst, headaches and general feverishness. By the time I have started to sleep properly, around 5.45am, the alarm goes off and WH has to get ready for work.  I try to go back to sleep and frequently fail. I have to take more pills at 6am anyway and Mondays I have the added bonus of a Folic Acid pill too. I have to eat again then, usually breakfast but for those times I really can't eat anything 'proper' it's more biscuits. I tried and failed to get those pills down unaccompanied too but the ensuing nausea was worse than ever.  An hour after that lot and by the time I've dressed, tidied, emptied the dishwasher and pandered to the cats, I'm knackered and ready for bed again.  

This all conspires to make Mondays a waste of time for me. Not so for the smaller of my twin grey cats. He's normally a pain in the bedroom at night, taps me when he's hungry, has a major wash next to my head when I'm fast asleep and has a thing about doors, an open door must be shut, a shut door is only there to be opened. On Mondays however it's as if he knows. As soon as I go near the bed he's there on the corner, getting ready to snuggle in. When I pull up the duvet he shifts into position against my leg and there he stays, good as gold. I get the occasional glance to see if I'm likely to move but for as long as I'm there, he's there. No tapping, no washing, just extremely good behaviour. Of course I might reach down and give him a quick cuddle but he doesn't expect over much and certainly doesn't pester me for more. In fact, the perfectly behaved cat. His brother Nelson, meanwhile is usually outside if the weather's good, if it's not he'll be in his cardboard box in the living room (but that's a whole other story).

My question is simple. If Misty can behave for a few hours each Monday then why on earth can't he do it the for rest of the flipping week?

Welcome back to the madhouse

Clipart by lineartestpilot: http://clipartof.com/1153537

It's been three years since I posted here and I have decided during the hiatus from work which is autumn I might as well revisit this blog.

My life has changed much since I was last here, one of the biggest things is that Lyme disease is now on the top of a lot of people's agendas. It's still vastly misunderstood by the NHS and it's still an uphill battle to get proper, successful treatment but the sad fact is that more and people are affected by it and the wonders of cyberspace have joined a lot of sufferers together so that they are not so alone as they were in the past. I joined a support group online and see that the relative newbies to this awful disease are as bewildered and angry as I was all those years ago when I was first diagnosed. I thought that by resurrecting this blog some of them would be able to go back and see posts I made when I was undergoing intensive treatment and also from before that time to see how it was for me. 

If I can help just one person then I would be very happy.  On a purely selfish note it also saves me having to keep repeating the story, I can just point interested people here.

On a lighter note I won't just be posting about illness, although you have to realise that life with Lyme is one big balancing act underpinning my entire life and I frequently topple over. You can expect notes on my wider interests from my business to my cats via gardens, cooking and my other passions.

It's good to be back.

My new net home

Just a little heads - up as to where I am now:

www.lojango.com

Please stop by and have a look, you might even see something you like.

4 years

It's 4 years since I started this blog and really I don't have time for it anymore. It's been sort of cathartic writing a lot of the stuff but the creative side of my life has now been taken over by my new occupation, millinery. Not new as in a new skill, I've been doing it off and on for almost 15 years but only now have I taken it on full time. Relieved of running our building company since WH's accident, there really isn't much company left anyhow since his enforced retirement, I have time and energy to do what I want to do.

So hats it is then. I'll have a web site soon (when I get time for THAT) but as for this blog I'm afraid it's curtains. Thanks for reading and have a nice life, mine is definitely good right now.

Time flies

I thought that was only when you are enjoying yourself. Not true!

I'm STILL recovering from the nasty bug which I have now had since the beginning of November. My GP was forthright, OK I agree with the other chap you saw you have had Swine Flu. Well stone the crows, he hadn't told me that so I was gobsmacked to say the least. It did sort of explain why I am still suffering.

Anyway enough of me, it's been really hectic around here. This week we finally got got Mother in Law into a nursing home after several false starts and a run in with her newly appointed social worker who scuppered the whole thing more than once. Devon has a shortage of social workers so they are obviously now appointing chairs instead. WH got more sense from the chair than that guy spoke. It took 3 hours to fill out a form and if we didn't understand it the erstwhile social worker certainly didn't. If it hadn't been for the staff nurse from the PCT we would still be there now, a whole week later.

WH had his fractures reviewed and it was bad news, more time off work and he has little use in his right hand. More physio was called for, so feeling more hopeful he went to his next appointment. The physiotherapist told him to carry on doing the exercises he already was doing, no examination and nothing whilst he was there to check was he was doing, nothing, Nada. He could have had the consult over the phone and saved everyone some time and the NHS some money because God Knows they've wasted enough telling him absolutely nothing.

Meanwhile we've been planning a new strategy for this summer. We have to have some income from something, he hasn't worked since August and I haven't worked outside the home for 18 years now so we're going to do something together, each doing the bits we are able to. So far it's all under wraps but suffice to say we have bought a caravan, a temporary home for our new career and have been beavering away to prepare, OK not as hard as most people would beaver away but a little bit between rests, naps and doctors appointments.

More later.

Crocodile tears

I've had pneumonia for the last 3 weeks. On my second lot of antibiotics, the rot seems to have stopped and I am actually improving now which makes for a nice change. Once again however I am at the mercy of medication which I take 4 times a day and which must be followed by food an hour later. I tried to do it without the food and oh boy did I feel bad. So food it is, every six hours. Unable to taste anything since well before Christmas I've only been eating the barest minimum of a fairly boring diet of ham sandwiches, jelly and fruit, ice cream and the odd oven chip when WH has been catering for himself.

I've not been up to cooking, the last time I did cook was Boxing Day. So on Saturday WH really did fancy something different and something that he didn't have to provide himself so suggested an Indian meal. I remembered that we had had a new takeaway open in a neighbouring village last autumn, their menu had looked anything but the usual run of the mill and what is more they offered free delivery up to a mile radius. WH left the ordering to me, not a brilliant move as I have very little voice right now and they did have somewhat of a problem understanding me, but he was hospital visiting yet again, so I made the best of it and hoped.

Twenty minutes late the door bell rang and a charming chap whom I vaguely recognised apologised for the delay, reduced the bill and gave me a free bottle of wine, a perfectly respectable Pinot Grigio. By now we were both hungry, my meds had been taken almost 2 hours before and the need for food was getting urgent.

Wow, what food. Loads of it, nicely presented and with extras, always a good sign. It made up for the late delivery but as it was icy and snowy I certainly wasn't about to complain. I opened with seek kebab, it was manna from heaven, came with a really different dressing and a tub of green salad. WH had opted for Onion bhaji, a predictably mild choice (as expected really) but pronounced them gorgeous. For his main he had Tandoori chicken, a huge chicken half with a massive side salad and sauce and a stuffed kheema nan which was light, fluffy and full of spicy lamb. I didn't want a whole main course so had opted for another starter, one I had never heard of before, Chicken Crocodile Tears which according to the menu is apparently a Bangladeshi speciality, cubed, marinated and grilled chicken with roasted veggies in a pineapple sauce. To say it blew me away was the understatement of the century. It was divine. Maybe my taste buds had burst back into life at that precise moment, I don't know but whatever, it was the best Indian meal I've ever eaten. The 'free' popadoms with chutney were great too, the wine will have to wait until I'm off the meds.

One thing is for sure, my new year's resolution is to order Crocodile Tears from that place again (and again and again)!

Merry Christmas.

A whole month since I last posted here. No I haven't left you but it has been so hectic here I haven't had chance to write. and now I do it's yet another tale of woe.

My Mother in Law who is 89 has had to move into full time care this week after 9 months of in/out/in again hospital care and a continuing saga of 'events' which have had to be dealt with by family, district nurse, doctors or whoever depending on their nature. Finally the GP has said she is not safe at home mostly due to her refusal to accept appropriate help. The strain on the family has been immense and when she has been home it has been a near full-time job for 3 people. Luckily my input was mostly on the catering front so a little easier to cope with although it has felt odd this week not to be getting up at 7.30 and cooking. Three mornings a week since March I have cooked dinners, 2 on each of 2 days and 3 on a Friday. Full meals with hot puddings and custard which could then be cling filmed, labelled, taken 3 miles and then re-heated by the lunchtime carer.

I got quite organised producing batches of puddings and stews and the like which I then froze, so I could provide a variety of different home made dishes. Now we need to eat our way through all the ones remaining in the freezer, an awkward task as they are such tiny portions and WH will need 3 tubs of stew to feel like he has eaten anything.

Meanwhile we will be having a very odd Christmas, visiting Mother in Law and spending most of the day just the two of us, just youngest stepdaughter popping in for tea and to collect her presents. The main family are coming here on Boxing Day. Just as well it will be quiet really, I have a really bad dose of Bronchitis, picked up on one of the numerous hospital visits. Immuno-compromised by the methotrexate I left it a bit late to go and get antibiotics from the GP so now I am really suffering. At least cooking for 2 will be a doddle but we can always have a hot pudding from the freezer if it all become too much!

Merry Christmas and a Happy New Year.

Snippets

Sitting in the village surgery waiting room (just for a change) there was a long delay and the room was almost full. Three elderly ladies were putting the world to rights and debated the perils of autumn leaves in the garden, the old man down the road and the problems of getting a decent winter vest, over the course of fifteen minutes or so. They were then joined by another lady who told them that the postal-strike talks over the previous two days had now apparently broken down. "What?" said the hithertoo quietest of the other three, "God knows what they find to talk about," she said, "two whole days and they talk about absolutely nothing." Three single words came into my mind, pot, kettle and black.

Mother in Law was re-admitted to hospital after some stitches from her recent surgery started to bleed out. Naturally WH had gone in with her and had been away from here 8 hours or so dealing with it all. Half an hour after his return, the ward sister phoned to tell us of Mother in Law's admission as Mother in Law thought we might not know.

I found a lovely quote in a book I was reading by Santa Montefiore. Being questioned about his background, a chap who wanted to be evasive gave the following answer "My parents are in the iron and steel business, Mother irons and Father steals." I love it, just wish I had an opportunity to use it.

On a black, rainy, dismal day last week, the engineer arrived to set up our new stereo system. He'd come from Bristol and his sat-nav had sent him up some tiny country lanes but eventually he had hit the main drag so to speak, down the valley and into our small village. He was full of it, the narrow lanes and high hedges and the view from the top of the hill, the little village spread out below and he couldn't stop enthusing about it. "All we need is some sun and it would look like paradise," On a good day, I almost agree.

Is it really worth it

WH has his right arm in plaster, the result of his fall from the porch roof several weeks ago. Last Monday the wires were removed from the break in his wrist and he goes back to be assessed a week tomorrow. He hopes he will be having the plaster removed but it is not a given, he has to have the break X-rayed first. His left foot is not in plaster although he has a broken bone. After a week in plaster it was stable, so after scans and X-rays whilst he was under anaesthetic having his wrist wired, the plaster was removed. This to make his life a little easier although had he not had the wrist injury the leg would be still in plaster. He is not supposed to weight bear more than 50% on that foot and crutches are out of the question due to the broken wrist so he hobbles along with a stick.

Being self employed WH applied for Incapacity Benefit, as his is right as a payer of National Insurance contributions. He has no other income right now. You can't pay yourself Statutory Sick Pay so that is what you do when you're Self Employed. The forms were complicated and he had to send medical certificates etc in his case issued by the hospital on the day of his original accident. After about 4 weeks he was notified he would get a minimal payment. This week however he has been summonsed to attend a medical assessment interview by the Department for Work and Pensions (or rather their big buddies Atos Healthcare). If he had any questions he could phone a number. He did. He phoned. He asked why he had to be assessed given his spectacular, plain to see injuries and the fact he had a medical certificate describing this which more than covered him. He still has a black eye 6 weeks after the event.

He was told he has to be checked to make sure he really has broken his wrist etc. This check will be carried out by a "health care professional", NOT a doctor then. A certificate issued by a doctor is not sufficient. If he doesn't attend the assessment his benefit will be stopped.

His anger rapidly turned to disbelief was he when he was told that that the BA has to make sure that he is not capable of any work. He told them he HAS work when he is fit again, after all he runs his own business and strangely has had more enquiries from customers in the last 6 weeks than he has had all year. He questioned what sort of work a person could do who was immobile and can't use their dominant hand. "Oh there may be something."

So the appointment was made. A letter confirming this arrived yesterday along with a leaflet basically designed to scare the crap out of anyone who was thinking of not turning up. Attached to the appointment was a 'route plan' giving detailed instructions of how to get to the centre, which is 27 miles away, via public transport. Now we live in a rural area. Buses are not very frequent so the gist of this was that in order to arrive at a 2.10pm appointment he needed to leave home at 9 minutes past ten, take a bus 15 miles in the wrong direction, wait half an hour then take another bus past where he had come from followed by another 7 buses with finally a walk of 16 minutes duration. The route proudly proclaimed "Number of changes = 7, Journey duration 2hrs 44 minutes". You would then have to wait over an hour for the appointment which was likely to take a "minimum of 75 minutes but allow 2 hours in total". No return route was sent as as it can't be done on the same day. There is no public transport. There was no suggestion as to what he should do in that case. The booklet supplied states that "You will not be asked to attend an examination centre which would require a journey of more than 90 minutes each way by public transport" No problem with doing that then in the case of someone with their leg in plaster.

Well obviously I will be driving him there. It takes about 40 minutes and we can park quite close by in a public car park.

My question is this. If someone is desperate for the benefit, and given the parlous state of the NHS there are undoubtedly genuine claimants out there, how are they supposed to manage all this when they are going in the first place because they are ill? More to the point why is the Department for Work and Pensions wasting money paying fees to Atos Healthcare to assess people who clearly are very incapacitated but who fully intend to return to their regular job or business when they have recovered? A case of jobs for the boys I think and bugger the poor old public yet again.

Atos Healthcare? All they care about is their bank balance.

The colour purple

Christmas is a-coming. I know it's almost 2 months away but everything seems to be in the shops already. For once I've got my act together and got some stuff in hand but the one present that's concerning me today is my own.

I just saw this shoulder bag on a new Accessory boutique, Pretty and Witty, and I love it, me who normally spends £15 in Asda or Tescos top whack. Maybe it's something to do with the colour, maybe it's the style - I just can't do regular 'hand' bags with my arthritis - or maybe it's because it's not *that* far from my usual price range but I have to have it. I'm telling WH it has to go in my stocking this year.

Not that I don't just love all those other much more expensive ones but being sort of out of the market as it were with my rubbish hands I could never buy one as WH would be carrying it everywhere for me and moaning about the privilege. My 'hold' time for anything is 5 minutes max and that's no exaggeration. But a girl can dream. I defy anyone to not love some of them. For now I settled with a beautiful Saddler purse from the same boutique a couple of weeks ago, and you guessed it, mine is purple and soooo soft, it will look great in that handbag on Christmas morning.

WH you have been well and truly warned.

Home Sweet Home

I've finally sold my old house. Eighteen months ago I tried to sell, gave up and rented it, then had to kick the tenants out because they wrecked it and then I re-marketed. Now some 14 weeks after I accepted an offer I finally have the money in the bank and the paperwork all completed. Not a moment too soon. The estate agent was no help at all, and considering the huge fee I had to pay them, I still did all the chasing-up myself.

This week we have a gardener starting on the back at last. this was to be WH's project over a month ago but falling off the roof gave him a good excuse not to! Now, weeks of glorious weather wasted we have finally found a chap who can dig, put in fence-posts and lay a block wall. If it keeps reasonably dry I might have some plantable ground by November.

Who knows by next spring, after owning this house for two whole years, I may even have a garden to call my own!

Birthday presents

One of the various books the girls and their grandmother gave me for my birthday was Dear Friend and Gardener a series of letters between well known gardeners Beth Chatto and Christopher Lloyd. Written over a two year period some 12 plus years ago it's a lovely read and I find myself sitting up until all hours, visions of the varieties and the settings they each describe whizzing through my brain. Odd snippets of everyday life sneak in too, recipes, people met and meals shared along with a very few mentions of current affairs (the death of Princess Diana being a notable inclusion) which help to place it in context and time. I am amazed I had never read this before, it was on my 'list' but not a high priority. With about 60 pages left to go I will miss it when it ends.

My main present was a breadmaker and having now used it twice I am full of plans for future uses. When married in my twenties I used to make all our own bread and did so for about 10 years until newly single again I had no need of so much, nor the time to do it. I've never really taken it up again since mainly because of WH's love of white sliced! With a breadmaker I can indulge myself in a less time consuming way and make the beloved white as well. In fact I tried that first and it came out beautifully, so much so I was reduced to eating the crust myself along with homemade plum jam. This morning I had my first taste of a home-baked seeded loaf which was good but not as dense as I would like. Recently in Denmark I was eating good rye bread with wholegrains and it finally crystallised in my brain that this is the bread I really enjoy, so I can see I will be experimenting more and more until I perfect my own staple bread. Meanwhile, WH is more than happy with a white loaf from a Hovis ready mix.

Staying in

This last fortnight has been one long round of hospital appointments, plasters being removed and replaced, physiotherapy and an operation last Tuesday. WH is still in quite a bad way. The break to the wrist was a 'nasty' one and has had to eb wired into place. The foot is now plaster-less but hurts like hell, we're awaiting the 'Ortho Reg' to call with a new game plan. Plaster, CT scan or strapping. The head injury appeared to have subsided but the anaesthetic on Tuesday had some strange effects and even now he is suffering from vertigo or it's close cousin. The bruised cheekbone is still black. We even had the doctor out to the house on Thursday after a particularly spectacular session. I am learning to be nursemaid and normally have endless patience, having been fairly immobile at times in my past, but even I was weary last night and was thinking it would be lovely to have a cup of tea I had not made myself. Cooking which to me is a welcome distraction has gone out of the window as the patient just isn't eating.

Visitors have been fairly few, although the phone almost answers itself now and I don't mean the answerphone either. Sometimes I wish for more knocks on the door as it would no doubt cheer the patient up no end, we are in grave danger of a deep depression setting in.

One constant has been the presence of two grey fluffy nurses who are attentive at most times although they do have a habit of falling asleep on the job. Misty as Night Nurse snuggles in and stays put for 6 hours plus although if WH gets up to change position or for a shuffle about he's a bit reluctant to move at all. Nelson keeps watch from the back of the sofa, his tail curling down over WH's head. Unusually he has been home a lot, the retired major up the road has lost his furry doormat for the season.

As usual these things always come at the wrong time, not that there is a right time for an accident. I have finally sold the other house, after a 3 month spell of being messed about by the potential purchaser we exchange contracts next week and complete the following one. Hope I have not hexed this by finally putting it in print here. It's not a moment too soon. However and there is always an however in my experience, we had left the removal of some pretty hefty tool shelving in the garage until the last. Now of course it has to be removed and in a hurry. WH was due to do this the day after his accident. Today I hope that Brother in Law and his Best Mate will be coming to dismantle it all and to hopefully remove it to our business lock up for use up there. The grill, bacon and fresh bread are waiting, small price to pay if a few butties help get the job done.

As for the rest of my day it will be very quiet, a planned supper with a few friends cancelled in the light of WH still at risk of throwing up any second. Strange way for me to spend a birthday but hey, there's a first time for everything.