Michelle and Richard

Michelle has been telling me that I don't put 'nice' photos of her on the Blog. That is true, but what the little baggage didn't say is that she refuses to pose for photographs. I have been wanting a nice shot of her, Caelyn and Wendy together. That still hasn't happened, but she did pose for some 'sensible' photos with Richard this evening. They have gone out to dinner while I was editing the photos.
So, come on Michelle! I'll make a scrapbook for you if you provide the material in the form of good photos.

Photobucket Album

Edinburgh? Not us!

There is quite a tale to tell about the Edinburgh trip.

First, there were engineering works on the railways so I ended up getting no less than 6 trains! Got there in the end though, and met up with Sean. We had coffee and watched the planes landing and taking off. Then we went to check Sean's bag in. He accidentally gave them my boarding pass so his bag was put into the Hold and labelled with my name.

When it was the right time, I checked in. The Airport Wheelchair Service was ferrying me around so I was ahead of Sean. Then my name was called over the tannoy asking me to go to the check in desk. It was Sean. They wouldn't let him on the plane because he had no photo-ID. His drivers licence doesn't have a photo and he didn't think he would need a passport for a domestic flight. Poor love was so deflated and humiliated. There was nothing for it; we had to turn back and go home.

Wetherspoons at Gatwick Airport.


Despondant and Dejected, waiting for our meal to be served


One of the endless passages at the Airport


But first we had to wait while they found Sean's bag labelled with my name in the aircraft Hold. (I didn't check a bag in as I had hand luggage only). When all that was done, it was quite late in terms of restaurant opening hours and shops selling basic provisions were concerned, so we decided to eat at the Gatwick Airport Wetherspoons, where we had some welcome food. Then we went to wait for the Express train back to Tonbridge.

Gatwick Express Train to Tonbridge



I was up with nausea and vomiting until 3am. Its an ME/CFS warning sign. Only my elbow and my middle toes did not hurt. Today, my muscles hurt and are unresponsive and jelly-like. My throat is sore, glands are up, very thirsty, very dizzy and very tired. I am in bed and will probably have to stay there for some time. If it hadn't been for the excellent wheelchair service at Gatwick I would be in a much worse state, so I'm grateful for that. Even so, it was all far too much for me and I have decided that I will go NOWHERE without my scooter again. Yes, I know it is a nuisance, but feeling this awful because I did too much without it is much more of a nuisance. I just hope I get over it soon.

Sean preparing a salad for us


After all that, it was a great comfort to be home.

Microwave Matters and Other Stuff

It was Nanna's funeral yesterday. Caelyn and Nigel slept over at my house because they wanted to leave at 07h00 and Wendy would still be asleep then. She woke up at 09h45 and my mother took her to Kids Planet while I sorted out my bedroom. They came back just after 1pm and my mother had to rush off to catch her flight to Spain. She is safely in the flat there and hoping to have a relaxing and carefree time.

I am terribly tired and unwell, but nothing new there. Sean wants me to fly to Edinburgh with him on Saturday and the thought of catching all those trains to Gatwick then struggling onto the EasyJet is a very daunting one. As far as my health goes, it isn't wise, but sometimes you have to do things for the sake of a relationship. Sean has to make all sorts of concessions to my health and I have to 'give' a bit too. I plan to get the flight details from him this evening so that I can book a wheelchair.

This morning, my new microwave looked and sounded like it was working, but when I took the food out it was still cold. Tried again a couple of times with no better results so I phoned Currys, who told me to return it for a straight swap because it is still under the manufacturers warranty. Nigel very kindly took me up there and it was done. No hassle, except that the Kenwood I was returning had been on an end-of-line sale so it wasn't possible to do a straight swap as Kenwood no longer do that model. In the end, I got a Russell Hobbs but had to pay in an extra £33, which has rather blown the budget. (There is always something that blows the budget, I find.)

It is a combination microwave, grill and convection oven and it does everything the big stove does, but uses considerably less electricity. In the UK, we have been hit with energy bills going up by 35% so having things that use a lot less electricity is important. I wouldn't want to be without it as I use it far more than the main oven.

Nigel's aunt gave him a photo Nanna had of when he was 20, and I have restored it. Lots of marks, dust and scratches. Then I went on to put him against an airshow background as he loves aircraft. He didn't think it was right to put him against that background in a tux though!

This is the original photo that I started work on:



This is the 'work in progress'


And the 'Airshow'

Family News

Nigel's grandmother's funeral is on Tuesday and she had asked that children do not attend. She was of the old school that believed that a funeral was not a place for children, and I must say that I agree with her. My mother is off to Spain on Tuesday evening but she will help me to look after Wendy in the morning.



Wendy was named after Nigel's mother who died of breast cancer. His grandmother took him in after that, so there was a close bond, and of course Nigel is very sad. His family don't really function much as a family as we understand it, so thank God he has his own family now in Caelyn and Wendy. Nigel is much loved in our extended family too, and I hope it is a comfort to him at this sad time. I couldn't wish for a better son-in-law. Now that the UK new Academic year has started, he is back in College, working hard to get a good qualification. Best of luck, Nigel. You will do well because you work so hard at it.



Josie, Michelle, Caelyn, Nigel and Wendy have all got a nasty 'flu-like virus and it has hit them hard. My mother has heart and chest problems so viruses are bad news for her. Michelle has had asthma since moving to England and she usually ends up in the William Harvey Hospital for a few hours every year. She has a couple of hours on their nebulising machines, then gets sent home with medication. She works with people with Downs Syndrome and viruses aren't good news there either, as many of them have congenital heart problems. Caelyn is still feverish, Nigel is getting over it as it Wendy, who is still a bit grumpy with it. I, thank God, have escaped it so far. I have other problems though. On top of my ME or chronic Brucellosis, I am anaemic. I am on treatment for it, but get very breathless, have daily headaches and a racing heartbeat, a sore mouth and even more weariness that usual.



Michelle recently had another NVQ assessment and the assessor was very pleased with her. She has nearly finished her NVQ2 and is already thinking she wants to get her NVQ3 and possibly the NVQ Assessor qualification. There is a heck of a lot of work involved, but Michelle has never been scared of hard work. She has the brains, the talent and the willpower, and with all that going for her, she could achieve anything she wanted. She will go far.





Sean is in Greece this weekend. I will see him on Wednesday and we willl buy tickets to go to visit friends in Edinburgh next weekend. Sean is very considerate of my mobility and health problems and has said we will hire a mobility scooter in Edinburgh. He has realised that my energy runs out so fast that if they ask me to walk, I will hold everyone up and stop them enjoying themselves. It embarrasses me too. I will have to talk to Caelyn about looking after the dog and to Michelle about looking after the cats.



Here are a couple of my recent drawings. The one with all three girls in was a cut-and-paste job because I haven't got one single decent photo of them all together. They object to this collage, but there isn't too much choice as they don't/won't pose together for a decent shot.



A Story with Sean



Brushing Richard's hair

Woman's clinic death was suicide

There is a sad, tragic story of a 43 year old mother travelling to Switserland for Assisted Suicide due to the despair of having no help for pain, cognitive problems and debility caused by the illness known as M.E. I will paste the BBC story below, with some links to some very interestng letters. They aren't long, so please take a couple of minutes to read them. It is high time the voices of sufferers and their carers was heard.

A coroner has recorded a verdict of suicide in the case of a woman who flew to a Swiss clinic to end her life.

Nicola McNougher, 43, from Barnt Green, Worcestershire, had suffered with medical conditions for many years, the county's coroner's court heard.

These included severe cystitis and kidney problems. She was also found to be suffering from ME in the 1990s.

"My life has become an inhumane existence," she said in a statement written while she was in Switzerland.

The statement said: "Even voices create pain, including the voices of my own children. I simply do not wish to exist."

Coroner Geraint Williams said he had read out the 43-year-old's statement because he wanted her voice to be heard.

Ms McNougher, who left two teenage children, had worked as a teacher and a psychologist.

http://www.redditchstandard.co.uk/news56547.html

http://www.redditchstandard.co.uk/news56545.html

http://www.redditchstandard.co.uk/comment56542.html

RIP Nanna

Nigel's grandmother Kath Pile died on Friday. No further details are available yet.
She was in her mid 80s and Nigel lived with her after Nanna's daughter, his mother died, so she had a huge role in his life. Nigel will miss her.

Rest in Peace, Nanna.



She had been a Land Army girl during WW11. She and her husband Ron had been married for almost 60 years when he died. They had two children, Wendy who was Nigel's mother and who died of breast cancer, and Valerie who survives her. When I last saw her, she felt those losses keenly. At her age, its not a tragic death, but it is sad because she meant so much to so many people. I think she was ready to go Home and I'm glad she is no longer suffering, but people will feel her loss as she was a straightforward, good, honest, salt of the earth sort of person who cared about her family and who was good to them. There was a mischievous twinkle in her eye and she enjoyed a good laugh.

Rest in Peace, Nanna dear.

Weekend

On Saturday Michelle and I travelled with my mother to Milton Keynes as my cousin Barbara was celebrating her 25th wedding anniversary and her daughter's 21st.

As I lived in South Africa so long, I don't really know my English relatives, so it was great to see so many of them, and on such a happy occasion too. The party started at 2pm and the weather was superb so we were able to be in the garden for most of the time. There were 4 generations there, from newborn babies right up to great-grandparents, so starting the celebrations at 2pm was a brilliant idea.

Michelle liked it too and was glad to meet up with her 2nd cousin Karen again. She and Karen have a striking physical likeness. I think everyone enjoyed it, including Sean.

After the party, Sean and I stopped for a coke in a pub and his children came to join us there for a while. They are both music teachers who live in the area. Later, because I had gone beyond my health limits, I was nauseous. When that settled, I slept, but when I woke on Sunday, I felt as if I had been hit by a train. As soon as I got home, I went to bed. I'm having ME 'payback' but it is worth it. It was a lovely family event, and I'm looking forward to the next one.

Here is a photo of their fish pond:


And Sean:


And the family:

Animal Care and Human Health

I was interested to see these stories on the BBC. I was infected with two strains of Brucellosis in South Africa in 1996 and 12 years on, I am still sick. I caught the bovine strain, b. abortus and the goat strain, b. melitensis.

There is an interesting thing about b. melitensis. Florence Nightingale believed in good healthy food so when she was in Scutari, she and a lieutenant jointly bought a milch goat. Eventually, Miss Nightingale came down with Crimean fever and was sent home to England where she stayed in bed for 17 years. She could not bear light or noise and had severe pain. She could tolerate only one visitor at a time but she wrote some public health recommendations that still apply today. When I trained as a nurse in the 70s, we were told that Florence had become 'neurotic' when she went to bed for 17 years. Poor Florrie! To be so badly misjudged! In the absence of antibiotics, she had no choice but to go to bed. No wonder she complained of severe pain and other unpleasant symptoms. Search the internet for Florence Nightingale + brucellosis and see what you find. It is an eye opener. You could also try searching for Crimean Fever.

Anyway, the BBC articles:
http://news.bbc.co.uk/1/hi/health/2668517.stm
Villagers in a remote part of the former Soviet Union are contracting a disease from their animals which can cause long-term health damage.

Doctors are working in the Kock Kor valley in Kyrgyzstan to help villagers understand how to avoid becoming infected with brucellosis.

The condition, which can be caught by coming into contact with animal products, perhaps by milking a cow, drinking milk or eating cheese, can cause a range of symptoms similar to the flu, including fever, sweats, headaches, back pains, and physical weakness.

It can also cause severe infections of the central nervous systems or lining of the heart, or long-lasting or chronic symptoms including recurrent fevers, joint pain, and fatigue

Herd Slaughtered after Outbreak
http://news.bbc.co.uk/1/hi/england/cornwall/3551497.stm
The herd of cattle at the centre of a brucellosis outbreak in Cornwall has been culled.

All 124 cattle, from Landare Farm near Liskeard, have been slaughtered as a precautionary measure.

A bull is suspected of being at the centre of the outbreak, the first in England for a decade.

The disease, which can spread to humans, was confirmed on Thursday after a number of cows on the farm were said to have miscarried.

Brucellosis
Causes abortion in pregnant cows
Vets, farmers, meat inspectors, abattoir workers most at risk
Causes mild flu-like illness, while others experience recurrent or chronic fever, which can be very serious and last several years
Last case in England was 1993

New ScrapBlog

I've done a new scapblog. This page will take too long to load if I post it here, so I will just post the link. I hope you like it. On the bottom of the screen, over on the right is a sliding button depicting the tortoise and the hare. For better viewing, you should slide it towards the tortoise otherwise it goes too fast to see properly.

New ScrapBlog

Photobucket Album

Picnik

As you know, I use Photobucket to store my photos. One of the reasons for that is because Blogger has an Image limit and I am nearly up to my limit. I can put a link to a photo stored on Photobucket in the Blog and you will see it exactly as if it were hosted by Blogger. So you still see the photos and Blogger isn't nagging about the quantity of my images.

So why have I called this post 'Picnik'? Picnik is a free Image Editing application on Photobucket and I have just been having fun experimenting with it.

Further down, I have posted a slideshow of photos taken at Lathe Barn, also with a free application on Photobucket. I'm using their Scrapbook program too. They have other applications too so I'm going to post a link to their applications page so you can see if there is anything there that takes your fancy.

Photobucket Applications Page

Here are some pictures I have worked on today. I hope you like them.

Abso-bloody-lutely Charming!!

http://www.sundaymercury.net/

MIDLANDS JOB LOSS GIRL REFUSED BENEFITS

A Midland graduate has told how she had to abandon her dream career due to a
long term disease – and was then refused benefits.

Animal lover Kate Davies, from Stirchley, Birmingham, was thrilled to land a
job as a veterinary nurse. Her new role meant she and boyfriend Will Cross,
27, could afford to buy their first house together. But a condition which has
plagued her since childhood meant she could simply not cope with the stresses
of a full-time job.

The 23-year-old suffers from chronic fatigue syndrome, also known as ME. The
condition leaves those who have it feeling constantly exhausted. Her doctor
advised her that she would be unable to work for a year. Yet when Kate, 23,
turned to the state for help through the benefit system she was told the
office was unable to help. And bungling JobCentre workers added insult to
injury by mistakenly sending her letters demanding sick notes as though her
claim had been approved.

Former Birmingham University graduate Kate said: 'I try to remain calm but
this gets me so angry. My doctor has said that I should not work. It will be
at least a year before I can work. I think it is disgusting that they have
turned down my claim.'

In September last year Kate started her apprenticeship at the Clent Hills
Veterinary Group in Bromsgrove, Worcestershire. But it quickly became clear
she would not be able to work full-time. Kate was having days or weeks off
from her new job and in January she had to give it up. Her doctor’s advice
was to not work for 12 months and Kate, who is originally from Wolverhampton,
had to get specialist treatment at Birmingham's Queen Elizabeth Hospital.


Shocked

With a mortgage to pay and only one household income from Will's work as an
architect's 3D designer, she turned to the government for help. But she was
shocked when benefit chiefs refused her claim for incapacity benefits. Kate,
who has a dog, a cat and three guinea pigs, was told she had not paid enough
national insurance contributions to qualify for incapacity benefit.

And they even sent her letters saying she must provide new sick notes if she
is to receive further payments, as though her claim had been approved after
all. 'I cannot describe how it is to someone who has not experienced it,
English Literature graduate Kate said. You physically cannot get out of bed
in the morning. One of the triggers for ME is stress, and getting letters
telling me to show sick notes for benefits I have been refused, was very
stressful. There is no pattern to my condition, one day you can be fine the
next you cannot move.'

Katie James is a spokeswoman for the Association of Young People with ME.
They offer help, advice and support to people aged between five and 25 who
suffer from the condition. 'There is a problem with the recognition and
understanding of this condition by the benefits and welfare staff,' she told
the Sunday Mercury. 'This is because there is no definitive test it is really
a matter of excluding every thing else first, if there is nothing left they
turn to ME. There is also a problem with employers who need to recognise they
need to be flexible with these people. ME is recognised as a disability
illness and she should be entitled to incapacity benefits.'

The Department of Work and Pensions says it cannot comment on individual
cases but confirmed that some young people may not receive incapacity
benefits. 'We cannot comment on individual cases,' a DWP spokesman told the
Sunday Mercury. 'Incapacity Benefit is payable to people who satisfy a number
of conditions, one of these being that a specified level of National
Insurance contributions have been paid in relevant tax years. Younger
customers under the age of 25 who require additional income may apply for a
benefit called Incapacity Benefit in Youth if they have medical evidence to
prove they have been incapacitated for the qualifying period of 28 weeks.'

Help and advice dealing with ME is available on http://www.ayme.org.uk

Fun at Lathe Barn

A Couple of Woozle stories

Wendy has a sweet and sharing nature. She tries to help if she thinks someone is upset.

Last week, she asked Caelyn to take her to the shop for some sweets. Caelyn wanted to wait at home until Nigel got back from college so she said "No. Mummy hasn't got any pennies". Wendy went away then came back with her Piggy Bank and held it out to her mum and said "Wendy share with Mummy" I thought that was so sweet.

My mother lives in a bungalow with a garden and she has found much pleasure in growing things. Wendy visited her last week and was helping her great-grandmother pick green beans for dinner. When that was done, she told Josie "you stay there" and went off to another part of the garden and returned with two raspberries, one for Wendy and one for Ouma. This went on for ages and she picked blackberries too, also two at a time. You have to go through a gate to get to the part of the garden where the berries are and she would open the gate, close it behind her then go to pick the raspberries, open the gate again, close it again, feed my mother her berry, tell her to "you stay there" then toddled off back through the gate ....

Surprise, surprise!

We had such a big surprise yesterday. The girls' father sent them a postcard each. They were rather overwhelmed as they had been out of contact for ages. I used to get so upset when he didn't get in touch on special days because the girls would hope and hope and be disappointed. I let them phone him as he supplied a phone number. They talked for a long time and I was very pleased that bridges are being built. They will phone him again soon.



I have a pay-as-you-go mobile. My mum told me about Dial to Save which gives you cheap international pre-paid calls to and from mobiles. I put £5 on and could speak to Andy's mobile in South Africa for 190 minutes. You dial a London number using the free minutes that come with your mobile tariff. The London computer tells you how many minutes you have available depending on how much credit you have. It is a lot cheaper than phoning a UK mobile I can tell you! As it is pre-paid via top up, you can't run up huge phone bills. No nasty shocks, just a lot of pre-paid talktime. Like ordinary PAYG, you talk until your credit runs out and when you need more, you just top up. I will definitely use them again. This is their web address http://www.dialtosave.co.uk/international/ and for extra security you can pay via PayPal.

Family News

This is Wendy at 2 and a half. We were looking at a photo of her taken at 17 months and it is surprising how much her hair has grown.



Big difference in such a short time.




Nigel is back in College doing higher level studies in motor mechanics. Kate had her Interview at the hotel in Hythe to work in their beauty salon. They use special products and Kate has to be trained in their use before she can start work there. She starts her training on Wednesday and after that she will work part time and flexi time. Apparently the salon gets very busy at times. When she has settled in, they want to send her on a therapeutic massage course.

I couldn't think of a better job for her. She can't do anything physically strenuous because of her kidneys and being dyslexic, can't really do clerical work. The salon at the Spa hotel is quiet so that the clients can relax. Kate will only work on one person at a time and there is a lovely ambiance. This will fulfil her need to be creative and give her the self respect of having a respectable and responsible job that won't be too much for her, while fitting in with her parenting and home life commitments. I think she will get a lot of satisfaction out of it.

Michelle is still loving her job and is nearly finished her NVQ2 qualification. She means to start on the next level after that. The NVQ2 has shown her just what a responsible and significant vocation she has. She loves her work but it has only been since she started the studies that she realised how complex and multi-dimensional her work is.

Both of my girls are doing things they love and I thank God for that because work that brings so much satisfaction and self-respect is not really 'work' at all. There is a vast difference between having joy in a vocation that you love and just having 'a job'. I regard that as a gift of God and feel that they are blessed. So much so that I would like to ask Fr Nesbitt to offer up a Mass of Thanksgiving for all the blessings in our lives.

Scrap Book

Pain and Cognitive Problems

I have had a couple of days in bed but they don't seem to have helped much. I have a lot of pain and of course, nausea. I'm going to see Sean tomorrow. I cancelled tonight and he was upset as he feels we don't spend enough time together.

That may be true but when I'm in pain and feeling ill, I want to be on my own and in my own bed with my cat. Lovely though Sean is, it is impossible to rest with him around. He wants to talk or do things, not unreasonably, when I just need a handful of medicine and just "be".

I know I look pefectly ok, and I wish I was. When you feel ill but look ok, other people assume you are as well as you look and they do not make allowances. Their expectations can be burdensome. It is for these reasons that I am supporting the Invisible Illness Awareness Week.

Scrapblog

I have started a Scrapblog. I put two Scrapblogs on here but they took forever to load and some people have slow Internet connections, so I have deleted the two Scrapblogs and I will give you the Web Address instead so you can look at them if you want to. It is much quicker and easier to look at them on the other site anyway.

Here is the address: http://www.scrapblog.com/SuesNews

10 Things Not To Say

10. You can't be in that much pain
9. Stop being lazy and get a job
8. You just want attention
7. Your illness is caused by stress
6. No pain. . . no gain!
5. It's all in your head
4. If you just got out of the house...
3. You're so lucky to get to stay in bed all day.
2. Just pray harder
1. But you look so good!

Reprinted with permission of Lisa Copen, Copyright 2007, National Invisible Chronic Illness Awareness Week, http://www.invisibleillness.com

To add one of my own:
It's your diet. You need to be eating something you are not eating or you need to stop eating something you are eating. Grrrrr!!!!!!!!!! If only it were that simple!!

Invisible Illness Awareness Week

96% of serious illnesses are 'Invisible' and not obvious to casual observers. Conditions like Lupus, heart disease, cystic fibrosis, brittle diabetes, rheumatoid arthritis, myofascial pain syndrome, bilharzia, ME, bipolar disorder, cancer and a host of other conditions cause significant suffering without being obvious to other people.

It is drearily common for people to be accused of not being ill or needing a parking permit or attention seeking. Of course it hurts, but how do you handle it? Put up with ruderies and ignorance or go into gruesome medical details with a hostile and interfering stranger? Why are people so rude, anyway?

Last time I travelled on South West Trains, at Brockenhurst Station, an elderly lady had booked Travel Assistance because she could not climb the stairs to cross the bridge and go down the stairs on the other side to reach the other platform. The Platform man who was supposed to be helping us was telling me that he 'knew' the old lady and she could cross the bridge if she wanted to. He then asked me if I thought people should be made to do things before they lost their abilities due to lack of use. He seemed surprised when I said 'not necessarily'.

At her age, she could easily have had a low cardiac reserve, for instance, and 'pushing herself' to cope with all those stairs could have caused her to drop down dead right there and then! It is too bad that a railway porter feels free to make medical pronouncements on people to whom he owes a duty of care. I had never met the lady so why would he think he could discuss her with me? I wanted to have it out with him but he dashed off to meet an incoming train. I am still annoyed about it though.

Invisible Illness Awareness Week is American but I firmly believe it is something that should become worldwide. Certainly in the UK, people are quick to make snap judgements that are not helpful, to say the least.

Why not watch this brief video? It is very well put together.


Find more videos like this on Illness-Disability-Healthcare-Caregiver Ministry Network