The Return of Miss Piggy

I had a letter from the hospital today, from Mr. Pullan, my surgeon, with the result of my recent CT scan. As I’d thought, and had not worried about at all, was the absence of any malignancy, but the parastomal hernia is “substantial.” The last CT scan showed that some fat had come through, and Mr. Pullan has been keeping an eye on me. Now it has returned, he says that if I experience further symptoms, it will need to be repaired, and he is going to see me later in the year, and we need to keep in touch.

I do not really want things to get worse before it is repaired. If I have to wait for another blockage to occur, this will mean another emergency operation like I had back in February, when the only surgeon available was a general surgeon who was not qualified to insert the reinforcing mesh around Kermit, my stoma. (What else would I call the hernia but Miss Piggy?) A repeat performance would be disastrous because there’s a limit to how many times you can do this, and I could end up with Kermit being moved to the other side, with even further risk of herniation. What I want is to have elective surgery, performed by Mr. Pullan, who is a specialist colorectal surgeon, who will do a more permanent repair with the mesh. I knew that sutured repairs, like the one I had at the beginning of the year, have an eventual 100% failure rate, but I didn’t expect it quite so soon – this has failed in less than a year.

The last thing I want is emergency surgery for which I am unprepared, and already weakened and very poorly as a result of a blockage. What I went through at the beginning of the year was quite horrendous and I think Mr. Pullan is as anxious as I am to avoid that, but he is not prepared to operate unless it’s absolutely necessary because of the associated risks with major surgery.

Anyway, we shall just have to wait and see. It’s all rather unsatisfactory to say the least! At least I know that another operation is pending, but it’s just a question of when.

At least today I am feeling a lot better with my M.E. and hoping it will last this time. I’ve had far too many days recently with extreme fatigue and brainfog and the resulting inability to do anything. It’s so hard to pace yourself because there’s always a lot of catching up to do after off days, and if you do too much, you end up with more post-exertional malaise and the need to rest again. Boom and bust… I was much better at pacing in the old days before I got cancer. When I was recovering after the end of my chemo I felt so well and wanted to do everything, and seemed to have lost the art of pacing, with predictable results!

To more cheerful things! Here are some photos of the kittens taken this afternoon, sitting on the scratching post which I’d brought into the kitchen for their daily clicker training. They are now 19 weeks old and getting so big! My hubby says they are growing, but not growing up – they are still utter babies!!

On high alert – my hubby was outside the kitchen window messing about in the patio and they were very interested in all the sounds coming from the open window! They look like two little meerkats on a train!

They are always together. When I separate them to do the clicker training, the one shut out cries – especially Ruby!

After our worry over Ruby earlier in the week when she was off her food, she is now fine again and is eating well. She was obviously feeling under the weather but the vet couldn’t find anything wrong, and she was obviously not sickening for anything, which is a relief.

I had a very busy morning and was cooking something that took rather a long time, and I had no end of trouble from two naughty kittens who kept rushing into rooms I’d shut them out of every time I opened the door! Lily was the worst offender and wouldn’t come out – they are like greased lightning when they don’t want to be caught, and even the sight of the clicker and the little box of treats took longer than usual to attract her more than what she was interested in. When they are focused on the training, they are pretty good and will come when called etc. but as soon as there’s another attraction, it’s a different story! This wasted a lot of precious time this morning, and we sat down to a very late lunch indeed!

A Brightly-Coloured Embroidered Piece

Having a bad day today with my ME, probably as a result of everything that went on last week – going to the hospital was a bit stressful, and being left in limbo regarding whether or not I have to have further surgery. I’ve also been pretty busy with things, and this week doesn’t look too different, with two separate visitors.

I spent most of the day resting on the recliner, trying to catch up with some of the TV recordings that have been mounting up, and being on the computer. I did manage to do another piece of embroidery for the bed half-tester, though.

I am very pleased with this brightly-coloured piece. I didn’t put any sparkly thread on this one.

Here’s a detail shot.

I really wanted to spend some time in the studio today but I was just too wiped out. Hopefully tomorrow I shall feel better again.

Two Steps Forward, One Step Back

A somewhat frustrating day, but I have managed to achieve quite a bit today!

There have been some more firsts over the last couple of days: yesterday I did my first online grocery shop, and today it was delivered. It was a big shop, because my larder was fairly depleted, and I also needed new ingredients for the recipes I am keen to try. Yesterday I cleaned out the fridge freezer - very glad to have done this before the grocery delivery. It is all looking sparkly and clean now!

After putting the stuff away from the delivery, I suddenly realised that all this activity was starting to catch up with me, and I ran out of energy and had to rest. My idea of cooking supper bit the dust, and my hubby was back in the kitchen again... He is very good, and willing to take over when the need arises, I am glad to say. A bit frustrating, though. I am still very limited by my small reserves of energy. I so want to run before I can walk, and need to remember that I still have M.E. and will still suffer from “post-exertional malaise” – when the consequences of doing too much catch up with one, but the payback is delayed by a day or more. I have certainly been very busy over the past few days, trying to get the kitchen straight before my first online grocery shop.

I am already experiencing the problem of “too many cooks spoil the broth” – for the meal he prepared, my hubby used some curry sauce I bought today, that I was planning to use it for something else! This transitional period, when we are both cooking, is bound to be problematic, and certainly more difficult than when he was doing all the cooking and shopping. It’s going to be hard to keep track of exactly what I’ve got in the larder and planning the meals, and he may be called upon to do the odd bit of shopping until I can get straight.

While all this is going on, I still have several upcoming hospital appointments:

Thurs. 12th Nov. (tomorrow): Pre-assessment for my procedure next week.

Tues. 17th Nov.: Appointment with the support garments lady in the stoma clinic.

Wed. 18th Nov.: Investigation of what is left of my rear end under general anaesthetic, by my surgeon, Mr. Pullan, in the Day Surgery Unit. His registrar was unable to make a thorough investigation at the end of October because it was too uncomfortable, and it required more time than he had.

Thurs. 19th Nov.: CT scan, to see if there is any evidence of cancer still in my body.

Fri. 27th Nov.: Bloods and port flush on the Ricky Grant (chemo) Day Unit.

Mon. 30th Nov.: Oncology appointment, when I am hoping to get the cancer all-clear!

I had two letters from the appointments clerk at the hospital today, one relating to my pre-assessment appointment tomorrow, and the other to the procedure itself, together with a leaflet detailing what to expect and how to prepare.

Yesterday I counted up just how many appointments I've had at the hospital, and not counting my stay in hospital for my surgery, it has so far been 43! Add on the ones to come that I know about and it's 49! I have spent a great deal of time there, and my hubby has driven me there every time, and been so supportive throughout.

Now the kitchen is sorted, I am hoping to be able to start cooking in earnest, and also to be able to get back to being creative in the studio again, but with all these hospital visits, I’m not sure how long it will be before I’m in a more relaxed and manageable routine again. I just have to learn to pace myself and not expect too much before I’m ready. Having felt so much better, and then having a bit of a crash this afternoon, this is very hard. I’m still far from where I need to be, and it’s going to take time. It’s all about getting the balance right between activity and rest, and not getting frustrated, and I’m not very good at this! You’d think after living with M.E. for 8 years that I’d have pacing down to a fine art, and before the cancer, I was managing it pretty well, but this has upset the balance and now I’m in the recovery period, it’s a whole new learning curve and I feel like a novice again.

Third Felt-Making Class, and News about Beatrice

Last night we made flowers in the felt-making class. I had had a pretty stressful day (OK, not that stressful by normal standards, but with my M.E. I don’t cope too well with things going wrong) and I seemed to spend the whole day wading through treacle, with everything going just a bit wrong, and feeling very frustrated that all my energy seems to be used for boring things that have to be done, and then there’s none left for Art. The final straw was Tesco phoning to say they would be late with my grocery delivery and they arrived five minutes after we should have left for the class, and I had to make everything kitty-proof in the kitchen, and ram all the chilled stuff willy-nilly into the fridge till I got back and could sort it all out…

As a result of all this, I wasn’t on top of things in the foggy brain dept. and completely forgot to take any photos of the process of felt-making until it was all done! So the pictures that follow are all of the finished pieces at the end of the class, and then my pieces at home. I am sorry that the following description of what we did will therefore not be illustrated.

Our teacher began the class by displaying a collection of her own pieces – various different flowers, and a little bag with a flower embellishment. She explained the principle, and then gave us a demonstration, and then we all went off to make our own.

She started us off with a two-layer flower but some people were more ambitious and went to three layers. In order to prevent the layers from felting together, you have to put some bubble wrap in between. The sandwich we built up (for a two-layer flower) were therefore: a piece of bubble wrap with bubbles facing up, laid on a towel to prevent too much movement, then the wool fibres for the first layer. On top of this was a piece of bubble wrap with a hole cut in the centre, with bubbles facing down, then the wool fibres for the second layer. The sandwich was topped off with a piece of bubble wrap, bubbles facing down, with no hole cut.

For the first layer, we first laid down some green fibres to form several leaves, in a basic star-shaped formation, being careful not to make it too thick in the middle. Over this was laid a circle of the chosen colour for our flower, again, making sure it wasn’t too thick in the middle. The fibres were laid down in opposite directions as we had been taught in previous classes, and also in a circular formation. I chose orange for my poppy, with a final layer of some streaks of red radiating outwards to form some shading.

Each layer of bubble wrap was sprinkled with hot soapy water to aid the felting process, as was each layer of wool fibre.

The bubble wrap with the hole was laid on top of this first layer, and then the second layer of fibre was laid down, repeating the process for the first layer, and this time making the circle slightly smaller, so that on the finished piece, the bottom layer would extend slightly beyond the top layer.

The final touch was to pull out a small length of wool roving so that it was long and thin, and twist it between our fingers and form it into a circle, which was laid into the centre of the flower – our teacher had done this with green, but I did mine in black as this seemed more realistic for a poppy. Again, one had to be careful not to make this too thick. (I had also laid down a few fine strands of black radiating outwards from the centre.)

If one wanted to make a three (or more) layered flower, another piece of bubble wrap with a hole cut in the centre would be added after layer two, and always a solid piece to go on the top.

The idea of the separating layers of bubble wrap was to act as a resist, preventing the fibres from felting together between the layers. Where the hole was cut, the fibres would felt, thus joining the layers in the centre and leaving the outer part free.

The whole thing was likely to move around quite a bit, so we had to start off very gently, working mostly on the centre to start with, to anchor everything. After our previous classes, this was a pretty gentle felting exercise altogether, with only the rubbing stage, and no “rocking and rolling.” After a while, we started to rub the outer part, and when it was starting to felt, the whole thing was flipped over and the back was rubbed.

When it was partially felted, we lifted up the bubble wrap and cut slits with scissors to create the divisions between the petals. I made sure that the slits in the bottom layer did not line up with those in the top layer. The felting process was then continued, and every now and then, the slits checked, to make sure they had not felted together. I found when it was partially felted that the layers had shifted somewhat, but at that stage I was able to manipulate it a bit, and pull the centre back into the middle.

Eventually, sufficient felting took place to enable us to pull away the bubble wrap with the hole, and the piece was then rinsed, and screwed up and rolled around between our hands to finalise the felting process.

The whole process took only about 20 minutes, so we were able to make a second flower – one or two people even made three! I decided to make another one the same, but slightly smaller, and when I came to the rinsing and rubbing between my hands stage, I got a bit over-zealous and it felted a bit more than I’d hoped, but I pulled it back into shape and it was fine, albeit a bit thick.

When I’d finished my second flower, there was still time to spare, but not quite enough for another flower, so I decided to make a leaf, using the paler green for the basic shape, pulling it out to create indentations, and then I added some fine pieces of darker green to form the veins. Everybody loved it!

Now for some pictures of the completed work of the class. In the first one, the teacher is going through them one by one and talking about them with the person who made them. Mine are at the bottom of the picture.

Here are all the pieces, arranged in a beautiful garland!

Taken from a lower angle, showing the multiple layers. The one on the far right was tied up so that the petals would dry in a more upright position. My little selection is at bottom left.

As usual, we were instructed to rinse the pieces out when we got home, with some vinegar in the water, to neutralise the alkali of the soap and to prevent rotting.

Here are my pieces drying. I have folded the leaf in half and secured it with a plastic clip in the hope that it will dry with a bit of dimension to it.

The pieces are almost dry now. Here is the leaf:

The large poppy:

The small poppy:

This is a little bit mis-shapen on one side, but this doesn’t matter because they will eventually be sewn together as a group.

The next picture shows the backs of the pieces. You can see the leaf shapes which are felted to the backs of the bottom layer. In future, I think I may separate these leaves from the base of the flower with another piece of bubble wrap, but as they will be mounted on something and it won’t show, it doesn’t really matter.

The final photo shows the possible arrangement of the pieces for the finished group. I think I may attach this to a wire hair-band or hair clip – I have a collection of blanks for embellishment in my stash.

We were talking at the class about what we might do with them, and people were suggesting embellishing bags, making brooches, etc. I could make wheelchair ornaments from them!! They could be used to embellish cards or mixed media pieces. So many possibilities!

I am very pleased with my efforts from this class. Making flowers is a lot less strenuous than other types of felt, and they can be made up surprisingly quickly. They would make lovely gifts, and being lightweight and non-breakable, would be easy to post, too.

The observant ones among those of you who follow my blog, will notice that the background I have used to photograph my pieces is my unfinished green masterboard. It looks so pretty that I may leave it as it is!

After all my busy-ness of yesterday, today I am suffering from classic M.E. post-exertional malaise, and I have felt like nothing on earth. I was very sluggish this morning and found it hard to get out of bed, and have spent the day on the recliner, sleeping for most of the afternoon, and blog hopping in between!

News about Beatrice

Our older cat Beatrice (now 14) has had a lot of trouble with urinary tract infections recently, and after the latest course of antibiotics failed to deal with the problem, today she spent the day at the vet’s. She had a general anaesthetic so they could do a scan of her bladder, and they passed a catheter to get a decent urine sample. After each course of antibiotics we have to get a sample from her which is not very easy! The vets have devised a clever way to get samples from cats. You put down a litter tray containing non-absorbent plastic granules, and they are supposed to pee in this. You can then easily draw up some urine with a pipette and put it in the sample bottle. However… Beatrice has never been one to oblige and do the right thing, and holds out for hours and hours and flatly refuses to pee in the tray! We have to shut her in the bathroom to keep her separate from Phoebe (we don’t want her pee getting analysed by mistake!) and once, my hubby put a bed in there for her, but she peed on that. On another occasion she peed on the bathmat. Following this, she has been shut in with absolutely no home comforts at all, apart from her food, and she spends the time sitting on the edge of the bath! We can peep through the engraved glass door and see what she’s up to. Eventually she will pee, usually in the corner of the room. My poor hubby scoops up a miserable little sample, and this time, the vet said it was so contaminated with dust and grit and such, that he couldn’t really examine it under the microscope! This last time, she was in there for two whole days without going, which was freaking my hubby out until I looked it up on the Internet and found that cats can easily go 48-hrs plus without going! It seems to be a battle of wills with Beatrice…

Anyway, everything went OK today and she has no stones or crystals, and no growths in her bladder, and so far her kidneys seem to be OK (kidney problems are very common in older cats). Her sample has been sent off for analysis, and they will know after this what sort of antibiotics she should be on. When my hubby phoned this p.m. for a progress report, he was told that she was OK, but still asleep, wrapped in a blanket with a hot water bottle to keep her warm! He picked her up at about tea time and she seems fine. The vet told my hubby that Beatrice is their favourite cat! (I said that I wondered if he said that to everyone lol!) She is such a good girl at the vet’s, and doesn’t bite or scratch, and she’s such a little character that everyone loves her.

Remember this photo, taken after she had the lump removed from her neck?

Such a little dink in her premature baby-grow, the only thing small enough, which she had to wear to stop her scratching herself!

WOYWW 185

Another Wednesday, another opportunity for a worldwide mega-snoop at everybody’s work desk to see what we are all up to, and how tidy or otherwise we are! Click on the WOYWW link in my sidebar to go to Julia’s blog and find out how to join in the fun.

Not a lot has gone on on my desk this week. As it stands now, on the right at the front are a few more zentangles on ATC-sized cards ready for filing in my new album – I’ll do another post about this when I’ve drawn a few more.

Centre stage is the Reverend Ernest Bear. I made him for my hubby for our first Christmas, when we were engaged, in 1985. I was horrified to notice the other day that the felt on his paws has completely worn through, so he’s going to the Bear Hospital for some plastic surgery – you can see the material for the skin grafts on the right. He’s having beige paws with little red patches sewn on with a bit of embroidery, which will go nicely with his braces. I notice that his clothes are also quite grubby and due for a wash, so it’s Makeover Time for One Small Bear.

On the left is my Tattered Time album, with absolutely no progress having been made all week. I have got my final small circle punch, though – it arrived from Amazon yesterday morning, so I’ll be able to get on again soon.

Actually this is the reason for such a lack of progress on the art front this week:

I had another marathon clearing session and have almost completely cleared the second of the 3 sections of my huge shelving unit – the first section I cleared a while back, and it’s been demolished. Once section 2 is empty, it will also be taken apart, and these 2 sections I am giving to Wonderwoman, my home help, for storage in her chalet. I am afraid I was a bit stupid doing as much as I did in one session but I got a bit carried away, and it’s taken me most of the week to get over it! I’ve spent most of the time since on the recliner, and have only managed to do a few zentangles, and type up a letter or two to send to friends for Christmas. Duh. I don’t think I will ever learn… Still, I do feel very satisfied with the results of my labours, but now it’s even more of a sweat getting at things as they are all crammed tightly into section 3 of the unit! The floor of my ARTHaven is still quite a mess, and it’s got to be cleared before Wonderwoman arrives this afternoon…

Have a happy WOYWW, everyone, and a great week ahead, full of inspiration and creativity!

WOYWW 160

Sorry, no photo of my desk this week as I’m too poorly to do anything, after seriously overdoing things over the last week or two and then the craft show on Saturday. Scroll down to see what was on my workdesk at the craft show!

Hopefully I’ll be back to WOYWW properly next week.

ATCs – thank you so much, everyone who has sent me one so far. I have not forgotten you and just as soon as I am up to it, you will be receiving yours from me. I’ll be doing a post about the exquisite little works of art I have so far received!

Hugs to you all and wishing you a very happy WOYWW.

M.E. International Awareness Day

 

Today, 12th May, is M.E. International Awareness Day. Those who read, or follow, my blog, will be aware that I suffer from this disease. I don’t usually write a lot about it because there are other things that I prefer to write about, and I do not want this illness to define me, but it is a major part of my life, and the disability that results from it affects everything I do, and limits greatly what I am able to do. It has forced me to re-think many of my priorities and adjust my way of life to make room for it, and it has had a profound effect on my family. I have been very fortunate that for most of the time since I have been ill, I have been treated well and taken seriously by the professionals responsible for my care, but this is far from the experience of many, which is why I am writing this.

I thought I would take this opportunity today, to join the M.E. community worldwide in helping publish the facts about the illness, and to try and dispel some of the myths and downright lies.

First of all, the disease itself, Myalgic Encephalomyelitis, is a complex neurological disorder, categorised by the World Health Organisation as a neurological condition, along with Multiple Sclerosis and Epilepsy, in their International Classification of Diseases (ICD), under the number ICD-10 G93.3. The rule is that no condition can appear in two different classifications, so if it is classified as a neurological condition, it cannot also be classified as psychiatric.

The symptoms of the disease are many and varied, making diagnosis difficult, but certainly not impossible – with the right training and experience, a diagnosis can be relatively simple as long as the correct diagnostic criteria are used, which exclude other, unrelated conditions. Symptoms can affect every system in the body – central and peripheral nervous system, autonomic nervous system, endocrine (hormonal) system, digestive system, immune system, cardiovascular system – to name a few. Sufferers from M.E. have cognitive difficulties (brain fog, short term memory problems, etc.) and can suffer from depression and emotional lability, sleep problems (unrefreshing sleep, interrupted sleep, disrupted sleep patterns sometimes resulting in a complete diurnal reversal so the sufferer sleeps all day and is awake all night, very vivid and disturbing dreams), and many digestive problems, including IBS, reflux, and food and chemical intolerances. One of the main symptoms is an overwhelming and pervasive exhaustion made worse by the slightest exertion; in addition to this base-line, ongoing fatigue, one of the key diagnostic features of the disease is “post-exertional malaise” – with an onset maybe several days after the activity, and lasting proportionately very much longer and with greater severity than the fatigue suffered by normal people after overdoing things. Overdoing things for a person with M.E. may be something as simple as preparing (or even eating!) a meal, or having a telephone conversation, or getting dressed. This is not just tiredness as experienced by the normal population but something quite different and much more extreme. There is also the extreme and rapid fatigability of muscles and lack of stamina, causing muscular pain after the smallest exertion, which can also cause post-exertional malaise. This, and associated joint pain, can lead to quite severe disability, which can be helped by the use of mobility aids.

These are just a few of the problems experienced by M.E. sufferers. It is certainly not an exclusive list! The severity of the illness varies from person to person, and from time to time in an individual. It can range from a mild form where an individual may be able to hold down a job, but have little energy in reserve for domestic or social activities outside work, to an individual being completely bed-bound, sometimes for many years, unable to tolerate light or sound, in constant and agonising pain, and having to be tube-fed because they are unable to feed themselves.

There is a move to “re-brand” this illness as “Chronic Fatigue Syndrome.” (This is one reason why the condition is now often known as “ME/CFS,” to try and avoid confusion, but in my opinion, it just adds to the confusion!) This, to most of the M.E. community, is to downgrade the condition to something more trivial. There is much more to the disease than simply being tired all the time. Chronic fatigue is not the same as “Chronic Fatigue Syndrome,” but merely one of many symptoms of the illness. Chronic fatigue may also be a feature of several other conditions, such as Multiple Sclerosis, Cancer, Rheumatoid Arthritis, Depression, AIDS, Hypothyroidism, Anaemia, or post-viral flop.

There is no treatment. It is more a question of management – most people with M.E. agree that the only sensible way to manage the condition is by pacing – short periods of activity interspersed with numerous rest periods, and the breaking down of tasks into small, manageable chunks, and the planning of one’s days to allow for unavoidable periods of more extended activity by factoring in rest periods, and the ability to say “No!” even if one wants to do as much as one can! Pushing oneself to do more each day, to increase one’s activity level (as in the government’s recommended “Graded Exercise Therapy”) is extremely counter-productive for someone with M.E., and can actually be dangerous, leading to serious relapse or even, in some cases, death. “Living within one’s energy envelope” by pacing, is the only option available if one is to remain stable, or to make small improvements.

There are many physical markers detectable in individuals with M.E., with the right testing, but these tests are not normally made available. In the UK, no public funds are devoted to biomedical research, which is carried out by charitable organisations and dedicated physicians and researchers who sacrifice a great deal to enter an area of work which is often despised by the majority of the medical and scientific establishment, and which does not attract research grants. Even today, approximately 50 percent of doctors still fail to recognise that the illness exists at all, and there are many horror-stories of people being sectioned under the Mental Health Act, and children being forcibly removed from the care of their parents and placed in psychiatric institutions.

This scandalous state of affairs is not helped by the political background to this disease. You would not think that politics should come into the diagnosis and treatment of any disease, or the attitudes of physicians and other professionals to their unfortunate patients, who suffer enough from the condition itself without having to bear the brunt of deliberately engineered political dogma designed to denigrate the condition and drive funds away from proper research, education of professionals, and provision of much-needed help for sufferers and their families.

Despite the huge body of evidence to the contrary, the general consensus among the decision-makers, especially in the UK, is that the basis of the illness is psychiatric – if not in the initial cause, then in the perpetuation of the condition. This means that government monies are being directed towards a psychological paradigm and away from the biomedical approach, with the result that patients are short-changed in every way, and frequently not taken seriously, or treated with the dignity and respect that every patient has the right to expect. Many are refused access to mobility aids and benefits.

The majority of M.E. charities in this country receive no government funding, and are keen to educate the medical and associated professions, the government, the media and the general public about the truth of the matter, and to try and promote this “poor relation” to the status of being taken seriously, to the extent that decent funds are made available to research the cause, treatment and ultimate cure for this terrible disease, which appears to be on the increase.

For more information on the illness, and the scandalous political ramifications, a good place to start is the excellent charity Invest in M.E. whose website is at www.investinme.org.

Thank you for reading this. We must become more aware, in order to ease the plight of many thousands of sufferers and their families, in this country and around the world. This problem is not going to go away; new sufferers are coming online all the time, and although some people may go into spontaneous remission or enjoy some improvement, most go on to suffer for many years. It is no respecter of persons; you or one of your family members may be next.

Video about M.E.

Here's a video a friend has just told me about, which points up some of the problems we have to deal with as far as M.E. is concerned.



Of course, not all people with M.E. suffer the same symptoms that Bond Girl suffers from - the symptoms are many and varied, but several are shared by us all (the post-exertional malaise, overwhelming exhaustion, pain in varying degrees, sleep problems etc.).

After my busy day at the SW Disability Show yesterday I'm suffering payback today, and have spent most of the day resting, but that's OK - I'm not prepared to simply stop doing things I enjoy just because they make me worse! The secret is striking the right balance and not consistently overdoing things, which will have a serious knock-on effect - the occasional bit of rash enjoyment is always worth it!!

One day this disease (not a "syndrome") will be recognised for what it is by the medical profession and by health ministries and governments. Until then, we must continue the fight to spread correct information, to inform, and to educate. Please spread the word. We need you.

Views from Shoshi's Settee - M.E.

After all that busy, busy, busy, making cards recently, I'm totally exhausted today. I've been what my hubby calls "floppy" all day, and have hardly stirred from the settee. I didn't wake up until late this morning and didn't actually get up till around 11 a.m., and then slept again on the settee this afternoon for an hour or so.

This is the dreaded "payback" after a person with M.E. has overdone things. It's one of the cruellest aspects of this illness - it's very unpredictable, because the "post-exertional malaise" can be delayed up to several days after one has overdone things, or it can come almost immediately. You just never know... Also it's uncertain how long it will go on. With me it's usually over after a day or so (depending on how much and for how long I've overdone things) but with some people, even a minor amount of overdoing things can send them into a relapse that might put them in bed for a month.

I've felt very weak, had more muscle twitches than usual, and have felt utterly drained of any energy to the point when even lying down and breathing makes one feel tired. I've had a headache most of the day and my temperature regulation has been poor - rather like having flu but without the sneezing and runny nose. Although it hasn't been too bad today, I sometimes suffer from hyperacusis when I'm like this - the slightest sound is unpleasant and makes me jump out of my skin!

I'm hoping that I shall feel better tomorrow, because it's my dad's birthday and I want us to drive over and see him, and I've also got to do some food shopping. There's a whole heap of things waiting to be done as well, but I shall just have to get to those when I can.

One of the most important things I've learnt through having M.E. is that however bad I'm feeling physically, it's important to give thanks for all the good things in my life, and to keep cheerful and remember things could be a whole lot worse! I have so much to be thankful for, and it's rare for me not to be in good spirits, although I do let frustration get the better of me on occasion.

Fighting this disease is the worst thing you can do - it just makes everything much worse! The best thing to do is to go with the flow, listen to your body, rest when you need to, pace yourself when you're feeling better enough to do things, and accept your limitations. I know that I am unwell, disabled and need a lot of help, but I am still "me" even if it's "me with M.E." and the M.E. isn't what defines me as a person. It's part of my life, but not the most important part!

The most important part is the people and relationships in my life: God and my relationship with Him through Jesus, my wonderful hubby, my parents, my friends, including those I've met online, and also a sense of humour and a bubbly, up-beat personality, my creativity and appreciation of beauty in all its forms, our kitties, the beautiful place where we live, the fact that we have enough when so many people have so little, and bright hope for the future.

Views from Shoshi's Settee - M.E.

I haven't been able to do much on my blog for a day or so because I was totally exhausted after my birthday. I had major pay-back yesterday and lounged around on the settee all day in one of my new kaftans and my hubby had to do all the meals etc.

One of the major symptoms of this disease (M.E.) is "post-exertional malaise" - an exacerbation of some or all of one's symptoms and an overwhelming exhaustion, not while you are doing things, but delayed until the next day or even later. It can go on for any length of time; some people, after overdoing things even a little on one day, can be put in bed for a month as a result.

It is absolutely wrong for people to believe that we are "just a bit tired" all the time. I read somewhere that "fatigue is to M.E. what being a bit forgetful is to Alzheimer's." Unless one has experienced this degree of exhaustion it is hard to understand. I describe it as "having my plug pulled out" - just like when the plug is pulled out of the bath, and the water all runs away, so my energy drains away until there is nothing left.

For this reason, the current trend to rename this illness as "Chronic Fatigue Syndrome" shows a complete lack of understanding. A "syndrome" is merely a collection of symptoms, after all, so it does not describe a specific disease, and the name also emphasises "tiredness" to the exclusion of the many other and varied symptoms to which we are all prone. In my opinion, the term "CFS" trivialises this severe, chronic and extremely debilitating disease for the benefit only of those who wish to politicise the illness, re-brand it as psychological, and save themselves the money which we need in order to make ends meet because we are quite unable to work. Medical insurance payouts are considerably less for psychiatric illness than for organic disease.

With the ongoing research and the recent breakthrough in the discovery of the involvement of the XMRV Retrovirus in M.E. patients, let us hope that M.E. will soon achieve the status of "respectable" illness in the same way as M.S., which was once known as "the faker's disease." Meanwhile, we in the M.E. community continue to press for public money to be spent on real, biomedical research into this devastating illness, and the abandonment of the psychiatric paradigm.