A Major Health Setback

Warning – medical details, but some nice photos at the end!

After being discharged from hospital recently for the second time after the bleeding from my stoma, I was hoping to make a good recovery and start picking up the threads of my life again.

However, although the early days seemed to be going OK, I didn’t pick up as quickly as I’d hoped, and for several nights running, woke up soaked to the skin having had night sweats – something I’ve never suffered from before, even during the menopause. I mentioned it to the district nurse and she agreed that it could be a reaction to ongoing use of paracetamol and I tried cutting this down but it didn’t help. Later, several doctors and nurses said that paracetamol didn’t usually have this effect. (So much for Dr. Google…)

Towards the end of that week I was starting to feel worse and was off my food, until on the Sunday (15th April) I couldn’t bear the smell of it cooking. I kept feeling extremely cold and shivery and that night we took my temperature and it was around 38 degrees – I didn’t really trust our little thermometer and decided to ask the district nurse to take it again the next day when she came.

That night I started to feel quite poorly and my hubby phoned the out-of-hours doctor – why is it that I always get ill over weekends and bank holidays when nobody is around??!! – he was absolutely useless and was clearly going down through a printed checklist and wasn’t really listening to me. At the end I said, “What about my high temperature?” He said I’d probably got flu!!! I said I definitely hadn’t got flu because I’d had no throat or nose symptoms – he said you can get flu without those. I knew I hadn’t got flu! Anyway, if someone reports a temperature and has recently undergone surgery, you don’t think “flu.” He said to phone the GP surgery in the morning if I was still concerned.

In the morning I felt terrible and collapsed in the bathroom. My hubby happened to come in just at the right moment and helped me back to bed. We took my temperature again and it was still high.

Then the district nurse arrived and we asked her to check it and she was so concerned that she immediately phoned the GP surgery and a doctor came up within 20 minutes. He examined me and said he was calling an ambulance. I was apparently showing two markers for sepsis and this needed dealing with immediately. Apparently if we’d left this another 24 hours it could have been curtains for Shoshi…

Once we got to hospital we had a bit of a wait but at least I was able to be lying down. I was in a cubicle in A&E and various people came in and took details and examined me, and all the while I felt absolutely freezing cold and my hubby wrapped me up with extra blankets etc.

Eventually a bed was found for me and they said that my feeling cold was my body deceiving me – my temperature was in fact quite high – nearly 39 degrees – and if they didn’t bring it down I was likely to have a seizure. They therefore proceeded to take away all the blankets, saying that they were actually making things worse rather than better, and turned electric fans on me to cool me down! I spent the next two nights shivering uncontrollably and not sleeping at all, but my temperature did fall a bit, and over the next few days was up and down.

The first thing they did was to try and identify the source of the infection I evidently had – I had a chest X-ray and they tested my urine, both of which were OK. I had a CT scan that revealed some post-operative haematomas and this was believed to be the source.

I saw my surgeon and he said that haematomas can often cause night sweats, so that was the explanation for those. I continued to have them during those first few nights in hospital – one night having two – what a hassle having to change all the bedding etc.

I was put on my first cocktail of IV broad spectrum antibiotics and was given one unit of blood as my haemoglobin levels were falling alarmingly. They were supposed to give me two units but they said a side effect of blood transfusion can be to increase one’s temperature so they held off on the second one – this happened a few days later.

Once they had established the location of the haematomas, they inserted a drain on the left side of my abdomen, with ultrasound guidance under local anaesthetic. I was pretty nervous about this procedure but it wasn’t as bad as I thought it would be. This drain was a fairly fine tube and didn’t penetrate very deep; it was attached to a bag from which they took samples for culture, and at the top end it had a two-way tap to enable them to flush the drain daily. This drain wasn’t uncomfortable at all but limited my movement somewhat. It also had the effect of lowering my temperature quite rapidly as the infected fluid was draining away, but it was apparently not having completely the desired effect, so a couple of days later I had another CT scan that revealed more problems.

It’s hard to remember the exact sequence of events because I was feeling pretty lousy most of the time.

 

I do remember that my surgeon wasn’t on call for ward rounds for a few days and I was looked after by one of his colleagues, and he hummed and haa’ed about the infection being under the mesh, and query remove mesh? He wrote this on my notes. This gave me great cause for concern because this is a very serious matter and extremely difficult to deal with. When my own surgeon came back, he read this and said, “What’s all this about removing the mesh? We don’t need to do that!” He wrote in large letters in the margin, “Leave mesh alone!!” and signed it, putting my mind at rest straight away.

He said I needed a second drain, and as this one would be bigger and deeper, it would have to be put in under general anaesthetic. This was done, and afterwards I remained in severe pain until a couple of days after it was removed – it was very difficult to get out of bed and I managed to get onto the commode and that was it. This drain was connected to a vacuum bottle to assist the drainage of fluid, and with drains on both sides of my body, with a bag on the left side of the bed and a bottle on the right, my movement was even more restricted.

During the rest of my time in hospital, they tried me on two more cocktails of IV broad spectrum antibiotics because we were clearly dealing with what my mum would have described as “a very virile germ” haha! The final lot did seem to start working, and all through this time my temperature remained within normal limits, and my blood pressure (always on the low side) began to climb a bit so that the systolic pressure was up to three figures again – when it was down in the 80s they were quite concerned.

After a few days my surgeon decided I should have another CT scan to see how things were going, and said that the large drain on the RH side needed to be withdrawn by 2 cm in order to continue to drain more effectively. When the nurse tried to do this the pain went through the roof, before it had even moved a millimetre, and she said she wasn’t going to touch it any further without consultation.

They tried again, this time administering gas and air, but this had absolutely no effect except to make me feel slightly woozy. The pain was absolutely excruciating and I dreaded the moment when the wretched thing would have to come out altogether.

This drain was the first of the two to be removed. I told my surgeon that the gas and air had been useless and he said that because of the risks, it was not usual to remove drains under general anaesthetic, but he would give me some sort of sedative. I was given a Valium tablet which I had very little faith in, and again, all it did was make me feel slightly woozy – and less so than the gas and air. When they pulled out that drain I thought my last hour had come! It was about the worst pain I’d ever experienced.

By this time I was at a pretty low ebb, having been through so much, and all my reserves seemed to have gone, and everyone who did anything to me seemed to hurt me in one way or another! My poor hubby was so worried because I was at such a low ebb physically and emotionally, and it didn’t take much to reduce me to tears. Everyone has told me in the past how strong I am but on this occasion I definitely wasn’t, and felt completely at the end of my tether.

My surgeon said that that drain was very large and deep, and had penetrated through the same complex muscle layers to the right of the stoma (which is why the hernia operation had caused so much pain as well), and when a drain has been in for a few days, one’s body tends to develop tissue which “glues” it in place, which is why it is painful to remove. He said that after a day or two the pain should reduce, and it did. He said that the other drain was of a different sort – a much finer tube, less deep, and into simpler muscle layers. It came out a day or two later, and although it was pretty uncomfortable, it was nothing to compare with the removal of the deep one.

From the beginning I had problems with cannulae failing again. I had requested a PICC line from the outset before my hernia repair surgery but they were reluctant to do this and for once, the cannula they put in did stay the course. However, with this recent admission I was having endless problems, and having them dig around for a new site, causing me yet more pain and then for the wretched thing not to work from the outset, was becoming very wearing. They left the first one in for a couple of days longer than regulations required because it was still working and I was anxious about how a new one in a different vein would perform, but eventually they said it had to come out because of the risk of infection. Over the weekend I again requested a PICC line and they muttered on about risk of infection, and it not being necessary for short-term treatments, etc. until I was getting desperate. On the Monday my surgeon turned up again and I told him the trouble I’d been having, and immediately he said, “Let’s get the vascular access team straight down here and get a PICC line in right away, shall we?” He cuts through all the flim-flam with such authority but with such charm, and I always feel so safe in his hands! While I was in, I told him I’d already trusted him with my life three times, and he knew more about my insides than anybody but God, and I didn’t want anyone else messing about with me! He laughed! My hero.

I must share this funny photo with you. My hubby was endlessly amused by this chair – there was a stack of these chairs in the corridor for visitors. He pointed it out to quite a few other visitors and everyone had a good laugh!

Note the redundant apostrophe before the final “s” – this is something that always bugs me lol lol! We both thought that the writer’s spelling and grammar left a lot to be desired!!

After being in for 2 1/2 weeks they said I could be discharged. The infection was 90 percent plus dealt with, the drains had done their job, and the current course of antibiotics (now being taken orally) would do the rest. Because I’d had almost total bed rest during that period I was almost unable to walk, but could only shuffle very slowly with a walking frame. Because my hubby was so tired and so worried, and to give him a break, and also to allow me a transition period during which I could regain enough strength to be able to wash and dress independently and also to be more mobile, he fixed for me to spend a few days convalescing, and found me a room in the home where Mum had been.

This was rather a bizarre experience! I had had pretty negative vibes about the place because she had been so difficult, although I knew it was the best place and the care second to none. I knew a few of the staff and knew them to be efficient and caring. So off I went, last Friday, 4th May.

I didn’t sleep well throughout my time. On arrival there was a regular mattress which proved to be too hard after resting on it for half an hour, so they gave me an air mattress – I spent several hours sitting out of bed getting very tired indeed as they tried first one, and then a second, mattress – both of whose pumps were not working properly – they had been put away without being checked. In the end, I had to sleep the first night on the regular mattress, and they found a third air mattress the next day which did work, but the pump made such a loud buzzing noise that I had to continue to wear my earplugs as I’d done in hospital! Also, the room was small and the window couldn’t be opened very wide and I got very hot. I had come out of hospital in winter woollies and suddenly we were in the middle of a heat wave!

They cared for me so well. After that first night, a carer showered me and washed my hair – I was still very weak – and this gave me a tremendous boost, not having been able to do this for nearly 3 weeks!

The next day my mobility improved greatly, and I was able to walk, not shuffle, with the walking frame, up and down the corridor several times. The weather was glorious, and my hubby came over and we spent quite a bit of time over the few days I was there, sitting on the wonderful roof terrace they have, high up, overlooking the beautiful bay, and it was so hot that I began to catch the sun, and we had to go back nearer the building to sit under the umbrellas there.

The care home is part of a retirement village, which consists of the original beautiful Victorian manor house where I believe there is some accommodation, and where you can have meals; they have various functions there, and people who are not resident can join the club. My hubby belonged for a while during the time Mum was in the care home – he would often sit in the lounge with a book and a cup of coffee if his visit had been a difficult one. He got to know the staff there quite well.

Another part of the complex is a small building above the care home which is for convalescence, but since there were no available beds, I had a room in the main care home.

Below, there are some luxury apartments for people who are able to live independently. You can see the edge of this building on the left in the next photo, opposite the manor house.

Last year they had an open day and we were able to visit a couple of vacant apartments, and they were stunning – one or two-bedroom apartments with a small kitchen, bathroom and a lounge with a balcony looking straight over the sea.

Higher up, above the retirement village, is a block of luxury apartments, privately owned. In the foreground is the overflow convalescent home.

Looking back towards the care home from the roof terrace.

I think if the weather had been bad during my few days’ stay, I would have gone stir-crazy a lot sooner than I did – but sitting up in the sunshine and getting my first taste of fresh sea air and warm sun, and the sight of natural beauty after so long being confined in a place where everything you looked at was functional, was bliss. The views over the bay were stunning, and just what I needed!

On bank holiday Monday (2 days ago) my hubby took me out for a little drive and we went along the sea front, and enjoyed seeing all the holidaymakers in their summer clothes and the kids fishing in the rock pools with their little nets – some things never change – I remember loving this when I was a child! – and being so grateful for the glorious weather which would attract the holiday-makers and give a boost to the flagging economy of the town.

It was so lovely to get out and about, to be in the car, to see how much more green the trees were – just to look at something different and alive!

During my stay at the home, I got to know quite a few of the other residents (I was the youngest by far lol!!), most of whom were absolutely delightful and charming. I sat with the same people in the dining room and they were good company. The home has a weekly schedule of entertainments and activities, and on my first full day, you could go down to the manor house for a meal, and my hubby joined me for that. Half way through the meal my energy suddenly drained away and my hubby knew immediately that I had to go and rest, and said afterwards that it must have been serious if it prevented me from staying and enjoying some pudding!! He knows me too well… Yesterday was the day when residents could go out for a meal – this happens about once a fortnight. They have a mini-bus which can accommodate quite a number, including several wheelchairs, but my hubby drove me, and joined us. We had an excellent meal in a place near Dawlish, and when I came home, arrangements had been made for the continuation of my injections by the district nurse at home, and I was allowed to go.

Staying there opened my eyes to a few things. I was aware that there were social activities laid on, and how kind and efficient the staff were, but when Mum was there, she did not avail herself of any of this and preferred to spend her whole time in her room. I know that her deafness really isolated her, but having met the other residents, it saddened me that she didn’t make the effort to make any friends because they were all so lovely, and it was not surprising that she got so depressed, not taking advantage of all the lovely facilities in the home – there were several beautiful sitting rooms, one with a TV (she preferred to watch the TV in her room) and the beautiful sun lounge on the top floor giving access to the roof terrace. There were always jigsaws out, and lots of books and magazines. One of the things they provide is for someone to sit with residents in their rooms to keep them company on certain days each week, to prevent loneliness for those who perhaps are not well enough to leave their own rooms. Mum never took advantage of this, and then complained that nobody ever talked to her!

I am very glad I went, but oh so glad to get home yesterday afternoon – a few days was enough for me. My hubby had anticipated me being in for a week, but as I was so much better and he was looking so much more relaxed and less tired and strained, we decided to call it a day and get me home. Never has “Home, Sweet Home” meant more to me!

As for the kittens, when I first got home, they ran away from me, and when I attempted to get close to Ruby she was having none of it – I tried to cuddle her a couple of times but she squeaked and pulled away. Very disappointing when she had missed me so much during my absence but I thought maybe I smelt different! However, later in the evening I had two lovely long cuddles with her and she purred her little head off and got quite drowsy in my arms – this morning she’s again been a bit wary of me but things are definitely improving! My hubby says she’s a lot more settled since I got home, and isn’t looking for me and crying any more. I’ve never been away from home for so long and it must have been very worrying for her, wondering where I’d suddenly disappeared to for so long. I have missed them so much and last night I told my hubby how glad I was to be home, back with my little family! Life will soon return to normal, I am sure.

Meanwhile, he is doing the meals, which he was doing anyway in my absence, and having had that few days of convalescence, he doesn’t need to help me with any personal care. He is coming and going, and not worrying about leaving me on my own – all visitors (including the district nurse) have been told to let themselves in round the back to save me from having to get up to answer the door! Oh, it’s so good to be home!!!

WOYWW 436 A Tidy Studio and Some Zentangles

At last I have tidied my studio! As always happens when I haven’t been using it, it had turned into a dumping ground and was an absolute mess.

This is the further side of the room.

On the left, by the lamp, is my little gallery area. In the corner is my sewing zone with my sewing machine, and the storage boxes on the shelves contain mostly textile stuff. On the right is my drawing zone.

This is the side of the room looking back towards the window.

On the left is my iMac. My cutting machine is across the corner. Misc. supplies in the storage boxes on the shelves. I’ve got all my distress inks and Infusions and Dylusions sprays and paints out (in the plastic boxes on top) so it’s not over-tidy at present! To the right is my main work area – my desk, for the purposes of WOYWW! The white unit in the foreground is one of several pull-out units. When stowed away, this one would go under the main desk but it never goes in there because that’s where I mostly sit. When pulled out, it provides an extra surface and still gives me access to the shelves – this one holds card and paper.

Here’s the desk itself.

Apart from being a bit tidier than before, not much change – you can still see the current work in progress – my Infusions mini-album.

I continue to alternate between being busy with various commitments, domestic tasks and looking after the kittens, and crashing out on the recliner suffering from extreme exhaustion! I am taking a bit of a dip with my ME at the moment which is a tremendous bore because it’s preventing me from getting much creative stuff done – this is always what gets pushed to the bottom of the heap when energy is in short supply! I am trying not to overdo things on better days – I run on adrenaline on busy days and then pay for it later. My internal clock has gone all haywire again so I’m not getting to bed till well into the small hours, and then struggle to get up in the mornings – normal ME fare!

Zentangle

I was getting so fed up with not being creative that I charged up my Apple Pencil and started drawing Zentangles on the iPad again. I can do this from the comfort of the recliner or in bed, and I can also flip back and forth to look at the step-outs for the various patterns, either in my own folder on the iPad, or online. I can also listen to audio books while I’m doing it! Multi-tasking…

Here’s my experiment with Diva Dance flowing through Paradox – I’ve always found the latter pattern problematic but think I’ve mastered it at last! Full details here.

Yesterday I completed another one, which had taken me several days to do. Full details here.

Kittens

Lily and Ruby are now 4 1/2 months old – I can’t believe how quickly the time is going, or how big they are getting! As my hubby says, they may be growing, but they are not growing up! Here they are in the kitty bed, suckling on the fluffy toy.

They won’t use the lovely new kitten bed I bought for them, and they are now getting too big for it! I got the old bigger bed out for them and they wouldn’t use that either, until my hubby put the fluffy thing in there, and now they go in to suckle, but sleep either on top of the wooden cat tree my hubby made, or in the kitty castle.

Lily pending…

(In my hubby’s pending tray in his office!)

Together on the scratching post, looking like two little meerkats on a train.

They are getting on quite well with the clicker training but both tend to have off days when they won’t concentrate! Also, when I try and put what they have learnt into practice in a situation where there are distractions that they find far more interesting, they behave as if they’ve never heard of clicker training! We persevere, though.

A couple of weeks ago they discovered what fun you can have for a minute or two with a new roll of loo paper.

The latest video of them, wrestling on the scratching post.

Health update

I got the result of my recent CT scan this week and the hernia has definitely returned. The emergency repair done in February when I was admitted for emergency surgery because of a blockage, has not even lasted a year. I knew it would fail eventually. I am seeing my surgeon again soon, according to his letter, and we will discuss options then. I really hope he agrees to admit me for elective surgery for a proper repair, and doesn’t wait for another blockage…

Completion of Florabunda Alphabet

Last night I finally completed the Florabunda alphabet I’ve been working on, with the letters K to Z, so I can now make personalised cards for all my friends, even those whose names begin with X lol!

Here is the complete set.

Health Update

At long last I am starting to feel better! The final chemo just over three weeks ago certainly made its presence felt and the effects went on well into week 3 of the cycle, which was unusual because with previous treatments, by week 3 I was always feeling a lot better. It was doubly surprising that it went on so long, because the final treatment, like the penultimate one, was at a reduced dose. I am still getting peripheral neuropathy, mostly in my feet now, which is strange because I’ve had more trouble with it in my hands previously – it seems to be there a lot of the time, giving me feelings of numbness and pins and needles, particularly in my toes, and it seems unrelated to cold, too. I shall mention this to the oncologist when I next see her.

I have now started to pick up the threads of my life again, doing some domestic tasks. It may sound funny, but I am so enjoying this! It is making me feel a lot more human again, and in control of my life. My hubby has been so wonderful looking after me all this time but I really feel it’s high time I took back a lot of what he’s been doing, and started looking after him again after so many months.

Here are the “firsts” in getting my life back again!

Thursday: I did my first batch of laundry. Since going into hospital, my lovely cleaning lady has been doing this for me, apart from the odd bit of hand washing that I’ve managed to keep up with.

Friday: First lot of ironing.

Saturday: I got up and got my own breakfast for the first time. Since my operation, my hubby has been bringing me breakfast in bed. First washing up – I did the breakfast things! A gentle introduction. I also finished the ironing. I sorted the larder cupboards in the kitchen and made a list of what we’ve got, and what we need. I started making my first shopping list for the online order I shall be doing in the coming week.

Sunday: I went to church for the first time since May, when I had recovered sufficiently from my operation, just before I started my chemo. I was quite overwhelmed by the lovely welcome I received – everybody was surprised and delighted to see me back and I got a LOT of hugs! Everyone said how well I was looking. I would have easily forgiven them for forgetting me altogether, it’s been so long since I showed my face in the place! I washed up the evening meal dishes. Soon I will be cooking the evening meal, too!

Monday (today): I sorted the freezer and defrosted it. Much as I hate having to throw food away, I did have to throw away a bit, because it was too old. Once I’m back in the driving seat as far as the cooking and shopping are concerned, I shall have a proper idea of what we’ve got, and what needs eating first, etc. etc. and this won’t happen again. I have also re-started my diet – I am on the 5:2 diet, where you restrict your diet to a maximum of 500 cals for two days of the week and eat normally for the other five. I had to abandon this, on the advice of my surgeon, in advance of my operation, in order to keep my strength up and allow my body to recover. Although I have gained some weight during this time, I have managed to keep it on a more or less even keel, which I am pleased about, but now it is time to resume the downward trend and hopefully to reach my target weight by next summer.

During the coming week, I’ve got the fridge to sort and clean out, and the small freezer (part of the fridge-freezer in the kitchen). I also need to clean the hob and possibly the oven but I may ask my cleaning lady to do the latter lol!! There’s a box of food out on the counter where my hubby has been putting his food shopping for easy access for his cooking, and this needs sorting and the stuff putting away, and then I can clean that counter, including all the crumbs from the toaster! Tomorrow morning I shall finalise my online shopping list and then do the order in the afternoon, and request the delivery for Wednesday, as I used to do before. I am hoping to cook the first evening meal on Wednesday.

I am also trying to be good, and going to bed earlier than I am used to, so that I can get up earlier. The trouble is, my M.E. messes with my internal clock, and I tend to be mentally alert in the small hours, and do not feel at all ready to go up at midnight! I am trying to go up to bed at 12.20 a.m. at the latest. Since I have been doing this, I have not been sleeping well (waking frequently) which is what always happens if I go up before I feel ready, but this time I am determined to try and educate my body and put up with the wakefulness until it settles down into a new routine.

This whole cancer journey has brought me to a new start in my life, and I am determined to set up good habits from now on. I seem to be at my best for doing things in the mornings, so I am putting my feet up in the afternoons and evenings and not overdoing things. I have been needing a sleep in the afternoons but this may not last forever as I gradually recover my strength.

I am also hoping to be able to start spending some quality time in the studio doing art and being creative! Initially a lot of my energy will be taken up just getting things straight in the house again, but once this settles down and I’m properly into a routine, I am looking forward to spending time up there, probably mostly in the mornings, depending on how my energy levels pick up.

Some More Florabunda Alphabet Letters

Yesterday I drew some more Florabunda alphabet letters, and have now done F to J. I noticed that the first few looked a bit sparse compared with later ones, so I added some more flowers to the backgrounds and re-scanned them, so they are now more of a piece.

Only 16 more to do and the alphabet will be complete! Here’s how it looks so far.

These will be nice to use on personalised cards, and now that they are scanned in, I can make them whatever size I want. I can also colour them if I want, but so far I quite like them in black and white.

Yesterday I made a leaflet which I want to show to the organisers of the cancer information centre at the hospital when I next visit. I am hoping they will allow me to run an informal group of say half a dozen people, so that I can teach them the basics of the Zentangle method of drawing. I do not profess to be a teacher and am not a Certified Zentangle Teacher (CZT) but in a small way, I think I could share what I know, and get people started on what is a most relaxing and fulfilling activity, which is very de-stressing, and could really help people to deal with their cancer/chemo a little better. I do hope they will agree to let me do this!

If they give me the go-ahead, I can adapt this leaflet and make it into a poster, with their contact number and details on it.

Health Update

I am now well into my second week of my final chemo cycle, and have been feeling pretty terrible for the past two or three days. This happened last time too, on the reduced dose – I thought I was getting away with it because I felt so good in week 1 compared with other cycles, and then it hit me big time in week 2! This time, it’s worse, and I’ve had symptoms I haven’t had since earlier on in my treatment – I felt a bit nauseous this morning but fortunately that passed before lunch because I took my pre-lunch anti-sickness meds. Also, the peripheral neuropathy was quite troublesome this morning, and again my hands seemed to seize up, but these symptoms are transitory, thank goodness. I suppose that I should expect this, because even with the reduced dose, the effects are cumulative. I’ve felt extremely wiped out again, not helped by the fact that for the past few nights I have slept very badly, and I had a sleep this afternoon. I’ve felt very weak and wobbly, and my balance is much worse than usual so I am having to be careful moving around the house. I am using my trolley rather than my crutches and that does help.

I know that this will pass, and that by the end of this week I should be feeling a lot better again! Knowing that feeling better is no longer a prelude to being cast down to the bottom again by another treatment is having a huge psychological benefit, and I can put up with anything in the knowledge that this is temporary, and that I am now at the beginning of the road back to being my “normal” self again!

More Purple Goodies, and a Bad Day

Edited – some photos replaced!

As I wrote on my Cancer Diary page, I have had a bad day today, possibly because I’ve done too much this week. I had a headache all day and felt queasy. I spent a couple of hours in the studio this a.m. and managed to make a bar of lavender soap for our neighbour, and find some bath melts I’d made before (also lavender) and made some labels for them.

I recently got these Tim Holtz Sizzix “Labels” set of dies:

and I cut two from some of the paper that I’d sprayed with Dylusions inks and backed onto card.

I inked both front and back with a combination of Seedless Preserves, Dusty Concord and Chipped Sapphire distress inks, using an Inkylicious Ink Duster for the former two, and my home made blending tool for the Chipped Sapphire as before. It was at this point that my camera started playing up, and the rest of the photos were seriously out of focus! It does this every now and then, and because I was feeling distinctly below par, I didn’t notice until it was too late. (Ed.: Photos from here to end now replaced.)

I hand-wrote the front of the labels using a dark blue Marvy le Plume pen, and stamped the reverse with one of my Stampin’ Up “Butterfly Potpourri” butterfly stamps, using Chipped Sapphire distress ink.

I’m afraid I forgot to photograph the lavender soap that I made, while it was still in the mould. I coloured it with a single drop each of red and blue colouring, hoping to make a pale purple, but because there was only sufficient clear soap for a single bar, it came out quite a bit darker than I’d hoped. I thought I had some purple colouring but I did not. I also sprinkled on some lavender flowers before the soap set.

I found some lavender bath melts that I’d made in the soap making class last year, and also wrapped those up. I used clear cellophane and some silvery-lilac coloured gift ribbon, and tied the labels on with some fancy purple yarn.

Here is the growing collection of gifts.

Not sure what else I am going to do, apart from the lavender sachet to go in the box, and some stalks of fresh lavender flowers to go in, and of course, the little basket to put everything in.

I am hoping to feel considerably better tomorrow. Apart from this brief time in the studio, I have slept most of today, and cannot seem to shift the headache, and I have eaten very little.

Health Update

I had an appointment with my GP (family doctor) this morning, following on from my recent hospital appointment – I have been having problems with my mouth and throat. I suffer from a dry mouth especially at night, and this is probably partly due to my M.E. and partly due to nasal congestion – I have to spend some time every night clearing my nasal passages with Sterimar (an aerosol saline solution). Also, I had a throat infection back in February and since then I have not been able to throw off a chronic irritating cough, the production of mucus and a constant feeling of a lump of catarrh at the back of my throat which I am unable to clear.

My hubby has been telling me lately that I am making a lot of noise while asleep – not exactly snoring but a sound as if I am struggling to get enough breath.

I mentioned the lump in my throat to the hospital doctor but she couldn’t find anything and only recommended continuing with the saline spray to clear my nose and prevent mouth breathing, which should help the dry mouth. She ruled out Sjorgren’s Syndrome.

The GP was very helpful, and agreed it didn’t sound like obstructive sleep apnoea which my hubby suffers from – she asked if he could hear me stopping breathing altogether when asleep, which he couldn’t, and I don’t suffer from the same daytime sleepiness which featured so strongly in his condition before he started with the CPAP breathing mask.

She asked if I suffered from acid reflux, and when I said yes – I get bouts of this and according to my GP where we used to live, this is probably caused by my M.E. and is the result of the sphincter at the top of my stomach not closing properly. The GP today said all my symptoms were characteristic of reflux – the acid contents of the stomach can cause inflammation and irritation at the top of the oesophagus and give rise to a feeling of swelling and a chronic cough. She has prescribed Omeprazole, a slow-release medication which reduces the acid concentration in the stomach, for the next four weeks, and we have to see how it goes. If it works properly, it should prevent the reflux and give my throat a chance to recover. If the symptoms persist, she will refer me to an ear, nose and throat specialist who will take a proper look at my throat, and take it from there, with any treatment based on what they find.

I also mentioned my swollen ankles, and she confirmed what my old GP said, that I should keep my legs elevated as much as possible, but obviously I can’t be on the recliner all day as there are other things to do when I’m well enough! She said that my lack of mobility is the main cause, because walking exercises the calf muscles and keeps the blood flowing, and without it, blood plasma can leak out from the blood vessels and pool in the tissues, causing the oedema and discomfort. She said that it was most unlikely that my left bundle branch block (chronic heart condition) would have any effect – since being less mobile this condition has been completely asymptomatic and I tend to forget all about it. She said being female was against me, and also the heat – both of which exacerbate problems with swollen ankles. She said support stockings might help but I said they would be terribly hot – I wore my travel socks when we drove up to our holiday venue, which helped, but I did get very hot! She was reluctant to put me on diuretics because they would make me pee more, and could cause more M.E.-type symptoms, and would not be good for long-term use in my case. She ordered a blood test for anaemia, which is common in people with ulcerative colitis because of continuous low-level loss of blood, and which can cause ankle oedema. I asked about those circulation booster machines, and she said it certainly might help, and would do no harm. Looking them up on the Internet, they are pretty expensive, so I am now watching one on Ebay and hope the price doesn’t rise too high!

So now I am waiting for the result of the haemoglobin test, and for the end of the four-week period on the new medication, and we will see what happens. I am very pleased with our new doctors’ surgery – my new GP is extremely efficient, really listens, is friendly, and takes all these various niggles seriously. Untreated, reflux can increase one’s risk of developing throat cancer so it should not be ignored. I am happy that I can hope to feel a lot better soon, because something is being done about it.

Today I weighed myself for the first time for ages and was absolutely horrified! I have never been so heavy. I knew I’d put on a lot recently, and going on holiday and having lots of meals out, and starting each day with a full English breakfast and delicious home made scones probably hasn’t helped, but it’s given me the impetus to try and do something about it, so starting tomorrow, I am going on the Fast Diet (intermittent 5:2 fast where two days per week you consume a maximum of 500 calories, and eat normally the rest of the time) – I know several people on this diet and the results have been dramatic. Losing some weight should improve my health all round, I think.

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.