At last the builders have gone off for their Easter break and all is quiet for a few hours until the children burst through the door for their Easter holidays.
The weather is being unreliable and in some parts quite ghastly but here in East Anglia we have been blessed with real Springtime conditions: blue, blue skies with fluffy colouds, daffodils bobbing their heads in light breeze and the lambs in the meadow down the road gambolling away around their Mums.
I love this time of year
I wish you all a lovely Easter break and, for those of you who are feeling especially poorly, I wish that the Spring weather, the new life, will uplift you sufficiently to get through another day.
Chris over at SickandTired has very kindly nominated me for a Happiness Award.
Thank you Chris. How very, very kind and cheering---- especially considering what a grumpy old cove I can be in RL ;O)
Nothing to do with having M.E. I'm just middle aged and grumpy sometimes.
Anyroadup, apparently the rules of the Award are so:
- When you have received this award you must thank the person that awarded you this in the new post.
- Name 10 things that make you happy.
- Pass this award onto other bloggers and inform the winners
So here goes:
1. Kissing my children goodnight on their lovely little heads. Even though they are now 15 and 11 they are still my babies to me...so I often have to sneak in after they are asleep and do it then
2.Talking daft to the dog in a language only he and I understand
3. Being anywhere by the sea: the sounds, sight and smell of the ocean
4. Watching french films from the 60s
5. Taking a good photograph
6. Making a lovely cake or a nice meal that everyone enjoys
7. Making a toy or clothes or anything for someone that makes them happy
I would have nominated Jo and LeeLee too but I believe thay are already standing on their podiums with awrad in hand and I'm not sure if yo can awrad someone twice. All these people deserve the awrad because they are resourceful, cheerful , supportive and contribute so much to the blogging community
Another long time no post. My apologies. It is a very busy time at Cusp Villas and there is so much to do .
For almost a year now we have been planning to either move house or extend our existing dwelling. This is mainly so that the house is easier in terms of access for our son.
In the end we decided to extend the house and the builders have moved in with avengence. This morning at 7.15 we had four builders, two electricians, three plumbers, a building inspector and our architect on site. I shall hereafter refer to Cusp Villa as The Site since that is what it now resembles --- a building site -----well it would because that it is what it is.
So far the builders have uprooted two very large bushes, a privet hedge, taken all the windows and doors form our utility, downstairs loo and boot room and as I write there is the merry clatter of pneumatic drill on concrete flat roof. All the ornaments on a shelf in one of the bedrooms have ended up on the floor from the vibrations.
Oh happy day !!!
The son is delighted at all the diggers, trucks etc. The daughter is slightly unnerved because she likes things to be in their place and nothing is at the moment. The partner and I are kind ofresolved and adopting a Churchillian bulldog spirit, stiff upper lips, gritted teeth, strong corsetry and gallons of strong tea. I imagine this is a bit like it felt in wartime circa 1940. Think we'll have Woolton Pie for supper tonight and powdered eggs for breakfast.
The dog is having what the french refer to as a 'crisedenerfs' --- kind of nervous collapse. He has been sick three times and cannot understand why everything has been moved including his bowls and bed. Poor old boy. I fear the RSPCA may be round to nab us for cruelty to elderly pooches.
Right time to sign off. I shall report when the sirens are silent and it's time to come out of the bunker.
It really is very naughty of me to post this so near to Mother's Day but it it really highlights the knife edge that a 'mother's love' can be. I love the animation.
I'm sure my mother would have seen the funny side, God bless her.
Today I learnt that Kate McGarrigle has died. She was one half of a duo: singing with her sister Anna. Together they wrote the most beautiful songs and, for me, they filled the mid and late 1970s with lyrics which were pure poetry. They spoke to me and filled my head with sweet and heart-rending images. Nowadays Kate is better known by the younger generation (if she is known at all) as the mother of Rufus and Martha Wainwright. For me Rufus is too affected, too ornate, too hysterical, too arch and too knowing. He is the opposite to his mother and aunt who seemed unaffected, genuine, sincere and humble.
Every time another of my heroes dies I feel the loss deeply.
Heroes have always been important to me. They shine a light on part of myself and influence the way I see the world, They inform and protect me by showing that there are other like-minded people: that I'm not alone, misguided, lost.....and now another is no longer with us.
Some say a heart is just like a wheel When you bend it, you can't mend it And my love for you is like a sinking ship And my heart is like that ship out in mid ocean
They say that death is a tragedy It comes once and it's over But my only wish is for that deep dark abyss 'Cause what's the use of living with no true lover
And it's only love, and it's only love That can wreck a human being and turn him inside out That can wreck a human being and turn him inside out
When harm is done no love can be won I know this happens frequently What I can't understand Oh please God hold my hand Is why it should have happened to me
And it's only love and it's only love And it's only love and it's only love Only love, only love
Only love, only love
This of course is one of the trials of getting older: the longer we stay, the more people we have to watch leaving and I'm reminded of my elderly grandmother who, at nearly 90, had lived too long. After another bad chest infection and another long spell in hospital she turned to my father and said 'All my friends have gone. There's nobody in the street who I used to know anymore. I've had enough. I'd like to go now'...and she did. I don't want to go yet but I could do without watching the others leave.
*There's a lovely piece here about Kate's death with tributes from her children and sister
'JoAnn always has a happy outlook...' and maybe we should try to be more like JoAnn..although there does seem to be a soupcon of mania on her face...or is it just an overdose of 1960s happy tabs ????
Valium anyone ? Nardil ? Purple Heart ? She's a bit like a white Winifred Attwell on speed. No ? (If you're under 45 you probably don't know who Wini is but you can always google)
Anyway, I hope you'll all have a happy and healthier 2010 and, who knows, by next January we may all be as full of vim as JoAnn, God bless her..and you
Usually I don't like Judy Garland. The voice is to shrill, the sentiment too overbearing and the fragility too real. The Rescuer in me feels I must stand by the speakers with a bucket to catch the tears, an arm to wrap round her shoulder and a soothing balm.
In the case of this song I feel differently. In many ways this is one of the very few Christmas songs I really like --- apart from some ancient and traditional carols. This song speaks of a reality to me: the bitter sweet nature of Christmas with all the fun and festivity against a backdrop of memories, good and bad, happy and sad; the people there and the people missing --- lost from our lives through bad judgement, lack of care, happenstance or death.
There's a terrible poignancy about this song for me and only Judy's version does it justice -- not because of her own pain per sebut because of that tremulous timbre and because of the pain and experience that informs it. I also love the images in the video. Judy never looked more like a painting --- a construct of some Director's dream and the artful attention of the studio make-up artists, lighting director and costume designer. The little girl is just the right side of mawkish for me. Now and then even I can do 'mawk'.
So here's wishing you, whoever you are, blogging chum or new arrival --- a Merry Little Christmas. For many of us I know it has been a year of struggle. Here's hoping that 2010 will be better brighter and full of good cheer.
Christmas has come early to Suffolk. We woke up this morning to find the village transformed into (cliche alert!) a Winter Wonderland. The childrens' schools were closed and so its been a day of snowman making, snow angels and cold, cold hands with intermittent forays indoors for hot drinks and hot food and hot water bottles.
Of course, as usual, U.K. is rubbish at organisation and foresight when it comes to such lovely weather. It's as if the powers-that-be forget each year that in the wintertime it sometimes SNOWS !! Last night saw broken down lorries and cars on 'A' roads hereabouts. There was no gritting beforehand. Some people were stranded on the Orwell Bridge (the River Orwell runs through Ipswich to the sea at Felixstowe and Harwich) from about 9 p.m. last night until they were freed at 6 a.m. this morning.
Still, it's everso Christmassey isn't it and it is the best kind of snow too: really lovely and soft and with a bit of sunshine in clear blue skies. More snow forecast for this evening and tomorrow too I think.
I really hate it when people who are suffering, ill or in need have to tout their stories round and almost beg in order to raise sufficient funds for treament or resources which might imporve their life. Only a few doors away we have a young man with Cerebal Palsy whose family must tout his story and arrange gigs in local pubs in order to try and raise funds for a special wheelchair which will improve his life no end.
Yesterday I was alerted to the story of a young woman who lives a few miles away from me and who is very severely affected by M.E. and bedbound. Jenny Rowbory became ill with ME in 2004 at the age of 18 when she contracted a virus during the first term of her course at University where she was studying medicine.
Recently she attended the Breakspear Hospital in Hemel Hempstead where a treatment programme was drawn up for her. The cost of the 12 week treatment plan is £35,000. NHS funding was applied for but rejected. Jenny has written a poetry book 'Rainbows in my Eyes' and is selling it to try and raise the funds needed to pay for her treatment. You can go to her website to read more about her story and buy the book. You can also donate additional funds.
Here's Dusty again. You'll be getting sick of her if you're not keen but I love her and always have. I'm putting this one up for my new blogging chum Ruth who liked the last video.
Today I'm looking after a recuperating son: small op. yesterday and third visit to hospital since last Friday. The patient is sitting up and taking notice and we are enjoying ;O) all the re-runs of 'Heartbeat' and 'On the Buses' and other daytime telly that I never usually watch. We are also enjoying plenty of Playstation. The boy is incredibly hungry (a good sign) so I am also on frequent snack duty and hot water bottle duty and all the other duties that are part of the convalescent's requirements. We are trying for recovery by Thursday so we can attend the School Carol Concert Dress Rehearsal.
I shall stop here because the bird in the nest has his beak open again and my laptop is playing up yet again --- on its last legs and driving me crazy with all its idiosyncrasies.
* BTW I am being plagued by all sorts of comments from strangers hither and yon offering me no end of strange medicaments for sexual prowess, money making schemes and no end of other stuff I do not want or care to know about. Does anyone know how to deter such miscreants and turn them away ?
Here I am again ! Cooeeeeee! Over here..the one with the slightly askew demeanour and slightly careworn appearance. That's what a 7 week school holiday break can do for you. Yes that is correct dear reader: I did say SEVEN weeks. Much as I love my children, seven weeks is a long time to fill and seems longer when you're not particularly chipper. There were ups and there were downs and at times it was a real struggle but I'm still here and ready for another day.
We made cakes, we decorated furniture, we went to fetes, we helped at fetes, we bought a lovely swing seat and we avoided, cursed and annihilated a lot of wasps (what good are they ?? ..hateful beasts). I managed to make it to two of the four wedding receptions to which we were invited and we had friends round for Sunday lunch.
I also cursed this wretched illness, cried and swore because I couldn't do many of the other things I longed to do with the children and never made it to the seaside which is only 15 miles away.
I did manage to get to the doctors to verify that I am not diabetic (though it is borderline), got my eyes tested and had a crown fall off whilst chewing a vitamin --- s*d's law ! These might seem small things to many people but they were on a list of things to do and at least I achieved them. You have to look at the positives.
And now we're back to the old routine with children at school, partner at work some days and me trying hard not to give into feelings of ill health and unsteadiness so that I can do the things that need doing and do some things which bring pleasure.
I've realised that since the relapse at the beginning of the year I have taken quite a downturn and lost confidence. Some of the feelings of ill health are in fact feelings of anxiety: fear of what will happen when I try to do something simple like going to buy a pint of milk at our local store (a five minute drive). These are not panic attacks but simple fear about what will happen based on other real incidents when I've felt genuinely faint or sick or giddy. I have to overcome these feelings or I shall sink further into the mire. I just can't do that.
My doctor is still pushing me to take the anti-depressants. I still hesitate. I have been trying everything I can to avoid taking them: will power, herbal stuff, EFT, positive affirmations, homeopathy. I am doing more and I am winning but it's a real struggle and I sense that I am weaker than I was before the relapse but I will not be beaten.
There have been other aspects of self-discovery but that will have to wait for another post.
For now I battle on and I'm trying to re-establish some kind of routine so I am more involved with the day-to-day e.g I had had to give up collecting my daughter from school but now I go however I feel. I'm hoping that gradually I shall get back to where I was a year ago. That wasn't exactly Olympian athlete standard (ha! ha! ) but I was more out in the world and less fearful of how I'd be from day to day because there was more constancy.
The past few months have been more of a roller coaster; having no idea how I'll be from day to day or even within a day. I have to admit that the uncertainty and extremes have got me down of late...and watching my partner and children being able to go off and do things I cannot this summer has really brought home to me how much I miss.
Maybe that was a good point about the Sertraline: that it 'took the edge off' as my GP said and I didn't realise the reality or severity of what was going on.
I do now.
Do I want to ? I don't know really but having now known it I cannot un-know it and even with Sertraline the knowledge will not evaporate.
I'm stuck and I'm sick of the struggle but I will come out of it....eventually.
In the meantime enjoy this lovely Gigliola Cinquetti song ' I Have Too Tender a Heart'. Sometimes it feels just like that
Not much time or energy to post in the summer holidays but I do have time to share some of my favourite songs.
I've loved this Steveie Wonder track for years. I used to have it on an old Stevie compilation album in the 70s and played it repeatedly.
I was reminded of this song because Stevie Wonder sang it at Michael Jackson's Memorial and even though I watched the whole 'circus' of Jackson's funeral with cycnicism, watching Stevie struggling to get through such a poignant song at what was, for him, a very emotional situation, brought a lump to my throat.
Time for a lighter post. Sad sentiments in the song but my oh my what a voice Gladys Knight has and what passion! I can never listen to this just once.
Why is it that there seem to be so few doctors who will a) look at the whole picture b) enable patients to try treatments other than those which they (the doctors) specifically agree with ?
These questions and others are the result of the first appointment I have had with my GP for eight months.
As I've said before he is a lovely chap: quiet, sensitive, (appears to be) listening, calm and friendly BUT he is not pro-active.
In all honesty I only went to see him because my Pensions Company have sent me the usual 6 monthly 'greeting card' asking how I'm getting on, will I return to work soon ? have I done any trampolining/ sky diving/ pot-holing ? do I intend to make a trip anytime soon to any part of Africa on a mercy mission for a charity and transporting myself there on a unicycle ? The answer to all the above is, of course, 'No.....I have not , cannot and its very unlikely I shall be involved in any such activities for the foreseeable future.' Still they have to ask and then when they have asked they double check that I'm not capable of work etc. etc. by asking my GP and asking him to complete another form --- which, if I ask ever so nicely, I can see before he sends it off....so I do because I want to know what's being said about me. Except that for the past 7 or 8 months I haven't bothered to see him because he's ineffectual and in the past 6 months I've felt like death so haven't been able to get to the surgery: all our conversations have been by phone. Every symptom I've had has been put down to M.E. or fatigue or anxiety.
Four days ago I finally went to see him and the form. I felt like death warmed up but I had to go no matter what (the form was going to be sent off the next day whatever happened). The form was fine(ish) ..he hates them as much as me and puts as little information as possible. The meeting was warm and friendly as usual but nothing ever shifts. We never move beyond the third place on the game's board. That's why I rarely see him. It's like a stale relationship where there's nothing left to say.
I went through the past 6 months -- so he knew what its really been like and can put it on the form --- and told him all the gory details. I asked him about the recommendations of Dr Myhill (B12 injections, more thyroid tests), the hypoglycemia ---which he insists is not hypoglycemia but fatigue and weakness --- the upset stomach and about all the talk about M.E. maybe being related to health of the gut and the place of probiotics.
Everything was met with a negative response: 'No', 'It's not been proven', 'etc. etc.. All I was offered was SSRIs (anti-depressants) - the same ones I weaned myself off last year. I was offered (and reluctanatly accepted) them eight years ago and I'm being offered them again now because they apparently help with IBS, sleep patterns, anxiety: so not especially because of any depression. Although it has to be said that after the past 6 months I've got a bloody right o be depressed ---well more pissed off really and angry and frustrated. Still the pills are his answer --- to everything.
'It's all we've got' he says.
It's all we've got. Is it ? What about all the other stuff I just mentioned that you've just dismissed ? What about taking a chance to see if any of them might make me a bit better. I can't access any of those treatments without a GP's agreement so I'm stuck ......and I'm sick of it.
The last six months have been a total wash out. I'm nearly as far back as I was eight years ago. Every day is a struggle and when I try to get out and about it's hell. Every trip, every journey is torture because moving and traveling is so hard for me. My memory is shot. My ability to talk for any length of time, to be creative (even if it's only bloody sock monkeys and fairy cakes) is gone and the blood sugar problems , orthostatic intolerance, fatigue, problems with sight and hearing continue and I'm sick of it. I'm even too unwell to get to my Reiki healer or to the osteopath. I've given up so much these past eight years and spent so much money on vitamins, herbs, consultations and I'm still stuck here ploughing on with no real medical support. It's all hit and miss.
Maybe the slow decline over the past nine months is down to lack of Sertraline. Maybe if I start taking them again it'll all come right (yeah right !!!) or maybe it's coincidence and I'll stay the same as I am until fate decides I should get a bit better and then I'll be on bloody anti-depressants as well.......but what other option do I have when there are no other doctors about who have a more adventurous approach. I've asked around about other GPs in the practice and other surgeries too and nobody knows of anyone better. So it's better the devil.......and I fell I should just roll over and take the tablets like a good patient. Maybe he's right
In the meantime there is talk that there is a specific probiotic which may be very helpful to people with M.E. (see links in last post) : only available in America but, as it's my birthday soon, I have decided to spend $77 on myself and have some shipped over in the hope that it may move things on a tad.
Fly in a glass jar Always looking at the world E'er at one remove
I decided not to bother with the test. As it turned out my computer went wrong and then the printer; meaning that first I couldn't receive the email with the order form and then when I could I couldn't print it off. Sometimes these things are meant to be.
In the meantime, other people had ordered, received and taken their tests and many had ordered two so that they could take one and give the other to their 'control' who was healthy. Often the results came out exactly the same e.g. the woman who is severely affected and her husband who is a mad-fit sportsman who can cycle 100 miles in a day. I thought 'I shan't bother' --- mind you that's becoming a running theme at the moment if I'm not careful: too many hills to climb.
On the bright side I've saved myself €15/£13. Also, there is still interesting research and talk about possible connections between M.E. (and other conditions) and the state of the intestinal flora. You might like to have a look at this and this if that's your bag.
I might try to get hold of the recommended probiotics and see if it helps: any port in a storm.
There's another whiff of (mild) excitement on the M.E. front for a Belgian doctor has developed a urine test for M.E./CFS. It's cheap (£15) and available from today.
Of course there's also much scepticism for we PWME'rs have heard all sorts before but, heh, the theory makes some sense and for £15 and a quick whizz I'll take a chance.
I've heard so much piss in the wind about this condition over 35 years that this can't be any worse and it's not painful.
If you want to know more there's a good article in today's Telegraph.
Another long time no post. My apologies. It is a very busy time at Cusp Villas and there is so much to do .
