Wot I dun on my 'oleedays

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

Keeping up

So what have I been up to since last we met, you ask ? Lazing in the sun, sipping juleps and Pimms ? No actually. I've been keeping up. In actual fact I have been keeping a secret from you because I have been part of a study made by the MUS (Medically Unexplained Symptoms) Dept. of my local hospital. I shouldn't really tell you more and certainly not show you some of the Report but as it is between us and some of the report is about me, well, .....why not.....just between friends

'Keeping up' is a distinct behavioural mode in the subculture of MEwhirled. This sub strata of Western society and culture is composed of a small and ill defined group of women, men and children who suffer with a condition whereby they can see a world (what we usually call 'normal life' or the 'primary world') moving in front of them and have a desperate desire to join in but who also feel that they are moving within a different time frame with a different set of rules. They feel that they are moving at a slower pace than the primary aworld and are unusually plagued with guilt, mood swings and a need to placate and please those in the primary world.

The behaviour known as 'keeping up' shows them enmeshed within a particular set of fine and gross motor movements which induce aches, muscle weakness and, occasionally a very nasty headache. They are, in effect, making feeble attempts to match the pace of those movements and tasks seen in the primary world (a futile exercise ). In doing so, they feel that they are being whirled round on an ever-faster carousel --- the primary world --- which rushes past as they try to keep up. This whirling effect has given rise to the aforementioned term 'MEWhirled'.

Such intense behaviour can lead to subjects exhibiting a certain irritability as their futile behaviour continues and frustrates them. Their large intestine and bowels may manifest this general irritable demeanour through constipation, diarrhoea, vomiting, flatulence and an intolerance to certain foods --especially the really nice foods such as bread, cakes, chocolate and alcohol.

In recent studies it has been shown that 'keeping up' is particularly common in people with ME who are parents and carers of young children. It also seems to reach a peak at particular times of year -- especially within the hottest summer months and the Xmas period. These two peaks may overlap and this has led experts to posit the theory that 'keeping up' is linked to full-time parental responsibility during school holidays. In particular, the full time responsibility is also linked to a phenomenon experienced by many parents in the general population. This phenomenon is called 'keepingthelittledearsamusedandoutoftroublewiththeminimumoffussandargumanets.'

So you see I have been 'keeping up' and rather than being smething I just do or feel I do it's all legit because now the local MUS Dept has made a study and written a report about it so it must be kosher.

It's not all bad. A lot of it as been enjoyable and fun, if a little tiring.

Since the beginning of last week we have taken part in:

• Sports Day


• Achievement Day: this was 'made' for me by my son playing the recorder for the first time and a little boy in Year 5 who looks a lot younger than his age. He just about managed to sing 'Whistle a Happy Tune' through floods of tears and snot induced by terror at the thougt of singing in front of an audience. 'Whenever gasp I feel sniff afraid, slllurrrrp, gag, snot, I keep my head erect, sniff sniff.... etc)


• End of term school (s) disco (s)


• End of term Youth Club disco


• Buying new sandals


• The local 'French Market'; a jolly and colourful experience but one which leads to a certain sense of disillusionment since many of the articles for sale are wildly overpriced, not french and are served by people who have never crossed La Manche from this side. Still it is tres amusant to see saucisson sec being flogged from a stall in Stowmarket High Street and to hear some of the real french stall holders with their lovely sing-song english. 'Mercimadame'
  
• Making a new skirt for daughter


• Helping son paint old bike and get new saddle so he can flog the old bike and get money for a NOW 70 CD from which he wishes to play Dizzee Rascal at full pelt on the car stereo
  
• Helping daughter make cake


• Going on train to nearest big town (only the second time in 7 years) and then sitting on station platform at nearest big town, spending exorbitant amount on National Express fare (all part of the experience --home made sarnies just don't 'do it'), and watching son drawing trains, taking photos of trains and noting down times of arrival and departure before returning to home town (15 minutes down the line)

• Village fete with dog show where our neighbours' dog won' Dog with the Biggest Grin'. We didn't take Tiffin as it was too hot and he's really struggling in the heat. I also bought 5 foxgloves and 3 heliotropes for £1.40

• Calling ambulance and helping elderly neighbour and who had fallen and broken his hip and whose wife was in real shock. Process took so long and happened at time of day when I would usually be asleep so that, at one point, I thought I might 'flake' and the ambulance would have to accommodate both of us ;0)

Now to you other mortals in the 'primary world', this little list mapping out some of the activites with which we have been involved over 9 days, might not seem a lot. It is just ordinary fodder for the parents of children on school hols .....but for PWME it takes a lot of juggling and patience and organisation and love to get through. It also takes the children a lot of patience, maturity and understanding to have a parent who cannot keep on going ad infinitum without having a 1-2 hour sleep in the middle of the day. My children are such children and I love them all the more for it.

So far we're doing OK and I'm trying my best to rest when I can and grab little bits of 'me time' --- like now.

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I wish all peoples with children who are on holiday a calm and pleasant few weeks.

May you never argue, lose your list of possible activities and outings (you have got such a list haven't you...Woman's Own has been recommending it since about 1959 I believe), run out of easy recipes for amusement or tea.

May you never be bothered by thunder flies which tickle and irritate and get inside next door's burglar alarm and set it off so that it alarms all and sundry and rings for what seems like eternity.

May you never lose your patience with CBBC's endless, endless, endless repeats of Tracey Beaker, Stupid, Best of Friends or Big Kids.

'It's too nice outside to be sitting in here watching that stuff. It isn't as if you haven't seen it a million times already. Go outside or go and find something more constructive to do please'

Can you tell I used to teach ?

I'd never 'keep up' now