Archive for October, 2007

Doing, Juggling and Head Spin

I feel like I should be doing something.

What I actually need to do is to rest (and rest and rest) to conserve energy and recharge that faulty battery of mine so I can have a Wednesday and Thursday of doing. 

Wednesday and Thursday will be spent in Derby with dentists, meeting friends, a work farewell lunch and an overnight stay.  Plus no doubt a burning desire to take like a zillion photos.

Maybe I have peaked too early in my mental preparations.  Maybe I want to be doing to escape the head spin I am in over shopping and credit card.  I have purchases I want to make, purchases that need to be done NOW to qualify for special offer, a big refund pending with no news of when it might come, a need to ensure I am going to be here to take the deliveries and a stupid crappy credit card limit that makes purchasing everything I want right now impossible.  Argh!  It also took me 3 days to decide on the clothing I wanted to order and now I have a cold sweat about spending money on clothes – and where I’m going to put them.

Sigh.  This has always felt complicated but even more so these days.  I went through a spend first think later phase in my twenties which got me into a lot of trouble.  So now I like to try and hoard my money and make it stretch.  But CFS gets me muddled – I know I am getting bargains because I spent days and days pouring over things.

I’m rambling I know I am.  Sorry folks.  I can’t relax until this stuff is sorted and I can’t sort it until … erm … later?  Who knows.  Maybe I am more nervous about my work end that I thought.

I think I’m going to have to ask Growler to give me some simplifying logic to all this 😉

PS: Later … Growler to the rescue.  Shopping expenditure underwritten 😉


Nearly Unemployed

My workplace and I have reached a mutual agreement to terminate my contract due to ill health.  So from the 1st November 2007 I am to be my own woman.

I think joining the union (if you’re not already a member) when you fall ill with CFS/ME is a very wise thing to do.  If you can keep working but need some reasonable adjustments (under Disability Discrimination Act) then they can help support you with that.  If you are unable to continue working then they can help with any problems that may arise between you and your employer.  And ultimately they can help extract you from your contract in the most agreeable way possible.

When I first got ill and took a long absence (a few months) away from work my main aim was to get better and get back to work.  Resume normal life.

I was determined I would not be someone whose life was wrecked by this illness.  I would keep on working.  I had plans once I was back to full hours to negotiate some changes in my work situation – doing one or two days a week from home for instance.

My Occupational Health advisor and I agreed a back to work plan where I would start by doing 4 hours a day.  After two weeks it would rise to 5 hours a day.  Then 6 hours a day and so forth until I was back to full hours.  The timescale for this was about 6 weeks.  I had wanted to start with 3 hours a day and build the hours more gradually – but the strong message from Occ Health was if I couldn’t do 4 hours a day then I wasn’t fit for my job anymore.

So I agreed the plan.  It was (predictably) too much, too quickly.  With my line managers agreement I stretched the return to work schedule.  I upped my hours in fortnightly blocks instead of weekly.  I also worked 2 of my 4 days a week from home.  This meant I could stop in bed and work.  I was protected from stress quite effectively and the work I was given was manageable and realistic.

I started my back to work plan in mid October 2006 and planned to be back to “normal” in the January.

Problem was – although I was teeth gritted, postive attitude, gutsy and determined to get myself back to normal I wasn’t noticing the glaring truths about my situation.  When I did got into the office I was having my husband or brother give me a lift – because I was too tired to drive myself.  When I got back from the office I was totally exhausted, unable to do anything and often needing to collapse/sleep.  I was struggling – but determined.

By the time I was up to 6 hours a day the signs were not good.  At 7 hours a day I felt wrecked, useless, weak, pathetic and a failure.  My husband was the one who put the brakes on – quite literally.  Dressed and in the car en route to the office he pulled into a side street and told me he didn’t think I should go in.  I cried.  He took me to the doctors and we all agreed I was utterly exhausted and very ill.  It was mid December 2006.

I thought that being signed off for a week plus the Christmas break would be enough to get me back on my feet.  My doctor gave me a leaflet about CFS and told me (very gently) if anything looked familar to come back and talk some more.

The reality of what I was facing sank in over the festive season.  This wasn’t glandular fever.  This wasn’t going to take a little while to be back to full speed like another GP had cheerfully suggested.  This was serious.

I paid a big price for that continued strain of battling to stay at work.  A price for increasing exertion week by week even though I was getting weaker and weaker.  For the inevitable increase in workload, responsibility, deadlines and stress as my hours increased and it seemed enough time had passed for me to be able to start coping with it (what average person wouldn’t make such an assumption after all).

I was more ill than ever before. My summer of suffering was a breeze compared to my January 2007.  I rested and made some huge adjustments in my lifestyle and after a month things were a little less acute.  But truth is another 9 months on and my health has improved very little.

So the terminating of my contract is the obvious thing to do.  There’s no-one who can estimate when I will be fit for that kind of work again or even if I will ever be fit.  Besides the job was ultimately too stressful to be practical for me with CFS.  Even if I felt a hundred times better and started a phased return the nature of the work and the environment would be potential triggers for relapse. 

I wish that last summer I had seen a doctor who was up front about my prognosis.  If I knew what feeling tired and taking a year to recover had really meant I am sure I would have approached things differently.  I thought it might take a year to get back to 100% and I expected 6 months of that to be that last little 10%.  it was in fact quite a different scenario.  I wasn’t pushing myself hard, but I was pushing- when in fact I needed to listen to my body a lot more and push a lot less.  I first felt exhausted and had clear blood tests back in late 2005.  It took another year for someone to diagnose me.  Inbetween, not knowing what I was dealing with, thinking that CFS label was for other people not me, I in fact became progressively more and more ill.  I wasn’t able to do the right things because no-one was honest about the problem.  I was in the dark and getting deeper into debility.

You can’t change the past.  A million different things might have made a difference – or done nothing at all to alter the course I was on.

So, here I am nearly unemployed.  But I no longer see that as a failure.  I am, after all, ill.  That chapter of my life is closing and a new one is beginning.  I know work in the future will have to have a different feel and be better suited to MY needs and who I am.

I can’t promise I am always going to feel so positive and relaxed about it.  But I’m ready to make the transition.

ME/CFS Clinical Guidelines Skewed?

So remember my saying that new clincial guidelines here in the UK were a mixed blessing?

That whilst they make some progress the recommended treatments of GET (Graded Exercise Therapy) and CBT (Cognitive Behavourial Therapy) are management therapies not treatments?  And that these therapies can be harmful to CFS patients? 

That studies have shown that GET can make sufferers worse and whilst CBT can be helpful in learning to deal with a chronic illness it is not a treatment for the physical disorder and not considered a first line treatment in other physical chronic conditions.

Ok well I might not have said all of that exactly LIKE that but …

A group called The One Click Group is planning to take legal action over the NICE guidelines for CFS/ME.  They say that the NICE group was skewed towards the psychological CFS lobby and that medical evidence and research was disregarded.  That NICE have acted unethically.

They also say that stating GET and CBT as primary treatments for CFS despite research which says it is potentially harmful – is a violation of patients human rights. 

It’s a big claim – but you know it makes sense when you think about it. 

CFS is a dumping ground for misdiagnosis.  We’re perpetually told there is no single test for CFS/ME and no distinguishing markers other than a lack of any other physical illness.  But it’s not actually true.  You can run tests to establish common abnormalities.  You can also run tests to rule out other disorders. 

My GP had to be very insistent with the lab in order to get my test for Lymes Disease processed. It’s not a usual test – they say.  Which makes me wonder how many people in my area with CFS have never had the test done.  I digress.

The rally call comes from One Click Group to support the court action and not just let an inbalanced set of guidelines stand unchallenged.  These guidelines which have a real impact on our treatment and health, and which send the wrong signals out to all agencies and to other countries.  One Click are asking for cash to help with the legal costs – at this point a commitment to a donation.  If they don’t raise the full amount they will not proceed.  And all donations will be anonymous. 

There’s lots more info on the One Click site site.  It makes interesting reading (but they could do with some succinct summaries for the foggier among us).

A small donation doesn’t seem much to try and get these guidelines reviewed.  If they’re right and we’re wrong then let it be proven so. 

There’s too much going on out there that has not been listened to in preparing this document.  If they don’t have effective treatments then say so – don’t pass off inadequate therapies as proper treatments.

And it’s not just a UK issue – you can bet where an easy answer that generates big bucks for some people is accepted here, it will be used as leverage in other countries too.

Exercise and physological therapies for physical illnesses under a blanket diagnosis – coming your life soon?

New and Improved Recipe

I’m a new woman.  Well, I’m the same woman with a new haircut and with imminent freedom from the suits.  Well, I’ve had a haircut and am nearly jobless. 

Having not had a haircut since June 2006 because I haven’t been able to get to my hairdressers I finally had a big chop yesterday.  She took a lot off!  From wasit length scruffy hair to short-ish tussled look.  A totally new look! 

The challenge of a haircut isn’t just the getting there.  Things you take for granted when you’re healthy are suddenly major stumbling blocks with CFS.  I need to have wash in order to be clean enough for the stylist to come near me.  I need to physically get to the salon.  I need to be well enough to sit in a strange environment for an hour.  I need to be able to cope with a noisey environment, other people, potentially a chatty stylist, having to hold my head a certain way and still have the energy to pay and get home.  And I don’t know how people with Multiple Chemical Sensitivty get on!  There’s all those lotions and sprays and cosmetic perfumes in stuff.

Lucky for me there is a small salon just one minute from my front door.  It’s got high ceilings and is reasonably airey – and was quiet enough for me not to have total overload.  One stylist who was lively but sympathetic and not rushing but just taking her time.  No pressure.  She even (bless her) offered to give me a lift home.

I know it’s oh so sad to go on about a haircut but it’s a big deal for me!  It took me around three months from deciding to take action to actually get the phone number and ring for an appointment.  Up until then I hadn’t felt well enough to ring without losing all my words.

So thumbs up.  Local was a good decision for me.  And I feel a bit lighter and a bit springier – even if I am a bit wiped out today after my adventure!

In other news I am close, very close to an agreement with my work to ending my contract in a mutually agreeable way.  Hopefully more definite news soon once the union has approved everything.  Mixed feelings on this one – but I know ultimately that freedom will be a good thing.

Housework and Guilt

I’m not able to clean my house. Let’s face it I’m doing well most of the time to keep myself clean and even that is a constant struggle.

Growler does such a lot of the household tasks already. Cleaning has sort of always been my contribution in the past – as he does washing, cooking and all the stuff I found difficult anyway because of my back problem.  But I can’t clean now.  I haven’t got the energy or the stamina.

So the house has been getting progressively more and more grotty.  Growler hoovers regularly.  But things like dusting, mopping floors, cleaning the bathroom, cleaning windows … have all fallen behind.

It’s a difficult house to keep clean anyway – it’s old and the windows are drafty which combined with a lot of building works around our house (all year round it seems!) really doesn’t help.  Not to mention having a cat, old carpets, a slight damp problem and three adults knocking around the place.

I hatched a secret plan to clean just a little bit every day and quietly work my way through the house.  It hasn’t been working.  After a week of doing a little when I’m able in the bathroom – the stuff I cleaned at the beginning is already dirty again.   So I tried to do a bit more yesterday – just to clean one corner of the bathroom floor, just a square foot.  It ended with me sitting on the bathroom floor crying at the futility of it all.

It’s not just a pride thing, or a cosmetic thing – I am genuinely concerned about the health effects of living with dust and grot when I spend nearly every hour in this house.

I need help.  It’s the only answer.

So I asked my brother (our lodger) if he would clean the bathroom this week sometime.  And with Growlers encouragement wrote a list of chores that desperately need doing and pinned it on the fridge.

Today starts with Growler dusting and hoovering the lounge.  I can hear the hoover in the room below me and later he comes to check on me a little flushed and grinning with pride from his housework exploits.

Now I can hear the whoosh of water from the taps and the gentle knocking of the bathroom getting a good scrub at the hands of my brother. 

Through the wall I hear the efforts of cleaning as I sit in bed doing … nothing.  Nothing except wrestle with some guilt pangs.  First guilty that I am not able to keep my house clean.  Second guilty that I am not able to just get up and get on with such tasks.  Third guilty that I am subjecting other people to doing the cleaning.  All of which are silly I know.  There are things that need doing and people capable of doing them – so, that’s that.

So why do I feel so dirty?

Wheelie Walk: Beacon Park

Went for another wheelie walk on Friday.  That’s fresh air two weeks in a row!  Me in the wheelchair and Growler pushing.

20071012_beaconpark bark

We went to Beacon Park in Lichfield.  The paths are quite good for wheelchairs, although there’s some inclines to negotiate.  Disabled parking is a bit limited – but as I don’t have a blue badge it’s not a problem I suppose.  Oh – and it seemed the toilets were shut so it’s a good job home wasn’t far away!

There’s not as much to see as other places but it’s close by and in the week on a grey October day it was really quiet.  (There are formal gardens with a fountain and statues, tennis courts, pitch and putt, childrens play area, duck pond which has boats in the summer for children, large playing fields, an ice cream booth).

I like that there are plenty of benches so Growler can sit with me a while and watch the world go by.

20071012_beaconpark tree avenue 20071012_beaconpark autumn leaves

It was lovely to see the trees starting to turn autumnal and we even saw some silly dogs.  I love watching silly dogs!

Beacon Park also has a healthy duck population.  Ducks make me laugh.  I love how ducks are ducks not matter what.  They waddle about in their own duck way and quack and preen.  No matter what a duck is always a duck and they go on with their duck business. 

I aspire to be duck like 🙂

20071012_beaconpark autumn ducks

Don’t Mess With Sick Notes

 More stress for people who are too sick to go to work.  Proposals to let a ‘specialist’ team decided if you’re too ill to work and to do their best to get you back asap.  I don’t think the patients interests are at the heart of this idea – it’s about money.

“Professor Dame Carol Black, the Government’s national director of health and work, wants requests for sick notes, which currently go to GPs, instead to be scrutinised by teams of experts who would attempt to speed an employee’s return to work.

In a review due to be submitted to ministers in January, Dame Carol will propose the creation of “back to work” teams, based at GP practices, to which patients seeking sick notes would be referred.

The teams, staffed by physiotherapists, nurses, psychologists and employment advisers, would offer services that attempt to get patients back to work as soon as possible, instead of providing them with a sick note on demand.

Dame Carol said: “Too often doctors reach for a sick note when what is needed is some quick therapy, to agree adjustment to their working life, and to get them back to work.”

From The Telegraph “Get Tough on Sick Notes

Give us a break Dame Carol.  Life is tough enough without you putting the squeeze on too. 

There’s a petition for UK residents and ex-pats here


Push It 11 Sep 2011

for ME Research

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