Archive for January, 2008

DLA Success!

I have been awarded Disability Living Allowance!  I am so happy!

They have given me Lower Rate Mobility and Middle Rate Care allowance.  Plus they have awarded it for 2 years.  Great news.

I am certain this is down to a strong application with lots of additional information, seven supporting letters/statements from family and friends and a great GP who I suspect wrote a spot on report for the DLA decision makers.

I wholeheartedly recommend subscribing to www.benefitsandwork.co.uk to anyone considering applying for DLA.  They also provide advice on Incapacity benefit claims.  Their advice guide is just brilliant – it’s easy to follow, it decodes the ridiculously complex DLA form and it tells you step by step how to give the strongest application you can.  They also left me in no doubt that I qualify and that I should apply.

As well as owing a huge than you to the family and friends who wrote supporting letters and stood by me through this process, and a huge thank you to my GP – I know none of it would have been possible without Growler’s help.  He did all the hard work – extracting from me what I wanted to say, filling in the gaps in my thinking/memory and writing up the 50 plus pages of questions and additional information sheets.

I am so relieved not to have had to have a doctors visit/medical.  The letter says my application, further information and GP’s statement was enough for them to make an award.  I have even received the back dated payments already!  Plus it took them just 2 months from me posting the form for them to make the decision – not too bad by government standards!

Now I just have to decide how to use the money.  Especially as I wasn’t really expecting to get it.  Perhaps a gardener, or a cleaner, or part time P.A. to do errands and little tasks … or to save it towards something bigger … an electric wheelchair, a go slow holiday, an electric bicycle … or practical things like taxi’s to get more independent, supporting my huge vitamin habit, investing in more pyjamas, buying a shower seat … or to invest it for bleak rainy days …

Hmmm. A nice problem to have.  Wonderful in fact.  It IS possible to have CFS and qualify for DLA.

General Practioners Who Don’t Like Practising General Medicine

This is going to be part rant, part question, part ramble about why doctors bother to practice general medicine if they can’t be bothered with common complaints. 

It just seems so pointless and utterly sad that a doctor practice in a job where coughs and colds and sore throats are common place, if they have no interest in treating those patients.

Or that a doctor practice general medicine when they have no interest in patients with chronic conditions when chronic conditions affect so many of the general population.

I am reminded of Elizabeth‘s battle in Canada to find a doctor who will treat a chronic condition.  Every doctor she tries for help only wants healthy patients.  That is just crazy!

Plus I am reading “Encounters with the Invisible” by Dorothy Wall (ISBN 0870745042) where she discusses how many doctors have lost the art of listening to their patients.  Modern medicine is so focused on tests and such like that they listen to the science and the body more than the patient.  That the majority fail to really hear what the patient describes to them about their condition and that is their described symptoms do not match the test results they dismiss them.  Why is it, she asks, that doctors who are faced with a patient who suffers symptoms which do not fit with current diagnostics do not want to investigate, to try and solve this mystery of medicine – why is their curiosity dulled?

I also read an article this week asking why doctors are so fearful of prescribing pain medication long term to patients suffering chronic pain.  Saying that those with chronic debilitating pain should have pain relief and suppression not “management” which so often means learning to “not focus on the pain”.  She suggests that if doctors are so reluctant to improve the quality of these patients lives by giving pain relief and so fed up with paperwork perhaps they should pursue a career in pathology or some other kind of medicine.  Just leave patients to see the doctors who actually want to heal and where they can’t heal help their patients.

All of which has me thinking that some doctors are just stuck in a job, like millions of other people – lost in a routine that isn’t their calling, doesn’t push their buttons, isn’t a good fit.  The difference is that whilst they linger in jobs they don’t excel at – patients suffer.

Having had this cold with sinus and throat infection for three weeks now and having had a profusion of green snot followed by a discovery of white lumps on my tonsils I finally went to the doctors yesterday.

Continue reading ‘General Practioners Who Don’t Like Practising General Medicine’

Dull January

My christmas cold lingers and is wiping all traces of energy from me.  My brain isn’t too bad but everything seems dulled.  I have mental lists of things I could do, want to do, need to do – but no reserves at all with which to try.

My limited activities have been limited yet further – even the basics have been cut down.  My spirits are fairly good, but prone to exasperation and frustation although even those feelings are dulled.

The virus is mainly in my sinuses and throat – dulling my hearing, grating on my throat, pressing on my face and sometimes with a spiking headache.  Like my CFS although in this case much more rapid, the virus symptoms are cycling.  Yesterday my voice and throat were much better, my sinus clearer but my cough going strong.  Today I wake to no voice at all, restored now to at best a gravelly rumble – my throat is irritated, raw and dry, my sinuses dry and clogged, my hearing dulled once more.

I’m wishing Growler was fit and healthy but he too has the virus which does make for a useful comparison of my progress.  I’m able to not be too despairing seeing how long it’s taking him to get over the virus and how wiped out he is.  But of course this doesn’t help with feeling jolly about life – watching a poorly exhausted Growler tend to my needs when all he wants is to flop and rest.

So … it’s a time of trying to maintain a balance and perspective – to stop the bottom lip from trembling and reminding myself that things are OK.  But managing to be or do or exist much outside of the body with it’s symptoms and irritants and annoyances is difficult right now.

Happy on the inside though.

New Year Flop

I’m having something of a new year, post christmas flop.  I can’t assess if it’s the christmas exertions (however carefully planned this year) or just the cold and sinus infection I have picked up but I’m distinctly floppy.  My meager level of activity has been reduced yet further whilst my desire to plan and get stuck in to projects is strong with the start of a brand new year.

New projects and new plans will have to wait. Indeed I must take the floppiness and delaying of plans as part of the 2008 master plan.  There is no fine detail planning to be done when you have CFS/ME – because even if you reach better health a set back is never far away.

I’m not saying this in a negative sense – no matter how it sounds.  There is no point planning my life ahead on the basis of regaining the health I once had – because no-one can say if that will happen and it’s commonly believed to be unlikely.  Even recovery must have one eye on the possibility of major relapse.

2008 for me is going to be about further phases of acceptance for the life that is now mine. 

If I make a startling recovery to health then I am prepared to have to make some major adjustments to embrace good health.  I’d be delighted to do that and I maintain hope that it will happen. 

However, without a proven treatment or strategy to get me there it seems continuing trial and error to regain health is the only path for me.  Meanwhile I can embrace a life within my limits.

There’s no new discoveries here.  Just a reflection that since my formal diagnosis 12 months ago my condition has changed only slightly and faced with that reality I would rather be living for the present than for a vague possibility of the future.  This actually means I think, a lot more of the same.  Working toward the same goals, seeking the same rewards in life, using the same attitude and approach – just accepting this isn’t a temporary state but something more semi-permanent.

I don’t have anything very new or profound to say.  It’s just another chapter of life within limitations to be savoured to the maximum possible without detriment to myself or others.  To be clinical yet spirited.  To be constrained yet free. 


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