Archive for March, 2009

Trip to Twycross Zoo

Growler took a day off work and we went to Twycross Zoo for the day. When they described themselves as a World Primate Centre I hadn’t quite been prepared for how many monkeys and apes there would be there.  But I did get to see penguins, a couple of lions, a couple of leopards, very very sweet meerkcats and prairie dogs, sealions and lots of other creatures.

elephants otters amur leopard prairie dog

 giraffes penguin from behind young meerkat meerkats meerkat family 

Many of the paths appear to have recently been covered in a fresh surface of gravel which made using the wheelchair quite trying.  The cafes weren’t brilliantly accessible (or serving much beyond chips and burgers).  But they were lots of places to picnic and always a good view of animals from a wheelchair as so much is designed with small children in mind.

penguin swimming : tail end penguin swimming : side on penguin swimming : from side penguin swimming : bottom 

penguin swimming : towards penguin swimming and reflections penguin swimming penguin swimming : half in half out 

I enjoyed my day out.  It’s been a long time since I went to a traditional zoo and I wasn’t totally comfortable with all of the enclosures.  There was also a distinct lack of decent manners from the majority of the other visitors! I don’t think we’ll be rushing back there.

But any day out with Growler is always a joy.  I also managed to take some photos and some video so you could visit some of the animals with me.



What If My Doctor Missed Something?

I caught up on Facebook with a blogger I had lost touch with.  She had been searching and pushing for a real diagnosis for a long time as Fibromyalgia and CFS didn’t fit with all her symptoms and test results.  Now she’s pretty sure she has Hypereosinophilic Syndrome.

pic by akay

eosinophil by akay

Hypereosinophilic Syndrome (HES) is a ‘rare’ blood disorder where the eosinophil (a type of white blood cell) counts are raised and it can effect people in different ways.  It can cause damage to multiple systems commonly heart, lung and neurological.

General symptoms can include (but a patient may not have all) fever, fatigue, cough, rash, diarrhea, neurological problems, nausea and vomiting, difficulty swallowing, shortness of breath, cough, cardiac symptoms and abdominal pain.

There’s a good youtube video with some real patients telling their stories.

It’s easy to see how you could be suffering with HES (considered a rare condition), and have a general practice doctor put it down to Chronic Fatigue Syndrome (CFS).

So it got me thinking.

It got me thinking about how hard this lady has worked to find a diagnosis. You could see that as desperation in a way, to not face a diagnosis of FMS or CFS, which has little in the way of treatment.  But although  HES can respond to treatments like prednisone it has no cure and the damage to your systems can lead to death.  So it’s not exactly a condition you would choose to have!

It got me thinking about the 4 or 5 people I’ve encountered online who have been diagnosed with CFS or FMS only to have been misdiagnosed when a different underlying condition has been discovered 1-10 years  (or more!) later.  Not to mention the number of people I have encountered casually online who have turned out to have other conditions.  

Their “real” diagnoses have included:

photo by Janneke Hikspoors

photo by Janneke Hikspoors

Maybe rare conditions are only rare because so many people get misdiagnosed with things like CFS?

So I do wonder from time to time – what if my doctor missed something?

I’ve only had the care of one doctor (who I call my Friendly GP) consistently since she diagnosed me with CFS in Jan 2007.  Before that, when blood tests were being run and I was describing my symptoms, I saw 4 or 5 different doctors in my practice.  I’d like to think that gave me multiple trained eyes on those test results but I’m actually left with a fragmented feeling about the whole diagnostic process. Especially those 4 or 5 GP’s were seen over the course of a year before Friendly GP finally suggested CFS to me.

This feeling sometimes manifests as a fear of discovering there is another cause to my symptoms than ME/CFS and what if there is (or was) a treatment?  Is it possible to have lost 3 years to debilitating symptoms that could have been treated and controlled?

There were abnormalities in my blood tests in 2005/6 – namely that my red blood cell count was consistently high.  At the time I was quite anxious about this but had the results dismissed fairly casually by a doctor as “high is probably just your normal”.  I got the impression they weren’t ridiculously high – although they were high enough to repeat the test 2 or 3 times over 6 months.

He is probably right.  But probably doesn’t seem quite good enough all of a sudden.  Not when so much is at stake.

I did a bit of reading and found articles about raised red blood cell counts that I didn’t find back in 2006.  Articles which suggest that a consistently raised red blood cell count should be investigated further to check for possible underlying causes.

photo by chatiryworld

photo by chatiryworld

These include tests I ‘ve never been given:

  • measurement of iron, folic acid and vitamin B12, which are all important in red cell production
  • oxygen levels in the blood
  • chest X-ray to check that the lungs and heart appear normal
  • ultrasound of the abdomen to check the kidneys, liver and for any increase in the size of the spleen or fibroids in the womb

There are simple explanations for high red  cell counts which include being overweight, high blood pressure,  dehydration, alcohol and stress.  But it can also  have other serious causes like kidney disease, tumours, endocrine abnormalities, liver disease, sleep apnoea, heart disease or a bone marrow disorder.

The medical name is  Polycythemia.

I’m not saying I have any of these serious causes and maybe the doctors I saw were aware of further diagnostic criteria which meant they could be ruled out just by looking at me.  I don’t even know if I still have a high red cell count as I’ve not had a routine blood test since.

What I am saying is I’m not sure whether these possible causes of raised red cell count were considered at all at the time.  Plus questioning the decision that this was my normal and not to continue to monitor it when you factor in all my ME/CFS symptoms.

A high red cell count can actually result in a lack of oxygen being carried around the body.  That could account for all of my symptoms if blood flow and oxygen levels are reduced to my brain and other systems.  This extract relates to polycythemia caused by bone marrow disorder:

The excess number of cells in the bloodstream lowers the amount of liquid in your blood vessels. This makes the blood more viscous (thicker), so it flows less easily, especially through smaller blood vessels.

Many symptoms of polycythemia vera relate to the increased viscosity. Common complaints include headache, dizziness, noises in the ear, blurred vision and fatigue. In most cases, the spleen is enlarged because of the increased number of cells being recycled there.

More from this article

I am not self diagnosing.  I’m just wondering if  I should have been referred for further investigative tests or at least  further monitoring.

photo by Leo Reynolds

photo by Leo Reynolds

So I wonder, could I still have high red cell count and lack of blood oxygen to vital systems which manifests  as neurological problems, headaches, fatigue and digetive problems?  Or is it M.E. that causes the problem with my blood oxygen and my body tries to compensate by creating more red blood cells? Or is the red blood cell thing just normal and not a factor? Or another of a myriad of possible explanations?

It’s a bit chicken and egg.

I think about Ashy with her POTS – does POTS cause the ME symptoms, is POTS a symptom of ME or does she have POTSand ME together?  And RachelM with her asthma symptoms, breathing problems and OI – do they cause some of the ME symptoms or are they a result of the ME? 

I hope research can provide answers and do so fast enough to help us all.

I think it may be time to ask my friendly GP to re-run my blood tests.  Question is if I ask her to look particularly at some rare conditions to rule them out will she welcome my internet research or see me as one of those “difficult” CFS patients with too much time to surf the net?  Only one way to know I suppose.

Can I afford to risk missing a diagnosis for the sake of upsetting my doctor?

pic by Ethan Hein

pic by Ethan Hein

But then if all my symptoms were just the result of too many red blood cells wouldn’t they have spotted that?  It does seem too simple an explanation to be realistic.  

I’m not grasping at straws here.  Because I’m not offered any tests to confirm ME it’s not unreasonable to want to feel confident that diagnostic criteria which can be ruled out are done and that my doctor looks at all possibilities.

As my own GP said “it’s important to have faith in the diagnosis” otherwise it’s very difficult to live with it.

No Place Like Home

My 24 hours at home alone went well.  I survived ok with minimal disruption or undue exertion – thanks to planning ahead, resting in anticipation, lots of strategic pre-planned support from Growler and pacing through the alone time.

The only flaw was forgetting that Flyman, our cat, would want feeding in the morning.  I should have planned to relocate downstairs from first thing to maximum efforts, instead of going downstairs and up again.  It just meant I was in bed a little longer than I have been for a few weeks but no major disruption as Growler was home by lunch.

Also Flyman was very well behaved and only came up the bed to ask for food once I had started to stir.  It was suggested on Twitter that perhaps he was respecting Mother’s Day (here in the UK) by letting me have a lie in.  I was certainly pleased not to have a paw stuck in my face at 6am or awake to find I’m being stared at  like he does to Growler regularly.

So a success.  I was grateful (and lucky) to have had a reasonable 2 days of health and energy relatively symptom free aside from some fatigue and aching.  No migraines or terrible tum to contend with.

My biggest achievement I think was succeeding in allowing Growler to leave me home alone without worrying constantly about me.

Home Alone For The First Time

It’s an extraordinary day.  I’m going to be home alone for 24 hours (overnight) for the first time in over 4 years.

Certainly the first time since I got ill with ME.

For one day I am responsible for looking after myself.  Well, that is, aside from all the strategic pre-planned care from Growler including meals to heat up with crocks at the ready in the kitchen.  He is amazing.

There’s 7 hours of international rugby union on the TV to pacify me. Growler is off to Wales to watch his national team live inthe stadium for the tournament champions decider. Lucky him 🙂

So I need to go slow and steady to pace myself through the day.  I’m feeling OK about it all.  I just have to not get over-excited about having the place to myself and do anything silly, or at least anything silly that can wait!

Not NICE For ME

Unfortunately the legal challenge over the UK NICE Clinical Guidelines for ME/CFS has been ruled in favour of NICE.

http://www.meassociation.org.uk/content/view/814/161/

I am deeply profoundly saddened by the news.

I suspect it’s a victory for NICE based on technicalities and legal smoke and mirrors.

If they they indeed did follow their own procedures rigidly to produce these guidelines, which are unfit for purpose, it just proves that their processes are flawed. 

That they can disregard medical expertise and biomedical research, but be so swayed by a small but powerful number of CBT and pyschiatric focused lobby is an absolute disgrace.

These guidelines offer 2 “treatments” which are management or coping strategies at best.  They seriously undermine GP and Consultants ability to work with patients to find the best management and treatments for their needs.  They muzzle their ability to explore ME/CFS and to treat patients with drugs and therapies that can be useful.  These guidelines at best needlessly restrict the quality of life of ME/CFS patients can expect and at worst push them into “treatments” that will worsen their health to alarming levels.

It sends the wrong signal to doctors, patients, media and every ordinary person (some of whom will one day be diagnosed with this illness and face the same obstacles as us).  And this signal will travel around the world.

I can only cling to hope.

You might be interested in:

Even Action for ME who support the NICE Guidelines have voiced concerns about the treatment recommendations and the NICE response to the judgement

The Ducks Came To Me

I love ducks.  More so since I’ve been ill with ME.  A lot of the places we visit in my wheelcahir to get some air and expand my world seem to have water and ducks.

Ducks make me smile and usually giggle.  They just go about their lives undisturbed by me.  They are duck through and through.  I watch them waddle about on land and I suppose I feel a kindred spirit.  Me in my wheelchair and them a duck out of water 🙂

Since Growler started his full time job back in October I’m not getting out as much as I used to.  When he was self employed we could take an hour or two out of the day to go a wheelie walk and be flexible enough to do it at short notice when I had a day I felt well enough to try.

This morning I got my duck fix without having to leave my bedroom.  Because they came to me.  Growler handed me my camera and opened the bedroom curtains to reveal a family of 3 ducks splashing about in our garden pond.

20090313 garden pond ducks 001

20090313 garden pond ducks 006

They had a clean and a quack chat as they were led around the garden by Mrs Duck.  It looked very much like a house viewing as they explored the various corners of the garden and chatted in quiet quacks.

20090313 garden pond ducks 008

Eventually they got spooked, I expect by a cat, and they flew up towards the house and over the roof in formation quacking loudly as they went.

I hope they liked the place enough to come again.

20090313 garden pond ducks 009

Bright In Small Doses

Photo by pilipala9

Photo by pilipala9

On Tuesday evening I attended a small meet up of local folks who use Twitter.  There were 9 of us in all, most meeting each other for the first time.

It was good to be and doing something different and I enjoyed myself very much.  I hope to meet up with them (and probably more new people) again in the future.

Deciding whether to attend or not was really difficult.  When you have ME it’s not always just a case of deciding if you want to and if you have the time.  Desire and time are things I have plenty of – it’s the ability to exert myself without making myself ill that’s the problem.

I was out with Growler for a few hours.  First we had a meal out (lovely!) and then onto the pub to meet the others for just under an hour and a half.  I felt myself zoning out after an hour and was starting to fade so we left ahead of almost everyone else.

I do worry how people see me in terms of representing an illness that stays hidden at home a lot of the time.  I find myself buoyed up with nervous anticipation and enjoying meeting interesting people. 

Enthusiasm carries me along well – but I do falter when people ask me direct questions.  It takes me notable extra seconds to literally search my memory banks for an answer & consider how/if to mediate a response especially if illness is a factor in the answer. Do they want to hear the details, or broad brushstrokes of how being ill effects how long it takes me to paint a canvas, or do I give a broader answer without highlighting illness?  When he asked “is it tough?” did he mean painting in general, or painting with my illness, or my life as a whole?

As I get to know people better I can often guage such things better and so not take as long to do the mental gymnastics.  But it does make me sad that they get to know me as the person whose mind goes blank and ummms a lot.  They meet the Rachel who isn’t very sharp and don’t know that I’m not as sharp as I used to be because they only know me now. 

Vacant

Vacant by RachelCreative

Then after an hour I am fading and looking blank as even the muscles for my smile are numb.  I’m too tired to observe if anyone has sensed a change or just thinks I am always like that (vacant, rude, gormless – I don’t  know what they think). 

If they do see the change is it possible they recognise it’s the illness?  Or is the concept so alien it doesn’t factor?  I can (just about) remember being healthy and I took people as they came.  Take me at face value without factoring that ME is silently dulling me and I may not come across as the caring intelligent person I really am on the inside.

It leads me to another question – am I denying the part of me that is me with ME?  After me dulled with ME in a social situation IS a part of who I am now.  If I am vacant and absent and forgetful in public then in a way that is showing a true part of myself.

I start the evening well and bright because I manage my condition as carefully as I can.  I manage it so that I am able to be there in the first place.  If the exertion and stimulation melt my brain and body into submission then is that not just another aspect of me?  I am not just the bright woman I am at rest on my own sofa without physical interaction?

That’s a bitter pill to swallow.  I’m pretty sure Growler will say “never make assumptions”.  That I notice the dulled down, vacant me much more than anyone else.  Maybe.

In one sense I’d like those lovely people I met to understand that a few hours out one evening takes much more than that out of my week. 

I curbed a lot of activity the day before and the day of the meet in order to be as well as I could be on the night.  I got home and my brain was buzzing with the evenings conversation and characters like electricity pulsing through my mind.  It took a good hour for me to calm my mind enough to settle down to sleep.  Meanwhile my body was crushingly exhausted.  The next morning I  woke early still with my mind buzzing having not had enough sleep and feeling hungover from the dose of amitriptyline I had to take late the night before because I was wanting to be able to chat and not be totally spaced out before I even got to the pub.

That day after the meet all I managed to do was use my computer and watch TV.  My mind and body were slow.  The next day and I feel the same.  The plans I had for this week have had to be postponed until I have recovered some more from the outing.  I’m not bedridden, but I am slow and ill so need to avoid adding any further malaise to what I already have.  I was supposed to have a Growler assisted bath last night but it was too much for me.  No bath, no art, no cleaning and a dulled mind with forgetfulness (more than usual), a misbehaving tummy (which was much better until this), being on the cusp of my headache threshold – all for a few hours out one evening.

But I also know that this knowledge could leave those folks feeling awful.  Asking someone to do something for an hour that will leave them feeling ill and unable to even wash for a couple of days seems unfair.  They end up feeling uncomfortable knowing the cost or saying “if you’re tired/ill you don’t have to come you know” not understanding that I’m always tired/ill.

I want them to understand but I don’t want to burden anyone with something they can do little about.  Is it fair to share the suffering?  I suppose the one thing that can be offered is understanding.  Share in the knowledge, the reality and understand what effect things have on people with ME without feeling the need to find a fix or a cure. Yes to understand, or want to understand.

Photo by Tomas Hawk

Photo by Tomas Hawk

For me it’s positive to be out and connecting with people about anything except illness.  As someone who is mainly housebound and incapacitatedin many ways it’s difficult not to feel like an outsider.  Common experience is limited.  Even talking to people who live in the same city as me I can’t share much because all I see is my own house and not the outside world.  But it does give me a way to connect to that outside world and some of the people in it.

I am happy to celebrate that I am able to go and have one good hour.  I can remember a time when that would not have been possible and holding a conversation longer than a few minutes felt impossible, let alone with a bunch of strangers in a noisy pub.  So I’m thankful of what I do have but with an eye on what’s still left to gain.


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Push It 11 Sep 2011

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CFS Links & Resources

See my entire list of CFS/ME/CFIDS links to sites, articles and resources via del.io.us
http://del.icio.us/rachelcreative/M.E.
New stuff is added all the time.