Being Believed Continues

I saw my Lovely GP this week after my medication got flagged for review, meaning it’s been a year since I last saw her.  Nothing much has changed in the last year, in fact in the last 2 years.

Seeing my Lovely GP, who is supportive about ME/CFS, usually leaves me feeling re-assured but a bit depressed because there’s nothing much she can do to help.  She prescribes to help control symptoms where she can, she offers referrals if I want them but doesn’t press anything on me.  But I leave with a sense that there’s nothing much anyone can do to help no matter how much they want to.

I read something on the internet about how many GP’s now go through the motions with Chronic Fatigue Syndrome patients.  They say the right things because the guidelines say they have to treat it as a physical illness. but privately they think their patients are just crazy or malingerers.  The advice being don’t let the patient know this because it only fuels the fantasy they are ill.

That’s pretty awful stuff to wrestle with.  Because even if my GP makes the right noises how do I know they are really invested in my care?

Well I plucked up the courage to ask my Lovely GP this time around if she had heard of  LDN (which is for another post) and if she would ever be willing to prescribe “off licence”.  She said she hadn’t (but could I give her any information) and they don’t usually do that (very sorry and all that).

I tell her a quick summary about LDN, give her a piece of paper with some urls on it and she flicks through one of her books with medications it in.  She says she will certainly take a look at the info and she will present a case to the lady in charge of deciding these things and see what she says – although she wasn’t too hopeful it would be a yes she was promising to try and get an answer quickly for me.

Exciting! My Lovely GP is willing to try even though some doctors would now be writing “difficult patient” on my file.

So, I ask, if the answer is no to prescribing it off licence would she have any objection if I were to seek a prescription for it from a specialist GP or private doctor. No problem whatsoever, absolutely, go for it.  Anything I think might help she is for me trying.

We reviewed my exisiting meds and I’m going to try upping my amitriptyline to 30mg as I’m needing more pain killers and migraine meds recently.

I told her we were in the process of re-applying for DLA (Disability Living Allowance)and could I drop a copy of our form in again for when she needs to write her report to them. Behind you 100% she says. Anything I can do to help with that she says.

OK, so while I’m here … my early blood test results have been bugging me.  Because my red cell count was high consistently but I was told it was “my normal”. Could anything have been missed?  She looks at the results and says very apologetically that’s it’s very moderate and there’s nothing really there of clinical interest. Sorry.

I’m getting answers!  I’m not getting diagnosed with something treatable but I’m getting answers.

So as I’m about to leave Growler asks if I’m want to mention XMRV.  What’s that then she asks.  She hasn’t seen the news. So I give her a quick summary about the research findings.  And she gets excited. A retrovirus?  How interesting, let me write this down. 

This is another reason for asking about LDN, because it sort of strengthens the case – it being effective with HIV (another retrovirus).  Except she says this at the same time as me.

Wouldn’t it be wonderful, she says, if it were found to be the cause?

Any doubts I ever had about whether my GP really believes in ME/CFS, or whether she just humours me, were set aside during this ten minute appointment.

I saw her willingness to help, but her being bound by the rules.  I saw her interest raised with news of a medication she hadn’t heard about and with research with significant findings.  I saw her keen to go read more and find if there was a way to help her patient, to help me.

I also had a few more hints that she has personal experience of ME in her close family – which goes a long way to explaining why she’s supportive, open minded and just a little frustrated with ME/CFS.

Having no doubts about her belief in my illness and her belief in the challenges it presents to me day in and day out, means a great deal to me.  Also I now know I need never be afraid to print out an article of interest into new research or treatment to share with her.  She’s not going to give me a black mark as a difficult patient.

Her support has given me a blue badge to use disabled parking, a Disability Living Allowance, medication for symptom control, re-assurance, knowledge, a diagnosis (which no-one else would give me) and hope.

I once read that the best gift you can ever give to someone is to believe in them.

I thought it just meant to believe in their potential, but I’m learning it reaches much further than that.  And it is indeed a wonderful gift to receive.

On Being Believed

So this XMRV retrovirus, the possibility of having a tangible test that shows a significant physiological finding, got me thinking about what it means to be believed.

My family, my friends. my husband, my GP – they all believe I am very ill with ME/CFS and that is a physical condition.  But with nothing to point at it to say this is what it is, everything feels a bit woolly and mysterious.

I find myself from time to time with the doubts, fears and questions of what this all means.  What is it that’s exactly wrong with me and more importantly how can I get better? 

Recently I’ve read a few people with ME who say they too get those moments where they start to wonder if they are imagining it all. Can they really be this ill, for this long?

When I was 24 I became very ill with depression.  I had the beginning of what I would consider a sort of breakdown.  I was crippled by fear, confusion and a sense of hopelessness.  I was in a very low, very bad place.  I was lucky enough (and brave enough) to attend 9 counselling sessions through my employer at the time and struck gold with a counsellor who made a significant impact on my life. 

One of the simplest things she offered was that she believed me.

My GP at the time had been dismissive, saying I couldn’t be depressed and conduct myself in the sensible manner I did at his appointments.  He reluctanly prescribed ant-depressants once he knew I was getting counselling.  He was, in short, an ass and compounded many of the root causes of the depression.

But my counsellor had no doubts about the state of my mental health. Let me get to the point.

I remember saying to my counsellor, through a haze of confusion and pain, that sometimes I wondered if was really depressed or if I was just making it all up.  Pretending somehow.  Because sometimes it didn’t feel like it was really me.

She told me that of course I was going to feel that way sometimes.  Because it’s far easier to think we don’t really feel that way than to have to accept that we do.  It’s easier to live with the lie that we’re ok than to face up to the problem.

It makes sense to me.  And it translates to chronic health problems too.

By the way,  the depression is long since gone.  It took more years to pass and more support from a GP, a counsellor and a psychologist to set me free.  But with their belief in my illness, their support in it’s treatment and my own faith in myself I did beat the depression.  Back to being believed …

At around 27 years old, a year on from my recovery from depression, I had started to get fit again.  I walked a lot and I was going to the gym a couple of times a week. 

I started getting a funny pain in my left leg.  I stretched more.  I exercised more.  The pain got worse and it was there every minute of every day. 

Eventually I saw my GP about my funny leg pain that wouldn’t go away.  He told me he thought it might be a problem with my back, which seemed a bit weird to me, but he would refer to a specialist for some tests.

The pain got worse.  It started to wear me down. And the pain kept getting worse.

Before I saw the hospital I needed to move house.  I’d moved quite a few times in the proceeding years and always got stuck in.  My dad and brother came to help.  The room I lodged in was up two flights of stairs.  By the second or third trip up and downstairs carrying boxes I was feeling exhausted.

I remember my dad was pretty appalled by my apparent lack of fitness.  I needed to sort myself out. 

I didn’t know what was wrong with me but I knew something was wrong.  I’d had a driving lesson where I was in so much pain and so locked up I couldn’t change gear.  I would press the peddle and shout the gear to the instructor who would shift the lever for me.

Was I making this up?  How could a funny pain in my leg stop me from changing gear in a car or carrying boxes up and down stairs? Could it all be psychological somehow?  What the hell was wrong with me?

At the hospital they knew straight away that the funny leg pain was sciatica.  They even knew where the damage was in my spine just from where the pain was located in my leg. 

When she showed me my x-ray there was no longer any doubt.

The lower discs in my spine were (are) crushed.  The bottom disc was (is) seriously squashed.  Kind of like the width of a coin compared to the healthy discs higher up which were more like a finger width.  This was damage acquired over years and years.  It was permanent and it was irreversible.  I was 28 years old. 

The specialists assistant said “there aren’t many people your age in as much pain as you are right now”.

Suddenly the months of struggling were all real, all honest, all explained. 

I knew that in fact I had been performing well beyond what could have been expected of me.  When I think back now to the pain I was in then I would not have been going to work, let alone doing half the things I had been.  In fact I’m not sure how I managed, living alone, having to do everything for myself with that amount of pain.

When I told my parents about the diagnosis, about the lifestyle changes the phsyiotherapist had told me I must make (permanently) to save my spine, it felt like it changed everything. 

I hadn’t been making this up.  The pain had been much worse than I had let on.  The constant never ending pain had indeed been taking it’s toll.  Now I had an x-ray that showed all of this was real.

It took a long time to adapt.  But once family, friends, colleagues and even me had something concrete to know this thing was real and why it was happening, I knew that they could believe in the pain.  They could believe in why I had to say no to doing certain things and why I had to make certain changes in my lifestyle.  And I could believe in it too.  There was no doubt, no hiding, no denial.

So XMRV, ME/CFS and belief?

XMRV could be the key.  Not just the key to perhaps what causes ME/CFS, or is a contributory factor in ME/CFS.  But the key to belief in ME/CFS as physical illness.  A simple blood test to show a significant abnormality.  A simple blood test to let myself and others have no doubt.

Because being believed doesn’t just unlock treatment.  It unlocks understanding, compassion, awareness, support and certainity.

I don’t know yet if XMRV will turn out to be the key.  I can’t say the prospect of being diagnosed with a retrovirus that I cannot ever be free from and that I am in danger of infecting others with, is something I welcome with open arms.  But the proof, the piece of paper, the confidence in the diagnosis, is something I would like very much indeed.

Chronically Ill and Left Behind?

A friend has just gone back to work after 9 months of maternity leave only to be told on her first day back that they would like to make her redundant.  She’s been preparing herself to go back to work for months only she doesn’t seem to have a job to go back to.  Whilst a colleague in a different team has her boss making cakes for everyone to welcome her back from maternity leave my friend finds herself dropped in at the deep end.

image by drumrick on flickr

Whilst she’s been away the technologies she works with have moved on.  She feels disconnected and like everyone has moved on without her.  I know how I felt going back to work there after 3 months of sick leave and I got to do a gradual return to work with reduced responsibilities.  But it did make me realise how strange it would be to return to an office work environment.  The circumstances would be different and I’d be starting afresh but it would still be a major adjustment.  Well, not a problem because I don’t want to return to the kind of working situation I used to be in before illness robbed me of working.

Anyway – I’m digressing.  My friend has to complete a skills audit profile for HR to see if they can reassign her to another role.  Also she needs to get that CV up to date.  She asked, and I offered, to help her out with these.

What was an advantage was I haven’t done a job since I worked with her so could remember quite well a lot of the roles, skills and experience her job involved a couple of years ago.

But what did leave me shocked was realising that the world has (quite possibly) moved on a lot since I was last employed.  Are there new rules about CV’s now?  Do you need to highlight different things, include your blog or create a virtual CV?  Have the rules of the game changed?

I’m not really asking for the answers here. I used to be a bit of an expert on looking for and applying for jobs.  I realised just how much time has passed with me on the sidelines, not keeping abreast of the world, not knowing anymore.

I realises that the world is changing while I sit here on the sofa for years on end busy being sick.

Everytime I go out somewhere I see a new building, a new housing estate, a new shop, a new road that I’ve not seen before but that don’t look particularly new.  Because it’s only new to me.   It changed while I sat on the sofa.  if someone doesn’t tell me about online in the channels I visit – then I don’t know about it.

image by designwallah on flickr

I wonder if other things are changing, developing and moving away from me aside from those physical environmental things.  Fashions, attitudes, social interactions, language, legislation, education.  Are the people who I’m closest to actually getting further away from me without me seeing it happening?  As their lives evolve and change with me just barely in it.

There’s not much I can do but to do as much as I can.  And I’m already doing that (and sometimes more).  So I can’t change the changes.  But perhaps I need to do more mentally prepared at just how much of an alien I am becoming in the worlds and lives I once knew so well.

I can see how relationships may not suddenly break from chronic illness, but gradually slowly over months and years the cracks can appear from all that wear.  How do I guard against that damage which is almost inperceivable to see happening, especially when I am typically too sick to do anything more than the meager amounts I can?

I guess life has no certainties for any of us.  You just have to do your best and make the most of what you’re given.  But it’s still frightening to lose so much – even if it some of it slips away slowly while you’re not looking.

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.

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:

• Hypereosinophilic Syndrome or HES (a rare condition)
• Behçet’s disease (a rare condition)
• Chairi Malformation (a rare condition)
• Multiple System Atrophy or MSA or Shy-Drager Syndrome (a rare condition)
• Ehlers-Danlos Syndrome or EDS (a rare condition)

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

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

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

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.

Rebalancing and Getting It A Bit Wrong

It’s day 2 of changes and I’m starting to see where routine shifts are going to naturally settle.

Day one of being home alone 9-5 went well. So well in fact I felt a bit silly for making a big fuss.  Growler was home at 5.20pm (with a spring in his step) and there were no dramas.  He expertly put exactly enough water in the kettle to last me through the day. Even if boiling 4 cups of water, then 3, then 2 isn’t eco friendly it helped me out on my first day.  I even discovered an energy saving trick for pouring kettle into my mug.  I made myself a bit of lunch (heated things up) and Growler had left plates and cutlery out for me.  I had one wobbly lipped moment in the morning but aside from that I remained positive and calm.  I even bravely answered the phone which turend out to be a wrong number.

So all in all a good start.

Day two and I woke again as Growler was getting ready to leave around 8.30 ish i think.  This is 1-2 hours earlier than I normally wake up naturally.  I seem to remember this was a difficult thing when he was going out to work last time.  So I either have to go to bed at 8.30pm (umm not keen on that) or night try chilling/napping in the day as recommended by my readers.  We’ll see.

Everything is kind of “we’ll see” at the moment.  I have to learn (re-learn) the shape of my day and the feel of it.  Waking earlier than usual means I’m getting up a lot earlier than usual.  I used to wake at 9.30-10.30 have breakfast in bed, sit and surf on my laptop until lunch. Then if it was a bad day have lunch in bed and get up in the afternoon or if it was an ok day get up and have lunch downstairs.  Because I can’t carry my laptop downstairs (safely for me and it) I’ve told G to leave the laptop downstairs for me.  That way it will a) give me a good reason to try and get up before lunch anyway and b) make me different things in the morning like drawing and reading.

Anyway I’m waking an hour or two earlier and so getting up mid morning and the day – the doing day – seems much much longer.  I have time to “do a little something” in the morning whereas before I am was strictly computer only in the mornings and art and stuff in the afternoon.

So I have to learn to balance things out better with my 9-5.  By 4.30 yesterday I felt I was hitting a wall.  i sually only get that if we’re out somewhere, staying with relatives/away for a weekend or on a typical day at around 10pm.  So it was a bit worrying.  I hope I figure things out quickly as a cumulative effect of hitting the wall at 4pm could be bad news.  That or get my mind altered to “do less first and then add more in”.

Somehow the excitement and nervousness of being self dependent in the day is making me want to move at a 100 miles an hour.  I hope that will settle as I get used to the idea and stop acting like a crazy woman ;o)

I know how to do this stuff, how to balance and pace and alter my mindset – but I’ve not needed to practice it for a while and I’ve had G to read me and say “it’s bad idea to such and such because you had a rough day yesterday” (me “Oh yer I forgot about feeling bad yesterday”).

I think I am desperate not to lose the productivity and momentum I’ve had with my art recently - but I have to face it that things have changed and even though they are small I do have extra demands on my resources (spoons). And it’s better to slow a little now than burn out and crash into being in a bad way later on.  NOW if I can just get that to lodge in my leaky brain …

Changes

I had my two remaining wisdom teeth out this last week. The procedure went well and I was with it after the sedation within an hour.  But it’s left me feeling a bit out of sorts.  It’s hard to put my finger on. 

I am experiencing dizziness again quite a lot ever since the sedation.  Whilst I’ve had dizziness before it hasn’t been a huge day to day symptom this last month or more. So either the sedation, or the “trauma” of the teeth being removed has made me very fatigued, or the sedation itself has had some kind of long lasting effect on my system.

But it’s more than dizziness.  It’s an almost bereft feeling.  Very odd considering how keen I have been to get these teeth out of my mouth for the last year.  But I think that feeling if passing.

Of course it’s also been a mask to hide behind and to stop me thinking about the major change happening in my life as from tomorrow.

Growler has a new job, in an office, 9am-5pm, 5 days a week.  It’s good news.  He’s excited about the job itself, it’s a year contract of good, steady money and security in times where a lot of companies are wobbling over budgets and freelancers are having to work extra hard to secure work.  The organisation has their office locally, in our city, just 15 minutes walk from our house.  It’s ideal and it’s a job he’s really looking forward to doing.  I think the work, the security and the structure will be really good for him.  I’m so proud of him and so excited for him.

The excitement is mixed with some trepidation about how my own 9-5 is going to work out.

I’ve spoken before about the fine balancing act of positivity/hope and practical/realism.  I’ve had 2 family members being super positive and suggesting the structure might be good for me too.  That it might give me the incentive I need.  Growler says this is out of well wishing and positiveness on their parts but I can’t help but feeling a sting that anyone should think what I need is motivation.  That if I am forced to get up and make my own lunch that will help me to get better.  This just suggest they don’t really understand the reality of my illness.  But I shan’t dwell on that for now because I am trying to think positive too in the face of major changes to my life and care.

My fear for myself and spending the majority of the day for the majority of the week alone and without practical support is only matched by my fear of how Growler is going to manage balancing a full time job with caring and looking after the house.  It’s unknown territory for both of us.  I get the sense from my parents and his that their most worried about him, but that might be because no-one wants to press me on how I am going to cope.

So my breadwinner is off to win regular bread and together we’ll muddle through a new way of living with ME/CFS. I am incredibly fortunate not only to have a supportive breadwinner but to have had the luxury of having him here, on hand nearly every day for over a year and a half.  I love hanging out with Growler.  Having him around every day has been a joy and helped normalise my world within these 4 walls of the house.  I have to think of this as a foundation for what lies ahead and try not to dwell on the upset of losing it.

It might mean I blog more.  Being alone a lot of the time.  It’s certainly going to present me challenges both in my day to day living tasks and in my marriage.  What I want is to be the supportive spouse and send Growler off to his new employer with no worries except focusing on a new job.  But I can’t seem to set aside my own overwhelming sense of fear and loss of what the future holds.  Of being scared that all the tiny extra’s of effort, all the things I forget when left to my own devices (how much is too much, when to drink, when to eat, how to keep perspective) will gradually wear my health away and leave me useless. Leave me being more a burden.  Yet the fear and the worry is self feeding – because worrying about it makes me feel ill! 

I can see how from the outside this could all seem like low self esteem, depression maybe, being dependent on my husband for every little thing.  That now with the ”incentive” it will make me better.  But truth is I AM dependent on my husband for a lot of things.  That doesn’t mean it’s wrong, or bad for my self esteem, it means I am chronically and severely ill.  I don’t rely on my husband to make me cups of herbal tea and bring them to me in bed because I can, because I am lazy, because I choose not to do it myself.  It’s because to make the tea myself means a whole complex set of weighing up of efforts over reward that usually means no herbal tea for me.  Because it’s not just about a teabag in a cup – it’s about moving out of bed, moving dowstairs to the kitchen .. the stairs being a huge effort this is minimised to once up, once down a day if possible so the move to make a cup of tea means first getting dressed, getting washed perhaps, gathering what I need with me (medication, phone and so on), resting inbetween these things, resting once down stairs, then maybe thinking about how to get water in the kettle … and so on.

If it were as simple as relying on my husband just because I can – I can promise you I’d be choosing to make my own tea.

So it seems a part of the pain and fear is the perception of the outside world.  Perception that I am more capable than I show – do I have to make myself more ill to prove to them I’m not?  Perception that with the right kind of motivation I’ll find I can do more – will they recognise the things I have to not do in order to do the essentials myself?  And really what they THINK doesn’t really matter.  All that matters is living my life the best way I can.  Finding the compromises that work the best for me, for me and my husband.  Finding ways to be happy and to not wreck what level of function I do have. Finding ways to keep my sanity, my perspective, my sense of self.  And trying to balance self care with not making myself worse.  Balancing my own happiness with my husbands.  Trying to balance security and regular income and my husbands job satisfaction with the challenges of being a person with ME on their own 8 hours a day, 5 days a week.  Trying to drag myself away from the fear and to get on with the living.

My head is stuffed full of things – but there doesn’t seem to be much sense coming out.  I’m not sure I wrote the blog post I wanted to, because now even I’m confused about what I want to say.  But that’s part of what I’m saying.  I’m a mixed up with thoughts and mixed up because ME makes my thinking cluttered and fuzzy and whizz around in a circle even once a conclusion has been reached.  I expect more rambling blog posts will follow.