ChronicallyMe

The Bad Stuff:

I am so sick of the rubbish parts of my life.  Of not being able.  Full stop.

Sick of feeling crappy.  Sick of feeling exhausted.  Sick of every day looking the same.  Sick of not knowing why.  Sick of how a little virus can knock me down so hard.  Sick of these four walls.  Sick of not having physical ability to fulfill my needs let alone my wants. Sick of having to plan but not being able to plan fully.

I don’t think I’ve washed for 5 days … but I can’t really remember.  I’ve spent 2 of those 5 days in bed all day - morning, noon and night.  Prior to that I’d only spent 2 or 3 days in bed all day in the last year.

I lost most of summer 2007 to a virus which turned into a chest infection and took me 3 months to recover from.  I lost all of January 2008 to another virus affecting my sinuses and throat.  I was better for all of 5 days (and by better I mean back to dealing with “just” crappy CFS/ME) before I got hit by another virus, or a flare up of the same.

Argh!

I miss the outdoors.  I miss the world.  I miss my friends.  I miss being able to be a proper daughter, a proper partner.  I miss being spontaneous.  I miss being able to work out this kind of frustration by engaging in physical activity.

The Bright Side:

Being frustrated, angry, upset about something isn’t going to stop it from happening.  It isn’t going to bring a solution.  It doesn’t change that I am ill.

It’s important for me to remember that I am ill and it’s CFS/ME that brings the limitations.  It’s not lack of wanting, motivation or being weak.  If anything I am strong not weak.

Anyone who is used to leading an active life and who has to be housebound for everything except doctors appointment (and being ferried to respite gofers) is going to feel a bit whacky and out of sorts. 

It’s not like I have this terrible life and I am in fact pretty content in my life such as it has to be.  I have seen family and friends these past 4 months and enjoyed their company.  Indeed in autumn/winter 2007 I was starting to do a bit more and get out and about.  Many of my symptoms are fairly stable when there isn’t a virus aorund to cock things up - so it’s much easier to navigate life and avoid very nasty episodes. December was an exercise in pacing and restraint for enjoying Christmas festivities - which I did very much.  There were small improvements.

It’s just hard sometimes to keep the good stuff and let go of the bad stuff. 

I know I can do it.  I know I am very fortunate in so many ways.  

I give thanks for the life I have. 

But it would be good to have a great life where I also get to be more able please …

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’

 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 http://petitions.pm.gov.uk/SickNotesGPs/sign

I’m feeling oddly gloomy today.  I can’t explain quite why.  But I am making attempts to adjust that mood - it’s just isn’t happening.

I sort of feel like I’m looking for an answer or an inspiration.  I’ve identified a handful of books that I’m sure will help.  In fact - I realised I have books on my shelp, some favourites and some as yet unread, which would also help.  I want to read them.  But I just can’t.  I can’t bring myself to hold the book and turn the pages - let alone follow the lines and make sense of the words.

I sort of feel like I’m missing some of the things that reward and offer me a cathartic outlet. 

I want to blog - but even as I type I think it’s worthless and confused and really not that interesting.  The scraps of brain fluff from Rachel’s head in a whiney Eeyore tone.

I want to draw.  But I can’t do it.  I think of things to try, I move the pen and it’s just awful.

I want to paint.  But, aside from the physical effort of organising materials and space to enable me to do so, I have no idea what to paint.  And I know that painting without a clue leaves me with a mess and a saddened heart.  Plus the idea of moving the brush back and forth - well I love the movement of the paint and colour - but the physical action of moving my hand and arm that much … well I know at this stage my muscles will let me down.

So it’s just not happening.

I’m not even going to get into wanting fresh air and to see the outside world, to have fun, see people I love and do a whole list of other stuff.  A whole ist of stuff which is so smal and innocent - but so out of reach.

Now I’m just moaning.  I’m frustrated for sure.  But it’s simmering as self loathing for not being able to do things.  Hence the gloominess.

I’m not done yet.  Fume, seethe, fester …

1. I hate that I can’t just wash my hair when I feel like it
2. I hate that I haven’t made it to the hairdressers in over a year
3. I hate that noise of chainsaws and hedge cutters from work being done next door
4. I hate that next door are having their hedge and shrubs cut back so now our garden looks even worse than ever and I could cry because I can’t do anything about it
5. I hate that I get hungry but don’t really want food in my stomach - and even though I enjoy eating the food it makes my insides feel horrible.  Whatever I eat.
6. I hate that I am still employed (with a contract) but haven’t worked a full day for over 15 months, am not getting any money and have no idea when or if I will ever be able to work again
7. I hate that although my bed is wonderfully comfey I am too hot, too cold, too hot - or just one part of me is hot while the rest is cold
8. I hate that all I want is to purchase a sible roll of sellotape and internet shopping has finally let me down.  I can buy 6 rolls but not 1.
9. I hate that my mind whirs like crazy but doesn’t seem to actually contain any useful, linear thoughts or figure anything out.  When I try to access it it’s just blank.
10. I hate that I am diagnosed with CFS when there is so much controversy about whether this is one condition or many and feeling like I have to prove how ill I am to qualify as proper CFS.
11. I hate that most of the things I hate (like number 10) are formed from self construction and not direct outside influence.  Except for sellotape and noise - those are definately external.
12. I hate that I want to use my laptop and surf so much - and I also hate that when I try to cut down I realise the reason I do it so much is because I’m physically not able to do much else.
13. I hate that I am hating things because I never like to use that word and I don’t want to be a moaner

It’s going to be a self indlugent rant come pity fest this post I think.

I’ve been thinking a lot about Screw Bronze’s blog post at Ouch about the silent life of disability.  About how some things you don’t get told about - because we try to keep certain things private (understandbly so).

I’m feeling.  Feeling a sort of overwhelming sadness, with smatterings of frustration and a hint of “it’s all hopeless”.

Everything which is average for most people - WAS average for me before - is now so all encompassing. 

Yesterday hubbie drove me to my dad’s and we drank tea and chatted for a couple of hours.  I enjoyed myself, I laughed, I belly laughed, I talked a lot.  After 1 hour and around 40 minutes I started to slow down - my speech, my reactions, my comprehension.  I felt kind of drunk before I even left the house to go.  But I was really drained after chatting.

What I hate is that friends and family feel they have to apologise for me feeling rubbish - that because we talked and laughed and it made me feel worse they have to say sorry.  They feel responsible.  It’s not fair on them to think that way.  It’s no-one’s fault.  Being able to chat for 2 hours in a light easy loving way shouldn’t be difficult! 

But it is.  So where does that leave me? I also asked the question - do I have to offset the emotional boost these kinds of visits give me against the physical price I inevitably pay?  When did I get to a point where this was so difficult?  Or was it this difficult 6 months ago and I pushed harder (and paid more)?

Argh!  What the hell happened to my life?

Next week we have a family celebration back in Wales with hubbie’s side of the family.  Just a quiet family meal out somewhere nice.  It’s over a week away.  Yet hubbie has already mapped out an energy maximising plan for (me) in terms of travel and so on.  And I’m already trying to plan how to conserve enough energy to get through it - and with luck to get through it without anyone much noticing I’m anything but normal. 

So I’m figuring out when I should have a bath so I can wash my hair to be half reasonably presented on the night.  And whilst hubbie has a plan I wonder if it involves minimum number of trips up and down stairs to get changed and so forth.  Because that’s my level of detail to conserve energy.  We’re not talking a quick sit for 20 minutes to boost the old battery.  We’re talking how many time I have to put a sock on and take it off.

It’s one evening.  I’ve been planning for a month - so I’ve avoided doing other things in an effort to recoop some energy and avoid expending it prior to this.

This weekend there’s a live arts event I really want to go to.  I think it would do me a great deal of good to get out and see different people.  To mic in that world for a while.  BUT even the effort of getting into the city - just of sitting in the car for 30 minutes and arriving at the venue already seems like too much.  Especially with this family celebration to attend days afterwards. 

I am seemingly down to one thing/trip a fortnight - possibly a month if it’s “big” (ie. more than one person, more than 2 hours or more stimulus than average).

I hate this.  I hate it.  How did my life get to this? 

I mean the good news is i can hear my moms voice in my head saying that it doesn’t matter what i wear, or how I look or what I am like when I get there - people just want to see me and they care about me. 

But there’s all this time you see.  This vast expanse of minutes.  All this gap between stuff.

I’m starting to think I have been trying to pack my minutes full of noise so I don’t have to face the hollow echo of nothingness.  That I’m afraid to let go of being a human “doing” and become a human “being”.  I thought I was past that.  But maybe not.  Or maybe it’s continual adjustment that’s needed.  Because spending a week being liad up and unable to do everyday things is one thing, being like that for a couple of months is quite another.  And I’m now facing having been like that consistently for many many months and staring at a future with more of the same to come.

What’s been additionally hard for me to bear is that I’m finding it so difficult to draw at the moment.  My drawings, my art, was adjusted to fot within my limitations as it was.  Now those seemingly have closed in and I don’t have enough control over the pen, or brain to make drawings, or energy to finish it and paint it and care about it.

Maybe I am so busy filling in the quiet spaces (with mainly laptop orientated stuff) I am actually depleting the resources I have and am in a viscous cycle.  Or maybe it’s a side effect of the amatriptyline.  Or maybe I am getting worse.