Archive for July, 2007

Simple Ambitions?

I made a list of my real ambitions in life, in light of my illness and it goes like this:

  1. Make some money without a “job” (Barbara Winter & Barbara Sher style)
  2. Get well
  3. Get active
  4. Stay happily married

Simple eh?

Thing is I suddenly realised I don’t actually know the right way to do any of these.  Sudden crushing panic …

But when I considered some more I thought it’s simple …

  • Love wholly and fully
  • Be yourself
  • Trust yourself and your instincts
  • Believe

Not Getting To Sleep

I’ve had quite a few distrupted nights sleep this last week or so.  Usually I get the odd night here and there – usually because I have something consuming on my mind, or because I have consumed too much.  🙂

This is different.

I’m doing my usual bed time routine.  I’m going to bed around 10-10.30pm.  It’s usual for it to take me between 10 and thirty minutes to drop off to sleep.  But for maybe 4 out of 8 nights I’ve still been awake at 1am.  I think 2 hours past my normal drop off point is quite long enough to lie around waiting for sleep to come.

The last 3 times I’ve got up, surfed a little and even written in my journal.   Around 3am I go back to bed and seem to drop off pretty easily.

I really hope this isn’t the beginning of a screwy body clock for me.

I’ve always felt I’m a bit of a night owl.  I always had the sense that one day I would be a prolific artist working through the night and sleeping through most of the morning. 

Maybe it’s not such a bad idea … it’s certainly quiet and my broadband is free at this time of night!  But it’s not ideal – especially when you rely on other people to prepare meals for you and your dinner time is way out of synch with theirs. 

Plus, the big drawback of being about in the middle of the night is that ever since I got burguled around 4 years ago whilst I lay in my bed, I’ve been terrified of the dark.  It rekindled all my childhood fears of shadowy figures in the dark, plus a very real terror of some bloke breaking into my house in the darkness.

I have an odd thought about why I go to bed feeling tired, sleepy and ready for bed – then lie there for over 2 hours without falling asleep.  When I awake from sleeping I am exhausted and fatigued, much like I feel at the end of the day.  It’s as though when I go to bed and don’t fall asleep quickly (for whatever reason) it’s almost as though the day starts over again for me.  I feel more awake than when I awake from asleep in fact. 

Lying in the darkness (with night light of course) I am ready to start the day – I have almost forgotten I have not slept.  So coming away from the bedroom and into the light I occupy myself (surf, blog, whatever) until I am very tired indeed and my eyes are sore so that suddenly my whole body and mind remember I still in fact need to sleep!

It helps that I have no commitments and the world will still turn whatever time I sleep to tomorrow.  So for now I will do what I can and (most importantly) try not to worry about it.

My Chronic Illness, Infection, Drug Side Effect or Something New?

I know I’m not alone with this one. 

Do you ever get times when you feel a different kind of ill, a different kind of pain, a different sort of sensation? And it’s so difficult to say whether it’s:

  • The chronic illness already known but a new symptom, or a more severe episode, or a sign of improvement even – a fighting off the mystery cause of your illness
  • An infection, a cold, a virus like everyone else gets and you just got unlucky to have it on top of everything else
  • A side effect from a new drug, a new combination of medication and over the counter medicine or new vitamin, or new regime of fighting for health having a weird side effect.  Or even a drug you’ve been taking for ages that is now having a side effect through prolonged use.
  • Something new.  Something different from everything else.  Something your doctor should know about.

Sigh.

Friendly supportive people say that you should always get any new symptom checked out – don’t just blame every new ailment of your chronic illness.  That’s how nasty things take a hold and get more serious than they need to.

Which is all well and good if you can just ring your doctors and roll up for an appointment, like easy right? 

If you can get to see a doctor who is not only going to take this ailment seriously but also consider it within the context of your other health problems.  Who is going to patiently listen while you explain all the variables that might be causing it.  And who is not going to roll their eyes, glaze over and see you as a repeat offender, always finding something wrong.

So I’m holding out with my odd chest/breathing/throat thing that seems to be coming and going, but without a recognisable pattern.  Because it’s odd and because my friendly GP is on holiday.  Because I’ve started new drugs.  Because I’m also having an odd sleeping pattern and loss of appetite and bloating/nauseau when I do eat – and I feel like I have been here before.  And because I’m tired and I want an easy life – even if that means the occasional worry about why my chest feels weird.

So I just smile, keep my fluids up, try not to breath too deeply while the wheeze is bad and focus on other things.

My Big List of CFS Symptoms

My diagnosis is PVFS (Post Viral Fatigue Syndrome) / CFS (Chronic Fatigue Syndrome).  Also known as ME and in the USA as CFIDS (Chronic Fatigue and Immune Deficiency Syndrome).

DX Unknown commented on another of my posts and asked:

“I’ve been told for many years now that CFS was probably the cause of my episodic fatigue, but it wouldn’t explain all the other stuff. Still, over and over, I meet people such as yourself who are experiencing a WIDE range of symptoms. Here in the states, many doctors still believe symptoms like IBS and constant headaches (to name but a couple) are “rare” abberations of CFS, despite article after article in medical journals about how common it is. I guess I’m having to question if maybe it has been CFS along and my doctors just don’t appreciate how many other things go hand in hand with it.”

You can surf and find list after list of symptoms associated with CFS.  Many believe that CFS is a blanket diagnosis for multiple complex disorders.  Others believe CFS is not the same as a firm diagnosis of ME – CFS is for people who suffer fatigue as their main symptom whereas ME sufferers are the real multiple symptom sufferers.

I’m not going to get bogged down in names and who is deserving of being a genuine sufferer and not just with a general fatigue disorder (possible induced by stress, etc).

All I want to do is give you my list of symptoms, all of which I have read can be attributed to CFS/PFVS/ME/CFIDS – although not every symptom is on every list!  This illness is so vague and there is so little firm information – it drives me crazy sometimes!  But here it is – a personal description of what happens to me.

My doctor gave me a fact sheet about CFS when she first gently suggested that it could be CFS.  The list of symptoms presents itself as a definitive list and they say it’s unlikely you will suffer all of them.  Ha ha ha.  I wish.  I do suffer with them all.  Maybe not every one on the same day, and the list changes over time and severity of each ebbs and flows.  But have no mistake this mysterious illness has many many very real and very unpleasant symptoms. (NB: I would say this fact sheet was a very good starting point.  But it is not definitive and I would argue strongly against Graded Exercise and CBT being appropriate listed as “treatments”.  But that’s for another post.  Just exercise caution with the fact sheet is all I’m saying).

I’ll use the symptoms on that sheet and that I find on other resources as the basis for my list.

My Big List of CFS Symptoms:

  • Fatigue / exhaustion.  A total lack of energy.  Like my battery is flat and any re-charge lasts no time at all. I have this day in day out, consistently, with no let up.
  • Unrefreshing sleep.  I need to sleep for 9-10 hours. Sometimes I need up to 12 hours sleep.  But I wake tired, fatigued and exhausted not matter how little or hom much sleep I get.
  • Post exertional malaise – if I overdo it I suffer crashing fatigue and exhaustion even worse than normal – often leaving me bed bound for days at a time.  Day to day I don’t get this because I am able to organise my life to avoid overdoing it.  But I live with it every day because the slightest pushing too far will bring it on.
  • Feeling generally unwell or malaise which is similar to feeling like you have the flu.  It’s not considered by many medical lists to be a symptom but it’s one of the major problems – you just feel … off colour really.
  • Pains – most commonly muscular pains (myalgia), joint pains, and headaches. Mainly it’s stiffness on my neck and shoulders plus headaches.  Often the headaches develop into migraines.  Most days I feel at some point like a migraine is imminent as I get that pre-migraine fuzzy yucky head.  I am currently taking medication that helps ease these symptoms.  I also get other muscle pain and joint pain from time to time.  This is transient and less common but does tend to linger when it occurs.
  • Mental (‘cognitive’) difficulties such poor concentration, reduced attention span, poor memory for recent events, difficulty to plan or organise your thoughts, difficulty ‘finding the right words’ to say, sometimes feeling disorientated. I also get slurred speech as I get more tired through the day or have a bad day.  Almost every day I have problems with concentration and memory.  I need a lot of help.  I find it difficult to deal with official business on the phone because I get confused so easily.  If I am having a bad day or have overdone it the cogntive problems get worse and worse.  I generally struggle with words, writing, speech and so on when I am particularly bad – but this isn’t every day.  There’s a sliding scale of how severe these symptoms are. 
  • Tenderness and pain from lymph glands in the throat/neck
  • Irritable Bowel Syndrome / gut symptoms.  I take medication to control this which works most of the time but still leaves me with some stomach and bowel problems, though not as severe as they would be without the meds. For instance I also get excess, wind, bloating, alternating diarrhoea and constipation.  Less commonly I also get abdominal pains and nausea (feeling sick). Occasional loss of appetite.
  • Weak muscles in limbs -when I stand or hold something in my arms my muscles weaken very quickly.  Sometimes my legs are shakey when I stand – usually when I am particularly bad.  Sometimes I can’t stroke the cat more than a few times without overwhelming tiredness in my arm.
  • Poor grip.  Sometimes my grip is just poor, sometimes I can grip ok but it leaves my hand and/or wrist aching for a long while afterwards.  This is a transient symptom and less common
  • Sleeping difficulties – unable to sleep, disrupted sleep, vivid dreams.  This isn’t every day but is around a lot of the time for me.
  • Intolerance to noise – some noise I just cannot stand at all.  Also, more realted to my cogntive problems I think, I find it very difficult to have noise when I am trying to concentrate.  So I find it impossible to have a proper conversation whilst the television is on.  Also often to write while music is on, etc.  I tend to spend my day with no music, tv or radio on as it’s more soothing that way.
  • Sensory overload – it’s very easy for me to get over-stimulated and that then worsens my symptoms.  My tolerance is very low.  Excitable conversations, dramatic or fast moving films, shopping centres and busy crowded places, and so on.  Again this could be linked to cogntive problems.
  • Intolerance to light – not so common but does happen from time to time.
  • Difficulties with balance – perhaps around half of the time.  Particularly bad in the mornings.  I also struggle with my coordination.  I often need someone else to carry things for me as I tend to drop them, or to do any tasks involving any skill!
  • Dizziness from time to time – never sure if this is part of my migraines or a sort of odd head that is normal CFS.
  • Disordered temperature control of the body – about a thrid of the time I have problems with my body temperature more severe some times than others. 
  • Increased thirst .  I find I need to drink more throughout the day than I did before this severe phase.
  • Recurrent infections – I went through a phase of picking up lots of little infections.  I also have had an ezcma flare up which has lasted throughout this latest severe phase.
  • Blurry vision – which I get frequently.  It’s believed to be the eye muscles tiring very quickly – just like the rest of me!
  • Rash – this is a symptom that appears more of patient groups lists than medical ones.  I believe I get a rash when I am very very exhausted.  Mine is like a bumpy heat rash that I get on my forearms and a few bumps raise on  the backs of my hands.  Sometimes on my arms it is like goose bumps in almost a solid circle.  I also get a sort of pale heat rash on my neck.
  • Crawling skin sensation – like I have insects crawling on me.  One day I managed to see it happen on my arm- where it felt crawly my arm hairs were standing on end with no external stimuli and the rest of my arm was normal.
  • Restless legs – infrequently but persists for several days at a time usually bed time or long periods of sitting.
  • Muscle twitching – moves around my body and happens every so often
  • Dry eyes – almost all the time they are drier than they were before my illness, some days more severe than others.
  • Odd pallor – usually when I am very tired or having a bad patch.  Sort of a greyness or absence of colour.
  • Sore throat and difficulty swallowing – infrequent.  Sore throat presents as sort of a swollen feeling, about to start a bad sore throat and difficulty swallowing is minor but annoying. 
  • Shortness of breath – not on an asthma type scale but sometimes my breathing feels quite laboured and a lot of effort.  I also find I am very short of breath after a big effort like walking upstairs or making a cup of tea.
  • Sinus pain – occasionally and often also get it with jaw pain.
  • Teeth grinding (or possibly TMJ syndrome) – usually whilst asleep, sometimes unconciously in the day.  A dental splint has helped with this.
  • Sensitivity to stress – I’ve not found this on any lists but I suffer it and I know others who do too.  My tolerance for stressful things is greatly reduced and stress exacerbates my symptoms greatly – as quickly as physical activity does.  I avoid stressful things whenever possible.

I’m sure there’s more – but after such a long list my cognitive problems are kicking in!

It’s worth mentioning that all my blood tests for diagnosable conditions came back normal (including liver and kidney function, thyroid, diabetes, rheumatoid arthritis, lymes) and all there’s no sign of immune disorders and so forth (I am forgetting the right medical words!).

My other blood work which was “nothing to worry about” include red blood cell count which was high, but only just over the threshold of “normal”.  This test was consistent three times over 5+ months.  My cholesterol was slightly high.  My B12 was slightly high but I have been taking a large (2000 ug) dose of B12 so I assume without the suppliment the test would have shown low B12.  The suppliment helps only slightly however.

My white blood cells were up and down and all over the place when I had the intitial tests done – but I had som many “viral” infections it was difficult to get a consistent measure that wasn’t prejudiced by post or mid infection.

Here’s some sources of symptom list for you to check out so you don’t think I’m some kind of freak!

http://www.afme.org.uk/allaboutme.asp?table=contenttypetwo&id=4

http://www.wwcoco.com/cfids/bernesx.html

http://www.sleepydust.net/CHRONIC-FATIGUE-SYNDROME-SYMPTOMS.html

http://www.immunesupport.com/chronic-fatigue-syndrome-symptoms.htm

http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome#Course

Hours of Work Wasted (mini RANT)

Oh grrr!  I spent hours and hours over the last two days methodically doing some work online … upload, click, copy, paste, click, wait, click, wait, click, etc.

I know my brain doesn’t work so well since developing my illness so I made a list of all the tiny chunks of tasks I needed to do and in what order.  I took my time and I was so pleased to have a couple of days when I was capable of doing such tasks and would get something out of it at the end.

Except … once I was very near the end, checking links and so forth, I discovered the basic assumptions I had been working on were wrong.  I spent 2 days changing this whole site to work in a “better way” only to discover that way sucks.  Only 10% of it is keepable – so I have another 2 days of work to get back to where I was.

What frustrates me most isn’t the loss of the work.  Even the loss of the ‘capable time’ isn’t the worst part.  The thing I hate about it is that I wasn’t sharp enough to test the basic principle at the beginning.  To test it was what I wanted instead of my brain going “oh yer – good idea … la la la …” and forgetting to make sure the basic principle was sound.

There was a time, not so very long ago, when my mind worked in a way that meant every angle would be considered, contemplated and scrutinised before getting stuck into the actual doing of the thing. 

I know I have to get stuck into doing most of the time before I forget what I was about to do 🙂

But, but, but … why isn’t my mind as keen, sharp … erm … I can’t think of a word that means “thinking in a wide and encompassing way”.  Sigh.

It’s not a real angry rant.  It’s just a humph really.  I hoped a blog might help get it off my chest – because I know why and I know it doesn’t really matter.  That I will just get up and do it all again (hopefully properly) when I am able to next.  And that trying to be clever in my current state of health and cognitive function is probably not a sensible thing to do. 

So I think it has helped and I think “Keep It Simple” is the lesson to be learnt here!

Amitriptyline For Pain Relief

I’ve been taking low dose amitriptyline for over a month now for chronic pain and migraine relief.

Briefly I have had (so far) success with it.  I’m doing a blog post about my experience in the hope it may help others considering trying it.

For me a 20mg dose taken at night has offered excellent day to day relief from migraines, pre-migraine head (feeling light headed and sickly) and for chronic pain like stiffness in my neck and shoulders.

I find with my ME/CFS/CFIDS the low dose is not quite enough to prevent pain and migraine when I do more than usual.  If I overdo it even slightly the pain quickly tips past my blanked out point.  But I find it beneficial all the same and day to day have been using just a fraction of over the counter pain killers and prescribed migraine medication.

I take the amitriptyline at night to avoid the worst of the sedative type effect.  If I have to get up in the night to use the toilet I feel a bit like I am walking through treacle.

I started on a 10mg dose (I think this is the lowest dose you can take).  The relief was just as effective for me as with 20mg but I found it started to wear off around 6-7 hours before the next dose was due (late afternoon and evening for me).  20mg has proven to me the optimum dose for me personally.

I did take my nightly dose up to 30mg under my doctors direction but found the side effects too bad to handle.  I suffered with drowsiness during the day time, constantly feeling like I was ready to sleep.  I also had many headaches and a terrible stiffness in my neck which felt very solid and even worse than the pain I have with no medication at all!  Also I suffered with a constant dry mouth and throat, a sensation not soothed by drinking water or anything else.  The inside of my mouth and back of my throat started to feel like rubber after a week.  I drank lots of fluids (being constantly thirsty) but it didn’t help and just made me need many trips to the toilet!

Now I’m back down to 20mg those effects have gone.  I still feel a little drowsy in the earlier part of the morning but it does not interfere badly with my usual routine.  I also still have a dry mouth but this is only usually very bad 30-60 minutes after taking the tablets.  I also get terrible dry eyes but this is only overnight and does not persist the next day.

The pain relief lasts the whole of the next day up until a couple of hours before my next dose is due.

Everyone is different and people with ME/CFS/CFIDS can be very sensitive to medications.  I have yet to review my findings with my doctor – who knows she may want me to try a bigger dose for longer to see if the side effects persist!

I was highly sceptical about taking a tri-cylic or any kind of anti-depressant for pain relief and was worried it would send out the wrong signals about my condition.  The dosage is too low to have an anti-depressant effect and if people are misinformed I guess it’s up to me to put them straight 🙂 

Although it is still early days on this medication, personally I have found amitriptyline to be a useful  and effective preventative treatment for chronic migraines and pre-migraine feelings, as well as for low level chronic pain.

——– ——– ——– ——– ——– ——–

UPDATE: 12 August 2010

I’ve been taking amitriptyline for pain relief for over 3 years now.  It is still effective in controlling my day to day pain.  I take my tablets around 7.30pm and taking them earlier has meant I’ve lost that lasting groggy feeling when I wake.

Ten months ago I upped my dosage (with my GP) to 30mg and that is still my current dosage.  I did experience (as before) some initial increase in pain levels when I upped the dose which lasted a few weeks.  I was also a lot more tired in the mornings which may or may not have been related.  It’s very hard to tell with ME/CFS.

It’s difficult to measure if that increase in pain has persisted or not.  Generally speaking I am still not taking as many pain killers or migraine tablets as I was before I had low dose tricyclics.

The side effects of a dry mouth continues to persist but I’m glad to report that I don’t seem to have had any more dental problems than has been typical for me (a sweet tooth I’m afraid).  The thirst and dry mouth bugs me – but the pain relief is worth it.

I do still get pain and migraines.  It’s not totally gone for me.  But day to day the pain is much better.  Also I realise now that my chronic back pain (compacted disc in my lower spine and sciatica) is pretty much gone unless I do silly things to aggreviate the problem.  The pain relief of course masks the pain so I’m still beating up my spine and pinching my nerves but most days I don’t feel it at all.  This is a great bonus for me.

I’m really pleased and proud that so many people have found this blog post useful especially those who’ve felt apprehensive about trying amitriptyline for pain and/or migraine relief.

Life Plan B

If you had asked me prior to ME/CFS I wouldn’t have said I had a life plan – at least not beyond being happy.

Chronic illness can put a different focus on life and all the details within.  I found out that I had more of a plan that I thought – it just took having all these obstacles in the way to see it.

Silly thing is that chronic illness doesn’t neccesarily make what I want from life vastly different to before – my plan A was broad brush strokes and feel my way.  But it does bring things into a sharper focus, making me evaluate and prioritise in order to survive.

I’m not sure it’s good enough for me to take a “we’ll see” attitude to starting and raising a family anymore.  I’m 34 this year and time is rolling by, but my level of debility hasn’t changed much in the last 8 months.  I can hardly look after my own day to day needs let alone a childs.

Same with career.  The “one day”mantra, which used to sound so carefree has a defeatist ring to it these days.  I don’t have the energy or health to burst kick-ass into a new blossoming career and to Make Things Happen. But I reckon that’s all the more reason to get started now.  With a little by little, gently does it approach it’s going to take a lot of time to build any momentum. 

And you never do know what’s around the corner.  That’s one lesson I have certainly learnt.

I have the same broad brush strokes about happiness, love, career, security and family in my Plan B even if the details are a little different.  Now I seem to be looking at it all from a very different perspective, a chronically ill perspective.  I don’t know when or if I will be any better, or even any worse.

I feel I have to start making choosing some goals, deciding to leave others and shuffling slowly towards the achievable. 

I’ve never been very good at choosing, for fear of making a mistake.  But if I don’t I fear the prizes will slip away altogether.


Fundraising


Push It 11 Sep 2011

for ME Research

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.