ChronicallyMe

I’m not a shining example of an ill human being.  I wish I were one of these people about whom they say “No matter how bad she felt she never complained“.  Clearly - that is not me.

How do those people do it?

I’m in the midst of a horrible gastric thing again.  Awoken early in the morning by a worsening in my abdominal cramps caused (probably) by constipation, trapped wind and spasming in my bowel.  Just for good measure I’m also fighting off a migraine - probably due to the twisty contorted faces I’ve been pulling all night trying to get comfortable and sleep.  Oh and the icing on the cake - a big dollop of nausea too.  Not to mention all the squirming and writhing, rocking and walking, fidgeting and belly rubbing is becoming pretty exhausting now.

So I whimper quietly to myself trying not to wake Growler.  I can’t make it downstairs and I know I’m going to want to lie down just as soon as some of this eases (please let this ease).  But once he’s awake I let go and squeak, growl, grizzle, moan and swear.

I am miserable with the pain and the discomfort.  I want it to stop - please stop.  I try to console myself with all the people in the world (all the people I know) going through worse things than me but I’m still writhing and twisting and sqeaking.

“No matter how bad she felt she always complained”.

It’s times like these I’m reminded of when I was a young girl and had some knee scraping/twisted ankle/earache or another. 

I was not a gracious patient even then it seems as I remember clearly my mom, exasperated, saying “Oh god help you if you ever experience something REALLY painful.” 

It’s kind of haunted me ever since.  If this wasn’t real pain then what was I in for?  Mum’s are always right (ha) so if I do get real pain I’ll never cope with it.  I was hardly ever ill as a child and indeed into my late twenties.  I’ve never (touch wood) broken a bone and never set foot in a hospital until my referral for my back problem in my late twenties.

I stumbled through life knowing that if I ever experienced real pain I was done for.  I thought it was all the more disappointing for my mum as she has an amazing tolerance for pain and keeping going.  When the doctor at the hospital diagnosed her (quite by chance) with an underactive thyroid he told her she should have been dead.  She fought for so long without her GP recognising the condition and pushed past the pain and the fatigue.  Why couldn’t I be more like her.

In 2001 I started getting pain in my leg which I just couldn’t shake.  It took me months to go to the doctor who instantly referred me to the hospital.  When I finally had my back x-rayed my lower discs were (are) compacted and the specialist said these magic words “there’s not many people your age in as much pain as you are“.

I’d been quietly muttering about my “leg pain” for months and months to parental reactions of rolled eyes.  I got the distinct impression they thought I was making it up as an excuse to be lazy.  A year or two later, once I had learnt techniques to minimise triggering sciatic and back pain, I realised just how much pain I had been in and how well I had tolerated it.  The only sick days I took due to my back was a few days when I was so spaced out on painkillers it wasn’t practical.

Now I know this stabbing, grinding cramping isn’t at the top of my pain scale.   In fact it sounds really wussy to complain about it all.  But it’s unrelenting.  I’m not used to constant pain in that part of my body and I’m having trouble coping with it.  I’m having trouble coing with knowing I just need to eat one thing that’s not quite right (probably without realising it won’t be quite right) and I get all of this back again.  I get all this pain and discomfort sweeping down on me and it will take a day or two or three or more to get any relief.

So, yes, I am moaning about the pain.  No, I’m not one of those amazing people who “never complains not matter how bad she feels”.  But I reckon if I am moaning - then it’s probably pretty bad.

As promised I’ve started taking D-Ribose and implemented my plan of action.

I’ve been taking daily three 5mg doses of D-Ribose for a week now.  I also introduced 200mg of Co-Enzyme Q10 and 500mg of L-Carnitine daily on top of the key suppliments I already take. 

Two weeks ago I started making (even more) dietary changes to target my IBS problems following advice on helpwithibs.com - mainly to be stricter in avoiding dairy, red meat, chocolate, egg yolks, and carbonated drinks (having already reduced my dairy intake and spurred on by having terrible gastric problems after switching to scrambled eggs for breakfast).

The first two days of D-Ribose I could feel it having an effect - giving my body a boost and lifting fatigue levels.  This came after a “good” week where I had been out a few times and had company for a few days.  I was at a low ebb and the D-Ribose felt magical.

Then on day 3 I experienced some kind of gastric flare up due to … I don’t know what.  Certainly D-Ribose is not supposed to have any side effects other than a risk of hypoglycemia and possibly loose bowels (definately not my problem!). 

Having felt extremely naseous with the anti-oxidant N-Acetyl Cysteine in the past I stopped taking my one of my new suppliments Q10 just in case.  I’ve had L-Carnitine 500mg in the past without problems so have persevered with it for the full week.

So on day three I felt as exhausted as I would have typically after the previous week’s exertions and without the D-Ribose.  Am I getting the kick start I was promised?  I’m not sure yet.  But I’m giving it time.  At least the 2-3 weeks that was suggested.

The gastric flare up has continued pretty much constantly - the only let off being Friday through to Saturday morning. 

I’m utterly miserable with near constant discomfort, heartburn constipation and wind with the occasional reflux.  And Continue reading ‘D-Ribose Action Plan - First Week’

This week’s latest symptom is terrible gastric cramps/pain which I’ve been experiencing in the evening and at night.  It’s been a while since I had a bad run of IBS cramps which is particularly annoying as my diet is pretty good at the moment. 

That’s not really what I wanted to talk about though. It’s just that yet another round of symptoms and pain made me think something startling.

Whilst I was huddled in bed last night hoping to squash the pain away I thought something that has never entered my head before … CFS has ruined my life. 

CFS/ME has trashed my life - totally.  It has robbed me of pretty much everything including hopes, plans and aspirations for the future.  I think of my mum’s quivering lip as she has (on several occasions) been close to breaking down at the thought of all the things I may never get to do (including having a family of my own).   She can only bite her lip, look away and ask in a quiet voice to change the subject.  And I see the pain and it’s like a manifestation of the pain I feel, the grief I feel for the things I may never have.  This illness ravaged my life and that of my family.

What’s really shocking though is that, odd as it may sound, I don’t remember having heard that thought in my head before - CFS has ruined my life.  This was the first time it had occurred to me even after two and half years of being ill.

I’ve felt immense frustration.  I’ve felt anger, despair, longing, grief and utter sadness.  I’ve asked why me, why now, how did this happen, when did it start, when will it end,  how will I cope, what if I never get better, what if I get worse, did I do something to deserve this?  I’ve said it’s not fair, I don’t want this, it’s not real, I am weak.  But I’ve never felt that this illness has ruined my life.

It’s certainly squashed parts of my life.  I’ve lost my job and am now unable to work.  There’s a list as long as my arm of things I can’t do, shouldn’t do, dare not plan for.  But I think I have managed to maintain a focus on what I can do, rather than what I can’t.  It hasn’t ruined my life because - well - I have a good life which makes me very happy.

The list of can’t-do is so large and overwhelming it really doesn’t help me to dwell on it.  What’s the point?  Far better to live the best life I can while I can.  Some days it’s easier to set aside the can’t-do list than others but a far larger proportion of my life is spent on the can rather than the can’t.  It’s a lot easier for me than for some as with the support of my husband he enables me to use a large amount of my energy on things I enjoy rather than having to fight to just do survival tasks.  I am very fortunate in that regard.

As soon as the thought “CFS has runied my life” flashed across my brain I realised that way madness lies.  To allow such a thought into my heart and carry it with me would be toxic and sure to drag my spirits down into a deep depression.  It would be too too easy to wrap this thought around me but it would suffocate me and really would ruin everything I have fought so hard for.

All of which makes me reflect and realise that I do a pretty good job of being positive.  Positivity isn’t a trait I tend to associate with myself - it’s not something that has, I thought, ever come naturally.  I’m the first to moan when I’m tired, hungry, unhappy or ill.  I hear myself and think of Eeyore.

But it seems I’m able to be a lot more positive than I ever realised.  Faced with the brutal reality of how incredibly hard it is to be largely housebound due a fatiguing, disabling, debilitating chronic illness I seem to keep my head above the murky waters (most of the time).

I think I also have a deep belief and hope that it won’t be like this forever and that one day I will get better.  I’m not sure if I will get back to my old level of healthy but I have a hope that I will and that I will be even healthier.  I am realistic about the prognosis but hopeful.  I am, it seems, just like the help guides I read last year said I should strive to be like.  Which for me is a huge relief and a cause for celebration. 

I have worried that I am too negative, that I haven’t learnt to accept my illness and my limitations, that I don’t push enough or that I push too much, that somehow fundamentally I am Getting It All Wrong.  When in fact I am doing a pretty good job.  I’m not a super human and my illness isn’t consistent or predictable - so there’s going to be a lot of ups/downs and swings/roundabouts and constantly shifting ground.  And that is ok too.

There is also a lot to be said for the embracing of a simple life with simple pleasures - a necessity deemed by chronic disabling illness but one which has many benefits to offer. 

Not everyone can stomach that silver lining talk.  How can something so devasting be a good thing?  Well of course it’s not what I would wish for - I’d like to be bursting with energy and making the most of a full, active life with few limitations.  What I am saying is that even with a life stripped to a bare minimum you can still find happiness.

For me thinking that CFS/ME has ruined my life has been a really uplifting experience.

There is a reason I am whining sharing with you about having another (or a flare up of the same) cold / sinus infection / throat infection.

When you have ME/CFS your immune system seems to get mightily messed up.  In fact your body generally gets messed up.  You have abnormal reactions to lots of things including common infections, some medication, certain foods, stress and anxiety, exercise and exertion, mental stimulation, sound, light …

ME/CFS isn’t just a condition where people feel tired all the time - it’s much more complex than that. 

Whether these disfunctions are caused by faulty brain chemistry, bad signals between the brain and body functions, gene abormalities, compromising of blood cells, chronic (possibly hidden) infection, or other disfunctions of the neurlogical, immune, endocrine or autonomic systems … well no-one can say with absolute certainity. There’s even a chance that ME/CFS sufferers have sub groupings of the kind of disfunctions experienced which has yet to be properly identified and given diagnostics.

But I do know that my body doesn’t react in expected ways to things - things which previously it didn’t have problems with. 

So yes, everyone gets colds.  The difference for me as a ME/CFS sufferer is that when I catch a cold which might take a “healthy” person a few days or a week to get over - it takes me a month, maybe even two or three months.  And because my body is already debilitated - a cold sets me back much further than it would a healthy person.

It’s not like I have ME/CFS and a virus is just a snuffle on top. 

Lets say my body runs on a tiny battery which is rubbish at holding a charge - The energy runs out very quickly.  That energy is for everything - not just walking but talking, thinking, digesting food, absorbing medication, breathing - everything.

Having a snuffle limits how much charge I can even get into that tiny battery, as well as draining much of the energy away in order to fight a virus or infection.  Just like a three day cold took me three months to beat - that run down feeling is skewed just as badly for me.

Some ME/CFS sufferers have an immune system which disfunctions in different ways - they never catch colds or viruses which are doing the rounds.  That’s the thing about a ME/CFS disfunctioning body - you never know what you’re going to get (or not get).

My weekend with my dad acting as respite gofer went really well.  I was relaxed and asking for help was a lot easier than I thought.  I did limit help to fetching and carrying though.  But yes, it was a positive experience.

Their house is in a beautiful spot surround by woodland and bracken - with deer and foxes regular visitors.  The sun shone for my weekend away, which combined with their house being all on one level (so not dragging myself up and down stairs) I was able to potter around outside on the second day for a short while.  I took a few photographs in the sunshine and shuffled a short distance with my dad by my side.  very pleasant - even if I did overdo it a little.

Once Growler picked me up and got me home I felt so good I had a little potter at home too - around the garden once and a little tidying in the house.  Now that was overdoing it.  That evening I had a bad migraine which the drugs didn’t banish so I was sleeping fitfully by 9.30pm.  Thankfully no migraine vomiting - always a worry with my regular pain meds and potentially missing a dose through such things.

Next day I had a sore throat which escalated to a raw throat which felt like it as splitting open if I talked too much.  Very like past bouts of tonsillitis.  It didn’t improve much and my tonsils were starting to look inflammed.  Then my sinuses started off again.  Today I am right back to that face aching misery of January - having no choice but to breath through my mouth and crackle through the sore throat

I went to my doctors yesterday (a very romantic valentines treat!) and saw the Nurse Prescriber.  She’s always lovely, has a great manner and a good attitude.  Although not an out and out bacterial infection she said that she would give me anti-biotics as I have had persistent problems, my throat is inflammed and I am at risk of a secondary infection.  So I have a week of penicillin to take with VERY strict instructions about when to take them to avoid stomach problems.  Or should I say MORE stomach problems.

I’ve bought some probiotic and prebiotic drinks to help ease the process.  But I can’t quite decide the optimum time of day to take it.  As it is I’ve had to write a drugs schedule.

I’m also back on the steam inhalation and (yes Nina) I now have a netti pot which is giving some temporary relief and hopefully helping with the infection too.  I just wish I had the energy to keep on top of everything! 

Wake Up -> Antibiotic -> Paracetomal, Decongestant -> Mebeverine -> Breakfast -> Netti Nasal Cleanse -> Steam ->  Aspirin Gargle -> Antibiotic -> Paracetomal, Decongestant -> Mebeverine -> Lunch -> Probiotic -> Netti Nasal Cleanse ->  Get Up -> Steam -> Aspirin Gargle ->  Antibiotic -> Paracetomal, Decongestant -> Mebeverine -> Evening Meal -> Aspirin Gargle -> Steam -> Paracetomal, Decongestant -> Bed -> Antibiotic ->  Netti Nasal Cleanse ->  Amitriptyline -> Sleep (sort of sleep)

… I think.  Possibly with some Ibuprofen thrown in.  Definately a couple of litres of water, hot lemon with honey and peppermint tea.  And lots of tissues. 

Or maybe not quite in that order. Sigh.

It’s no wonder I am feeling a tiny bit sorry for myself (having had around 6 days of feeling without a cold in the last 2 months) and am confused about simple decisions … like “is there anything you want?” and “do you want your steam now?”. Although I know I am damn lucky to have someone to offer

So that’s me.  Back to the lurgy, with antibiotics that may or may not help and may or may not make my ME/CFS worse anyway, with a lack of good breathing and a lot of aches.

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’