ChronicallyMe

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’

My christmas cold lingers and is wiping all traces of energy from me.  My brain isn’t too bad but everything seems dulled.  I have mental lists of things I could do, want to do, need to do - but no reserves at all with which to try.

My limited activities have been limited yet further - even the basics have been cut down.  My spirits are fairly good, but prone to exasperation and frustation although even those feelings are dulled.

The virus is mainly in my sinuses and throat - dulling my hearing, grating on my throat, pressing on my face and sometimes with a spiking headache.  Like my CFS although in this case much more rapid, the virus symptoms are cycling.  Yesterday my voice and throat were much better, my sinus clearer but my cough going strong.  Today I wake to no voice at all, restored now to at best a gravelly rumble - my throat is irritated, raw and dry, my sinuses dry and clogged, my hearing dulled once more.

I’m wishing Growler was fit and healthy but he too has the virus which does make for a useful comparison of my progress.  I’m able to not be too despairing seeing how long it’s taking him to get over the virus and how wiped out he is.  But of course this doesn’t help with feeling jolly about life - watching a poorly exhausted Growler tend to my needs when all he wants is to flop and rest.

So … it’s a time of trying to maintain a balance and perspective - to stop the bottom lip from trembling and reminding myself that things are OK.  But managing to be or do or exist much outside of the body with it’s symptoms and irritants and annoyances is difficult right now.

Happy on the inside though.

Well I am feeling mighty sorry for myself.  On top of recovery from (very enjoyable) post Christmas socialising and visiting, on top of usual ME/CFS exhaustion, on top of menstrual cramps and back ache, on top of sciatic pain from too many soft sofas and bed … I have a cold.  A snotty, chesty, sore, aching, blocked, runny, thumping, feverish, voice losing cold.

With it comes many disappoinments.  Not being able to draw the pictures I whipped up in my mind and then losing inspiration. Not being able to cuddle with my lovely and have a hopeful, loving, fun new years eve. Not being able to relax after the bustle of xmas (planned so well).  Not being able to play with my gifts.

An even bigger disappointment … realising my wonder suppliment is so wonderful after all.  Not only have I not made the kind of (slight) physical improvement I had hoped for following the increased dosage of Allimax - but it also seems that taking 6 capsules a day has done nothing to fend of the virus that has caused this stinking horrible cold.  My faith in it is undermined.

I’m not sure if you’ve followed this suppliment use before but I find myself asking - how is going to fight a “stealth virus” in my body when it can’t even fight this cold?  I can compare my colds progression with my husbands and whilst I may have an edge over my usual CFS/ME handling of a cold it’s not giving me that much of a boost.

Maybe it can be effective in long term use.  But having taken it for over 4 months, having increased dosage to 6 capsules a day and having spent a lot of money to do that I’m not convinced I can justify the cost to increase to dose further or to continue.  The manufacturers say 10 capsules a day for a week (I think) can cure MRSA.  Surely 6 should be combatting a cold?  Just 1 capsule is supposed to help me not contract it in the first place.  Surely 6 times that is not an unrealistic expectation even if my immune system is comprimised. 

So until someone can show some extensive effect trials, and offer me a NHS paid version I think this is one guinea pig who is off the experiment.

I’ll go back to my tissues and drink some honey and lemon and wait for my body to do it’s best. Please don’t cough in my direction - I’m full to capacity with ickiness right now.