Archive for February, 2008

Healthy Partner Perspective on Frustrating ME

In my last blog post “Sick of Not Being Able” I shared some of my frustration with ME/CFS plus a crappy virus which has made the last 2 months really difficult.  My husband has today blogged on the same tale from the healthy side of this partnership in “Big Ball of Frustration“.

It took me a long time, along with the regaining of some of my life/faculties/energy back from the virus, to realise that maybe when my husband grumbled at the cat for wanting a bit too much fuss, or wanting to go outside when  he’s only just come in, and so on … that perhaps it wasn’t about the cat at all.

It’s not often that Paul talks in public about our life with ME/CFS and it’s a great post – so I encourage you all to go meet my lovely husband.

Sick of Not Being Able

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 …

Everyone Gets Colds – So Why Am I Whining?

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).

The Lurgy is Back (Did It Ever Go Away?)

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.

Adrift in Time and Space

Tuesday felt like a Friday.  Wednesday I thought it was Tuesday.  Thursday I thought it was Wednesday.

Pancake Day passed me by.  I keep thinking I have missed Valentines and it is now late February.  Hang on – when did January end and why didn’t I notice?

 How to keep track of time and space:

– Sunday is slow 

– Monday comes after Sunday 

– Tuesday is CSI night

– Wednesday is bin day (though I sleep through the bin men now)

– Thursdays are funny (says BBC 2)

– Friday is … well Friday

– Saturday is the weekend for my honey … sport on the telly … maybe a curry

Hmm.  It doesn’t take much to throw the days out when it’s mainly based around the evening telly schedule and asking your hubbie “What day is it?” repeatedly.

Sometimes I think only taking a daily photo self portrait marks the passing of time for me – makes each day seem a day in it’s own right.  Otherwise I wouldn’t be sure if today was the one where I did such and such in the morning (or not).

As for relying on the rising and setting of the sun, the amount and intensity of daylight to feel the time of day or year … well one rainy day can throw that out too.  Even the trees are confused as to what season we’re in.  As long as it’s not just me eh?

Respite Gofer

Growler is letting his hair down this weekend.  Off to see his beloved Wales play rugby in the 6 Nations at home.  I love that he is going, I love that he gets to see his best mate and I love that he gets to be a normal welsh bloke for a day.

I am stopping with my dad overnight who has volunteered (with a smile) to be my Respite Gofer.  Which sounds much nicer than carer I reckon.

I admit to having some reservations about my sixty five year old father undertaking such tasks as fetching me drinks and making sure I take my medication … but (as a friend pointed out) he is probably delighted to be able to help.  He certainly sounds it.

So I hope it will be good for me.  Good to be able to admit some of the help I need to someone other than Growler and not to feel weak or hopeless just because I need assistance.  Plus the ability to share the load is a positive step.

So why do I feel nervous?  Something to do with feeling vulnerable? A fear of seeming lazy and/or too demanding? A worry I will do more to compensate and tire myself out?

Nick Clegg Makes My Heart Sing

The ME Association have published a letter from Liberal Democrat Leader, Nick Clegg MP, to his constituent about ME/CFS. 

Nick Clegg is critical of the NICE Guidelines and wants an independent scientific committee to oversee research into ME/CFS in this country.

What fabulous words from a politician:

Whilst I welcome the fact that NICE conducted an investigation into ME/CFS, I do understand and empathise with the concerns raised about the findings. The recommendation that patients with ME/CFS be treated using an ‘Activity Management Programme’ made up of Cognitive Behavioural Therapy and Graded Exercise Therapy does not follow the World Health Organisation guidelines which categorise ME as a neurological condition. In failing to recognise the bio-medical problems of ME sufferers, the NICE guidelines also fail to recognise the needs of ME sufferers.

To help address the unique challenges posed by a complex and poorly defined condition like ME, the Liberal Democrats believe in the establishment of an independent scientific committee to oversee all aspects of ME research. We would also like to see the government and the Medical Research Council work with ME sufferers and biomedical researchers in order to achieve a proper understanding of the condition, challenge unjust perceptions and consider the issue of research funding.” Read Nick Clegg’s full responseThank you Nick Clegg!  I could jump with joy and hug you – if I wasn’t so exhausted 😉

What a difference to the response I got from my local Conservative MP  last year when I asked for his support.

Admittedly I covered a lot of ground in my letter but I did ask him to read the report of, and lend his support to the findings of, the Parliamentary Inquiry into Myalgic Encephalomyelitis (ME) which was chaired by Dr. Ian Gibson.  Also to support bio-medical research into the condition (the Gibson Report found an inbalance towards psychosocial research funded for this condition by the Medical Research Council).

He forwarded my letter to a minister in the Department of Health and passed the buck entirely:

“I have now received a reply to my letter from the Department of Health regarding Myalgic Encephalomelitis/Chronic Fatigue Synrdrome.I am enclosing the Minister’s reply, which, as you will see, sets out the current situation with regard to this issue and comments on the points you raised.The website address, on which further information can be found, is also given in the letter.I think I should have another go at educating my MP and enlisting his support.  Best keep my letter short and simple next time I think.

My thanks, again, for having written on this very important issue.”

Ummm … and your position my elected representative?  Hmmm.

Activism is a sometimes bit too active for me and ME.

UPDATED: Nick Clegg’s letter was a response to a letter writing campaign from ME Association members


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