Tuesday, 20 November 2012

Six Degrees of Salutation

It is only since I have been ill for a prolonged amount of time that I have realised just how many times a day we say the words 'how are you?'. Three harmless little words that are uttered countless times to each person we encounter. In typical British stiff upper lip fashion the usual response is 'fine thanks' even if your wife has left you, the dog has died and a plane has just ploughed into your house. The question is seen as a mere formality of politeness and woe betide you should actually burden the inquirer with how you are actually doing.

Which leaves me in a bit of a quandary as the people I meet generally know I am not fine. In some cases they are actively seeking an update on how I am and in some cases they wish to find out in the minutest and most tiresome detail. My life and my health has now been reduced to a serious of soundbites as I try to work out how much information to give - too little and it feels like I am holding back, too much and I am sure they begin to wish they had never asked. From the point of view of my own sanity I do get fed up recounting my progress umpteen times a day. I long to be able to just say 'fine thanks' again but that would just be plain lying.

A curious thing I have noticed is that there are different levels of 'how are you?' with different motives and expectations. In the spirit of that ad with Kevin Bacon doing the rounds at the mo, I have whittled these down to just six levels which I shall share with you now.

1. Oblivious Nicety
Or good old fashioned 'I don't really care, I'm just being polite'. From people who haven't heard I'm ill which gives me a lovely option of either the standard response of 'fine thanks' or dropping the ME bomb into the conversation (as per my last blog post).

2. Tentative Enquiry
This is usually people who have heard a few whispers on the grapevine but don't properly know the scenario or are possibly frightened I shall break down in tears and pound the floor with my fists at life's unfairness. Again, I don't mind this so much as humans are curious creatures.

3. Concerned Loveliness
My favourite 'how are you' as it comes from genuinely kind people who have no agenda other than wishing me good health and a speedy recovery. Usually peppered with optimistic responses and pleas for me to 'take it easy' and 'look after yourself'. Standard response from my GP and OH advisor.

4. Pessimistic Concern
Not quite so great. Again, no agenda with this one but tends to make me feel like jumping off a cliff as typical responses run along the lines of 'how awful', 'that must be horrible for you' etc, etc. As though they are writing my eulogy and digging me a grave as they listen.

5. Concerned Interrogation
This is usually from people with a vested interest in my recovery - close family members, my boss. I understand this concern and the reasons for it and know I am expected to recount every little quirk and quibble of my body as well as give word for word accounts of latest doctor/OH appointment. It's not so bad now as I generally get to do this in my own time however when I was first ill it was a nightmare. The very moment I got back from an appointment I was awash with numerous phone calls all requiring in-depth analysis. Although well meaning, one of the symptoms I suffer is an inability to hold conversations when fatigued so this bombardment was a mentally draining ordeal. It was horrible and especially bad as I knew the reason it happened was because they cared about me so I felt I couldn't complain.

6.Aggressive Interrogation
The worst and most annoying of them all. I have saved this beauty for last. Luckily I rarely encounter this, which is just as well as I tend to want to smack the perpetrator in the chops. I have one person in particular in mind for this one, someone I don't know particularly well yet whenever I see her, she expects a full run-down and keeps questioning me along the lines of 'so when do you think you'll be back at work?' If she were my boss, I might be able to understand it but she isn't. Perhaps she's just nosey. It is almost as if she thinks she has more right to my medical history than my own parents. I am sure really this is as well meaning as the rest but I find it incredibly rude and intrusive and sometimes I want to tell her to bog off. I suspect this may be good preparation for my upcoming ATOS assessment.

In fact, overall I tend to dread most of these as there are only so many ways you can say 'better than I was but not as good as I would like to be' in a witty and interesting manner. Sometimes I just feel like getting a t-shirt printed with 'Still not well so don't even ask' and just pointing to it with a wry smile. But mostly I carry on regardless. I field all enquiries with what I hope is good grace - even from my nemesis (who surely should think of a career in MI5) as I know deep down that it is ungrateful of me to have such a dislike of 'how are you?'. I know deep down that every person that asks is a person who cares, and the alternative is too depressing to even contemplate because it would mean that no-one cared and that would be the worst thing of all.

Monday, 12 November 2012

I am Spartacus

I have been inspired this week by blogs of fellow sufferers of PVFS/ME/CFS. Rather than have all these thoughts swirling round my noggin I have decided to share some of them with you. Aren't you lucky? Another impetus is the dawning realisation that this illness is something that is not just going to sneak away and that I am going to have to adapt and enrich my life in order to best cope with it. For the past year I have at times felt embarrassed and ashamed to be diagnosed with an illness that many do not recognise and most do not understand. This may sound odd but it has taken me some time to allow myself to actually be ill instead of feeling guilty or responsible for not being fit, healthy and able.

Some of this is because I am and always have been too hard on myself but some of the blame lies at the feet of the medical profession, who seem to think if I just keep pushing myself that bit further I'll be better. Having had a year of pushing myself to the brink of exhaustion daily in order to try and force myself back to full health, I now know this is not the way forward. I have tried my best to do as instructed but it has NOT made me well. What it has done is make me feel inferior and inadequate, worried that I am not doing enough and that I am to blame for my poor health.

To these feelings of worthlessness I say NO MORE! I am ill and it is not my fault. I have a very real and life-changing condition and from now on I am going to do my best to deal with it on my terms. This change in my attitude has been developing over the last couple of months and I can see a difference in the way I deal with meeting people I haven't seen for ages. Previously, the conversation would go a little like this:

Me: Oh hi, haven't seen you for ages! How are you?
They: Good thanks, how are you?
Me: Ohhhhh, you know....... (awkward pause). So, what have you been up to? etc, etc.

In the last few weeks, the conversation has concluded differently:

Me: Oh hi, haven't seen you for ages! How are you?
They: Good thanks, how are you?
Me: Not so good. I've been signed off work for a year with Post Viral Fatigue. It's pretty rubbish as I get tired really easily and can only do things for a short period of time. Still, could be worse. At least I can leave the house these days (laughs heartily whilst friend looks on with horror). So, what have you been up to?
They: Gosh, how awful for you etc, etc.

Sometimes it's easier just to say I have ME, especially as no-one can really tell me the difference between ME and PVFS. They both have the same symptoms and everyone has heard of ME so it requires less explanation. Sometimes I even get a teeny bit of pleasure from knowing I'm about to drop a metaphorical bomb into the conversation. Hey - don't judge me, I don't get out much and waiting gleefully to see which particular facial expression I'll be met with is some small form of enjoyment in my lacklustre world.

So back to the purpose of this post - I would like to take this opportunity to announce to the world (or the handful of spammers who might actually read this) the following.....

My name is Charlotte. I have ME. It sucks but I'm learning to deal with it.

Wednesday, 7 November 2012

A lot can happen in a year.......

but then again, a whole lot of nothing can go on too.

So here I find myself attempting a blog again almost a year after my last post. It would be great to tell you how my life has suddenly become wonderful and amazing, with tales of good health and hearty exploits, but it hasn't. Bah.

A potted history of the last 12 months goes as follows:

I found myself still ill in the new year after 3 months of being a virtual recluse and barely leaving the house. Following the advice of both Doctor and Occupational Health (OH), I started to visit the school where I work(ed) in January to 'build up my stamina' for my supposed eventual return. Although not actually able to do any teaching, just being able to spend time with my lovely colleagues and take part in the random merriment of classroom life was great. It's amazing how enjoyable sharpening pencils and laminating display headings is when you've been all but housebound for what seemed like eons. Over the course of the year I was able to gradually build up from an hour every other day to a whopping 4.5 hours every day which all seemed quite positive. The summer holidays arrived, and being able to do things at my own pace and in snippets of sunshine (amidst the biblical downpours) meant that for the first time since I became ill I was able to feel almost normal. The warmer temperatures had also reduced my arthritic aches and pains to a tiny niggle and I was hopeful that I may actually get my life back to normal.

Then came September and the party ended.

Foolishly I thought I could rock up to school and start back at 4.5 hours each day. By the third day I was unable to leave the house and was confined to the sofa. On the advice of OH I cut my hours and reduced my visits back to every other day. The idea was to build up my hours again and then try building up the number of days. Then, as the weather and temperatures took a turn towards the arctic my aches and pains came back. Bum.

September truly was a horrible month and thankfully I have managed to claw myself back to a better place. And here I am in November, having had more blood tests (all normal) and waiting for a referral to a local clinic for CFS. I have been managing  3 hour visits to school every other day and today I pushed myself to 4 hours for the first time since July. I have an OH appointment next week but after a year of being fobbed off, given conflicting advice and generally left to fester by both OH and my doctor I have finally figured out I am going to have to do this my way. The medical profession don't seem to have a clue about this sort of illness and what is worse, they seem in no particular hurry to find out how to help sufferers like me.

So with all the serious stuff out of the way from now on I shall try to be more regular with my blogging. I hope to focus less on being ill and more on all the random thoughts and schemes I have now I have all this time to ponder and pontificate. The new, improved me. Perhaps it will have a knock-on effect with my health. Here's hoping!