Tuesday, 18 December 2012

We wish you a ME Christmas.........

A Tale of three Christmases

The Christmas before last seems like a lifetime ago now. It was my best Christmas ever. When I woke up on Christmas morning there was still several inches of snow on the ground. Everywhere was sparkly, shiny and looked like the picture on a Christmas card. Before we left to spend the day with my boyfriend's family, we opened our presents to each other. His final present to me turned out to be an engagement ring! Add to that my family coming to visit the day after Boxing Day and me cooking them a Christmas Dinner for the first time, all in all it was the perfect Christmas. I finally felt grown-up - here I was in my own home, engaged, cooking my parents a nice meal. Things couldn't get any better.

Load of Baubles
Fast forward a year to last Christmas and things were very different. I had been ill since getting back from Honeymoon in August. Only recently diagnosed with Post Viral Fatigue, everyone (including myself) was still expecting me to suddenly be well and back to work at any moment. Having had no advice from the medical profession other than to rest, I didn't really understand the nature of my illness. Even though I was too ill to work, I thought I'd be fine over Christmas. After all, spending time eating, drinking, watching TV and being with family isn't tiring is it?

Wrong, wrong and even more wrong.

Whatever possessed me to think I could go out with friends on Christmas Eve, travel to my parents Christmas Morning then travel back to my husband's parents on Boxing Day I still can't fathom. Even in full health that would be a push. In hindsight I guess I just didn't want to let anyone down. Plus after 4 months or so of being virtually housebound, I was so eager for a bit of excitement I think I got a tad carried away.

So on to this year. I have learnt my lesson well and have come to understand my illness and its limitations. I now know from my own experiences and research into ME that spending time with other people is mentally draining and just as tiring as physical exercise. I know I need to pace myself and so have allowed at least a day to recover in between functions. I am prepared to commandeer bedrooms and sofas in order to have some quiet time to rest away from the hubbub of family and friends. I have also realised that in many ways, this slower pace has actually paved the way for a better Christmas.

Ye Merry Christmas jumper
In the past, the run up to Christmas has been frantic. I worked in retail for several years then became a teacher so throughout my working life I had always seen all the preparations as super stressful and not enjoyable at all. This year, with no expectations of being well enough to work I have had plenty of time to relax and enjoy things. This year I have been getting rather excited by it all and even bought a Christmas jumper!

Shopping in town has been crossed off the list - large bustling environments and me do not mix well. Instead I have shopped online for some things, others I have made. Financial constraints due to no longer earning any money has made me get creative and having plenty of time alone at home means I have been able to spend the last few months making cards and sewing gifts for friends and family. These gifts may not have cost as much but they are made with love and care. I have had each person in mind as I have been making their gift, unlike previous years of panic buying the usual mass-produced twaddle that probably gets sent straight to the charity shop. And even though my new healthy diet and alcohol intolerance means an end to stuffing my face with all the food and drink within a 10 mile radius, the upside is I have lost the best part of a stone in a couple of months and can now actually fit back into clothes I haven't worn for ages.

Who knew potato printing was so theraputic?

All in all, ME may have forced me to change my Christmas habits, much as it has forced me to change my entire life, yet at the same time it has brought me many positives and one of those is to be excited about Christmas again. As long as I make sure I pace myself and listen to my body I know there's a good chance it will be a very merry ME Christmas indeed.

Now, if I could just win the lottery.............

Saturday, 1 December 2012

The recipe for ME

The more I read about ME, the more I realise what a complex and bewildering illness it is. The possible symptoms are many and varied, with each sufferer experiencing their own personal concoction in differing amounts and intensities. It's a bit like looking for a recipe online - each cookery website has their own version for the same dish, just with slightly differing ingredients and amounts they recommend you use.

This brings me to my own version of ME. I take comfort in the fact that the majority of my symptoms are shared by others which helps me to remember I am not going mad or about to die from some undiscovered tropical disease. However, there always seems to be something new and crazy happening to my body or my brain and I never cease to be surprised by the exciting new methods my immune system finds to torment me! With this in mind, I have been thinking of what my own particular recipe would consist of. I think it might go a little like this.......

How to make Post Viral Fatigue

Take one nasty chest infection and mix thoroughly with an equal amount of sinus infection.
Add a generous helping of muscle aches and arthritis.
Leave for 1 month whilst attempting to carry on with normal life.

Once mixture has culminated in total physical collapse, you are ready to add the next ingredients.

Add the following:
A dash of swelling,
Recurring cough and phlegm,
One pinch of hot flushes,
A soupcon of fever,
An inability to concentrate,
A scattering of blurred vision,
A large quantity of tension headaches,
Disturbed sleep patterns,
And the main ingredient - several bucket loads of fatigue.*

*Note - it is important not to use any normal tiredness or sleepiness. You must make sure you have the finest quality, Grade A fatigue that will render you unable to even hold a conversation properly, let alone leave the sofa or bed. 

Make sure the ingredients are combined well and let mixture simmer for the next year.  At random intervals just as things seem to be settling, stir all the ingredients up a bit to get them all bubbling up again.

Whilst this is cooking away nicely, you can use the time to prepare your side dish:
Take a large bunch of irritable bowels and several spoonfuls of Candida.
Add some anxiety, depression and weight gain to taste and toss together with several good glugs of cabin fever.

As September approaches and your dish looks like it's ready to serve, suddenly reduce the heat and add several gallons of rainwater. You will notice all the ingredients may attempt to rise to the surface again. If this happens you will have to keep on simmering and stirring until everything is completely done. This could take months, even years so prepare yourself for the long haul. In the mean time you can thankfully finish off your side dish, perhaps leaving the way clear for you to make another with some more exciting ingredients such as nausea and heartburn.

There are so many little aspects to my illness that I might have left a few 'ingredients' off but you get the general idea. I think it goes without saying that this recipe is definitely one I hope you don't try at home!

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!