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Am I getting worse ?

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Its now Jan 2013 and not much has changed. In terms of my day to day life and CFS.
I actually wonder if my health has got a bit worse over the last 2 years. But its hard for me to be objective and measure this clearly.
My head is filled up thinking about work (property) issues and problems. And household problems. And money matters – household and business. And practical problems of so many things I need to do, but haven’t been able to :
eg :
get my hair cut (over 12 months now), visit to dentist (maybe over 2 years), go for breast screening, was due 3 years ago. (have had 3 appointments but wasn’t well enough for any of them).
With all this going on, plus my CFS neurological smptoms of “brain fog” and the “racing brain” (to name just two), this is probably why I haven’t got the ability to tell.
But I am getting more severe and longer-lasting symptoms some weeks. And it seems to  take me longer to recover from my “crashes” each time.
People with CFS and ME will know what I mean by crashes. But for the benefit of others – it is more commonly called post exertional fatigue or post exertional exhaustion. And its nothing like the natural tiredness, or exhaustion, people can feel after a long hard day. Or even after doing something out of the ordinary which been exhausting. Like a marathon run. This tiredness/fatigue/exhaustion is entirely natural and a normal healthy person usually just needs adequate rest to recover from it.
But with CFS and ME it is so much worse.
The level of exhaustion, and severity of  other symptoms, can be very bad indeed. And often totally out of all proportion to the amount of time and energy the person had used. On whatever they were doing. And to make it even harder to control – it can fluctuate from day to day, week to week, etc. (Making planning things often a real challenge, if not impossible at times.)
An example from my day to day life :
I find that I’m often exhausted now after having a shower and may need hours to recover. Not every time but too often.
By “exhausted” I mean – I am too weak and out of breath to be able to do much other than rest. My arms are sore and weak with the effort taken holding them up long enough to shampoo my hair. And my chest is pounding and heart racing. I took my pulse after a shower a while ago – it was 141. This is maybe 2 to 2.5  x  the average rate of a fitter person ?
Yet it was a simple, short and non-stressful activity, done slowly under no pressure.
This makes me wonder how high my heart rate goes when I feel under any major stress.
eg. In November 2012 when relations turned sour with a firm of tradesmen I had used for lots of work in my properties. And spent much money with them. One of the 2 partners turned into a total scumbag and actually threatened voilence against the properties. Saying he would “rip the fittings out of all of them”. Or words similar. And this in writing to me by text message. . . Then a 2nd text message to me confirming it was “a promise, not a threat” . Unbelievable.
Just to add here : I had an ongoing account with this firm and faithfully paid them every month as had been agreed. So I wasn’t in default to them in any way. But I had been raising my dissatisfaction with some of their work, and various broken promises with time-scales etc.
And they just turned nasty.
That week I was in bed almost the entire time – and my worst symptom was feeling like an elephant was sitting on my chest. That heavy, weighty feeling.
Just awful.
But I still had to deal with the situation as best I could – from my bed. And not very well admittedly.
Its all over now and these people are out of my life.
But I hate to think that this could have worsened my condition. As I was experiencing so many bad emotions that week – fear, anger, disbelief, frustration, despair. But anger more than anything.
However they say what doesn’t kill you makes you stronger.
I certainly hope so  . . .  !

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2 hours to type an email (brain fog etc)

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Another Lost Day . . .

Had an important email to do today & I really wanted to to sent early morning. But I failed to get up very early (around 10 am) so I went straight into my office from bed – still in my dressing gown.  With my breakfast – a banana and a cereal bar.  And water.
(I’m not daft enough to start on an empty tummy !)
For info – my “office” is the bedroom just next door to my actual bedroom.

But this email took me around 2 hours to do – even though it wasn’t all that long or that difficult. But for me some days – a simple thing like this can take ages. The effort of thinking it out and actually typing it out just got harder and harder the more time I spent on it. My head got sore very fast so this slowed me down anyway. Then my neck got stiff. Then the dratted brain fog descended – where it becomes so hard to think clearly at all. My thoughts seem to come in slow motion – as if they are trying to get thru treacle or something.
But I kept pushing on – as it really had to be done.

But I do know that “pushing on” like this does usually make my CFS worse.  So why did I do it you ask ?

Well if it hadn’t been sent – this would have led to a delay in getting some work started in an empty flat. This delay would = money problems (as no rent coming in but mortgage etc all need paying). This would then = more stress.  And more stress would = worse CFS symptoms.

A bit of a vicious circle.

By the time I finished this and did one more thing – almost 2.5 hours had passed. And I was feeling so unwell I had to go back to bed.   At 12.30 lunchtime.
And slept thru to 8 pm tonight !

Not ideal at all.
Anyway – I just really wanted to have a moan about it.  As this makes me fed up some days.

My Work Is Killing Me

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My Work Is Killing Me

Couldn’t get back to sleep – the racing brain again.

Thoughts rushing around at 100 miles an hour, lots of different work ideas, many contradicting each other, cannot decide what best to do over 2 o/s issues from yesterday, lots of other o/s problems rushing into my mind that need dealt with too, all important things (as I deal with Property – everything has a financial effect or knock-on and a financial penalty if ignored too long).
But I cannot focus on anything properly.

My concentration is shot to pieces – and its only 6.30 am. Not even out of bed yet or started my day.

And have the bad headache back again.
It started chewing away at my head as soon as my thoughts turned to my work. But don’t want to take painkillers just yet. (only 4 left in the house – but that’s a separate problem !)
So decided to type a post for my blog instead.
As my hope is that getting this out (of my head) will help release stress therefore help my damned CFS symptoms . . .

Don’t want to go into too much detail here about yesterday’s property problems – as it will be on the boring side. (And I plan to start another blog about this.)

But the No 1 item in my head is the unhelpfulness of the banks.

In particular a bank I spoke to on the phone last night for around 30 mins.  I mean we all know it’s the credit crunch – but honest to god – they could not be more difficult or awkward to deal with if they tried.
I was left feeling that I wished I hadn’t bothered as it turned out to be such a waste of my time and my energy. Both as valuable to me.
Still – I should be grateful that at least it wasn’t India.

I am sure this is the No 1 reason for so many small business going to the wall.

Anti-Depressants

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Why Happy Pills ?

I have been on anti-depressants for over 8 yrs.
My doc was always keen to give me these since I was diagnosed with CFS in 2002/2003 – after struggling on at work for at least 12 years before that.
With CFS or ME come a big list of physical problems which can make day to day life quite difficult.
Add to that almost no NHS medical help (none that works anyway), no financial help, no practical support, no emotional support.
Plus often boredom, impatience, or disinterest from people in general.

No wonder people get depressed !

Or in my case – more stressed-out than depressed.
If I didn’t “take the tablets” I would be in danger of bursting into tears of frustration and anger at stuff on a regular basis.
Almost every aspect of my life has got harder over the years. Especially the last 2 or so years.
Right now I seem to spend most of my life working – then exhausted – then sleeping.
Then more of the same . . .
There is very little time, space or energy for much else.
Not by choice – but because I work for myself and it takes me ages to get thru stuff some days with the CFS.
If I rest – the work problems and backlog gets worse. And everything has a “financial penalty” of some sort – as I deal with property.
If I just push on and on while feeling ill – I then end up “crashing” physically and mentally. And may end up in bed for a day (or even a few days) to recover. And while recovering – the work backlog and problems all get worse.
Its a vicious circle.
And I have “lost” so many days out of my life this way over the years.

Add to this the problems of trying to do normal daily activities like food shopping, cooking/preparing some dinner, laundry, housework, household finances, personal things like having a shower, or ironing clothes to wear.
These things can be major challenges at times when the CFS is bad – and often just can’t get done. Partly because no time left, but more often because no physical energy left over to do them.
Apart from the most important one – ie. Eating !
Mind you, at times I have even had to resort to just eating some biscuits or a slice of cheese for my dinner before collapsing into bed.
Not ideal.
– Then add to that the problems of having no money to spend, being overdrawn (or close), credit card debts rising, etc. And that’s just the household finance.
– The property finance is maybe 10 times as complicated and the credit crunch/recession of the last 5 years makes this all the more difficult. But I am still managing to keep it all afloat – though it feels like it is taking everything I have got at times.

But no choice here really.
As I can’t just “make it all go away”. And in this market and financial climate it isn’t possible just to sell it all off quickly – even if I wanted to.
I always look at the long picture – and keep telling myself it will be worth it in the long run.
And that I will get there.

My GP’s view on CFS and ME was that you will not get any financial help from the state – as you have to be “virtually in a coma” to qualify. So he would not help me at all. And this was years ago – around 2003.
NB. Can you imagine how angry I feel when I watch Benefit Cheats on TV . . . . Not that I would want to rely on benefits but it would have been nice just to have a little bit of financial help at times! Just to ease the strain.
I mean other people get benefits who don’t always need them, eg. Child Benefit. But thats another issue.

This is why I got into property.
My choices were very limited. And I had to do something, and something that would (ideally) produce some money in the long run.
CFS makes me unemployable – as I can only work when I can work. And I do work most days. But I can spend 8 hours at my desk and PC – but some days only get the equivalent of maybe 1 hours work done.

But I recognise I am lucky that it does fluctuate and I do have good spells too – and actually have a life. Maybe just not every day.

This has been a long post – and maybe sounds a bit “moany”. (sorry !)
But my goodness – it feels really good to get all this off my chest.

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