Uncategorized | Your Jaw Never Gets Tired

More of those comments

September 22, 2012

Anne Uncategorized children, comments, exercise, frustration, ignorance, phone calls, things People Say, tiredness Leave a comment

Oh God, the comments from people . . .

Have you no hobbies to fill your day ?

What – on top of being a Landlady and trying to keep a property portfolio (albeit a small one) afloat thru the credit crunch & recession ? And the daily struggle with household tasks? I‘m just grateful if I have any energy left over to eat my dinner or watch TV some days.

Your lucky you don’t have children – as you would just have to get on with it.

How would that work then?
Have you tried just getting on with it when you don’t have enough strength left to even stir a cup of tea ? But even more seriously – the whole issue of people with CFS or ME not managing with their children can cause much guilt or heartbreak. Just read the book Shattered by Lynn Michell – there is a heart-rending section about this in it.

Nobody can be that tired (that they can’t make a phone call)

Want to bet ?
I rely on email a lot because of my CFS – as you can take as long as you need (to think) plus stop for many breaks. You can’t do that during a phone call – the person would just hang up on you.

I know you have your issues

OMG – my “issues” – what are these then ?
From a friend I hadn’t seen for abbout 18 months. Did you maybe mean to say how are you and how are you getting on . . . ? No ? Oh well .

You must keep exercising – no matter how bad it makes you feel.

Unbelievably this was from the GP I kept going back to for years and years before I got diagnosed. She was very abrupt. In fact I’m not sure she was actually a GP – just somebody doing a very bad impersonation of one . . .

Let me know when you will be ok to go out

How will I know ? Understand this one if from people who don’t really know me – or anything about CFS. But from other people . . . A bit frustrating.

She gets a bit tired at times.

This from my husband trying to explain it to people for me – and failing dismally . . . ! A major cause of much stress and rows over the years – but that’s another story.

Just let me know in advance if you cannot make it

Again – how will I know ?

The CFS is not ME row

September 21, 2012

Anne Uncategorized diagnosis, fatigue, ME Charities, ME/CFS, medical professionals, tests, twitter 12 Comments

Before I joined Twitter I didn’t realise that there was quite a row going on over CFS and ME.

Now that I’ve been on twitter for a while – I have seen so many tweets on this subject.
Eg :
Your CFS isn’t as bad as our ME
We have ME and its more serious than your CFS
If you had ME and got better – then it wasn’t really ME in the first place. And maybe “just” CFS.

Etc Etc etc . . .

And I just want to say here – I am sick to the back teeth of all this.

My diagnosis was CFS.

It was what the GP called it on the day – after the other stuff had been ruled out.
It took a struggle of more than 12 years to finally get a diagnosis at all.
I have a big list of symptoms to deal with – luckily not all at the same time.
(I listed them in an earlier post today for info.)
Frankly I don’t care if it is called CFS or ME. All I know is – it has been a very big problem in my life, for a very long time.
I also know I am not anything near as bad as many out there – who have a more severe form of CFS or ME.
I have met people with CFS who have been much much worse than me.
And I have met people with ME who were less affected and having a fuller life.
Some people with CFS have had loads of tests – some just a few.
Some with ME have had extensive tests – but also, some just a few.

I don’t think there is any “black & white” with this.

I do understand the reasoning for many people and charities wanting the name CFS scrapped – and I agree it does nothing to convey the seriousness of the condition. As people just hear the word “fatigue” and mentally dismiss it as not very important.

But I do feel that we should all be on the same side.
Whether CFS or ME.
I mean they are both bloody awful at times.

Surely ?

Any thoughts/opinions/comments very welcome.

My CFS Symptoms

September 21, 2012

Anne Uncategorized brain fog, breathless, chest pain, concentration, exhaustion, headaches, heart rate, IBS, ME/CFS, muscle weakness, pain, symptoms 2 Comments

I decided to list my symptoms with CFS. Not for fun (!) but for various reasons :

I’m sure there people out there who still assume Chronic Fatigue Syndrome just means that we get a bit tired. And get tired more often than average.
And therefore they regard it as not very serious.
But (unfortunately) there is much more to it – as you can see from this list.

It is rather a long list – and I realise that I have some symptoms now that I didn’t have eg. 6 years ago. I feel that the longer you have CFS and/or the longer you had to go before getting diagnosed – the more it may become “entrenched” or “ingrained” in you.
And all the harder to get rid of.
NB. This is just my personal opinion and not based on any medical facts.

But I also know I am very lucky in that my symptoms do fluctuate and I am not hit anything as badly as some who are classed as having severe CFS or very severe CFS. Or severe ME & very severe ME.
Plus in making this list I noticed that some symptoms I had quite badly years ago – I rarely get now, eg. IBS. (= good)
But on the other side of the coin I have developed other new symptoms in recent years, eg. 21 – 23. (= bad)

Anyway – here they are :

1) Flu-like exhaustion (no strength or power left)
2) Muscle weakness
3) Muscle pain (esp neck, shoulders, upper & middle back)
4) Stiff neck
5) Sore/stiff right arm and wrist
6) Headaches (more often & severe last year or so)
7) Weakness & lack of grip in right hand
8) Out of breath easy
9) Chest tightness or heaviness
10) Heart pounding/racing
(Pulse Rate always high : eg. lowest usually 80 – if feel well and am very rested. Can be much higher – eg. 141 the other day after having a shower.)
11) Blurred vision
12) Always thirsty
13) Memory bad
14) Often forget point I’m talking about mid-sentence
15) Find it hard to be concise – often go off on tangents
16) Cannot find the right words at times
17) Poor concentration – cannot focus on 1 thing at a time
18) Racing thoughts – all jumbled up/so many things that need doing/
19) Brain Fog – thoughts very slow, as if they cannot get thru,
20) Eyes get tired very easy
21) Cannot tolerate bright light some days (eg. from TV or PC screen)
22) Cannot tolerate noise some days or sudden change in noise levels (eg. different sound levels on diff TV channels)
23) Cannot tolerate moving images some days (eg. on TV)
24) Prone to getting cold easily (especially if overdue food)
25) IBS
26) Excessive sleeping some days

2 hours to type an email (brain fog etc)

September 12, 2012

Anne Uncategorized brain fog, concentration, emails, financial, My Life Today, PEM, work 1 Comment

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.

A Good Weekend

September 9, 2012

Anne Uncategorized fun Things, Glasgow, nature, outdoors, relaxing, TV, walking, wine Leave a comment

Well this weekend was good.

Not that I did anything mega exciting but it was the 1st time I had been out then house properly during the daytime for 3 weeks !! Did some walking and got fresh air.
3 weeks – how does this happen you may ask ?
Well in CFS or ME land it is unfortunately all too common at times. And the last few weeks have been a bit difficult.
But won’t dwell on that now.

My husband came to take me out both days and did all the driving around.

We did some perhaps dull things like go to B & Q, and shops etc – but even this I enjoyed (up to a point. . . ) as I was glad to get out.

Today was the best of the 2 days.

We had a nice long, slow, peaceful walk thru Kelvingrove Park in Glasgow’s West End – and even around some of the streets in what is called the Park Area just into the West End.
It is full of the type of properties I love – old traditional houses and flats from victorian times. All so distinctive – the lovely detail in the buildings and the big windows. I find it relaxing just looking at them.
Then we found a cafe within the park and had a nice coffee and a break.
We did other things too but the time in the park I found the most rejuvenating – physically and mentally.

Its now evening and I’m a bit tired.
But its more like a natural tiredness – rather than that awful CFS/ME tiredness which really is beyond description.
Hubby is still here – and we’re just going to settle down and watch some TV now.
And will have a nice glass of chilled pinot grigio wine.

My Work Is Killing Me

September 5, 2012

Anne Uncategorized banks, call centres, concentration, credit crunch, financial, headaches, racing thoughts, stress, work 4 Comments

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.

Sat night with Hubby

September 1, 2012

Anne Uncategorized enjoy, family, food, fun Things, relaxing, TV Leave a comment

Telly & Wine

Just a short fun post – to try to add some balance after all my moany posts.

Tonight my husband will be coming over – we have been living apart since January (which is another story for another post sometime . . . ).

Anyway – the plan is to just slouch & watch telly. Maybe some repeats of Downton Abbey that I have recorded. We both love it.

Will have some dinner – that he may cook with a bit of luck. And most def some chilled white wine – which will banish all thoughts of tenants, o/s rents, repairs . . blah blah blah . . out of my mind till Monday.
Looking forward to that and just chilling out.

Brain Fog & Racing Thoughts

September 1, 2012

Anne Uncategorized brain fog, concentration, electro sensitivity, headaches, hyper sensitivity, ME/CFS, neurological, phone calls, racing thoughts, symptoms Leave a comment

A Wasted Friday

I am glad its Saturday.

Yesterday was a rubbish unproductive day!
Now I don’t obsessively measure my days in terms of “productiveness” in the way that I remember employers doing. But it was a write-off.
But unfortunately it hasn’t been written off in my mind yet and I’m still fretting about it.

This is why I’m adding it to my blog at this early hour on a Sat morning. An early hour for me at the weekend but my sleep pattern is “gubbed”.

Anyway the very poor summary of my work yesterday consisted of :

a) One letter which took me a ridiculous 2 hours to type ! Yes – that was it.
(I changed the content and tone of it so many times.)
b) Plus a lot of thinking and mulling over property & tenant problems – but no actual “doing”. About 3 hours spent (wasted?) here.

All the usual CFS or ME problems were present.
But I seem to be finding that the “neuro-type” symptoms have been getting worse and worse for some time now. Certainly a few years at the least. And even more so over last 12 months – really hindering me.

For the benefit of non CFS/ME sufferers : by neuro-type symptoms I mean :

Brain Fog :
Cannot think clearly, if at all. A bit like your thoughts are trying to get thru mud or treacle. And it is all so very very slow . . . Plus trying to find the right words can be hard too. Or to finish the point you are trying to make. (Or even work out what the point is . . ) Forgetting the point of what I was talking about mid-sentence is common. A total nightmare if in a phone call – but not easy either when a letter or email.

Hyper & Racing Brain :
Dozens of thoughts racing about at 100 miles an hour, conflicting thoughts, decisions, changing mind, more frantic thinking, cannot decide what best to do, or what to do 1st, or in what order, etc. Just unable to think straight or focus or concentrate.

Out of these 2 symptoms this 2nd one for me is probably the more exhausting as my brain feels as if it has run a marathon afterwards. If that makes sense?
Often I still have to later change what I have done or decided – as it can seem obvious (when rested) that I have made a bad decision. Or I have just confused everyone – including myself !

Headaches:

The headaches are so bad too. They come often with quite an intensity.

Hyper Sensitivity:

Plus I find more and more that I cannot tolerate even looking at a PC screen for long. Or a TV screen. I seem to be getting more and more sensitive to colour, moving images on TV, sound, etc.
Which isn’t helpful at all.

Anyway by 5pm I just had to give in – and took painkillers and went to lie down in my bedroom next door to my office. With the black-out blind pulled fully down. Had planned to get up after a few hours, but ended up getting into bed and staying there for 10 hours – until 3 am.
I was just too exhausted to get up before then and my brain felt burned-out as I was still thinking about so much stuff while in bed.
But hunger finally got me up and went down to kitchen for something to eat.

Not the way I would choose to spend a Friday night.

Just realised this is another long post. (Have no idea how I manage on Twitter . . .)
And it is rather moany again. I admit I was feeling a bit sorry for myself. Although now that I’ve typed it I feel much happier.

Note To Myself :
Some Aims : do shorter posts and more fun ones !

This Week So Far

August 23, 2012

Anne Uncategorized letting agents, My Life Today, property, pussycats, symptoms, work 1 Comment

It has been quite a difficult week so far – and now Thurs morning.

Am doing my best to keep dealing with my Property stuff and keep everything afloat. Its such a battle some days – most days actually. But its almost impossible to get a decent rest from it to help my CFS. Because if I take time off – the work backlog increases. And I can miss certain deadlines for things that need to be done. This then may cause a financial loss or penalty of some sort – which then gives me more work.

And what does this result in ?
More stress = worse CFS symptoms.

Anyway – I just want to have a wee moan about it here. As it saves me inflicting my moans and tales of woe on friends face to face who are kind of trapped into listening at times.

Yesterday was a typical rubbish day.

Was in bed exhausted all morning and afternoon.
This was following a bout of hoovering the day before (Tues). Well not much of a “bout” – just the living room. Plus I used my Turbo Tiger (a hand-held vacuum cleaner – not a sex toy I should add . . ! ) to vacuum the sofas. But it was very hard work.

I knew this would take it out of me but it just had to be done. I have 2 visiting pussy cats who have been in a lot recently – they are gorgeous. But the build-up of fur was making me very sniffy and sneezy. I love cats but this is one of the reasons I don’t have any of my own. But I like to have a visiting cat – in this case 2.

In the past my husband would have done any hovering needed. But we have been living apart since Jan this year. (Which is another story.)

Anyway – I didn’t manage to do any work until the evening. And rather pathetically this consisted of just 2 emails . . .

I won’t go into much detail as it really is very boring.
But just to say it concerned a flat with a recurring damp problem, a letting agent who I thought were helping me to get this sorted but have just dumped it back onto me, and a local Council (who are also factors for the building) who do F**k all when it comes to vital communal repairs to things like drains, gutters etc. No matter how many times you ask them. And a tenant who is now leaving – as nobody can get this sorted.

Probably because of the history with this – I started to feel ill very quickly when trying to think out the wording of the emails. I was trying to stay focused but kept thinking about the general imcompetence and unhelpfulness of the Council and was feeling angry and frustrated by it all. Plus the letting agent who should be helping me were now increasing my problems (another story . . ).
As well as the horrible tiredness/weakness – I got a nasty headache very fast, plus stiff neck, sore shoulder and upper back. My concentration became poor very fast and I was losing track of my thoughts and struggling to focus on what I was doing.
A simple thing will take me ages when feeling like this.

Anyway I pushed on to get the emails done – and it took me 2 hours. Even with the slightly complex history – it should take maybe 20-30 mins tops.
No wonder I have a backlog.

And by the end of this my headache was so bad I had to go and lie down (again) with the light off in darkness. And take painkillers obviously. My eyes were so tired and strained too. I couldn’t even tolerate any light.

Eventually got up again and had something to eat. Then back to bed for the night.
But didn’t even manage to do any “normal” things – like get even washed and dressed.

But I will get there . . .

Things People Say (no legs comment)

August 21, 2012

Anne Uncategorized ignorance, lazy, things People Say, upset Leave a comment

“In my day you didn’t stay off your work unless you had no legs ”.

This was a comment made by a close relative of my husband’s. It was made loudly in front me, but to another person – a neighbour if I remember right. But I tend to think it was for my benefit . . . as I was the only person in the room who was off work.
Actually the exact comment was something like : “unless you had both legs amputated” , or “unless you had broken both legs” – but you get the gist of it.
At the time I was working with Ntl but was off sick. Just to add – I only got paid “sick pay” for 2 months (full pay) and 2 months (half pay). If I had managed to hold on for 1 more month before caving in and having to go off sick, my entitlement would have been better as it improved with each year employed with the company. But “holding on” anymore just wasn‘t possible. I had got to the stage where I couldn’t hold on any more.
No choice.

This type of comment makes me upset for many reasons :

a) All the years I had spent working full-time (approx 21yrs)
b) All the studying over the years while working full time. (approx 6yrs) To get professional qualifications in insurance and financial advice & compliance work. I had been keen to learn and get on.
c) All the years I had worked in various 2nd jobs (pub jobs) at night to save up. (maybe 3 or 4 yrs) For 3 or even 4 nights a week on top of my full-time job.

This comment implied that I was some sort of sciver and work-shy. And maybe happy to be at home while being paid ? (even though I either wasn’t paid much – or nothing at all if sick pay had ceased at the time).

It funny but this must be from around 2002/2003 – and I’m still trying to defend myself after all these years. After 10 years. It just shows how this sort of thing really takes root in your memory.

Your Jaw Never Gets Tired

More of those comments

The CFS is not ME row

My CFS Symptoms

2 hours to type an email (brain fog etc)

A Good Weekend

My Work Is Killing Me

Sat night with Hubby

Brain Fog & Racing Thoughts

This Week So Far

Things People Say (no legs comment)

Anne

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