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The Last 7 Months

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Thought I would give a brief update on how I’m doing.

My 2nd last post (The Lonely Landlady) was a very negative sounding one, but it was simply a true reflection of my situation and health at that time. Nothing was exaggerated.
It wasn’t a negative thing for me – as writing the post made me feel slightly better.

Its now July 2013.
The last 7 or 8 months may have been the worst I can remember in all my years with CFS. As I have had to spend such a large amount of this time in bed. Maybe 85 – 90% – but not really sure.

So many bloody symptoms to handle and manage, and try to cope with.
I choose not to say things like “battle with” or “fight” because phrases like this just make me feel even more exhausted.
Not just the symptoms – but the frequency and severity of them.

The worst problems (symptoms) have been :

The Exhaustion :
Both physical & mental. Just dreadful.

Post-exertion fatigue/exhaustion :
Very bad, often after doing the slightest thing. One of the hardest, most difficult things to manage with CFS.
It is always there.

Headaches :
Crippling at times.
Spending £50 a month on different medications. Cheap things like paracetomal lost effect. One of the few things that helped was Panadol Extra. And Solpadeine Max – which I need to use very carefully.
(Why did I not get a doctor’s prescription ? Because I wasn’t well enough to get to the doctor. Or even consider a phone consultation most of the time.)

“Brain Fog” :
This has been terrible, and trying to work thru it (as I often had to) would trigger the headaches.
Brain fog is a term used to cover a multitude of cognitive problems in CFS and ME.
Put more simply – much of the time I feel as though my brain is totally fucked (sorry for language).

Chest Pain :
More of a tightness, heavy weight, a feeling of compression on the chest.
This came on (or got bad) in November 2012 following a very stressful incident (work-wise). I think I mentioned this in a previous blogpost.
This was a very disabling symptom as it was there so much of the time. Would ease a bit with bed rest, but then hit again with sometimes the slightest exertion.
Why not go to the doctor ?
1) I wasn’t well enough
2) It wasn’t unusual to me. This was the thing (symptom) that finally pushed me over the edge in Nov 1997 – and I resigned from a financial job I had held for over 19 years.
3) I suspected (hoped) it would improve with rest and trying to avoid stress.

– – – – –

This update is cautiously optimistic.

As I seem to be getting better – even if just very slightly. And hopefully starting to get out of this relapse or major crash – or whatever it would be called.

My reason for saying this ?

Because for the last month or so – the chest pains have eased off.
At last.
Thank god . . . . !

Also the headaches have been less severe. And even respond to paracetomal again some days.

Many days it can still be 2 steps forward and 1 step back. And often it may be 1 step forward and 2 back.
But overall – I feel a slight improvement.

Please may it continue so I can start to have a better life again.
Because my life has been very small this year.
The most reduced I can remember.

But I am quite encouraged that the chest pains have eased.
I know I need to go slow, be careful, etc etc. As there are still so many symptoms (problems) to manage and juggle day to day.

But I am optimistic.

And it’s Friday after all . . . . .

Boom & Bust

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Does anyone else feel their lives are a continual round of energy highs and lows ?
Or the “boom and bust” as its often known as.
Its so frustrating isn’t it ?

Last weekend (Sat evening) I went to a party. And my last post was about this.
To give myself the best possible chance of being ok for this party, I had to rest as much as possible for a few days before it.
In effect I took 2 days off work.

This paid off in and I made it to the party and had a really good night.
The next day was “lost” because of the very late night (5 am) and the amount of wine consumed ! But that was ok. To be expected really and I didn’t mind this at all.
It was a 50 th party, and not an every-day event.

What was annoying was the awful energy “crash” that followed.
The party was on Sat, the expected hangover on Sunday – just a headache and tired. And the headache was a normal, to be expected, headache. And the tiredness also the normal, to be expected, tiredness when you don’t get to bed until 5.30 am.
So that was ok. An accepted price to pay in my eyes.

But on Monday the slump, crash, payback, or whatever you want to call it set in.
More formally known as post-exertional exhaustion/fatigue/malaise . . . .
And for the benefit of any non-sufferers of CFS or ME reading – this is a type of tiredness or exhaustion that is not natural or comparable at all.
It is horrible.

Being Easter Monday, I didn’t stress or beat myself up over the fact I would likely lose the whole day, and get no work done. (Not that I would really want to work on a bank holiday, but remember I had avoided work since Wed of the week before.)
Anyway I think this helped me avoid the worst of the CFS headaches that often come on when I’m under stress.

But the tiredness . . .
It was much worse, totally different from the previous day. I felt like I was wearing pyjamas made of lead. I don’t actually wear pyjamas but you get the idea . . . Body powerless, weighed down. And my head/brain felt like I had been drugged.
Totally incapable of anything.
This lasted all thru Monday and affected most of Tuesday too.

By Wed I had to get some work done – as it had been left for a whole week by then.
And so – back into the vicious circle of the mini boom and busts !

Oh well – nobody said it would be easy, did they ?
In the opening line of one of my favourite books The Road Less Travelled by M Scott Peck, he states :

” Life Is Difficult ”

But I did enjoy the party and lasted an amazing 8 hours at it . . .
Ha !

Should Life Be This Hard ?

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I had hoped (and wanted) to write posts for my blog more often. But it has been impossible recently.
Every aspect of my life feels so hard right now, and nothing is getting any easier. And I have been trying so hard for such a long time now.
Feels like forever.

I have tried to tell myself there will be light at the end of the tunnel – and that its just a very long tunnel.

But the harder I try, the more I push on, the more I try to think of better ways to manage my work, to try and stop the backlog spiralling out of all control, the worse my health seems to get. To put more specifically, my CFS symptoms get more severe, more frequent and last longer.
And it takes me longer to recover each time.
I know this is the same old stuff I keep whining on about.
I do know . . .

But I just dont know what to do about it.

My husband is also very exhausted by his work. He is 50 and does a job that is physically gruelling much of the time. And mentally stressful.
He is looking more worn out all the time. And more tired and worried. He is usually upbeat but will sometimes say things like ” should life be this hard ? ”

Its a good question. Because we are having very little life at all. For quite a long time now.

He has been battling all his work stresses with medication for a few years now – and has recently had the dose increased to a higher level.
Then add to that the fact that he has to do so much in the house on top of this – his life is not easy either.
Not one bit.
eg. Today he was up at 6.30 am and got home at 7.30 pm – physically exhausted after his day at work. And had to get straight into bed for a few hours. For him to do this means he is feeling quite bad indeed. (He often has to take painkillers too on days when he comes home with leg and hip pain. And stress headaches.)
I had been in bed almost the entire day again as my CFS is very bad at the moment. (I am not going to list all the symptoms as it would take too long.) But this is getting more and more frequent.

Neither of us has eaten much food all day. In his case – no time. In my case – not enough energy to go down to kitchen to get anything. Not unusual.
I eat a banana at 9am.
Since then I have just eaten a variety of non-perishable things I try to keep in the bedroom for days like these, eg. cereal bars, babybel mini cheeses, and biscuits. And water.

Everything is starting to feel impossible.

Today I tried to make a simple list of groceries needed – hubby was going to do a shopping tonight. (I haven’t even been able to do the online shopping recently.) And I was unable to even complete that. Just didnt have enough physical or mental energy.
So he is away to Tesco now with my half-written list. He was too tired himself to check it or add things to it.
And it is now 11 pm at night.

Neither of us has eaten any proper food, other than biscuits, for over 10 hrs (him) and 14 hrs (me). I asked him to also buy something we can eat right away when he comes back. Needing no cooking, or even heating up. As the lack of food for so many hours was making me even weaker. And wasn’t helping him much either.

Come the weekend he usually recovers.
But I often dont.
And may have to sleep thru much of it just to be able to do some work again by Monday.

Not sure if I’ve said this before. But I dont have any more work than anyone else.
The main reason I have my ” backlog mountain ” is the problem of working with all the CFS symptoms. And not being able to get a proper break from it all.

All the things I have used over the last few years to help me keep going (mentally) are working less and less.
eg.
– Many/endless positive thinking books.
(accumulated since the 1990s)

– Making gratitude lists – the effect of this wears off if you do it for years. As you start to list the same things.

– A favourite book – The Road Less Travelled by M Scott Peck.

– Time management books
– Organisational books
– Inspirational quotes
– Motivational quotes
– Philosophical quotes

Apps I have installed on my mobile phone about how to control work stress. And how to better organise your workload when overwhelmed with too much stuff.

– Meditation music to calm and slow my body (that mega fast heart rate), and my racing brain. eg. Tibetan flute music.

– Twitter “favourites” filled with lots of inspiring and supportive tweets (ie. short messages)

etc etc etc – you get the picture.

But no matter how much positive thinking I do – it will not help when the physical situation remains unchanged.

I need practical help (with my work more than anything) – that much is clear to me.
But I don’t know how or where to ask for it. Or even what to ask for.
I mean, if I can’t summon up enough physical energy or mental clarity to even make a grocery list . . .

My brain (as well as my body) feels worn out now. The slightest effort to think about any of this triggers off such bad headaches that I have to give up.

This is a very negative post, I know.

But its better out than in – and thats why I have written it.
And inflicted it on you. (Sorry . . . )
In the hope that my head may be less heavy tomorrow.

Too much thinking ?

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Have realised this week I need to be more careful with what I do.  And not to get so carried away with things. If I am enjoying something and find it interesting and worthwhile – I tend to kind of throw myself into it and lose all track of time. And this can (and often will) make my CFS symptoms worse. Except I don’t realise this while it is happening or building up – but only when it is too late. If that makes sense to anyone ?  That awful post-exertional fatigue – except that “fatigue” is a very lame description of how it feels. Plus very nasty headaches this week with eye strain and over-sensitivity to bright lights, noise etc. I got to the stage I couldn’t even tolerate watching TV or reading a book or paper.
Not ideal.

This week I have spent far too much time at my desk using my laptop – again.
I have to do this with my work stuff and that can’t usually be avoided.  But have also being spending too much time on twitter. And thinking up stuff my for blog. Actually that gives the impression I am struggling to find stuff to use – but its the opposite problem. My head is full of over 20 years worth of stuff I want to get out – the problem is deciding what to write about first. So I end up spending too much time thinking and mulling over several options and ideas at once. Then end up too tired or headachey to write anything at all !
Overthinking stuff is maybe something I have always been prone to doing. In fact when I was doing Mickel Therapy back in 2008-09 David Mickel once said to me that his biggest challenge (ie. read problem !) was to get me to stop thinking so much. You see Mickel Therapy although decribed as a “talking treatment” is NOT a phsycological treatment. It has nothing at all to do with positive thinking, changing your thought processes, analysing, cognitive behavioral therapy (CBT), etc etc. (Just decided I would add this as I know there will by many sceptics out there – which is a pity.)

Back to my point :
Although I really enjoy twitter as there is a whole world of interesting people on it, and subjects that interest me – I have to accept this involves too much time staring at my laptop screen. And I will keep doing this blog – but must try to get into a better routine with it. Just decide on an item and write about it. Don’t over-think it and don’t worry about trying to make my writing perfect either. It is just a blog after all – not a classic novel. Both these things involve me spending too much time thinking, and over-stimulating my brain. Twitter of course is fatal for this – so many people and so many subjects of interest on it. Interesting to me anyway. But although my head feels it is enjoying this – I have to accept that sometimes my body does not, ie, the bad CFS symptoms this week.

Not a very good post I know – more a note to myself.

Do any others with CFS or ME feel their symptoms get worse if spend too much time thinking ? Or over-stimulating the brain in some way ?

My CFS Symptoms

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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

Brain Fog & Racing Thoughts

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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”.
Nb. I have borrowed this marvellously fitting word from a great blog called :
http://www.velo-gubbed-legs.blogspot.co.uk by Nasim Jafry. I hope you don’t mind Nasim?

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 !

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

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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 . . .

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