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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 . . . . .

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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.

A Poorer Weekend

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This weekend was less good than the previous one.
Have been in bed pretty much the whole time. No tv, or reading books or magazines. Almost nothing. Too tired for anything. Body and brain exhausted. Food brought up to me in bed by my husband, which I was so grateful for.

This has been getting more and more common for a while now. Not really sure how long, and I don’t have enough mental energy to think back. But I sometimes feel the days, weeks and even months are all merging together.

The only thing that distinguishes one week or month from another is what “property crisis” has happened. (Or is ongoing.) And needed urgent attention.
Mind you, some of the things that get to a critical stage are caused by me only being able to work so slowly. And for shorter and shorter lengths of time. My frightening backlog just keeps getting bigger.

On Friday I only managed to do two things :

(a) An email to a large utility company about an issue ongoing for a few weeks now. Concerning a (currently empty) property where it seems the last two tenants didn’t bother to pay their gas & electric bills. And the letting agent has totally failed to confirm the move-in and move-out readings. All causing me unnecessary hassle and stress.
I didn’t have enough energy (physical or mental) to phone. The email wasn’t massively long – but it took me 2.5 hours to type and send.
Q. This may sound odd to any non-CFS/ME sufferers reading ?
To explain, the TOTAL time the email took me to do was 2.5 hours – not incl breaks. This was with numerous breaks/stops because my energy and thought processes were so poor. A phone call would have been beyond me as you cannot take a lot of breaks while talking. Either it would be a very long, expensive call. Or, more likely, the other person would just hang up.

Anyway, this was on Friday morning and took all my energy away for the rest of the day. I was unable to do anything after that.
And I mean anything.

(b) At around 11.00 pm at night I realised that I had meant to check my bank accounts that pay the BTL (buy to let) mortgage direct debits and receive rents.
This is a vital thing I have to check regularly. As the mortgage DD’s always come off on the same dates, but unfortunately rents don’t always come in when they should. This, together with the poxy overdraft limits = cash-flow problems at times !
    Anyway, when I went online to check, it was as I had feared. One rent not thru and another short-paid for some reason. This meant I had to move some funds from elsewhere. May sound not too difficult ? Assuming funds can be found of course . . .
But I was trying to focus and work through so many CFS symptoms. Another bad headache started after just 5 mins at my desk, as well as lots of other symptoms. On top of feeling very weak and drained of all energy all day.  Add in the brain fog – and this task became very difficult for me.
I got it all sorted out ok – but took me 90 mins.  When it should have taken 10 or 15 mins. 

NB. This is why I have a massive backlog. Not because I have any more work than anyone else.

The after-affect of having to push on like this, when I had been bad to start with, was “crash” – and all of Saturday and Sunday in bed.

Most of Sat my brain was still racing and in overdrive thinking about all the other things still on Friday’s To Do list. Maybe 15 or 20 things – and I had only managed 2 of them.
And some of these had been carried forward from previous days . . .
But the more I thought about it, and tried to think of ideas, solutions, better ways of doing it all – the more severe my headache got. And other symptoms.

It was making me increasinly ill.
And I was feeling quite beaten by it all.

But on Sunday – I listened to some meditation music thru my mobile with the earphones. It was trial and error, but some of it was really good. Really nice. And I think has helped a bit.

Now, Monday morning, I still feel very physically weak. But my head feels calmer, less exhausted maybe. And I haven’t needed any headache tablets for 18 hours now.

A step in the right direction ?

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  . . .  !

GPs treatment of CFS is . . .

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One of the main reasons I started up this blog was to get out some pent-up anger and emotions that have been blocked in over all the years. One area has been dealing with GPs and other health professionals.

Note :

I have removed this post now.  For a few reasons :

1) Don’t want to get struck of by my GPs surgery !
Although it would be good to find another more “CFS/ME aware” GP – I don’t have the energy or the time to do this. Not right now anyway.

2) I don’t want to cause any offence to the clinical phsycologist I was referred to for the standard CBT treatment years ago. He was very nice and easy to talk to, and certainly made me feel much better about myself at the time.  To that extent CBT did some good. On the emotional front.
But unfortunately was no practical help at all for CFS. (Which we now know is to be expected – as a phsycology-based treatment will not cure a physical condition/illness.)

3) I certainly don’t want to cause any offence to David Mickel in Elgin – who must be the best GP anybody with CFS or ME could wish to have. Having met him and knowing his sense of humour – I am pretty sure he would not be at all upset at my list of rants.  But as he is doing some GP work again now (as well as the Mickel Therapy) I decided to add this anyway.

4) Now that I have had my mini-rant and got it off my chest – I feel much better for it !

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