Your Jaw Never Gets Tired

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 . . . . .

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 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.