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Crashing badly now . . . and scared 

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Trying to put this post on my blog in a hurry.

As I can feel myself crashing badly. And I’m fearful I won’t be able to communicate at all with anyone for a while. Not that I do communicate with people very much. Apart from my husband, I don’t think I have seen or spoken to anyone for months. But I do manage to keep in touch with a couple of friends by text message. Even this is hard for me with so many ME symptoms to contend with. Finding it painful to tolerate the brightness of a mobile phone screen is just one difficult symptom.

For the last while – maybe almost 2 months now – I’ve been pushing myself regularly way beyond what I can safely do. Which is frustratingly very little anyway.   I haven’t had any choice in this – see last blog post for details.

A combination of lots of emails and maybe 3 quite long legal phone calls has finished me off.  Every email or phone conversation I only “managed” by somehow summoning up a huge amount of adrenaline (God knows where from).  Because of the importance of the communications. And every time I crashed miserably afterwards.

Every time the crashes have felt worse. More symptoms, worse severity.  But I had to keep pushing against this – because of the situation.

I feel so angry about this whole situation. All of the last 3 years. And now this legal fight – to cap it all.

But I can’t do anymore just now.

I feel as though this last 2 months extra-big  surge of stress, exertion, confusion, worry, etc has caused one crash too many.  Too many extreme type symptoms have started again, or feel worse, eg. can’t tolerate much light at all, or sound, or movement/vibration near me. All the usual symptoms are worse.

Trying to type this thru severe headaches and the agonising brightness of the screen is really really hard. And my brain feels like its plugged into electricity. I feel so horribly wired and over stimulated. Thoughts of the last 3 years of Hell all racing round my head.

I have had to spend a lot of 2017 so far in bed. Not all of it – but far too much of it. It is a rubbish life. Although there are many people with ME who are much worse than me. I know this. And I usually try to focus on being grateful that I’m not even worse. I read about one young girl who wasn’t able to sit up in her bed for 9 years.  9 YEARS . . . .  not weeks or months. And people who have lost the ability to speak. Or swallow food.

And I’m quite frightened now that I could deteriorate even further.

The last 2 months have been too much.  Its as simple as that.

I need to rest completely.  Even if this means bowing out of any communications with the outside world for a while. And avoiding any stimulation.  Or thinking.

Just breathe . . . .

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These headaches are driving me mad

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Today Sunday – I don’t know whether to cry because of these headaches.  Or scream with frustration.
I haven‘t been outside in the fresh air for more than 3 weeks now. Not even for 5 minutes, or even one minute.
Today is a lovely bright sunny afternoon. I can see lots of golden autumn leaves lying on the street below. A warm coating. And trees with different shades of green.

It’s as if nature is saying to me – Anne, please come outside and breathe me in.

And today my physical energy didn’t seem too bad. I was up,  washed,  dressed and have eaten.  Just a banana and toast and tea. And water.

And I was determined to get out.
I so badly wanted to get out.

But these headaches . . .

I’ve been complaining of them for a very long time I know.
But I haven’t successfully managed to get any medical help. In fact some of my attempts to seek help have just resulted in them being made worse. And my other symptoms escalating. (Have written about this before of course.)

The thing that should eventually help lessen the headaches a bit – is to just lie down. On the bed, or in bed.
And may have to put on eye patches. Or just pull down the blinds.
And have no stimulation at all.

Doing this (lying down) tends to ease various symptoms a bit – not just the headaches. eg, neck pain, being out of breath,  chest tightness, etc.
To mention just a few.

But I spend so much time lying down.
So much of my life.

As its never just 10 mins, or 30 mins that’s needed. More like a few hours. Sometimes three, sometimes six.
Sometimes a whole day.

Last night I had headaches that lasted for 5 hours – after taking painkillers.
But I was able to stay up during all of this time. Even though I couldn’t actually do very much.
Well – I watched Day Of The Jackal. The whole film. One of my favourite films.
And I was quite pleased with that.

But this is worse today.

And I just needed to have a moan.

Today I had the physical energy to be able to go down the stairs and get out.
But simply any movement at all is making the headaches worse. And this has stopped me.   And changing from looking at a close-up item to something further away makes it worse too. (This is a very recent change or difficulty.)
Yes, I do probably need new glasses now too. 
That’s another challenge to think about . . .

A friend told me that Specsavers at Morrisons (the supermarkets) actually do home eye tests.
So I have emailed them to ask if I can have one.

Will see how that goes.

A Long Slow Road

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Everything is very very slow.

HEALTH/ME :

Trying hard to get a bit better health-wise.
But it’s like walking such a fine line with ME.
Do just that bit too much and the payback is punishing. You crash, so many symptoms go thru the roof, and it feels like back to square one again. Then you rest to recover, try to build up a bit, feel a bit better, physically stronger, some more energy. And you try to do something big – like just go out!
Then wham and crash – all over again.
This condition is such a nasty piece of work. And I have to manage it on my own.
No medical help at all.
Last weekend I managed to get out twice – late on the Friday and also the Sunday afternoon. This was marvellous and I enjoyed both so much. But then “crash” – and I had to spend most of the last 6 days in bed again. I’m not even going to bother detailing all the different symptoms as I’m so sick of them.
But its not easy.
And painfully slow.

BANKRUPCY STUFF :

This is painfully slow too.
I don’t mean the waiting to be discharged from bankruptcy. This can happen after 1 year – or it may take up to 3 years. And of course is on your record for ever. Well, 6 years I think is technically correct. But as good as forever I feel.

That’s not the problem.

The problem for me is the amount of mail, phone calls etc that I still get from people like mortgage lenders, etc. And the adverse effect it has on me every time.
Last week alone my husband posted off 3 big A4 size envelopes stuffed full of letters, demands, threats, etc to our Trustee In Bankruptcy. We try to send any mail on every week. Last week was admittedly worse than usual – but even then.
It’s not ideal.
And this is maybe 18 months after we first took advice from the bankruptcy adviser.
And later decided to proceed. My health had totally crashed to my lowest ever level of functioning in Feb 2014 so I really felt this was the best, if not the only option.
All this time – and still it all goes on and on.
Nobody seems to even acknowledge that we are Bankrupt. The Trustee say Yes they tell everyone. But still I am being pestered.
Getting to the stage (again) that I don’t even want to switch on my mobile phone. Because of missed calls, voicemail messages, etc. This isn’t good because I still want to be able to use text messages at times, or maybe listen to calming music on the U Tube app in the phone. Even if I can do very little else some days.

I think I have said this before – this process has been torture for me. And has had the effect of worsening my ME overall. I have more symptoms now than when it started.
Plus recurring nightmares over the last 18 months.
My automatic stress response to this stuff is very heightened now. Very over sensitive. The smallest of things sends my nervous system into orbit some days. And this triggers off so many debilitating symptoms (eg, the severe headaches). It’s automatic and just happens without any thought about it. Or choice. And it takes ages (sometimes days or more) for me to “come down” again. And for the symptoms to lessen.

Basically, my whole nervous system feels like it is in shreds.

And the point of the Bankruptcy (the WHOLE point) was to give away all control of everything to a Trustee In Bankruptcy. So they would deal with everything and everybody. Most especially all the properties and all the mortgage lenders.
That was what we were told would happen.
If I was able to continue to do stuff like this – then I wouldn’t have chosen voluntary Bankruptcy in the first place.

If I had a pound for every time I’ve said this over the last 12 months . . . .

I do realise that people may read this and think – yeah, but you must have been in a big mess financially ?

And yes, of course debts had accumulated. I had been hemorrhaging money over a few years leading up to Feb 2014 because my health had been getting even worse. I mentioned this in a previous post somewhere.
BUT – if I had been able to keep going then these would have been cleared in a few years by selling maybe 2 or 3 properties. But I couldn’t keep going – as there was no way of getting a reasonable break from everything.
ALSO – if it was just about financial reasons then we could have sold our home ourselves. Rather than handing it over the the Trustee. They sold it at a cheap price (as expected). And within just a week.
And the profit made (or equity released) was approx £150,000.00. No small sum.
Plus our 3 mortgage Endowments were taken from us and cashed in. (This was a total shock.) Producing over £40,000.00. Again, no small sum.
So we “gave away” almost £200,000.00 in “available assets” to the Trustee.
My business debts (property debts) when my health crashed early 2014 were nowhere near this sum. And at this point everything was being paid ok, nothing was in arrears, no missed payments or anything like that.
I was even still getting 0% balance transfer offers from a few of the credit cards that I was using for business cashflow and expenses.

So the issue wasn’t the amount of debt being carried – but more the fact that I could do no more. Physically (and mentally) I had nothing left.

So everything given up in return for Bankruptcy = a Trustee taking over and dealing with everything = total rest and peace of mind for me = the chance of my health improving.

It has been nothing like this.

I have no idea what’s going on. And it’s very hard to get anything in writing.
From day 1 – I begged for everything in writing. From the bankruptcy adviser and then from the Trustee In Bankruptcy.
(Because of my health and most especially the brain fog.)
But it just doesn’t happen.

But I know the only way thru this – is to go thru it.
And short of medicating myself into a stupor with perhaps very strong anti-depressants – I just have to take it.

GP PROBLEM :

After 10 months of trying – I’m not much further on with getting an ME friendly GP or any help or support.
The health centre I was trying to join – I had to admit defeat. And give up. A GP there had been mentioned as being good. But the staff (a nurse and 3 different medical receptionists) had no knowledge or time for people with ME. They just kept telling me to do things I wasn’t able to do. And were abrupt and totally lacking in any understanding or patient care. Every interaction I had (one appointment and 3 phone conversations) resulted in just making me more ill with the upset and stress of it.
These people are being paid salaries to treat people like this.
So it was 9 months of time and energy wasted for me.
As I’ve said before – you need to be much more well to be able to cope with this sort of stuff.

However, I think I am now successfully registered with a new small GP surgery.
I say I think – because I haven’t had any card from the health board or anything in writing to confirm this yet. The receptionist said I should get a card to confirm after a few weeks. Hasn’t arrived yet. But hubby phoned and the receptionist said it was OK.
This surgery is small with just one GP. But there was no in-person appointment with a nurse or GP required to apply to join. Just a form which was fairly simple. OK, it still took me ages to complete with the brain fog, headaches, etc. But fairly simple by most people’s standards.

The only thing is – I have no idea what the GP’s view and attitude towards people with ME is yet.
I will just have to hope for the best . . .
Anyone reading this who has no experience of ME may think I am over-worrying about this.
Here are just 2 examples from folk on twitter very recently of how it can be :

example 1
A sufferer’s GP told her father that he “didn’t believe in ME” and that it was “a charter for malingerers” .
This resulted in a long standing family break up. As it presumably resulted in the person’s father disbelieving his daughter and giving no support.
Which to be honest is absolutely unforgivable. But the GP did terrible damage here.

example 2
A male sufferer changed to a larger health centre to try to get better treatment, more respect.
There were 8 GPs in this health centre.
Over time (probably a long time) he found out that 7 out of the 8 GPs did not believe in ME. And only 1 did.
At least there was one.
But that’s a rate of 88℅ who would treat you poorly at that centre. And just 12% who would be likely to give you any support at all.

I do hope this isn’t reflective of the nationwide average . . . .

– – – – – – – – – – – –

Ok, thats all for now.
Incredibly exhausting to write all this. Much longer than I planned.
But it is therapeutic.

Gratitude 2 : Tea

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A day of being in bed almost the whole day, after just a small amount of exertion in the morning. (Some texts then checking emails. And opening mail. Not much else.)
So frustrating . . .
But I’ve had worse days. Almost no headaches today – and I actually feel that I’ve had a lot of “good quality” sleep. And I’m grateful for that.

Now having a nice cup of tea made by my hubby.
And teacakes.
In this pretty mug which was a present.

Enjoying . . .
And tomorrow is another day.

Easter Weekend – what happened to it ?

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I realise I haven’t posted for some time.
The last few years is the worst my CFS and health has been for a long time. And it’s not really getting any better at the moment.
If anything it has possibly been even worse since maybe February-ish.
But to be honest it is hard for me to tell anything for sure.
The “brain fog” symptoms (ie, cognitive dysfunction) are quite possibly the worst they have ever been.
Plus the increased sensitivity to any stimulation (sound, TV, movement, brightness, reading, using computer, etc etc).
And all of this has been very severely disabling.
All I want is proper rest, head and brain rest more than anything. If that makes sense ?
But I remain hopeful, as I have some reasonable days. Even if they are quite few.
I guess I’m just posting this out of frustration, in the hope that I’ll feel better (emotionally that is) once I’ve done it.
And to keep my Blog going – as I  have been neglecting it.
Well, I have been managing almost nothing much of the time.
The smallest thing takes so much out of me, and the time needed to recover from it seems to get longer and longer each time.
So bloody difficult . . . .
But everyone with CFS and ME will know what I mean.
I haven’t managed to get outside the house for nearly 4 weeks now. The Easter Weekend has just passed in the blink of an eye.
Husband had the full 4 days off. I was glad he did – he was well overdue a break and some relaxation. I just wish I had been able to enjoy more of it with him, but have been in bed throughout most of the time.
The thing that has probably disappointed me most was not being able to get out into the garden. Ok, it is a mess out there, no doubt to our neighbours’ horror.  But I would love to have been able to sit outside and feel the fresh air and sunlight on my face.
I love the sun.
However we did enjoy some tasty   Chinese food on Sunday night and a couple of glasses of wine. And despite my ability to tolerate TV being very low just now – we did manage to watch a good film.
So it wasn’t all bad.

Some Days Positive Thinking Just Doesn’t Work

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Negative Blogpost Alert !

You have heard the song It’s My Party And I’ll Cry If I Want To ?
Well this is My Blog and I’ll moan if I want to . . .
Feel free not to read on.

There are some days when all the positive thinking in the world just doesn’t work for me.
And I want to throw all my self-help books, gratitude lists, motivational, inspirational & philosophical quotes, etc etc etc onto the nearest bonfire.

And just scream :

  • I hate having CFS

  • I hate how I have lost so much of my life to it

  • I hate how it becomes more “normal” to have symptoms than not have them

  • I hate how I have been in bed for so much of this year

  • I hate how it is often 1 step forward, then 2 back

  • I hate the view out my bedroom window – the side of next door’s house, a brick wall.

  • I hate how the longer you have CFS the more symptoms you seem to develop

  • I hate how I have been treated by GPs

I hate that I have been taking anti-depressants for such a long time, maybe 8 years.
I actually wonder if they make the “brain fog” worse ? This is an incredibly disabling symptom (especially when trying to work).

  • I hate how I can’t manage GP visits well, always a disaster. I crumble every time.

  • I hate how my husband often plays it down to people. It makes me look as if I’m exagerating how bad it has been.

  • I hate that the house always needs cleaned.
    (I can’t manage it without half killing myself, hubby is overloaded with stuff to do, and we can’t afford a cleaner.)

  • I hate that our grass is always overgrown at front and back.
    (Same reasons as above but substitute gardner for cleaner.)

I hate that our central heating system doesn’t work properly (the boiler is approx 40 yrs old). The heating doesn’t heat the rooms upstairs well (bedrooms & my office).
Dreading winter.

  • I hate that many people seem to think CFS and ME are trivial

  • I hate that I have no help or guidance managing my CFS.
    On my last visit to my GP I virtually begged for practical help. She just doubled my dose of anti-depressants. This was 2.5 years ago.

  • I hate that I wasn’t strong enough (physically or mentally) to have coped better with the stresses of the last few years. Partly caused by a tenant from hell, a very poor letting agent and scum/bullying tradesmen.

  • I hate that I cannot get away from my work and have a long long break

  • I hate that I know how much Mickel Therapy helps CFS, but I haven’t been able to use the “tools” for the last few years.
    Everything in my life seems to be working against it.

  • I hate feeling that I just want to run away from everything at times

  • I hate how very pathetic this all sounds . . . !

  • Some days I am totally sick of everything.

I feel quite a lot better now for having this rant.

I am sure it is healthy and positive to let these bad emotions out once in a while. Coping with a long term (mainly negative) situation by just surpressing these emotions all the time – we are in danger of becoming like a pressure cooker. Ready to burst.

We can positive think all we want, but this will not change the practical reality of a physical condition.

To quote what David Mickel once said to me :

” The body is the boss”

ie. it will not be fooled into being told a situation is ok when it’s not.

More of those comments

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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 ?

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