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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.

Media nonsense about ME and exercise

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This article has been re-blogged from the Blog http://www.uttingwolffspouts.com which is written by Claudia Gillberg and Geoffrey Jones.  I had to reblog this as it concerns a very important subject that has often been misunderstood concerning the impact of exercise on people with ME or CFS.  The dreadful article on the front page of a major newspaper this week prompted a justifiable outcry from many sufferers of this illness. And it was no wonder – our lives are hard enough without having to contend with this rubbish. The Telegraph article is here http://www.telegraph.co.uk/news/health/11959193/Chronic-Fatigue-Syndrome-sufferers-can-overcome-symptoms-of-ME-with-positive-thinking-and-exercise.html  (if anyone wants to read it).

The blogpost speaks for itself – and I love the title :

” THE SCIENTIFICALLY CHALLENGED UK MEDIA STRIKES BACK “

” When I first heard The Telegraph had featured an article concerning a follow-up study of the notorious PACE trial I was inclined to ignore it1. I’ve long become used to the appalling coverage of ME by the British media2 and felt I didn’t need to read any more disinformation disseminated via the Science Media Centre. However, I cracked and had the misfortune to read an article written by Sarah Knapton that is the worst I have seen in the thirty years I have been ill with this disease, which considering the competition is an impressive achievement1.

The article clearly implies ME is a non-illness, the suggestion in the headline that a bit of positivity and exercise could cure sufferers merits no other interpretation. One wonders what spin was put on the latest study by the SMC, as the results of this research bear no similarity to its reporting in the press. Indeed, flawed as the PACE trial is, at no point do the researchers suggest GET or CBT cure ME, as claimed by Ms Knapton in her inaccurate and mendacious article1.

Most in the ME community are aware of the substantial problems with the PACE study, including the selection criteria, the self-reporting and lack of objective measures, a flawed methodology, which have been outlined in detail by various authors including Angela Kennedy, Professor Malcolm Hooper, Tom Kindlon, Jane Colby, the late Dr Elizabeth Dowsett and, most recently, David Tuller in the US. Unfortunately the UK media continues its obsession with treating ME as a non-illness affecting lazy people whose only problem is their inability to pull themselves together and push through their fatigue, which seems to be the only symptom the media acknowledge.

To start Knapton states:

‘Chronic Fatigue Syndrome is not actually a chronic illness and sufferers can overcome symptoms by increasing exercise and thinking positively, Oxford University has found’1.

Not a single word in that opening paragraph is accurate. The study included a large number of participants who probably did not have ME as the primary criteria for participating was fatigue. Despite this the PACE trial was only able to establish that some participants showed mild improvement while undergoing GET and CBT (though these were self-reported, subjective results). Participants remained ill and severely limited in their ability to perform normal daily activities.  To repeat, any positive results revealed by the trial were barely notable yet according to Knapton,

‘The new study found that graded exercise therapy (GET), in which sufferers gradually increase activity levels, as well as cognitive behavioural therapy (CBT), which encourages positive thinking and behaviour, had a dramatic impact’1.

A definition of dramatic: sudden and striking, impressive3

The PACE trial in no way justifies such an adjective, a more accurate description would be, ‘a negligible impact’ though this would not have supported the slant of Knapton’s piece.

Her next paragraph aggravates matters,

‘The finding is important because many CFS sufferers believe that exercise will make their condition worse.’1

Sufferers do not believe, ME is not a religion (the proponents of the psychosocial model and their media acolytes exhibit cult-like behaviour but that’s a separate issue). ME sufferers know exercise can make their condition worse through first hand experience of the damage it can cause, something supported by scientific studies illustrating physiological damage(4,5).

Two more paragraphs in the article were particularly disturbing:

‘But gradually increasing exercise and therapy to remove patients’ negative thoughts that they would never get better seemed to work. Prof Sharpe said the study was likely to prove controversial because a “minority” believe that CFS is either caused by a virus or is chronic and cannot be alleviated.’1

In what other chronic illness would sufferers be accused of contributing to their illness due to their ‘negative thoughts’? A more clear case of blaming the patient is hard to imagine and to make such a statement with zero evidence to support it, is unworthy of an academic. Suggesting that only a minority believe a virus triggers the disease and that it is chronic is not only untrue, there has never been any suggestion that ME is an acute condition, but a use of language designed to offend ME sufferers. The following paragraph continues in the same vein,

Prof Sharpe added: “It’s wrong to say people don’t want to get better, but they get locked into a pattern and their life constricts around what they can do. If you live within your limits that becomes a self-fulfilling prophesy.”1

There is no science to substantiate anything the professor states in this sentence and I can think of no other illness in which a researcher would speak of sufferers in such a fashion, it is immoral, breaches the Hippocratic Oath and constitutes abuse of a vulnerable group of patients.

Another point to make, highlighted by John Cohen in Science6, is that the basis of the original trial’s supposed success has been undermined by this latest study. The PACE trial claim that GET and CBT were the best treatments for ME is demolished by the finding in this latest study, which revealed that all therapy options produced the same results. To quote John Cohen,

After analyzing the responses, the researchers concluded that the benefits reported in the original study, which assessed participants at 1 year, were maintained for at least another 1.5 years. But the participants randomized to receive the two interventions that initially did nothing also improved, and there “was little evidence of differences in outcomes” when compared with the people in the other treatment groups’5.

Sharpe et al try to explain this by claiming that participants undergoing other therapies switched to GET and CBT in the intervening period but there is no evidence to support this conclusion. I’d also like to query what condition participants are in now, as the suggestion that any improvement was maintained for ‘at least another 1.5 years’ implies their health could have declined after this period of time.

Knapton’s article provides a list of ME symptoms, which exclude post-exertional malaise (PEM) arguably the defining symptom of the illness. It also includes a link to a video featuring Martine McCutcheon talking about the lightning process, telling you all you need to know about the malicious intent behind this article.

‘These are not magic cures’ says Sharpe. Apparently Sarah Knapton disagrees.

A final comment from Professor Sharpe:

‘It’s sometimes quite hard to understand what motivates the very vocal minority that gets upset by this apparently benign bit of moderately helpful treatment’1.

Perhaps some of the headlines in the British media this morning will enlighten the good professor as to why so many in the ME community are upset by his ‘treatment’.

1) http://www.telegraph.co.uk/news/health/11959193/Chronic-Fatigue-Syndrome-sufferers-can-overcome-symptoms-of-ME-with-positive-thinking-and-exercise.html?utm_campaign=Echobox&utm_medium=Social&utm_source=Twitter#link_time=1446019914 (Accessed 28/10/2015)

2) http://uttingwolffspouts.com/2015/02/14/chronically-fatigued-the-uk-media-and-the-recently-released-iom-report/

3) http://www.oxforddictionaries.com/definition/english/dramatic (Accessed 28/10/2015)

4) http://www.ncbi.nlm.nih.gov/pubmed/23813081 (Accessed 28/10/2015)

5) http://www.ncbi.nlm.nih.gov/pubmed/25990639 (Accessed 28/10/2015)

6) http://news.sciencemag.org/health/2015/10/criticism-mounts-long-controversial-chronic-fatigue-study (Accessed 28/10/2015)

Difficulties keeping in touch and feeling isolated

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I’m feeling a bit down this week at how difficult things are.

My main way of keeping in contact with people has usually been with text message. This is often a struggle too, but at least it was an option on days when I was able to do it.

But now I feel this has been taken away from me.

I just can’t bear to switch my mobile on and see missed calls, text alerts about the missed calls, and voicemails. From people (eg. mortgage lenders) about the bankruptcy stuff. They usually refuse to acknowledge I am Bankrupt. 
Because all this stuff has been going on such a long time – my automatic stress reaction is quite severe now. I talked about this in a previous post.
The last time I put my mobile on it showed I had accumulated 20 voicemail messages. Over a few days. And I ended up having to listen to them – I couldn’t stop myself. And of course I ended up totally debilitated afterwards by headaches.

And another whole day was wiped out because of it.

Another big problem is my hyper-sensitivity to things like my laptop or tablet – this often makes it torture to use email. I can manage it some of the time, just not very often. And even that’s assuming my brain fog will allow me to think out an email.

Phone calls are often too difficult – for lots of reasons.
So many reasons.
Other ME sufferers will know exactly what I mean, especially if they have had severe symptoms.  I don’t have enough energy to explain it here just now. I’m sure I’ve mentioned this before – somewhere. If I can find it later I will add a link.

So the only thing left is sending letters or cards.
Which is a nice thing to do – really nice actually. And lovely to receive.
But it takes a lot of energy too.  And not always ideal. Eg. I may just want to text hubby to buy me some more painkillers on his way home.
Plus, when my supply of cards runs out – I can’t just easily order more and have them delivered.
Especially if I feel I cannot open the bloody door . . .

I’m so frustrated at how much these neurological type symptoms (headaches, brain fog, hyper-sensitivity, heightened stress response, etc) are severely limiting my life day to day. On top of everything else.
And even more frustrated that the Trustee In Bankruptcy cannot seem to do anything about many of the unwanted phone calls. Or visits.

I thought about getting another (very basic) phone of course. Maybe just for texts.
But with my levels of exhaustion, brain fog, headaches, etc etc – this is beyond me at the moment. And the delivery wouldn’t work anyway.

Not being able to open my door to anyone (on a good day when I’m up and about) is rubbish.
At least Asda or Tesco deliveries can be booked for an evening delivery when it should be “safe” to answer the door. Thank God for that !
But most other things can’t.

But it’s just life I guess.
We have to take the bad as well as the good. That may sound philosophical and accepting. But I don’t actually feel philosophical or accepting in any way at all right now.

The thing is – we all need connection and contact with other people. 

The physical ME symptoms I struggle with already drastically reduce my contact with friends, and the outside world.
And for this to be made even more difficult now, thru no fault of my own, is hard to deal with some weeks.

Hence why I’m writing this post – to get it out.

Final note :

I have an Eckhart Tolle app on my mobile. Which has lots of calming and accepting and philosophical statements on it.
A good idea I thought.
A positive action.
Trying to help myself.
Will help me stay strong.
Try to focus on bring grateful that things aren’t even worse.
But have you spotted the obvious problem ?

I cannot switch on my fucking mobile because of all the shit going on . . . .

Apologies for the F word.

Unwanted Visitors

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Last Friday was a very bad day.

An incident happened in the morning which sent all my ME symptoms into freefall. And me into a big meltdown.
It was stressful and unnecessary.

The day started well and I was up and dressed at 9 am.
I’d had a bath or shower the night before, and had gone to bed very exhausted after it. But had slept soundly. So I was quite refreshed for a change.
The plan was have some breakfast then get outside for a short walk. Even if just very short. It looked lovely outside – bright and sunny. I was desperate to get out.

I was sitting enjoying my breakfast when the doorbell rang at 9.30 am.
I was expecting a delivery from Amazon of Co Enzyme Q10 capsules (taken to try to reduce my chest symptoms). So I opened the door without hesitation.
Two men were standing there and one of them introduced himself and showed me some ID.
I didn’t take in much of what they said or where they were from – but I managed to hear the bit about repossessing a property. I knew they didn’t mean the one we now live in which is our home now. But my head was immediately spinning.
I think I said something like “Oh for God’s sake, how many times . . . ” And then “you better come in” . And I brought them into the living room.

I wouldn’t let them talk as my whole system had gone straight into a red alert state. From a stress/panic level of zero (totally relaxed) right up to a 10 (off the rails) in a spilt second.
No thinking about this and no choice in it at all.
I mentioned this in a previous post – the effect just a text or voicemail about the Bankruptcy stuff has on me now. To the extent I feel I cannot switch my mobile phone on now, as my body’s automatic stress response is so damaging for me (and my ME symptoms).
And that is just a simple phone message. This event probably caused a much worse reaction.
I managed to digest the fact they represented solicitors who were acting for the mortgage lender Mortgage Express. Who now wanted to repossess 2 properties. Or they may have been from Sheriff Officers (like bailiffs) who the solicitors had employed.
Anyway, I got the gist of it.

I wouldn’t let them talk – instead I went straight into a sort of rant that must have lasted 25 minutes. Hardly stopping for breath. A few times I did almost stop as tears were threatening to take over. But I just kept on and on – like a steam train.
I was saying (maybe yelling) stuff like :

I am Bankrupt and have been for a year now

You (ie Mortgage Express) have been told this over and over and over

How many times do you have to be told ?

Why does NOBODY update your records ?

The whole reason for the bankruptcy was my health – to give away ALL CONTROL OF ALL THE PROPERTIES to the Trustee In Bankruptcy.

So they would deal with EVERYTHING.

That is what I was told would happen

But it hasn’t happened

This is going to kill me

If I was well enough to sit here and have meetings – I wouldn’t have had to go Bankrupt in the first place

If it was just about finances – then I wouldn’t have volunteered for Bankruptcy. We could have sold our house yourself.

I used to have a perfect credit rating of 999 with Experian (nothing to do with anything now – just misplaced pride I guess !)

I shouldn’t be getting treated like this

The Bankruptcy advisor told me the flats would all be handed back to the mortgage lenders. Then told us that the Trustee would be selling them instead.

Which was totally fine. Either way was fine

This was the WHOLE point of the Bankruptcy.

I’ve been trying to give you (Mortgage Express) these properties back for well over a year now

What is the point of repossessing properties that I am trying to give you back ?

How hard can you make it ?

It’s all such a shambles and its killing me

If you’re going to speak I’ll have to record it, as I won’t be able to remember anything you’ve said . . . ! (they couldn’t get a word in edgeways)

And on – and on – and on I rambled and ranted, until I finally ran out of energy.

The 2 men seemed fairly sympathetic, but that was maybe just because they couldn’t get a word in.
They did manage to mumble about procedures and stuff. To be honest I wouldn’t have taken in anything they said – even if I had allowed them to speak a bit more. They gave me some legal letters and tried to explain what they were. But I just grabbed them and was saying stuff like
“I can’t even read this – it will just get posted onto the Trustee In Bankruptcy for them to deal”
“EVERYTHING gets sent onto them . . . ”
“They are supposed to deal with EVERYTHING . . .”

I think they were glad to get away.

After they left all my energy just evaporated.
I sat looking at my cold cup of tea for ages.
Then the tears started. From exhaustion, frustration, anger, etc etc.
Then I decided to phone my husband at work.
I shouldn’t have done this. But I had got myself into such a state I had to tell him. But all I did was rant on the phone to him. I kept saying things like – this shouldn’t be happening, they (the Trustee) must be able to stop this stuff, they were meant to deal with everything, etc etc etc

He then phoned the Trustee. But he said he ended up going into a rant himself on the phone, as he felt helpless and frustrated at not being able to do much to help.
When he called me back later, the only update was they had said they were very sympathetic to my health situation, but this stuff is just procedure.

And they suggested that I just do not answer the door to anyone . . !

How long for, I wonder . . . ?
These visitors were talking about 2 properties. There are another 12 to go . . .

I spent the the rest of the day curled up in a tight ball on the sofa. And just cried and wept for a few hours.
My temperature must have plummeted as I was very cold although it was sunny outside. So I needed the heating on for the whole day.
And all the usual symptoms were there – headaches, out of breath, heavy weight/feeling of compression on chest, legs and arms like jelly with no strength at all, head spinning and feeling dizzy, chest pounding – I dread to think how high my heart rate must have been
etc etc etc

So, to sum up the current situation :

Can’t bear to switch mobile phone on – because of unwanted missed calls and voicemails.

And cannot risk answering the door for the foreseeable future.

Given that I heavily rely on things being delivered (eg health items from Amazon) this isn’t ideal.

This situation is not conducive to improving my health in any way at all.
It is damaging it further.
It’s like constantly being made to walk on broken legs – destroys all chance of healing and recovery.

I just wanted to run away.
But I didn’t have the strength left to walk to the kitchen.

On Sunday night/Monday morning I was sick during the night, and had a lot of bouts of diarrhoea.
Horrible.

My whole system felt wrecked.

I just hope things improve soon.

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.

What the world doesn’t see . . .

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This photo struck me as being a good visual descriptor of so many people’s lives when they have ME/CFS.

It certainly is for mine.

So much of our lives are not seen by the rest of the world.  Maybe not by anyone at all, unless we live with a partner or family. So much is hidden and out of sight from friends, relatives, acquaintances.  Not intentionally,  but just the way it is.
The times we do manage to get out and see a friend, or go out somewhere with our partner, can be few and far between.
These are occasions where we have managed to reach the “tips of our icebergs”.

What the world doesn’t see is the struggle the rest of the time. Our lives behind the scenes. Or the bulk of our iceberg that is usually beneath water.

Some examples from my day to day life :

Being so exhausted after a shower or bath that I was unable to go out.
Or do anything.

Having to eat my dinner in bed. Sometimes in a lying down position if unable to sit up. (Not ideal for digestion I wouldn’t think. )

Usually needing a seat with a high back to support my shoulders, neck and back of my head.
Without this I often wouldn’t manage to remain sitting upright for very long. As neck pain would set in. It often feels like my head is too heavy for my neck to support.
Maybe I have a very big brain . . .

Having to buy clothes that will not need ironing.

Actually buying clothes is only done rarely because of the massive difficulty with it.
(This would need another blog post to explain to non-sufferers.)

Same with going to the hairdressers.
I managed recently to get my hair cut and coloured.
This was the first time in over 3 years.

Washing clothes/laundry – but the stuff lying in the washing machine for 3 days until I have enough strength and energy to take it out.

The struggle just to fill in a simple form, and the mental exhaustion afterwards.
eg.
Filling in a Dvla form for a new driving licence recently took me ages. I had mislaid my licence ages ago. But have now moved house also. From the guidance notes I couldn’t decide if a fee was required or not.
Should have been simple but this took over 2 hours to do.
Because of brain fog and headaches.
(and No – I couldn’t phone to ask. See next point.)

Phone calls are almost impossible most of the time.
Unless there is no queue, no more than 2 options to select from, and just very quiet soft music while holding on.
Even on “good energy” days, the brain fog and headaches make this simple task incredibly difficult.

The internet and using my laptop or tablet are torture a lot of the time. (And my mobile.)
Because of hyper-sensitivity to them. Headaches get triggered almost immediately. Brain fog gets worse. And some days it feels like my whole nervous system goes into overdrive.

Doing a simple Asda shopping online yesterday was agony.
Should have been simple. I had made the list the night before. But it took ages.
And triggered off so many symptoms that I was in bed the rest of the day recovering.

Keeping in touch with people is hard when I often can’t manage to type an email, make a phone call, or write a letter or card.
Or I manage to do it – but pay for it with nasty after-effects (exhaustion, headaches, even worse brain fog, etc).
Even text messages can be hard to do as I can’t tolerate using my mobile at times.

Reading a book.
Another simple task most people take for granted.
But I’m very limited in being able to do this. For lots of reasons.
Brain fog – this causes so many problems. Have to keep re-reading stuff as memory is awful. Or I just can’t take in what I’m reading.
Lack of strength in arms – makes actually holding a book too hard some days.
Headaches – often as soon as I try to concentrate.
Hyper-sensitivity to reading a Kindle download on my tablet.
A neighbour loaned me a book when I first moved here.
It took me 11 months to read it . . .

This list could go on and on and on.
But that would be very boring. And you get the picture.

But I guess the 2 hardest things about day to day life for me are :

1) Having to choose between small things because you can’t do both.
eg. Put grocery shopping away OR have a shower.
eg. Make a phone call to pay a bill OR send a text message to a friend.

and

2) The length of time it takes to recover from doing things.
To be stuck in bed all day recovering from just doing an online grocery shopping is pretty grim.

But this stuff (struggle) varies from day to day and week to week. It doesn’t move in a straight line. Up or down.
And while this does make it almost impossible to monitor and control – it still gives me hope that things will improve in time.

I mean, if something varies then it can surely improve in time ?
And more of my iceberg will move up above water . . . .

My Life so far – NOT what I expected

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image

I save a lot of pics like this if I see them on twitter or somewhere – just because I like them.  Mainly funny, upbeat,  philosophical, inspiring,  motivating etc.
Something a friend said to me in a text message recently reminded me of this picture.
It certainly describes my life.

But I’m not OK with it – yet. That will take a while.

I’m 55 – and now have nothing.

The post from 7 Feb 2015 titled Battered, Bruised and Bankrupt explains.

When I say nothing – I mean nothing financially. And no security.

No money
No income
No savings
No ability to earn any income because of all the ME symptoms severely affecting my life. (Certainly not just now.)
No Benefits – I am not well enough to deal with the process. Nowhere near well enough.
No GP ( or as good as no GP).
I do own 50% of this flat I now live in with my husband – but at the moment this is 50% of nothing (financially). As it has a large mortgage on it and there is no equity in it.
And we now have nothing to pay off the interest-only mortgage with in 8 years time. We did have various mortgage Endowments – but they were taken from us by the Trustee In Bankruptcy and cashed in.

Worked hard since 17

With Commercial Union Assurance (now part of Aviva) for 19 years.
Then Prudential for almost a year.
Then NTL ( now Virgin Media) in telecoms for 4 years

Studied for professional qualifications in Insurance (Life and Pensions) and Financial Services (for Compliance work).
Obtained A.C.I.I ( ie. Associateship Of The Chartered Insurance Institute) in the Life & Pensions branch early 1980s .
Obtained MLIA {Dip) and FPC (Financial Planning Certificate} in early 1990s.
During the early 1980s I also worked in pub jobs for 3 (sometimes 4) nights a week – on top of my full time job. I did this over a period of a few years and think I worked in 5 different pubs.
The reason – to save up for my 1st flat. For the deposit, costs and fees, furniture, etc.
I was keen to do this but not have any debt when I moved in.

All these jobs/careers I had to give up and resign from due to my health. And all the symptoms of what I now know to be ME (or CFS as it was called at my diagnosis).
NB. I left all these jobs with nothing – even after 19 years in Commercial Union.
There was no help or support from my GP at all. And I just wasn’t well enough to be able to push for more help.

Finally got diagnosed with what was called CFS in 2003.
After more than 12 years of going back and forwards to GP – but feeling I was being treated like a time-waster each time. As if I was just being lazy.
Appalling treatment really.

By 2004 I had to accept I just couldn’t risk working for an employer again. Assuming anyone would have me . . .
Although I was feeling a bit better again after some rest time, I still had a lot of symptoms to cope with. I knew I could only work when I was able to. And would often need big rest and recovery periods.
No employer could be expected to cope with this.

So the only option left was to work for myself.

In 2004 I started up the Property stuff seriously.
Buying the 2nd flat to rent out (ironically the one we now live in and are very glad to have !).
By using savings and remortgaging our home I got started.
Then managed to build up to owning 15 flats by 2014.
Mainly by remortgaging them or using additional borrowing to raise funds for the deposit, fees and costs to buy the next flat. When the value of the property had increased enough to allow this.

The point of this was to get to a point where I would have been able to sell off a property every year. Or maybe every 2nd year.
And the profit would give me an annual income.
(It is very hard to make any real monthly income from the rent – there are so many expenses and things to deduct from it.)

Ironically, if I had done nothing at all we would now be much better off financially.

Hindsight again . . . . A totally useless thing.

Remortgaging our home was a calculated risk. But it was the obvious and only option to use. Neither of us have ever had any inheritances or lottery wins !
It had loads of equity in it at 2014.
Partly because of the increase in the property market. But also because we had bought it in 1998 with a very small mortgage. We put down a large deposit of 65% of the purchase price.
This was done partly by saving up very hard for a few years and going without most things. Really scrimping on everything.
And the reason for this – our future security . . . .

Now at July 2015 – Bankrupt.

Husband dragged down with me – as some properties were bought in joint names.
But he has been totally supportive and never blaming me. And I’m so grateful for this.
So, the loss of everything – apart from the flat we are living in.
Oh, and we were allowed to keep our beloved BMW. Because it is so ancient now ! (Think I mentioned this in a previous post.)

As I explained in previous post, the Bankruptcy was voluntary because of my health.
I couldn’t go on.
And this was the only way, as I understood it, to give away all control and responsibility for all the properties. And hand over all dealings with everyone to a Trustee In Bankruptcy. ie. All dealings with banks, letting agents, tenants, insurance companies, etc etc.

It hasn’t worked out quite like that . . . .

But that’s life isn’t it ?
You get told something but the reality turns out to be quite different.

But at some point all this horrible Bankruptcy stuff will come to an end. And I will be able to “relax” and have some peace of mind.
No idea when this will be – impossible to get any clear info in writing.
And I will have the energy (well, more than just now) to hopefully find a decent “ME friendly” GP.
Not really for treatment – not expecting miracles. But just for some symptom control and support.

At the moment I have none of this. Just nothing at all.

But I’m still here.
And there are many people out there with ME or CFS who are much much worse than me.

So I’m grateful that I’m not even worse than I am. And that I do have “mini bursts” of energy. And can do some things. Even if the recovery time after it takes days . . . !

PS.
Apologies for any typing errors. I tried my best to check it before hitting the publish button.
But I really struggle to use my laptop or tablet etc. And am all out of energy now.

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