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This is what Very Severe ME is like

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This is Whitney Dafoe. He is 36 and has Very Severe ME. In this photo he is being taken to hosptial to have his feeding tube changed. I think he was briefly lifting his arms up at the pleasure of actually feeling fresh air on his skin.

This is a post from Whitney which was put on Facebook on 7th August 2020 for Severe ME Awareness Day. I think it was typed by his sister. As follows :

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” I haven’t left my room for 7 years except when I have to go to the hospital to change my J-tube feeding tube out of medical necessity. I am only able to do this without dying by being sedated with Ativan the entire time as well as Fentanyl during the procedure.

I haven’t been touched by another human being without it hurting me in 7 years.

I haven’t been able to speak for 7 years. I haven’t had a conversation with another human being in 8 years.

I haven’t eaten a crumb of food or felt a drop of water in my mouth in 6 years. I’m alive because of nutrients being pumped into my body with machines and tubes.

I haven’t taken a shower in 7 years. I clean the most needed parts of myself with baby wipes every day and it absolutely exhausts me. I can’t handle having someone else clean me.

I haven’t cut my own toe nails in 7 years.

I haven’t been able to hold or even touch my camera in 7 years (photography is my passion and my life).

I haven’t peed standing up in 9 years. I haven’t walked to the bathroom to pee in 7 years. I pee in a urinal in bed.

I haven’t made love to a woman in 9 years. I haven’t been sexual in any way in 5 years.

I haven’t brushed my teeth in 6 years. It hurts my stomach, making it worse and putting my ability to tolerate the feeding tube at risk. Which puts my life at risk.

I haven’t seen a dentist in 9 years.

I haven’t been able to tolerate the sound of another person’s voice without being sedated in 7 years. I wear heavy duty earmuffs whenever my caregivers are in my room for the bare minimum of time. They can’t talk and have to be as quiet and gentle as possible.

I haven’t felt like a human being in 7 years. All humanity has been taken from me by ME/CFS. I live only to continue living. There is no love, joy, passion, creation. Only endless numbered days.

I fight to survive for all those living and dying in silence and darkness. ”

End of post

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I hope some people out there who do not have ME themselves, and are ignorant about how bad it can be, read this.

Please read it again. And try to imagine your own life being like this. For at least 7 years. With no end in sight. And the world not interested. Imagine how strong mentally you would need to be to cope?

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Fighting a legal battle with very few resources

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Pie chart explained at the end.


It feels like most of this year has been taken up trying to deal with 2 very big problems that have occurred as a consequence of my Bankruptcy. Which is dealing with legal and financial “debt” actions for bills and charges relating to one of the flats I used to rent out. In Motherwell.

Both the council for the area and the factors that manage the property want me to pay for things that have arisen or been charged after I went bankrupt in Sep 2014. This is why I referred to “debt” in inverted commas – as it is debts I haven’t run up myself. And no reasonable person would expect to be liable for these – as the properties had all been handed over to a Trustee In Bankruptcy in 2014.

My Trustee In Bankruptcy (say) they have repeatedly explained my situation to these 2 organisations (particularly the factors) over the last few years – ie, I am bankrupt, went bankrupt because of health, gave all assets away on becoming Bankrupt, have no income or savings now. And can hardly manage to deal with anything because of my health. Which is WHY I opted for Bankruptcy.

Sorry, I know this is the 1000th time I‘ve mentioned this . . . . !

I have also made (been forced to make) some efforts at explaining all this myself to these organisations – usually in long emails. At great cost to my health every time, as even small exertions usually make me more ill. And can cause me to crash/relapse even further for days, weeks, etc.

Trying to think and type out an email will usually take me hours and is a very big exertion with my level of health and ability (or disability).

Again, this is why I went Bankrupt.

But these 2 particular organisations don’t care a jot about this. They seem determined to push on for their pound of flesh.

Some of this stuff I’ve probably written about in earlier posts – sorry about this. And for maybe repeating stuff.

But I desperately need to try and pour some of this out – as it is all keeping me very ill indeed. It feels like it has consumed most of this year. And it is consuming me. My physical health and my mental and emotional health too. Nightmares all the time, increasing this year – with all this worry.

Oh, and the Bankruptcy itself is still ongoing.

Still being administered.

Still dragging on.

Some other flats still to be sold.

So for me, being “discharged” from Bankruptcy in Sep 2015 has meant absolutely nothing. I have no idea what benefits there are from saying a person is discharged. Not that I expected any “benefits” as such. I just mean what is that actual point of the statement saying you are “discharged” when you were a landlord with various properties ? Because they don’t get disposed of overnight. And it is also pretty unlikely they will be disposed of within 12 months either. (By “disposed of”, I mean sold or repossessed.)

Given that one mortgage lender has taken almost 3 years to repossess an empty flat. A flat that was not tenanted, was unoccupied, ie. vacant – in Sep 2014. And well before that too I believe.

Yes, you read that correctly – 3 years . . . .

This of course, is the flat that has produced the bills I am now having to “fight” these legal and financial battles for.

I put “fight” in commas too, because I have so little ability to fight this.

As well as all the pages of physical symptoms I have with Severe ME, the awful cognitive dysfunction (AKA brain fog) prevents me being able to express myself or remember things when I most need to. Well, it causes problems for me all the time of course. Its very frustrating not to be able to remember stuff I have just read in a book, or having to re-read an email 5 times, or cannot digest something just heard on TV perhaps. It is miserable actually – but not essential in the way it will be in a court case.

The legal battle the firm of property factors are waging against me – is now in the 2nd part.

This firm (I will call them Apollo Property – not their real name) are suing me in 3 stages for factors bills, charges and “estimated” bills for communal maintenance/repairs. The total I think, adds up to somewhere between £9000 and £10000.

I think the reason they are doing it in 3 parts is so it comes under what is called the Simple Procedure in Scotland. It used to be called something like Small Claims. Either way, it is dealt with by the Sherriff Court. And I think the legal charges for the person bringing the action are cheaper than a normal court case. And the top limit for these types of cases I’m told are £5000.

So I am assuming that is why Apollo are doing it in this way.

It makes no difference to me really – as I have no funds with which to pay any of this. And would never have expected to be liable to pay these things. No reasonable person would surely ?

As I mentioned in this post, IF the flat had still been tenanted – the tenant’s rents would have been taken over by the Trustee. But I would still be liable to pay bills like these factors bills – from fresh air .

No reasonable person would expect this to be the position.

And I still don’t know for sure if this actually IS the legal position.

The previous solicitor I had requested to send or email me the specific legislation relating to this, ie. The Act and section, paragraph etc, where this is stated and detailed. So I could read it myself – as it seems so unbelievable.

He hasn’t replied.

But then he has been paid.

You have to pay the legal fees in advance and ongoing for this type of legal assistance. You do not get a bill at the end. In the way you usually do when buying or selling a property.

For this 2nd Stage – Apollo are claiming approx £5000.

For “estimated” bills for communal repairs and maintenance.

I don’t understand how it can be estimated – you would think they must know what they have paid out exactly ?

And is legal detail not meant to be accurate and specific ? I thought that the whole essence of legal stuff was the preciseness of the detail ?

So I am baffled by this.

Ironically, the whole communal area where this flat in Motherwell is located had, as I understood, been allowed to go downhill. And this was probably a result of the previous factors failing to carry out any maintenance or repairs over a period of a few years. (They eventually went into Administration and the current factors Apollo took over.) And of course, this would be why the letting agent I used said they just couldn’t get any decent tenants for the flat. And it had sat empty for quite some time before 2014.

No landlord would just choose to have a property sitting empty. Just saying . . .

At this particular scheme where my flat was – there are 3 small blocks of flats. Each with 11 flats in them.

They would all have needed similar work to mine I am pretty sure. So anything I am being charged for can be multiplied by 11 for definite. And then by 3, as 3 blocks.

Very recently it also came to light these factors Apollo are also charging the mortgage lender a sum of £16280 which they want paid to them from the sale of the flat.

(The lender finally repossessed it in March this year, and it was sold in July. )

The only detail Apollo seem to have given the bank’s solicitors is vague descriptions like “essential maintenance” and “charges”.

So that means the total of these repairs for my flat = £5000 + £16280

= £21280

And for the full block (as communal works)

X 11 flats = £234,080

And for the scheme of 3 blocks :

An absolutely whopping £702,240 . . . . !!

These figures seem astronomical.

I didn’t mean to type so much detail and make this into such a long post. But my head is spinning with all of this . . . .

And how to fight it with so little energy.

The pie chart in the picture at the top is a screen shot I took from an app called ME/CFS App. I try to record my daily energy use on it – in the hope of it helping me in the future. In doing things like tracking my level of activity to try to prevent the damaging crashes after activity. And maybe as a visual aid perhaps to show a GP of how my life is.

I’ve been doing this off and on for a few years.

The dark blue is the amount of time I am either sleeping – or completely disabled.

Possibly resting or recovering from doing stuff, but certainly unable to “do” anything at all. Not even listen to soft music, certainly not read.

Just totally non-functional.

And this is at least 80% of my life.

Probably more actually – as you fill in the areas of “activity” in 30 min boxes. Nearly everything is a high or medium energy activity for me. A low energy activity may be listening to meditation music lying down. Or maybe eating food.

A simple text message might take me 20 mins to type out – but I would probably fill a 30 mins box for this on the App. So I tend to overstate my time being active.

I imagine my actual level of functioning is around 10 % .

Which is a pretty shit life – lets be honest.

10% is the figure the App keeps telling me is my baseline. I don’t even know what “baseline” means, as haven’t had enough spare energy to read all the instructions in 2 or 3 years.

So anyway – I’m probably trying to fight this legal battle with Apollo Factors while being functional only 10% of the time.

Not to mention the firm of Debt Collectors now employed by the Council for Motherwell as well.

I don’t feel very hopeful.

But its good to vent . . . .

And if the sheer effort of typing all this gets some of this horror out of my head, and reduces the number of nights a week I have exhausting nightmares – then it has been worthwhile for me.

Sorry its such a long read.

Death of another ME sufferer

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I wanted to do this post about the very sad death of Jodi Bassett who was a long term sufferer with Severe ME. Probably Very Severe ME.

She died on 11th June 2016.
She was just 40.
She had suffered from Severe ME since she was 19.

She created an amazing and comprehensive website called The Hummingbirds Foundation For ME.
http://www.hfme.org.
To help others.

I think this was mainly done from her bed as she was so ill and disabled by her ME.
To quote from her website, its purpose was :

” Fighting for recognition of ME. And for patients to be awarded the same basic human rights as those with similar neurological diseases such as M.S. ”

I’ve only been able to read tiny bits of the site because of my own symptoms being very bad a lot of the time.

Jodi explained on the website

” I’m 100% housebound and 99.5% bedbound.
Yet like so many other ME sufferers I have had to fight so hard just to try to get even basic help and understanding from doctors, friends and family members ” .

That sums it up really.
The almost impossible position that people with ME are in.
We have to fight so hard for anything.
But the exertion makes us even more ill.
Such a vicious circle.

I’ve given personal examples of this throughout my blog.

The news about Jodi’s death I read on twitter. Where I get most news.
There were many tweets about it on Twitter.

People were very saddened by the news.

In the meantime I wanted to help raise awareness.

And express my sadness for Jodi and so many others who have died.

R.I.P Jodi

Voices From The Shadows DVD

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It’s Jan 3rd 2014.

I have just finished watching the dvd of Voices From The Shadows.
Probably a year after many people have seen it – I know.
I had always meant to buy this, but 2013 was a very bad year and I managed to do very few things I wanted to.

A fellow sufferer had her husband deliver this it me to watch after I sent her a Xmas card. And had mentioned how bad I had been over the last year or two.
(I was very touched by her thinking to do this, as she is affected more severely than me.)

I had planned to get my husband to watch this with me, but then decided to watch it on my own first.
And I’m relieved I did as it was upsetting.

I thought I had become slightly hardened by now to all the tragic stories of people with severe CFS and severe ME. NB. I don’t mean that the way it sounds.
Its not thru lack of interest, or ignorance, or lack of experience.
Totally the opposite.

This last year 2013 has been the worst I have had in a long time with my CFS. If not THE worst.
Talking to fellow sufferers on twitter over the last 2 years, or just reading what they are saying, opened my eyes to a whole world of people suffering on a similar level to myself. In many cases, much worse than myself.
And I have read many peoples’ blogs too.

It has all helped me no end, but some of the stories and experiences have been awful.

So I guess I thought I would watch this dvd and find it very interesting, totally relevant and hugely worthwhile. But I wouldn’t get too emotional about it – because of all the stuff I have learned over the last few years. And gone thru myself.
Plus we all know the treatment of ME and CFS by the medical profession in general has been pretty rubbish – don’t we? (That’s addressed to fellow sufferers of course.)

But here I am at 2am – compelled to start typing this blogpost.

After I finished watching the film (approx 1 hour long) I just sat with my head in my hands on the sofa for a wee while.

Feeling emotionally drained and sad – but then fired up with anger.
(And anger was one of the reasons I started this Blog in the first place.)

For me, the worst bit in the whole film was listening to the voice of Sophia Mirza.

In the recording made when the people came to section her and remove her to a mental institution. Against her, and her mother’s, will.
(
The people being her GP, a social worker and a psychiatrist. And policemen.)

Sophia was the 1st person in the UK to have Chronic Fatigue Syndrome recorded on her death certificate.
I had read about the tragic story of Sophia before and read thru the excellent website set up by her mother Criona, at : www.sophiaandme.org.uk.

I had already read about the awful mis-treatment of this young woman by all the medical professionals involved. And how she ended up dying at the young age of 32 when her ME deteriorated to such an extent her body could not recover.

On this website is a transcript of a full recording made on the day when she was unbelievably sectioned. On 11 July 2003.
And I had read it all, and it was awful.

But hearing her actual voice in the film was even worse. So painful to listen to.
It made the tragedy of her story all the more real. A tragedy that should have been preventable.
But instead the medical mis-treatment caused her ME to deteriorate to such an extent that she just couldn’t recover from it.

What a waste of a young life.

The tears eventually came, and lasted some time.
But then I would challenge anyone with this wretched condition not to shed tears, listening to the actual pleas of this young woman :
“I’m an ME patient, not a mental health patient” she keeps saying. And her heart-breaking pleas not to take her away, how it will make her worse.
And of course, it did make her worse. It killed her.

Sophia’s story is actually like something out of a horror film.

The film explained something for me I never understood before, ie. why her mother’s complaint to the General Medical Council (after her death) was not upheld .
The answer was so blindingly obvious that I almost smacked myself across the head :

The people at the GMC dealing with the complaint were psychiatrists . . .

You couldn’t make this up. How could this have been allowed ?

The explanation about psychiatrists on the GMC ruled on the complaint = the anger I am still feeling right now.

But this is just one part of the film and the people featured in it.
There is much more. All awful stories.

I don’t have enough energy to write any more just now. But my anger was so stirred up I had to write this post.
I think everyone with ME and CFS should buy this film and make at least one other person (a non-sufferer ) watch it.

To raise awareness.

Feeling Sorry For Myself Today !

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Ok I confess I was feeling a bit sorry for myself today. But its allowed at times isn’t it ?

Reasons :

1) Now Friday night and I haven’t been outside the house since last Sunday. (Actually that is just 5 days which is better than some weeks. But still not great.)

2) I am managing to work (for myself) but doing it poorly. Backlog of work just gets bigger and bigger !

3) My life for such a long time now has been :
Work – too much for me – unwell – crash – rest – recover a bit
Then start all over again.

4) I just cannot get a proper break to allow myself to get better – or work towards it. If I stop for 1 or 2 days (when CFS forces me to) the work backlog and problems get worse. And makes it even harder when I restart a day or two later. I don’t want to keep going on about this as I know I’ve mentioned it before – but it feels unresolvable just now.

5) Have so little energy or time left over to do anything nice or fun – apart from work, work, work.
Not the life I would have chosen.

5) I was guilty of dwelling today on how many days of my life have been “lost” because of this bloody CFS.
By lost – I don’t mean days I haven’t got out the house. These are very common because I work from home, then have no energy left. I mean the days (like today) when most of it has been spent being unable to do almost anything (even work). And have been in and out of bed most of the time. (Still in my PJs now.)

6) Often feel the outside world has no idea what my life is like.
For instance neighbours that I haven’t managed to chat with properly for ages probably think I’m a bit unsociable. Some friends I’m sure have taken offence that I haven’t been in contact for ages. Etc etc
And my husband tends to play it down if people ask. He will say things like “she gets a bit tired” or “she tries her best”. Neither of course give any inkling of the reality.
NB. This is a difficult area for me and always has been.
I don’t know if I can yet explain it properly. You see its not that I am looking for attention or sympathy. But I often feel that hardly anyone knows how hard I am trying – and how hard it is day to day. And I am so sensitive at anyone thinking I’m lazy or not trying.

7) Sometimes I feel scared I could slip into a “severe CFS” state and won’t be able to pull myself back. If things in my life don’t improve and the day to day stress lifts a bit. This can’t happen on its own I know – and I am trying so hard and so many things. But these take up even more energy.

8) I keep saying “I will get there” and “I will keep going” . But some days I don‘t believe myself.

9) I was also dwelling (too much) on the way so many people treat you if you have CFS or ME. Not everyone by any means – but so many people.
Hubby once said to me “Anne, people are bored, don’t understand and are not interested”.
A young girl (young teens) with ME put it very simply in an article I read recently. She said “people have not been very nice to me since I got ME”.
Both of these sum it up at times . . . .

Reasons For Blog

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A few days ago I was reflecting on my reasons for starting this blog. I said the main reason was for myself – to de-stress. And this is true. I also said I wasn’t bothered if people read it or not – well this wasn’t totally true. I would like people to read it.

Because :

1) I am so anxious for people to know I am not lazy.
This is something I am sensitive about – but it is because of the treatment I have encountered over the years. Many years.

2) So people know what I do – re working with property.
I work for myself, by myself, at home – and sometimes feel a bit removed from the outside world. Doing it with CFS isn’t always easy. Its not that I’m craving attention – but nobody likes to feel they are hidden away with people having no idea what they do all day.

3) To help friends understand why it has often been difficult to have a proper social life.
I am not choosing not to see them. And I am trying to get things back on an even keel.

Other reasons :

4) To help get the word out about the awful treatment of CFS and ME. And to add my voice to the calls for recognition from : the government, health professionals, and the general public.
At the moment the situation is a national and world-wide scandal. People with very severe CFS and ME are actually dying – and it is ignored. Just hidden away.

5) To connect with others with CFS or ME.
Joining twitter opened my eyes to how many people were out there who wanted to talk and share experiences. And just to connect.

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