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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.

Bankruptcy in Scotland:  The law is an ass ? 

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I enjoy writing as it can be theraputic. But this is only the 3rd post I have done this year. And it will soon be the end of June. Half the year gone.

This is because I am still horribly limited by my ME and can manage to do very little. Everything takes me ages to recover from. Maybe 90% of the time I’m sleeping, resting or recovering. Some days a bit better. And some even worse – when in bed 24 hours out of 24.

Resting or recovering isn’t much different from sleep for me. Well, apart from not having nightmares when awake. But I’m usually unable to do anything. Just pretty much non-functional. It feels like attempting anything, no matter how small, triggers off an increase in symptons. Which is miserable.

The Bankruptcy stuff is STILL ongoing. Since 2014. Shock after shock after shock. A constant battering to my health. And my husband’s health. It has been endless.

And is actually getting worse.

In my 2nd last post I had appealed for a solicitor to help. Because I was being sued by a property factor for their factors bills dating back to 2014. These bills were for their regular management charges, plus general repairs and maintenance. And of course I was very shocked at this.

The property was one of my 14 buy-to-let flats which were handed over to the Trustee In Bankruptcy in 2014. When my health totally crashed. All correspondence, bills, statements etc have been getting posted onto the Trustee every week since 2014. (By my husband as I have rarely been well enough to get out.) And the point of this was that the Trustee would deal with everything. Handle everything.

That is what I was told by the bankruptcy Adviser. That was why I was advised that bankruptcy was the best option for me, as I understood it. And why I accepted this. To “give away” the properties and all responsibility for them. I was too unwell to even think about trying to sell them myself. I wouldn’t have wanted to do this anyway at that time. I would have waited until the property values had improved. As to sell then would just have resulted in many shortfalls against the mortgages.

I know I have laboured this point before. In this post – The Bankruptcy Stuff Keeps Getting worse.

And this one – A Long Slow Road. (This is quite a long post about various things. The comments about Bankruptcy are in the 2nd section.)

And this one – Unwanted Visitors.

And this one – My Life So Far – Not What I Expected.

But it is all the more shocking to me the more that happens and the more I find out.

IF I understand correctly what has happened recently : It seems the original owner of the property (ie. me) is still liable for payment of bills like Factors bills from ONE DAY after their bankruptcy date. Up until the date the flat is either sold by the Trustee or legally taken back (ie. repossessed) by the mortgage lender. Even if this takes years and years.

In this particular case it has taken years. From 2014 until March 2017 in the case of this flat. Almost 3 years. 3 years for the mortgage lender to repossess a property which was empty. Not tenanted. And no mortgage payments getting paid on it. And its not just this flat. As I understand it – there are still 2 other flats left. Therefore it would seem I still legally own these also.

Jesus wept . . . .

Just to talk about this a bit further.

As I understand it – all rents that were paid by tenants are taken by the Trustee. Even if any had been paid to me by the letting agents – the Trustee still gets them. As bank accounts get frozen.

But I am still meant to (legally) pay all these bills. I mean, seriously . . . . ? And how am I meant to do this ? Or any other ex-landlord in the same situation.

To give a more extreme (but simple) example :

If a bankrupt landlord owned 100 flats. And they were all tenanted. All these rents would be taken by the Trustee In Bankruptcy. And if the Trustee doesn’t sell the flats themselves and the mortgage lender takes 3 years to actually repossess them – the bankrupt ex-landlord is still liable for all these bills. So the Trustee would get 3600 rents (monthly rents for 3 years). But the landlord would still be legally liable to pay 3600 factors bills (if the factors bill monthly). Does he/she magic the money to pay these out of thin air ?

IF this is the law – then the law really is an ass. (I’m in Scotland. I don’t know if it is the same in England.) I can still hardly believe it. It seems so unreasonable.

I have requested my solicitor to email me the details of where this is wtitten in the bankruptcy legislation. ie. The name of the Act and location (section, paragraph, whatever) of where this be found. Not that I really know what I’ll do with this once I have it. But I need to be able to actually see it for myself. It just seems too unbelievable.

Another point is : If any flats have been empty (not tenanted) a while – it gets even worse. As council tax bills build up too after exemption periods have been exhausted.

This then implies that utility bills for any empty flats, or empty periods, are my responsibility too. Where the supplier applies a standing charge.

This particular flat had been empty for quite a while before it was given to the Trustee in 2014. Possibly a year, but maybe longer. This was because the letting agent could not get any tenants for it. As I think the communal areas had deteriorated and fallen into a poor condition. This was because the previous firm of property Factors (who eventually went bankrupt themselves) failed to deal with any repairs or maintenance.

The irony of this is not lost on me . . .

Now I do realise (or assume) that when most people go Bankrupt they do not have a choice. Because finances and debts have got to such a position where there is just no way to rescue things.

But my situation was different.

As mentioned in previous posts – our assets well exceeded the debts. But voluntary Bankruptcy was taken purely because the Bankruptcy Adviser clearly said that the Trustee would deal with everything. Take everything off my hands. All mail, demands, forthcoming threats (once things stopped getting paid), phone calls, etc, just had to be passed onto the Trustee. (And we knew we had to pay a big price for this financially and emotionally. The loss of our home of 15 years and all the equity in it. It was no easy option or get-out.)

At the time of getting the bankruptcy advice nothing was in arrears. Everything was getting paid and there had been no missed payments. I was even still getting 0% credit card offers thru. My credit score (with Experian) had been 999 (the highest in the Excellent range) for a long time. Although it had dropped down a level by early 2014 – to the Very Good range I think. I suspect because the amount of capital debt was rising, even though nothing was in arrears. It was getting harder though – but that was more because of my health. This previous post from Feb 2013 gives an example.

I know they say ignorance of the law is no excuse. And it seems to be no defence either. But seriously – would anyone reasonably expect this to be the case? Even my administrator at the Trustee said she would dispute the claim because it wasn’t my fault all those factors bills had built up. Plus the fact that I have no income or savings with which to pay, or even make a payment arrangement. (This wasn’t legal advice of course. She told me the Trustee do not have any in-house solicitors that could advise me.)

To add insult to injury – I have no way of knowing if any of the work billed for by these Factors has actually been done. Plus – I don’t even have the bills I am being forced to pay. They were all sent onto the Trustee over the last 3 years. (Everything has been sent onto them. It is what we were told to do.) Then everything regarding the Factors claim was sent to the solicitor.

Words cannot describe how unjust this whole situation feels.

Now this same firm of Factors have started more court proceedings for “planned maintenance” bills. The next one is for £4900.00 and has been allocated a claim number for court. And they have stated they will be further suing for yet another amount for “planned and ongoing maintenance” – this time for a sum below £2000.00 .

In addition, the council for the Motherwell area where this flat is (North Lanarkshire Council) have now sent me a demand for almost £2600.00 for council tax. It was delivered by sherriff officers acting for the council. I sent it to the Trustee right away. As they are still administering my Bankruptcy. They have now sent it back to me and suggested I ask the solicitor about it.

We cannot afford to pay for any more legal help. Husband has been working 7 days a week for a while now to be able to pay for the recent legal fees. And towards repaying the friend who very kindly gave us a cheque to settle the factors demand.

Neither of us would be able to obain any loans now as our credit records will be utterly trashed as a consequence of the bankruptcy. And hubby working 7 days a week is hard – given that I can hardly do anything around the house. And he does almost everything.

Just a week or two ago he had the lovely task of emptying plastic jugs I was reduced to using in the bedroom for toileting – as I was too ill to manage to the bathroom. Too much info I know, but this is how poor my health and energy has been. And scrunching up A4 envelopes so I could use them to breathe into (like a paper bag) when I felt panic attacks coming on.

How much more can he be expected to do?

And how much more battering can my health take ? Or husband’s.

Trying to communicate with the solicitor over the last few months has taken a massive amount out of me. If I was well enough to do this sort of thing I wouldn’t have needed to consider voluntary bankruptcy in the first place.

It was made harder for me as I don’t think they could understand how bad ME actually is, especially when symptoms are severe. For example : how do you sucessfully communicate how bad your brain fog (aka cognitive dysfunction) is – when this is one of my worst symptoms?

Sometines I wondered if they actually thought I was exagerrating about how limited I am. And how long it takes me to “recover” from the exertion involved in a simple thing like an email or a phone conversation. A simple thing to them but a very exhausting thing for me. Always triggering a big worsening of ME symptoms and being more ill for days on end. And I found myself trying to explain over and over how badly limited I am. Then giving examples. Not because I was looking for sympathy or anything. But because all this legal and court stuff have time limits set. And I was terrified of what would happen if I couldn’t do things in time. This was so exhausting and I had been hoping for some reassurance that some accommodations could be made if needed.

I don’t know what to do now.

I’m really not well enough to use the internet to look for ideas. Or make longish phone calls. I don’t mean these things are impossible 100% of the time. But I can only manage a very short time doing things without it making me more ill. Then I’m knocked out for days. And I get nothing done.

I can’t think straight about any of this.

The only thing I do know for sure – is that bankruptcy has been a terrible option in my situation. 3 years of Hell for nothing. Worse than nothing. As the worsening of my health and the loss of most of my life for these years.

Any suggestions would be welcome. (About the forthcoming claims.) Any info that might be helpful would be great, eg. phone numbers, websites, email addresses.

Thanks for reading.

PS. I haven’t put the links in yet – where I’ve mentioned previous posts. Will add soon.

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 very badly 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 . . . .

A typical day 

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Yesterday was a typical day. With me exhausted although I managed to do very little.

Morning :

Woke at 7.15 am. Had a cereal bar and water for breakfast. (Keep these by the bed.) Then sent a few text messages. Then had a quick look at Twitter (thats usually where I get any news about whats happening in the world). And re-tweeted a few tweets by other people to help raise awareness about ME or CFS. I don’t manage to talk to people on twitter much. It’s usually too exhausting for me. But retweeting some things makes me feel I am doing something. Taking part.

By 9 am I was pretty tired and that was all I had done. Oh – and I had brushed my teeth too. The headache, which had started after about two minutes of using my mobile phone, was now quite bad. (Even thinking and typing a text can be an exhausting activity.) And the exertion of brushing my teeth had made me out of breath and the movement had made the headache even worse. I had to give in and rest. Lying down in bed again. And took painkillers.

I had to rest in bed until 3pm. Lying down, doing nothing, no stimulation at all, sleeping much of the time. 6 hours rest/sleep needed after 90 mins of “activity”. I put activity in commas because in no normal well person’s world would it take 90 mins to send 4 texts and 4 retweets on twitter. And brush teeth.

Afternoon :

Got up around 3 pm. Managed to freshen up using body wipes (wet wipes). And got dressed. Eat a banana and a babybel cheese for lunch. And drank more water. Lots of water. As just the exertion of freshening up and getting dressed made me out of breath and thirsty. And I was tiring again. Tried to fight the urge to rest – as I was hardly up any time. Tidied up the bedroom, opened window and folded the duvet back to air the bed. Forced to rest as now very tired, even more out of breath, and chest heavy. Plus neck pain.

Sat on sofa in living room for about an hour or more. Just resting, with neck and head propped up and supported with cushions (to try to ease neck pain). I was so tired again that I wanted to lie down on the sofa. But the feeling of weight on my chest got worse when I tried this.

By 5 pm I wasn’t really feeling much better. But I needed to eat something more. A sickly headache was starting up, and I was aware that I hadn’t eaten very much today. Which was maybe now partly causing the headache, or making it worse. (I always feel awful if I go too long without food.)

In the kitchen I just put some cheese and cold ham on a plate. With some cherry tomatoes. And a muffin. Ideally I would have liked to make a sandwich – but I couldn’t stand up long enough to do this. So it was a case of just grabbing what I could. After eating the food I felt a bit better. And was able to make a cup of tea. This helped ease the headache a bit – but the other symptons were still there.

I wanted to do something (anything) to try and distract my attention away from the symptons. This isn’t easy to do. Because doing anything physical is very hard with the chest symptoms. And usually increases them and I end up even more breathless with a worse “weight” on the chest. Or a tight restricted feeling. Reading wasn’t possible as I knew it would trigger more headaches. And it is hard to read and remember any of it with the level of “brain fog” that I have with ME. Watching any TV was out of the question too. As i couldn’t tolerate the sound, or any bright colours or movement on the screen.

So I eventually decided to listen to a recording from a website from an American Life Coach/trainer/motivational person. I had come across this on twitter and had saved the link, as thought it might be helpful. To be honest, I have probably saved hundreds of interesting looking links to things over the years on twitter. But I haven’t been well enough to read or listen to most of them.

With ME – the gap between what I would like to do and what I can actually do is huge. And a big source of frustration.

Early Evening :

I listened to the 30 min recording. And it was good – I liked it. I immediately forgot most if it of course (damn brain fog . . .). But I will listen to it again for sure. It was about taking full 100% responsibility for everything that has happened in your life. Especially the bad stuff. And losing any kind of “victim” mindset. It was good and I can definetely see the value in this. As I know I am holding onto a lot of anger, resentment and distress. And I still have so many nightmares about the bankruptcy (which is still ongoing). And about bad experiences with medical people. Plus the attempted PIP claim and terrible experience with Atos (nurse from Hell) just about finished me off.

But maybe even listening for 30 mins was too much for me. Not only did my headache and neck pain come back with a vengeance, but my head was spinning. And my mind racing with the memories of all the bad things that have happened over all the years I’ve had ME. All the losses. All the medical mistreatment. The possibly ill-advised Bankruptcy (bankruptcy in reverse really). My marriage almost breaking (several times) with the strain of everything. Then my brain was running through memories from the Property years – some rubbish letting agents, bad tenants (one actual tenant from hell), scum tradesmen, etc etc. A lot of bad memories. Or at least I was only recalling all the bad ones at this point.

My energy just totally crashed. And I had to take more painkillers and get into bed. Just as my husband got home from work. Luckily he would make the dinner. (He always has to make the dinner, and I’m really grateful for this.)

I didn’t manage to get up again until 11.30 pm. Still felt rough but was hungry and thirsty. Hubby had eaten his dinner ages ago and was about to get ready for bed. So I warmed my dinner up in the microwave and eat it at midnight. Not ideal . . . But very grateful that hubby had cooked it. And also grateful (or relieved) that I had been able to get back up and eat. There have been many nights I couldn’t do this at all. And had to eat in bed, sometimes in a lying down position. Or just too exhausted to eat at all. Over the last few years.

But limited and small as this day was – I would rate this as an OK day. Out of a choice of Good, Bad or OK.

I have had much worse days than this over the last few years.

And I have had better days too.

And hope to have more better ones.

But it shows how far removed our lives are from normal levels of ability when we have ME. In what other illnesses would a person class their day as OK when all they could manage to do was :

Send a few texts messages, be on twitter for 10 mins, up and out of bed for only 3 or 4 hours (much of this resting), eat some food, listen to a 30 min recording, talk to husband for about 20 mins.

Its not much . . . But as I mentioned – I have had many poorer days than this. And I’m very grateful for the better days.

The Bankruptcy stuff just keeps getting worse . . .

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My brain is exhausted and burned out.
Totally fried.

The never ending Bankruptcy stuff is still going on. No end in sight – 2 years now.
In fact its worse than that.

I have a letter from the Trustee In Bankruptcy dated a month ago. It states that I may be made bankrupt AGAIN. Or sequestrated – to use the correct Scottish term.
It’s not definite, but still shocking to read.

The whole reason for the Bankruptcy (which was voluntary) was because my health was so poor at the start of 2014.
My ME was severe and I was too ill to carry on. I couldn’t do anything more.
I know I keep repeating this.
Sorry.

Because my health has been so bad,  I haven’t been able to communicate effectively with the Trustee In Bankruptcy. Any time I have tried it goes wrong.
The “brain fog” that comes with ME has been too severe and has ruined any communication attempts.

From Day One I had begged for everything in writing. Because of the brain fog.
But it doesn’t happen.
(Its often very hard for me to read stuff too, and digest the information. But at least if I have a letter or email I can read it over and over. 10 times if needed. Even then, I may still not understand it because of my ME. But there would be a bit more chance of it.)

Many times over the last 2 years I’ve been asked to do things I couldn’t do.
Or provide information I couldn’t provide.
Or to read long documents and sign – which I couldn’t read.
All because I’ve been too unwell.

The WHOLE POINT of the voluntary Bankruptcy was to hand everything over to the Trustee.
So that they would deal with EVERYTHING.
Sign EVERYTHING.
Take EVERYTHING to do with the 15 properties away from me.

I know I have mentioned this before too.
Sorry.

Then I’ve made myself even more ill with trying to explain this to them. That I’m not able to deal with anything.
Over and over.

And to the Bankruptcy Adviser.

And to my husband.
Because they will phone him at work (while he is dealing with gas and the public) and he just agrees to anything. Says “that will be fine” – as he wants to be helpful.
Then I get put under pressure to do or provide what was asked for.
And I’m usually not able to do it.
Or not even sure what I’m being asked to do.
Or why.
As usually nothing in writing. No guidance. No explanation.

The stress of this has been abysmal.
Utterly abysmal.
It has almost finished our marriage.

For most of the last 10 weeks we haven’t been able to live under the same roof.
No choice any longer for me.
We haven’t split up – we just can’t be in the same place while this is going on.
NB. This is no easy choice.
Given that I can hardly look after myself. With food etc. So I’m eating quite poorly much of the time. And I’m in bed so much.
And it is very lonely. As I may speak to not a single person all week until hubby visits at the weekend.

But the stress has been too much for too long.
I felt I was getting pushed to the point where I was at risk of having a stroke or a heart attack. Or a total psychiatric breakdown.

Many times in this blog I have talked about the severe headaches and the disabling chest pains. Plus all the nightmares.
But in real life nobody takes anything I say seriously.

So many people with ME or CFS have an endless battle with medical professionals to be taken seriously.
I have had that too.
But I also seem to be in a battle with the Trustee In Bankruptcy. And the Bankruptcy Adviser (although I’ve given up on that now.)
And even with my own husband at times.
Just to be taken seriously in what I’m saying. Begging them all to hear me.

I’m so traumatised and angered by the whole Bankruptcy thing that me and my husband can’t discuss it at all now. I go into a complete meltdown every single time.
Then my ME is even worse afterwards.

Plus I’m fearful for my husband’s health too. He has high blood pressure now, caused by all of this I’m sure. And needs various medications for it.
All the rows and shocks are very bad for him too I’m sure.

I need to be able to do a letter of response to the Trustee In Bankruptcy. Because there seem to have been some misunderstandings.
They seem to think I have refused to do some things. Thereby “not co-operating” with them. This can be very serious – that much I do know.
It’s not true of course.
And I have to be able to tell them this.
But I can’t.

Because my brain will not work.

A simple letter, and yet I cannot manage this.
I will keep trying of course. But God knows how long this will take me.

This situation really is not fair.

To say I could be made Bankrupt again – because I haven’t been well enough to do things. Or do them quickly enough.
And the whole Bankruptcy was because I could hardly do anything any longer.

If I was able to make phone calls, read letters and documents, and reply clearly and in a timely manner – I would not have needed voluntary Bankruptcy in the first place.

This has been the worst experience of my life.
Because it has all been so out of control to me. Filled with shocks.

I feel like I’m being hammered all the time.
Like being made to walk on broken legs. Over and over.
But its not my legs.
It’s my brain and automatic nervous system that are getting more damaged every time.

Missing from our own lives

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This was the scene in one American city yesterday – just one city.
For a day of worldwide protest called #MissingMillions.
Update :
Photo removed – see notes in Replies section. Sorry for confusion.
I will try to insert another photo into this post – when I have the energy to work out how to do it. Not very good with tech stuff like this . . . !

The shoes belong to people with ME who sent them in. Or got someone to send them. (I didn’t even manage to do that.)
To represent the fact that so many of us with ME are not well enough to attend a protest. Even if it was on our doorstep.

We are missing from our own lives.

And from the lives of our friends and family. Even much of the time from the lives of our husbands, wives or partners.

We are pretty much invisible to the world.

I am exhausted after just following it on twitter yesterday.
To the extent that I haven’t been able to wash, get dressed, or eat any proper food today. Just snacks.
(But I have had many days where I have been much worse than this.)

I wanted to do this blogpost as it was a very emotional thing to see all the photos of empty shoes.
Incredibly emotional.
So many lives going to waste.
And I bet all these shoes only represent a small percentage of the number of sufferers.

It was uplifting too.
And I felt less alone than I have done in a long while.

Surely this will help society realise that we have a serious illness which is very disabling ?

And that we’re not just a bit tired.
Or having a nice sleep in bed.

I wish . . . .

ME Awareness Day 2016 : Comments from sufferers

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I wanted to do something for today but am very lacking in physical and mental energy.
So I am just posting a selection of comments from people that I came across on Twitter.
I think these well describe the situation we are in.

“Many people with ME are suffering against a backdrop of ignorance and disbelief”
Sarah, England

“I’ve been ill for 10 years but was only diagnosed in 2014”
Amelia, UK

“If you phone the NHS seeking a doctor who has any knowledge of this illness, they cannot name one person. Not one”
John, UK

“Daughter has ME in UK and little support. GP commented ‘you’re not that bad are you?’  I told him he only sees her when she is well”
Person in UK

“People with ME doing exercise under medical persuasion have become bedridden and appallingly ill”
John, Scotland

“It is very sad that government have allowed an entire disease to go unchecked for 3 decades”
Kati, Vancouver

“I am only 31 and yet everday things like taking a bath exhaust me”
Mary, USA

“People struggle to comprehend the enormity of the situation of people with ME. It just seems too unbearable”
Nicola, UK

“Diagnosed with breast cancer. Astonished by reactions. Where were all you caring people when I was much more ill with ME/CFS ?”
Linda, Belgium

“I used to be ashamed of this, but I have almost no support. One friend. Daughter sees me once a month. Have severe progressive ME and alone”
Louise, Canada

“I know far too many people who’s loved ones see, disbelieve, make life hell for the person with ME. And leave”
Lindy, area not stated

“So many people have said to me ‘it must be great to stay in bed all day’ . Well No, it actually isn’t”
Female, UK

“Sat on the bathroom floor because I am too tired to dry myself”
Person in UK

“People close to us must also find acceptance : understanding that ME isn’t a mental block and we can’t just run it off”
James, UK

“I’m always amazed at the amount of people who aren’t accepting. The psychosocial view of ME invites judgment on the patient”
Henry, UK

“What does it say about our situation that we have come to EXPECT neglect, disbelief, unprofessionalism and dismissal from doctors ?”
ME Action Network,  Global

“I fought so hard to recover from my broken neck and become a triathlete and Advanced Personal Trainer, yet I cannot beat damn ME. Says it all”
Carmel, England

“I can relate to that. I survived a rare aggressive form of Non-Hodgkins Lymphoma,  but I cannot beat ME”
Female, UK

“Patients are left household, bedbound and even fed by tubes. We as patients have to raise awareness and funding alone for ME/CFS”
Jade, England

“And yet 1 out of every 4 people with ME have lower quality of life than people with heart failure, end stage AIDS, or stage 4 cancer”
Kit, USA

2015 in review

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The WordPress.com stats helper monkeys prepared a 2015 annual report for this blog.

Here's an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 2,300 times in 2015. If it were a cable car, it would take about 38 trips to carry that many people.

Click here to see the complete report.

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.

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