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Needing to be heard

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Its been over 3 months since my last blog post.

I have so much I want to write about but haven’t been able to. Because of all the usual ME symptoms. Profound exhaustion and weakness, pain (mainly the headaches, despite new glasses), appalling brain fog (aka cognitive dysfunction or brain dysfunction) and hyper-sensitivity to using anything like a PC, a tablet, or a mobile phone most of the time. Or looking at a TV screen.

And the fact that stuff done on a good day just goes on to cause a crash the next day again. And then I need time to recover from this.
An endless vicious circle . . .

These symptoms have been making my life a misery for a long time now – years I think.

  • I haven’t been outside in the fresh air for 2 months now. Not by choice.

  • I am still having to spend a huge amount of time in bed. Not by choice.

  • I get to see or speak with virtually nobody apart from my husband.
    Not by choice.
    eg. In the last 6 weeks I have been in the company of 2 other people. For maybe 9 hours in total. Spread over two occasions. (This is less than 1% of the time.)
    Even one of these occasions probably wouldn’t have happened unless hubby had been present. As I think the visitors wanted to see him rather than me.
    As he says – “everyone likes me” !
    He is right of course – people do like him. He is always friendly and fun. And has energy. And makes a joke about everything – never serious.
    I must seem dismal by comparison.

    • I can hardly read anything – apart from links to short news articles (usually via twitter).

Reading books is still very hard because of everything involved with the “brain fog” – as well as the physical exhaustion of course.

For instance : I have been trying to read Eat Pray Love by Elizabeth Gilbert for possibly almost a year now. I first bought the kindle version and downloaded it onto my tablet. To read in bed, usually lying down. But I had to give up on this as (1) the tablet was often too heavy for me to hold, and (2) I very often can’t tolerate the brightness from it, even on lowest setting.
So I then bought the book (again) – the paperback version this time. By the time I managed to do this (as using the internet can be torture) I had to start reading it from the beginning again. And I’m still struggling.

I can’t read comfortably with my new £310 varifocal glasses (thanks Specsavers). So I have to read with my glasses off which = headaches. And the brain fog means I have to keep reading and re-reading the same bits. Over and over. And this isn’t a difficult or challenging book. Its an enjoyable easy read – or should be.

  • Using the Internet is torture most of the time – because of my hypersensitivity to bright screens. And pushing on triggers headaches very fast. Then it feels like my whole automatic nervous system goes haywire, heart pounding, feeling wired and hyper, etc.

  • Using emails to keep in touch with friends is also hard and exhausting. Usually its just too much.
    I think the last email I did was in December. To a friend I hadn’t seen since the previous December. I was concerned incase there would be a short-notice visit over the Xmas period. As there would be so little chance I’d be well enough for this. So I tried to explain this in the email, because I did hope to see them.
    With headaches, brain fog and the torture of the bright screen – the email took me a whole evening to do. About 5 hours. It wasn’t massively long. But I needed so many breaks.
    And I don’t think the person has even read it yet. As her laptop was out of order.

  • Watching TV : this I can do in small doses. There was a long period when it was almost totally intolerable for me. But I still struggle with bright colour, movement on the screen, sound changes between channels, or at adverts, etc. I have the final of Strictly Come Dancing recorded from December. I wanted so much to watch this – especially as my long time favourite Anton Du Beke was in the final for his first time. Ok, I know now that he didn’t win. But I do still want to watch it. However, as yet this hasn’t been possible for me.

  • Phone Calls : mostly impossible and/or pointless – as I struggle to remember anything. Important calls are pointless – the more important the call the worse my brain fog seems to become. And people get so annoyed when I have to ask for a letter or email to confirm everything said . . . !

    • Music : even listening to music can be too much. With sound sensitivity. If I’m in bed then my option would be listen to music on my mobile from U-Tube. There is a whole world of choice there. But if I’m too sensitive to using my mobile then even this can cause symptoms to worsen.

NB. Not meaning it to sound like I want to spend all my time reading, listening to music, being on the internet, using the phone or email, or watching telly.
Just saying that if I can’t ‘even’ do these small things it makes for a very dry life.
When I can hardly get out or see people. Or do much at all.

How do you stop yourself sinking mentally and emotionally ?

 

On the medical/health front :

  • I am successfully registered with a new GP surgery now. This worked out because they accepted new patients without the need for a face to face visit with the GP or a nurse. Just forms submitted.
    As yet I haven’t been well enough to actually meet the GP or even manage a phone consultation. A few were booked but I had to cancel them every time as not well enough on the day.
    Some meds I’m still being allowed on repeat prescription. Others have been stopped a long time ago, eg. Vitiman D. As I need a blood test check whether I still have a deficiency or not. (Given that I rarely get outside – I tend to assume I will have.)
    Painkillers – I am no better off yet. Still spending £40 or £50 a month on stuff like Panadol Extra. Paracetomals do nothing.
    A big worry is I have no idea what the GP’s view about ME or CFS is. I will just have to hope for the best. (The surgery was chosen because of the easier procedure to join.)

  • New Glasses :
    I prioritised this (over trying to meet new GP) as I hoped that new glasses might help reduce my headaches. The last eye test and new glasses was over 5 years ago.
    I used Specsavers Healthcall as they do home visits. And paid £310 for new varifocal glasses. My distance px had got quite a lot worse. But my reading px had improved. I was told this wasn‘t unusual as sometimes one can compensate for the other.
    Or I think that’s what I was told.
    While I was very grateful for the home visit – I wouldn’t really recommend them.
    Their procedure was difficult to fit in with if you have ME. They couldn’t arrange an appointment with much notice. Because they cover a big area and don’t know where they will be going day to day – until their computer prints off a list for the next day. So they would phone in the afternoon and say “we want to come out tomorrow morning”. This was very difficult with my ME severely affecting me. A lot of the time my phone is off, or on silent. And the whole process (just 2 visits) took around 2 months to manage. Even the 2nd visit to fit the glasses I really wasn’t well enough for. But I agreed as had said No to quite a few other visits.
    And I now have glasses that I cannot comfortably read with . . .
    (Yes, I have emailed them twice after I realised this. With great difficulty. No reply yet.)

  • Smear Test :
    This was very overdue and I also prioritised this over meeting the new GP.
    Mainly because of having blood since 2011 or longer (that I shouldn’t be having). In fact when I started trying to focus on getting this done – I didn’t really have a GP at all.

My last contact with the previous surgery had been that absolutely atrocious phone call I received from a foreign sounding GP following my request for painkillers.
Then I had spent maybe 8 months trying to join a health centre where an ME charity had mentioned there was a good GP.
The GP himself may well have been good (in his treatment of people with ME or CFS) – but the staff were awful. They acted like they had no knowledge, understanding or tolerance for this condition.
The nurse wasn’t very nice and changed the procedure for joining the health centre once I mentioned CFS (as I called it then). Then after 3 different attempts at explaining my health (and why I couldn’t get back into the surgery again) to different receptionists – I had to give up. The 3rd person was the worst. She would either argue with me – or go silent for long spells. And make sighing noises . . .
That last call lasted 9 minutes – I gave up after that. I felt exhausted and demoralised by the whole experience.

So, to get my smear test done I went to the Sandyford Sexual Health Clinic. This was a good solution for me as a friend had told me they were a walk-in clinic. Meaning I wouldn’t be in the position of booking an appointment then having to cancel on the day if not well enough to get there. I phoned to ask what choice of days I would have – as didn’t expect they would do smear tests every day. But unfortunately the walk-in service had ceased just 2 weeks before. This was a service that had been going for maybe 30 years too.

However I got to speak to a nurse over the phone when I explained my dilemma. She was incredibly nice. And went out of her way to tell me to make an appointment anyway, and not to worry if I had to cancel on the day. As cancellations are almost always taken by someone else.

I ended up getting a smear test, a womb biopsy, blood tests and an internal scan. Because of the issue with blood. Everything was fine. I had absolutely no anxiety about any of these tests. (My only anxiety with medical people is when I have to deal with anyone about my ME.)
I dealt with 3 different doctors – 2 at the actual appointments and one over the phone. They were all lovely. Very thorough and very professional.

The contrast between they way they treated me – and they way I’ve been treated over all the years with my ME – was astounding.
I actually send a letter saying thank you afterwards.

But this whole thing (the smear and other tests) took up perhaps a 5 month period. Because of me having to cancel some appointments and then re-arrange them. Like everything else – it was very exhausting for me. But totally worth-while and reassuring.

 

NB.
When I started writing this post I’m sure I had a different point in mind. Rather than just another summary of how shit all these ME symptoms are. And the medical updates.

But I can’t remember what it was and have gone off on a complete tangent here.

Bloody brain fog . . .


Continued :

Actually, the point is coming back now.

It was the fact I discovered I have 2000 followers on Twitter at the weekend.

Now I know this is peanuts compared to :

Stephen Fry – 12 million followers

Duncan Bannatyne – 774000 followers

To use just 2 examples.

But 2000 is a big number to me.

It was a pleasant and much needed boost to my self esteem. Which has been near rock bottom for a while now to be honest.

Its bad enough living such a limited life with so many symptoms day to day. When things have been really bad for years now – then add in the whole Bankruptcy stuff on top of it. (Still ongoing.)

But maybe even worse than this is the fact I feel almost nobody listens to a word I say – in real life. And there are valid reasons I feel this way :

1) Years of being ignored and dismissed by medical professionals.
Since the late 1980’s.
(There is one recent exception to this but I don’t want to jeopardise it by writing about it !)

2) Not being listened to by the Bankruptcy Adviser or the Trustee In Bankruptcy. Despite me using up huge amounts of energy explaining my health position.
Over and over and over.
Since 2014.
To the further detriment of my health.
What has happened is I have been ignored and not really represented at all in this Bankruptcy process. Despite it being about my Property business. And having chosen Voluntary Bankruptcy in an attempt to stop my ME getting even worse.

Again, I have been traumatised by this experience.
The nightmares I had been having for years (presumably because of the medical profession not listening to me) have been increased and intensified by this.

But maybe even worse emotionally is :

3) Not being heard or listened to by people in my life – just pretty much left alone. (Apart from husband of course.)

In the past and recently I have used up so much energy trying to explain stuff to friends, people, etc. About my ME.
Not to bore them to death with it – but just because I want to be able to see them, stay in touch, etc.
But if they don’t understand a bit about how limited I often am it can make things really difficult. And ends up with frustration and possibly annoyance from others.

Even when I was more well and could socialise more – I would often just get talked over or sort of ignored in some situations.
A lot of situations actually.
I have quite a soft voice which doesn’t help matters.
My husband would often say things like “people don’t want to hear about all that”. And I would get cut off.
To clarify : I have no desire to bore folk to death about my health challenges or limits in a social situation. Nobody would. I’m meaning times when it felt necessary.

One example, out of hundreds of situations over the years :

This could be 10 years ago now :
Hubby and I were 2 hours late for a small drinks get together. With people who are very close to hubby – almost like parents. Two people were visiting from Australia. When we eventually arrived there was a bad atmosphere and clearly everyone was upset with us. One person went as far as to say “you shouldn’t have bothered coming at all”.
Wow . . .
The reason for our lateness was I had needed a lot more time than usual to recover and get my strength back after having a shower earlier in the day.
Now, all these people knew I had ME. But like many folk probably didn’t understand how it can limit me. So I tried to explain myself, how it was my fault but really couldn’t be helped, etc.
But I was just shut down, dismissed, talked over, etc.
And we just had to sort of endure everyone’s annoyance and irritation all evening.
Eventually I just gave up trying to speak – as even hubby wasn’t helping things by talking over me !

This is just one example of a type of situation in which I may try to explain a wee bit about how ME affects me.
Not just to talk about it for the fun of it.

This sort of thing would upset me although I tried hard not to let it. To me this was hurtful and rude. But to him it was ok.
But he was usually right I guess – so many people just don’t want to know or hear about anything difficult.
If I expressed any dismay at this I was told I was too sensitive or over-thinking the situation.

He has said to me so many times over the years :

“ People don’t understand, they’re not interested and they don’t care “ . . . .

(But what if they are meant to be friends?)

I think he keeps saying this partly to try and stop me feeling upset (even though it upsets me more every time). And to keep my expectations of people low perhaps. To be more accepting of poor treatment.
Also, maybe to absolve him of not being able to get friends to understand either. (Maybe of not being able to help me with doctors either. Apart from collecting prescriptions etc.)

He says he explains to people “until he’s blue in the face”. But they’re still not interested or don’t understand.
And its just the way it is.

I personally tend to feel “it’s just the way it is” if you have ME or CFS.
Not so much with other serious illnesses?

Needless to say all this hasn’t helped me.
And I’ve used up so much energy trying to understand it. Because I feel I wouldn’t behave that way if situations were reversed. I mean, it doesn’t take much to give out some kind words – does it ?
Or maybe it does.

This has turned into a very long post. Much much longer than planned.
It will take me days to recover from typing this.

But the 2000 twitter followers has inspired me today.
And given me a well needed emotional boost.
Made me realise that some people do want to hear what I say.
And are interested.
And do care.

And it couldn’t have come at a better time. Because I think I was starting to give up – mentally and emotionally.

We all need to feel heard after all.

 

 

 

 

 

 

 

 

 

 

 

” Bullies ” comment and The Lancet

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There was a bit of a row on Twitter yesterday. And reading it (which I could not help) left me feeling angry and upset.
I will probably exhaust myself writing about it here – but it is too important not to.

It involved an editor from The Lancet making some astonishing comments to ME/CFS sufferers. Then actually blocking some people on twitter – so that they could no longer interact with her and The Lancet. Or be able to read anything she was writing about them, or any other health stuff.

The comment which jumped out at me involved an accusation of bullying. Followed up by a 2nd tweet showing she had no knowledge or understanding about ME/CFS at all.
If I have understood things right, her comments were initially in response to an ME sufferer pointing out inaccuracies in a piece that had been published in The Lancet. And commenting that another publication/magazine/journal had apologised for something – I,m assuming similar inaccuracies.

The 2 actual tweets were :

1st )
” What exactly would we be apologising for?? For having a view? Ridiculous.
You,re bullies ! ”

2nd )
” Chronic Fatigue = polarised field ! We,re entitled to our view as anyone else. Its an editorial !!
Write a letter if you,re that aggrieved ! ”

Gosh.
I mean, where do you start  . . . . ?

I could write so much, but simply don,t have enough energy. So I will just need to make my comments in shortish bullet points.

1) This Lancet editor has less than 1000 followers on twitter – but The Lancet itself has 164,000 twitter followers.

2) People with ME/CFS have a very serious, debilitating condition. In some cases people who have Very Severe ME have to be tube-fed as they are too weak  even to swallow.
Even the most mildly affected often struggle with simple daily activities. That the rest of the world take for granted.

3) We are hardly in a position to be bullies, are we ?
I thought bullying was about having power and control. In this situation – who has this ?
I don,t think it is an ME sufferer or the ME community.

4) Another ME sufferer tweeted :

” Jaw dropping response to chronically ill #MEcfs patients. Many cannot write an email ”

And there were many many other upset, outraged comments too.
Not surprisingly.

5) The ” write a letter . . ” comment really upset me too.

I have a multitude of symptoms to struggle with most days – just like thousands of other sufferers. The “brain fog” symptom has been pretty severe over the last few years in particular. Making writing an email or a letter a very difficult, time consuming and energy-draining task for me a lot of the time. It is difficult physically and also mentally.
I know I have written on this blog over the last few years about how much I was struggling with this. How an email that should take maybe 20 mins would take me 4 hours. And I would pay for it by being wiped out sometimes all the rest of that day. And the next day too sometimes.
etc etc etc . . . .
(A letter can be even harder if you don,t have somebody to post if for you.)
This was the reason I had accumulated such a huge backlog of work, and my business was spiralling out of control.
ie. That I couldn,t even manage to do simple admin tasks most of the time.

And the repercussions of this for me have hit me very hard.
Voluntary Bankruptcy, and the loss of almost everything – now in my 50,s.

So I did feel enraged at a health editor from a powerful health publication making such comments.

Over and out for now.

The Real Face of CFS . . . . reblogged

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http://wp.me/p2E7tJ-8N

It’s 12th May and is ME Awareness Day and I haven’t managed to do a new blog post for the day. Although I did want to . . .

But I would still like to do something to join in the spirit of the day.  So I’m just going to publish the link to a previous post I did last year which was quite popular and got a lot of hits at the time,   ie  :

“The Real Face Of CFS”

NB. The bit where I said I thought I was getting slightly better – well that didn’t last long unfortunately.
Still struggling at the moment.

But seeing all the comments, links and blog posts that fellow sufferers have already posted to Twitter this morning is inspiring and uplifting.
And it reinforces that I am certainly not alone.

Apologies for taking a lazy option here,  especially when so many others have gone to a lot more effort.
Better than nothing though . . .

Too much thinking ?

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Have realised this week I need to be more careful with what I do.  And not to get so carried away with things. If I am enjoying something and find it interesting and worthwhile – I tend to kind of throw myself into it and lose all track of time. And this can (and often will) make my CFS symptoms worse. Except I don’t realise this while it is happening or building up – but only when it is too late. If that makes sense to anyone ?  That awful post-exertional fatigue – except that “fatigue” is a very lame description of how it feels. Plus very nasty headaches this week with eye strain and over-sensitivity to bright lights, noise etc. I got to the stage I couldn’t even tolerate watching TV or reading a book or paper.
Not ideal.

This week I have spent far too much time at my desk using my laptop – again.
I have to do this with my work stuff and that can’t usually be avoided.  But have also being spending too much time on twitter. And thinking up stuff my for blog. Actually that gives the impression I am struggling to find stuff to use – but its the opposite problem. My head is full of over 20 years worth of stuff I want to get out – the problem is deciding what to write about first. So I end up spending too much time thinking and mulling over several options and ideas at once. Then end up too tired or headachey to write anything at all !
Overthinking stuff is maybe something I have always been prone to doing. In fact when I was doing Mickel Therapy back in 2008-09 David Mickel once said to me that his biggest challenge (ie. read problem !) was to get me to stop thinking so much. You see Mickel Therapy although decribed as a “talking treatment” is NOT a phsycological treatment. It has nothing at all to do with positive thinking, changing your thought processes, analysing, cognitive behavioral therapy (CBT), etc etc. (Just decided I would add this as I know there will by many sceptics out there – which is a pity.)

Back to my point :
Although I really enjoy twitter as there is a whole world of interesting people on it, and subjects that interest me – I have to accept this involves too much time staring at my laptop screen. And I will keep doing this blog – but must try to get into a better routine with it. Just decide on an item and write about it. Don’t over-think it and don’t worry about trying to make my writing perfect either. It is just a blog after all – not a classic novel. Both these things involve me spending too much time thinking, and over-stimulating my brain. Twitter of course is fatal for this – so many people and so many subjects of interest on it. Interesting to me anyway. But although my head feels it is enjoying this – I have to accept that sometimes my body does not, ie, the bad CFS symptoms this week.

Not a very good post I know – more a note to myself.

Do any others with CFS or ME feel their symptoms get worse if spend too much time thinking ? Or over-stimulating the brain in some way ?

#ME Insults on Twitter

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ME Insults

In my post of 6th Oct I mentioned that the poor treatment of people with CFS or ME was a scandal. And I had mentioned the ME Insults timeline on Twitter. A bit more about this now.
Twitter is marvellous for connecting with people worldwide on endless topics of interest.
Recently someone posted (tweeted) a message suggesting that people share any insults they had received since having ME or CFS. This then quickly expanded to include any comments which were – ignorant, hurtful, nasty, silly or just plain stupid. It was suggested that any replies included #Meinsults in them – so they would be recorded in a separate timeline in Twitter.
And it just took off.
Hundreds of people posted messages – maybe even over a thousand in just a day or two. What started off as a way of sharing and venting frustrations about how folk had been treated became more serious as all the posts (tweets) came thru.  And were read.  Seeing so many examples in black and white of how many people had been treated poorly (by GPs and/or friends, family, relatives) was incredibly shocking. None of it will be news to many people who have had CFS or ME – especially if over a long period of time.  But seeing so many examples in writing somehow made it really hit home.
Some random examples from the #Meinsults timeline as follows :

“You have been unwell for far too long now. Its time my son found himself a new wife.”
(Has got to be one of the most cruel ones.)

“That shooter had something wrong with his head – and you have too.”
(Incredibly from a GP to his patient and referring to a gunman who had shot and killed several people in the city earlier that week.)

There is something wrong with your head.
(A variation of above but from a GP’s receptionist this time. Yes – the receptionist.)

“It doesn’t matter how bad it makes you feel – you must keep doing it.”
(My 1st GP’s view on keeping on exercising on top of working full-time while my health and symptoms got worse and worse.)

Do you not get bored in the house all day ?

We all get tired but we just have to push on.

Maybe you should try to be a bit more positive.

If you bring her back to school tomorrow then we will say no more about it.
(From a head-teacher to the mother of a severely affected pupil.)

I couldn’t be bothered with that.

I’m not the sort of person who would get that.

I don’t really believe in all that.

I don’t think he is really trying to get well.

You really shouldn’t keep him indoors so much – its not good for him.
(From a GP to the mother of a severely affected sufferer who had deteriorated to the extent he was almost bedridden.)

We don’t do home visits for fatigue here.
(A GP surgery refusing to visit a severely affected housebound sufferer.)

This is just a very brief selection.

Some thoughts :
Why is this still tolerated today ? And why do people feel it is ok to speak to sufferers like that ? And would these sort of comments would be made to people with cancer or multiple sclerosis ?

The CFS is not ME row

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Before I joined Twitter I didn’t realise that there was quite a row going on over CFS and ME.

Now that I’ve been on twitter for a while – I have seen so many tweets on this subject.
Eg :
Your CFS isn’t as bad as our ME
We have ME and its more serious than your CFS
If you had ME and got better – then it wasn’t really ME in the first place. And maybe “just” CFS.

Etc Etc etc . . .

And I just want to say here – I am sick to the back teeth of all this.

My diagnosis was CFS.

  • It was what the GP called it on the day – after the other stuff had been ruled out.
  • It took a struggle of more than 12 years to finally get a diagnosis at all.
  • I have a big list of symptoms to deal with – luckily not all at the same time.
    (I listed them in an earlier post today for info.)
  • Frankly I don’t care if it is called CFS or ME. All I know is – it has been a very big problem in my life, for a very long time.
  • I also know I am not anything near as bad as many out there – who have a more severe form of CFS or ME.
  • I have met people with CFS who have been much much worse than me.
  • And I have met people with ME who were less affected and having a fuller life.
  • Some people with CFS have had loads of tests – some just a few.
  • Some with ME have had extensive tests – but also, some just a few.

I don’t think there is any “black & white” with this.

I do understand the reasoning for many people and charities wanting the name CFS scrapped – and I agree it does nothing to convey the seriousness of the condition. As people just hear the word “fatigue” and mentally dismiss it as not very important.

But I do feel that we should all be on the same side.
Whether CFS or ME.
I mean they are both bloody awful at times.

Surely ?

Any thoughts/opinions/comments very welcome.

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