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Crashing badly now . . . and scared 

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

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

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

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

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

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

But I can’t do anymore just now. 

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

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

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

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

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

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

Just breathe . . . . 

I can’t take much more . . . 

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I need the help of a good solicitor in Glasgow

HAVE REMOVED THE BULK OF THIS BLOG POST.   FOR LEGAL REASONS. 

I only have enough energy just now to copy below an email I sent to my usual solicitor last week. As it gives some background.
But he told me his firm don’t do civil court cases therefore cannot help.

HAVE REMOVED ALL OF THE DETAIL FROM THIS PART TOO.

” I am simply not well enough to phone around. Therefore adding this to my blog. And will advertise/appeal on Twitter.
Maybe not ideal but its all I can think of.

HAVE REMOVED STUFF HERE TOO.

It makes phone calls too hard. I can’t remember stuff, communicate what I need to say, get muddled, etc.
This email is massively hard work and exhausting. But I can take hours over it with breaks. Change mistakes, etc.

And another worry is any time limits for things. This is also why I feel I need proper representation.
Because with ME – when I push myself to use extra energy on something big (like typing this email) – I am then much worse for the next few days. Often completely wiped out with severe headaches and exhaustion.

So I’m concerned that I won’t be able to do things quickly enough, eg. any forms needed.

Sorry this is so long.
Will wait to hear from you.

Hope you are well and business is good.

Best regards

Anne Dean ”

Blog post amended 26/4/2017.

Apologies if it doesn’t make much sense now. My priority was just to delete any specific detail about the legal issue. Even although no actual names were mentioned, I felt it was sensible to do this. 

 

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 probably now 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 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.  All bad memories. 

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 nuch 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.

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.

 

 

 

 

 

 

 

 

 

 

 

Difficulties keeping in touch and feeling isolated

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

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

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

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

And another whole day was wiped out because of it.

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

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

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

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

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

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

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

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

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

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

Final note :

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

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

Apologies for the F word.

What the world doesn’t see . . .

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image

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

It certainly is for mine.

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

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

Some examples from my day to day life :

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

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

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

Having to buy clothes that will not need ironing.

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

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

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

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

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

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

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

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

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

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

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

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

and

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

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

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

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