Your Jaw Never Gets Tired

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 with my ME symptoms) 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 for me.
  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 then I was so ill after this – just from doing an email.

• 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. (I do realise that Panadols are mainly Paracetamol. But Paracetamol Extra doesn’t work for me. I think there must be some small extra things in the Panadols which help it work for me.)
  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. (Depending on how severe your ME is of course.) 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 2^nd 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 3^rd 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 very 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.

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.

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 abroad. When we eventually arrived there was a bad atmosphere and clearly everyone was upset with us. One person actually went as far as to say “you shouldn’t have bothered coming at all”.
How nasty . . .
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 maybe didn’t fully understand how much it can limit me. How disabling it is. So I tried to explain myself, how it was my fault but really couldn’t be helped, etc.
But I was pretty much silenced, talked over, etc.
Eventually I just gave up trying to speak – as 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 quite 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 one bit.
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 make some allowances.
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 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.