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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.

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Gratitude 6 : Red Roses

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image

A short post – as recovering from a rather bad week.
But I’m not going to write about that.

Instead, here is a photo of some lovely flowers from my neighbour. This was so thoughtful.
Aren’t they beautiful ?
Such a deep vivid shade of red.

How nice it was to water them this morning and take delight in how they have bloomed.
Isn’t nature amazing . . . . ?

Reasons For Blog

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

Because :

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

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

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

Other reasons :

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

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

Things People Say (positive thinking & housework)

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” She keeps her house immaculate – but then she has such a positive attitude “

This one also merits a post of its own.

A friend visiting me at home told me about a friend (of hers) who was sadly very ill with cancer.

My friend has know me for over 30 years – therefore has known me before CFS and all the time I have had it. And she knows that I regularly struggle with doing some physical things.
Like housework and cleaning for instance.
Which can often defeat me (and cause me to stress over it). Or I actually manage to do some – but often pay the price afterwards with a bad relapse or “crash” and may need a day or so in bed to recover. Or at best a long rest – and waste half a day while energy is restored.

When my energy is very limited I often have to choose between essentials. Therefore things like managing to have food in the house, and make meals just has to take a higher priority. Or laundry. Or even personal cleaning/hygiene.
I mean what is the point of a clean house if I am a mess myself, with no clean clothes to wear ? And hair an unwashed straggly mess.
And food – well it’s an essential for life. We cannot do without it.
Also my work – which can quickly spiral out of control when I fail to keep on top of it. And is a constant challenge for me.

But a dust-free room, clean kitchen floor, hoovered carpets etc – just cannot be as high up the priority list when you have to choose. Everybody would agree with that – surely ?

All these things my friend knows – as I have explained over and over throughout the years.
So although I tried not to – I couldn’t help but feel upset at her comment. As it kind of implied that if only I was to change my attitude in some way then I too could have a lovely clean house !

With regard to her friend who was managing to maintain a spotless house despite her awful health predicament – I had to admit I was curious.
I was imaging some sort of mind over matter positive thinking. You know the sort of thing you read about where a person somehow manages to summon up a huge amount of mental energy and can make themselves do amazing things.  Like walk over red-hot coals in bare feet.

Finally I just had to blurt out “but how does she do it ?”
The answer was not what I expected.
It was : She pays her sister to clean her house for her.

Now there is absolutely nothing at all wrong with this as it was obviously an arrangement that suited both of them.  And if I had the money to spare then I would have a cleaner too for sure. But the way that my friend was quoting it to me as an example of “positive thinking” . . .

I think maybe because of the look on my face my friend went on to explain further that the sister  “hadn’t done very well for herself in life” and that her ill friend was actually helping her out by letting her clean her house and paying her for it.

For once I was left speechless . . . .

Footnote :

I decided to add this incase I have caused any offence or distress to any cancer sufferers out there with this post ? As this was totally not my intention.  The employment of a cleaner is something to be recommended 100% if you have the spare funds to pay for it.  The point of my post was the comment made by my friend – and wasn’t meant to sound critical of the person with the cancer in any way at all.

Things People Say (just don’t do it)

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” If you‘re too tired you just don’t do it – it doesn’t sound like rocket science “

This was a rather impatient comment from a friend.
I was trying to explain to her how difficult it can be to do or complete things with CFS. Not because I wanted to bore her or to get sympathy. I just wanted her to understand why I can’t always manage to do things at times, or need to stop for rests. And crucially why I have often had to cancel arrangements with her after doing too much the day before.

But she couldn’t get this – and I was trying to explain how it is often impossible to tell in advance with CFS what is “too much” until after. Sometimes hours later or more often the next day. Either way too late. And how CFS fluctuates so much therefore can make it very hard (if not impossible) to tell what is going to be “too much” on any particular day.

But I got the impression she was bored and impatient. Hence this comment.
Re the “you just don’t do it . . . “ – gosh, where do I start !

I mean how do you “just not do it” when :

a) In middle of trying to cook dinner : do you just leave it to burn and go to lie down ? Or remove from heat and abandon it half-cooked to just throw out later ? Or are you more likely to push yourself on to try to finish it ? (So you have something to eat !)

b) Driving on a busy road or even motorway – you can’t normally just stop when you feel yourself getting weak . Usually have to keep going on for a bit at least. I mean you want to try to get home.

c) In middle of having a shower : do you just turn off the water and get out to rest maybe half-washed with shampoo still in hair ? Or do you keep under the running water but just stand and rest arms etc for a while ? In which case the water will probably run cold (as not an electric shower).

d) In the middle of a long difficult phone call perhaps with an Indian call-centre : do you just terminate the call mid-conversation and hang up ? Knowing that you will still have to make that call and start all over again. Or do you push on to attempt to complete the issue you have called about ?

e) When an online grocery shopping is delivered : if too tired/weak to put it away – do you just leave it all out in the kitchen ? In which case the frozen stuff will defrost and the fresh stuff may go off if its a hot day. Or do you try to push on to get it all packed away even though energy is poor ?

These are just a tiny amount of examples of day to day difficulties. I can only do my best – but do often end up with that energy “crash” a few hours later or next day. It just isn’t easy – even after all the years I have had CFS.
I just sometimes wish that people would be a bit more patient and try to understand.

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