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What the world doesn’t see . . .

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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 . . . .

My Life so far – NOT what I expected

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I save a lot of pics like this if I see them on twitter or somewhere – just because I like them.  Mainly funny, upbeat,  philosophical, inspiring,  motivating etc.
Something a friend said to me in a text message recently reminded me of this picture.
It certainly describes my life.

But I’m not OK with it – yet. That will take a while.

I’m 55 – and now have nothing.

The post from 7 Feb 2015 titled Battered, Bruised and Bankrupt explains.

When I say nothing – I mean nothing financially. And no security.

No money
No income
No savings
No ability to earn any income because of all the ME symptoms severely affecting my life. (Certainly not just now.)
No Benefits – I am not well enough to deal with the process. Nowhere near well enough.
No GP ( or as good as no GP).
I do own 50% of this flat I now live in with my husband – but at the moment this is 50% of nothing (financially). As it has a large mortgage on it and there is no equity in it.
And we now have nothing to pay off the interest-only mortgage with in 8 years time. We did have various mortgage Endowments – but they were taken from us by the Trustee In Bankruptcy and cashed in.

Worked hard since 17

With Commercial Union Assurance (now part of Aviva) for 19 years.
Then Prudential for almost a year.
Then NTL ( now Virgin Media) in telecoms for 4 years

Studied for professional qualifications in Insurance (Life and Pensions) and Financial Services (for Compliance work).
Obtained A.C.I.I ( ie. Associateship Of The Chartered Insurance Institute) in the Life & Pensions branch early 1980s .
Obtained MLIA {Dip) and FPC (Financial Planning Certificate} in early 1990s.
During the early 1980s I also worked in pub jobs for 3 (sometimes 4) nights a week – on top of my full time job. I did this over a period of a few years and think I worked in 5 different pubs.
The reason – to save up for my 1st flat. For the deposit, costs and fees, furniture, etc.
I was keen to do this but not have any debt when I moved in.

All these jobs/careers I had to give up and resign from due to my health. And all the symptoms of what I now know to be ME (or CFS as it was called at my diagnosis).
NB. I left all these jobs with nothing – even after 19 years in Commercial Union.
There was no help or support from my GP at all. And I just wasn’t well enough to be able to push for more help.

Finally got diagnosed with what was called CFS in 2003.
After more than 12 years of going back and forwards to GP – but feeling I was being treated like a time-waster each time. As if I was just being lazy.
Appalling treatment really.

By 2004 I had to accept I just couldn’t risk working for an employer again. Assuming anyone would have me . . .
Although I was feeling a bit better again after some rest time, I still had a lot of symptoms to cope with. I knew I could only work when I was able to. And would often need big rest and recovery periods.
No employer could be expected to cope with this.

So the only option left was to work for myself.

In 2004 I started up the Property stuff seriously.
Buying the 2nd flat to rent out (ironically the one we now live in and are very glad to have !).
By using savings and remortgaging our home I got started.
Then managed to build up to owning 15 flats by 2014.
Mainly by remortgaging them or using additional borrowing to raise funds for the deposit, fees and costs to buy the next flat. When the value of the property had increased enough to allow this.

The point of this was to get to a point where I would have been able to sell off a property every year. Or maybe every 2nd year.
And the profit would give me an annual income.
(It is very hard to make any real monthly income from the rent – there are so many expenses and things to deduct from it.)

Ironically, if I had done nothing at all we would now be much better off financially.

Hindsight again . . . . A totally useless thing.

Remortgaging our home was a calculated risk. But it was the obvious and only option to use. Neither of us have ever had any inheritances or lottery wins !
It had loads of equity in it at 2014.
Partly because of the increase in the property market. But also because we had bought it in 1998 with a very small mortgage. We put down a large deposit of 65% of the purchase price.
This was done partly by saving up very hard for a few years and going without most things. Really scrimping on everything.
And the reason for this – our future security . . . .

Now at July 2015 – Bankrupt.

Husband dragged down with me – as some properties were bought in joint names.
But he has been totally supportive and never blaming me. And I’m so grateful for this.
So, the loss of everything – apart from the flat we are living in.
Oh, and we were allowed to keep our beloved BMW. Because it is so ancient now ! (Think I mentioned this in a previous post.)

As I explained in previous post, the Bankruptcy was voluntary because of my health.
I couldn’t go on.
And this was the only way, as I understood it, to give away all control and responsibility for all the properties. And hand over all dealings with everyone to a Trustee In Bankruptcy. ie. All dealings with banks, letting agents, tenants, insurance companies, etc etc.

It hasn’t worked out quite like that . . . .

But that’s life isn’t it ?
You get told something but the reality turns out to be quite different.

But at some point all this horrible Bankruptcy stuff will come to an end. And I will be able to “relax” and have some peace of mind.
No idea when this will be – impossible to get any clear info in writing.
And I will have the energy (well, more than just now) to hopefully find a decent “ME friendly” GP.
Not really for treatment – not expecting miracles. But just for some symptom control and support.

At the moment I have none of this. Just nothing at all.

But I’m still here.
And there are many people out there with ME or CFS who are much much worse than me.

So I’m grateful that I’m not even worse than I am. And that I do have “mini bursts” of energy. And can do some things. Even if the recovery time after it takes days . . . !

PS.
Apologies for any typing errors. I tried my best to check it before hitting the publish button.
But I really struggle to use my laptop or tablet etc. And am all out of energy now.

Jamison Writes

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