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Death of another ME sufferer

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I wanted to do this post about the very sad death of Jodi Bassett who was a long term sufferer with Severe ME. Probably Very Severe ME.

She died on 11th June 2016.
She was just 40.
She had suffered from Severe ME since she was 19.

She created an amazing and comprehensive website called The Hummingbirds Foundation For ME.
http://www.hfme.org.
To help others.

I think this was mainly done from her bed as she was so ill and disabled by her ME.
To quote from her website, its purpose was :

” Fighting for recognition of ME. And for patients to be awarded the same basic human rights as those with similar neurological diseases such as M.S. ”

I’ve only been able to read tiny bits of the site because of my own symptoms being bad a lot of the time.

Jodi explained on the website

” I’m 100% housebound and 99.5% bedbound.
Yet like so many other ME sufferers I have had to fight so hard just to try to get even basic help and understanding from doctors, friends and family members ” .

That sums it up really.
The almost impossible position that people with ME are in.
We have to fight so hard for anything.
But the exertion makes us even more ill.
Such a vicious circle.

I’ve given personal examples of this throughout my blog.

The news about Jodi’s death I read on twitter. Where I get most news.
There were many tweets about it on Twitter.

People were very saddened by the news.

In the meantime I wanted to help raise awareness. 

And express my sadness for Jodi and so many others who have died.

R.I.P Jodi

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Going Into Hospital

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Can hardly believe it’s already the 24th Jan 2014.
I haven’t managed to do many posts in the last while, I know.

Everything has been too difficult.
Same old story . . .

Incase anyone thinks I am being a drama queen – my husband was almost in
tears the other night. And was saying things like “this is a terrible life” . . ,
NB.  He won’t thank me for quoting this here – but I have to.
As very few people can have any idea of how much struggling with CFS/ME long term takes out of you, and your partner. (Where you’re lucky enough to still have one that is.)
When there has been so little help available.

This is just a very brief update :

On Monday 27th Jan I will be getting the benefit of a 5 day in-patient stay (treatment and rest) in the Homeopathic Dept of Gartnavel Hospital in Glasgow.
And while I could say :
At last – some much needed help after what feels like a 25 year struggle, etc etc etc . . .  I do realise I am very fortunate to be offered this at all.
There are many people with CFS/ME much worse than me.
And so many people are just left to rot. Which was what I felt had happened to me – until recently.

Looking forward to this has without doubt given me a big mental & emotional boost – because how could this week fail to help me ?
Even just a little bit will be a huge bonus.
They are a Centre Of Integrative Care after all – which sounds ideal for people with CFS/ME.

But the effort involved in sorting out various work things, putting some changes in place, etc – has had a bad  physical effect on my health this past 2 weeks.

I’m getting that heavy pressing weight in my chest again. Lots of other symptoms too – but the weight on the chest (and out of puff so easily) is a problem that isn’t easily ignored.

I haven’t even been able to give much thought to what I want (and need) to take into hospital with me yet. And right now I have so little energy left that I can see me arriving at the hospital with just my handbag and maybe a toothbrush in it.
And little else !

But this is meant to be a positive post – and I have no doubt this coming week will benefit me.  Even if I do arrive looking as if I’ve been pulled through a hedge backwards . . .
And I’m really grateful for this chance.

I don’t think there are many of these Integrated Care centres throughout the UK.
I am very lucky that this one exists right  here in Glasgow.

Roll on Monday . . .

Feeling Sorry For Myself Today !

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Ok I confess I was feeling a bit sorry for myself today. But its allowed at times isn’t it ?

Reasons :

1) Now Friday night and I haven’t been outside the house since last Sunday. (Actually that is just 5 days which is better than some weeks. But still not great.)

2) I am managing to work (for myself) but doing it poorly. Backlog of work just gets bigger and bigger !

3) My life for such a long time now has been :
Work – too much for me – unwell – rest – recover
– then start all over again.

4) I just cannot get a proper break to allow myself to get better – or work towards it. If I stop for 1 or 2 days (when CFS forces me to) the work backlog and problems get worse. And makes it even harder when I restart a day or two later. I don’t want to keep going on about this as I know I’ve mentioned it before – but it feels unresolvable just now.

5) Have so little energy or time left over to do anything nice or fun – apart from work, work, work.
Not the life I would have chosen.

5) I was guilty of dwelling today on how many days of my life have been “lost” because of this bloody CFS.
By lost – I don’t mean days I haven’t got out the house. These are very common because I work from home, then have no energy left. I mean the days (like today) when most of it has been spent being unable to do almost anything (even work). And have been in and out of bed most of the time. (Still in my PJs now.)

6) Often feel the outside world has no idea what my life is like.
For instance neighbours that I haven’t managed to chat with properly for ages probably think I’m a bit unsociable. Some friends I’m sure have taken offence that I haven’t been in contact for ages. Etc etc
And my husband tends to play it down if people ask. He will say things like “she gets a bit tired” or “she tries her best”. Neither of course give any inkling of the reality.
NB. This is a difficult area for me and always has been.
I don’t know if I can yet explain it properly. You see its not that I am looking for attention or sympathy. But I often feel that hardly anyone knows how hard I am trying – and how hard it is day to day. And I am so sensitive at anyone thinking I’m lazy or not trying.

7) Sometimes I feel scared I could slip into a “severe CFS” state and won’t be able to pull myself back. If things in my life don’t improve and the day to day stress lifts a bit. This can’t happen on its own I know – and I am trying so hard and so many things. But these take up even more energy.

8) I keep saying “I will get there” and “I will keep going” . But some days I don‘t believe myself.

9) I was also dwelling (too much) on the way so many people treat you if you have CFS or ME. Not everyone by any means – but so many people.
Hubby once said to me “Anne, people are bored, don’t understand and are not interested”.
A young girl (young teens) with ME put it very simply in an article I read recently. She said “people have not been very nice to me since I got ME”.
Both of these sum it up at times . . . .

CFS – how long ?

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In Jan 2008 I met a doctor in Elgin (David Mickel) who asked me how long I had been suffering from CFS.
I didn’t know the answer – it seemed like forever.
He then turned the question around to :
“when do you last remember feeling fully well” ?
And that was easy – the mid-1980s. Maybe the late 1980s at best.

Quite a long time ago then . . .

Its funny how it can be easier to remember a “feeling” rather than precise details. And when I thought back to how it felt when I was fully well – the time/place etc all came back to me easily without having to think about it.

But my story is not unusual.
Throughout the 1990s I sort of managed but quite badly at times. And it got harder and harder as the years went on. Especially at work.
Eventually diagnosed late 2002 or early 2003.

My CFS did, and still does, fluctuate quite a lot.
And I know that I am actually very lucky with this. As it does allow me to do things and have a life. Even if quite a small life at times.
And although it may feel “severe” to me sometimes – I think it would more likely be classed as mild to moderate CFS.

A Small World

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Right now I feel as though my world consists of 2 rooms upstairs in my home – ie. my bedroom and my office (which is in the next bedroom). And my day to day life is just : work – exhausted/CFS worse – then sleep.
Then more of the same.
But at least I do have the luxury of working from home and for myself. Which is just as well as some days I work very badly or slowly. And some days I don’t manage at all. But thats nothing unusual with CFS – it just wouldn’t be much good to an employer !
The biggest problem I have right now is when I try to have a decent break to allow my CFS to get a bit better – all the work problems escalate. (I always have a backlog as its hard to get on top of things.)  After a few days off I will feel rested and stronger – but then have to face problems that have resulted from me missing things that maybe had to be done by a certain time. And with it being property – almost everything has a financial penalty or cost of some sort. This then causes more work and problems . . .  and a lot of stress.
An awful lot of stress !
So I seem to be in a vicious circle which is hard to get out of.
But I have to keep going – no other option. I did choose to get into property because I have CFS. (Realise that will sound odd and will explain more in another post).
I never expected it to be easy or a short-term thing. But right now it is quite a struggle.
Its difficult to get any balance in my life – like doing nice things eg. actually seeing people, friends, actually getting out of the house. Even just watching TV or reading would be nice !
I seem to be cancelling things more – or just not making any arrangements in the first place, as I know there will be a high risk I will have to cancel if not well on the day.                                                                                                                       So its not easy at the moment – but I will get there.

NB. I’m not looking for sympathy here – I just want people who know me to understand. Because I don’t think very many people do ?

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