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I Wish . . . .

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I WISH FOR :

To be walking on a beach, feeling the warm sand under my bare feet
To feel the sunshine on my face
To be near to water, looking out at a huge ocean, all the greeny blue water
To see the calmness of the hills, their stability
To swim in the sea, or even just walk in it and feel the water around my legs
To sit outdoors and lean against a big solid tree, eating a sandwich, looking up at the sky

To sit on a balcony early evening, looking out at a view of water and hills. And faraway houses.
Maybe with a nice glass of chilled wine
To feel the warm evening air flowing thru my loose hair
To eat a seafood salad in an outdoors cafe, perhaps looking onto a quiet beach
To be able to read a good book and just lose myself in the story
To listen to calming beautiful music

To be very far away from all worries, all insecurities, all fears about the future.
Just for a while  . . . .
Not asking for a perfect life – but just for some things to get a little easier.

Bankruptcy for me has been absolutely no relief whatsoever. It has been brutal.

It has replaced some stresses with different stresses and worries which seem to be keeping me quite unwell. And I suspect the sheer trauma and impact of it all may have made some of my symptoms even worse,
eg, severe brain fog (aka cognitive dysfunction or brain dysfunction)
headaches, and hyper-sensitivity to things like noise, light, using laptop, mobile, watching TV, even listening to music

Hey Ho, nobody said life would be easy . . . .

I crave the company of people who are :

gentle
calm
kind
have empathy and compassion for others
understanding
non-judgemental
are willing to learn, to listen
have varied interests
have a good sense of humour
don,t have rigid black and white opinions
have had life experience which has given them an open mind

I need to avoid people who are :

ignorant and unwilling to learn
abrupt
sarcastic
(sarcasm when aimed unfairly at me is absolutely lethal for my ME, an instant trigger for all my symptoms escalating)
people who make fun of, or laugh at, others’ limitations, or problems
people who make jokes about things that are not at all funny
people who know what upsets me, and my weaknesses, and take pleasure in “pushing my buttons”
(it always works – and I get upset every single time)
have rigid, unbending opinions
who get bored easily – there is so much in life to experience (how can people get bored . . . ?)

But I guess we would all like these things . . . !

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Re-blogged : Hip Surgery and ME: Society Has It Wrong

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I had to reblog this post.
It is from Jeannette Burmeister’s blog which is called
http://www.thoughtsaboutme.com.
And it is written by her husband Ed Burmeister.
It is about one of the worst, most painful issues, encountered by people with ME.

Thoughts About M.E.

I am proud to share a note that my husband, Ed Burmeister, wrote last week. He initially posted it on Facebook only where it received a lot of attention and was shared more than 250 times. It really resonated with the community.

Therefore, I talked him into allowing me to post it here as well. I am blessed to have such a supportive and loving spouse.

Last Wednesday, I had a complete hip replacement.  It was a short procedure (1-1/2hours). No general anesthesia required.  I was out of bed the day of surgery and home after two days.  On Monday, I started driving again and really could have done so on Saturday already. Yesterday, I returned to work. I was comfortably working away, largely free of pain.  I walk without a limp and with no assistance and am pretty much unrestricted in my activities. I never needed narcotic painkillers after…

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Headaches and finding a new GP

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Friday morning.

The frustration of this condition knows no bounds, and I guess I just need to write about it today.

Last Sunday I got out with my husband during the day.
Our car is fixed now and it was so good to get out. I think it was the first time I have been out during the day (ie, in daylight) for maybe 8 weeks.  I suspected I’d be paying for it a bit the next day – especially after climbing all the stairs to get back into our top-floor flat once home.
But that would have been ok. Well not ok exactly, but I would have accepted it without feeling too stressed about it.

I’m writing this on Friday morning and have been pretty much bed bound for the last 4 days. Not so much with exhaustion and weakness (although that too). But with crippling headaches (again).
So frustrating after managing a few hours out on Sunday. That horrible reality of 1 step forward then 3 steps back.

It all got triggered by an argument on Monday evening with husband.
Won’t go into details, but it was an issue that’s been argued over many times.  For me, very upsetting. And it always feels unresolved.
Hey ho . . . but that’s married life isn’t it ?
But it made me think about how emotional exertion (from a bad event) can sometimes have an even worse  impact on this condition than doing too much physically. At times.
If that makes sense ?
Well it made  sense to me.
Being in bed for 4 days completely disabled by headaches and exhaustion is bad.

Oh god, these headaches are vicious.

Been using the usual stuff like Panadol Extra together with Ibuprofen – didn’t work. Eventually gave in and resorted to taking Solpadeine Max the last two days – which I really don’t like taking because of the addictive affect of the codeine in it. And you are only allowed to use it for a maximum of 3 days anyway. Also tried using cool gel migraine patches on my forehead.  Some things would take ages to work, or not do anything at all.

Lying in bed with so much pain was driving me mad, but I didn’t have the strength to get up and move around. Or do anything to distract myself from the pain.
All I could do most of the time was try to “go with the pain” and breathe. As slowly and deeply as I could. Over and over.
Most of the time this didn’t work.  And I have to confess I wasn’t thinking calm or relaxed thoughts . . .

I was dwelling on stuff like :

This is the UK with a proper health-service. Not some backwater country with no health service.

It’s ridiculous that I can’t get any help with some decent pain medication.
Its really not much to ask for.

I’ve been mentioning these headaches to GP for years and years.

And at least twice to docs at the Homeopathic Hospital.

But nobody listens to a word I say.

And the last GP who phoned me from the surgery I have been with for 28 years was awful and actually made things even worse.
(See last post. The 5th section – it was quite a long post.)

And it is so bloody hard to change docs. To physically do it I mean. With this condition.

This is a situation I’m really struggling with.  And have done for years.

So far, I have managed to get a registration form from another surgery. But my husband had to go in to collect for me. As they don’t post or email them out  regardless of your situation. The receptionist I spoke to didn’t seem to understand much about the limitations of ME/Cfs. And it will be impossible for me to actually speak to the GP until I am registered as a patient.
(I don’t mean I wanted to speak to him as in a proper appointment, I wouldn’t expect that. But just to speak for a few minutes to kind of see what his manner towards people with ME is like.)

The process, as I understand it, is :

1) You have an appointment/examination with the nurse and fill in the form (I’ll need to complete it in advance).
2) Then (IF they agree to accept you as a new patient) your medical records get transferred.
I was informed this can take 2 months. I have no idea why that long.
NB.  You might not be accepted if it is felt you have “too much” wrong with you. (I heard this unofficially, not from the GP receptionist I have to say.)
3) Once this has all happened you can actually speak to the GP – if he hasn’t retired by that time . . .
and then the crucial one
4) You you have to hope (and pray) that he has some knowledge of ME. And even more importantly – a decent attitude towards it.

So its a kind of catch 22.
You have to go thru this process first, before you find out if it was worth all the effort of doing it (ie, to get a decent GP).
You may be rejected anyway.
You may complete the process then find out the GP and the surgery are even worse than the old one.

The chances of getting a GP who is more “ME/CFS friendly” and informed is maybe 50 – 50. Even that may be optimistic.

After just one phone conversation with the receptionist, I was exhausted. Mentally and physically.
And frustrated that she couldn’t understand why this is a difficult process for folk with ME/Cfs.  And may be pointless for me, and a waste of their time also.
I tried and tried to explain why it was difficult. But the longer I tried the more exhausted I got. And of course, the brain fog always gets worse in these situations. And I probably just started to sound drunk and confused.

I really need to be a lot more well than I am just now, to be able to do this.

When I was more well in the past – that of course is when I should have put all my energy into doing it.
But I didn’t.

But I will really need to persevere with this now.
I have doubts about the surgery for a few reasons – parking issues, suspect it may be quite a noisy surgery, etc. When my husband collected the registration form he said it looked as though it was “full of Romanians and asylum seekers” . . .
All I could think of was – as long as they’re not noisy I don’t care.
But the GP has been mentioned to me.
And I simply don’t have the energy to phone around various places. It would just be the same process everywhere from what I understand.
(Did try one other surgery but it was outwith my post code.)

At one point this week, I was actually trawling the internet for websites that sell you painkillers that normally require a prescription. But without a prescription. They seemed to be mainly American sites. But I couldn’t go any further with that – mainly because I just couldn’t tolerate looking at the tablet’s screen for long enough. And couldn’t concentrate enough to be able to read or digest the information.
However that was maybe a good thing. As this would seem a rather dodgy thing to do – maybe even dangerous.
But the pain was bad.

Today however, it is much less.

And I’m writing again – even if it is a bit negative.
I will try and do some lighthearted posts, I promise.

CBT & GET – my experience

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CBT & GET – My Experience

To follow up on the recent post on CBT and GET – I thought I would share my experiences of this. I imagine people’s experiences will vary widely.
These 2 treatments are still the main recommended treatments today – here in the UK and also in the US (as I learned last week).
My understanding is that they have helped very few people with CFS or ME – and many have reported that GET actually made them worse.

CBT = Cognitive Behavioural Therapy
GET = Graded Exercise Therapy

CBT :
This is a talking psychological treatment with a therapist, counsellor, psychologist or psychiatrist.
In my case it was with a clinical psychologist in Glasgow in 2004. There was a long waiting list for this – I waited around 9 months.
Well we now know that this does not work for CFS or ME – as it is a psychological treatment aimed at curing a physical condition.
To be honest, my experience of it was reasonable all the same. Compared to many other stories I have heard.
The psychologist was very nice and easy to talk to. He put no pressure on me to feel I should be trying harder and seeking another full-time job. By 2003 my health had forced me to resign from 3 jobs. One after 20 years, next after 1 year, and final one (part-time) after 4 years. And I had left with nothing at all financially – even after 20 years in the main job. So I was feeling a bit of a failure without doubt at that time.
Being able to talk and being listened to and encouraged did help me a lot on an emotional level. (Especially after what felt like brutal treatment and lack of help from a previous GP over more than 12 years.)
However it was no help at all with my CFS. It did nothing to cure it – impossible as we now know. And nothing much to improve it either.

GET :
My experience of this was just silly and a total waste of time.
I was referred to an exercise therapist who was based in a sports centre in Glasgow south-side in March 2003.
The first thing I remember that seemed stupid was I had to fill out a questionnaire – but it was full of questions about your mood, etc. Whereas I had been expecting questions about everyday stuff I found hard – eg. Housework. Or physical activities. By the end of the questionnaire my mood had certainly gone downhill – it had made me feel a bit stressed. As the questions bore no relation to the problems I was having day to day.
Next (after a short chat with the therapist) I was set exercise targets for a month. A combination of outdoor walks and using a sky walker (or elliptical trainer) I had at home. I was to do these every day. And I had activity charts to record my progress – with space for ratings and any comments. The ratings ranged from 8 (very easy) to 15 (very hard & unable to speak).
For the 1st month my ratings were all 14-15. But with no comments. It got no easier – and by the end of the 6th month my ratings were all 15 and I had even added some 16s. Plus I had a lot of comments too by this stage, eg. Felt sick, felt dizzy, felt shaky, back sore after, etc. Basically it was making me worse – but I couldn’t see it at the time.
The therapist phoned me after the 1st month. I said Yes I was sticking to the targets but it was very hard and I wasn’t any better. She said something vague like “well never mind, just keep going . . .” And changed the arrangement so that I was to phone her after month 2 with my “progress”. I didn’t bother to phone her back as she didn’t seem very knowledgeable or helpful. And couldn’t answer any questions I had asked. (She was probably glad I didn’t phone back !)
But I did keep pushing on with it as has always been my way. Although very stupid in this case. Then eventually gave in and just stopped.
I do realise that I was very lucky that the GET didn’t push me into a severe relapse though – as has been the case with others. And I was also lucky that my therapist was fairly uninterested – as many others have been pushed on too far by over-zealous therapists.

My thoughts now :
GET should be abolished. And CBT only offered as a complimentary treatment.

Anti-Depressants

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Why Happy Pills ?

I have been on anti-depressants for over 8 yrs.
My doc was always keen to give me these since I was diagnosed with CFS in 2002/2003 – after struggling on at work for at least 12 years before that.
With CFS or ME come a big list of physical problems which can make day to day life quite difficult.
Add to that almost no NHS medical help (none that works anyway), no financial help, no practical support, no emotional support.
Plus often boredom, impatience, or disinterest from people in general.

No wonder people get depressed !

Or in my case – more stressed-out than depressed.
If I didn’t “take the tablets” I would be in danger of bursting into tears of frustration and anger at stuff on a regular basis.
Almost every aspect of my life has got harder over the years. Especially the last 2 or so years.
Right now I seem to spend most of my life working – then exhausted – then sleeping.
Then more of the same . . .
There is very little time, space or energy for much else.
Not by choice – but because I work for myself and it takes me ages to get thru stuff some days with the CFS.
If I rest – the work problems and backlog gets worse. And everything has a “financial penalty” of some sort – as I deal with property.
If I just push on and on while feeling ill – I then end up “crashing” physically and mentally. And may end up in bed for a day (or even a few days) to recover. And while recovering – the work backlog and problems all get worse.
Its a vicious circle.
And I have “lost” so many days out of my life this way over the years.

Add to this the problems of trying to do normal daily activities like food shopping, cooking/preparing some dinner, laundry, housework, household finances, personal things like having a shower, or ironing clothes to wear.
These things can be major challenges at times when the CFS is bad – and often just can’t get done. Partly because no time left, but more often because no physical energy left over to do them.
Apart from the most important one – ie. Eating !
Mind you, at times I have even had to resort to just eating some biscuits or a slice of cheese for my dinner before collapsing into bed.
Not ideal.
– Then add to that the problems of having no money to spend, being overdrawn (or close), credit card debts rising, etc. And that’s just the household finance.
– The property finance is maybe 10 times as complicated and the credit crunch/recession of the last 5 years makes this all the more difficult. But I am still managing to keep it all afloat – though it feels like it is taking everything I have got at times.

But no choice here really.
As I can’t just “make it all go away”. And in this market and financial climate it isn’t possible just to sell it all off quickly – even if I wanted to.
I always look at the long picture – and keep telling myself it will be worth it in the long run.
And that I will get there.

My GP’s view on CFS and ME was that you will not get any financial help from the state – as you have to be “virtually in a coma” to qualify. So he would not help me at all. And this was years ago – around 2003.
NB. Can you imagine how angry I feel when I watch Benefit Cheats on TV . . . . Not that I would want to rely on benefits but it would have been nice just to have a little bit of financial help at times! Just to ease the strain.
I mean other people get benefits who don’t always need them, eg. Child Benefit. But thats another issue.

This is why I got into property.
My choices were very limited. And I had to do something, and something that would (ideally) produce some money in the long run.
CFS makes me unemployable – as I can only work when I can work. And I do work most days. But I can spend 8 hours at my desk and PC – but some days only get the equivalent of maybe 1 hours work done.

But I recognise I am lucky that it does fluctuate and I do have good spells too – and actually have a life. Maybe just not every day.

This has been a long post – and maybe sounds a bit “moany”. (sorry !)
But my goodness – it feels really good to get all this off my chest.

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