Your Day (apart from gardening) - what took place?

Had to get the landlord in today, the water pressure
has been low the past 2 days, and it meant that the tank was not refilling, and so the taps had hardly
any cold water coming out.

Back has been really been painful today, higher up
the spine, just about waist high. So now sat with my heat pad on. Tablets taking a while to kick in.

 

I got a shopping order today from Morrisons and everything I ordered actually ARRIVED!

 

Sorry you are having a difficult day liliana. Hope that the tank situation gets sorted. Access to water is quite crucial so, hopefully, your landlord is being reasonable about this.


Holding the stomach in helps a little with back pain (until the tablets kick in). ♥

 

@Dips, I think most people are already aware of ME, the bigger problem is that rightly or wrongly a great deal of people still believe this illness to be psychosomatic.

 

My landlord is very nice, nothing is too much trouble. As he only lives next door, it's very convenient.

 

Yes that is a huge problem and the misconception that is is also a mental health illness. Both those issues are within doctors and the health care industry as well which is always worrying.

Unfortunately there are also loads of people who have never heard of ME i certainly hadnt until i was diagnosed with it. Last time i was in hospital lots of the nurses didnt know what it was either. most people i meet have never heard of it so i always have to explain what it is. I personally actually prefer when people know nothing about it because then they havnt heard any false claims and dont have any miss conceptions.

My mum met a women a month ago whose daughter who is in her 30s who has just learnt to ride a bike and she said oh my daughter has had ME since she was 11. My mum just went ok thats such a shame how is she managing with the bike. Aparently the women look so confused that my mum didnt ask whats ME or had any preconceptions that my mum quickly added oh my daughter has ME too lol

Honestly unless someone has a friend or family member or has come across someone who has it its very very rare that the person would have even heard of it. You also have the problem of saying oh i have ME and they go oh thats so sad you have MS. Lol

 

Dips - I only recently realised that CFS (chronic fatigue syndrome) is the same thing as ME. (Also has 2 other less well known names). So, the name of this condition is as confusing as are the possible causes it would seem. Also I read that there are no current cures or treatment for it! I wonder how long ago this condition has been diagnosed; presumably people had this before that time and didn't know what it was.

 

Oh yeh totally its like a whole level of confusion.

Its called ME by the world
Health organisation and is listed as a neurological illness. Myalgic encephalomyelitis means muscle pain and inflammation of the brain and spinal chord. The reason chronic fatigue syndrome exists as a name is because there was little evidence of this inflammation so medical professionals felt the name wasn't appropriate. There now is evidence of inflammation from brain scans and from the autopsy of sophia mirza who was one of the first people to have ME written as their cause of death. But the ME association thinks myalgic encephopathy (spl) is more appropriate due to the type of inflammation or something.

Then it gets extra confusing because chronic fatigue syndrome gets confused with chronic fatigue. Chronic fatigue is a symptom of many illnesses but can be an illness on its own which can be cured with lifestyle, diet and sleep hygiene changes.

Then there is 4 different diagnostic criteria for ME/CFS two of which don't include the defining symptom of post exertional malaise (PEM) and mainly focus on fatigue. These two criteria leave people with depression and other illnesses to be miss diagnosed. This is the issue with the research showing CBT cures ME as they used the oxford criteria which doesn't include PEM. You cant have ME without PEM.

The newest name is systemic exertion intolerance disease (SEID) This new name was decided this year by a panel in america to change it from
CFS so that the focus was less on fatigue and more on the defining symptom of PEM. Its not gone down well in the community to be honest.

Then there is Post viral fatigue syndrome which is what i was diagnosed with within 3 weeks after mild tonsillitis. PVFS can last up to 6 months and go away as bodies do need time to recover from viruses which is why you need to have symptoms and persistent fatigue for more than 6 months to be diagnosed with ME.

There are also outbreaks of it such as the royal free hospital disease. Etc

This all makes it such a big mess of confusion

Most cases start with a viral infection or injection (basically the same thing to your immune system) and people just don't get better.

Treatment wise on the NHS Cognitive behavioural therapy is given which can help you cope with being sick but wont treat the ME or graded exercise therapy which has been shown to be harmful and makes people sicker. Pacing is what is advised by ME charities.

But there is hope the Rituximab trial in holland is showing 60% of patients have significant improvement and for months. Rituximab is a drug used to treat some cancers and rheumatoid arthritis. Its depletes your B cells and its looking the most promising future treatment and invest in ME are the preliminary phases of a UK trial. Also this shows that ME is not just neurological its also autoimmune so is a neuroimmune illness

There is also research going on into gut bacteria and leaky gut in ME patients as well

And all of that is the most basic round up of everything which is why i dont blame people for not getting it. Its a mess to know as a sufferer lol

 

Received my "Approaching State Pension " application form - *sigh*
The rock and roll years are officially over !

 

The word "approaching" here (and age) made me think of a Groucho Marx joke.

A woman, of a certain age, boasts suspiciously about her youthfulness. Groucho asks her how old she is!

She pauses, primps her hair and offers "approaching 30".

Groucho quickly quips "oh yeah?....from which direction?"

 

I say I look in my late thirties ..... from a distance . Now its up to you to decide the distance ( and no its not light years ! )

 

Just finished a 13 hour shift... which should have been a 9 hour shift.... and under my arm, planning and reports to complete tonight... Ah well ... off now for 3 days so plenty of time in the garden to chill out

 

I am a semi recluse, by choice, i.e. only leave my flat to go outside about 3 times a week (mostly visiting my mum in her care home and to do a food shop). I seem to need a lot more space and solitude than most, although I have good social skills. (Just selective about how I spend my time).

Normally I try out a recipe, do some gardening and catch up on odd jobs etc. Well rain meant no gardening today (although, when it stops, it is often a good time to look for slugs and snails around plants). I frequent a spiritual chat room quite a bit and have got to know many there (even meeting up with someone, who lives in my area). We have laughs and are generally supportive towards each other.

Just a relaxing day which I so love.

 

my mates still staying with me so we have been playing computer games now watching a movie. Mainly lots of chilling. We have been having lots of discussions about the world as well. It all got very deep.

He did the Chilli ME challenge today and i thought he was going to be sick half way through but he soldiered it out lol

 

Started some physiotherapy today with a neurological physiotherapist who comes to your house. Hoping to strengthen my muscles and increase flexibility and get rid of the tightness

Was quite surprised when she said i had good movement and the muscles dont feel tight at all.

Had to answer loads of questions on background before sickness and my sickness so feeling very very tired now.

Got exercises to do this week and seeing her again next week :-)