Distinct Changes found in ME. Does it actually mean anything?

Today's news in the ME world is Distinct Changes found in ME.  Just another story in the long debate of is it Physical or is it all in the mind.  If the claims are true they are talking about changes found in first 3 years of illness so how does this help those of us who have been ill for nearly 20 years?  " those who had the disease for longer than three years did not show the same pattern." Also "It appears that ME/CFS patients are flush with cytokines until around the three-year mark, at which point the immune system shows evidence of exhaustion and cytokine levels drop."  I assume that long term sufferers cannot be tested or treated in the same way.  It is of course good news for anyone newly diagnosed or suspected of having ME, not sure why we say diagnosed as we keep being told there is no way of diagnosing ME.  

I do get rather fed up of these so called break throughs and yes we know what it is now, there seems to be a different theory every week, but then nothing else seems to be said about it.  Even if this is THE ONE then any treatment or even formalised testing is a long way off, as the study was quite small and needs to be replicated and proved.

In the words of Dr Charles Shepherd, medical adviser to the ME Association 

"If distinctive patterns of cytokine abnormality can be linked to both stage and severity of disease, this is a finding which could be used to aid diagnosis and open the door to the use of anti-inflammatory drug treatments that would dampen down the abnormal immune system response."

But he indicated that this was still some way off.

He added: "Although some doctors do still mistakenly believe that ME/CFS is a psychological illness, there is now very robust evidence being produced to show that we are dealing with a physical disease process that includes significant abnormalities involving the brain, muscle and the immune system." 

I have had tests that showed abnormalities and tests that were normal, but nothing is ever taken any further just called insignificant. I have lost nearly 20 years of my life to this stupid illness, it has prevented me being the mum, wife, daughter etc that I should be. It has a huge impact on my family as well as me,

Any diagnostic testing is not going to give me back the almost 20 years of my life I have lost to the illness.  Even if there was a test and treatment today how would I get back to normal, no one would give me a job, I can't get back Emily's younger years and be a better Mum to her.  We would not be any better off as I would lose my help, small amount of money I get and my car, but would have no way of earning and providing for my family.  It would be great to be free to do whatever I wanted, but money would still prevent us from things like travelling or having more of a social life.  I have always wanted another child, but I am too old for that now so I wouldn't have that chance either and I am sure things like adoption would still be out of the question for someone who has been ill and not done anything for 20 years.  It won't get me back all the hours I have to rest or am not able to play with my daughter or that I have been dependant on my husband just to get out of the house.

I actually feel very annoyed by the story and although it is progress it feels like another false hope.  If testing became available I am sure people who have been ill for a longer time will be at the back of the queue.  I have not been tested for anything for years, once you have a diagnosis of ME you are in the rubbish heap ands they say its pointless testing for other things. Then of course they say there is no way of diagnosing ME. I hope things do progress for those who can benefit as I would not wish this rubbish on anyone.

I know this sounds very negative and I wish I could feel happier, but it just feels like another insult and nothing will take away the years of disbelief in the illness and the stigma attached to it.  

No amount of stories will change the effect that ME has and what we have to live with each day and how our lives are totally changed.

I saw this image on facebook today and thought it really well summed up the symptoms and daily struggle.

I realise that what I have said may sound ungrateful and like I don't want to recover, that is not true, I just get so fed up of stories that make out ME will be cured next week and we will all live happily ever after.  If there was a cure and we did get better, yes it would be great, but we would still live with a lot of issues and life can never be normal.

A few creations.......

I feel like I haven't been doing much with it being school holidays and having Emily off sick, being ill myself and helping my Mum who has broken her ankle, but here is a round up of the latest things I have managed to make.

I was hoping to update the gallery page but can't work out how to add pictures, I thought it was simple, but of course it is not.

Birthday card made for my husband using pattern a421 from Ann's Paper Art.  There were 2 different ways to stitch the pattern, I was half way through before I realised I had done something different again!!

Valentine's card made for my husband using pattern a323 from Ann's Paper Art

Birthday card for a friend, using butterfly embossing plate from Craft Concepts

A coaster made using a pattern from I Can Quilt

I also made a card for a friends with an origami cat, but have lost the picture, but it worked very well so I am sure I will be making another.  Lots more birthdays and events coming up.

Emily has been creating too

She found a bird shape in the drawer and cut off its beak and used a peg, quite inspired I thought.  It was meant to be for Mother's Day, but then she discovered it didn't fit in the envelope so gave it to me!

Other creations that we have had the pleasure of are these cakes from Cakes for Breaks, thank you Catherine they were great, sadly I don't get to taste them as not gluten free, but always get good feedback from the eaters!

 A Rob and Emily share cake for a family meal to celebrate their birthdays

 Frozen cupcakes for Emily's birthday tea

Birthday cake for Emily's bowling party

Finally I have just had a beautiful delivery of flowers from my Mum made up by Flower Power a local florist.  Complete with vase so no messing about.

Pingoat

What is in a Name?

Well the latest in the ME/CFS world is what to call it again?

But how important is a name?  My name is Jane, does that tell you what I am like, how I behave, what I look like?  My name means gracious, gift from god, I guess that would depend who you ask as to whether they think that is true.

Does the name of an illness have to describe what it is?  Cancer doesn't tell you what it is, or Diabetes.  Many illnesses are named after people Parkinson's or Huntington's.  Has anyone ever heard of Guillain Barre Syndrome or Diabetes Insipidus?  Not many, but they don't think less of it because they don't understand the name.

When people hear the word cancer their immediate reaction is that it is fatal, actually y not many people die from it these days, but I am sure that changing the name won't make any difference and the emphasis is on getting quick and effective treatments.

ME/CFS was first called Myalgic Encephalomyelitis, but got changed to Chronic Fatigue as no one knew what Myalgic Encephalomyelitis meant.  Some believe that ME and CFS are different illnesses as there is much more to ME that chronic fatigue.

Literally Myalgic Encephalomyelitis means

Myalgia - Muscle pain
Encephalomyelitis - Inflammation of the brain and or spinal cord.

But does that matter?  What is important is that it is a serious and debilitating condition that is not taken seriously.  The time that is wasted thinking of a suitable name takes away from developing diagnosis techniques and research into causes and treatments.  Whatever it is called it will never lose the stigma attached to being Chronic Fatigue or Yuppie Flu, it might get more respect if it was called We Don't Have A Clue Syndrome!

The proposed new name is SEID, Systemic Exertion Intolerance Disease, hmmmm what does that say, sounds like idleitis to me.  Someone did an internet search for SEID and the first thing that came up was 

Really helpful!  If he wants to come and do my chores though I will happily call it SEID!

Whatever the name is will never describe how the illness affects us and the symptoms we suffer.

How do you condense this into a name?

Headache

Dizziness

Poor co-ordination

Poor concentration

Confusion

Unable to walk far

Unable to stand very long

Tinnitus

Muscle pain

Joint pain

Stomach ache

Irritable bowel

Tender spots in back and shoulders

Weakness in arms and legs

Fatigue

Feeling cold

Sweating

Irritable bladder

Palpitations

Tingling in hands, feet, head and face

Sleep disturbance, Insomnia

Nausea

Bruise easily

Sore throat

Swollen lymph nodes

Food intolerances, gluten, fish, alcohol, sugar, dairy, yeast

Itchy skin

Itchy eyes

Mood swings

Nasal irritation

Restless

Earache

Intolerance to bright light

Intolerance to loud noise

Weight loss

Panic/ anxiety attacks

Visual disturbance

Painful tongue

Shaking

Stiffness in arms and legs

Mouth Ulcers

Adrenaline issues.

They are my symptoms, they vary day to day and some are more of an issue than others.  Not everyone has the same symptoms or the same severity.  It is unlikely that everyone classed as having ME, CFS, SEID all have the same thing.  How can someone who can go to work, walk and run a home have the same as me or someone who is totally confined to bed and needs all care?  It's so confusing, but changing the name won't help.

What is in a name? ME, CFS, SEID? I don't really care what it is called, it already has a stigma and will never lose that, more needs to be put into proper diagnostics and treatment instead of what to call it, why does the name need to say what it is, other illnesses don't and they are taken seriously.

Where did 8 years go?

Today is Emily's 8th birthday.  I have no idea where those 8 years have gone.  It's been a hard slog a lot of the time, ME and parenting do not go well together, but we get by and are hopefully not making to bad a job of it!

Emily just born

A few hours old

This is what happened to me 8 years ago today

Our baby was due on February 20^th, so when I started with pains in the early hours of February 5^th I thought little of them, took some paracetamol and tried to go back to sleep.  Around 3am I had a show and was in quite a lot of pain, Rob got up and made us a drink and then we laid in bed talking for a while before drifting back to sleep. 

When it was time for Rob to go to work we decided it was fine for him to go as nothing was going to happen despite the pains.  He got to work around 9.30 and by 10am I was on the phone asking him to come back home as I was bleeding.  He rang a little while later to say he was just leaving and at the same moment my waters broke!!

I rang the delivery suite where I was due to give birth to say my waters had broken and to ask them what I should do.  They informed they were full and not taking any admissions so I should ring the other hospital and get them to see me.  I did this and they said they would ring me back to tell me when to go in.  They rang back a couple of hours later to say the original unit was now taking admissions again and to go to them.  The pains were getting worse during this time, but I still did not think I was going to have the baby!  It was bad timing as my grandma was being discharged from hospital that day after 12 weeks and my mum one of my birth partners was supposed to be there for her and seeing the social workers etc when she got home.  Rob kept ringing her to update her, but telling her there was no need to come up.

I got to the hospital about 2 o’clock; my contractions were 12 mins apart at this stage and very strong.  After monitoring me for about and hour and half they decided I was not in established labour and told me to go home and have a bath and gave me an appointment to return on Wednesday morning to be induced as they could not let me go longer than this with my waters having broken.

On arriving home the contractions were about 5 mins apart, so I decided to try a bath, this did not really help and I decided to get out, as I got out I was violently sick and doubled up in pain.  Rob thought we had better have something to eat so went to prepare something, but I was in so much pain I could not even sit down, so was on hands and knees in on the living room floor and still being sick!!  Rob gave up on food and bundled me into the car to go back to the hospital.  The contractions were now constant and I could not sit so was propped up on hands and knees in the back of the car, still being sick!!

On the way out Rob managed to grab a box of food, ring my mum and drop a key off with the neighbour to feed Timmy!  I have never known him be so organised, normally he is lucky to remember anything, still forgot the camera though as we always do when we need it.

When we got to the hospital I still could not sit, so was on my knees in my wheelchair, it was less than two hours since we had left the hospital.  This time I was taken straight into a delivery room.  They wanted to attach a monitor to me to check out the baby, but I was in so much pain I kept pushing them away and telling them not to touch me.  Eventually they got the monitor attached, but I could not stand lying on my back the pain was easier to bear if I was on my knees and I was still being sick too.  They asked if I wanted some pain relief, stupid question!!  But then they noticed the babies heart rate was dropping with the contractions and not recovering as fast as it should so they could not give me morphine, all they could offer me was an epidural, but they did not think I would be able to stay still enough for them to administer it.  They were also trying examine me, and finally discovered I was 5 cms dilated and said I was now in established labour, well I could have told them that I was!!!  Sometime during all this my mum arrived; she says I was on my knees and being rather stroppy with everyone! I remember I kept saying sorry to everyone. 

An anaesthetist arrived and said they would give me a spinal anaesthetic as this acted quicker than an epidural, but would only last for about 30 mins, but I needed to be very still despite the pain, so that’s what they did.  I never felt it go in or anything, but the relief was magic!  He then put in place the stuff needed for the epidural which could then be started as soon as the spinal anaesthetic wore off as it did about 30 mins later.  Once I was comfy I asked what time it was as the clock was behind me, mum said it was 8 o’clock.

Once the anaesthetic was working they were better able to examine me and attach a monitor to baby’s head, it kept falling off before as I could not keep still.  They were still worried about baby’s heart rate and decided to take blood samples from her head to check blood oxygen.  Most of the time there were four drs and a midwife in the room.  I kept asking them not to hurt my baby.  After the blood was checked and was ok they examined me again and said I was 10 cms dilated, this was about 10pm, they said I could begin to push in an hour and to get some rest. I did not get any rest as in less than half an hour they decided that they needed to get the baby out, this required an episiotomy and venthouse.   Once the venthouse suction cap was in place I was told to push and the baby’s head was delivered, the cord was round its neck so the Dr had to spend time gently removing it, once this was done I was told to push again and the rest of the baby was quickly delivered.  We were shown that we had a little girl; she was then taken cross the room to be checked out.  She never cried, but they assured us she was fine, she was quite alert with her eyes open and looking round.

Emily Catherine was born at 11.20 pm, weighing 5lb 8 ozs.

Some time later the placenta was delivered and then I was stitched, then we were left to have some time with our baby before I was transferred to the post natal ward.

Before I left delivery suite one of the Drs came to say she was sorry that things happened the way they did and that they had not been able to do what I had asked for in my birth plan.  I really did not mind as the main priority was to get Emily out safely.  The staff had kept us informed throughout and the atmosphere was very calm despite the problems. 

We were kept in hospital for 3 days and discharged home on Rob’s 30^th birthday. 

Few minutes old

It seems a bit strange that for most of her birthday I won't see her as she is at school all day and then having friends after school and then going to GFS, but we have a bowling party planned for Saturday.  I am hoping this is an easier option having put a lot of effort into previous parties and made myself ill.

This is Emily now 

Frozen card made using snowflake pattern from Stitching Cards