ME sufferer
Suzy

Age: 20

Diagnosed: 1997

It's difficult to condense over three years of awful experiences and paperwork into a short account that can convey the magnitude and the seriousness of the situation concerning the illness ME, but we will try.

Suzanne was a high achiever, academically and in sports (eg. captain of her School and village netball team and playing for the county 2 years before she reached selection age).

 

As young as Suzy was, her mind was set on travelling. Although just 13 at the beginning of 2001, Suzy holidayed with different friends and their families to Paris, skiing in the Alps, the Canary Islands, and then in England with her own family----- all in that one year.  Even
after all this, she was thinking of yet another trip abroad with a classmate and her parents at the end of the year.

Suzy had a lot of friends.  She never had a bad word to say about anybody and was good company to whomever she was with.

Then at Christmas 2001, age 14, she was struck down with worsening ME.

That Christmas, some months on from when she'd first experienced several changes in how she was feeling (Suzy, being Suzy, kept these changes to herself) everything suddenly gained a higher profile.

The symptoms Suzanne was experiencing up until now had included variations in her behaviour, such as lapses in concentration and periods of physical 'disinterest', but now they moved on to another level.  It became obvious that something serious was happening to her.

A nasty deterioration started to set in quickly.  Apart from other worsening problems that Suzy began to experience, she found herself needing to lie down for most of the day since any activity, physical or mental, was becoming impossible.

Less than a year on from the start of this bad deterioration, the illness turned into a nightmare of the worst kind.

The months dragged by.  For the first two years they saw Suzanne deteriorating in her bed-bound existence, often unable to communicate (let alone hold a spoon) even by blinking or finger movement.

 

By the time 8 months had passed Suzanne could only manage to wake up for about 2 or 3 ten minute periods----- if we were lucky ----- out of each of the two separate hours in the day we chose to try and wake her. In order for this to happen Mum or Dad had to spend 3 hours sitting quite still and silent in the cold dark beside her bed.

Eventually (making it sound much simpler than the choice actually was) we decided to reduce this procedure to just once a day instead of twice, and to aim for one hour of time awake for Suzy between 7 and 8 in the evenings.

As before, Suzy would only wake up after Mum or Dad had sat beside her bed for 3 hours gently trying, very occasionally, to coax her out of her comatose state.

We gradually reduced this 3 hour period, but it took over 18 months (until around June 2004) of painfully slow improvement in Suzy's state, for us to dispense with it altogether.

Suzy's motivation for waking had always been that she was desperate to try to eat (even though this wasn't always possible), as she was so fearful of being tube fed as we were told must be the case----- just as she begged us not to let her be hospitalised, as this was also something we were facing.
(It's only by understanding gained from living with this condition that our desperation to keep our daughter at home could be understood.)

Suzy was in a "living death" state for the first two years after her illness became really severe.  Many would still regard her as such since her condition remains very sad.

Even up to around October 2004, two people in the room or one person stringing more than three sentences together was too much for her.  Thankfully, things in this respect have now improved.  Though the two people are still mostly restricted to Mum and Dad, wonderful exceptions have begun to happen recently for 10 - 15 minutes later in the day.

Suzy's life was, and still is (except for her fans no longer being continually on), spent in a perpetually darkened, unheated, noise-free room. There are blankets over the curtains---- despite it being a north facing room; bedside fans are periodically on---- even though she only wears thin short-sleeved T-shirts all year round and; ear plugs in----- even though the room is in a very quiet location).

But this so sad picture of Suzy's existence has also been showing a trend of, very inconsistent, improvement since Christmas 2004.

The fact that she can now manage a whole unbroken hour at nights for eating without us having to sit beside her first, hardly seems anything to shout about, but it's made a big difference to the last 12 months or so.

If we ever thought we were wrong in our refusal to allow her to be admitted to hospital and declining the use of recommended drugs, we thought of the awful experiences of some of our contacts.  These have cemented our belief that there is no understanding at all to be found in hospitals.

Now, three years on after living with the illness, we know that there are misjudgements about ME (particularly very severe ME) and early doubts we had of these judgements have become completely vindicated as far as we are concerned.

Looking back, although things are still terrible for Suzy, they are much better than they were a year ago.  Suzy can even listen to a couple of tracks from a record and watch 20 minutes of TV most days, which was out of the question up to the middle of last year.

There is a positive movement---- albeit inconsistent---- undoubtedly happening in Suzy's condition.  In fact recently it is happening relatively quickly.  We are just so frightened of when and where it might stop.

We feel this improvement has emerged because of our developing confidence in being able to reject medical approaches to Suzy's severe ME, and to the departures we chose to make from these conventional treatments.

For example:

1.  No longer trying to wake Suzy twice a day.
     This was a very difficult decision, which we knew would be a controversial
     one.  But the fact that after a few months she managed her hour awake without
     us having to sit silently beside her, and that the hour ceased to be broken,
     reassured us that we'd done the right thing.

2.  Forgetting about the concept of 'graded exercise'
     We were certain that the graded exercise program Suzy followed in the early
     stages of her ME was a big mistake.  We had no hesitation in no longer sticking
     to any kind of graded exercise routine (which might be beneficial for those
     patients with less severe ME).  Instead we took the approach of letting Suzy
     do what she felt she could do----- which for nearly two years was nothing
     at all.
     This is a second option we are convinced we made the right choice over.

3.  Stopping the involvement of psychologists
     A third decision we know to have been the right decision, was to stop the
     involvement of psychologists in an illness we are convinced is not psychological.

4.  Choosing to see less (which eventually became nothing) of doctors
     We eventually accepted that to us, the only safe path was to manage Suzy
     ourselves by following our own instincts.  We had become more and more sure
     that Suzy needed as much of a stress free environment as possible; an environment
     we tried to ensure she got.

Public awareness of ME needs to be addressed.

Much of the treatment for the condition, where it is recognised, seems to
centre on management of the illness.

Biochemical research into ME is so important to allow an understanding of the illness that destroys lives.  Evidence for gene malfunction in ME sufferers is beginning to emerge, as well as evidence for other physical factors, such as malformed and malfunctioning mitochondria (sites of energy production in cells).

Research results are suggesting so strongly that there are physical / biological reasons for this illness.

Funding and emphasis must be given to establishing the biological cause of ME so that appropriate treatment may be given.

The ME Association and the registered charity MERGE are examples of organisations involved in this research.

It is true to say, as we soon realised, that in cases of ME the more severe your illness the more forgotten you are.

-
From account written in early part of 2005.

Suzy's present condition (27th June 05)

The last 7 or 8 months have seen major improvements in Suzy's condition.

Though things are far from anywhere near being close to being what we would have hoped for after more than 3 years into this so sad unexplained illness, the recent changes are such that we are now filled with hope.

Suzy is still totally bed bound and isolated in a cold room.  But the room no longer has to be completely noise or light free even though it does come close to it.

What is amazing is that even though Suzy is still unable to turn herself, the last few weeks have seen us able to wheel her into the lounge for 10 minutes on some days.  This has been a major breakthrough and has been the next step on from the 10:00 am cup of tea she has been able to take most days for several months now.

Once, on one of these 10 minute sessions, Suzy asked that big brother Nick carried her upstairs so she could see rooms she'd not seen for 3 years!

Suzy can even write a sentence or two in a card on a good day now.  She is desperate to do this as she so much wants to communicate with people.  Maybe after a week Suzy will have written enough in the card to send it to a friend or relative, again that she'll not have seen for at least 3 years.

Another wonderful thing that has happened is there have been occasions, so far rare, where Suzy has said ?I can see a friend now?  Mum has then made a quick phone call to see if one of the many friends Suzy knew so well is available and can get straight round to see us.  Hopefully this is something which is permanent and will grow.

The effects of seeing and talking to friends for a few minutes means so much to Suzy.