What I learned from my relapse

Two big realisations have come from my "university relapse".  They are both things that I should have been told right in the beginning when I first became ill.  But that's the problem with M.E, so little is known we have to find everything out for ourselves!

You never truly recover from M.E.

Up until my stint at university I refereed to myself as recovered partly due to wishful thinking, partly because I had been mislead to believe that this was possible.  When I first got ill the children's specialist who saw me (about a year into my illness) told me that most children with M.E. recover.  That was all the hope I had been given, but I have clung on to that hope!  No one had ever told me otherwise, so I believed it, it's only natural to do so!

Every time that I have a relapse - mild or severe.  I take to the internet, to try and research my illness a little more, to see what is out there that wasn't the last time I looked.  This time, there was a lot of information on recovery.  I had never really got my head around the statistics of recovering from M.E.  There always seemed to be conflicting information, and I suppose I wanted to believe that I would truly recover so I didn't think much more about it.  Form my recent reading though it seems that most people will always have M.E. to some extent.  If a person is lucky enough to be unaffected by daily symptoms, then they are just mildly affected.  (We have a big issue with the term recovery in the M.E. community, people interpret it in different ways.)

The repercussions of this are that I need to start living my life and stop waiting for a time when I am fit and healthy.  I have assumed that one day I will get my life back, and have time to relax and soak everything in.  In the mean time working overworking so that my "future healthy self" would have the best life possible.  This type of thinking needs to stop!  Its time to start living for the now, and appreciate life for what it is, rather than waiting for an uncertain future to materialise.  I can do that, I have a nice life, and nice friends and family.

Progress that has been made can be lost overnight  

The second point is perhaps more important, it is that no matter how much I recover I will never reach a safety point.  A point of no-return is fictional with M.E.  Pacing and planning will always have to be a major part of my life, no matter how well I feel.  In other words now I have M.E. and always will do whether my ability is 99% or 1%.

Before I started university, I had a gap year to solely work on improving my health, I made vast improvements over the course of about 15 months and I was loving life.  After being ill for 6 years and being dragged through my "compulsory education" and A-levels I now had time to focus on me.  By the end of the year  I was playing badminton once a week, walking about 3 miles a day and volunteering for 3 or 4 days a week for between 2 and 4 hours.  For the first time since the start of my illness I felt well, strong and positive, even in control of my health.  Every medical professional that I saw as I was trying to decide whether to go to university or not encouraged, even persuaded me to go.  No one ever suggested to me that the recovery I had made could go backwards.  Specialists had always implied that progress was undo-able.

From this I have realised that I need to appreciate my health at the level it is at, and respect the fact that it can improve or worsen with very little warning or adjustment from me.  I should try to do everything that I can to give myself the best chance of a good life, because the future is uncertain.  I know that I can't bank on maintaining my health, no matter how much I have "saved up".

Missing the hills!

I used to go out walking a lot as I child, as a family we were one of these "walking families" every holiday was spent in a tent or a youth hostel somewhere in the UK the last walking holiday we had was to Iceland.

As a child I didn't always appreciate our holidays, it didn't seem cool and I didn't know anyone else who did this.  However as I got older I began to love it more and more.  There is nothing like getting out and about in the fresh air, and it is such a good way to bond with family.  I have many happy memories of playing with my family on camp sites in the evening and reaching breath breaking hilltop views during the day!

When I reached year 10, suddenly walking became "the thing to do" at my school!  Growing up we had the Quantocks right on our doorstep, and Dartmoor not too far away so there were plenty of opportunities to get out there.  A very popular teacher decided to introduce the Ten Tors Challenge to my year group as an extracurricular activity, it created a real buzz around the school.  He set up a boot camp style search to find the ultimate Ten Tors team.  It was the first time that anything like this had ever been done at our school and everyone was very excited.  Over 100 students applied, and there were only 6 places.  This was my chance!  A series of expeditions would be run to narrow down the applicants.  I didn't even mind if I didn't get picked, I just wanted to get out walking with my friends!  I went along to the weekly meetings where we would learn skills such as map reading and how to use our equipment properly, we were also taught survival.  My friends and I watched as our numbers diminished.  First the group was halved, then 10 people were removed at once.  It was brutal.  The teachers who were leading it made a big deal over the competition, and we hadn't even gone on our first walk yet!  My best friend and I planned to go walking to get some extra practice in, we were going to fill our rucksacks and walk along the river to start off with.  At this time my M.E. symptoms begun.  I started to miss more and more time of school, and kept the teachers informed, but they still wanted me in the group.  When it got to the point where I was no longer doing P.E. I spoke to them again, they decided to keep me in for a while in case my health improved.  One of them even tried to help by suggesting supplements to take in the hope that I might improve. Eventually I dropped out once I had missed several weeks of the meetings.

At around about the same time, the Duke of Edinburgh award started for my year group, my Dad had offered to help, and we had begun going for walks together on the Quantock Hills in the evening.  He also went to the weekly evening meetings at school, sometimes leading the sessions with another parent and a member of staff.  (Let me tell you, it's one thing meeting up in school with all your friends in non-school uniform, but it's another when if your dad is there!)  As with almost everything in my life at that time, I eventually had to drop out.  However Dad was already committed, so went ahead and began to lead groups on walks.  Not only was I missing a significant amount of school, but my friends were seeing more of my Dad than me!  The point of this, is that it was something that I wanted to do and had loved but wasn't able to take part in.

When I was at Exeter, once again a lot of people around me seemed to be walkers.  Also at almost any point in the city, you can see the surrounding hills!  Exeter is both a very small, and very hilly city!  Although I was mostly able to get to my lectures, and get to and from the shops.  I relied heavily on public transport and was greatly limited by how far I could walk, it affected me on a day to day basis.  I was trapped!  I had pangs of wanting to get out there and experience the fresh air.

Since I have come home from university, although I have been less mobile and unable to get out on my own.  My parents have been able to take me up to the hills.  We are constantly going up to the Quantoks, we sit and watch the horses and sheep with their lambs during the daytime.  In the night we look for deer on the road, and find clearings where we can get see the stars.  Most notably, my Dad took me for a drive the other night, and we went to the exact spot where we used to do our late night walks.  I couldn't help but think that life had gone full circle.  I wasn't walking, but we were there all the same, and it hadn't changed!  I find it comforting that no matter what happens, some things will always be the same, and nature is one of those things.  One day, I would like to get my walking boots back on, and go out walking in the hills, but for now I am happy being content with visiting nature from my car and staying in the car park, knowing that it will still be there for me if/when I am ready to get walking again!

What do you like to do?

Advice from a friend of a friend

My Dad is a keen cyclist, he spends many weekends out cycling with his friends, often clocking up 30 or 40 miles.  He's a MAMIL if you will (Middle Aged Man in Lycra) and I like to think he's having a merry old time.

Soon after I had to return home from university due to my M.E, my Dad went for a ride.  He got talking to one of his friends whilst lagging at the back of the group, and said "my daughter has just had to return home from university due to her M.E." his racing friend replied "oh I have M.E. you wouldn't know now, but I still have to be careful".  My Dad was so shocked and couldn't believe it.  You may be sceptical yourself, but Dad became convinced after talking to him for a while and I really do think that this man has the same disease as me.  Even though I hardly have the energy to walk around my house and spend most of my time in bed, and he climbs mountains and cycles for 30 or 40 miles at a time.  Mad you may think, but he's not trying to claim there is a secret cure.

There are a few bits of information that he passed on, that have helped both my Dad and me in the last few months.  One is that M.E. is definitely a physical illness, you cannot dictate what you want it to do, how much energy you will have, or pain you will be in.  You must respect it for what it is, and most importantly of all it is absolutely vital to follow the body's lead.  No amount of positive thinking or alternative therapy can help it, you cannot rush recovery, or even know when/if it will happen.  All of these things made me convinced that Simon has the same illness as me, because these are truths that I have come to know in my own life.  It was good to hear them from someone else though, because they are so easily forgotten - if only other people would say them too.

One day I'll get back to the hobbies of a 4 year old me!

The best advice he gave me is that "coping isn't enough" I think that's going to be one of my new mantras now.  For so many years I have coped, and people have said oh how well you are doing, you are coping... but if you are just surviving, just getting by you are not living, and most of all not going to recover.

All health is fragile, and shouldn't be taken advantage of, our society idolises the idea of pushing our bodies to their limits and living life to the full, seeking the thrill.  This is not helpful to those who suffer from M.E. or any other chronic illness to that matter.  The key is pacing, avoiding toxins e.g. food intolerances, and lots and lots of rest.

My Dad says that come to think of it, his friend does often have days off from work and misses cycle rides due to being unwell.  This shows that even though he has got to the point where he can climb mountains, Simon still has to keep his health in check.  He is by no-means fully recovered, but has got to the point where he can manage his health, and has a pretty good quality of life.

It is important to remember that not all M.E. behaves the same, some people find that their health deteriorates no matter what they do, and others cannot improve.  However for those of us who do find that we are able to build on our health with rest and pacing, here is a smidgen of hope!  For more on what I've written about M.E. see here.