This is ME blog chain

I thought I would do Louise Bibby's This is M.E. blog chain. It is a little late, but I thought it would be a good way to introduce myself, and after all it is still M.E. awareness month!

What is your name & how long have you had ME / CFS?

My name is Jenny, I go by Jenny Helen a lot on the internet because I find that including my middle name makes it much more likely that the username (or blog title) that I want to use will be available.

I first crashed at the beginning of November in 2007, but I had been feeling increasingly unwell for several months, how much of it was a viral infection (I later tested positive for Glandular fever) and how much of it was M.E. is difficult to say, I don't really think there is a point where one starts and he other begins. I remember feeling 'odd' in May 2007, and in my mind that is when it all began, so I suppose 7 years.

Where do you live?

In the south west of England.

Age 

21

Tell us 5 things about you that the people in your life probably don’t know (non-illness-related):

1. In the last year and a half I have become a knitter, I have now learn to knit and made myself two jumpers! 
2. I enjoy cooking and spending time with others, I imagine my 'future self' to be someone who has large diner parties and invites people round for food often. 
3. I really enjoyed school and could never pick a favourite subject, I knew which my three least favourite subjects were, one of which was biology.  ...I now study biochemistry!
4. I am learning to dressmake! My mum is gradually teaching me during my uni holidays with old fabric and a 1970's sewing machine! I have bought my first pattern and I am half way through my first project. Sewing is really rewarding and very satisfying but the potential for disaster is always there and it dose require a lot of patients. 
5. Most people in my life don't know that I am a blogger! It is not something I have shared with them yet!

Tell us 5 things about you that the people in your life probably don’t know about your life with CFS / ME:

1. Before having M.E. I played guitar for many years, when I became ill it was one of the last things that I gave up as I slowly decreased my commitments. Even though I have been recovering for many years and my health has improved a lot over the years, I still do not have enough energy to play. I dabble every now an then, but I always get pain after a few minutes and overall it is more upsetting to try and play. If I am around guitarists it is always bitter sweet. 
2. Often I suffer from brain fog to the point at which I can't read, this can happen as much as once a week. It can be embarrassing in public especially when asked to read, it is very difficult to say "no sorry I can't read right now" when your an adult! 
3. I don't know where I would be without my sister. When I became ill with ME my 'real life' friends slowly faded away, I began to sit with my sister at college, eventually her friends became my friends. I am eternally grateful to her for allowing me to do this (not everyone would) and to her friends for their acceptance. 
4. My brother is a trooper! Every day that I could manage for over a year he took me for a walk as part of my pacing, this is something I cannot repay him for. 
5. No matter how many hobbies I try nothing will fill that sports shaped hole. My heart aches to be on a rainy hockey pitch.

What one thing do you think most people wouldn't know about living with ME / CFS that you’d like them to know?

You don't get used to being ill. It is very hard to define what 'ill' feels like but I'm sure that most people can relate to that feeling you get once every year or so when you wake up in the morning and you know you are ill. I'm not talking about a cold that you can push through and get on with the rest of your day, I'm talking about an extremely bad cold or the flu. That groggy, heavy, sluggish feeling that makes you reach for your phone to call in sick as soon as you wake up in the morning because your body is screaming out to you that today you shouldn't get out of bed. For the first 3 years of my illness I would feel like this every day, every day feels like a 'sick day'. It doesn't get easier to deal with you just get better at hiding it.

What is the most frustrating aspect for you of living with ME / CFS?

The lack of communication! Unfortunately our society is not currently equipped to deal with invisible illnesses very well. I constantly find that when I'm in a social situation where I feel I need to bring up my health. There is something that sort of stops me just before I open my mouth, my sort of 'social acceptability o-meter'. This is based on past experience where talking about M.E. has lead to rooms being silenced forcing everyone to feel very uncomfortable! This can silence me. I am learning to push through this barrier and I am getting better at it. But it frustrates me that the burden falls on us, the sick ones to make the right choice, and it pains me that that the choice is so difficult to make.

Anything else you’d like to say before finishing?

I firmly believe that when a person becomes unwell both that person and their friends want to maintain the friendship equally as badly. Unfortunately this doesn't always happen, it is often no ones fault, its just that people often aren't very well equipped to deal with the new situation.

Here is my list of top tips for dealing with people with M.E.
-Have complete acceptance, do not question or doubt.
-Try to be as flexible as possible, if they cancel it is more than likely that they are devastated about it.
-Have the insight that they are probably feeling much worse than they are letting on almost all of the time.
-Do not forget the few times they do share with you how they are feeling.

Image source

Spoonie?

What is a Spoonie?  Or should I say who is a Spoonie?

The term spoonie was invented by Christine Miserandino from ButYouDon'tLookSick.com, she is a sufferer of Lupus who invented The Spoon Theory one day when trying to explain to her friend what it is like to suffer from a chronic illness.

The Spoon Theory explains how someone with a chronic illness has a limited amount of energy "spoons", and that once all the "spoons" are gone for each day they are gone.  If you do more activity than you should, you are stealing "spoons" from the next day.  Some days a chronically ill person will have less "spoons" available to them than others due to the fluctuation of the illness, a day like this could be refereed to as a "low spoon day".  If you over do it, you could say "I'm borrowing spoons".

The Spoon Theory has now spread world wide, and is used by people with all types of invisible chronic illness to describe how their condition affects them.

Spoonie has become a name for someone who identify with the Spoon Theory, it is self adopted.

Photography by Sarah H

Fun things to do when you have M.E. Part 1

When you have a chronic illness it can be difficult to know how to teat yourself. Here is list of some of the things that I do for fun!

Go for a car ride

If you have a family member who can take you out for a scenic car ride it can really lift the spirits to see something new. I love going back to the same places and watching the seasons change. It is also good to go to places where you are likely to see nature or animals.

Whilst looking for an appropriate photo for this post I found the following picture.  A few years ago my parents took me out for a drive over the hills to try and find some wild horses. We stopped nearby and gradually they came over. One got a bit too close for comfort though and started nibbling on the windscreen wiper! This was quite a shocking experience for me trapped in the back seat!

Always have a camera to hand!

Write a letter

They are great to receive, and if you write one you might get one back!  This can be especially good for people who struggle with screen glare.  It also allows you to take as many breaks as you want without disturbing the other person unlike phoning and skyping.  You can take as long as you want writing them too, and no one will know!  There is something very therapeutic about spending time poring over a heart felt letter, it is much more satisfying than email!  You have the opportunity to show a lot of care and attention, to really make the other person feel valued.  A few of my friendships have really benefited from letter writing and some even began that way!  Receiving a surprise letter could make a person's week, it is amazing to know that you can bring another person such joy!

Papercase stationary

Watch a T.V. show film with friends or family

I have watched a few T.V. series with friends; it's a really good way of making sure you see each other.  As an unwell person life can get quite mundane sometimes, and it can be difficult to find new things to discuss.  For me something as simple as this can really make the difference in a friendship.  Sometimes it's the small things that mean the most.

Many of my birthday parties over the years have been film evenings.  I usually invite about 5-10 people and order in food.  For my 21st birthday party we watched Dan in Real Life and ate pizza!

Image source

Have a pamper session

Do your hair, or get someone else to do it for you, paint your nails, have a massage, use a foot spar, use a face mask. The opportunities are endless! All of theses things are good bonding time with whoever your doing it with.  If your doing it on our own, it is top quality 'me time'.

When I meet up with my M.E. friends there are almost always face masks involved. 

Photography by Sarah H 

There are loads of other ways to treat yourself when you have a chronic illness, I have called this part 1.  Looking back on my M.E. journey these things have brought me a lot of joy!  Perhaps you do some of these things too.

Why am I writing this blog?

I don't know if this is something I will keep up with, but as it is M.E. awareness week I am feeling inspired.  I always knew there must be lots of M.E. bloggers out there, but it hasn't been until this year that I have found a few that I can relate too.  Finding these bloggers has inspired me to start my own.

I am in need of a space to help me organise my thoughts.  As a university student it is easy to be swept up by everything else going on around me.  If I am not careful I find myself gradually comparing my ability to others, and expecting to be able to keep up with them.  Away from home there is no one to remind me of my limits and the fact that I am different to my course mates.  I need to learn to do this myself and I think one good way is to write about it.

I have really benefited from reading other peoples stories and finding out how they cope with their long term health problems.  I have no qualms with sharing, and the thought that other people may benefit from my posts is a nice one.

I also intend for this blog to be a place that I can point people to if they would like to find out more abut M.E. and how it has affected my life.

Photography by Sarah H

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