Wednesday, 21 May 2014

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.



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.

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