Thursday, 29 May 2014

A BEAUTIFUL EVENING (ST)ROLL




Before bed last night I managed to get out in the chair just as the sun was setting. The colours in the sky were incredible. There were oranges and reds and purples and blues and even a bit of green. It's a shame that my amateur photography doesn't really do it justice. It's nights like that that make me feel incredibly lucky to live in such a beautiful part of the world. 

Now that the weather is improving I think I'm going to try and get out of an evening more often. The fresh air and a change of scene last night did me the world of good.


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Thursday, 15 May 2014

MAKING THE DAYS COUNT




Since being signed off on sick leave there have been a lot of times when I've struggled to know what to do with myself. 

Pre-illness, I spent the majority of my time out and about and the remainder of my time planning to be out and about. When I stopped being able to leave the house so much, it became very apparent that I wasn't so good at keeping myself occupied at home.

For the first few weeks I found myself lying in front of endless episodes of 'Come Dine With Me' just because it happened to be on. There's nothing wrong with the odd 'Come Dine With Me' but it got a bit depressing when it was all my days consisted of. I wasn't at all engaged or content spending my time like that. I was constantly thinking about 'when I'm better'. 

When I realised I wasn't going to get my pre-illness life back overnight, I began trying to branch out in my low energy activities. I know I have to spend a large portion of each day resting so I figured it's important that the times when I feel less fatigued are filled as best as can possibly be. The more I've discovered activities within my capabilities that I actually want to spend my time doing, the less I've found myself wishing away the days until I feel better. 

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Wednesday, 14 May 2014

ME AWARENESS MONTH: AN OVERVIEW OF ME / CFS

What is ME / CFS?


ME / CFS is a fluctuating, long-term condition affecting the immune and central nervous systems. It goes by many names.

Most people will have heard of ME even if they do not know a great deal about it. ME stands for Myalgic Encephalomyelitis. Myalgia means muscle pain and encephalomyelitis means inflammation of the brain and spinal cord.The NHS tends to label the condition Chronic Fatigue Syndrome (CFS) but it is sometimes also diagnosed as Post Viral Fatigue Syndrome (PVFS). 


What causes ME / CFS?

It is unclear as yet what causes ME / CFS but it is thought that there are likely to be a number of factors involved. There is some evidence that certain infections can trigger the condition but it can also be triggered in other ways. 

More research is needed to identify the causes.


Who does ME / CFS affect?

ME / CFS can affect anyone. Estimates vary, but it is thought that there are around 250,000 people in the UK suffering from the condition.



What are the symptoms of ME / CFS?


People suffering from ME / CFS experience a wide range of symptoms and are affected to varying degrees. 


Here's an overview of some of the most common symptoms:

Fatigue

Extreme tiredness/exhaustion which does not go away with sleep or rest. A far more intense and drained feeling than ordinary tiredness. Results in weakness of the whole body.


Post Exertional Malaise


Flu-like feeling following minimal physical or mental exertion; sometimes immediate, sometimes delayed several hours or days. Often accompanied by sore throat and tender lymph glands



Sleep dysfunction

Inability to sleep or excessive sleeping. Sleep is unrefreshing.


Cognitive Difficulties


Forgetfulness, word-finding difficulties, slow information processing, attention difficulties, overall feeling of 'spaciness' or 'brain fog'

Pain

General muscle / joint pain and headaches


Mood Disturbances

Low mood, anxiety, panic attacks


Overload Phenomena

Dizziness, nausea, hypersensitivity to light, inability to block out background noise and focus on conversation, difficulties multi-tasking


Loss of thermostatic stability


Fluctuations in body temperature, excessive sweating and intolerance to extremes in air temperature


Is there a cure for ME / CFS?



There is no cure for ME / CFS. Certain treatments have been found to help some sufferers but not others. 

More information about ME / CFS can be found via the ME Association, Invest in ME or Action for ME.
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Monday, 5 May 2014

ME AWARENESS MONTH: Q&A ABOUT LIFE WITH ME





As I've got to know other people affected by ME / CFS, it's become clear that the lack of understanding about our condition is one of our biggest shared frustrations. The illness frequently misunderstood and there are still harmful misconceptions (e.g. it is 'a lazy person illness') floating about which present additional challenges for sufferers on top of managing the symptoms.

This month is International ME Awareness month with ME Awareness Day falling on 12th May.

I thought I'd do my bit to raise awareness through a couple of blog posts.

I'd always intended my blog to be a purely positive space with a focus on sharing specific things that have helped to keep me smiling. I've decided for the next few posts however, in the interest of raising awareness, to adjust my focus slightly to provide a full, honest and undisguised account of what living with the illness is really like (without sounding too moany hopefully!).


To start things off, I've filled out Louise Bibby's ME Awareness Blog Chain Questionnaire:

How long have you had ME / CFS?


I first started experiencing symptoms 18 months ago. These symptoms became progressively worse until I had to stop working 9 months ago.

Where do you live?


Isle of Lewis, Outer Hebrides, Scotland

Age


24



Things about you that people probably don’t know (non-illness-related):


I enter about 20 competitions a week

I would love to run a marathon.

I was once on Channel 5's Brainteaser. With the answer 'Terry Wogan', I won myself enough money to buy a car.

I am trying to teach myself to sew my own clothes.

Things people probably don’t know about your life with ME / CFS:

I now use a wheelchair as I am only able to walk very short distances without feeling dizzy or my legs shaking.

A coffee with friends will leave me in bed for the next few days feeling as if I have a hangover and the flu combined.

I have had to completely re-evaluate what makes me 'me' since no longer being able to do so many of the things I have always loved and have felt defined me.


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



How I am feeling varies a great deal from day to day. I'm constantly up and down. If I am out and about doing something it does not mean I am 'better', it probably just means that I have been saving up my limited energy supplies especially. I may well be in bed for days after as a result.





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


Saying "no" because I know its better for my health when my head is screaming out "LIFE'S TOO SHORT, SAY YES!".



Anything else you’d like to say before finishing?


ME / CFS is not just challenging for the person suffering from it. It's tough for the people around them too. I could not function on a day-to-day basis without help. I need physical support getting out of the bath as I'm prone to faint. I need reminders to take my tablets because my memory is so poor. I'm not able to support myself financially as I cannot work. I need assistance to cook myself a meal due to muscle weakness in my arms. If I get out for a meal, I need someone to read me the menu as there is too much going on around me for me to be able to focus on the writing. Sometimes I need help taking my clothes off at the end of the day as my body is too weak. Every once in a while I need a good old cry and someone to talk to. I'm very lucky as I have a patient caring boyfriend who is willing to do these things for me. I know its not always easy for him though and often wish I was more capable of checking he's alright too.


More information about the Blog Chain can be found here

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