Thursday, 17 May 2012

An Afternoon Stroll

I know that I have not yet updated with my Photo A Day Challenge - I have been taking photos every day and a catch up post is coming :)

My photos can also be found on blipfoto :)

But in the mean time I thought that you might enjoy another Mouse walk.

Today we went to Shipley Country Park in Derbyshire. It really is a lovely place to visit and is also accessible to everyone and plenty of spots to sit down before carrying on, also we had fun checking out some of the activity equipment that they have (think of it as a free green gym) some of it even I could do :)

The trip to the park was prompted by a promise to Ferd that I would take him swimming as I wouldn't let him dive into the canal the other day.

We are also checking out some more places that we can visit with Ferd (if you have any dog friendly suggestions for Nottinghamshire/Derbyshire let us know - Ferd says he likes swimming and anywhere that he can get to swim would be ace).

Saturday, 12 May 2012

ME and Fibromyalgia Awareness Day

Today is the International awareness day for two devastating diseases - ME (myalgic encephalomyelitis) and Fibromyalgia.

I have ME, I have had it for 14 years and counting. 

I have a chronic illness, I am disabled - I have recently been told (by the Disability and Employment Officer who is going to help me return to work) that I need to say that more - I am disabled. I have never been afraid to use the term, its just I tend to refer to my chronic illness rather than my disability.

ME took away the opportunities of youth. While I should have been going out, having fun, experimenting, I was trapped in a body on fire with pain, barely able to stay awake. When I did manage to do something 'normal' what people didn't see was me afterwards behind closed doors in tears. 

I was the subject of village gossip (I wasn't really ill, I was taking advantage, I was lazy...). Even the system that was meant to help me didnt understand and I was branded a lair at a benefits tribunal.

No one would lie about having ME.

Those early years I was pretty much bed bound. I was fiercely independent and would manage personal care (well what teenager really wants their Mum to help them to the loo) but this would leave me unable to do anything else. I was lucky I had my parents to look after me. If I had been alone then I would either still be bed bound or I simply wouldn't have survived.

My life is a balancing act. I have regained the ability to do things to an extent. Because of my traumatic dealings with the benefits system I decided my only chance at life was to find a job that would be flexible, I knew that wouldn't be possible with mediocre A level results. I never thought that they would get me into Uni but they did because I also had something else - life experience (it took 2 years to regain enough health to go to uni). Who knew that ME would be life experience. I was able to study because I didnt do normal student things. I couldn't go into Halls (I wouldn't have survived). I didn't go out and the key was being upfront with the Uni - I went as a disabled student. I went to a uni that taught modular course so holidays were my time nothing was carried over the terms. The uni had terms - set blocks and I was able to pick my subjects - we had the core ones but others we could pick and choose meaning I could build my timetable. It was hard, I had to change half of my degree because I could cope and I missed bits (ok I missed pretty much the whole of my last term) but I got through. 

I went into full time work. Now I have coped with full time work. I could cope again but I am realising at what cost. I have been living to work rather than working to live. 

I have companion conditions to ME. I also have IBS and I suffer from Raynauds. In addition I have PCOS and various joint issues, and a chronic back problem (I believe they class it as mechanical failure now) yep I am falling apart. I realise that my body has been on a downward decline because I have been abusing it, not giving it time to repair properly, and because I have been trying to do too much. 

I thought I knew how to deal with my ME and I did, somethings I did right, somethings not so right. But what I haven't taken into account is changes over time and re-learning how to deal with things. I havent really been listening to my body - its taken some pretty serious chest infections, paramedics picking me off of the floor, being barely able to walk and a serious episode of anxiety to make me listen. 

I was really lucky to have been given the opportunity to attend a back and pain management course and I learnt loads about pain and pain management. But I also learnt that most of it I already knew I just didnt have confidence in my knowledge. 

So what is ME?

This is information on a leaflet called explaining ME to people that I have got from the ME Association.

  • ME is a disabling illness although the visible signs and restrictions that people normally associate with being disabled may not always be obvious. Some people with ME often look well
  • ME can be characterised by severe symptoms that can be made worse by minimal physical or mental exertion
  • The severity and symptoms of ME varies from person to person
  • ME can vary for day to day and even throughout the day. It can, on occasion, vary quite suddenly - from near normal health to feeling very ill and exhausted
  • Sometimes a persons health can deteriorate quite rapidly, leading to complete exhaustion
  • The onset of other symptoms can come on just as suddenly.
These are just some of the symptoms I have:

  • Chronic fatigue - most of the time
  • Pain in my muscles - most of the time
  • Pain in my nerves - most of the time
  • Muscle spasms - some of the time
  • Cognitive dysfunction - all the time
  • Dizziness and balance problems - some of the time
  • Headaches (including migraines)  - all the time
  • Sensitivity to loud noise - all the time
  • Sensitivity to bright lights - all the time
  • Pins and needles - some of the time
  • Sensitivity to smells - some of the time
  • Hypersomnia - some of the time
  • Insomnia - some of the time
  • Poor quality sleep - some of the time
  • Unrefreshing sleep - most of the time
  • Cold hands and feet - all the time (I have raynauds)
  • Sore throats - most of the time
  • Enlarges glands - some of the time
  • Allergies to drugs - all the time 
  • Allergies to chemicals - all the time
  • IBS - all the time
  • Nausea and sickness - most of the time
  • Eye problems (dry eye) - most of the time (summer) some of the time (winter)
I am also intolerant to sunlight and possibly UV light - but its hard to get doctors to understand that strong sunlight makes me sleepy and the after effects of being outside makes me feel like I have a low grade fever and really unwell, as its worse during the summer I believe I have a UV sensitivity. 

The list would have read a little differently 14 years ago - pretty much everything would have been - all the time.

There are more symptoms that I could add.

To find out more about ME click here or google there has recently been a good newspaper article read it here

I am one of the lucky ones - while I will not recover I am better than I was I have a chance at life. Please spare a thought for those who are trapped in their bodies - drowning in a sea of pain. I had a glimpse of that world and I am terrified of going back. Its pain that I would not wish on anyone.

ME is real.
ME is not in my mind.
ME needs to be taken seriously.
ME needs proper research.
ME needs understanding not scorn.

Wednesday, 2 May 2012


You may have noticed that there is no photo a day post for yesterday. Well there is a photo but it has yet to be posted - I will be taking a photo each day but I wont post them until the weekend.

As to why - well the title of this post will give you an insight.

As you know I am currently signed off sick from the desk job. 

I have some meetings coming come with some services that will help and support me in talking to work and make sure that both parties interests are protected and well basically so I am not alone a tiny Mouse against a BIG mean thing. 

I also recently rejoined the ME Association and have spent time re-learning about ME.

I set myself the task of learning and putting together information to help with my case - but then I sort of hit a big wall.

I have been finding 'doing' difficult. I get side tracked by things or so focused on something that I dont do other things - which in turn makes them even bigger jobs - which in turn adds to my feelings of being overwhelmed. 

And the days are just speeding by with me always seeming to run behind. 

I need to write to work to let them know what's happening - but then a letter turned up - I opened it so that was an improvement but then I hit that wall and its taken me a few more days to work up to writing that letter. 

Now I had taken control and asked for NO emails, but guess what? Yep an email. I havent even been able to read it. My anxiety levels are getting out of control. I know what I need to do but I cant. 

I fear another letter turned up today - I dont really know. I cant face it my heart is hammering in my chest I fear a heart attack. 

All of that has meant that the letter I was going to write and get in the post on Monday is still yet to be written.

And so I continue to hide and obsess over things.

I am obsessing over the thing that I can control - Mouse. But even with that I am a little overwhelmed - I want to have everything done now, right this minute. I want things to come together at a snap of my fingers. I find that my time is consumed and there is little or no time to do anything else

I need to break it all down into little chunks, manageable bits for each day - I need to write a list and stick to it.

I am making myself decline again I can see that. I have decided that I cant return to working full time - I have realised that I have not given myself time to heal after a horrendous few years which has included some very nasty infections where I realise with hindsight that I returned to work far too soon (but then its hard to say yep I really need at least 3 months to get over that chest infection).

So bite sized chunks and a daily to do list that doesnt overwhelm me and where I can feel a sense of achievement each day.

I may be disabled, I may have a chronic illness, complex medical issues, but I am one of the lucky ones I am able to get about I am able to work (with support, understanding and flexibility) so why do I feel like I am being thrown on the scrap heap?
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