About Me

My photo
Newport, Gwent, United Kingdom
I have to manage my FM very carefully, I am a wife and mum of 3 kids, and I work full time. I have good days and bad. I love learning. This is my experience of Fibromyalgia, I'm not promoting any products, just sharing what helps me.

Sunday, 14 April 2013

Living or Coping?

Hi All,

To start, as usual:

Sleep: 5
Pain: 3
Migraine: 1
Fibrofog: 3
IBS: 2
Tiredness: 5

Dee writing this week.

I've had a very busy work week and so have been away from home most of the week.  Spending so much time with my colleagues meant that I had the opportunity to explain about my Fibro.

On my return home I felt the need to do some more research to see how other people cope and if there is any more than I can do, or things I'm not doing that I should be.  I came across a Facebook page which asked the question "Are you Living or Just Coping?"  Having given this a lot of thought I've decided that I go from one to the other.  When I have a flair up I revert to coping, and as it passes I start to move back into the land of the living.

One thing I really have to thank my husband for is that he will never let me just settle.  When I'm feeling just "ok" it can be very tempting to accept that, but he will always push me to want more than that for myself.  He doesn't drag me into this, but is really encouraging.  Although half the time he doesn't know he's doing it! 

The Facebook page I found encourages us to look at the resources we have, in order to see the resources we need.  These resources we have are those that we fall back on when we are just coping.  For me they are my supportive family, my strength of character, my understanding doctor, and a job that I love.  The resources that I need are less clear to me, which is why I'm researching more this week.  However so far I have identified exercise that I can commit to and is achievable, finding a support group and increasing my meditation.  Although I am realistic that there are other things which I haven't thought of yet.

I'd be really interested to hear from anyone who has set goals of their own, and how they might have achieved them?  I'd also really welcome advice on how to set about achieving my own objectives!

Have a good week,

Dee and Amy

Saturday, 6 April 2013

Have Wheels, Will Travel


To start; this week's ratings:

Sleep: 4
Pain: 3
Migraine: 5
Fibrofog: 2
IBS: 4
Tiredness: 5

As you can see, for Mum this week has been a bit of a doozy.  She's been out of her normal routine due a week's holiday from work.  The week started with a mini break to Oxford, but unfortunately Mum feels like gradually as she has relaxed she has declined into a "dude" (her words) of a migraine which lasted all day Saturday.

However, whilst in Oxford and struggling to manage even twenty minutes of wandering around antique shops (and never one to be put off shopping for long) Mum had a brainwave.  Dad arranged for them to rent a wheelchair so that she could manage to spend the day mobile but not exhausted within a few minutes.

It proved to be a hit; they managed a good few hours of wandering around shops and Mum managed to both be out for a period of time and to enjoy herself; as shopping and related activities can be very difficult when Mum can't manage to walk around for long at all.  The chair was such a success that they've bought one to keep in the car, we are really hoping this will improve the quality of time Mum can spend out and about.  This is especially since we in Wales have had what feels like the unprecedented luxury of two vaguely sunny days in a row.

Perhaps anyone else has tried a chair or other ways of managing getting around more comfortably?

Mum is hoping the chair is temporary, and is quite concerned that she could become reliant on it.  Does anyone have any advice for her on that?

As for me, when the chair arrive my brother and I attempted a wheelchair obstacle course around the house - trying to get into the kitchen and to the front door without crashing.  Much easier said than done, but I am the proud winner.  We have a lot more respect for people that use these chairs on a daily basis - although its helping Mum a lot, they're still not at all easy to manoeuvre.

Have a good week, and let us know your thoughts.

Dee and Amy