Becoming Aware

My choice to keep this blog anonymous is one based on my focus on creating health in my life.  I do not wish to become known as “the woman with ME”.  In fact, many of my friends were not even aware I was ill before I was diagnosed.  I guess this mostly was due to the fact that I myself was in denial about how ill I’d actually become.

About a month or so after being diagnosed I became quite ill, the “flu” that I’d been coming down with 2-3 times a year hit me hard.  It always started with a sore throat, I knew if I’d got that sore throat & it didn’t go away, what I might expect.  And it would knock me off my feet for about 10-14 days, and take about a week to recover.  One of the first times I got it I had my doctor call out to my house, I felt like I was dying- I was out of breath just lying down, and making it upstairs to go to the toilet was a massive ordeal (I’d camped out under my duvet on the sofa vegging out watching crappy telly because my mind couldn’t focus on anything).  The doctor told me that I had a virus; ie flu and that all I could do was drink plenty of fluids & rest.  So that I did.  And the next time I had it, that’s what I did again, no point annoying the doctor unnecessarily was there?  Trouble is, that’s what I continued to do for the next 15 years.  Until this year, when I decided that really, loosing 6-9 weeks of my year every year due to illness really wasn’t acceptable for me.

And here we are, with a diagnosis, and then I became really quite ill- worse than I’d ever experienced before.  I was in bed for 2 months, during the 2^nd month I’d get friends to bring me out to socialise for a few hours- Christmas Eve & New Years Eve etc, just to keep me sane.  But really, I probably shouldn’t have left the house.  Getting up to go to the toilet was a big deal, lying down I was out of breath. Cooking, well that was a challenge, as was bathing, washing up and walking Goldie.  I had to ask friends to help me out, which they duly did & I am so very grateful for them.  The picked up groceries for me, walked Goldie, cooked for me, did my washing up.  I was very, very grateful to them.  And at the same time felt guilty for asking for help.  Luckily my friends were the type to chide me that learning to ask for help was a very loving thing, and that they were very glad to be of help to me.  That relieved my mind, but still I was scared.  Scared that this would carry on and I would have to continue to ask for help.  Thankfully, that didn’t happen, around one week into the new year I started feeling a lot better.  Still feeling very tired, exhausted & drained, but I could now walk the 100 metres round the corner to the park with Goldie without it being an enormous deal.  Poor Goldie, so loving & kind didn’t once make a fuss, whine or moan that she was only getting out 5 mins at a time.  In fact, when my strength did start to come back & I was able to walk a bit further, to a park with a bench when I sat down she would simply sit down at my feet.  I shooed her away to play, but she’d come straight back, within a few seconds.  Maybe she knew that I was ill.

And now, here I am, back to “functionality” of sorts.  I can do my groceries without feeling like I’m dying on good days.  And, like the other night I can go out to events & catch up with friends.  I have to sit down when I’m talking to them, and I explain briefly, that I’m not being rude.  And that’s ok, I can manage that.  But the next day, I’m wiped out, can barely think, let alone move.  No washing up gets done that day, and the gentle yoga I’d started back religiously doing each day barely got done.  My body was stiff & tired, so each pose of my routine I did a maximum of 30 secs.  I’m proud of myself, that I did it.  That I recorded how my body felt, that I modified my goal appropriately.

I’ve been referred to CBT (Cognitive Behavioural Therapy) at the Fatigue clinic in the Royal Free, I started my appointments in between Christmas and New Year.  My homework was to record my activities each day, along with the level of anxiety levels I felt.  I’d identified that anxiety was at a constant low level, and that even when resting in bed 90% of the time my muscles were actually tense.  I’d also realised that the only time in my life I’d ever felt 100% relaxed was when I was ill.  Being ill somehow gave me permission to relax. 


I'm becoming aware more & more of my body, the severity of my symptoms & where my activities & my emotional / mental state, the aim is to record everything & analyze the data retrospectively to see if there is a correlation.


I've developed quite a good spreadsheet to track the information, and I'm doing it on an hourly basis.  Merely doing it has created increasing awareness & connection for me with my body.