You look really well.

049This being ME/CFS awareness week I want to make a small contribution to the many blogs being posted.

So many people over the last couple of years have greeted me with the words “You look really well”. If only I felt as well as I apparently look! People, I assume, think that I will appreciate being told that I look well. Umm, no, not really. That probably makes me sound very ungrateful, I apologise if that is the case. Saying “You look really well” actually makes me feel under pressure to perform as if I am feeling as well as I look. I would far more appreciate them saying “I am so pleased to see you up & about”. You see, “You look really well” tends to give the impression that I am feeling better, on the mend so to speak. It is true that on days when I am out & about I am feeling better than on those days when I struggle to get out of my pj’s. ME for me however, is still a daily battle. I have to conserve my energy in order to get up, out & about & meet people. Often, by the time I get to meet up with people I have already used up most of my battery power. My leg is not in plaster but getting from A to B is still as difficult to achieve as if it were. I am guessing that were I in a plaster cast I would generate more understanding? What people don’t see is that before I meet up with people or go to the shops or theatre I have to lead a very quiet life for a few days beforehand in order to build up as much power in my battery as possible.  Afterwards my battery is so drained & I am so exhausted that sleep is beyond me, being overtired sends my mind in to overdrive. It takes me several days to get back to what is a relatively good place for my ME.

Please, people, when you meet up with me & others who feel the same as me & are battling an INVISIBLE illness think before you say ‘You look really well’. Instead, show your appreciation for the fact that we have managed to get up, out & about by just saying how lovely it is to see us.

It’s been too long…..

….in fact 19 months since I was last able to blog about my ME. I apologise for the gap but I simply haven’t had the required energy to attempt to post before today.

So much has happened that I really don’t know where to start with an update but I will start with today & hopefully fill in the gaps at some point in the future, I make no promises though, I am weary. Today I am off to the ME clinic. I see the O.T., a lovely lady, approx. every 6 months. In April, when we last met, she suggested that I make some time in my ME for me by introducing a relaxing treat. I decided to have a manicure/pedicure – it turned out to be a great choice – relaxing & uplifting with the results there for all to see & to remind me that I am still me. I have continued to indulge myself each month. It’s not cheap but what therapies are? It makes me feel a little bit special so is well worth it.

I will be updating the OT with my summer of stomach pain, which meant regular blood tests, an internal examination & an ultrasound scan on my abdomen & pelvis. Scans revealed an abnormal bulge on my left kidney, nothing nasty but enough to cause sharp pains when I move in such a way that causes the bulge to be pressed against my ribcage. Decision – best left well alone, two kidneys are better than one, lets face it, major surgery is not something to undertake unless really necessary. For the general dragging stomach pain & bloating I have been prescribed anti-spasmodic meds – alverine – to hopefully provide some relief. I am only a few days in to treatment & haven’t noticed any benefits yet. I am also taking note of what I eat & drink but can find no link between that & the discomfort. I remain optimistic.

Ten things not to say to a depressed person

I have personal experience of depression. This blog ticks all the boxes of how people can react to mental illness.

purplepersuasion

Depression is a very common illness.  The World Health Organization estimates that between 5 and 10% of us are, at any given time, suffering from depression which meets the clinical criteria for a mental illness.  Over a person’s life-time, their risk of experiencing clinical depression is 10-20% in women and girls, and slightly less in males.  Yet despite the fact that depression is so widespread, it is apparently still a very misunderstood illness.  That’s the only conclusion I can draw from some of the insensitive, crass and sometimes downright bizarre things people have said to me about my depression over the years.  Do any of these unhelpful comments ring any bells with you?

1) “You don’t need to be depressed!  Just rent a funny movie. Or go and get yourself a massage.” (One of my university lecturers)

The kind of person who says this is lucky.  They have never experienced…

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