This 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.
….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.
‘It was two years before Holly Buckley’s ME was taken seriously. Now 16, she writes a letter to the illness that is thwarting her dreams’. ~ Holly’s story featured in The Daily Telegraph on 8th May, 2014.
If you have or indeed know somebody who has ME/CFS please take a moment to click on this link to raise awareness of the illness.