Ah, so here I am!

I lost access to this blog in my ME fog.
Hopefully I have secured access, and can start to post again a little.
It's been interesting to read back, and see the progress I have made, and yet many things that stay the same.
I'm more careful with my energy, more likely to say no to things, and much more likely to ask for help. I don't think my available energy has increased, but I have become physically stronger, so it takes less energy to do things than it did a few years ago.
My blue parking badge has made a world of difference to me, as now I can drive places on my own, secure in the knowledge that I can park close by. A wheeled walker is also always with me. It gives me security that I can walk with less chance of tripping due to my sciatica and back injury, and also I always have a place to sit down! It took a huge effort to actually use it, as  I feel very self conscious, but it is so useful for distances of more than a few yards. I do still use the stick when I can, especially when going in and out of small shops, as it's so embarrassing to get stuck on a shop display!

Why I detest the word 'better'

'Hello,' they say, 'Are you better?'
Better.
What do they mean?
Am I not quite as ill as I was last time I saw them, or am I, (drumroll) cured?
What the hell do they mean, and how on earth can I answer them without coming across as either whinging, pernickety or downright rude?
I usually try to mumble something like 'Oh, not too bad today, thanks, how are you?'
Better! Hmph!
... exit, grumbling!

Well, that was stupid of me.

I wanted to get something from the airing cupboard - simple, you'd think.
Stupidly I decided not to disturb Himself, who was working out in the garden. 'All' I needed to do was take the little stepstool upstairs to reach the shelf. I carried it to the bottom of the stairs - no problem, then lifted it, stair by stair; pop the stool down, climb a step, lift and repeat. by the time I got to the top of the stairs I was drenched with sweat, and I was shaking so much I couldn't even operate the heart rate monitor until after I'd been flumped on the bed for several minutes.
All the careful resting and gentle pacing I've done over the past few weeks, all wrecked in 5 minutes of my own utter stupidity.
Gah!

Othering, and queueing for the loo.

We visited the FitzWilliam museum in Cambridge recently to visit a special exhibition. (wonderful place - brilliant staff).
As nature happens, I needed the loo. As is the norm, I pushed against the main door to the ladies, and it swung open. However, it was too stiff and heavy for me to pull open again myself, so I had to wait for someone else to let me out. (embarrassing)  And no, fire doors do NOT have to be like that; if they are hung and maintained properly, they can be opened with ease. Anyway, I decided I would use the loo for disabled people next time; those doors, although wider and to the same specification, are usually better balanced and maintained. It's also better hygiene to be able to wash your hands before needing to touch your walking stick handle. I avoid using the full access loo unless I really have to - greater need, and all that. (Why do they get called disabled toilets? To me a disabled loo is one that's out of action) Anyway.
A meal and a little wander round later, I needed the loo before leaving. As well as the wheelchair and nappy change symbols there was also notice on the door saying (paraphrasing) that people could use the toilet regardless of their gender identity. At first glance, this might have seemed accepting, then I realised it was, indeed, the opposite. Disabled people need the specific facilities offered - wide, light door, wheelchair turning circle,  high seat, accessible washbasin. Carers need nappy change facilities. Trans people? They just need to be allowed to get through the door that matches their gender identity, and pee in peace. This sort of false acceptance segregates them, othering them, refusing to accept who they are, trampling on them just that little bit more.
No. It's not right. (Also, selfishly, it could cause longer queues - not nice when IBS strikes!)

Don't roll your eyes at ME!

I had an appointment early today for a mammogram. I know they are important; we have breast cancer in the family, and friends have died from it. So, I was ready, had worked out what to say about needing to be treated carefully because of fibro, ME and my spinal injury.
Himself drove me practically to the steps of the mobile unit, then parked the car, and waited in it, as only patients are allowed inside the unit.
Walking stick in left hand, I used the rail on the right to help haul myself up the metal steps to the unit. OK, I was expecting this; however I wasn't expecting the handrail to be so loose it wobbled, pinching my hand between it and the side of the unit with every step.  I mentioned this to the two members of staff when I went in. No reaction. Never mind, no big deal.
After registering, I was told to do the usual - go into a cubicle, take top and bra off, put top back on. I declined, explaining that was too much unnecessary effort for me, doubling the taking off and putting on; I had dressed in T shirt, as I'm quicker with that than a blouse. They exchanged looks.
I was the only patient in the unit. The younger woman took me to the end room. I said that I needed to explain to her about my health, and that I had some specific needs. I said I have a spinal injury, and so cannot bend and lean in ways that most people can, so she'd need to work round that. Oh.
I then explained that I have Fibromyalgia and ME, so have problems with pain. I said that it was important that when I said 'enough' that she was to stop winding the plate down immediately. In the past I have suffered from an overenthusiastic radiographer carrying on tightening, to such an extent that I was left in pain for several days.
I got the eyeroll. No assurances, not even any platitudes. She just launched into telling me why, from their point of view it was so important to...
NO!!!
I have to admit, I lost it. Totally and completely.
I was so upset, and very, very angry. I had carefully worked out exactly what to say to explain what I needed, and why, and she didn't even acknowledge my conditions or my concerns. I then made it abundantly clear I did not trust her to treat me with the necessary care, and that with her attitude she wasn't fit to do the job.
I stomped out, shaking, my heart banging; the adrenaline and anger overriding the need to move sensibly.  
Did I react badly? Yes.
Did I overreact? I don't think so.
People who are so dismissive of vulnerable patients, even when we articulate our needs, are the reason so many of us end up physically worse, and so distrustful of clinics and hospitals. I am able to speak up for myself, and have the brass neck and short enough fuse to be fired into doing so.

Himself drove me home, hugged me, supplied me with copious amounts of tea, made sure I rested all day, and cooked supper. I still feel a bit wobbly. I will probably have a reaction to this in the next day or so. But hey ho.

Nobody gets to roll their eyes at ME.

I did phone the department, and made my views known, suggesting some department training in respect and consideration. I was listened to with interest, was given an apology, told that my complaint would be brought up at a meeting tomorrow, promised an alternative appointment, and that the handrail would be fixed. We can hope.

Suicide and ME

A new 'study' is showing that patients with CFS could be more likely to commit suicide than healthy people. The authors seem to start off saying that the study did not include enough people to show statistical significance. I have to wonder why they bothered, then if they weren't studying enough data.
They then go on to blame the patients, saying that the reason they committed suicide is because they wouldn't go for treatment for the mental illness they knew they didn't have.

If someone with cancer commits suicide, then there is compassion and understanding that the patient  has maybe a few weeks or months to live, is in extreme pain,and that they wish to escape their last few weeks, deteriorating, weakening, and in increasing agony.

However, there is no compassion or understanding for those with ME, who could face years, even decades, of similar deterioration, weakening and pain.

I hate going to bed at night. Not because I fear I might not wake up, but because I fear that I will, and know that each awakening brings a fresh morning of pain.

DIY - The real me and ME

Yesterday I painted the bathroom ceiling!  It's only a tiny room, like most modern bathrooms.
DH put the stepladder in place for me. I rested all morning, then worked my way across the ceiling, being careful not to stretch too far or move too fast. I moved the stepladder slowly, eased the massive tub of paint gently from one spot to another. I stopped twice for a cup of tea and a rest. I was glad when I'd finished, and quite tired, but properly tired  - rather than simply exhausted. I have a great sense of satisfaction in my achievement; I felt like a real person again.
Today is a sofa day, so that tomorrow hopefully doesn't confine me in under the covers.
Even though I have ME - the real me is still in here!