tag:blogger.com,1999:blog-74744131099155390882023-11-15T10:23:29.747-08:00Mother in law's blogmotherinlawhttp://www.blogger.com/profile/06953795991444498629noreply@blogger.comBlogger15125tag:blogger.com,1999:blog-7474413109915539088.post-46297864519268436562019-10-18T11:58:00.001-07:002019-10-18T11:58:18.397-07:00Ah, so here I am!I lost access to this blog in my ME fog.<br />Hopefully I have secured access, and can start to post again a little.<br />It's been interesting to read back, and see the progress I have made, and yet many things that stay the same.<br />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.<br />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!motherinlawhttp://www.blogger.com/profile/06953795991444498629noreply@blogger.com0tag:blogger.com,1999:blog-7474413109915539088.post-56075396407309494492017-10-14T10:13:00.000-07:002017-10-14T10:13:05.263-07:00Why I detest the word 'better''Hello,' they say, 'Are you better?'<br />
Better.<br />
What do they mean?<br />
Am I not quite as ill as I was last time I saw them, or am I, (drumroll) cured?<br />
What the hell do they mean, and how on earth can I answer them without coming across as either whinging, pernickety or downright rude?<br />
I usually try to mumble something like 'Oh, not too bad today, thanks, how are you?'<br />
Better! Hmph!<br />
... exit, grumbling!motherinlawhttp://www.blogger.com/profile/06953795991444498629noreply@blogger.com0tag:blogger.com,1999:blog-7474413109915539088.post-35193359383992768762016-05-29T16:05:00.000-07:002016-05-29T16:05:47.042-07:00Well, that was stupid of me.I wanted to get something from the airing cupboard - simple, you'd think.<br />
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.<br />
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.<br />
Gah!motherinlawhttp://www.blogger.com/profile/06953795991444498629noreply@blogger.com0tag:blogger.com,1999:blog-7474413109915539088.post-62882342876612032442016-05-21T16:13:00.000-07:002016-05-21T16:20:52.554-07:00Othering, and queueing for the loo.We visited the FitzWilliam museum in Cambridge recently to visit a special exhibition. (wonderful place - brilliant staff).<br />
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.<br />
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.<br />
No. It's not right. (Also, selfishly, it could cause longer queues - not nice when IBS strikes!)motherinlawhttp://www.blogger.com/profile/06953795991444498629noreply@blogger.com0tag:blogger.com,1999:blog-7474413109915539088.post-2803629711551287672016-04-26T15:25:00.000-07:002016-04-30T14:34:30.621-07:00Don'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.<br />
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.<br />
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.<br />
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.<br />
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.<br />
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.<br />
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...<br />
NO!!!<br />
I have to admit, I lost it. Totally and completely.<br />
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. <br />
I stomped out, shaking, my heart banging; the adrenaline and anger overriding the need to move sensibly. <br />
Did I react badly? Yes.<br />
Did I overreact? I don't think so.<br />
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.<br />
<br />
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.<br />
<br />
Nobody gets to roll their eyes at ME.<br />
<br />
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. motherinlawhttp://www.blogger.com/profile/06953795991444498629noreply@blogger.com2tag:blogger.com,1999:blog-7474413109915539088.post-79459199310637411312016-02-10T17:55:00.001-08:002016-04-30T14:30:47.566-07:00Suicide and MEA 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.<br />
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.<br />
<br />
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.<br />
<br />
However, there is no compassion or understanding for those with ME, who could face years, even decades, of similar deterioration, weakening and pain.<br />
<br />
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.motherinlawhttp://www.blogger.com/profile/06953795991444498629noreply@blogger.com0tag:blogger.com,1999:blog-7474413109915539088.post-54096505613350429102016-02-10T04:07:00.002-08:002016-04-30T14:31:32.479-07:00DIY - The real me and MEYesterday I painted the bathroom ceiling! It's only a tiny room, like most modern bathrooms.<br />
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 <i>properly</i> tired - rather than simply exhausted. I have a great sense of satisfaction in my achievement; I felt like a real person again.<br />
Today is a sofa day, so that tomorrow hopefully doesn't confine me in under the covers.<br />
Even though I have ME - the real me is still in here! motherinlawhttp://www.blogger.com/profile/06953795991444498629noreply@blogger.com0tag:blogger.com,1999:blog-7474413109915539088.post-15107684210012690232016-02-04T17:37:00.000-08:002016-02-04T17:38:08.714-08:00DIY - M.E style!I'm so proud of myself - I managed some DIY!<br />
Anyone who knows me in real life will already be bored to tears by this year's continuing<br />
Saga Of The Plumbing,<br />
Chapter 1 - The Leaky Bath<br />
Chapter 2 - The Leaky Tap<br />
Chapter 3 - The Leaky Joint<br />
Chapter 4 - The Leaky Loo<br />
Chapter 5 - The Broken Tile <br />
With hit spinoff - The Washing Machine That Tripped The Fusebox<br />
<br />
The Starring Role was taken by DH, who has done all the plumbing work himself, with Special Guest Appearance of DD's wonderful DP, who skillfully applied the new bath sealant.<br />
<br />
My cameo role in all of this was mainly searching for taps, sealant, etc online. However, this week my role was widened to include fitting 2 replacement ceramic wall tiles. In my past life I have tiled a splashback, a shower area, and all of my kitchen. This time it took me 10 minutes to figure out how to use the simpler of my 2 tile cutters, but I managed it - I fitted the two small tiles in place!<br />
<br />
My next task was to do a tiny bit of painting. This is the person who used to be able to apply two full coats to any room in the house in a day. It took me two separate sessions yesterday to do the skirting board and door frame in a tiny bathroom - but I did it! <br />
<br />
Today has mainly been spent in bed, curled up in pain, with a splitting headache and my limbs on fire. However, it was worth it, as the headache has now gone - but the work is still there, done, for me to glimpse a little of the me before ME.<br />
<br />
<br />
Rest before - do a bit - rest afterwards.motherinlawhttp://www.blogger.com/profile/06953795991444498629noreply@blogger.com0tag:blogger.com,1999:blog-7474413109915539088.post-24211599487918530272015-09-25T16:57:00.000-07:002015-09-25T16:58:58.230-07:00An Outing in the City!<!--[if gte mso 9]><xml>
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<div class="MsoNormal">
I longed to see the local museum's display to mark the
centenary of the WI, as I am a founder member of our village branch. A lot
easier wished for than done! I haven't been able to visit the city on my own
for three years, since I suddenly crashed with ME.</div>
<div class="MsoNormal">
Dear DH came up with a solution. </div>
<div class="MsoNormal">
I rested well the day before. The day of the Outing, I had a
lie in, then rose, washed, dressed, then rested quietly on the bed. I came
downstairs, ate breakfast, then rested quietly on the sofa for an hour or so. I
sat quietly in the car - no music - as he drove me the fifteen miles to the city, dropping me at
the door of the museum. We'd arranged that I would phone him if I needed him,
otherwise we'd meet a few hundred yards up the road at a certain time. <br />
He drove
off to park, and there I was, on my own in the city! With my walking stick to
aid my balance, I entered the museum. There were chairs in the room featuring
the WI , which I knew would be on the ground floor. I sat, reading the
displays, marvelling at some of the intricate needlework, fascinated by the
history of the organisation. Did<span style="mso-spacerun: yes;"> </span>you
know that the WI campaigned for a ban on smoking in public as early as 1964?
There were WI members on hand to chat, which was a treat. They showed me the
lacemaking, they were working on, with decorated, beaded bobbins intricately moving in delicate
dances across the cushions. <br />
Eventually I tore myself away. I sat outside in the
sunshine, people watching - a rare treat! I walked a few yards up the main
street, popped into a shop for a sandwich and water, sitting on another bench
to eat and drink, revelling in the freedom. I even ventured into a charity shop,
spotting a vase identical to the one smashed last week in an attack of
clumsiness. I found another seat for another rest, then phoned DH, who drove to
collect me. I was very tired, but very happy.</div>
<div class="MsoNormal">
I rested the next day, not feeling too bad; the following
day was bad, the day after that was a bit iffy but a little better. Tomorrow I
should be back to my 'normal.' </div>
<div class="MsoNormal">
It was all worth it - I'd had an Outing!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<span style="font-family: "Times New Roman"; font-size: 12.0pt; mso-ansi-language: EN-GB; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;">My Outing would seem trivial to most people - a lazy
day of doing hardly anything. That day I managed much more than usual, which is many
times more than a lot of people with ME, who cannot even get out of bed. </span>motherinlawhttp://www.blogger.com/profile/06953795991444498629noreply@blogger.com0tag:blogger.com,1999:blog-7474413109915539088.post-85754242692634052982015-08-25T18:15:00.003-07:002015-09-25T16:58:32.613-07:00I hear the black dog growlingHe is sniffing at my heels, winding round my legs, trying to trip me. He wants me to fall headlong into the deepest darkest pit, but I will not go. This dismal rain and the dark skies keep me indoors, out of the sunshine which makes him slink away, this creature of shadows. He scratches at the door with every squall of rain. He is in the drumming of the rain on the windows, the drip, drip from the gutters and the tossing of the trees in the wind.<br />
The thunder cracks, the lightning flashes, the air clears, and I know I can break free.<br />
I will not go into the pit.<br />
Today.motherinlawhttp://www.blogger.com/profile/06953795991444498629noreply@blogger.com0tag:blogger.com,1999:blog-7474413109915539088.post-23984582126817623542015-08-07T16:02:00.002-07:002016-04-30T14:32:15.111-07:00Surviving the storm<!--[if gte mso 9]><xml>
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<div class="MsoNormal">
The first moments of consciousness spark in my brain,
searing across the peaceful, silent darkness of oblivion. No! I don't want to
wake up! I try to sink back down, down into precious, unfeeling sleep.
Relentlessly, my brain cascades itself awake, pulling me higher and higher,
towards blinding internal illumination behind closed eyes. The pain swirls over
and around and through me, like a tempest at sea. I think that if only I could
break free, I could ride out that storm on the surface, rolling with it. However,
I am chained; chained to the depths, my body a marker buoy in the maelstrom of
pain. I must lie here, buffeted by overwhelming sensations that crash my waking
thoughts. My skin is on fire, my joints crushed by their very existence. From
experience, I trust my brain will dampen down the input, will mute the silent
screams, but I also know that for those with the most severe ME, this is how
they will feel all day and every day. </div>
<div class="MsoNormal">
My husband hears me move; he appears with a glass of water
to help me swallow my painkillers and assorted hopeful supplements - my first
action of every day. He speaks to me, but I can only reply with 'mm'. He hasn't
realised that today is starting so badly. He pulls open the curtains, heavily
lined to keep out even the tiniest shafts of light that blaze at the edges of
the blackout blind. As I turn my face away from the window, I know that I am
lucky - my eyes will adjust to the light of day, but I think of those who must
stay in darkness. I can feel him looking at me; assessing. He curls up behind
me, laying a hand on the back of my neck - for me, a soothing gesture I can use
to focus my brain and help to dissipate the pain, while knowing that for many
that gentle touch would bring agony.</div>
<div class="MsoNormal">
I lie there, breathing.</div>
<span style="font-family: "times new roman"; font-size: 12.0pt;">The storm abates; I will survive today.</span>motherinlawhttp://www.blogger.com/profile/06953795991444498629noreply@blogger.com0tag:blogger.com,1999:blog-7474413109915539088.post-73401418817537314492015-08-05T19:09:00.001-07:002016-04-30T14:32:55.698-07:00My elephant is not a unicorn.<!--[if gte mso 9]><xml>
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<div class="MsoNormal">
My elephant is not a unicorn.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I have this elephant that has chained itself to me. I did not
choose him, or welcome him to my life; I woke up one morning and found him
there, crushing my mind and body into a silent scream. He saps all my energy; trumpets in my head every waking minute, so I cannot concentrate or think. He is
so heavy that I cannot lift or carry anything else. I have to drag him
everywhere behind me, so can hardly move. He keeps me awake at night, yet tires
me in the daytime. My mind and body ache constantly from his ceaseless demands.
If I force myself to do anything, his revenge is merciless; he imprisons me,
motionless, for days, crushed under his unforgiving weight. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Most other people<span style="mso-spacerun: yes;">
</span>can't see him, so they tell me he is a unicorn. He's just a unicorn,
they say - and unicorns don't exist; ignore him, they say, and he'll go away.
They say I'm too lazy to get rid of him, that I enjoy his company.<span style="mso-spacerun: yes;"> </span>They made me try to run away from him - a
little harder, a little further every day. He caught me, dragged me back, and
kept me prisoner for many weeks.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
A few people say he's a black dog I brought home one day,
but I know my beast - and he certainly is a totally different creature,
although he does try to let the black dog in, sometimes - but he's not
coming into my house. Even if he did, black dogs can be dealt with - people
know they exist.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The only people who can see my elephant are those also attached to one. They can just hear him in my stumbling speech, see him as a sag
in my shoulders, the pain and lack of comprehension in my eyes, and the false
brightness of my smile. They know the frustration of evading those who cry
'Unicorn!' on top of dealing with the elephant itself. </div>
<div class="MsoNormal">
<br /></div>
<span style="font-family: "times new roman"; font-size: 12.0pt;">My elephant is not a unicorn.</span><br />
<span style="font-family: "times new roman"; font-size: 12.0pt;">My elephant is M.E.</span>motherinlawhttp://www.blogger.com/profile/06953795991444498629noreply@blogger.com0tag:blogger.com,1999:blog-7474413109915539088.post-4169753578659517712015-08-02T16:16:00.000-07:002016-02-10T04:19:38.088-08:00Grit your teeth and smileI have spent many years being diagnosed with depression, rather than with what actually ails me. <br />
I was told my stomach problems were because I was depressed. My suggestion of a dietary intolerance was dismissed, until I was sent to a specialist, as things had got really bad. Guess what! He diagnosed me with milk intolerance. Turns out that milk gives me an upset stomach, aching joints, sinus problems, migraines and - yes - it makes me depressed.<br />
Roll on the years. I fall ill with mystery aches, brainfog, swollen glands, exhaustion, etc etc; a few years down the line; a diagnosis of ME.<br />
However, it is an invisible illness.<br />
I have to smile, be bright, cheerful and positive, otherwise I am being 'miserable'.<br />
Sometimes, just sometimes, I want to let go.<br />
I want to rant and howl and cry for the pain I am in, and the life I cannot live.<br />
But I must grit my teeth, and smile.motherinlawhttp://www.blogger.com/profile/06953795991444498629noreply@blogger.com0tag:blogger.com,1999:blog-7474413109915539088.post-36365591731910583992015-07-30T12:54:00.002-07:002015-08-02T19:50:56.688-07:00Delete, Delete, DeleteI am now no longer a mother in law, so I have deleted all previous posts.<br />
Instead of a private place to witter about family, this will now be a public place to rant about M.E. and other random things that might cause me to put digit to keyboard.<br />
<br />motherinlawhttp://www.blogger.com/profile/06953795991444498629noreply@blogger.com0tag:blogger.com,1999:blog-7474413109915539088.post-21219231107904465342009-08-31T23:15:00.000-07:002012-09-07T08:31:48.541-07:00Dramatis PersonaeMe - the dreaded Mother in Law<br />
DH - Himself - my dear (dratted, daft - dependant on behaviour and mood) husband, father of my offspring<br />
Daughter<br />
Son <br />
Assorted friends, incidental characters and petsmotherinlawhttp://www.blogger.com/profile/06953795991444498629noreply@blogger.com0