So what do you do when things aren’t going so well? Yep, like there’s a viable choice, you hang on in there.
You may notice there’s been a gap in my blogging, well, you guessed it, I’ve been just hanging in there.
Although I have Secondary Progressive MS it still rides the rollercoaster that Relapsing Remitting did but the ‘well’ bits are not so damned well!
When I had RRMS, pre-menopause, I used to say that after each period of unwell-ness (I hadn’t been diagnosed so it was a mystery still) I seemed to have to give up one of my beloved sports/activities. In my 20s I gave up horse-riding and cut down on my weekly tennis matches, daily long cycles, etc. You get the picture. By the time I’d reached menopause and the jump to secondary progressive MS I’d given up all sports, cycling, dancing, etc and cut down on swimming. Walking was becoming increasing difficult. I walked with crutches, actually walking poles to begin with as I thought it was my degenerative spinal discs needing sorting…BUT…I was then diagnosed with SPMS and the Orthopedic Surgeon, who I’d hoped would recommend an op to hold my back in place, started to blame everything on the MS. Angry? Oh yessssss…hissingly mad….BUT…have I ever challenged that? No, I haven’t actually. The SPMS, I now realise, has kept me more than busy just dealing with it. Symptoms and lack of energy were coming thick and fast. Now, nearly 8 years after diagnosis, I have a very apt T-shirt message that says “I’m up and dressed, what more do you want?!” Dressing is no longer a daily occurance particularly when I’m just hanging in there. <BIG SIGH>
Ok, my waffling takes on a life of it’s own when I’m extra tired so I shall shut up now.
A question to anyone who reads this (I know there aren’t many…or any… of you) is:
How are yer relapses? Let’s share our experiences, it may help someone. X
I have always been a fiercely independent person. As a toddler I, apparently, slapped my mum’s hand off my cardigan buttons…..I COULD DO THEM MYSELF! (ha, she was probably in a rush and wanted to be quicker. lol) and throughout life I’ve always done most things for myself. I always helped those less able, too. I never made a fuss about it, not wanting thanks, it just made sense for me to do something that I could do easily, with little effort, instead of them struggling…unless they preferred to struggle.
Hmmm. I thought I’d be like that but I’m glad I’m not. By being so we deprive someone the glow of helping and a brief but nice interaction but, more than that, we deprive ourselves of the ability to do something more important because we’ve used too much of our precious energy to be stubborn. Makes no sense, does it? So I smile, even when it’s pissing me off (I miss being able to do it etc), I also ask for help when I need it. Where’s the sense in NOT doing? I know people who pride themselves in NOT asking for help, ever, but then end up in bad situations or laid up. It’s not big and it’s not clever. I’m sure some milk it but I don’t know any.
Bob, my partner, knows when to back off but will also help where necessary without judgement or moans. Yes, I have a gem….or, some would say, I’ve trained him well…mwahahahaha
I have, without tugging forelock or grovelling, an ATTITUDE OF GRATITUDE…for which I am, of course, grateful
Poor dexterity versus make-up…..hmmmm, what d’ya reckon?
I avoid most make-up nowadays as my dexterity is so poor that I’d probably have my eye out and lippy all up my cheek! Lip gloss, face cream and purple highlights in hair (yet to be attempted!) will have to do. My last attempt at make-up took ages and lots of wiping and re-applying only to wipe it all over my face because I forgot I had it on and I rubbed my eye! D’oh!
I’m thinking of having my eyelashes tinted. I did it years ago for a holiday but can’t remember what it was like. To be honest, I’m very much a take-it-or-leave-it kinda lass….always have been, it really comes in useful now…so I’m really not bothered but since a friend mentioned it I’ve been giving it some thought.
Yeah, yeah, yeah, so I’m not ok. Yesterday I stayed in my nightie all day ~ the phrase ‘wading through treacle” comes to mind. Today I planned to be up, dressed and busy-ish….instead I went to bed at 3am, knackered in morning so got up at noon feeling shot to bits. Still in dressing gown…BUT…I’m smiling. Why? Because following some lush, but rare nowadays, meditation last night I calmly ‘popped’ one of my ear-ring piercings that’d long since sealed over through lack of use. The other one was still open so just the one needed attention. I am now wearing ear-rings and grinning like the proverbial Cheshire Cat!
My dexterity is poor nowadays so previous attempts at the piercing-pop had involved me stabbing the earlobe! Not good. Now, because of said crap dexterity I have a plan……. I shall wear silver, my fave and a natural antiseptic (look it up on Ecosia ~ https://www.ecosia.org ~ owned by Google but they plant a tree for every 45 searches you do), I digress as usual (!) I shall wear silver sleepers with half a magnetic clasp on each. They are the clasps you can buy to put on necklaces. I intend to attach the other halves to all my pairs of ear-rings so I can just aim them towards the sleepers and ‘SNAP’ they’ll meet the other magnet half and I can wear all my old faves again! I just need to get the magnetic clasps into place…this may take a while…and a few choice words…y’know the ones. lol
Do you wear jewellery? If so do you have any tips to aid a now-non-dexterous-bint and others? All advice gratefully received… I thank you
I went to visit family (long overdue) for a couple of days. Now ‘paying for it’ for a few more 😦
It was lovely to catch up. I hadn’t seen my old mum for over 2 years!! It’s never been anywhere near that long before. We talk on talk on the phone regularly though.
My niece has 4 children and I now remind myself of my own aunties and uncles when I was a kid “Ooh, haven’t you grown! I remember when…blah..blah..blah!” lol
I was so knackered afterwards. Worth it though.
One word I keep thinking of, that my Dad used to use a lot, is “Kidology”…. I’ve been using it to pretend I’m ok while we were away. Like psychology but with more pretence! I’m sure you know what I mean. x
This, when I’ve learned the ins and outs of WordPress (yeah, I’m impatient, I’m sure that cart CAN be PUSHED by the horse. hehehe) shall be my blog. Well we all need something to keep us out of mischief…
Now, I haven’t told you what I intend to rant…er…I mean write about, have I? Ok, here’s the gen. I have secondary progressive multiple sclerosis. Bummer, huh?! Yup. I didn’t know until relapsing remitting turned into that, though, during that wonderfully fun time in a woman’s life (oh irony!) my menopause.
As you can see, I’ll talk about anything. Shit, none of us get out of this alive so I ain’t ‘precious’ about my topics. Say what I mean and mean what I say. This one will be about how I deal with infirmity and the pain (oooh, the pain IS a pain!) and that debilitating monster, fatigue…..zzzzzzz….what? Who? Where? Oh yes, I remember (cheer from crowd. lol) this blog is to be called by a ‘technique’ I engage to deal with all of the above. I call it….
A scream of rage
risen from my ribcage
emits from my mouth.
Fustration and despair overcome me
Tears of anger
tell of eternal danger
from where, who knows?
Worthlessness overcomes me
replace rage over years
kept to myself
Acceptance looks defeatest…but
it lets you breath
deeply, at last
A necessary process. It helps
A smile from my lips
After the main event
(or “I’m a funny age y’know”)
Is it hot in here or is it just me?
And where’s the loo, I don’t half need a pee
I know it’s not very long since I’ve been
It’s one of those days, “for England” I’m peeing!
I’m a funny age y’know
Have I just been insulted, it felt like I was?
I used to dress like that but I don’t now because..
Oh, pass me my flatties, my feet have got fat
And I know it’s a wedding but I can’t wear that hat
I’m having a hot one y’know
Chocolate sponge for pud, oh yumm, I’ll have four
And God help the waiter that won’t let me, for sure
I’m “assertive”, not rude, but I’ll tell him what’s what
If he won’t bring me CHOCOLATE if I ask…or not
I’ve got cravings today y’know
The bride looks just lovely, reminds me of me
When I waltzed with my father, I was so carefree
Please pass me that napkin, I can’t stop these tears
I don’t know why I’m crying, for the loss of those years?
I can be a bit weepy y’know
My little niece comes to me and we both share a laugh
My son wants advice on why he should bath
Cousin Geoffrey is here and he’s bending my ear
My ‘internal magnet’ brings folk all the year
I’m a right ‘mother hen’ y’know
I’m still young at heart and as fit as a flea
Apart from hot flushes and needing to pee
And, of course, the odd mood change and love of sweet things
Oh here come the couple to show off their rings
My approval’s still wanted y’know
It’s a pretty good age if it’s life you embrace
And you don’t have to look far and you’ll find a trace
Of the young woman, and child, that I once surely was
That makes me the mad ol’ bat I am now because…
When you’ve got letters after your name that’s sometimes all people see
Some wear them like badges to define themselves. But that’s not for me
This is who I am. My big heart, my smile, my love
Not some label, description of an outside thing, given from above
For forms I’m asked is it Mrs, Miss, Ms? I have to say the latter
But I’d rather you use my first name as the label doesn’t matter
Twice married, twice divorced what title would you give?
Apart from “fussy” I’d prefer a description of the way I live
I love the great outdoors, wildlife, photography, swimming, dogs
For me my life isn’t something contrived or written for others in blogs
I grab it by the short ‘n’ curlies, give a shake and see what falls
Life’s expansive, fun, a challenge, whatever. It’s not contained within 4 walls
That’s why I refuse to wear the label endowed upon me by others
Or live my life as part of a club, a ‘merry band of brothers’
Although my title would be balanced by those suffix letters that is
I refuse to live under an invisible cloud of gloom that is MS