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hit the f@@@ it button

HI

Miss cup half full has dropped her glass …DX In June …was miss cup half full but still making frustratingly slow slow progress from relapse ( told suspected 's 2 years ago but did the head down arse up ostrich impression and cancelled 2 Neuro appointments …view being better not to know.( how much do j regret that approach now ) …ct scan and Neuro now say I have had this for at least 6 years ) …since DX grandad died …split with the bloke ( not as bad as it sounds as been having doubts ( me ) for last year so not a tragic event …but suffice to say " high Times and hols" not enough for me any more ! ) and still signed off work ( am workaholic who loves her job ) …and may well need to cconsider talking shares out in Tenna lady !

Lots to be thankful for …full sick pay , lots of support from kids ,family and friends , still have own hair and teeth and can usually laugh at fact I walk like a pissed crab in stilettos…but tonight I am angry and frustrated ( OK so a bottle of wine hasn’t,t t helped ! )

Waiting game is getting to me …so I can play …monopoly, trivial pursuit and cards againstt humanity but the waiting for …physio , 's Neuro ( to prescribe dmd) and urologist is not a game I want to play.( know we r so lucky to have nhs …but so frustrated by the wait ) …it’s taking so long to get over this relapse …I,m just 44 and want to be me again …

I, m so sorry to 'vent …life could be so much worse …but I,m angry and pissed off that I am not miss cup half full who always see,s the sunny side of life at the mo …I wanna be me …the gal that works hard , parties hard and laughs her way through life’s downs

I,.Sorry for the rant and as penance I will find something to now post on jasse,s happy thread ( yes May have been silent but have still been stalking…fab thread by the way jasse /)

Sorry once again for miss cup half empty rant …Thanks for listening …please tell me it’s normal to feel like this

Izzy xx

Izzy

been there - most of us have. There are still lots of small victories to be won.

there are always positives. They are just smaller. I will bump a thread I started – the happy thread.

read it and good luck.

jase

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Well, Hello Miss Glass half empty Izzy! :slight_smile:

I was told I had ms in May. Out of the blue and still reeling from the news, it made sense of my dodgy knee that kept “giving way” and the ongoing quest for an answer for almost 2 years. Xray knee, nothing. Physo, useless. Mri knee, nothing. “Pins/needles/numbness in foot since xmas”? “Ah, it must be your spine”. Mri spine, nothing. Three episodes of right side paralysis in a few days, A&E, physical testing and Mri brain…yes, two lesions and confirmed diagnosis by Neurologist. (Had it for some time apparently. I never asked how long. I’ll ask end of month at next appt.)

I thought I was doing okay with the dx. 55, got ms, so what? Big deal. Not going to change MY life. Just over two months later, I feel a little differently. Can’t walk very far or for very long. Love the pissed crab in stilettos image btw. Had a few occassions where I’ve sat down, helplessly and cried like a baby. I want to be me again. I want to do the Camino in Spain, I want to walk the lenght of my nearby beautiful beach, I want to chase my grandchildren into the sea, without the fear of falling over. Yesterday, during a sobbing session, OH told me to, just hold on and see how I get on with it, when I’ve been on the DMD’s for a while. I angrily replied, “I don’t want to get on with the f***ing thing at all!. I don’t want it! I want to be the old me again!”. So Izzy, I totally empathise with you. I think we’re all entitled to a rant now and again. We just best not make a habit of it.

Now, is that bottle half full or half empty?! x

I meant to add, the paralysis has gone while I was in hospital for 5 days. It’s only when walking, even for a short while, I end up dragging my leg and my inward turning foot. :frowning:

Thanks for the messages jasie …did post in your happy thread …best I could come up with tonight …but optimistic I,'ll come up with more over next few days / weeks :slight_smile:

Poppy , thanks …it’s strange how u cope fine initially Isn’t it… then boom it hits you… but you’re so right …it’s OK to wallow on a down day but then u must pick yourself up and be thankful for the good things you have …after every thunderstorm the sun always comes out …eventually !

Here,s hoping tomorrow is a cup half full day for us all :slight_smile: xxx

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Hi Izzy,

Sorry you’re having a downer at the moment. We all get them from time to time and long for the days of high heels, dancing, running and doing things others do, but remember you are you and this darn disease can’t take that away. I’ve had MS for more years than I care to remember but it has not been able to stop me laughing and it never will even when I’ve landed on my bottom. Keep your spirits up things will improve. Here’s a few (((((HUGS))))) for you to let you know you are not alone.

Janet

x

I don’t want you to think that my state of mind appeared over night - I’ve had MS over 20 years so I’ve had plenty of time to get to this point.

What I want to say is that you have to drag your mind away from that “old me” thinking. There is no old me just THIS me. Yes it might be crap but it is what it is. Put your energy into making today as good as it can be, find ways to still do things that you want to, albeit adapted or downsized.

Im not talking about a mythical “positive attitude” because that indicates that you should be happy happy all the time and is doomed to failure. What I am saying is put all the fight into getting the right benefits, getting aids that you need, being creative with how you do things, educating your nearest and dearest. A crying jag will leave you exhausted, finding you can still get to the pub if you do it on a scooter is exhilarating.

I personally find it very self destructive to be at war with MS. You don’t have to like it or make it your friend but to constantly rail against it by looking back to healthier days is to let time slip through your fingers. When I was first dx and didn’t know what was round the next bend I was terrified that in the future I would look back and see a diminished life. Well I am in that future now and I am very happy to say that on the whole I have no regrets.

Im SP now so the freight train is roaring down hill but I still have that feeling in the back of my mind that in 5 years time I don’t want to look back and wish that I had done x y or z when I still could. So my current energies are put into finding ways to do x y and z - just in case!

Jane

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I just wanted to add that I have just read an article in this months magazine “psychology and mantras” by Gus Alexiou that says everything I wanted to say but so much more eloquently!

You put it just fine jane and made perfect sense … , but thanks for sharing article details…, I,'ll have to have a read :slight_smile:

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Hello Izzy !!! How are yer ? So do you still have the Ju Ju Hounds ??? Too loud ? Is there such a thing ? What thread was that on ? Jasie’s happy thread ? A cracking read it was/is too ? M.s. vs foul mouthed rugby chick… being married with kids I now have no life, so I’m intrigued with single life and it’s…difficulty. :smiley: So I’m back I the land of Nelson now after mr sandman finally returned to my hotel room 2 1/2 hours later…still it gave me the chance to catch up. Hope you’re feeling betterer today… new glass and all… Take care of yourself Andy

HI Andy

Cup is filling up again …so all Good thanks …single.life is not that bad …didn,t live together so none of that awful separating of worldly goods / financial woes and on plus side get the bed to myself…(or would have if geriatric cat had taken upon himself to model x bloke and sprawl out on other side snoring ! ) …and can eat ice cream for dinner .Have also taught myself how to use sons spotlify account today ( am c@@@ with technology ) as revenge for this morning ( see happy thread )… so you r right no music is too loud and have take a trip down memory lane and have been playing culture club , UB40 , Prince ,pink Floyd , cash and John lennon full blast all afternoon ( can play what I like now )…miss the days of little ones though …hard work but they grow into Mickey taking "adults " far too quick ( see happy thread again)

Glad the sandman found you …eventually !

Izzy

Red, gold and green. :wink: Check out Train…

Glad to see you Know your culture club Andy…classic band …love train too … got bulletproof Picasso in collection ( plus lots I,m too shamed to mention. ) …don,t grow up so fast

There was a whole lot of shite went down on an native American res back in the seventies, a coupla of fbi agents were killed… ( val Kilmer film thunderheart based loosely on it)…I read a book on one summer listening to Train’s My Private Nation. Love that cd. Has my death song on it (When I look to the sky). Anyways, the book was about three inches thick, I saw it as a victory ! While I’m wading through the ‘Random shit’ file, the guy they sent down, Leonard Peltier, is still in prison, with no parole. Served longer than Mandela, but probably was more of a naughty boy…

Another cd to check out, The Mother Station - Brand New Bag. (Cute guitarist and boy, has the boys vocalist got a set of lungs.) Put the blame on me…

HI there Andy

Love a bit of random s@@@…can,t say I,m a big film watcher ( hense not knowingthe DVD player broke ages ago )…books on the other hand…can,t get enough of them …wasn’t, Peltier case highlighted by amnesty international few years back or am I imagining that ? Worth a read or was the victory due to persevering with it ? Like the song but here’s hoping not played in that context anytime soon …will check out the mother station in a bit …can feel a music / housework day coming on as no way I,m doing the planned walk to pool in this weather ( had to endure Darcy again instead ! ) …so much for August sunshine …

Hello Izzybell. Yep, Peltier was highlighted a while back. Just googled him. 40 years in prison now. Classed as a terrorist though… Victory in reading a three inch book ! It was a chore, but ‘glad’ I stuck with it. Introduced me to the word affidavit. … Made me sad and angry. Reading a lot around then - Bury my heart at wounded knee, Black Elk auto, Lame deer (and his sons book), and read Peltier’s book. Not comfortable reads. Neither wolf nor dog by Kent Nerburn was good too. Take care, Andy