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I'm worried...

I’m worried folks, I seem to be monopolising our forum I must be feeling better.

Just checked my diary/calendar it’s the anniversary of my diagnose 2007. That was such a shock to get someone to listen to me rather than ‘there seems to be a lot of things wrong with you’. This Consultant just knew and MS wasn’t even her speciality, I wasn’t going mad.

Has it progressed more than I thought it would? In this year 2015 I have to say yes. Sorry guys but sometimes there isn’t a sugar coating, I am still me but slower, wobble more on the brighter side I make a lot of people smile at my jokes. People are kind/infuriating etc at time.

I have you, my gang. Much and hugs M x

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It is hard looking back M.

I sometimes wish I could see the neuro who dx me with ‘benign PPMS’ in 2009 and say ‘Look at me now’!!!

Benign my a r s e!!!

I guess it’s the nature of the beast … BUT you are still you… and yes you have the gang!

Ok, now you’ve looked back M… press that button that says ‘Jump to now’ (my tv does actually have a button that says that!)

Stay in the moment. The past is gone and the future hasn’t happened yet. Stay in the now.

Do you ever get Nutella? I’ve started getting that recently for when I can’t live another moment without chocolate. Particularly nice on cream crackers… and sometimes have to have a teaspoonful straight from the jar.

Thinking of you… love and hugs…

Pat xx

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M & Pat,

Love the Nutella trick, I have it with Pan de Leche (little milk rolls) or croissant. At my first Neuro apt. she told me to try and increase my body fat, so hurrah, cream, milk and chocolate whenever I fancy it.

Seriously, at my last Neuro apt. with so many changes this year, a fasting blood test, CT and MRI were done, waited four months, and heard nothing, not until my lovely MS nurse, Lisa came last week, did I discover that have progressed to SPMS - thank goodness at least one of the team I rely on let me know what’s going on.

Take care - lots of hugs - Chin up, shoulders back, tits out !!!

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Cheers guys, life can be a bitch but we get by. Chocolate helps and coffee! Looking backwards when your balance ‘sucks’ is down right dangerous so ‘keep calm and carry on’. and hugs M x

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Hello M.

The gang is good. Rant away. We can all relate to it. Even though we may deteriorate at different rates, we all have those moments when we want to scream and shout. I think it’s important to do that to an informed audience. (Us!).

It helps.

Best wishes, Steve.

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Totally get you, I’m 2.5 years since diagnosis and now believe I’ve had MS for about 14 years (tho maybe 20+ ???). lso diagnosed with PPMS but finally after much hassle, on a DMD. But I have lost virtually all the independence I used to have. I keep hoping things will just level off instead of getting worse.

Yes, this gang always helps at least emotionally

Sonia x

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Yes, hindsight is a wonderful thing or a complete burden! I was diagnosed only last summer but I believe I have had MS since 1990. That was my first attack of optic neuritis when I lost the sight in my left eye for five weeks.

I seemed to carry on quite happily until about ten years ago when my balance started to deteriorate and the distances I could walk gradually shortened. My poor balance was attributed to a chronic ear infection which only cleared up after a major ear operation. My balance and coordination worsened and two MRI scans later, in 2010 and 2014, I was diagnosed with PPMS.

Now I can only walk about 50 yards with a stick and use my scooter for longer journeys. It has progressed a lot quicker than I had expected. Hey ho. Still, my brain works and I enjoy reading, music and the arts. At the moment I feel that I could survive with physical impairments as long as I retained cognitive functions, but then I am 61 and not hankering to climb Everest.

I have become a regular reader of the forum and an infrequent contributor. I do gain a lot of comfort and reassurance from your messages.

Alun

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Nice to see you on here Alun!

Always feel free to post on here… no pressure though… only when you feel like it.

Pat xx

Good day to you all, I have at various times, tried to measure my rate of deterioration, without actually drawing a graph so to speak, but it is bloody terrifying and so do as suggested and live in now…but have caught myself recently considering the future and when??? things will go. I have always tried not to do this, but a few tears have been shed and a little gloom appears…

but so far so good today, I am coping, must think about my next snack xx

Hello Snow Leopard

I laughed out loud at your comment about Nutella

Recently I bought some organic, vegan Nutella from the health food shop, its delicous!

when I am having one of those ‘moments’ I can feel instantly better by dipping the teaspoon in the jar

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Oooh organic vegan Nutella… I’ll look out for that!

I heard that Nutella was invented in Italy just after the war. So many children were undernourished that they came up with a spread that included nuts and was high in protein.

SO as far as I’m concerned Nutella is really good for you!!!

Thanks Whiteowl,

Pat xx

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I’ve heard it’s totally free of calories too!!

Nina xx

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That’s my kind of ‘goodness’ x

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I like your thinking winklaugh

Sonia xx