Last reply 5 months ago
two year anniversary retrospective

I have now had diagnosed MS for two years. At moments like these I like to look back at the journey and think about what has been good and bad.

So here goes:
The Good
– Had two beautiful children who’s smiles light up my life
– Quit a high stress job and joined a great organisation which is aligned with my family values
– Bought a new house
– Remained symptom free since diagnosis
– The realization that MS is more common than I thought – so many people know someone with the disease.

The bad
– Sympathetic do gooders who want to help but make me feel shitty
– The number of people who think the latest diet can cure MS
– Having ON and being blind
– The fact I can am now resigned to be near a Neurologist and a pharmacy with my medical script for the rest of my life (no more 14 month backpacking jaunts through South America although kids have stifled that anyway)
– The constant cloud of relapsing over my head and the russian roulette nature of RRMS (will I wake up tomorrow with facial paralysis or not)

I think the good outweighs the bad for now.

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mamawals
6 months ago

That’s a lot of good things to happen in two years!


stumbler
6 months ago

@cammo , life is full of ups and downs, goods and bads. The demands of life make different demands on our time and resources as we progress through life.

So, has anything really changed…………. πŸ˜•

That’s the philosophical side of me coming out. πŸ˜‰


grandma
6 months ago

Your children are always the most important beings. So moving house, being nearer the neurologist etc., are all good things but having more time for the chidren is the most important thing. They grow up so quickly, take it from a grandma, mine us 39 and my grandchild is 14 (she now has opinions!). She used to love to ride on nannys knee on the mobility scooter, skip a few years and the basket on the front became the reository for jumpers, water bottles etc when we were out walking the dogs, but giving your time is the moser important thing, the one thing that’s pretty much guaranteed with ms s that you will always be there, even if things get really bad and you can’t move around as much (like me) you are pretty much guaranteed to be in the same place (usually on the sofa) for telling what’s happened at school, to have secrets whispered to, to read, help with homework etc., make the most if it, it gives so fast.🀞😜😍


cammo
6 months ago

@mamawals It has been a busy two years to be sure.
@stumbler “has anything really changed”… I think the main thing is I am more active and energized to get things done. I don’t want to sit on the couch and watch TV while I can still walk… I don’t want to walk when I can still run. I want to make the most of what I have now as there is a chance it will be gone tomorrow.. Carpe diem and all that.
@grandma It does go very quickly… I blinked and all of a sudden my little girl is walking and giving me hi-fives.


potter
6 months ago

Cammo sounds like you are handling your diagnoses the best you can, but it sounds like to me you need to add a little clay to your diet. Potter


cammo
5 months ago

@potter Ha… unfortunately it is fire season down under now so wood firing is out of the question… need to wait another 4 months and cut more wood.
There is a backlog in the bisque kiln already.


dominics
5 months ago

@cammo – very well said.

At least I know that when I die I will be heavily indebted to the government πŸ˜‰

Pip pip,

Dominic


kitty369
5 months ago

What I lovely post, thanks for sharing with us, I am coming up to my Y2 anniversary of MS, Interesting to see a few familiar things, I have quit a high stress job and am about to move House.

Love your positive push and lust for life, keep real and enjoy your babies xxx


grandma
5 months ago

Totally agree, we need to grab any opportunity and go with it. With ms you should never stop making plans, you just have to tweek them occasionally. Am going to @zoeb meet in Shefgield on 3 rd Feb. Assume I will be ok. Am hoping for a lift from Manchester cos I can get a train easily from Stoke to Manchester, but if no-one offers, will be getting a train from Manchester to Sheffield. As I said, one should never stop making plans, don’t let kids, money, ms etc., stand in your wayπŸŽ‰πŸ₯‚πŸ˜


grandma
5 months ago

By the way, didn’t realise you were a fellow Potter. I live in Stoke-on-Trent which is called ‘the Potteries’ home of Wedgwood, Doulton, Royal Crown, Spode, Portmerion, etc., so there’s not much we don’t know!πŸ™πŸ»πŸ“―πŸ˜


vixen
5 months ago

Hello @cammo, it’s my 2 year anniversary too, yay! (Not) I also have beenfree from relapse according to my neuro, but every day there is something going on and symptoms vary. But,I am still working full time and am hoping to move too, so lots of positives. I agree about the diet comment, although the diet I am on gives me energy and keeps fatigue at bay. Counting blessings is an important part of dealing with our condition I believe, although this can be a challenge at times! Wishing you all well x


cosine
5 months ago

@ cammo thats a nice introspective post!

How long were you blind for?


cammo
5 months ago

@cosine I make it sound more dramatic than it actually was. I had a blind spot in my central vision for about 2 months. It was my diagnosing symptom. I could still see in my periphery but was annoying none the less.


cosine
5 months ago

@cammo

Oh , do people normally get it in the periphery?

Did you have to behave like ur eyes were on the side of ur head like birds? !


cammo
5 months ago

@cosine i’m not sure where people normally get MS related blindness. Mine wasn’t technically ON. I had a lesion further back where the optic nerves join. So it affected both eyes. I think ON usually affects one eye only.
I did behave a bit like a bird… you get used to it after a while having the font size maximized on your phone and computer helps. The accessibility function on iPhones is quite amazing these days.

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