What do you miss the most, and what has become more precious to you since your diagnosis?, Reflection! Options

[gingermagic]

What do you miss the most, and what has become more precious to you since your diagnosis?

[Akorah]

The only thing it has upset me to lose is my singing voice. Before my diagnosis i used to sing with my daughter all the time just 4 fun but she has entered competitions so really i was training her i would never have the guts to sing in public lol but i realised after my bad attack that lead to my dx i couldnt sing anymore and that was the only time throughout the whole thing that made me cry! And now 5 years on i find everyday i walk my dog is wonderful!!! Sod the singing now i just listen to my now pregnant daughter sing and thank god im alive to hear her and i will be alive to see my beautiful first grandchild in April!! Even now when im going throught a bit of a rough time due to a relapse i think lifes great!!

[angela]

To be honest I could say everything I can't walk, read (lack of concentration), write or type very well, thank goodness for speech recognition, but since my divorce I'm happier than I've been for at least 20 years.

I moved into my Housing Authority bungalow early July to start my new life, after a very bad start, everything is now going very well.

I have a lovely bunch of carers, a new friend, who is also my cleaner, my newly married daughter and lovely son in law live 5 mins away and like you Akorah have my first grandchild to look forward to in April.

So although I've lost a lot over the years, I've a lot to look forward to!



Angela

[gingermagic]

I used to play the drums in a band and had to stop that. So Akorah, even though you might have lost your own voice remember, all those years of singing still gives you a good appreciation of music in general. That cannot be taken away from you (like hearing your daughter sing!)

And who knows, you might find new music tastes that you never knew that you had!

Angela, I know exactly what you mean with lack of concentration. The two things that work for me (with cognition stuff) is Ginko and without a doubt Hyperbaric oxygen therapy. If you have somewhere near to you that does this, don't miss it!.

[Scully]

Hi Gingermagic.

Your post made me think.

Frankly, only a year ago, I was working, running a home, and generally having a normal life.

I miss being 'me', and, although I've accepted that life will be different with PPMS, I long to be around work colleagues, and doing what I did, investigating fraud ( that worried the DLA people I can tell you !) a job I did well, but, maybe, I will be able to return, or work from home.

MOST OF ALL, I miss my sailing.............I'm a qualified yachtmaster, and have sailed many small yachts, over very big oceans, the sea, the wind, the crew, the exotic places........arriving in Barbados, after 21 days of sailing the beautiful way to the 'new world'.

I'm not sure that I could sail, and just be a passenger, I'd hate that, not being able to run across the deck in a heavy swell.........maybe I could buy my own yacht again, and just sit and bark orders to an unsuspecting crew !!

BUT - having said all that, I have two great grown up kids, and 2 fantastic grandchildren, a loving and caring partner, who accpets the change in me without question, and I don't have a death sentence either...

I think everyone on this site is a complete hero and treasure, we all get through the days, one way or another.

Luv and hugs to everyone

Scully
xx

[Christina]

Most of all I miss my independence - being able to do what I want, when I want without needing anyone to help me. I miss wandering around shops on my own, just browsing and not falling about all over the place and getting tired quickly. Most of all I miss feeling well.

Chris

[Heste]

On the face of it your questions are quite simple....but when I think about my answers they become quite complicated. They are however very good questions.

What do I miss the most?

Well, I don't really miss anything. This is because I have a mindset that doesn't look at the past with regret. Its almost as if John in the past is a different person to John who is now. That John rode horses. This John doesn't. I have great memories of riding. I have rosettes. I have a saddle in my front room on a stand. I have photos, videos, a big scar across my stomach and various other memories of my life with horses. But I don't miss it. It's a bit like going to a concert. You enjoy it while it lasts, you have fond memories of it afterwards, but you don't miss it or morn its passing. That was then, this is now. Would I want to get back to horse riding if I could? Nah, not really. One day if the opportunity arose I might get back on a horse but it would be just for that moment

What has become more precious?

My time....and what I do with it. I work fewer hours now (but I still work too many according to my wife).
My energy....and what I do with it. I am still learning to not do somethings as I will not have enough energy left to do other more important things later.
Conflicting with my desire to free up my precious time and energy is my desire to preserve what I have. This does involve needing to work and earn which costs time and energy. It is a sad truth that being disabled does mean that I have to work harder (or smarter) just to appear to be keeping up. So, on reflextion, my ability to work is also more precious to me now.
I should say that my wife has always been precious to me. More now, but not because I was dx'ed with MS but because she just had thyroid cancer cut out.

Thank you for your questions,

Regards,

John

[Dianni]

What a brilliant couple of questions!

Like Chris I miss my independence. I miss taking things for granted. Everything from making a sandwich to going out for the day takes planning. I miss spending all day digging and planting in the garden. I miss walking my dogs. I miss being able to keep the house properly clean rather than tidy. I miss having a long soak in the bath. I miss being able to run up and downstairs for things.

Having said all this, I, like John, don't dwell on it. I try to do things smarter. I manage my time far better. I save my energy for the things I enjoy. I keep my fingers green (or rather dirty!) by setting seeds and planting them up. I take cuttings and grow them on. I am fortunate in having a large garden so I sit on a chair and through balls for the dogs, just as I did on our walks. They still get the excercise, I just don't walk. The house is tidy, the floors get mopped twice a week rather than every day, but thye're clean. I have a bath lift to get in the bath and when I really want a soak, I have a full length bubble mat that stops me slipping down the tub and my husband helps me in and out. (I manage this once a fortnight lol). I've moved things about in the house so they are more easily accessable and don't fret if I have to wait for someone to come in if I have left something upstairs.

What do I appreciate more?
My time and energy, my general health (I might be disabled, but I'm not ill), the time I spend with my amazing family and friends, my lap top, the size of my house (I will not have to move as it's big enough for me to get round in a wheelchair) the NHS (I can't imagine having to think twice about seeing a doctor in case I can't afford it or my insurance wont cover it)

I don't LIKE having MS, who does? but I don't despise it either. There are far worse things in life. Because of MS I've made so many new friends! I appreciate the smaller things in life much more like watching the seeds or cuttings grow, seeing my grandsons have a flour fight (don't ask) I am still me, but a different me. I'm not the person I was 12 months since. I've grown up. I've come to terms with a lot of stuff from years ago and generally am a happier, calmer, more easy going person. Not better, just different with more friends and a changed outlook!

Hugs
Di
xxx

[gingermagic]

I'm so glad my questions have been taken in a positive way?

After writing them, I was aware they could seem depressing, they were not meant to be.

[DizzyDora]

I mostly miss fell walking, dancing with my daughter, reading, I used to love reading but these days the words swim on the page and I can't seem to concentrate on the story. Mostly, independence, having to ask my family to do things for me, I've always been a "do-er" and go on with stuff like decorating, gardening which I loved, moving furniture, all sorts. But these days I have to deligate and I hate it
Hope everyone is having a good day today

Hugz DD xxxx

[gingermagic]

What a fantastic perspective all.

Thankyou John for well thought out and appretiative answers to my questionsons.

Events can be enjoyed without regret of there passing. Missing something does not dimish the significance of the event.

Actually you remind me, I must not let the fact that my energy is a limitied reservoir feed my frustration.

Thank you for your answers.

Gingermagic

[Lindyloo]

Hi guys

Just to add to this - I try to be like you John i really like your thoughts on this... Sometimes i get sad at what i cant do anymore but after reading some of your other posts i always find them so inspiring... Like for instance i am contemplating buying a bicycle...but pondering with the thoughts of will i be able to use it - but i cant ride a bike like i used to...but i might be able to ride it to the top of the street and then pay the price.. so here i am tonight wondering what to do??? Stuff it ..im gonna go buy that bike... a wee go every now and then might be a good thing..
I do miss not been able to do the simplest of things - like riding a bike and not having to worry about how far to ride it or will i fall off it...LOL
I miss walking to places....and i miss my healthy body i once had.... but... i am grateful for everything i have and i know it could be far worse... I always look on the positive side and i always am up for a laugh..

I appreciate the smallest things in life like Di says...

Nice to meet you Gingermagic -