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General questions and discussion about multiple myeloma (i.e., symptoms, lab results, news, etc.) If unsure where to post, use this discussion area.

Re: Living life - before and after the diagnosis

by Edna on Wed Sep 30, 2015 4:12 am

Don states
"Live your life"

I could not agree more. On being diagnosed (rather late by an institution that should have got it right) I was not unhappy or depressed. My thoughts were and remain to 'get necessary things done' within the limits of my changed functioning. Because of the scale of what has been / is needed (I had lone 24/7 practical responsibilities for two very aged parents, with an ill sibling, and all three passed away soon after each other), this necessitated a lot of practical work when my mobility is limited.

The sudden isolation too forced me to develop a little fun local social activity within my limitations. But then I ended up in hospital, (for the 5th time in a year), with a chest infection (my pre-existing issues and myeloma are a very unsafe mix). Now on second line treatment, although changed yet again from how I was on first line therapy, after a three month 'slow-down' I am back to dealing with matters that I hope I live long enough to conclude.

I have even started to look at hospices, because although not focused on myeloma all the time, it is still a disease which needs attention to end of life issues, especially when you have no one to take care of you. I do not see this as morbid, just being in control.

How we deal with the card life deals us is up to us- ' half glass full, or half glass empty'. I realise that the younger Beacon readers will feel 'cheated' of their lives. But as Don says little children all over the world are worse off than us for want of resources to treat them, not from want of effective treatments for their diseases.

I find having a body that limits my abilities frustrating at times. The fear I have is of infections and admit hanging around children or places where there are many people or people coughing etc. scares me now. That is the change I find depressing and means I avoid doing a lot more than I might. I rarely had infections before being diagnosed with myeloma, or if I had them they were very short lived. I would have liked to do voluntary work, but now take no chances.

So each of us will find our approaches to living life are not just based on having myeloma, but related to how we lived life before having it and our personal philosophical attitudes and emotional make up. If I find myself feeling sorry for myself I aim to snap out of it fast, it does not help me live.

I always liked the Pollyana' stories because there is so much to be grateful for, even in adversity.

Edna

Re: Living life - before and after the diagnosis

by Annamaria on Wed Sep 30, 2015 1:38 pm

You could get hit by a bus tomorrow. But it does not happen very often. You die of myeloma instead, it is much more probable.

Annamaria
Name: Annamaria
Who do you know with myeloma?: I am a patient
When were you/they diagnosed?: April 2012
Age at diagnosis: 58

Re: Living life - before and after the diagnosis

by Edna on Wed Sep 30, 2015 3:06 pm

Annamaria,

I have in my life encountered highly unusual situations where my life was potentially at risk (one was a major newspaper story globally - people did die). I have been hit by a vehicle too, more than once. You never know what will happen in life.

Edna

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