[Alex]

Escape

by Alex on Mon May 26, 2014 12:48 am

Sleep, the chance to escape and dream about what I could once do without pain, without an appointment, without a pill.

Sprinting along a beach, a golf swing as though the ball wasn't there, picking up a 5 year old, sleeping thru the night or laughing over dinner and a thousand drinks.

Myeloma bores scars into lives that were so full, lives that were full steam and had promise, ambition and plans. The spectre of help, a monthly breakthrough, something new mentioned in line 17 paragraph 43 ... let's grab it before it disappears into the vapour of past hope.

For the split second on wakening, that pure second before memory reminds of multiple myeloma, that second when it's gone, invisible, hiding ... then step by step, it unfolds to the instant when the day becomes clear and the routine commences again ... I'll wait for more sleep tonight.

[rumnting]

Re: Escape

by rumnting on Mon May 26, 2014 10:33 am

Even as just the spouse, not the one that actually has multiple myeloma, I totally "get" your post. It's been 3 years for us, and though my husband is doing relatively well, I miss the days when every thought wasn't influenced by multiple myeloma.

[SusanMary]

Re: Escape

by SusanMary on Sat May 31, 2014 4:31 am

I too miss the old normal days. I wake very early each morning and find very little escape from multiple myeloma, I have had this for 18 years and am now fighting my 4th relapse.

I have always maintained that it is much harder for the carer/partner as they are on the sidelines and there is very little they can do to help. We, the patients, are at least doing the fighting. I have a very supportive and loving partner with his own health issues and I watch him watching me and wondering if this is the week that he will lose me.

It is dreadful. I don't know the answer to this conundrum.

[Tori]

Re: Escape

by Tori on Sat May 31, 2014 10:38 pm

All the things I used to do that I took for granted, how I miss them so much.

Asked my doctor last week if I would ever be able to bike ride, run, dance and the answer was no!
Even though I have had a stem cell transplant it was unsuccessful and now there is so much damage to my spine due to fractures, etc, that any form of exercise or activity is out of the question

How do you adjust your life and thinking knowing that you are so restricted?

Yes I am grateful for my treatment. My doctors have been fantastic, but it is so hard not even being able to do the mundane, who would have thought anyone would miss vacuuming the floor or making a bed! But I do. Having been such an active person and working all my life, now I feel like I am useless. Yes, you can spend your time reading, watching movies, etc , but I want to be of of some use. Would love to do community work, but can't stand long enough due to pain that I can't go anywhere.

Would love to hear from others how they have coped. Just feel like my life is passing me by.

[Nancy Shamanna]

Re: Escape

by Nancy Shamanna on Sun Jun 01, 2014 9:50 am

Hi Tori, would you be able to access some physiotherapy for your injuries due to myeloma? There are gentle exercises I was shown, using a theta-band, for stretching out the muscles. Also, working out gently in a swimming pool can be helpful since the buoyancy of the water helps to support one's weight . There has been an aqua fit class here just for myeloma patients, set up due to the efforts of patients and the City recreation department. That was a very useful thing for a patient to do, to do organizing within a support group.

When I had the vertebral fractures, it was really difficult for quite a while, and I still have to be careful not to overdo it! But the bisphosphonates helped with healing. Are you still on myeloma treatments too? (Are you in the UK? I think I remember that from previous posts.)