Living alone with MDS

Hello and welcome, I am afraid I don't have any knowledge of MDS but have you thought of getting a treadmill (either new or second hand)? It is likely to make walking easier and they are cushioned which might make walking less painful. As for shielding, I have been a bit flexible with this and still go out with a mask and gloves.

Hello Nicky,

thanks for your reply, MDS is a blood cancer affecting the bone marrow, where white blood cells die before they are fully formed affecting the immune system. The chemotherapy I’m on for 5 days in every 28 stimulates the growth of cells and prevents more leukaemic cells growing, not a cure and won’t last indefinitely.

i did look at treadmills but the cheaper ones have very bad reviews, electric ones are very expensive and very large, I don’t have the money or space.

i have got an aerobic stepper which I can use and my heel doesn’t touch the ground. A physiotherapist put in touch with me by my GP sent me a set of exercises to do, I can only do 2 of them without pain. I’m 76 years old and the exercises are too much for someone with my condition.

Thank you for your suggestion. When I do go out I walk the back streets and social distance 2 metres.

best wishes

Hi

Very nice to meet you but I very much wish that we had met elsewhere. Have you just joined the community? If so, please allow me to reach out and welcome you to a very friendly, supportive group.

Holy moly! I've been here on this site for 4 years and never come across anyone else with MDS until now. Not just MDS but I also have Refractory Anaemia but not Blasts although I have been neutropenic a couple of times lately. If you read my profile, you'll see how mine was diagnosed. Just click on my username to see my profile. How was yours diagnosed, what was happening that gave rise to investigation?

5 months after my MDS diagnosis I was diagnosed with a spinal condition that put me in a wheelchair before the end of the year and of course I had to stop working at the job that I had done for 35 years so it's no wonder that I started to drink a little too much and when my wife and son went off to work I felt really low and lonely. My mental health suffered, so much so that I had counselling.

Have you heard of the MDS support group? I became a member a couple of years ago. I was trying to educate myself about MDS and I stumbled upon it. They produce a magazine every 6 months and give you a welcome pack to read when you join. 

I'm in Northern Ireland and I have to shield until the 31st July. I'm lucky that I have a large garden and I can go for walks in the fields around me. Well,. I can try by using crutches but it's too paínful. I've often said though that it must be tough for someone who doesn't have a garden and is forced to spend day after day after day looking at the same 4 walls. I hope we can do something to help lift your mood.

Take care and stay safe

Tvman