Fitness with mds

Comments, thoughts and issues on any other aspects of MDS - not covered by other folders - PLEASE CHECK before you post in this folder.

Moderator: Steering Committee

Post Reply
raymondhowell
Posts: 15
Joined: 19 Feb 2010 16:42
Contact:

Fitness with mds

Post by raymondhowell » 21 Mar 2014 21:07

Hi all, just a bit of advice needed ,i have mds low risk have been on watch and wait for about 5 years, medication is aranesp injections once a week,i work full time as a butchery manager( average working week 55 hrs ) every night i get home i have got to sleep for 1-2 hours to recharge my self, i would love to have a go at the Birmingham half marathon, i dont know if it is at all possible looking at all the training i need to do to prepare for it,has anybody done this and is it possible with mds to build up to this level of fitness,if anybody can let me know i would be pleased to find out. :?:
chris
Posts: 628
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Fitness with mds

Post by chris » 30 Mar 2014 16:23

Hi Raymond

Your normal working hours make me feel tired just reading about it! I think it's admirable that you should want to attempt a half marathon but by the sound of how your everyday work leaves you so exhausted, I wonder if it would be a good thing for you - health-wise and would certainly suggest that you speak to your medical specialists before embarking on any intensive training, 13 miles is a long way without sufficient oxygen to your muscles -including your heart - so not sure how much advance fitness preparation would help? Though obviously general fitness is always a good thing. Wondered if you could try a shorter distance to see how that goes?

Best of luck in whatever you do.

Best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
raymondhowell
Posts: 15
Joined: 19 Feb 2010 16:42
Contact:

Re: Fitness with mds

Post by raymondhowell » 31 Mar 2014 21:07

Hi Chris, Thank you for your reply, i fully understand what you are saying and yes i do agree with all you say, i would love to achieve this half marathon but deep down i have a strong feeling my MDS specialist would tell me not to attempt it for the same reasons you have said, maybe next year i will have a go at a 10k fun run and see how it goes ,i will tell my specialist about my thoughts to run and train just to see what his advice is. i will let you know the outcome, hope you are keeping well kind regards Ray (Thanks again for your reply)
Devjon
Posts: 6
Joined: 16 Oct 2013 16:06
Contact:

Re: Fitness with mds

Post by Devjon » 03 Apr 2014 17:24

Hi Raymond,
I was recently diagnosed with MDS, (low risk watch and wait). It was the fact that I am a regular runner that alerted me to the fact that there was something going on, the fatigue that I was experiencing in training was disproportionate to the speed and distance that I was running.
I have carried on running and kept track of how my body reacts. Sometimes I feel ok and can keep up with friends, other times I know that I need to turn back as I feel too fatigued.

My suggestion is that you find your local parkrun ( it is a completely free event over 5K which takes place every Saturday at 9:00 am in parks throughout the country ) It is not a race, people of all ages and abilities take part, in our local one there are now about 500 participants each week, some whizz round in 17 minutes, some run and walk, some push their children in buggies ) there is a vibrant and encouraging community atmosphere and it is all run by local volunteers. All you need to do is register on the parkrun uk web site, print out your barcode and turn up on the day.

That way you can run / walk your way around 5K at your own pace and see how you feel. If you get on ok then you can gradually increase the distance and monitor your progress. I would not pay too much attention to the training plans for the Half Marathons that you see published, they assume that you are fit and well and going for a particular time, it is possible to run a half marathon with less but more selective training.

From your job description it looks as though you spend a lot of time on your feet, and that will help if you do decide to go for the Half.

Finally, I have been running for more than 30 years and have a fair bit of experience. Although I am not a registered Coach I have trained others, and coached my daughter and her friend to a successful London Marathon. If you do go for it I would be more than happy to offer any help or advice along the way.

Best Wishes whatever you decide.

Kevin
Russell
Posts: 52
Joined: 15 Apr 2010 16:56
Location: Stoke Poges, Bucks
Contact:

Re: Fitness with mds

Post by Russell » 05 Apr 2014 11:11

Hi Raymond,
I think I can safely say that prior to my BMT the thought of running a Half Marathon would have been a definite no. I think you need to know your body and how it might cope, but don't ignore medical advice - and I think you'll need lots of it. There is a lady called Caitlin who is also an MDS sufferer but who ran a Marathon just before Christmas - that's pretty amazing, although I think she was a long time runner. She might have some ideas on dealing with that type of challenge. For many, however, simply maintaining some sort of quality of life is a challenge in itself.

Russell - Running 3 Marathons
Age 55
RCMD 2009 at age 49
1x MUD BMT 2010
1x MUD SCT 2010
1x Haplo Transplant 2010
4 Marathons
and
4 other Half Marathons, a 10 miler and a Spartan Race!
Running Bird
Posts: 7
Joined: 10 Oct 2013 15:55
Contact:

Re: Fitness with mds

Post by Running Bird » 26 Apr 2014 19:17

Hello I am Caitlin Limmer the runner that Russell was talking about. I have I think low level MDS saying that I am about to have my 4th bone marrow biopsy and actually am not feeling fantastic at present and bloods have dipped twice in last 6 weeks. However, in response to the running a half marathon question, I think it is totally down to you, how you feel, how much fitness you have had in the past, and what the docs say. I have been running marathons for about 7 years now, but it is only in the last 4 months that I am questioning my own ability or rather the effect my MDS is having on me and my love of doing them. I would say that up until a month ago I would say push through, but as my bloods have deteriorated in the last few weeks I am realising that this isn't possible, but I don't want to admit it, am in a lot of denial I think. I ask them at Kings at every appointment - are you sure - do you think it is because I run too much. Anyway I am rambling a lot. Please feel free to post and ramble back. I am absolute passionate runner and trainer so am praying that I can keep going through the MDS.
raymondhowell
Posts: 15
Joined: 19 Feb 2010 16:42
Contact:

Re: Fitness with mds

Post by raymondhowell » 24 Jun 2014 10:17

Hi , sorry for not replying earlier but i have been very busy in my job, my last appointment with my mds team i asked about running the half marathon and what they thought of the idea, at present not recommended due to the fact i do need a nap after a days work to recharge myself , i must admit i would love to do the half marathon but in the real world i think it i a bit to much for me at the moment , thank you for your reply and advice kind regards Ray
raymondhowell
Posts: 15
Joined: 19 Feb 2010 16:42
Contact:

Re: Fitness with mds

Post by raymondhowell » 24 Jun 2014 10:28

raymondhowell wrote:Hi Chris, Thank you for your reply, i fully understand what you are saying and yes i do agree with all you say, i would love to achieve this half marathon but deep down i have a strong feeling my MDS specialist would tell me not to attempt it for the same reasons you have said, maybe next year i will have a go at a 10k fun run and see how it goes ,i will tell my specialist about my thoughts to run and train just to see what his advice is. i will let you know the outcome, hope you are keeping well kind regards Ray (Thanks again for your reply)
Hi Chris, sorry for delay in replying, been very busy at work, i spoke to my specialist and he said not a good idea to think of doing the half marathon ,due to my own energy levels not being the best, i will have to wait and see what happens in the future i will keep you informed if anything changes Kind Regards Ray
chris
Posts: 628
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Fitness with mds

Post by chris » 26 Jun 2014 22:36

Dear Ray

Although a disappointment for you, I'm sure it will be for the best to postpone for a while and see how your MDS pans out. If you need to rest after a day's work, maybe it's not the right time to be thinking about something so demanding on your body? Maybe some gentle walks in beautiful places would keep your muscles active whilest not overtaxing yourself.

Thanks for letting us know and keep well.

Best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
Post Reply

Who is online

Users browsing this forum: No registered users and 1 guest