In that uncertain time again

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Running Bird
Posts: 7
Joined: 10 Oct 2013 15:55

In that uncertain time again

Post by Running Bird » 26 Apr 2014 19:36

Don't really know why I am writing, guess I just need some support. Am having 4th bone marrow biopsy in 2 weeks time as bloods have dipped twice in 6 weeks. Am being seen by the wonderful Kings but to be honest always feel in total denial about this whole MDS thing. This time though I am starting to wonder how many times I can get away with getting a good result. I am 42 and teach running, I am due to run my 3rd marathon in 5 months next weekend but have felt massively fatigued recently - but why don't I tell them that when i see them at Kings "oh no I am fine, my tiredness must be down to my job and my love of running" but if I am honest this fatigue is I think different, or is it my fear over 2 worsening blood tests, am I faking it!!? I regularly go to bed for half the day now, I am always in bed before my 10 and 12 year old (around 8pm given half the chance - but again wouldn't most women be if they could). With my running I am slowing down or rather have been a lot since December but is that because I have done too much or is it my bloods. Just a whole load of confusion going on here. Get dizzy a lot anyway, I don't think due to MDS, but this has worsened in last 2 weeks, again is that stress they say the Haemaglobin levels have dropped (which is the first time they have dropped - all the others have always been poor, but that one has remained ok), as I type I feel like I am on a ship!

Oh dear I have really off loaded on this one, husband gone to work, mother has no idea, children think I am lying to them about something. Just in a bit of a quandary and am supposed to be running a marathon next weekend and for once I don't think I can do it (am going to get another blood test at local hospital on Monday to help me make the decision).

Feel a bit stupid now having written this but shall post anyway. I am outwardly the strong character to others, maybe on this I can be what I am really feeling.
Posts: 581
Joined: 01 Dec 2009 21:52
Location: Essex

Re: In that uncertain time again

Post by chris » 28 Apr 2014 11:52

Dear Caitlin

I can see how difficult this must be for you to face when fitness and running are not only an interest but your career and I can see how denial might seem to be be the best course when you see things deteriorating but you do need to listen to your body. You are trying to rationalise your fatigue by saying it is your job or running but isn't the fact that your haemoglobin levels have gone down a more rational explanation?! And being dizzy - feeling faint -and mental confusion are also symptoms of anaemia so I am not sure why you think that this isn't due to MDS! Your activity levels are higher than most people's so the anaemia would have a much more marked effect. Is it normal to be in bed for half the day? I don't think so! You really are going to have to be honest at your next King's appointment and, dare I say, with your family?

You say you are having a blood test today and that might help you decide about the marathon next weekend. As lots of peolple say on this site, some people seem to function better at lower levels of haemoglobin than others so the the results/ numbers that you get may not square up with how you are feeling. Putting your body under such physical stress whilst you have anaemia cannot be good and you must be aware of the possibility of heart failure in such cases, fit though you undoubtedly are.

Caitlin, you shouldn't feel stupid about off-loading here and I think you need to reflect long and hard about this issue and involve your husband and family. You don't have to be "strong" on your own. Talk to your doctors at King's and seek their advice about the running. Sophie Wintrich is a good listening ear, too. MDS is not a disease of "mind over matter". It's real and you are not imagining how you are feeling.

Take care of yourself.

Best wishes

Chris. (F) Age 67 (2017). 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
Posts: 52
Joined: 15 Apr 2010 16:56
Location: Stoke Poges, Bucks

Re: In that uncertain time again

Post by Russell » 10 Jan 2015 10:54

Just wanted to say that I am in awe of your constant enthusiasm for running and those you are mentoring. The world, let alone MDS, needs role models like you! If you EVER want to chat about your MDS just let me know, happy to pop over to you for a coffee or two.

Age 55
RCMD 2009 at age 49
1x MUD BMT 2010
1x MUD SCT 2010
1x Haplo Transplant 2010
4 Marathons
4 other Half Marathons, a 10 miler and a Spartan Race!
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