In that uncertain time again

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Running Bird
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In that uncertain time again

Postby Running Bird » 26 Apr 2014 19:37

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.
MollyP
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Re: In that uncertain time again

Postby MollyP » 27 Apr 2014 10:28

Biiiiiiiiiiiiggggggggggggg. huuuuuuuuuuggggggggggssssssss

Being ill is not nice. Being poorly with MDS is seriously not nice.

I can't speak about the feelings of an MDS sufferer cos I am the wife of one but I always want my hubby to feel the best he can, and if that means opting out of something I think it's the best thing to do and I would support him all the way even if I was bitterly disappointed.

All I will say is be Very Very Nice to YOURSELF, don't make yourself feel worse, and come here and off load all you like
Love
Molly
Xxxxxxxxxxx
*** *** *** ***
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK
April 14 Taken off Hyd' - low neutrophil
Still w&w
Jan 15 raised counts but retains w&w status
May 16 still w&w
Running Bird
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Re: In that uncertain time again

Postby Running Bird » 27 Apr 2014 12:08

Thank you Molly, I actually feel a lot better today for off loading, it is SO nice of you to bother responding, I feel melodramatic even posting, shall see what the bloods say tomorrow and whether a marathon next weekend is the best idea or whether I should go and enjoy some other German fun!
Devjon
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Re: In that uncertain time again

Postby Devjon » 27 Apr 2014 15:33

Hello Caitlin,

Sorry to hear that you are going through a bad patch. I am also a runner and was diagnosed last autumn. I have noticed that my running and training ability does vary over time, sometimes I almost feel like the old me and at other times I really really struggle.

I notice that there is definitely a qualitative difference to the fatigue from the normal tiredness that we experience in the latter stages of a Marathon, and that altering my running routes to avoid hills wherever possible helps, as does staying well hydrated which seems to delay the onset of "heavy legs"

As for the sleeping I am usually in bed by 9:30 and often need to sleep in the afternoons. I am an early riser and find that running early in the day works best before I become too fatigued. Dizzy - yes. I make a joke that my "autopilot" is playing up, but it can be embarrassing at times. Another thing I have noticed is bouts of leg cramps a lot more frequent and severe than before as I rarely used to get them. I rehydrate after each run with a cocktail of tonic water and orange juice with one of the "Zero" tabs dissolved in it.

Do discuss your symptoms and feelings with the people at Kings, if they aren't aware of what you are going through then they don't have all the information to consider when deciding on your treatment. Having said that I suspect that they have little experience of dealing with athletes with MDS, and don't understand the physical and emotional impact.

With regards to your Marathon next week, have you considered a run / walk strategy ? I have used it in long training runs and found that an 8min/2min run / walk regime worked well for me. Whatever you decide, have a good run and let us know how you get on.

Very best wishes

Kevin
sophie
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Re: In that uncertain time again

Postby sophie » 28 Apr 2014 10:50

Hi Caitlin,
well done for off-loading a bit more - this is why we have the forum.
It is not a sign of weakness, or giving in or giving up in any way - but venting emotions and concerns amongst people who understand.
We think it is a healthy and beneficial way to help cope with a difficult situation, until you can re-group and carry on.

As others are saying, don't be too hard on yourself - and mainly be honest about feelings and symptoms.
You are a wonderful lady, juggling a lot...
As mentioned, I'd like to put you in touch with one other person - very similar to you ;)
I'll email you separately.
With warmest regards,
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
Running Bird
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Re: In that uncertain time again

Postby Running Bird » 30 Apr 2014 18:39

Thank you, all, for taking the time to respond, quite incredible. Well the end of the story was .., my daughter got diagnosed with scarlet fever yesterday so I have cancelled my trip to do the German marathon anyway. If I am totally honest this week I have been so tired I have coped till about lunch time each day and then been in bed, my husband has been fantastic about this. HATE it though as this is JUST NOT WHO I AM! I want to push boundaries, I want to go out and run as it makes me feel better but it is just too much at the moment, whether it is phsycological or otherwise. Who knows, I have never been bothered by the stress aspect before, but maybe it is my time to learn about stress and tiredness! I think I shall talk to Kings a bit more realistically about the fatigue, I am going to chart it a bit so they can judge what it normal and what isn't.

Thank you again so much for the shoulder all of you.
MollyP
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Location: South East England
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Re: In that uncertain time again

Postby MollyP » 30 Apr 2014 20:47

Learning to live with stress has something I have learnt a lot about over the past ten years. There are many different things you can do to help yourself. I personally love a bit of self hypnosis. I went to a hypnotist and he taught me how to do it. I am mulling over mindfulness at the moment too. Guided meditation can be very nice too, and I also find curling up with a good book helps me as well Maybe you need another hobby that evolves sitting still with your feet up, I sew and paint.
I hope our daughter gets well soon and that you find some energy to do the things you love the most.
Love
Molly
Xxx
*** *** *** ***
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK
April 14 Taken off Hyd' - low neutrophil
Still w&w
Jan 15 raised counts but retains w&w status
May 16 still w&w
chris
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Joined: 01 Dec 2009 21:52
Location: Essex
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Re: In that uncertain time again

Postby chris » 01 May 2014 18:04

Dear Caitlin

Sorry, don't know why my other reply was on another thread? Maybe you posted twice and I didn't pick up the replies on the other post!

Anyway, your dilemma has been solved by another means so you need not agonise over the decision any more!! You sound relieved and I think you are maybe making the transition and coming to terms with the realities of MDS. Sadly, it may not be who you were but increasingly it will become who and how you are now. I hate it too. Being ill is not who I was and I resent it bitterly and get pretty angry about the unfairness of it all but in the end, that doesn't really help! I think we all need to find a way of living with it and doing the best we can. Molly makes sokme good points which apply to caregivers as well as the MDS sufferer.

If you can get hold of past Newsletters (go to the Newsletter tab on this site), look at Issue 3 and the article "MDS and our minds" which has some good sense about psychological adjustment to serious illness. If you feel it would help you, ask your clinical nurse about access to counselling which is on offer at King's

Hope your daughter makes a good recovery.

When are you next at King's?

Best wishes

Chris (one of the shoulders!)
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
Running Bird
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Re: In that uncertain time again

Postby Running Bird » 06 May 2014 19:41

Thank you all again for these replies. Chris in answer to your question I am at Kings tomorrow 7th for bone marrow biopsy and then 21st for results.

All of your replies really helpful, still don't feel I merit this sympathy, but that is something I suppose I need to come to terms iwth too.

Daughter much better from scarlet fever and looking over my shoulder so shall stop now.

Many thanks.
Caitlin

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