International MPN News, Science & Opinion

Easier living on my own

EASIER LIVING ON MY OWN.

Manuela Manuel

When diagnosed in 2005, I had no symptoms. Hydroxycarbamide side effects plagued me though and not being aware of any MPN support groups made it difficult to allay feelings of fear, frustration and isolation.  By 2007,  symptoms started to appear, things became more difficult because they were interpreted as possibly being the result of other underlying conditions and I was referred for other test/diagnoses several times.

This remains the case as each symptom and secondary condition (PE, EM and Microcytic Anaemia) is scrutinised in isolation to ‘eliminate from the list of other possibilities’.

A sporadic MPN means that family and friends are and sometimes irritated bemused by symptoms of fatigue, lack of concentration and general malaise without, in their view, ‘good reason’. It has been a journey in isolation because there are so few people one can actually talk to face to face with about MPN.

Sympathy  is not what I’m looking for… but you don’t get the same concern or understanding from the people closest to you who are affected by your change in lifestyle, and your approach to dealing with this rare condition.

There is very little one can do on days when you don’t feel energetic enough to carry out even the simplest task. I had a problem with my son who would regularly  say  ‘but yesterday you were ok and today you’re in a bad mood, again!’ – I’ve never really been in a ‘bad mood’. I’ve been exhausted, become desperate because of uncontrolled bone pain and generally frustrated by the mysterious invading army of ever dividing cells causing symptoms  that  can’t actually be seen or evaluated

Over the past 6 years, I  expressed these concerns to medical professionals. In the main they have been attributed  to my ‘feeling a bit low’. I’m not quite sure what their interpretation of ‘a bit low’ is but that little phrase does turn up in my notes quite regularly. More recently, there’s been the suggestion that I seek ‘health psychological input’ because of my ‘single’ status and ‘other life’s events’.

Frankly, I feel better able to deal with  MPN living on my own, than having to fend off/justify or account for my reactions to the condition’s symptoms.

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© Manuela Manuel and MPNforum.com, 2012. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Manuela Manueland MPNforum.com with appropriate and specific direction to the original content.

Comments on: "Easier living on my own" (2)

  1. Barbara Kurtz said:

    Thank you for sharing your story. Making family, friends and the medical profession understand is okay, to put it nicely, interesting.

    • Beatrice Larroque said:

      My leitmotiv answer, to my hematologist’s inquiry as to how I’ve been feeling, is “I’m tired”, but I am really tired of saying I’m tired… When I said last time that I had no energy to do anything, that I was dragging myself all day long and falling asleep multiple times a day on the couch, he mentioned I should talk to my therapist about my depression. Well, I see my therapist a couple of times a week, and no, I am not depressed, I know what depressed feels like, I am simply fatigued, just somewhat more than usual. It is frustrating to try and have others understand that fatigue is a real issue, not resolved by sleep, that all of us MPNers are facing daily. It is even more frustrating that no one, unless suffering from a disorder causing such fatigue, can relate to what it actually means. Even doctors don’t really know what being fatigued means. It is invisible, cannot be measured, can be attributed to many things other than MPNs, and it is very subjective, but nonetheless very real.

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