Wednesday, 20 September 2017

My MS Journey - A Life Living with MS

On 23 January 2017, Mal Kiely was diagnosed as having "mild MS" (Multiple Sclerosis, a disease of the nervous system)
NOTE: This is not a "pity-party/woe-is-me" thing, as I'm simply sharing a very brief insight into some of the reasons as to why I may act so "up-and-down" from time to time.

This page is an index of my attempts to
blog-diarize my journey with MS

Who Am I? What is MS, and how does it affect me? What does it mean? I don't know what I should say to you, Mal Typos
My MS Symptoms MS Bloggers MS Twitters Archives
My other health issues Blogging Without Obligation MS Information A Balancing Act

#MS #MultipleSclerosis #ChatMS #LiveWiseMS #MSAwareness
#MSlife #LivingwithMS #CureMS #MSWarriors #MSFamily #MSPals #Thankful
#MSSucks #MSproblems #MSisBS
@MustStopMS @MS_Australia @shiftms @voicesofms
@msgetinvolved @KISSGOODBYEAUS @mssocietyuk

MS Blog Post Categories
Advice, Positives &  Encouragementt Emotions Humour Music Re-Posts Symptoms
Articles Family Medications Ponderings Sleep Weather
Diet Hospital Guys with MS Networks Socializing & Friends All MS Posts

Peas be with ewe 

MS & Isolation

One of the more unexpected things I have discovered since becoming disabled due to MS (and two other chronic diseases), is the sense of isolation I often experience.

Most people I am in contact with either have a partner/spouse, or family, or even a carer, to oversee their well-being. Someone they can intimately interact with, who appreciate the frustrating nuances of their daily-changeable situation. And they can journey through it all together.

I have no-one. I am doing this totally on my own.

And compared to others, I feel very isolated, in this situation.

I am happy being relationally-single, as I would not want to live with me while I'm suffering from all the conditions I have, either! I wouldn't wish that on anyone - I do not want to put anyone else through what I am experiencing daily. It's cost me two long-term relationships already. That's not what I'm talking about.

I have a few people who check-in on me now and again (and, for which, I am eternally grateful!), but as far as relational immediacy, I'm doing it tough, I have to admit.

I find it awkward to continue some of my great online friendships as often as I like, because almost everybody seems to have a 'significant other'/carer in their life - and I don't quite identify with that - sometimes it makes me feel kind-of uncomfortable relating with them, inexplicably. Maybe it's jealousy? I don't know... I don't think that explains it.

I'm not sure if I know how to explain the inexplicable.

I know it sounds obvious... but I didn't ask for this health condition. It's not my fault, and I have to make-do and deal with what I have with what I've got.

Some days are better than others. Some days I'm fine with it all. Other days, it doesn't come easily to me anymore.

I honestly don't want to / deliberately try to offend anyone - but somedays, I just don't give a shit anymore, tbh.

I'm finding it tough that I'm finding it tough. I think that's what I'm trying to say, as obvious as it sounds. I just need to say it.

Peas be with ewe 

MS Fatigue

Sometimes, my MS makes me feel extremely fatigued... the sort of mental and physical tiredness / weariness / exhaustion that doesn't necessarily go away after a good sleep. Not always sleeping well doesn't help me in that regard, either.

It's awful, as this disfunction prevents me from participating in life, and I miss out on a lot of people/things I enjoy in my life.

I despise becoming 'unreliable', but there's nothing I can do about it.

  • lethargy
  • weakness
  • exhaustion
  • weariness
  • dullness
  • exhaustion
  • feebleness
  • heaviness
  • listlessness
  • overtiredness
  • beat
  • bushed
  • spent
  • wasted

What to show your doctor (Source)

Sometimes, I get a slight headache with it all, as well.

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Peas be with ewe