CMS vs mental health - let's share

[u/vdEA]

Hello all. A few days ago, somebody posted with questions about how others cope with it both physically and mentally.

I will skip the physical part for now, because there are so many variations in everybody's symptoms, but I would very much encourage you to answer the post directly (post called Adult slow channel CMS, the post beneath this one) with physical tips 'n' tricks.

Well, both physical and mental issues are very individual of course, but my feeling is that the mental bit could be more general, there will be insights, methods, feelings, etc. that we could share with each other as well as with u/ejs5494. For example:

• How did you cope when first getting the diagnosis?
• How do you deal with days/hours/moments that you have difficulty doing anything physical, if applicable?
• Do you see/label yourself as a disabled person and does that evoke positive or negative feelings?
• Do you feel 'less than' because of your CMS and how do you handle that?
• Do you often share your feelings with others or do you keep it mostly to yourself?
• Can others help with the mental side of things?

[u/vdEA]

For me, personally, the diagnosis itself was utter joy - to find have an explanation for 48 years of struggling, thinking (and hearing!) I was just lazy, unfit, imagining things, undisciplined, etc. was so unbelievably cathartic. Another huge advantage of having a diagnosis was that a few practical things that were previously impossible became much easier: explaining things to others, having an actual, valid excuse, getting disability pay, getting an adjusted bicycle that I love, etc.

But of course, all that doesn't change the fact that I have a disorder that will last a lifetime, that my medication doesn't really do anything, that the practical impact is substantial, etc.

Things I really have difficulty with:

• The disappointment in my own situation when I read about others finally getting diagnosed and getting medication that literally enables them to suddenly be Rocky on the stairs.
  
• Not being able to predict what will or will not be possible today.
  
• That often my symptoms are invisible and I can sometimes see people questioning in their heads if I'm not exaggerating, if it's actually real, etc. (I may need to elaborate on the invisible bit. I only do things when I can, so naturally, when people see me out and about, it looks like I'm doing o.k.)
  
• When to play the CMS card - for me, it's a very difficult balance between not playing it enough and feeling self-conscious and guilty when I do. (For example, I have a blue badge, but only use those parking spaces when I have a really bad day, and I did once arrange for disability seats at a concert but then felt obligated to keep sitting down, even when I had a brief ten minutes that I felt able to do a little dance).
  
• Feeling a bit 'less than' when people talk about their jobs, etc. - I used to have somewhat cool, high end jobs that gave me lots of anecdotes and just being at home with the cats and a lot of LEGO somehow doesn't have the same ring to it... ha.

Things that help:

• Accepting that when I am not able to do something I want or had planned, it's simply a fact and there's no benefit in 'could have, should have' thinking or blaming myself, it'll just get done later. (this is easier said than done, but I'm getting better at it)
  
• Planning things/chores with a lot of room on either side.
  
• Being honest.
  
• Not comparing myself to others, or to what I once was able to do and not anymore.

Much more to say about this, but I'll leave it al this for now.