Thursday, 6 March 2008

Still a quandary...

My allocated-at-the-moment social worker came to do a new asessment recently - and went away with completely the wrong end of the stick. She judged me, and the situation, on my “performance” that afternoon; that hour.

Ha ha! Derision and laughter from MSers everywhere. As if we don’t make an effort. Perk up with the unusual interest in our sorry state. Enjoy the attention. (Well, acually, of course, I don’t, I can’t bear people coming, it hurts and tires too much. Plus they nearly always have a “perfume” to make things harder. I’m just polite and that’s my downfall – it gives the impression I’m better than I am.)

Anyway so H. (that is her initial) decides I’m “managing” physically (not seeing the pain or understanding I’m pushing myself way past managing just because I prefer to be alone than with someone who: a) doesn’t care, and b) I’m allergic to). So that, we should forget about spasms and falls; sons leaving and builders arriving; spiders in the middle of the night. Forget about how much I don’t want to be separated from Lucy (surprised me to learn that one!) and put aside the idea of live-in care...


Ah, the place toughie oldies live at. Independent living but with 24-hour care when needed. Available on the premises (usually a block of flats [in USA, apartment block]). You get a flat to yourself, surrounded by like-minded, like-aged others, plus nurses/assistants at the touch of a button. Meals are provided [in a communal dining-room] and washing done, but your flat is self-contained: you can keep yourself to yourself. In other words these facilities are for anti-social (maybe they smoke), unloved and unwanted people, who have learnt to appreciate their own company and are, possibly, a little cantankerous!

And I’m not being fair (that was just me I was describing!). Probably most of these folk are widows and widowers who do want their own space but need the occasional help. Good people - trying not to be a burden. And I guess I should be flattered that H. thinks it would suit me – no one else being a nuisance. But I’m not...

I’m not as “senior” as the criteria call for (only in degenerative physiology!) and require more practical help than the average resident. As much as we keep trying (MS Nurse, me, etc.) Social Services still do not comprehend primary progressive multiple sclerosis (PPMS). And – muttering something about possibly moving to a Care Home later (again with a move?!) - H. went away to see if I could live “Very Sheltered”, and take Lucy with me.

A week later she rang to say I couldn’t.

So: no builders and no spiders, that’s good; but, also, no Tom and no Lucy – bad!. “No. No. No!” to Sheltered Housing then.

And next thing from H.? She’s gone on a week’s leave!

Oh great. Tom has taken half his boxes now and assures me he will “vacate” on 1st April.

Ah! I was very tearful last week...

However, then along came a helpful Comment from Steve of The Power Guides (see Lucy’s post – he wrote it to her!), just as I was [almost] reaching the same conclusion: i.e. I’m stuck, may as well try to ride it out, keep writing and hope for better/miracles.

And I felt better. Thank you Steve, and all you blog friends. You are what will keep me going.




I have an MS Blogger Project underway over at my place. Please visit MS Awareness, Blogging Friends, and a little Link Love to join in.


Virginia Phillips said...

Hi Lisa,

thank you for this note and the invitation.

I keep meaning to think about sending something to your "Carnival of MS Bloggers" but, I'm sorry, lack of energy you know! I'll certainly try one day.

I always enjoy reading the "Brass and Ivory" blog.


Anonymous said...

Just passing through... *waves* :o)


Hi, I apologize for the 'form' letter but it is the easiest way to pass word most quickly.

I am thrilled with the response to the MS Blogger project started at my blog, Brass and Ivory. I appreciate all those who took time to post about it on their blogs. I have discovered even more bloggers who have MS, whether they blog about the MS or not. A new listing is available at MS Blogger Community Project Revised.

Secondly, I'm looking for submissions for next week's Carnival of MS Bloggers. Information can be found at the end of each issue archived at Carnival of MS Bloggers. What I'm looking for this week are posts related to creativity. I discovered so many new bloggers who quilt, or knit, or crochet, or write, or photograph, etc. Basically, what do you do to express yourself?

Thank you so much for participating.

Lisa Emrich

P.S. I also apologize for any increased 'spamming' of blog comments due to my growing linklist of bloggers with MS. For that I am sincerely sorry.