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MS

Living with MS Edinburgh *This is my bit blog and therefore my thoughts/options * on Living with MS Edinburgh being an information day for anyone affected by MS that I happily attended, and will be more about the day than the travel to and from it ! This event was held in the Sheraton Hotel which was beautifully laid out, in a spacious floor in the hotel with many orange-clad volunteers supporting the 150 attendees. MS Scotland The area in the hotel had been planned well, wasn’t too big or small offering fine accessibility and had plenty of MS stuff throughout! So what was the order of the day, what happened? It began with a welcome from the chair, Mary Douglas from the MS Society Scotland (9:45 – 10:00) welcoming us and touching on what was ahead. Breaking Boundaries in MS Research , was started straight after ( ~ 10:00) by Becky Driscoll. A fairly generic(ish) overview (IMO!) of MS initially, presented very well. The content was detailed and shows/sh...
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Is what it is

Is what it is IT IT IT! There is no “It” in the title. Well, apart from actually making up the word “tITtle”! Not a mistake. When chatting about whatever, and #MS comes up as pretty usual when at an MS Social, that phrase is an acknowledgement of acceptance (canny phrase itself!). By saying it, we know that we do know what we/it mean/s. Good repeatability there! For myself, even by voicing it with another understanding MSer, it’s like a ‘mutual respectful recognition’ sharing. Acceptance. Here’s a tangent. I have recently started with Ocrevus as my DMD . So far (literally a couple of months as of typing) so good. It is doing it’s thing. I’m no better, and much more importantly no worse. Yes, I have had questions about my Ocrevus, due to the lowering of one’s immune system, and feeling terrible for a while. But! This time of year everybody seems to pick up a ‘bug’ or 2. Even some bloody COVID – I didn’t – phew. SAD. That’s S.A.D. “Seasonal affective disorder (SAD) is...
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PIP reflection 2024

  PIP reflection 2024 Over the last few months, it’s safe to say (metaphorically) that my head had been somewhat up my arse; with anxiety. All due to my friend P I flipping P. Yes. Personal Independence Payment ( PIP ). Having received the renewal form LAST year (that’s 2023 as of typing), I anxiously stressed to get what legitimate proof I could get to assist my honest form answers. Big kudos to the Citizens Advice Bureau for help with said form ‘completion’. I was struggling. And without ANY surprise, I still live with MS ! Multiple Sclerosis the chronic Central Nervous System disease. Has it improved? No. Is it progressing? Yes. Is there a cure? I and about 2.3+m others wish. Anyway, part of my ‘processing’ stuff is that I keep notes. Yip, my memory is far from good. Cognition . So, here are 3 fairly recent ‘notes’ relating to PIP that I still have in my phone for a short blog and how one’s anxiety has been: No escape (1st May) Missed phone calls, a voice message. Joanne ab...
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