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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 about
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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  a


  Ocrevus . Notes 1 The infusion was completed at 1pm, and I was asked to wait for 15 minutes after the cannula had been removed. I was told to take it easy for the rest of the day, that'd I'd be tired. Body not used to the new drug, nor my mind, given that I had been anxious about #Ocrevus day. Ok then, I'll accept a lazy day. Was planning a curry takeaway anyway! I am tired. A few nights of bad / poor sleep. Ocrevus. Notes 2 Second infusion (second half dose) done by 1ish. Then again asked to rest for the day. Yes, as per, I was tired. #Anxiety due to an earlier taxi booking (for 07:20), with the small alarm fear! And also a few wake-ups during the night. Usual, but! Prepared with laptop, phone (obviously), headphones, sarnie, bottle of water, and chargers in case. And a BBCi downloaded film. The same as my first unknown Ocrevus trip. Slower start than last infusion, but after the paracetamols and antihistamine, the weak steroid infusion did its thing for half an hour; wi


AlterG The what? A brand name? About? A truly, truly, amazing invention - a NASA invention - to allow a human to effectively experience movement WITHOUT GRAVITY! I kid you not. The following words should explain this a shit-load better!: Calibrated Differential Air Pressure AlterG ® Anti-Gravity Treadmill™ technology combines precision unweighting technology with real-time gait analytics and video feedback. No other unweighting technology offers as much precision, accuracy and comfort than AlterG. Better?! Obviously! The one word I missed was Treadmill! Doh! Well, I’ll stop there regarding my initial description of this superb piece of brilliance. Click on the linked text above or forthcoming pictures for more (no commission for me!). Wikipedia - AlterG After an initial ‘test’ of some of my abilities - set the control - I began a week later (on 4 subsequent Wednesdays) - and my eyes were opened! 1st Session I didn’t make notes directly after that session! Another MS meeting took those