Come on!

  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...

Coronavirus realisations? This is fun isn’t it? Hopefully I am not going to repeat my previous Coronavirus blog [ there! ], but sure there will be overlaps! What realisations am I on about then? This / these struck me very recently. The staying indoors more as we are supposed to – previously explained! – giving me more ' boring me time ’, giving positives? I am doing what I can the best for my physical and mental health, under ONE set of rules. MINE. I haven’t got to be anywhere at a certain time, do anything specifically, rest not-guiltily… Aye, sounds like they all go directly against the set of government COVID rules; but it doesn’t. Let me explain a bit. The statement that was said was to stay indoors , and remains overlying advice. So, I am ‘adhering’ mostly to this straight away. Fun? Well actually! For example, when I have the/some permitting energy I may attempt to do: Some kind of morning fitness – MS friendly YouTube mixture; like P...

Season change Autumn is in full force. Is it? Well the leaves think so and the cooling weather thinks so; or does it?! Recently there have been temperatures up here (the north east) hitting bloody 20°C! Yes, that is nice in summer months (obviously higher please; and was this year to be frank!) and not one to whinge about any other time; unless. Unless? Well, you know where I’m going with that. Yip, M bloody S. Temperature can be a nasty (for want of a taboo-free word!) trigger. Can. Not everyone granted, and depending on the type of temperature; e.g. dry or damp/humid. Enough of that; for now. It is currently October and so far, so good in that I’m having (touch wood) a good month with a few notable ‘good’ days. Those who know what I mean by that, know. Just a month then? Yes, in that apart from A great week last month, I did not really enjoy September. Change of season? Who knows! Now it’s been and gone - moving on! What is/are the change/s making a posit...

Positive Affiliations 5 Straight to it! #lesswaffle! 1. Tysabri 108. Another? Thankfully YES! Those who know, know! My MS treatment, my DMT ( Disease Modifying Treatment ; DMD…Drug), and it has done and doing its job. Touch wood. I like to think that the week prior to the infusion I was quite active and energetic in my own way; then the reminder. Tysabri gets commonly named ‘magic juice’ by its MS recipients. I can’t quote stats for those of us who get Tysabri that are NOT affected by the time between infusions. Some are though. Commonly I am one that knows when it is the 4 th week of the 4. More fatigue with symptomatic responses as an example. A top-up then. Literally! The weekend was largely spend sat on my arse doing not a lot. The actual day after the infusion (before the weekend) I did ‘receive’ a session with an MS specialist Physical Trainer, all positive for the MS journey’s benefit. Then a welcome sit for a meditation session thereafter. Back ...

3rd Year Medical Students  Cranial Nerve Examination Two weeks ago (second week of October 2017 ) I answered a call asking me if I would like to do as I have done before, (as an expert patient) at the Newcastle Clinical Research Facility . When I told Andy – the coordinator on the phone – I’d done it several times before and that I would rearrange other appointments to suit, he was a happy chappy. One of the appointments was Tysabri number 97, my first at CRESTA (Clinics for Research and Service in Themed Assessments), a new ‘venue’ to get my infusion (I'd rather stay where I was, but!). A phone call or two later and job one done. Others followed suit and I was free for service! As I have previously blogged this, I will not repeat the whole Cranial Nerve Examination process again, but will repeat that I enjoyed it once more and was left tired once more too! However! The hard work (it does get tiring!) gave me a thirst. I had a thought. An obvious th...

Waffle At time of writing this waffle, it is the 9 th month of the year already. That’s September if you don’t know! How the hell did that happen (so fast!)? I know in my nerdy view on things – ‘time fractions’ – get smaller as time itself goes on. Getting older! Anyway, back to the kitchen. Not really but that is where you’d make a waffle right? Not to someone who does gibber?! I.e. ‘ waffle ’! But waffle I do and waffle with positive purpose! Last month, “a couple or 3” (questionable phrase I’ve known/heard for years!) of different things have been encouraging. "What, why?" Obviously (ahem) centred around my living with MS . The most notable was in the gym . I lifted a car equivalent! Not. I was talking with an instructor - Laura - and getting advice on how to do certain exercises better, that would help me improve my technique and therefore what I was aiming to…improve?! Without going into a ‘gym-bore’, they (the pointers/corrections/telling-o...

MS and Work - Realisation and Acceptance Being a person with multiple sclerosis, I saw my  MS  consultant ( Dr M E Duddy , whom I rate very highly) at the Newcastle RVI in November 2016 for my annual check. This was, what, my 10ish neurological consultation following my return to the North East 10 years ago. So, I went a bit prepared! Well, that’s being armed with some questions on paper and a pen! Stand back! Without detailing what the questions were, they were of course mostly about me and ‘my’ MS and some of the effects I experience; and a request to see some MRI scan pictures! I scribbled some answers to some questions at the time but afterwards I tried to put them into more of a mini-blog format (for my sake given the memory!) that I am going to share with you (not word-for-word). I always enjoy seeing Dr Duddy for my personal knowledge of how my MS is progressing from a neurological perspective other than what I KNOW personally, and he’s a good blok...

My exercise story? I am 37 years old and do have #MS. I also try to #exercise. I like it (gym weights mostly (I try!)) and feel some benefits of it too. Wouldn't go if didn't I suppose! When I was younger – teens really – I exercised quite a bit all be it strength focused, as some do at that age! Then came university and even though I joined the gym there every year of the 4, my attendance was really not worth the then total of twenty whole quid, yet better than nowt! Working at BAE Systems a bit thereafter, I resumed going to the gym and played football (not very well!) and did some kickboxing (I liked it!). So I guess I have had some form of exercise in my life to a certain regard. After BAE I went to what became Lockheed Martin – gym and football* stopped really. Wasn’t the same funability of 6-a-side availability; but I did pick-up a bit of eskrima that I enjoyed until the #MonSter started fighting back…! The job started to interfere with m...