My #MSFriday musings are mostly that I'm still here, surprisingly functional albeit with a tendency to hit cognitive fatigue in a way that makes after 2pm work somewhat challenging. But still here, still standing.
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#MSFriday
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Posts tagged #MSFriday
Disease Modifying Therapies are medicines of various kinds. I had an Immune Reconstitution Therapy to shut my immune system down & regrow it.
Cannabis & cannabis products help some people with pain/muscle spasms & mood. But it doesn’t affect the MS itself (& smoking it is very risky)
#MSFriday
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A family friend who has #MS has never had a DMT, but has taken cannabis in various forms for years
Her choice. A choice I’d never make. But it’s a case of choose your poison, I think…
#MSFriday
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#MSFriday musings. My legs are being very MSy this week. Feeling like I used to after running a 10k, whereas arguably I haven't even run 1km.
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My #MSFriday musings on how my condition impacts on my values. It's important to me that I'm reliable, dependable, that kind of friend, colleague etc. It's a hard balance, because it's tempting to swing into committing to nothing so I don't let people down. It's something I'm still working out.
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Local hospital is reducing MRIs to every 2 years instead of annually & only sending MRI result letters if there’s been a change/concern
What’s the position in your NHS trust if you’re in the UK?
#MSFriday
#MSLife
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My #MSFriday musings are on worry and change. In some ways if someone asked me how is MS affecting you, I'd shrug it off breezily with not very much.
Reality is I haven't run or cycled since August because I have to balance the volume of dog walking and can't add those in.
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My #MSFriday musings are about the oddness of MS fatigue, the helpfulness of categorising it as physical, cognitive, social, emotional. Cognitive is my killer. It's been a week where I'm trying to think about and apply intentional rest. Remembering cognitive rest is the goal. It's a journey.
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Today's #MSFriday musings are on the contribution of chronic stress to this disease. I'm so used to just living with chronic stress / depending on it to get me shifting on things that it's very hard to change my reaction. Stress has become a reaction I realise I've sought out rather than avoided.
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I haven't done #MSFriday musings in a while. All the navel gazing has been part of my consciousness that chronic stress, permanently raised cortisol levels are really bad for MS. I am doing a huge conscientious effort to deal with this. It's a lot, and it's not going to be "fixed" quickly.
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OK so far, we had a very quiet day yesterday (which is how we like it). When it's light I'll take the dog for a walk, but as it's still cold here we'll probably only go round the block.
#MSFriday
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My #MSFriday musings are a sense of something I can't name. Curiosity? Relief? Tentative optimism? Because I have a stinking cold and it is not accompanied by exacerbation of my MS symptoms. I don't have drop foot, headache, chest tingles, cramps, ricocheting pins and needles. I just have a cold.
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How’s things, MSers?
Very much taking precautions to avoid the flu bug that’s sweeping along here. Especially when the schools break up next week. Would be the last thing I need 😬
#MSFriday
#MSLife
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My musings on #MSFriday - I've been in work meetings all day which have been talking about how you push yourself. Reflecting on the non work things I've done in the last two years with the clear goal of keeping whatever I can of MS impact at bay.
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My #MSFriday musings are mostly a reflection that it's really hard work doing work on yourself. Identifying triggers, reminding myself about these so I recognise what's going on.
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“No assessment has been made” 🫥🫥🫥
#MSFriday
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My #MSFriday rant (didn't feel very musingesque today). If you're going to ask how I am and when I reply that I'm really really tired you're then going to tell me how tired you are, just don't. Let's not have that conversation.
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#MSFriday
Another annual MRI of brain/spine done. Another 45 minutes in a tube. Oddly, I now find it so relaxing, I could almost doze. 😏
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My #MSFriday musings are mostly pondering whether the fact I haven't heard anything from my September MRI means all's fine or if it just means nobody has looked at it. I guess I'll contact the MS nurses again.
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This clip from @theMSguide.com touched a nerve this morning. My neuro can seem dismissive of symptoms like fatigue & cog fog. I know I do pretty well for an MSer but there’s so much he doesn’t see. I get a different attitude from the MS nurses fortunately.
#MSFriday
youtube.com/shorts/uZRIX...
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It’s #MSFriday & I’m reminded that MS is all about enjoying the good days & accepting the rubbish ones.
Life has to be taking it as comes & building in rest & recovery time.
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Ugh. Fatigue. Wading through liquid lead treacle
#MSFriday
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My #MSFriday musings. I contacted my MS nurse this week to notify of a new symptom. Filled the nurse in on a few other things. New symptom appeared in July for the first time and I reported it then. We treated it as a one off, which is fair. It's patches of odd sensation across my back.
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#MSFriday
How are we doing, gang?
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My #MSFriday musings are not coherent this week. Life is a struggle and a juggle and reading articles suggesting chronic stress is pretty unhelpful for this health condition makes me a little sad and regretful. But I am trying, in a systematic focussed way to keep myself as well as I can.
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On #MSFriday my musings are about putting MS in a box. This week I <nearly> forgot to do my kesimpta injection. It's a once a month, same day of the month, and normally front and foremost in my mind. Did it at 9pm when I finally remembered. It's nice that it's forgettable.
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2/2 working. I had to advocate hard.
And I’m glad I did.
Now, no MS neurologists at my hospital at all. I wonder how treatment discussions are going?
Anyway - keep an eye on the CAR-T trial
Have a decent #MSFriday !
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#MSFriday
Lots of facial fasiculation today, mes amis
Stressful week = may twitching eye & chin muscles
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My #MSFriday musings are largely of surprise that I haven't ended up in a small unhappy pile. It should be pleasant surprise, but in some ways it's simply surprise. I've been so work busy and work stressed and doing all the dog walking I thought I'd have hit a wall by now. I haven't.
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