annim 16/04/17
Last reply 1 year ago
Activity ideas during Lemtrada Infusions

This week is going to be crazy boring during my week of Lemtrada infusions. I am trying to find things to keep myself entertained as the office does not have cable and their wifi is horrible. I have logic puzzles & Sudoko books, books to read, books, games & shows on my iPad and a bunch of magazines too.
Does any have any other possible ideas of things to keep from loosing my mind?

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gates1989
1 year ago

Don’t forget that if you’re in a room with others you’ll probably be chatting a lot to, I slept quite a lot the last couple days! Other than that it sounds like you are well prepared! Xx


lilbird
1 year ago

@annum I think you’ve totally coverdale all bases there! I’ve just completed r2 & found that between the chat, eating & feeling whacked from the antihistamines I didn’t have much need for all the entertainment I took. Hope it goes well & doesnt drag on good long for you, good luck 🙂


californiadreamin
1 year ago

Do you have a really good Audio book to listen to? It’s great because you can keep your eyes open or closed.


gates1989
1 year ago

@lilbird hi! How have you found Lemtrada? How was your first year? X


matic91
1 year ago

Conversation is almost always entertaining 😀 Oh Lemtrada and the five long never stopping days 😀 how is you EDSS after the first year?


lilbird
1 year ago

Oh dear, the moral of this story is don’t post late at night without checking your post before pressing submit! I’ve just read my previous post 😕 I’ll swear this tablet “corrects” things into gibberish on purpose!

So that should have said @annim! Hi there hope your first day has gone well, you’re feeling good & not too bored yet 🙂

Hi @gates1989 I’ve found it pretty good so far thanks. Think I got off pretty easy with infusion reactions, lots of rash both times but not really itchy. New symptoms have been fairly minimal all year in between. Some slight improvement in existing ones. Right now I’m still pretty wiped out from r2 but quietly optimistic… Have you started yet? How’s it been for you?


lilbird
1 year ago

Hi @matic91 my biggest issue from the massive relapse that brought about my diagnosis was losing most of the use of my hands. The fact that they were taken so quickly & completely (& the realisation that this could happen without warning to various other funtions) was my main motivation for choosing lemtrada. I seem to be seeing slow steady improvement generally but I know I can’t be sure whether this is a result of the treatment or natural remition that could have happened anyway. My hope is that I have done as much as I can to prevent any similar events in my future! How far are you through the treatment? Are you seeing improvements?


matic91
1 year ago

hi @lilbrid i had my first dosis of Lemtrada in 2015 and after it i felt completely new 😀 i could almost run, rode my stationary bike more than 50km per hour and once again felt fantastic 🙂 however life is a never ending fight and so my enemy (MS) attacked me once again and after the second dosis which i had in 2016 my improvement isnt as great as by the first dosis, nevertheless the MR showed less active lesions in my brain so im happy with that 🙂 Of course Lemtrada is one of the strongest medications for MS but by some people it takes time to show results. I hope your hands will improve even more so that you can live as normal as you can.


annim
1 year ago

Hi Everyone! @lilbird another issue I having is typing a whole post and not hitting Done (I just did this about 2hrs ago so I’m starting again)
Thank you all for your replies I greatly appreciate them. Day 1 went well with the exception of running a temp of 100.8 near the end of the Infusion which they got down to 99.3 after 2hrs. Day 2 is going well with the exception of low blood pressure so we are watching that carefully. Keep you fingers crossed that everything continues in the right direction.


lilbird
1 year ago

You’re right @annim I’ve done that a few times & it’s really annoying especially when it was a really long post! I’m glad you’re getting on well aside from those issues, have you been drinking loads of water? It does mean awkward trips to the loo regularly but helps everything else. Hope tomorrow goes nice & smoothly 😊 have you had chance to get bored yet?


matic91
1 year ago

hehehe i wrote once about 500 words and then my computer broke down 😀 ill keep my fingers and toes crossed for you 😀


lilbird
1 year ago

Hi @annim how did the rest of your week go? Hope you’re back home resting it off now & you didn’t have anymore issues 🙂


annim
1 year ago

Hi @lilbird, I had a slightly rough day on Thursday. Within 15min of finishing Infusion without having the steroids I broke out in a rash so after pushing Benadryl into the IV and that not helping I had to have the full round of steroids over 1.5hrs. Afterwards I felt better than I had all day, unfortunately they had me do the full steroids & then the Lemtrada on Friday but it all went well.
@gates1989 & @matic91 you were correct about the conversation and people I would be there with. There was a wonderful gentleman there with me the whole week, he even brought me breakfast twice. Plus the office employees including the doctor and PA are so sweet. The doctor was very hands on even though he was extremely swamped with other patients, every time he walked by he would make sure we were doing ok.
Thank you all of checking on me. Now after sleeping all day today I’m hoping to have enough energy to clean the house and spray Lysol around. That’s all I know to do besides using hand sanitizer often. Any other ideas on what’s next?


matic91
1 year ago

nice to hear that you found some talkers 😀 time flies as you talk with someone thats a fact 😀


juliam58
1 year ago

I took loads of crosswords, a couple of books and intended to update all the contacts on my phone/ iPad. I never did any of it! What with chatting to the others in the ward, taking longer to go to the loo/ shower and visits from my husband, son and aunt the time just flew by……😂


lilbird
1 year ago

Hi @annim glad you got through it albeit a bit of a bumpy ride. I was pretty tired after both rounds & certainly wouldn’t have had the energy to clean the house that soon but I know from what I’ve read on Shift that others have managed all sorts! Have you read @tracyd‘s Blog?! 😉 I found energy came in fits & starts as I recovered interspersed with massive sudden fatigue. Pretty much the same this time, I’m starting to get back to “normal” but I know quickly if I’m over doing it & just have to stop & rest. How did you get on with your cleaning? 🙂

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