What do I do?

On By kimc91In #chronic illness, #mumlife, Uncategorized

What is it about not writing that makes me feel like I’ve failed?

I have so much floating about in my head but then getting it all typed up and into words just isn’t working at the moment. I know exactly how I’m feeling but I don’t have the words to express it. What does that mean when I want to blog?

I’ll start with something thats been consuming a lot of my reading time this week and that is the news of potential MS treatment HSCT. So let me get my brain around this, I have chemotherapy, a treatment for cancer patients, a treatment I see my brother suffering horribly from daily. Now this should kill off some stuff and make space for something else (technical speech as always LOL) and POTENTIALLY halt the progression of the MS. There is also the smallest chance I die. I don’t know if its just me but that scares the hell out of me. I would lose all my hair and suffer quite badly for something to maybe work for a while.

I understand that I’ve explained it in my way and it all comes across negatively and I really feel bad about that but that is honestly how it is stuck into my brain BUT from what I’ve seen most of the people who have undergone this treatment have nothing but positive feedback about their MS, they are living a better quality of life now and that truly is amazing. If I could have 1 day back pre diagnosis that would be a beautiful day, so maybe this needs some serious consideration.

Don’t get me wrong this hasn’t even been offered to me, I might not even be eligible but I haven’t thought of much else since all the articles about this have popped up. I don’t think I’ve ever been so torn. How can I be a Mum to my kids while going through the treatment? I have so many questions but sadly there aren’t really any answers.

IF this worked it would be the best thing. Getting a piece of my ‘old’ life back would be so special.

IF this didn’t work I feel like the impact on myself and my family would be huge. Going through all of that then you are slammed back down to earth with shattered expectations and possibly less hope then before.

This really would be the biggest decision I’d ever make if it came to it and I struggle to choose a movie let alone something like that. I think it has actually stressed me out this week, I can’t seem to get it off my mind. What would I do??? What would you do??? 

As you have probably noticed I’m setting this whole scenario up in my head. My neurologist has said this is an option for me now and I must pick what I want to do. My whole brain goes to mush (if thats a thing) Of course I want to be better! Of course I want a better quality of life! But its such a huge thing to go through with no guarantee.

This is giving me a headache just writing about it now because I’m thinking too much into it for now I think. I have just noticed that I’ve basically had a rant and that is my blog for the day. (emoji’s would work well with how I feel today!)

If you have any opinions on this subject do let me know because I’d love to see this in a different light perhaps. If not that is fine, I hope I haven’t made you hate me for parts of negativity in this which I am sorry for but its just how I feel.

I’ll leave this there and I would just like to wish you all well and I hope you have a lovely weekend.

Kim x x

Colorful question marks on chalkboard background. Close up.
Colorful question marks on chalkboard background. Close up.

19 thoughts on “What do I do?”

  2. Hi Kim. If your concern is about the chemotherapy meds, I’ve been getting them for years. They don’t improve my symptoms, but they have helped keep my progression (I have PPMS) in check. While the symptoms in my right leg, which started in my foot and is now up above my knee, have slowly spread, it has taken over ten years for them to reach that level and they have not spread to other areas. So all in all I’m content they have been doing their job.

    As far as the HSCT is concerned, I would definitely consider it if my neurologist felt strongly about it. It is not FDA approved in the states, however, so that really isn’t an option for me. Hope this helps

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    1. Yes thank you! I feel like I’m not getting periods where I’m ok it’s always there and it’s moving along from rrms in my opinion so if this ever came up I just wouldn’t know what’s for the best!

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      1. Personally, I wouldn’t consider chemo until it graduates to a more progressive stage. I was under the presumption that there are other meds better suited for rrms/ I would not know because I was progressive from the start

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      2. As it stands this treatment only works for rrms I think!! I just see chemo and it’s affects daily so to me it’s crazy to put myself through that when I don’t NEED to but I don’t know it’s hard! There will be more meds I’m sure but this has really consumed my mind it’s been over the news and in articles in the U.K. This week and it just gets me thinking

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  3. No one would ever hate you, and everyone needs a place to express their feelings. It’s good you wrote this post. I can’t give much advice, because I don’t know your entire situation. I do know this. I’m facing possible serious surgery, and I’m scared to death. I can only imagine what your going through with your illness. It has to be unbelievably tough to fight every day. I wish you the best. Never give up hope.

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  4. Kim I completely understand wanting to write, but having so much on your mind it is hard to put it all into words. I started have a time line kind of table I use before I write a blog. It helps to keep my mind focused and on track and when it goes off track, I just use those thoughts for another post!
    I have heard a little about the chemo drug but it has not been approved in the states, yet. I do recommend you making 100% sure it is something you are comfortable with before doing it. Personally I feel when the side affects are worse than the symptoms, it may not be worth it. I would also recommend waiting until nothing else is working and symptoms are progressing rapidly before trying anything extreme. You are a sweet and strong person and you will make the right decisions. The important thing is, you make the decisions for your health that you are comfortable with! It is your health and your body, you know your body the best!!!

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    1. Thank you Alyssa, you are right I feel the same about the symptoms being worse meaning it might not be worth it but who knows? Like I say it’s not even an option right now but I just want some clarification if it ever did pop up! As for my writing I think I will have to take a leaf out of your book and get a schedule of some sort in place. X x x

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  5. Huge decision! When I have so many conflicting thoughts about a big issue I write out a comprehensive pros and cons list, not just on “what if I do this” but also “what if I DON’T do this”. Helps me get some clarity. All the best with your decisions xx

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