Navigating the MS Maze: Feeling 'Lost' Through the System

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Does anyone else feel slightly 'lost' in the system? This is what this video is about..
For 13 years I was on a blinded trial for my Multiple Sclerosis for a treatment of Lemtrada. Although so grateful for this treatment and the doc's and nurses on this trial, now I feel a little lost.
It's not that I desperately need help, but I miss the social interaction side of things that I had when I was on the trial when I could go in and get the very much needed support and by god were they absolutely amazing. I couldn't wish for a better team of people and I'd go as far to say as it felt like a family to be honest. I miss it so much. Maybe a huge part of it is nostalgia, going through something for so long, with the same nurses and doctors is a huge thing and it becomes part of your life. Maybe to me, even today I find it a huge shock not to have that support mechanism there anymore, especially as I deal with a lot of depression.
Anyway this is my story of how I feel. The team were amazing, I cannot fault them, but once you are 'out of the system' it can feel a very isolated place.
I hope everyone is well and looking forward to Christmas x

Опубликовано:

18 дек 2022

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Комментарии : 14

@lauraironstalksms Год назад

My experience from being on a 13 year blinded trial up until now, sometimes feeling a little bit lost in the system - video was recorded early Nov 2022

@lindairons8002 Год назад

I hope you find the support you need. So proud of how you've dealt with the difficulties you've experienced since your MS diagnosis. Stay strong. Love you. X

@lauraironstalksms Год назад

Thank you ❤️. Love you too x

@frankgradus9474 Год назад

For me MS has been a no-win situation since the time it robbed me of walking, or limping to be precise. When it robbed me of cycling, hiking, open water swimming, 'freedom' skating I needed time, but somehow came to terms with it. Now MS has been robbing me of my dignity. Therefore, each and every person doing great or just fine despite having MS is a ray of hope/light/comfort to me. "Skating 100+ km Distance on Lohjanjärvi", RU-vid - you might want to check this out to relate to what I mean by 'freedom skating'. All the best to you !

@lauraironstalksms Год назад

I watched the video, it looks amazing. I used to figure skate so I know that the feeling of being outdoors on this must be both tranquil and exhilarating. I wonder, did you ever skate on this? I'm sorry that MS took all the things that you loved to do, the awful fact is that the odds are that MS will get progressively worse at some point for everyone, sometimes it's just a faster process for some. MS can have a huge impact emotionally on us, I know it feels like so much of us 'disappears' with this condition but we are all worth a great deal in this life even if some days it doesn't feel like it. Thank you for sharing the freedom skating it made me smile ⛸️😊

@ZoyaStreet Год назад

Thank you for sharing this perspective, it's so interesting to hear this contrast between being monitored as part of a clinical trial vs. experiencing more general NHS care in 2022. I often feel confused about what services are available and how I am supposed to access them. Many organisations are listing things on their websites that no longer exist due to funding cuts!

@lauraironstalksms Год назад

Hello, yes I think that being on a trial is definitely more of a structured process and more organised for an individual in the fact that care is always there because I think that's part and parcel of the trial, i.e bloods, edds assessments, monthly monitoring, support etc. It's all I've ever known as I got diagnosed and then went onto the trial after 7 months. Not great about the websites not being kept up to date, I haven't had any experience of that myself but interesting to know..I wish you luck on your journey and hope you are able to access the support you need.

@ZoyaStreet Год назад

@@lauraironstalksms Part of me wonders if your local hospital has a structure in place that they can clarify for you, even if it's just "we see you once a year for an MRI and examination, unless you have a relapse." At least then you would know, rather than being left unclear about what you are supposed to do at this point.

@MysticalDreamFire Год назад

Very interesting 🤔 I felt this way after them finding my brain tumor while looking for MS 2021. Then after not alot of supports However I'm in Ontario Canada. The paper reports are interesting we don't have those here.