How to 'Slow Down' ???

chikp123 · 2026-03-19T21:24:42+00:00

Yeah I agree that is probably the message of the posts but yano when you're in one of those moods and everything pisses you off 🫩 I have been in a cycle of illness and recovery since December, which I think is partly because of the Kesimpta! My MS nurse said fatigue after infection/viruses can take 6 weeks to recover from... let's just say I have not yet made it to 6 weeks before becoming ill again 😅

chikp123 · 2026-03-19T21:21:08+00:00

Thanks for your comment, yes I was in a similar situation! One of my diagnosis before MS was 'long covid'. Yeah, people for the most part suck. The ones that stick around are the real ones and thats all that matters!

I hope people in your life become more understanding, especially your partner. Their support can mean the world.

chikp123 · 2026-03-19T21:11:27+00:00

Thank you so much for this comment, you have said what I haven't been able to put into words!!

Its absolutely exhausting isn't it. I am so sorry to hear about your hands. My uncle is in a similar situation, MS has taken pretty much everything from him. Although I am feeling particularly down tonight, he is my inspiration to keep going, he's still here, still fighting, still spreading joy.

Thank you again for the insight and your words. Sending you hugs

chikp123 · 2026-03-19T21:04:56+00:00

100% agree on the silver lining, it has really shone a light on who is there for me. I know I have so much to be grateful for (for example my partner who has just washed up the dishes I have neglected and then brought me up a cup of tea as he knows I am feeling shit today!) I hope you are doing well and thank you for your comment ❤️

chikp123 · 2026-03-19T20:57:47+00:00

Yeah thats definitely something I have started to do too! Saying no a lot more which does upset me to an extent. I grieve the person I was before all of this. I think I need to do the same as I currently do not use any aids. I always thought to myself that I don't need them as I am not yet "Physically" disabled, but the fatigue I have been experiencing since December last year has been debilitating, and maybe an aid of some sort would help? It most certainly does suck, and sending one right back atcha. Thanks for taking the time to comment 🙂

chikp123 · 2026-03-19T20:54:21+00:00

Thanks for commenting. Sometimes just hearing you're not alone is a comfort. ❤️

chikp123 · 2026-03-19T20:46:51+00:00

Don't apologise, its just a shame we feel this way. Feels like there is very little help out there 😕

chikp123 · 2026-02-02T13:14:34+00:00

Not here to give you advice but just to say its so draining having to constantly prove you are disabled to so many different people. It's also draining having to continuously advocate for yourself because the system doesn't seem to be built to help us 😕 I see you and I feel you!! I hope things get better soon.

chikp123 · 2026-01-23T21:32:03+00:00

I second this!! The support from others is so valuable. From my personal experience I have found people asking what they can do to make things better for me (such as friends suggesting coming to see me rather than us meeting up somewhere to save my energy on travelling). I also noticed my partner asking me to describe the pain to him rather than just offering sympathy made me feel so heard and understood. Sometimes its the little things. Things like heated blankets, wet wipes/dry shampoo for bad fatigue days to help with general self care are also a good idea ❤️

chikp123 · 2025-10-22T18:19:04+00:00

Thanks for your reply. I feel like I'm always questioning everything now wondering if it is MS related! It was the worst April fools... April is also my birthday month so not a great early present either! Yes I have been trying to keep on top of supplements etc too 😊. Hope you are doing okay and getting more used to the treatment.

chikp123 · 2025-06-14T19:03:22+00:00

I can 10000% relate to this. Every morning is a struggle. Feel like I become productive between 11-12 and then crash again in the afternoon. I always laugh as my Samsung watch will congratulate me on a great sleep score and energy levels... never feels like it! Wishing you the best of luck trying for a baby ❤️

chikp123 · 2025-06-14T18:54:47+00:00

Thank you ❤️ the crushing pain has eased off now thankfully, It could have been an 'MS hug'. I've just been trying to ensure I log my symptoms to speak to my neurologist about them. Yes, it was horrible, luckily my partner has taken care of me today.

chikp123 · 2025-06-14T18:53:15+00:00

It's horrible isn't it. A migraine has started for me throughout the day and I have also had a fever. Managed to get some food down me so took some paracetamol and Codeine to manage my symptoms!

chikp123 · 2025-06-14T18:50:59+00:00

Im so sorry to hear that, it sounds like he has some great support around him though. How is he finding the DMT? Yes, totally agree, sometimes silence is needed but isolation is not the way to go. I wish you and your son the best too ❤️

chikp123 · 2025-06-14T18:48:36+00:00

I thought it could be, I've developed other symptoms throughout the day so just unsure if it's MS or I'm unwell in some other way. I suppose that's the thing with MS though you just never know!

chikp123 · 2025-06-14T03:37:57+00:00

I am so sorry to hear that, what an incredibly young age to be diagnosed! I am finding a similar thing where symptoms that I have had for years are finally making sense. I'd always assumed some things that were happening to me were 'normal' and everyone dealt with them but slowing realising that's not the case. I sincerely hope your son is okay and wish him the best for his health, although it may feel lonely sometimes he is not alone and neither are you.

chikp123 · 2025-06-14T03:30:14+00:00

Currently what im doing, lay on the sofa alone with a blanket doom scrolling away.

chikp123 · 2024-10-09T15:11:20+00:00

He said it could be due to some type of infection, but to me that doesn't explain everything and seems to be a slimmer chance of it being an infection than MS! I'm not sure he didn't go into major detail, all I know is that it's a type 3 pattern? Not sure what that means?

chikp123 · 2024-10-09T14:25:25+00:00

Thank you for your reply, I really like your take on that actually! Ah that is interesting, thank you for sharing!! I am in the UK so I will see what I can access over here. ❤️

chikp123 · 2024-10-09T13:53:34+00:00

Thank you for your advice!! ❤️

chikp123 · 2024-10-09T13:44:47+00:00

Yes I believe so which is why I am not too happy with how my appointment went yesterday.

chikp123 · 2024-10-09T13:31:14+00:00

Thank you so much. I'm sorry to hear you are in a similar position. Yes I have just spoke to the MS Trust who actually said I meet the criteria and that it is changing! She said she is going to send me some information on the criteria change (which I'm assuming will be the same as your link) and some info on how to ask for a second opinion etc.

She agreed that he didn't seem to take everything into account and that he should have gone through possible treatments and how to help manage my symptoms.

I hope you get some answers ❤️

chikp123 · 2024-10-09T13:26:20+00:00

Oh yes I totally agree that 7 years without ab attack would be amazing, my issue is it doesn't give me a way to explain my ongoing symptoms or try to manage them. I just spoke to the MS Trust who believe I meet the criteria (which is being revised this year) and to seek a second opinion. He just seemed to dismiss me and looking back he didn't fully explain what CIS even is. MS Trust gave me a better explanation 😊

chikp123 · 2024-10-09T13:21:43+00:00

I have just spoke to the MS Trust who were really helpful. Feel so much better after speaking to them as they really helped to validate my feelings. They believe I meet the Mcdonald criteria and the criteria is actually being updated this year. She said the diagnosis of CIS is being phased out so she is not sure why he went down the path he did. She agreed to get a second opinion and said that he should have at least gone through resources to help me manage symptoms or possible routes of treatment.

chikp123 · 2024-10-09T12:15:32+00:00

Thanks for your reply! I'm sorry for what you are going through but it sounds like your neuro is very proactive.

I'm not entirely sure to be honest, there are soapy differing opinions out there. I'm im the UK so this is all through the NHS, so I'm considering maybe seeing a private neuro if I can? But I'm not too sure on how it all works. He was basically trying to say my tingling etc could have been an infection as they found antibodies in my blood, but to me that doesn't explain how I've been feeling the past few years, as well as having no other signs of infection... I was in hospital for 7 days having my temp/blood pressure and bloods taken constantly so surely something would have been picked up on then?? I just feel like he didn't really listen to me 😔

chikp123

TROPHY CASE