marcyg921 27/02/17
Last reply 1 year ago
Does it ever get any easier

So last November I was diagnosed with MS and even though I knew I had MS months prior to that I always felt once I got my official diagnosis things would get easier but it didn’t. Then I thought once I started treatment it would get easier but I had round 1 of Lemtrada and I’m still struggling to move on. I’ve been very open about my condition and tried to get on as normal but its still constantly on my mind and at times makes me depressed, I don’t think I’ve actually taken the time to sit down and talk about this condition, mainly because I’m not sure how they can help. Now I’m starting to wonder on if I went back to work too early, I only work 4 hours each day but after just 1 week there my knees felt weak, I was limping all over, I was tired and I even bursted out in tears. Is MS something that I can actually move on from and does it ever get easier

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mmhhpp
1 year ago

Mmmmm…… this is your best time! Try to be optimistic , i know it is hard, it is hard for me too…. ms will always be there you just learn how to juggle each step….you need to be strong ! Tough illness…..and those around us dont have an idea of how much sh… we cope with! We should all get a medal at the end of each day!!!


stumbler
1 year ago

@marcyg921 , this is still too recent for you. It usually takes about a year to go through the gamut of emotions to finally be OK with the diagnosis.

So, don’t be so hard on yourself and take each day as it comes.


cameron
1 year ago

@stumbler is right. There is no one moment when you get over the whole MS thing. See it as a jigsaw puzzle and sometime soon you’re going to fit the first pieces in. Once in, they’ll stay but right now your head is all over the place and you can’t even see the pieces! It DOES get better, but most of us have needed lots of support, especially from our nurses, i.e. lots of conversations, discussions and questions answered. What support are you able to access?


marcyg921
1 year ago

@cameron The main support I have is my MS Nurse, this forum and my old college teacher who also has an auto immune condition, I just feel so exhausted and MS is constantly on my mind, I feel like I need to talk to someone about it but not sure who and what I would say


dreamcatcher
1 year ago

@cameron is right it does get better with lots and lots of support. I went to therapy and my therapist has helped me a lot. Now I am in pain management and they are going to help me learn how to deal with pain. Hope you are able to find the support you need. Good luck.


stephz
1 year ago

Hi. I was also diagnosed last Nov. Here are some things that helped me. See if there’s a MS Social group near where you live – talking to people with MS in person has helped me so much. I also started counselling 3 weeks ago – never done this before but it made a huge difference to my overall wellbeing, as well as having a space to get all the crap out that you don’t want to share with someone close to you. I said that I would write a blog post for an online community of disabled & chronically ill academics and during this I realised that writing everyhting down (and particularly hitting a keyboard) was quite freeing. I deleted most of the things I wrote the following day but I might keep some of them to see how I progressed along.
For me it’s day by day – fine one day then the smallest trigger and I’m off – either crying, pissed of or juts angry – it was hard to be ok with all of this being ok. Another thing that helped my overall wellbeing was to turn Sorry into Thank you – inspired by this post https://brightside.me/article/stop-saying-sorry-if-you-want-to-say-thank-you-a-seriously-insightful-cartoon-57255/ and some other mental health posts I started reading.


cameron
1 year ago

I can only suggest what worked for me: you’re presumably going to start treatment soon, or at least start considering the treatment options..? That’s the starting block for finding out how you’re going to manage the condition. Once you’re in possession of the facts around the various drugs, you can start making your plan. It was stressed to me the importance of keeping a healthy routine, so I decided to set down how I was on a daily basis in a journal. As I recall, I had about three months between the first and second post-dx consultations, because I was recovering from a major relapse and they needed to check up on me/do bloods etc. I made a list of symptoms, then thought hard about the severity of each and how that varied day on day. I had about five sensations/motor symptoms and I reckoned that there were 4 degrees of severity for each. I coded them A-E and 1/2/3/4/5, with the key written at the front of my diary. Then at the end of each day I’d sit down with a cup of tea and (without thinking it too much) enter the day’s results. It was so interesting, because after a few weeks I began to see patterns. Symptoms correlated more or less with the emotional and physical stresses of the job, but there were other discoveries too. I had proof that some symptoms had actually gone, or at least I wasn’t noticing them. It was also good for self-discipline: concentrating on precise details of the MS for five minutes a day gave me ‘permission’ to not think about it at other times. I stopped my minute-by-minute obsessing. I was able to report all this at my neuro appointment and it was the basis for much-needed reassurance I was given. I took the neuro’s suggestions back (advice on exercise levels, sleep etc) and started to work to those suggestions. This fundamentally altered my daily living, but to be honest, I was only too pleased to have a plan! I did the daily diary for about seven years, at which point I realised I didn’t need to write anything down because I was 100% self-aware.


Anonymous
1 year ago

Hi @marcyg921 yes, it does get easier. I’m 11 years in and I’ve totally found my groove. I continually tweak that groove though to see if I can feel even better and stronger. I’m drug free and use food, supplements and yoga as my management tool. It doesn’t mean I won’t ever use drugs but I guess it’s a safety net for me. I’m lucky in that I’ve stopped working completely, is that an option for you as it will take alot of stress away? I feel mentally and therefore physically good because I feel in control of ms – ms is different for everyone and everyone is different! Check out my fb page if you like, for some alternative tools to help – https://www.facebook.com/groups/Controlms/
The power of positive thought is amazing 😉


tracyd
1 year ago

@marcyg921 big virtual hugs to you, does it get easier ? I got used to it! Having Lemtrada and knowing that I was giving MS a swift kick in the goolies really helped to give me a feeling that I was taking control of it.
You have a friend request, if you need someone to put the world of MS to rights with then I’m happy to share contact details

(or if you’re at Reading v Newcastle game on Tuesday then I’m in the away stand up in the gods)


marcyg921
1 year ago

Thanks everyone for the kind words, feeling so much better today so might of just had an off day, @vickivictoria I’ve requested to join the group you linked me definitely interested. @tracyd also thanks, I’ll keep that in mind, hope Lemtrada works as well for me as it did you.
Guess I just need more time and to take it one day at a time until I eventually find my groove. Had a good chat with my old College teacher and she just told me straight, my body has changed and it’ll take some time to get use to it and to obey my body and not feel guilty whenever I can’t do something, and I should be proud that I gave it a shot to begin with. Its gonna be a long hard road (harder than I ever expected) but I know I’ll get there eventually. She also recommend I read this, its called the spoon theory as it really makes helps to understand what is going on.

The Spoon Theory written by Christine Miserandino


(In case anyone wants to read)


Anonymous
1 year ago

@marcyg921 welcome to my fb group take what you need from it. I’ve seen the spoon analogy it’s sweet. There’s so much out there, so, be careful what you read and please know you probably won’t have every symptom. 👍🏻


red-suzuki
1 year ago

Fantastic spoon analogy…I think somedays my spoons are plastic….but hey ho. all the best on your road forward.


kinga
1 year ago

I know it sounds bad but….when I see my friend in the last stage of breast cancer undergoing chemo…I think to myself that MS is not bad…At least we have more time..
Im still undergoing a diagnosis, one more box needs to be ticketed for theofficial diagnosis. I read so much about MS and I joined so many groups, every day new research papers etc
But researching and reading makes me think about MS all the time! So I think its good to slow down and to read that much

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