My names Nicola and I am 41 and found out I have RRMS.
I’ve still not processed that I have MS yet as I only found out in Dec 2022. I used to be able to run 10k a day previously from finding out but seem to think I might be able to run again someday but obviously not as far just round the block. I have a fear of driving now after someone went into me last June and the fear is there still. I have a fear of steps outside thinking I might fall. My balance isn’t great. Sorry for my rant and self pitying just do this to my husband and my eldest daughter constantly.
Thanks
Nic
I got my dx at about the same age as you. Life gives you an awful jolt when you get a live-changing diagnosis, doesn’t it? It can be hard to regain a sense of balance, either literally and figuratively. We don’t know what the rules are in this new world. When the ground has (so to speak) given way beneath us in such a dramatic way, ti is hard to feel confident about where solid ground lies now. I think it’s a bit like a mourning process: nothing will ever be the same again, the old certainties look less certain and the future feels full of hazards.
In other words it sounds to me that you are reacting perfectly reasonably to what has happened to you. Please don’t feel that you’re doing anything wrong or that there is a magic way to feel OK about this. The closest thing to a solution, in my own experience, is the passing of time. We are resilient creatures, and we do adjust and find ways to cope as we get used to things and find a way to live well despite MS. And there isn’t any steady state to reach: it’s a constant process of renegotiation, but making the best of it is the only show in town. Please be gentle with yourself as you go through your own version of this difficult process.
Nic
This is the right place to let off steam. It is completely understandable and reasonable have self pity and to rant a bit. You are trying to process some really big issues and changes.
Alison put it well in saying be kind to yourself. It is a big part of your life but it is not everything so try not to let it consume you.
Wishing you & your family all the best.
Mick
Thank you so much for this message. I do struggle daily knowing I have this but not processed It fully to realise I can’t do what I used to do. I do need to start realising this and be more gentle with myself.
Mick
I needed too blow off some steam. I’ve not processed this yet and still want I want to do like I did in the past. I say that to my husband I don’t want this MS to consume me but feel like it is.
Awww thank you same to you and your family.
Nic
Nic this is a hard illness to accept because it is not like you can see a broken leg or something. I have spms been diagnosed 14 years ago and still have trouble accepting this illness and get frustrated because I cannot do much now. I find it helps when you have people around you asking how are you today and you can let it out. I have some friends/or maybe not NEVER ask me how I am doing even though I struggle to walk and that upsets me. Find some good people to talk to and that care what your going through it helps. Take care.x
Hi Nic,
This first period of adjustment is really hard. What helped me most was to find out a bit more about MS so that I could be more in control and make sure I did the best I could for my health. I read up on some of the research, too, which gives some hope for the future.
On the running… I’m also a keen runner and I can imagine how you must miss that. You may improve though. Your MS is relapsing/remitting, which means you are not on a constant downward slope. There’s a post somewhere on Youtube by a neurologist, Brandon Baeber I think, describing a patient who went from quite a severe relapse to running a marathon. That was quite an unusual case, but it’s a varied illness, so there is hope.
In the meantime, would some sort of mobility aid, perhaps a stick, help you feel more confident and give you some freedom back?
One step at a time.
Thank you. It is a hard disease to adjust to and i don’t know when I start to realisebthis is me now this is my life. My husband does but then I’ll end up balling my eyes out. What medication do you take? Xxx
Thank you for your post It really cheered me up knowing that there could be hope for me I think I don’t want to adjust just yet and still live in my bubble until I have to come to terms with it all. I’m going to have to do some more research as I know there’s no cure for it I really miss running as it was my sense of freedom to let some steam off. I’m going to check him out thank you. Think I’ve just got this fear with everything! I one of those people that want to run before I can walk and I know that’s definitely not the case and I’m trying to adapt to what my body wants/needs.
Thank you again Xxx
Aw you have a right to be upset. Have you thought of asking your doctor for an anti depressant to help you by even if it is a small dose just to lift you up a bit. I have been given…pregabalin had to stop gave me nightmares, Baclofen had to stop could not stay awake. Now using co-codamol and ibuprofen but this still does not help that much. Have been given Tramadol and Diazepam but holding off on those at the moment as I am a bit scared to get trapped on those. It’s getting close that I will have to except I need to take them ahh don’t want to but this is another mental hurdle for me to get through. I don’t take any DMT as I don’t think that is an option for me now. If it may help you before you get to my stage I think I would take the chance (don’t forget YOU have the option to come of them if they are not right for you) nothing is black and white it’s your body your choice. x
If I don’t have my little teary moments think I would just explode with my emotions. My mums got secondary breast cancer so awaiting for my genetic test to see if I carry the gene aswell. Something else I’ll have to get my head around. Bless my husband I do feel for him. He just said have the breasts taken off but I’m more concerned about my daughters. I’ve tried anti-depressants before and found they don’t help me. I’ve had tramadol many years ago as I had teeth taken out when I was 25, felt high as a kite. I’m on Ocrevus but my consultant looked at me funny when I wanted to go on a herbal medication. I’m scared if I come off them what will then happen to me Have you had SPMS for the 14 years? Sorry for moaning again
I hope the following is of some help and reassurance. I’m a male nearing 70 who was diagnosed some 17-18 years ago with RRMS. I used to be a hill climber - Scottish Munros etc and OK hill climbing is way beyond me now and walking for more than 20 mins or so is definitely a challenge but I’m still active and enjoying life. Basically other than walking for more than 20 mins I do pretty much everything I used to do before MS.
I was never a runner but was both amazed and puzzled to learn that two of the runners in the women’s 4 by 400 relay team at the current world indoor athletics championships have MS! I’ve no idea what treatments they are on but from looking around I found one of them injects herself. Whatever they do it allowed them to be part of the GB bronze winning team. This might all be highly, highly , highly unusual but i hope it’s a useful illustration to show that having MS isn’t the end of life! (Also Look up the Nielsen twins - the two female world class runners).
As for me, I’m on a weekly injection of Avonex and in general terms I also follow guidance on diet, exercise and meditation/ mindfulness for MS. I originally got the guidance from a book and website called ‘Overcoming MS’ written by an Australian professor of medicine who has MS. The guidance seems to be pretty much mainstream now but e.g I’ve upped my consumption of unsaturated fats and massively decreased saturated fats. I aim, not always successfully, to do 30 mins of mindfulness/ meditation each day. As you have no doubt found out, stress is not good if you have MS! I think there is a general and useful little saying that in thinking about lifestyle and diet for those with MS ‘what’s good for the heart is good for the brain ( and CNS).
I remember when I was diagnosed and just how dark and frightening the world seemed. It is perfectly normal to go through a period of ‘grieving’ for a lost future and fear of what the future with MS might be. However, over time I sort of got used to my new ‘normal’ and ok there are days when I’m feeling rather down about having MS and the Avonex injection leaves me feeling a bit rubbish for the next day, but overall I’m enjoying life. My wife and I enjoy holidays in the Scottish islands , and e.g some 7-8 years ago enjoyed an Arctic cruise on a small ship watching polar bears, walrus, various whales and birds.
Might even venture to Finland next year to watch bears although I must admit that might be beyond me ( interestingly and sort of amusingly I find my self making excuses like ‘ well I will be in my 70s so I shouldn’t expect to be able to go bear watching- there is a bit of walking involved and spending all night in a hide waiting for the bears).
I don’t use any herbal medication/ supplements but do take Vit D tablets plus Alpha Lipoic Acid (ALA) - there is a current trial looking at the use of ALA for MS and I thought ‘ well why wait for the results, it’s a widely available supplement from high street stores’.
It is very scary come off a medication but you need support with that. Sorry to hear you have your Mum, yourself and your daughter to worry about as well. Stress is not good for MS. My Dad was diagnosed with non Hodgkin Lymphoma just before Christmas now started Chemo and I am worried he won’t make it. We all try to look on the bright side of things but it’s hard life is hard. Yep have had SPMS for a while now I use crutches/wheelchair as my legs don’t always want to work. It’s all down to the lesions in my brain/spinal cord plus degenerative disc disease ah sounds like I am falling to bits . If you ever feel like venting out to someone else just send a message. Well done husband for being understanding hey I am 56 feel like 76 . Good luck with everything.
It really cheered me up knowing that there could be hope for me 
I think I don’t want to adjust just yet and still live in my bubble until I have to come to terms with it all. I’m going to have to do some more research as I know there’s no cure for it 
I really miss running as it was my sense of freedom to let some steam off. I’m going to check him out thank you. Think I’ve just got this fear with everything! I one of those people that want to run before I can walk and I know that’s definitely not the case and I’m trying to adapt to what my body wants/needs.
Have you had SPMS for the 14 years? Sorry for moaning again
. If you ever feel like venting out to someone else just send a message. Well done husband for being understanding hey 
I am 56 feel like 76 
. Good luck with everything.