Hello everyone, I’m Jacob, age 28. I currently live in Edinburgh with my two cats who are the only things keeping me going right now. I was diagnosed with RRMS 10 days ago, 18 months since my first major relapse landed me in hospital. I’ve been off work since April because things got so bad I couldn’t keep up with it at all & it became clear the stress was making things even worse.
In retrospect, my MS symptoms go back much further to 2014 after I had glandular fever and I was just fobbed off for years. I’m currently feeling quite alone in all of this as I don’t have any support from my family and because of how bad my fatigue has been over the last few years, a lot of my friendships have faded away too.
So yeah, I just wanted to join to feel more connected to other people who understand what it’s like.
Sorry to hear you are having a rough time, try to listen to your body, pace yourself so that you have the energy to do important stuff. There are many people here who can identify with how you are feeling.
sorry to welcome you if you get my drift. its hard to get used to the label and the confines of MS remember though you hold the key to release.
cats i love cats i had 2 one wa 18 when she passed and i sadly just lost cookie who was 14 or 15 to a rare cat disease. I have my little lucy dog for now and she gets me up each morning.
acquaintances come and go sadly but family should be supporting you, do they realise how you are feeling? If not talk to them honestly.
fatigue is hard but its learning not to push yourself and dont set the bar too high.
It takes a time to get over relapse. again dont be too hard on yourself. you have made the right step by reaching out. they are a lovely bunch on here, and we meet newbies sadly all the time.
there is life with MS IT just takes time to get used to it all. x
You’ve had the bad luck to be diagnosed with MS at a really bad time. Covid and Lockdown, even as we slowly emerge from Lockdown will have had an effect on your diagnosis experience.
You also seem very young (from the perspective of someone in her 50s!), especially if you’ve had MS symptoms and relapses since 2014. I had my first MS relapse at the age of 30 so started the journey almost 10 years older than you.
Glandular Fever (aka Epstein-Barr Virus or EBV) is a frequent precursor to MS. Or rather having the antibodies to EBV can be a contributory cause for MS. There are many potential contributors, one of them is geography, Scotland is the world leader in numbers of people with MS. This doesn’t mean that every Scot who’s had glandular fever will get MS, it’s just a couple of the very many possible factors that may have caused your diagnosis.
This is a friendly and helpful place to find yourself when first diagnosed. Especially if you feel somewhat disconnected from other people.
Your next step will I imagine, be to decide on a disease modifying drug (DMD). It’s obviously your choice whether to take one or not, but as their job is to reduce the number and severity of relapses, it seem sensible to take one. Reducing relapses also means future disability is reduced as less damage is done to your nervous system.
Your MS nurse and/or neurologist will go through the options available to you. Generally they might offer you a number of options, run through the benefits and risks (aka potential relapse reduction rate and possible side effects) then ask you to ‘pick one’. As a heads up, have a look at MS Decisions aid | MS Trust
Best of luck
Let us know if you have questions, thoughts, fears, whatever. We’ll try to help.
Oh no, I’m sorry to hear about your cats I lost a cat to leukaemia just before her 2nd birthday 3 years ago.
Sadly my family don’t do listening and they don’t do support, toxic and dysfunctional would be an understatement. I’m honestly better off without, I moved away from them years ago for the sake of my own mental health. The constant drama, anger and controlling behaviour were far too much and they still haven’t accepted my sexuality either so that has added an even bigger rift between us. It’s still hard not having something which most people take for granted. My sisters are more supportive, but they’re so busy with their own lives and I’m the oldest so I wouldn’t want to burden them. One of them sent me the Overcoming MS book which was nice of her. They might be far away, but at least they do listen when we get the chance to talk.
I’ve always had this kind of toxic need to be productive and I give myself a hard time if I feel like I’ve wasted my time or haven’t done enough… so learning to be kinder to myself and not feel guilty is a gradual process. I’ve learnt that pushing myself just results in me getting more ill and being able to do even less, so I have started pacing myself. It’s still really frustrating when I can’t even get what I used to do in one day done in an entire week!
Well, you’ve come to the right place… it’s good to connect with other people who might understand a bit better what you’re having to deal with. And there is no such thing as a stupid question here! Until you’ve sufferered from fatigue, you don’t really understand that it’s less being ‘a bit tired’ and more ‘being hit by a truck’…
Hi i am sorry about your family really. I had an amazing family life but when my mum died in 2016 the support seemed to get lost with grief for her. I have 3 brothers and 2 sisters. my middle bro above me we support each other he gets me and i get him.
I really find it hard in this day and age that people dont accept their children for no matter what reason it is.
we are who we are all born individually. My eldest daughter came to me after she was married 12 years and said “mum i am gay” and i am leaving my husband as i have to be true to myslef. she had 2 children as well. so i just said to her, ok but be sure you dont rush into anything ok, wait for about a year and see where your preferences lie in a partner. If you get my drift.
You wont believe this but the person she eventually remarried is transgender i have known him since they met as a women. so there you go. Nowt fazes me lol. He is one of the nicest men you would want to meet and works in care. He isnt full trans yet as its a lot to deal with with regard to operation and he has very bad RA.
I would never dismiss one of my children for living thier life their way.
Your sisters sound really cool and supportive.
It is hard for you but i always think everyone of us is born with little or no expectations as to how it will all pan out. we have to deal with the poop we get lol. I have lost friends to terrible cancers younger then me. I lost my husband 2017 suddenly and had to shift sideways to survive the fall out.
Over time i have learnt to adjust, i found why fight it all its just going to be wasted energy. energy which i need. I have learnt how to get around things too its quite a skill lol. being Army trained i.e. not as a soldier but as a fierce administrator who was always very strict on things being in their place, when OT came they learnt more off me ha ha.
Things do settle down overtime honestly its just just all such a learning curve. you seem a very intelligent person and kind too so is there anything you can do at home, work, or write a blog i wrote my blog it helped. You have experience in family matters its amazing how much you might be able to help others.
weirdly enough one of my other cats i had year back died of leukemia.
anway its lovely to chat. xxx
I’m sorry to hear about your mum and all of the other losses you’ve had. I lost my mum in 2010 and it was really hard as nobody ever really spoke about it or dealt with it properly. And when something like this happens, I still feel like I need to tell her so she can give me a hug and say it will be okay. Everyone else in the family is really emotionally closed off, so I miss that kind of care a lot.
And you’re right, everyone is who they are and people should be more accepting. I used to feel uncomfortable with myself because of how they felt, but now I’m just like it’s not my problem… it’s theirs. I’m happy with who I am and if they don’t accept it then they can get lost!
I am actually a writer, I was doing a bit of writing work a couple of months ago and I could work when I wanted so it was great for fitting around my symptoms. I had to put it on hold after my last relapse as I wasn’t keeping up and the quality went out of the window with brain fog, but I haven’t given up, I’m just on hiatus and I will be back on it before long!!
I’m originally from Kent, I have asked myself whether this would be happening to me if I’d stayed down there where there’s more sunlight… but I read that your geographic risk doesn’t change if you move after a certain age. It’s such a coincidence that I’ve moved to a different country where this disease is a lot more common and then it turns out I have it. I think Edinburgh is definitely one of the best places for treatment with lots of promising research & they’ve spoken to me about trials which I’m up for.
@Fracastorius Definitely, when I’m just tired I can do stuff. Fatigue is like being hit by a truck and stuck under the tyre!
Edinburgh is indeed a fabulous place to live, for MS and just generally (my best friend lives there!)
Given that Scotland does have so many MSers, it means that there is a huge amount of research and the expertise to give you the best care. (Not that Kent isn’t a nice place, nor that you can’t get decent MS care there!!)
thats the way to do it hun. Its their problem not yours. they are loosing out in the long wrong, but time changes people, they will get used to it the end. Its a perception on how people should be in their eyes, but all of us may be born similar but doesnt mean we will all be the same, how boring is that.
I got into writing my blogs and wrote a couple of stories. My grammar is terrible and i write what is in my head lol…but i enjoyed it. I find i write so much now on forums that i am too tired to do much blogging lol.
this is my story if your interested.
There is a lot of stuff on there.
Yes i miss my lovely mum and my dad, they are together now. I would love a hug from them both. Mum thought i had M&S she was italian and could never say MS lol. still she must have viewed me as QUALITY LOL.
I have so many lovely memories of her. she was truly amazing.
My lovely mum.
Hi Jacob, I’m new to this site & may rabble on a bit.
for years I’ve known that something was quite right.
my older brother as M.S has had it for over 40 years
I’ve had things going wrong over the years but always
put it down to something else until about 3 months ago, one morning
as I stepped out of the bath had a pain shoot across my lower back
& thought I’d put my back out yet again. after two days my back was fine but I notice the tingling in my fingers had not stopped, in no time
I had tingling I’m my hand, the lower part of the legs, in fact, most of the symptoms associated with M.S.
it took two weeks for a blood test, then another blood test & another two weeks, now I got to wait until November to see a Neurologist
I just keep thinking to myself, how long will I have to put up feeling like
without it being encouraged? It may sound strange but I just need those around me to know, so that they can understand why I’m the way I am. I telling my partner about it all the time, must be driving them mad. I’m sitting here tingling & drained.
I think this site is going to help, because others can understand how I’m feeling, I hope.