sonia_tailor 02/05/17
Last reply 9 months ago
Student and Alone

I’m 22 and was diagnosed around 3 years ago, but experienced symptoms for about 5-6 years. I was told I had MS just before my 19th birthday through a letter in the post. No warning, no phone call, no explaination or help sent with it. Alone and worried I googled about MS and of course all the symptoms came up – frightening as it was, I was just told to remain positive. But no matter how much I remain positive about everything I still feel like there’s something missing. Does anyone else feel like they sometimes get a bit lonely? I don’t know anyone else with MS and even though I have supportive family and friends it just feels like there’s still a bit of emptiness in regards to my MS. No one truely understands what it’s like to have MS unless you have it yourself. It’s so difficult explaining my symptoms especially fatigue to others as they think I’m always being lazy or over exaggerating and just need to ‘get over it’, I mean there are worse off people in the world? It would just be nice to have some of the caring attention on myself when i’m weak/fatigued rather than being reminded that other people have it worse in the world :/ does anyone else experience that? I feel guilty for the symptoms I get, and I feel like I always have to explain myself so that people don’t think I’m making things up. It would just be so nice to speak to someone who is going through the same as what I am going through so that this void i’m feeling can go away .-.

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vixen
9 months ago

Hello lovely, wish I could reach our right now and give you a hug. I was only diagnosed a few months ago and I’m older than you but I really understand how you’re feeling. One real positive is that in terms of research and development things are really hotting up like never before. When I was your age, DMDs hadn’t been invented and people sometimes faced 20 years until diagnosis. I have to say, of all the websites, forums and articles, this site has become quite a friend to me over the last month or two, if only that it reminds me daily that there are so many ‘me’s’ out there who really understand what I feel and think. There is of course no set proforma, or expected way for you to be or to follow. It’s about finding your own pathway and allowing yourself to be exactly what you need to in that moment. Focus on a real strength you have and grow it. Having MS doesn’t take away your uniqueness, in fact, if you focus on what your heart tells you, you will find that you have have reserves you didn’t even know were there.

I’ll send you a friend request, do tuck it away and use if you ever need to rant. Stay strong, there’s so much sentiment and spirit in your writing, even if it’s a bit deflated right now! X


sonia_tailor
9 months ago

@vixen
Thank you so much for replying, your kind words have really touched me and it’s brought tears to my eyes! It’s so so nice to hear from someone. It is true about the research, i’m on techfidera at the moment and it’s been treating me well. I’ve recently started using this site, and will definitely be keeping an eye on it so that I reminded that I’m not alone and that there are lovely people out there like yourself who can give support, thank you again, and for the add 🙂


stumbler
9 months ago

Hi @sonia_tailor and welcome.

The emotions you’re feeling are understandable and will resonate with a lot of members here.

You should never have been given the diagnosis in the way that you did. It’s at this time that you need support, to allow you to re-adjust your perspective to accommodate the MS.

Yes, MS can make you lonely. But, that’s only as lonely as we allow it to make us. We are not alone. If you were to stand at you front door and shout, “I have MS! Anybody else?”, there’d be people”creeping out of the woodwork.”!

Check out the “Manchester MSers” Group, which already has 25 members. You’ll find it here, https://shift.ms/groups/

And, yes, there are people in the world that are worse off than us. But, there are also a lot of people without a care in the world. So, why us?

As @vixen mentions, it’s not a bad time to get MS, if ever there was a good time! Medical science is pushing ahead in leaps and bounds. Hopefully, MS will just be a minor irritation to you.


munchies
9 months ago

Hi,

I felt like I was diagnosed and then left to my own devices but I was pleased when an MS nurse I hadn’t seen before told me about this website. I then got to know a couple of people through this website after a lady near me messaged me.

I now know quite a few people due to having contact with my local branch which was started by a conversation after my hubby put money in a street collection they were doing. Do you not have a local branch you can access? The MS Society have a ‘Near me’ tab on their website.

It can be hard to stay positive but you will find that you are tougher than you realise. If you do feel low though make sure you do talk about it to someone or vent it on here.

Take care
Kath.xx


sonia_tailor
9 months ago

Hi @stumbler thank you for replying, most of the times I’m quite positive; I think because it’s been quite a while without knowing anyone else plus having symptoms at the moment already, all the negative feelings have just come out. I will check out the groups and hopefully there will be a meetup sometime that I can attend! Thank you 🙂


sonia_tailor
9 months ago

@munchies
Hi Kath, it’s good your MS nurse told you about this site! I just happened to stumble across it when searching about MS! I’ve been thinking about going to a MS society branch near my uni, but I kind of got put off the idea from my parents who said it might make me feel worse if I see people who are at a later stage than I am. Which in fairness, I am a sensitive soul, and my parents are just looking out for me, but I equally want to meet people with MS too. I know that just because someone is at a later stage doesn’t mean they are unhappy ;they just do things in a different way or prepare for situations more carefully.

Thank you Kath 🙂


nicecupoftea
9 months ago

Hi @sonia_tailor I am sure there will be people in Manchester too but I live in Liverpool so not too far away! I’m 29 and just getting to grips with my diagnosis. I did my first degree in Manchester and still have friends there so will be over in Manchester at times. Maybe we should arrange for a Manchester group meet up!

Have you spoken to the student support people about your diagnosis? They should help to make any adjustments you might need, and you should be able to speak to someone through them of you wanted to.


munchies
9 months ago

Hello @sonia_tailor

Are you at Uni at home? If you put Manchester in to the ‘Near me’ section of the MS Society it brings up these branches nearby:

Salford and District Group
Contact: 0800 028 9830
[email protected]

Trafford and South West Manchester Group
Contact: 0161 973 1947
[email protected]

Oldham and District Group
Contact: 0161 626 6455

I can understand your parents worry but only you can decide whether you want to go. Could it be your parents are more worried about what they may see? As a parent you don’t want your child to suffer and it may be that they don’t want to see what MAY happen to you in the future (I say ‘may’ as everyone is different and what may happen to one person may not happen to you!) or to see you hurt, shocked, scared etc. Even if you didn’t want to go to the socials straight away you could call the group number and ask some questions as to what they do etc. Generally the branches will also have a Facebook page too.

Have you signed up for the £5 yearly fee for the MS Society? If you sign up to that you do receive publication from the MS Society itself but they also send your address details to your nearest branch who send out details about the local branch too.

To be honest our branch is quite small (so not always the most exciting) as the number of people who attend the monthly socials is generally between 10 – 20 people but other events such as a yearly BBQ or the River Tyne cruise every second year there are people who go to them that never go to the socials. It gives you the chance to chatter (and not always just about MS!) and you realise that you’re not on your own. Sometimes it helps to discuss your symptoms or if others are talking about theirs you realise that you’re not the only one who feels tired, low, lonely etc but you can also take positive info from others. Quite often you will hear ” I still do walking/running/studying/art/shopping/partying or anything else but I just do it a DIFFERENT way”

Can I just say I have met some lovely people because of having MS and I have taken quite a few positives from it. After diagnosis I thought sod it and went on my first ever holiday abroad and I sometimes think I am luckier than others as I don’t take everything for granted as much as some people do and I enjoy things more.

You’re probably asleep after this long post. Ha ha. Take care.xxx


munchies
9 months ago

Sorry I meant to say why don’t you click above on the ‘Meet other MSers’ , ‘Meet Ups’ and ‘Create a Meet Up’ and see who would be interested in a meet up and then at least you can start a conversation with people before you actually go for a cuppa or a bite to eat. I have arranged a Newcastle meet up a few times this way.xx


sonia_tailor
9 months ago

Hi @nicecupoftea (Nice username!)
A group meet up would be great! I’m mostly in Preston for uni but as soon as my exam is over I would be back in Manc again – although summer might not be a great time especially for MSers as I know a lot of MSers get flare ups of symptoms in the summer! My uni is pretty good, they’ve allowed me to have extra time in exams, and even have a separate room with a fan in for summer exams! Couldn’t ask for more from the uni 🙂


sonia_tailor
9 months ago

@munchies
Thank you so much for that informative reply! I will definitely check out the groups, although because I’m based in Preston more for uni I would end up going to their branch! And I agree with what you’re saying, my parents have always been quite protective, more so now that I have MS. But meeting new people sounds really great, it would be so good to meet like minded people! I’ll sign up to the MS society for sure! It’s great that you went abroad! It’s not as scary as it seems to be honest, I’ve been to a couple holidays since being diagnosed but as long as I took things slow and tried not to get over tired/over heated everything was all good! 🙂 I actually had to use a wheelchair a few times – it was very helpful, but I noticed I got a lot of stares, and some people were quite rude to me when I stood up and walked around for a bit. But I suppose judgement like that comes with an invisible illness!


nicecupoftea
9 months ago

Hi @sonia_tailor I’m sure we could arrange a good time for a few people, and there will be ways around getting too warm too! So glad to hear you’re getting support from university!


tracyd
9 months ago

@sonia_tailor
Oh sweetie what a crappy way to have an MS diagnosis thrown into your life.
You have a friend request, drop me a PM, I’m happy to share contact details of you need to talk / put the world right / vent your spleen on someone who has also won tickets for a cruise on the HMS MS xxx


munchies
9 months ago

@sonia_tailor

Sorry I tried to reply last night but the system was playing up (Still won’t let me click on the notification to here either).

There is a Preston group too and even if you do have groups nearer to you at Manchester I know you can ask to receive information from a different local branch instead.

Preston Group
Contact: 0300 323 9979
[email protected]

I wasn’t frightened of going on holiday it was more the fact of keep putting things off as there was always something else that seemed more important!! When I did go on holiday though I had asked about heat and MS but the Consultant said it’s more the dehydration from heat that causes problems so to drink plenty of fluids. I think she meant water but I did have some cider too. Ha ha.

Take care and I hope you feel a little less alone.xx


sonia_tailor
9 months ago

@tracyd thank you for the add! And for your sweet message, i’m feeling a lot better and more like my usual self! I think the MS had just heightened my emotions and I was going through a bit of a depressive episode for a few days- of course a symptom which you might be familiar with yourself 🙂


sonia_tailor
9 months ago

@munchies
Weird I’ve been having problems on clicking some of my notifications too! It comes up with error 404 for some reason? Thank you for Preston’s contact information! I’ll be ringing them soon! Ahh haha that makes sense! I should be drinking more water as well as keeping cool, also might have the one off cider like yourself too ;p
Thank you again for all your help and support, i’m feeling so much better! Take care too xxxx


stumbler
9 months ago

@sonia_tailor , the 404 error on the notification links has been a bit of a bugbear. There is a solution, we just haven’t found it yet!

We continue to look…………….


lavosa
9 months ago

Hey @sonia_tailor,

welcome to this site! I got a lot of support here right after my diagnosis – I hope we/ I can give you that feeling as well. The feeling of loneliness, especially in the context of university is something I experienced, too. I’m a 23-year-old student from Germany and at the moment going through another relapse with cognitive symptoms and fatigue. And I think most of us who experience cognitive symptoms or fatigue know the difficulties of explaining these symptoms to others – unfortunately, it IS hard to imagine the symptoms you are going through if people haven’t experienced them themselves 🙁 But nevertheless, keep on telling them about how you feel (if you want to talk about it, NOT because you feel you have to talk about it). People, especially friends or family, telling to go on and the reminding of others who might have it worse, always hurts. I hate to feel judged by people who cannot imagine at all how it feels like. But, for me, I feel better when I try to change perspectives – they WANT to help me, some of them even try to understand me. They just can’t. But mostly, they want the best and don’t think of the consequences of their easily-said sentences trying to cheer you up.
This site is a good way to connect to other MSers, especially if there aren’t any others in your own circle of acquaintances. To me, it has helped a lot to talk to others with chronic illness – most of them are going through similar experiences. Perhaps you’ve got friends or fellow students with other chronic issues? We’ve took it that far that we’ve established a new group at uni and work actively on facilitating studies for people with disabilities or other handicaps. They make me feel a little bit less lonely 😉

All the best for you,

LaVosa


sonia_tailor
9 months ago

Thank you @lavosa ! Sorry it took me a while to reply, I was having trouble logging in for a while 0.o
I do have a friend with Crohn’s disease so it was nice speaking to her and she understood about invisible illnesses!
Take care and thank you for your comment ^.^
Sonia

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