Thought I would introduce myself (as pretentious as that sounds). Only discovered this site yesterday, spent quite a bit of time reading various threads. Was diagnosed in 2010, told my “new” (a tale of divorce) family and got a variety of responses (from apathy to sympathy). I get the impression from some, that I am a fraud and there is nothing wrong with me, as on my good periods I go to the gym, therefore I am not ill. This has discouraged me from sharing anything else, if someone asks how I am “I am good” has become an automated reply. Even though currently I cannot feel my right leg, lost vision in right eye, and awful nerve pain in my back…but “I am good”. Discovering this site was fortuitous as I was idly surfing, and avoiding MS related areas, as soon as I started reading the threads I no longer felt I was an island, that there are people who are going through the same, and worse than myself. This may sound obvious to some, but my reaction (and still is to some extent) to the diagnosis, was to withdraw, hence thinking I was an island. I am forty-something and cannot help but feel my life is done, where do I go from here? Support from a physical point of view has been great, but I was left to deal with accepting the condition mentally to myself (still am). I no longer even attend Church, faith has been stretched to the point it snapped. Never spoke to anyone about how I feel. I know that people do carry on, but currently I don’t feel I have the strength or motivation. I know I should speak to someone, even typing this has me teary eyed. I don’t really have family support to lean on, my Father raised me on his own since I was 6 and he passed away several years ago. My mother only come back on the scene a few years ago, and as much as she is my mother she does not feel it. Anyway I am rambling. If you read this, thank you.
i struggled to read ur post-my prob, not urs! but was determined to read it to the end. am glad u found here,often just letting it out/admitting to urself helps.i hope u find comfort knowing that ur words have been read and undertstood.
i take 15 mins at a time-def not worrying/fretting re tomorrow and i find this helps. u are fairly newly diagnosed-give it time-you WILL find ur way of coping which will be unique and right for you.
take care and welcome, ellie
Hi, welcome from me too.
We are a mixed bunch of folk here, some long termers as regards MS, with a huge variety of experiences to share.
I`ve been a member of the forum for a few years and find a lot of support and kindness here. I was mis-diagnoosed with PPMS for several years and it has now been discounted. My current diagnosis is;
spastic paraparesis/cause unknown.
Most of my symptoms are very MS like, so I`m told by folks here, that my story is of interest and sometimes helpful for newbies, so I lurk around most days!
There are lots of tales of new and even better friends and those that fall away. This also goes for family. Remember you can choose your friends.
I decided years ago to ditch those who had a negative attitude because I simply had enough to contend with. I would recommend if you do not have a close positve friend to ask your GP for a referal to the MS Outreach team and in particular a Councellor. If there is a MS Nurse or admin department they may be able to do it for you.
Life is short and there are a lot of positive and wonderful things/people out there but it does take some effort from you. Try looking at the positive things you have achieved, what you would like to achieve and work out from there. There must be some people at the gym who are friendly. I used to get annoyed when people asked me if I was having a good day or a bad day as if any day with MS is a good day - I have grown in my MS now - it did take me 3 years.
I would also look at the MS region to see what is going on and try to take part as this will give you more support from people who do understand.
I’m fairly new on here too and was diagnosed with rrms the same year as you. My ms was kept fairly secret for a good while as I wasn’t sure how to cope with telling people…especially at work. Now I’ve started to tell a few of them as I have had a few adjustments made at work and wanted my colleagues to know why. People have been very kind and understanding, without showing any pity, so I’m glad I came clean. Ignore the people who think there is nothing wrong with you just because they can’t see your pain and discomfort: they are ignorant and don’t deserve your time or effort. You’re young and have life ahead of you that you can and should be enjoying, life is not over because you have ms, it’s just a bit different.
Take Moira’s advice and get someone to talk to, it should start making you feel better.
Hopefully writing down your thoughts and having a good cry as in some way been cathartic for you.
You will find lots of lovely people on here ready to offer support and a listening ear.
I can’t really write much more tonight because I’m getting tired. Just want to say welcome.
Hi Dae Welcome to the forum. It sounds like you’re going through a tough time but I’m sure that this forum will be great in providing you with the mental support you need, and I’m glad you receive good physical support. Life has a funny way of chucking things at you, but there’s no reason to think your life is done - it’s just swerved around an unexpected corner, but the journey continues! Look forward to chatting with you Jane xx
Hi Dae Please feel free to ramble on whenever you like. We’ve all done it and it is just a great way of offloading. To say stuff you feel you cannot say to anyone else. It really is a tough blo…dy disease that no one will possibly understand if they haven’t got it themselves. How can you possibly be ill with MS you can still go to the gym. What ignorance of people. I have decided not to tell people as its none of their business. However I was going through an incredibly difficult time at work. The support I got from my church was amazing and really helped me through. Re reading your post - you need to get your head round that YOUR LIFE IS NOT OVER. You can still have a happy fulfilling life just a different one that you were expecting. I find I tend to appreciate the little things in life more. Be more grateful for what I do have. Be more proud of myself for my achievements however small. Ok stop it now Min you’ve said enough. Take good care of yourself Hugs Min xx
Welcome, my wife suffers with MS and although I don’t have it myself I have to deal with what comes with it,you’ll find a bunch of very helpful people both sufferers and carers,Harvey
Don 't be embarassed to introduce yourself - it helps us get to know people. Only thing is are you a man or a woman? Did I miss that bit?
Know how you feel the ‘you look so well’ means I’m hiding the stiffness in my legs, suffering the tingling running from my toes to my waist, managing to stand up without holding onto something, holding a glass with only one hand.
Ps I go to the gym on referral from the hospital every Tuesday all neurological problems - good exercise and a good chat too.
Do you have a MS nurse? If not ask your dr to refer to you one - they’re good to talk to and will help.I’m seeing mine this afternoon and only have a few points written down to ask about.
Keep positive and glad you found this site.
Jen x (there are two of us!!)
Hi Dae and welcome
I’m sorry that your family aren’t very supportive. I think sometimes it can be hard for people to understand how MS affects us unless they see us every day and for several hours a day. My colleagues are more understanding than some members of my family but that’s because they have seen me at my worst and they have seen how things can change from one hour to the next. I’m not trying to make excuses for your family but it is hard for people to understand what they cannot see and as we know with MS the hardest things for us to cope with are often invisible to others.
That’s why I like this forum so much. I can share things with others who really do understand what I’m talking about because they have experienced it. I’m not trying to explain a fuzzy, tingly feeling to someone who cannot have any understanding …
When I was diagnosed 4 years ago, I was in the middle of a nasty relapse that had left me barely able to walk and my hands were affected so it was hard to make a cup of tea or prepare a meal. I thought that was my life from then on. However, I am still working 30 hours pw (actually I ought to get back to work pretty soon - am on tea break now), still socialising, still take holidays etc. In short, life is still good, much better than I thought it would be. I went over 3 years without a relapse. I did have two this year but am recovering and still keeping busy. I’m learning to work around the MS and not give in to it completely. I rest when I need to and refuse to feel guilty about it. I’m still learning the hard way sometimes but I’m getting there.
You’re welcome to come and ramble, rant or moan any time you like on here, that’s what we’re here for. We also like to have a gossip, laugh etc sometimes too. We’re like a family and we try to be supportive of each other. Look forward to chatting with you again sometime.
My apologies utterly lost my train of thought with post. I am a forty something GUY (missed that part), and my dx is RRMS, though it feels more relapsing than remitting this past year. Thank you all, firstly, for taking the time to read, secondly, for your words of encouragement. I do have a MS Nurse, but only been seeing her once every 3-6 months, and now I am getting a new nurse. Not happy about it as I developed a relationship with her, now have to establish another. Not an easy thing for me to do, have been seeing a clinical psychologist as I developed Social anxiety after my dx, so I find interactions difficult at the moment. Takes a lot of effort to go to the gym in this regard, which is made worse by the fatigue at times, but I am keeping an eye out for other actvities in my area that I can dip my toe into. Here is another example of the feedback I get from family “You should take dance classes, t hey are very social” an utter disregard for the times they have seen me with a stick, and the times I am incapable of freestanding. I know I need to adjust my thinking, and to take life in small bites without worrying about 5,10, or 15 years ahead. Another salient fact I missed in my introduction ,my partner left shortly after my dx, she went online read about ms and figured she was not strong enough to deal with it. It must seem I am feeling sorry for myself, on the whole I don’t. But with each negative comment, it feels like another weight is placed upon my shoulders, and eventually it feels like an anchor on my back, which holds me in place until I can mentally shake free, or set sail again (to keep with the analogy and my earlier island metaphor). On the positive, I love to write, and I have had plenty of time to do so. Once again, thank you.
P.S. I hope this does not double post, had a slight issue (with my brain it seems!)