Ok, I am really new to this. I have been dx with MS, only a few days ago but although it’s a shock and frightening I have found that I am constantly reassuring friends and family that I’m ok and not to worry. But I worry. I’m not ok. Anyone else feel responsible for the emotional support of others???
Hi and welcome,
Sorry to hear of your recent diagnosis, it is a lot to get your head around. I know how you feel about supporting other people through your diagnosis.
I think a lot of us feel guilty for upsetting the people closest to us, which is completly irrational as it’s not like we asked to have MS!
I think the desire to protect people says a lot about your character
Have you been referred to a nurse? If so it could be beneficial to ask them, or your gp, to see a counsellor. Having a chance to express your fears to somebody you don’t feel you have to protect might be some help you?
In the meantime there are plenty of people on this forum who will be able to relate to what your feeling and are here for you when you need a chat or a vent.
Hi I’m awaiting official DX but been told almost defiantly ms I know what you mean , sometimes I just bury my concerns and pains as I feel I’m boring my wife , and before this we and my 2 daughters had a great life . I have been off work for nearly 4 months and again feel guilty about this , I don’t want my family effected by this disease . So I come on here and the people are great and understand you, so I’m just giving it time and slowly trying to get used to it. Take care Gray
Hi Asherel Yes I feel like this too. I don’t like the fuss and attention - it makes me feel like a little girl and I need to feel in control. Problem is then when I do feel I need to talk about it I can’t as I’ve alienated everyone. So I come on here! Don’t have an answer for you but here to talk if you want/need to x
It is a bit of a mixed blessing, other people’s concerns. On the one hand it is tiring, as you say: on the other it can provide, in an odd way, some light relief from one’s own worries - worries that can be a bit onerous when a person is newly dx! I think your post will ring a bell for very many of us. I bet there are few on here with an MS dx who have not had a, ‘Hang on, who exactly has been dx with this chronic progressive neurological condition?’ moments. Try to be patient with your loved ones. It is tough stuff for everyone, and uncharted emotional territory too. With luck, when things settle down a little, they will deal with their own feelings better and remember that you are the one in the hot seat. In the meantime, try not to get embroiled in their troubles; you have plenty on your own plate. Alison
Hello again and a HUGE than you to all of the lovely supportive comments thatIi received on my first (but probably not last) post on the site. Sorry its been a while, technology is fantastic… but only when it works! Interent is now restored after alot of gnashing of teeth and the occasional swear word!! oh, and help from the “Geek Squad”.
Since I last posted I have found that I am in the long process of learning when I am doing too much. I still is a shock that the simple act of hanging out the washing, putting the hoover round, washing up then a bit of a tidy up can then lead to absolute crushing deep to the bones fatigue! These were jobs I used to do before going to work for 8 hours!! The comment given by Sunflower77 of being treated like a little girl strikes a chord. In the desire to help me, my lovely family are now stopping me from doing anything to help around the house. I love them for caring, but it does make me feel the child of the family, rather than my daughter!
Oh and Gray, yes, you too strike a chord. We also had a lovely life before all this. The occasional trip on the Megabus to London for 11 hours, then back (I live in Wales) was a fab, cheap and fun day out for me and my daughter. I tried to go in the Summer with tickets I had booked months before I was taken ill. I am not sure when I can do that again, I had crutches and used the underground but the hundreds of steps to climb, the fast escalators and the hustle and bustle of those around me, the long day and the walking wiped me out for 3 days. It hurts, not just physically. I too don’t want to bore my husband with this. I am 38 years old and I really don’t feel it anymore!!
Many thanks again xxx Asherel
Hi I have recently lost my vision in one eye for 8 days, been to emergency eye doctor who has looked and said my optic nerve is inflammed. He said I need to see neurologist as this is the first symptom of MS I have chronic pain in the eye. Appointment for hospital is not until August I am now worried as in March I had numb feet for 4 weeks blood test came back that my folate levels were low so could of caused numbness. What do other people think about this???
Hi Anon. I reckon you will get a more dedicated response from people if you start your very own thread on the particular issues you are having. If I understand your post correctly, you are seeing a neurologist in August? I expect it feels like a lifetime away but it will come. He or she will then evaluate you, listen to your symptoms, do some physical tests on reflexes and strength/tone, all that kind of stuff and decide from there whether there is cause for concern or not. Keep a note of your symptoms, timings etc to take to hospital with you and try not to worry too much. Eye problems can present work MS, they also present with other stuff. Best of luck.
i live with my husband of 38 years and two grown up sons.
they were great and just said that we’d get through it together.
however my sister lives 3 houses away.
she would be in floods of tears every time she saw me.
i ended up saying “stop treating me like a dead woman walking”
hubby thought i was being harsh but she is a real drama queen.
it’s hard because we don’t want pity or sympathy, just empathy!
i have learned that some people don’t understand what empathy is although i get it from strangers!
what i wanted to say, before i went all around the houses, is know what it is you want from others in your life.
then if they don’t respond that way, just come out and tell them.
it is hard for those close to us.
both my sons have medical conditions and if i could have it for them, i would like a shot!
i found it helpful to make it clear that when i needed a peaceful minute/hour, that’s exactly what i mean.
it has only been a few days so please be gentle with yourself.
you will get through this.
you are stronger than you think.
sending love and healing thoughts
Can I call you Ash ?
catwoman and susesue (both spelt wrong) are reliable for their great advice.
i am a year on from you. For me it’s no easier, but family and friends have ‘got over it’. My worst was my 93 year old gran crying. She now believes it’s no drama !
i do not have the answer re ‘trying to ensure loved ones are OK’ and getting the support you need.
For me, this forum is keeping me going until I find a way to get what I need from those I am close to.
P.s. I so so relate to being exhausted by ‘Normal stuff’. Just makes you want to scream / cry
big big hugs
i was diagnosed in January 2018 and I’ve only just got to the point where I want someone to reassure me instead of me reassuring them! It’s a built-in instinct to protect other people but sometimes you have to be honest and brave and voice your thoughts and feelings. Maybe start with someone you’re close to. For me, it’s my mum. Or if you’d prefer, get a counsellor or your MS nurse or even on here. There are plenty of ways to speak out and be heard.
It’s normal to worry. Will I deteriorate? Will I be in pain forever? But with the right support and research you’ll feel in more control and dare I say better in no time.
Some people just don’t realise when they’re not being helpful. Asking so many questions like “are you going to be okay in the end?” Or “what does this mean for your future?” You just need that one person to say “it’ll be okay” and Asherel, it’ll be okay.