Hello
my name is jo, new to this… feeling a little upside down with first big relapse… thought I’d try this out as no idea what to do with myself
Hi Jo,
I am new to this too. Last week I had my first one too - 5000 miles from home in a hotel. It is very hard to be strong no matter when or where it happens and as I sat on the bathroom floor I felt like a little kid. After i slid to a phone and asked for help - 2 handymen lifted me up - I realised that was probably the hardest part. Asking.
So far in my first month I have found that one of my friends’ wives has MS - she is so quick with advice - that asking to board the plane to come home as one of the pre-boarding group because I was walking really badly that day was oddly liberating and that this is an exclusive club I didn’t ask to join.
It feels like we can make things work and that there are lots of people around us who we can help while we are strong as well as who are just so willing to help us if we aren’t.
I spoke to my HR person directly after I sent the notification to the DVLA - neither one of which I looked forward to. The HR director has made it clear that anything the company can do will be done and that I don’t have to worry, while my neurologist has already given the DVLA his opinion that as I didn’t have any problem driving my manual car to any of our meetings and have recently done an IAM course I ought to be fine for a while yet! My travel insurance for the year cost and extra £10 to include MS too - so no problems about a holiday and my car insurers didn’t care as long my neurologist is happy…
Keep asking questions, don’t believe Doctor Google’s unattributed “experts”, find out just how many of your friends have experience of MS and don’t be surprised that all of them want to help. That’s the embarrassing bit - they really do want to help us and it can be overwhelming when you think you haven’t needed it before.
2 Likes
Hi Jo,
Feeling upside down is not unreasonable. Good comment above. Something I bang on about (ad nausem) is try to build a support network of friends / family & medical professionals so that you can get the best help as and when needed.
This site is also a good source of info / experience and knowledgable empathy.
Good luck
Mick
Hello Jo, Welcome to the Forum, you’ll find it an invaluable source of advice, empathy and friendship. In my opinion the combined knowledge and experience of it’s contributors is worth far more than any neurologist. It’s open 24 hours a day and you don’t even have to make an appointment. Best wishes, Anthony
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Hello Jo (and JD)
Welcome to the Forum. We would all prefer that we didn’t qualify to join, but now you’re here, make the most of the community. JD is quite right, Dr Google would be struck off were s/he a real doctor. Believe your medical professionals. If you want to know something, look on this site (use the tab ‘About MS’) and/or the MS Trust.
Otherwise, try asking us on here. Again, don’t just trust everything we say, remember that mostly we are not medically qualified, what we tell you is often an opinion, not necessarily 100% reliable. But we will do our best to help out if we can.
Just remember MS is a total git. We are all affected differently. You can’t rely on MS following any rules, it does what it wants, when it wants.
If you’ve been diagnosed with relapsing remitting MS, you should take a disease modifying drug (DMD) if you aren’t already. Otherwise, keep as fit as you possibly can, in particular, try to look after your core strength. And keep as well as you can, eat well, but don’t be a martyr to dietary rules.
Sue
hello jo
welcome to our merry (on gin mostly) band of misfits.
and hello JD.
following on from what you said about accepting help - if you think back to when someone you know was diagnosed with a nasty, you really wanted to help.
accept all help that is offered when it is needed.
sue is brilliant with advice and facts.
our very own agony aunt!
Awwww Carole, you sweetie xx
you are a sweetie too sue dahling!