Hi
i first posted a few days ago. I have symptoms down one side which started in Jan and are getting worse. I have a brain mri on s few days and emg testing in early June.
I have just had a major cry, after again getting trapped in my bra. As stupid as that sounds. My left hand is utterly useless. I realise I may not have ms. I may have something else. I may have nothing. Just random never to be explained symptoms. I am a mental mess. This is dominating my every hour. I’m so impatient with my little boy and I hate myself for it. I don’t know how I can handle much more and if I am indeed ill it’s only going to get worse. And what if it isn’t ms. What if it’s worse. I know emg tests for motor neuron disease and my consultant deemed it appropriate to order those tests
I don’t know what in looking for by posting really. Just to get it out I suppose. I never saw being disabled in my future. No one does I imagine. How does one get their head around it? I’m a depressive as it is. There is already enough of a struggle in everyday life.
More practically, I try to exercise my hand. But it’s mentally exhausting. Stupidly hard work. Is there any point doing it? The aches and stiffness I’m getting in my back and neck from I assume compensation issues are getting worse. I literally feel like I’m aging daily. If this is ms and I’m mid attack if I was on any medication would it be helping?
hi tilly mint
i know what a simple thing like putting a bra on or taking it off can do to your self esteem when suddenly you can’t do it.
even 8 years after diagnosis i still have to put mine one by fastening it at the front and dragging it round.
you can get front fastening ones which would be easier - duh why didnt i buy one?
anything you can do to retain strength in your muscles is worthwhile but careful not to overdo it.
you are having a rotten time of it.
take a long look at your life and what is important.
i’d imagine that your little boy is top of the list.
as for your depression, are you taking anything for it?
speak to your gp about it. if you are already taking an anti depressant it may need tweaking.
try mindfulness meditation - it really isnt difficult.
just 10 minutes can work wonders in calming you down and helping you think clearly.
perhaps your gp could refer you to a course.
take time out for yourself - arrange to meet a friend for coffee.
don’t shut yourself off, you are still you.
honey i wish i could be there to hold your hand.
carole x
Hi Tilly Mint
Just wanted to send you a virtual hug and to say you are not alone.
Carole has given you some brilliant advice and, from my own experience, you need to try to focus on anything but what is essentially the ‘elephant in the room’. I’ve just spent 15-20 minutes sitting outside in my garden, listening to the birds and watching the clouds move. OK, it doesn’t take away from how I am feeling but does enable you to relax a little and calm those anxieties.
Take good care of yourself
Jane x
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Thanks both.
I was in a bad place last night.
I’m not on any meds at the mo. Became very disillusioned last year with pill pushing psychotherapists. I am flying solo but getting some therapy. I have done CBT courses and mindfulness earlier this year. I felt v positive about the mindfulness but my symptoms have become too dominant. It’s hard to do it. I either can’t focus or fall asleep. I am so very very tired. The limbo stress is like a daily marathon.
ive never been able to do a bra up behind me. Always been round the waist. It’s the pushing the clasp together to release the hook. Can’t do it as finger and thumb cannot hold anything. It’s truly pitiful. And. I can’t squeeze my spots!
Psychiatrists not psychotherapists
never mind about getting the word wrong, i hadn’t noticed.
don’t be too harsh on yourself.
you are not well and if standards slip, so what!
you should never squeeze spots, it leads to scarring.
listen me, going on like aunt lizzie!
i’m going to stop writing now as i’m feeling quite bonkers.
hug your little boy, cuddles are great for both of you.
also if you inhale above his head (they smell gorgeous) it’s inhaling the elixir of youth!
carole x
ps. sorry if I’m rambling, I am cock-eyed from needing to sleep but too sore to get any rest tonight. I just wanted to add that the limbo stress you mentioned is soooooo hard. People who haven’t experienced it, or don’t know anyone who has experienced it, will often not realise just how long it can go on and many people have a very black and white view of what MS is like and how it is diagnosed. I think some people imagine there would be a few tests that the doctors would do and then you would have a definitive answer - do you have MS or do you not have MS? Well of course, some people will get a definitive diagnosis relatively quickly, but I’ve been in limbo myself for the best part of a decade. I’ve been told I have probably got ppms, because there is nothing else that would explain the symptoms or the lesions which showed up in multiple MRIs (first diagnosed as Transverse Myelitis) then there were more of them, so it changed to ppms, but even then my neurologist will still only say “probably”…
People don’t know what to make of that. They sometimes say “well that’s good news that it’s not definite, isn’t it?” And I want to say noooooooooooooooooooooooo!!! Of course I don’t want to have MS, but nor do I want to have these symptoms without any explanation for what causes them, without any treatment options and without even a definitive name that I could use to help people understand what’s going on for me.
The limbo thing is really, really stressful and you are doing an amazing job just keeping on going through it all. I really am sorry if I’ve talked a lot about myself in my replies to you - its partly just I’m having a rough night, but also because I really relate to some of the feelings you were describing and I hope it will be of some help for you to know there’s lots of us who can understand and empathise.
Here’s hoping tomorrow is a better day! (if I could just sleep before my alarm goes off and the day starts in earnest!)
Thank you very much space monkey. Your words are very helpful. The stuff about needing to be the roof while needing one yourself resonates. And about the armour. I handle stuff alone best as I need too. I tend to push people away when I’m struggling. (Can’t help me so go away) But I could do with my dad’s big arms around me right now. Though he is no longer around.
I hope you have had some rest.
I have a brain mri later today. Who know what that will or will not reveal.
Good luck for today TillyMint
Jane x
Space Monkey
You write so eloquently and I am sure your words will resonate for so many people, especially those of us living in limbo land and who have caring responsibilities too.
Take care
Jane x
Sometimes life just is all too much and there isn’t any way of coping well with that - you aren’t ‘failing’ - that’s just the way it is! Sometimes just plodding on despite everything, breathing in and out, is as close as a person can get to coping well. Hang on in there - those big questions might be impossible to answer, but they will not always dominate your life the way they are doing now - honestly, they won’t.
Finding ways of expressing distress and all those strong emotions in a ‘safe’ way can really help, I find. Letting it out on here is a good start. There’s someone on here who recommends yelling full-power into a cushion - that’s worth a try! You will have your own ways of letting off steam. Concentrating on finding and using lightning rods to discharge your difficult emotions sounds like a priority for you - clearly your fears of being short of patience with your child are adding to your distress.
Good luck.
Alison
Good luck with today Tilly Mint. (BTW I love your user name. Tilly Mint was one of my late father’s nicknames for me so it always makes me smile.)
Same here. My dad was from Knotty Ash. Ken Dodd country 
I was born and raised in Liverpool and my dad was a proud Scouser too. I actually auditioned to be a diddy man in Ken Dodd’s panto one year when I was little but that’s another story …
I notice that you are living in SW London. What hospital are you currently attending? I was originally diagnosed at St Georges in Tooting but my original neuro was at the Mayday in Croydon. (I have since moved to Cardiff)
Yep st George’s.
How funny. About the diddymen
when I lost my dad it turned out the funeral director we chose had been a diddyman for years. She was perfect.
Small things (and people)
Will send you a message in a bit. I am currently at the hospital in Cardiff awaiting my 6 monthly appointment with the neuro.
Hope it went well. Though I don’t know what is involved. Lack of progression I assume.
TM. x
Me too!! I was born in the Knotty Ash area and my mum and dad used to call me Tilly Mint. Happy days 