I think that on Saturday night a new episode has started and not really disappeared and I can quite honestly say that it’s the most vulnerable I’ve ever felt. I’d been at a gig with my sister and my friend, felt fine throught it and was having a great time. It wasn’t until I had to walk to the car afterwards when the problem started and I hadn’t touched a drop of alcohol. On the way back to the car I suddenly started to walk in less of a straight line than usual and because I was trying to fix it my back became bent at a 45 degree angle and I couldn’t stand up straight. When my sister was trying to support my my left leg which is the weak one turned inwards and waves of pins and needles started to go up and down it. Becoming almost immobile so quickly is upsetting and scary and I started to cry but to make matters worse there were crowds of people walking behind me who began to snigger and talk about me as though I was an emotional drunk wreck who didn’t know her limits. Since then I’ve felt weak, exhausted, even slower at walking and like I could cry at the drop of a hat. I’m unsure if this is because of how upset I felt with people laughing and I’ve lost my mojo, if it’s a new episode starting or just that these things will happen now and again and I just need to suck it up. I’m so sorry I’ve written a thesis like post but just needed to share! Claire xxx
Claire, I wanted to respond not because I know the answer but just to say I hope you are ok. I am at the tail end of my first proper episode so don’t know what I would do if I thought another one was starting. To have an episode as you describe in such a public place leaves you feeling very vulnerable and angry and I expect that the feelings from this with run with you for a time. Have you told the GP? I want to say that this episode should not stop you from going out and enjoying yourself again, despite the thought that it could happen again. Your the daddy not MS. Yvette x
Hey Yvette! Thanks so much. Isn’t it horrible? I was shocked at how quickly that started at the weekend and without even feeling that something was perhaps about to start. Unpredictable and unfair. I’m going to speak to my GP about it on Monday and have an appoinment with a new neurologist on the 21st so I can describe it to her too. I went into work yesterday even though I could have seen it far enough but P2 certainly made me smile and take my mind off it. I really hope you’re starting to keep well again after your recent episode and are starting to get back to doing the things you love! xx
Usually when I have a new “episode” It seems to happen quite quickly although usually I’ve woken up with new symptoms. I find if i get really hot or if I get really tired it exasperates the symptoms I have. The hot summer this year has been a killer for me, the light headedness and fatigue and vertigo were really bad. But my neuro thinks I’ve had 3 separate “episodes” in 7 months, I dont feel I recovered from the first and it’s only 1.
When I first had my first “episode” I was trying to walk my 3 boys to school I think my youngest was about 5 at the time. This old lady walked up to me and said
“you should be ashamed of yourself being drunk with small children at this time in the morning”
I was so shocked I never even replyed, so I can understand why you felt so embarressed, they’re not to know whats happening and coming from a venue like that it’s kinda what you expect to see, although distressing for you. Dont let it get to you, I find the mobility aids hard to take, but other than that, I dont care what a bunch of people I dont know and will never see again think. I doubt they’d be able to describe anymore than what happened, about you they certainly wont remember your face the same as you dont remember there’s just there expressions. The only peoples opinions that matter are your own, be strong, and enjoy your life you only get 1.
Goodness Jo you must have been livid! People really have to wind their necks in sometimes I completely understand what you mean about extremes of temperature although I’m the opposite and it’s the cold weather that affects me adversely, Three episodes in the space of seven months is absolutely hellish too! I hope your neuro has been able to give you something that might help to control it some more and it works! You’re spot on about letting other people’s reactions to what they see go over your head! Wiill need to try and develop skin like hide lol. Claire xx
I got a card from here that states I’ve got MS and that I need help. When I’ve been given abuse for stumbling/looking drunk, I’ve pulled it out to show them, smiled and walked off.
MrsChicca that’s a good idea! Saves you having to start doing a laborious explanation. xx