I’m not sure where to put this, but I need to get this off my chest.
I’ve officially been diagnosed with MS since 2016, and I swear to God, I think my emotions are running ten times slower than my body is. I was told that I’d go through a period of mourning or loss after I was diagnosed - well, two years after I was told what was wrong with my body, it seems that my brain now wants to start grieving for a life that I’ll never have.
I’m sick of having to sugarcoat everything in my life to make things more palatable for other people. I’m sick of dumbing down explanations of what MS is, of not going into too much detail when someone asks “but what could happen if you have another relapse?” in case that I upset their precious wee feelings, of feeling useless and an utter failure because I’ve got this…thing inside me that wants to play havoc with my life. Five years ago, I was starting to plan what I wanted to do as I got into my forties (no sob story here, but I had a pretty horrid childhood, my teenage years were the worst years of my life, I’ve blocked out my twenties and my thirties have been dominated by illness) - and then this thing hit me. And the most awful thing is that instead of feeling depressed about it, of feeling sad about it, of feeling lonely all the time and/or feeling cold to the world…I’m angry all of the time. I’m angry every time I have to explain what’s going on. I’m angry whenever I get asked one of the routine stupid questions (No, Janice, you can’t catch MS from drinking from my coffee cup, but I’m more than happy to slip some bromide into that honking brew you so jokingly call ‘tea’) I’m sick of being treated like a victim and yet I’m angry that I’m not getting more support from my family or my employers, that I get treated with kid gloves by my immediate family and that my extended family are either ignorant or just plain selfish to what’s going on with me.
I’m angry that I feel that I’ve had so much theoretically taken away from me and that I don’t have - I never have had - the resources to get those things back. I miss being able to go for walks for hours and hours and not feeling exhausted. I’m angry that my workmates either think that I’m making this all up or that I’m milking my situation for sympathy. I hate feeling that I’m trapped in my job because I’m not sure how a new employer would react to the MS. It makes me angry - angrier than anything else and because I’m so goddamned polite and so damned restrained with every idiot and moron in my life, I don’t know how to best express it. My MS had a snide little effect on my speech when I had my first major MS attack - it left me pretty incapable to speak for long periods of time, so asking me to vocalise these frustrations is so damned counterproductive and anger-inducing. I’m sick of having to plan my life around a bloody illness that may or may not have the cheek to manifest itself. I’m angry that I don’t know where to turn or who to ask for help or that I’m so angry and worried that no one will want to help me. Up until 2015-16, I’d started getting my life back on track and this - THIS - has punched me down into a hole that I’m worried that I’ll never escape.
Sorry for the rant, but, god damnit, I needed to get it out.
Haha I absolutely love your rant!!! You mention so many things that also drive me crazy it’s almost comforting to know I’m not going mad so thanks for sharing. If you need to be angry to get through then no one’s judging (I hope!). Keep going and let’s not be beaten!!!
I think anger is a perfectly rational reaction to MS. As someone on here said recently, MS is a thief. It’s stolen so much from me, and it’s a thief that comes back for more, even when I think it’s taken all I have, there’s still more.
And the fact that it took you some time to get to the f’ing angry stage is probably quite typical. When first diagnosed, you don’t know all the things you know now, how you’ll end up apologising for fatigue all the poxy time. How you stay silent, or sound like a moany cow for voicing your feelings. How you’ll sound like a whiner or as though your ‘using’ MS as an excuse for what you don’t want to do.
Feel absolutely free to rant on here. It’s partly what this forum is for. To express our feelings to others who know what it feels like.
And I agree with Mrs Happy, excellent rant. And with Dizzy, MS does indeed stink.
My anger hasn’t really subsided. I have learned to give it some space. Let the anger have a bit of ‘me time’, then stick it back in its box till the next time it’s needed. Today I just sent a ranty email to my mother, really complaining and whinging about all the bloody things MS has done to me this week. She won’t mind. I started out with ‘Dear Mum’, and ended with ‘lots of love’ (with some emojis of flowers). She won’t care about all the whining in between.
Reading this makes me feel like there’s someone out there who understands. You mention so many things that I feel and think. I’m only 20 but I already feel like my life has been taken away. I still haven’t had my ‘mourning period’ but I’m sure it’s not gonna be long. My teenage years up until now are the worst years of my life and with a diagnosis of MS, I was so relieved. Everything made sense. But then, like you mentioned, “what’s MS?” “What’s your worst case scenario?” So many questions you do not want but get daily. So yeah, I can totally empathise…even though we don’t want to feel like victims…but we are…it’s complicated
