I’ve spoken with a few people recently who have asked, ‘are you really so chilled about MS now?’
‘What’s happened to all the dark posts you used to write? And if you’re on something, can I have a bit?’
Hmm. Tricky. I sometimes feel that if I let the dark stuff back in, I will never leave the house. In a lot of ways my life is more fulfilling now than before. I’m far stronger (in mind, not body), I’m doing something I love with my Masters course and I am probably a kinder, more tolerant person.
However, there is definitely something in what they say. I admit, I still wake up in the wee small hours, gripped by a terrifying fear of the future. Every time I trip or stumble over my words, I am reminded that my life now will always be defined by these details. Heck, I even have plastic wineglasses.
I’ve had an angsty time at Uni, punctuated with inelegant falls and a very real dread at failing. My brain just doesn’t work the way it used to. Searching for the right word is charming in a French-language film, where the beautiful young woman pauses between cigarette puffs, but utterly soul-destroying when I struggle to find the word ‘paragraph’ at a tutorial at the age of 41 with wrinkles and an undying love of bacon butties.
So, yes, MS is still crap, in all it’s devious glory. It invades every area of my life. Currently, it’s shoving me around. Next week, perhaps the nerve pain will crank up, who knows? This afternoon I was supposed to finish my essay (deadline 5pm Wednesday). Instead, I fell asleep, in the middle of watching a very interesting discussion about which colours to wear this Winter.
My newest medical annoyance is trigger finger. Funnily enough, I noticed it in the wee small hours as I was lying in my bed pretending to be asleep in case the cat bounced on my face, yelling for an early breakfast. I flexed my hands and two fingers stayed the same, crooked and weird. I did the same thing and they stayed the same. Strange, and a little bit worrying.
So of course, I got up and googled MS and trigger finger after feeding the cat. There may be a link between the two. Or there may not be.
MS is crap and it always will be. The only thing that will change is my attitude towards it. And, the upside is, when I woke The Teenager and showed him my dodgy trigger fingers, he was actually rather impressed in a ‘ewwwwww’ kind of way. It doesn’t take much.
Crap indeed. But it stays crap whether you are in a good frame of mind or are vaguely suicidal. So best to stay as positive as possible. Besides, people will like you more if you are in a good mood.
Very, very true. I’m actually in a really good place right now and sometimes have to push away the negative thoughts. The MS will always be there, so it really is up to me to accept that and create a happier life.
x
Definitely agree, I’d say I’m at a similar place right now, where Im not happy about having MS, or the pain I have, but it was time to start living my life and doing the things I want in spite of all of that! Doesn’t mean it isnt crap, like you said, but staying negative about it isn’t helping anyone 🙂
Exactly! If MS teaches us anything, it’s that life is very short. Sure, I’ve been through some horrendous times and still have dark days, but on the whole I am trying to see the positives in life more than I ever did before. I hope!
x
Great read again, these dark places and days are crap, BUT we just go forward and think, MS you are not going to stop my life, (I hope) , I just walk around IT lol xx
Thank you! And you’re right although I stumble around it, lol.
x
I’ve been in a really dark place, & let’s say that it led to life support for 3 days. MS has taken so much out of me. My family has not been supportive. The only one that has been by my side has been my husband. Only my husband was there at the hospital & the PT Hospital-Center. Now, I am in a different place. Still struggle, I am not very good with what I can control, but I am better & simply cut people out. I have MS, MS doesn’t have me…
I’m so, so sorry to hear that, how awful for both of you. MS is cruel beyond belief sometimes.
It’s often better to cut people out your life, I’ve found. We simply don’t have the energy to be someone we no longer are and some people just can’t handle our illness. I know this all too well from personal experience 🙁
Are you on Twitter? It’s been so supportive for me, especially as I’m the only adult here at home and would never burden my son. If I’m having a terrible day I know that just one tweet will bring a fantastic sense of community and support. It took me through some truly awful times.
I’m always around…
x