The last time I reached out (blogged out?), I was weeks away from becoming a dad (well, a father for the second time....my wife gave birth to son number 2) and I wanted to share my stresses with becoming a father of two, alongside my fear of my MS worsening. Well, I am pleased to say it is now a year on and I have a 1yr old and a soon to be 6 year old and its been going well...ish...so far.
I think the stress and concerns of my MS definitely set a high bar for me, so when it all started happening, it was not as bad as I thought. In all fairness, I have struck lucky with the kids we have as they are really good...so far. It is stressful and exhausting and the fatigue hits me harder nowadays, but a loving family makes it worth it.
So far I have been on Ocrevus and that seems to be doing its thing - by thing, I mean no new major MS newbies creeping up after the frequency was changed from every 9 months to every 6 months. I have been starting to hit some bigger dizzy spells recently, making it feel like I'm in some sort of horizontal washing machine when I lie down. God forbid needing a pee in the night, its like I'm walking through a fun house.
I do fall over from time to time, but only if I'm not concentrating. I tend to put all 'the spoons' into walking with the kids. It's only when I'm on my own, the guard goes down.
Dad tip: If you throw yourself around when playing with your kids, be prepared for crash landing when the ground comes at you!
My current job is not helping with the fatigue as the company has been absorbed into a larger machine and the workload seems to have doubled at the minute, hopefully it will be settled soon. I find myself drained of energy by lunchtime, which isn't great but I still push myself. I need to try and give myself some time to rest, but I'm my own worst enemy. I think the more I start to become fatigued, the more I push myself as I find myself being stubborn and going to war with my body/mind - "I'll show you who's tired - me!" I can only assume I'm not on my own with this.
When the evenings hit, I'm mostly too exhausted to think. I am writing this in the evening, so excuse me if this doesn't make sense)
PIP is an absolute nightmare as well! I got shot down the first time because I said I cook, and I will drive an automatic (I don't feel comfortable driving a manual anymore, due to left leg weakening). Apparently, you are not allowed to be honest about that, as they class that as being absolutely tip top. I didn't realise they are purely listening for anything to catch you out - "oh, did you say you can brush your teeth with your own hand!?"
What's even worse, the person I spoke with didn't even know what MS was. Ignore the fact I struggle to walk in a straight line, feel, dizzy suffer from crazy spasms/cramps, brain fog, fatigue... you know! We have all been there.
I rang back the second time and my wife (bless her) spoke on my behalf. I didn't want to bring her into this, because she had to play the ghost of what's yet to come and paint a bleak picture of my future, which is not good for her. Nope. I can still operate a pepper grinder.
I feel like I do quite well with general day to day stresses as I try not to let things get to me too much, even though this blog doesn't read like I'm keeping cool; the little stresses are pointless. I can roll with those, it's more the ridiculousness of life that sometimes gets to me.
Hobbies. We all need them, if you have got the energy in you. I recently started painting and - I don't like tooting my own horn (the MS wont allow it)- but I think I'm pretty good. Finding something for 20 minutes a day can do the world of good for you. Something that 100% of your attention can swim off too.
I have started being more comfortable using a walking stick in public more this year, as I feel its needed more every year. A part may finally accepting that I need to whip out the stick (oh, grow up!), and I'm at that age where I give less of a shit.
If you are in your 20s with MS and feel uncomfortable having a walking aid with you, then please don't. No one is looking at you, there's no need to feel embarrassed or uncomfortable about it. Own it, own who you are. It was tough for me in my 20s with MS, but as long as you have people that love you and you love yourself, then you will be fine. Reach out to people on places like this, Instagram MS communities, I have spoken with some great people and it's great having that weird thing in common.
You're all ace (if ace is still used?), big love MS folks!
I have had MS since 2012. Not spoken with fellow MSers before. Not by choice, just that I don't know anyone apart from the man who owns a sweetshop whose wife has MS, but that was more in between buying some Uncle Luke's. I like drawing, writing, film making, stuff of distractions.