Jenny Today I was the old me… and I loved it. I wasn’t doing anything exciting, but I was actually doing stuff. Stuff that made me feel useful and like I actually achieved something. My morning went like this:
Put a wash on
Have a shower
Take the kids to school
Went into town to pick up some prescriptions and to buy my son some school shorts (big, fat fail with that one!)
Met my husband for a coffee
Got home, hoovered stairs and landing, swept the floor, dusted the living room
Had a cup of tea with my Mum, who came round to help me with my garden
Hung out the washing in the sunshine
Made some energy balls for the kids to have for an after school snack
And all this by 12pm! Of course, by the afternoon I was ready to go for a lie down but, by the time I did, I felt like I had really earned it. So, how did I manage to have the energy for all of these tasks, when normally the shower itself would have done me in for a good hour after? I’m not 100% sure, but I wonder whether some steroids that I am taking for my Multiple Sclerosis may be giving me some energy; certainly one of the anecdotal side-effects of the steroid that I am on seems to be a surge of energy. I definitely have this at night – I haven’t been able to get to sleep before 2am for the past few days that I have been on it. I just have one more dose and that will be it… so lets see if this energy lasts.
MS is a funny disease; even when your symptoms are usually pretty consistent (as is largely the case with my Secondary Progressive MS), you can still get the odd ‘blip’ when things go a bit awry. I remember walking back home from being at my parents’ house, a couple of years ago. At that time, was able to manage the 10 minute walk with my crutches – I didn’t have a mobility scooter at that time. And yet, on that night, I managed the whole 10 minute walk without any mobility aids at all. I still remember so clearly how it felt; it felt freeing. I was like I used to be, walking without concentrating and worrying whether I would trip. I felt like all my determination to stick to the OMS programme was working, and that this was an example of how hard work can really pay off when you try. I was convinced that I wouldn’t need my crutches after that… but I did. Unfortunately, this wasn’t the new start of the ‘recovered’ me, it was just my body playing tricks. Perhaps the nerves were able to re-route themselves to make it easier for me to walk on that occasion, but the new route just didn’t stick. I don’t know… can you tell that I am not much of a scientist?!
Over the past couple of years, since that time, I have had the odd similar ‘blip’; but on top of that, my MS is still progressing and getting worse. In fact, the reason why I am on the steroids is because my most recent MRI scan has shown that, although I have Secondary Progressive MS, which is when relapses often stop, I do have some active inflammation in my brain. This means that, though the old damage is there and showing itself in my every day symptoms, there is still new damage occurring… and that is why the steroids have been prescribed. It can be easy to ignore new symptoms when your body is wracked with old, familiar ones, but I did have a few days of a numb right side of my face a couple of weeks ago, which my neuro stated sounded like a relapse… so perhaps Secondary Progressive isn’t so predictable at all, as I had told myself it was. Am I actually Secondary Progressive, if I am having relapses? No wonder it is so hard to diagnose, what a mind melt.
The reality of living with a chronic illness like MS is that there will be ups and downs. There will be these blips and I am sure that I will, at times, try to convince myself that I am getting better (even if there may be other reasons for the improvement). The steroids could have had the positive effect on my energy today, as could the fact that the kids are back at school and I have had the chance to rest over the past couple of days. The sunshine today could have had an impact and maybe the OMS programme, which I have managed to get straight back on after my little ‘glitch’ at the start of the year is still helping too?
That’s the thing; there will be these blips, there will be these glitches. MS isn’t predictable, that’s just nature of the disease. Its what we do with it and how we think of these one-offs that count. I now know not to assume that my new energy is permanent, in fact, I know that tomorrow I will most likely ‘pay’ for it in fatigue and heavier legs. But it’s been worth it, just to feel like the ‘old’ me’ for a short time. I am not living in denial; I know that MS is a totally crap disease. But if I ponder on it too long, think of all the ‘what ifs?’, it will just stop me enjoying the here and now, won’t it?
Anyway, that was just a little bit of a ramble; it’s almost 11pm and I am still wide awake – another late night ahead of me I guess! Does anyone else with progressive MS get these little ‘blips’ like I am describing? Does it happen to people with other chronic illnesses too? I’d love to hear 🙂
Very few blips But my dreams…
I am ALWAYS the old Jen in my dreams…
I love those moments where you can forget all about my MS. Glad you had such a wonderful morning!
Thank you – paying a bit for it today, but at least my house is nice and clean 😆
I’ve been feeling so glad that I have not fallen for a couple three months. I bragged to my neurologist on Tuesday. This morning I was going to Denny’s restaurant for Our MS self-help meeting. I fell on the curb and scraped up my nose and my lips and my hands and my elbows and my knees! Oh my oh my!
I had an almighty fall a couple of weeks ago too, wrecked a pair of jeans 🙁 Hope that you are all healed up ok ❤️
I am certain I will. A little sore today, but not bad thank you!
Glad you had a good day! that is wonderful! <3
I can’t wait for a blip. I’m due a blip too. Glad you had a good one and made the most of it. Great read btw j could totally relate
Thanks so much Alex – they are very few and far between and I am paying for it today, but it was nice while it lasted 🙂
I completely understand. 1 decent day then 3-4 bad ones for me is how my SPMS is going. I have to say I hadn’t had a blip in a while. But I’m waiting and hoping.
I call those “blips” good days. I have had
Those too but they are few and far between. My neurologist says I’m both SPMS and RRMS there are many patients that fall into both categories. Sounds like your like me. Btw steroids can certainly give you those “blip” days.
It does sound like we are the same, doesn’t it? It is all a bit confusing, my ‘blip’ or good days don’t happen often, but I appreciate when they do! Hope that you have a lovely weekend x
May you continue to have blips which I will call blessings. 🌹
Yes, they definitely are blessings 🙂 I shall start calling them that instead of blips 🙂
Glad you had a ‘normal’ day!. It’s difficult trying to pinpoint what’s making us feel good when we are capable of doing normal stuff one day…but then I just say, whatever it is, thank you!. It could be the steroids. I was on them when I first got sick, couldn’t sleep and made millionaire shortbread, from scratch, at 3am once!. And the weather has been beautiful which also gives us a bit of energy and positivey. Wishing you a lovely weekend. :)x
It was a great having a more energetic day – I’m paying for it this weekend though! Luckily I can chill out a bit. Hope you have a good weekend too 🙂 xx
I too loved having a bit more energy, and yep, feeling it today also!. Been nice through not doing a lot today, and the sun has re appeared!.x
I don’t have MS but I have ‘blips’ like this too. The problem with better hours or days is that I have a panic rush to try to ‘make the most’ of the energy or feeling a little better, and end up either stressing that I’m not making the most of it, or overdoing it and feeling ten times worse. It’s a shame we have to pay for living more ‘normally’ afterwards, so I hope you’re able to take time to rest and relax today. I’m still struggling to find the balance and not fret that the better times are short lived and so unpredictable. A fantastic post that I could really relate to Jen xx
Thanks so much Caz, sorry for my late response. I definitely try and cram everything in when I feel well, which can completely backfire. I had a couple of ‘flare’ days earlier this week as a result of all the extra energy that I used up last week. It’s finding that balance, which is tricky isn’t it? Xxx
It’s definitely a tough one, with constant up and downs that you either ride out fairly well, or struggle to with frustration. The key is that we keep going, that we don’t give in and not do things because we’re worried of feeling all the more awful for it, but to keep working at getting a better balance. I hope you have a restful weekend ahead, Jenny! xx
You too Caz 😊 xx
I am sorry I am a little delayed with my comment. I am so glad you had a good day! I think I might be due for a blips soon! It is amazing what MS can put us through and yet we still manage to get through it with so much determination! Jen, I think you are a pretty amazing lady and I am SO happy I have been able to get to know you! I hope you are feeling well today!!