The builder popped over to see me after work the other day. I was on my sofa, floored by MS fatigue, snuggled into my duvet, watching trashy tv.
As soon as he walked in and saw me, he took a step back, a look of dismay on his face, ‘God, I feel depressed just seeing you there like that.’
If he’d slapped me across the face with a wet fish, it couldn’t have hurt more. I protested, made a joke about it, but it touched a very raw nerve.
I don’t want to be depressing. I don’t want to be that person on the other side of an invisible divide. I saw myself through his eyes and didn’t like what I saw. MS has shoved me under ice. I look the same, but I’m trapped, banging on that ice, yelling pointlessly for my friends on the surface to hear me.
I’ve had to absorb a lot of changes into my life since MS smashed into it like an unwanted gatecrasher at my party. Some of them are huge, but most are small changes I now take for granted – the afternoon naps, the slower pace of walking, the brain mush. To me they are now normal. But seeing myself from someone else’s viewpoint brings me up short. I can see just how much I have changed and I hate it.
Before MS, I was always on the go. I travelled the world, had incredible adventures, and I’ve been strong, independent and vibrant. Looking at myself now, I can see I have I’ve become a shadow of that. My house has become my refuge and I spend far too much time in it. It is comforting. No one can see me trip, hold on to the banisters, drop another glass. I feel safe here.
I know the builder didn’t mean to hurt with his comment. I probably needed to hear it. I want to get my zest for life back. MS is a hefty ball and chain to drag through life, but at least if I’m facing forward, I can’t see it, even though I know it’s there.
At the moment I am standing outside the party, nose pressed to the window, watching everyone else’s lives unfolding. It’s about time I joined in again.
My partner has MS and like you a few years ago she was all go, up and at it, grabbing life by the tail and enjoying the ride. She too is forced to slow down, and tends to stay in the house far more. She appears to be coping very well, it’s me that seems to struggle with it all, I hate seeing her like this. I struggle to remember to bite my tongue and not comment on the changes in her behaviour. I hate what MS has done not just to her me as well.
Hi Ian,
Thank you for your very moving comment. It must be so hard for you both. MS changes the dynamics in every relationship I think – parent/child, partners, friends.
Part of me is ‘happy’ I’m single, so I don’t feel a burden to anyone else, and I try to hide the full truth from my son. I’m guessing I’m also resigned to staying single for the forseeable future too.
It’s strange about staying in the house more. On the surface, I am physically fine(ish). It’s more the worry – if I go out, will I suddenly get tired, too hot, too cold, will the foot drop start again. So it seems easier just to stay safe at home.
I would be really interested to hear more from you if you like? Too often we forget the toll MS can take on partners – an invisible voice in some ways.
X
This had me in tears -and I’m not a crier. After a few months of relative normality, I’ve been plunged right back into the pit ( cess or otherwise) that is a ‘relapse ‘. I stupidly hoped it would never come, but, oh bliss oh bleeding rapture -here it is folks! You summed up my mood perfectly, and whilst it may be strange to say ‘Thankyou ‘ for expressing negativity, it is cathartic and therefore helpful.Hope we feel ‘fighting spirit ‘again soon.
Hi Debra,
Aren’t just relapses just (insert appropriate swear word here…)?? Touch wood, I haven’t had any relapses since last May, but it doesn’t stop the exacerbations or the daily grind of ongoing symptoms.
One day up, one day down. Forget long-term planning. ‘Can I let you know?’ is my most common phrase.
I think in some ways the builder did me a favour. I probably get too wrapped up in how I’m feeling, how I’m coping and forget that other people are affected too. I’ve known the builder for 9 years and I appreciate what he says to me – he’s not one for speaking his emotions, so when he said that to me, I listened.
We will definitely feel the fighting spirit again! I think just being in touch with other people affected by MS (whether you have it or know someone who has it) is hugely important and leveling.
In it together!
X
Hi,
You’re right MS is a real ball and chain. I used to be able to do so many things but now I’ve accepted the change and stopped fighting it. I have discovered a whole new world out there. I’ve started up my website which is becoming a business, go networking, joined toastmasters and I am involved with other things but all at my own pace.
I used to be a rugby coach for the minis and the in-phrase was ‘Use it or lose it’. That also applies to MS. Yup the duvet is warm and comfy, a nice secure refuge and it is a layer of insulation. Make the effort to do things that you didn’t or couldn’t do before. It will be an effort and there will be occasions when you won’t want to. Rest assured you will feel the benefit.
I’m not nagging you. I’m sure you will feel better even if its just knitting socks. I was a real get-up-and-go bloke and MS has continually chipped away bits of my life. I have lost the ability to do so much but I still manage to do a lot. Go on give it a go.
Good luck,
Patrick
Hello Patrick,
You speak amazing words of wisdom! You are absolutely right – my duvet is my insulation, my safety blanket and symbolic of my desire to hide from the world.
When the whole MS thing started, I was adamant I would start doing things I have never done before. It started well but seems to have tapered off. I spend most of my time monitoring how I am feeling/running the house/studying/working rather than pushing the new boundaries.
I don’t think you are nagging me at all – I appreciate it more than you can know!
Thank you for the kick up the jacksie!
X
Can’t wait to hear about the ‘new boundaries’
When I rustle some up, will let you know! Am thinking of drawing up a new list of ‘things to try now dratted MS is in my life’…
X
Oh, SIF, please don’t be too hard on yourself. The ever-changing face of MS makes it hard, if not impossible, to ever fully adjust to. You’ll have good and not-so-good days. On the good days, try to get out of the house and see a friend or so something fun. On the not-so-good days, cozy up under the duvet and watch trashy TV. And don’t berate yourself for it. That said, and I’m speaking from personal experience (as in, happening right now), it’s far too easy to get lulled by the comforts of the duvet and TV, until that becomes a habit, while life goes on outside your window. Now, while you (and I) can, live as fully as possible. This disease is so unpredictable, and you just don’t know what tomorrow or next month or next year will be like, and you may look back on this time and think, “I wish…”
I apologize for the irritating soapbox speech. As I was typing it, I realized I was really talking to myself. There’s too much I’m letting slip by me because I’m tired or worried, and it just seems easier to stay in my comfort zone. One day I may not have a choice about getting up and out – even for a nice walk around the block.
Your post wasn’t depressing; it was inspiring. Thank you.
CrankyPants,
I think you are totally right – I have created a new habit for myself. I need to break out of it! It’s all about staying in the comfort zone – it’s a known quantity and good to have when everything else is so uncertain.
As I said to Patrick, I am going to push myself more. Even just a teensy bit to start with.
And it all starts here…
X
p.s. off to do that list. I did write one for my new year resolutions, but that seems to have flown out the window.
wanted to quickly update you after my irritating response above. I was so inspired I vaulted right upstairs and took a shower, planning all of the things I was going to do. First thing I did was play a game on my phone. Then I decided I needed to eat. While I was eating I turned on the TV. What’s this? That highly acclaimed movie “Motel Hell” is playing? Must watch. Out came the giant bag of jellybeans. And…here I sit! So ignore all of the rubbish I said earlier. I am the lamest of the lame.
ha! You can’t blame that on MS, Ms CrankyPants. Full marks for trying though! is that another massive bag of jellybeans? Like you had the other night??
X
PLEASE let me blame watching this crap movie on the MS. Impaired judgment?
p.s. yes, same bag!
Ok, I’ll give you that. I also find myself watching dumb-dumb made-for-tv films, so MS is a pretty handy excuse! That is probably the biggest bag jellybeans I have ever seen (Ms Cranky posted a pic on Twitter). I too, have an exciting bag of sweeties, but I ate my dinner first 😉
X
It’s funny you should post this today (well not funny ha ha, you know what I mean….)
I work in a large company where not many people know I have ms. They know I’m a runner though (well, more of a shuffler these days). I used to enter loads of crazy races covering all sorts of stupid distances. I walked into the canteen today where a group of guys starting quizzing me about my latest antics. I know I could’ve just said I was injured or taking a break but for once I was lost for words. I didn’t want to lie but couldn’t face telling them my “news” so instead I just shrugged and said I might enter something later in the year. I went back to my desk and felt miserable for the rest if the day, I know I was rude to them but I didn’t want to bring on any waterworks. It seems to me, that no matter how much time passes and you think you’re fine with everything, it has a habit of slapping you in the face when you least expect it. I know I shouldn’t moan as it could be far worse….. I think the idea of a list is brilliant – good luck with yours and I hope you have a better day tomorrow.
I shall be spending the evening with friends drinking copious amounts of wine x
Hi Jenny!
It’s very odd, isn’t it?? I would say most of the time, i’m ‘fine’. My physical symptoms are minor compared to a lot of people, but there is just this underlying monster who pops up now and again and grabs me by the throat. If that makes sense! For me at the moment, the fatigue and brain fog are the worst things and the two go hand in hand.
Tricky situation you have at work? You don’t want people’s perceptions of you to change just because you’ve got MS. And I think this is the problem I have with the builder right now. He can’t reconcile the old me with the new me. I’m still essentially the same person, we’re just now miles apart because of this invisible wall.
Anyway, enjoy the wine, raise a glass for me!
X
p.s. just remembered, I DID do something different today – I called and booked in a chimney sweep at work, for the first time. I didn’t know they still existed, lol. I though the builder was playing a practical joke when he asked me to google one.
Having studied the postings re : c*!p movies and m.s.,methinks there must be an as yet undxd link. I too find myself watching otherwise intolerable films that, in ‘normal ‘ circumstance I would cringe at finding myself not just watching but actually getting emotional about. Can we claim disability benefit for this?
You could be onto something there Debra. We must bring this to the attention of our MS nurses, lol. I have just sat through a Jodi Picoult adaptation, Tenth Circle. What a pile of poo. Yet, I welled up and had a lump in my throat. So, yes, I blame MS. Not sure where the jellybeans fit in though…
X
p.s. I think we should definitely cite impaired judgement on our disability claims, and give film titles as proof. And any sweetie wrappers!
Oooh, yes, there MUST be a link. The number of horrendous movies I’ve sat through (while thinking, “what a horrendous movie”) has increased dramatically. I’m blaming the MS, not the fact that I’m unemployed. I DEMAND RECOMPENSE AND AM SUBMITTING A BILL TO MY INSURANCE AT ONCE! If I shout, it lends authority to my claim, I think.
p.s. SIF, the jellybeans play a key role in all of this. It’s far too complex to explain now. My brain is weary from the intricate plot and snappy dialogue from “Motel Hell.”
You must also stamp your feet, just like I do when the builder refuses to feed my bacon buttie addiction. The petted lip also works. And singing very badly.
X
p.s. I think that is a NEW bag of jellybeans. I think you just like to pretend it is the same bag, lasting all week.