I was wandering around the supermarket yesterday and accidentally went down the Baby aisle.
With the last 18 years of bringing up The Teenager fresh in my mind since taking him to Uni, I felt a bit of a pang.
I gazed upon the rows of feeding cups, teeny tiny outfits, creams, ointments and the inevitable ‘How-To’ books.
Someone once said to me, when I was heavily pregnant and reaching for my second ice cream sundae, that babies don’t come with an instruction manual; probably the best piece of advice I’ve ever had.
In a way, having a child and being diagnosed with MS are weirdly similar, and having been through both (and survived to tell the tale), I can quite confidently say, ‘MS does not come with an instruction manual.’
In the beginning, I thought it did. Similar to being pregnant, when I was diagnosed, I was bombarded with stories (both good and bad), told to do this, told to do that, take this supplement, eat this raw bark by the light of a full moon. I read endless articles online, mostly grim, and I envisaged a similar future. The few positive stories involved wildly expensive treatment and/or jumping out of a plane for charity.
When I had The Teenager, I constantly referenced books, other people, forums, random strangers – ‘why won’t my baby stop crying?’ Whilst the deluge of advice was welcomed, it wasn’t helpful. Just like MS, every baby is unique. What worked for me (draping my baby over my arm and rocking him in tune to The Verve, a completely accidental occurrence), didn’t work for others. We found our own groove through trial and error.
MS has a virtual cornucopia of symptoms and none of us are the same, just like those tiny week-old humans. You can read as much advice as you can, you can pin your hopes on a miracle cure, just like I did to cure The Teenager’s colic. Nothing worked until I found my own solution to our own unique problem.
Being diagnosed is about finding out what works for you. Your symptoms will nudge your life in different ways, to cope with various symptoms, be it fatigue, cog fog, mobility and all the rest. When you seek advice, take what you need from it and discard the rest. It’s your life and your life with MS is not the same as anyone else’s.
I’ve found my MS groove, just as I found my Baby groove. I don’t drape myself over anyone’s arm, but I’ve re-calibrated certain aspects of my life which work for me, but which I would never foist upon anyone else.
I know when to sleep, when to do paperwork, when to shop, when to go to work. I know when to be extra careful going up or down stairs and I now know how to cope with dark days. All this works for me, but probably won’t for you.
Examine your MS and find out how to play it. It’ll take time, trial and error and blind alleys.
But you will find it.
This is so true! Lately I’ve been trying to hack MS through diet. I’m starting to conclude that there is no one MS diet that will turn everyone’s disease around. There is this amazing movie coming out, Living Proof, starring this buff guy who has had MS for decades and looks like a GQ model and attributes his good health to his diet/exercise plan. Then I opened Terry Wahls’s book about her turnaround through diet/exercise. As it turned out, she’d tried the first guy’s diet and that one didn’t budge her out of her recling wheelchair, so she’d had to tinker more until she figured out the program that eventually saved her. It’s complicated. Not to mention, we’re all also aging and will die, no matter what diet/exercise program we cook up. We just do the best we can. And everybody’s best is different.
That’s such an interesting comment, thank you!
It’s all about tinkering (love that word) to find out what’s right for you and not blindly following something that someone has said worked for them.
Also love ‘everybody’s best is different’ – hit the nail on the head!
Thank you for this. I’d also add that other people’s expectations come in to play…Through my sister I’ve come to know a woman with MS. I don’t know her well but my sister has frequently told me about how her MS doesn’t affect her at all. She works in a pharmacy, is on her feet all day, has a fabulous social life and generally is so well. The last time I saw her she wasn’t walking very well and needed a stick…I said to my sister ‘so the MS has finally got her’ perversely a bit smug. My sister said ‘no she’s had 2 hip replacements, otherwise she wouldn’t have a stick.’ Nothing is meant by this I know but I think that people are thinking ‘what is wrong with you?’ I took early retirement from work and do not have a hectic social life by any stretch of the imagination. Then there’s my neighbour who also has MS. I don’t know her personally but spoke with her father at a fundraiser that she had organised to raise money for MS research. He told me she had cycled 60 miles the previous day, had organised this fundraiser for approx. 70 people with food etc. He said she planned to cycle 50 miles the following day as well and performs in a singing group and they practice once a week at least. He then went on to say that ‘after that she’ll be very tired though’. I don’t want to feel anything but admiration and happiness for her but the evil side of me is thinking that other people are thinking that I should be doing a lot more than I’m doing and that I’m just being a lazy so and so and then I go on to think maybe that’s what I am. And indeed maybe that’s what I am…
Not proud xxx
This is one of my absolute bugbears about MS, and you are most definitely not lazy!!
Exactly what my blog post is about – MS affects us all so totally differently. I too know of people with MS who do the most incredible things, things even people without MS would struggle to do.
It’s very sad when society measures each of us with MS up against each other, as if there’s a blanket standard. Some people want us to slink away in to the shadows and stay there whilst others expect us to be skydiving and climbing mountains. There doesn’t seem to be a happy acceptance that we’re all different and we’re all different people living with different aspects of MS.
I felt very sad reading your comment – please don’t be disheartened by what other people think you should be doing. You’re living and coping with MS – that’s more than enough 🙂
Oh thank you but would also like to add one thing…and in this I am only speaking for myself but others might feel similarly. It is a little bit about society’s expectations but it’s also about how I am myself about my disability. I make certain presumptions about how others see me and these may be valid but also might not be. I couldn’t believe it when a doctor agreed that my disability was a serious one even though I did not exaggerate one of my symptoms.
When I was working I was the one who made the coffee (it seems like such a little thing – but that walk from the office to the kitchen and the return journey was sometimes so hard). Why did I feel I had to ask everyone if they wanted coffee and then be so resentful when they said they did.
Why do I still feel that I’m fraudulently claiming a pension even though a panel of doctors said I was unable to continue work. I never claimed any welfare payments in my life until now and it doesn’t sit comfortably with me.
There is just one last thing and this is a different point and about my work place. Others may have similar experience. I worked as a social worker and was employed by the council. I was able to take sick leave that others working in different organisations or self employed perhaps could not. However while this sounds wonderful and of course in many ways was, nonetheless while I was on sick leave my work didn’t get done so taking sick leave was more stressful in many ways because of the work load that awaited me on my return. I still had the same amount of families to see and within the same time frame as the other social workers. However the families were more irate because of my non availability for a couple of weeks.
In my career working for the council I took in 15 years one sick leave period of 8 weeks and other than that my attendance was more or less perfect. If I did not find return from sick leave so stressful perhaps I could have been able to continue working.
So I guess it’s a mix of how we feel ourselves and how society/work treats us…give me a choice and I’d prefer to not have MS and work forever…think this is a slightly confused post…so hope the points I’m trying to make are not lost completely. I enjoy your all embracing approach to MS and it’s so uplifting to read your blog…x
I do think I know what you mean. It’s a bit like when I saw my GP early on in MS and had to run through my symptoms – suddenly I was aware of just how ill I actually was.
Also, I’m caught between looking well (on the outside) whilst dying slowly on the inside. I’m either treated as fully disabled, due to my label (and spoken down to) or treated as a fraud because I don’t ‘look’ disabled.
As for you being a social worker – hats off to you! I worked as a PA in a social services directorate in London and saw almost first-hand the pressures the social workers were under. It was awful to witness. To be honest, I don’t think many people with MS could cope with such a demanding job. I know that’s a sweeping statement and others might disagree, but I’ve met several social workers with MS and they all want/need to get out, for their own sanity if nothing else.
Someone once asked me what my biggest symptom of MS is. I replied, ‘society’.
The second paragraph you wrote in your comment to Teresa puts me in mind of one of the verses I wrote in a poem about MS which is –
Yes, I can cover the cracks
And smooth them out quite well.
So no-one will ever know,
I’m living through my hell.
Until we walk (or shuffle) we do look well, but there is so much emotion going on underneath the surface that we don’t show to even our loved ones.
That’s beautiful and so true, thank you for sharing with us!
It neatly captures the reality of living with something like MS.
I read your post and I found it really good. Just to go off on a tangent…….I was up at a seaside resort recently where mum, dad, big brother and ME used to holiday. We usually stayed in a guesthouse and went to the amusements there…That was the REAL treat! the ghost train,dodgems and all that…..I’m not sure if there was a Mexican hat (if there ever was such a ride in the first place!) but…what gutted me was….THE HELTER SKELTER….GONE! Why!? ……here’s hoping it was for maintenance? Maybe next year it’ll be back
Friction burns or not
I love your comments – totally random!
Such a shame the helter skelter is no longer there, hopefully, like you say, it’s in for repairs!
all so true. 5 years down the line and im just getting the hang of this ms lark … but it’s so hard sometimes. I don’t make a habit of announcing every symptom etc when someone asks me how I am so they all think I’m doing great even though I might feel crap! I don’t want a load of pity but I also want people to know ms can be a real challenge… very fine line ? Hope the student is well settled x
It truly is a fine line!
I’m really happy to report that The Teenager is having a whale of a time at Uni – he’s made loads of new friends and has quickly found his feet. I get random texts about what he’s up to. It makes the whole transition a lot easier for me I think, to know that he is happy and embracing his new life. I know a lot of students struggle, but I think he’ll be ok, touch wood. Hope all ok with you!
All good here thanks .We are doing the student drop off to Newcastle on Friday … all very exciting ? Glad it’s all going well in Bristol! The freshers wristband has been purchased here …. I fear for her small liver? but am secretly envious of the crack she’s going to be having…such a nice time of life I always think xo
Good luck with the drop off!
You’re right, such a lovely time of life. So many options and the world is their oyster 🙂