Do What You Can

Do What You Can

One of the hardest things I’ve had to accept with MS is the necessity of asking for help.

Pride and self-reliance dissipate remarkably quickly when you find yourself splayed on the floor and you no longer have the capacity to get up.

In extremis, I then ask for help. But if I’d asked earlier, the whole farrago probably could have been avoided. This lesson took a while to sink in; indeed, I’m not sure I’ve made it out of kindergarten yet!

Kindergarten. Yes, this disease does infantilize.

I can no longer put on my shoes. Each new strategy to do so worked for a while, but eventually, they all failed. I suppose that if I started the day before, I’d have a chance. I’d forget why I was putting them on, but by then the challenge would be enough.

I still find it weird as a 61-year-old bloke to watch my 22-year-old son slapping them on in seconds.

Hey, I used to beat him at tennis. He was only 8, and I didn’t have MS yet. Give me a break; it was still becoming increasingly difficult!

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So, yes, I’ve become more receptive of asking for help and not feeling guilty. It’s not any fault of ours, we’re just dealing with the cards that life has dealt.

Yet, I don’t only have to be the one who is helped — I also can be proactive.

As my illness progressed, my chores shrunk. Mowing the lawn went very early, which was annoying because I’d put together the mowing machine from a kit. Yes, that’s why it was so cheap. Still, it had taken me a few days to do, yet it worked for years. Indeed, it definitely outlasted me!

The last thing to go was Washing King. In truth, I had so many methodologies that they had become peccadilloes. I think I was a bit obsessed. MS saved me. Ironically, washing made me need to clean up my act.

The one thing I can still do, and indeed have become better at, is the whole internet thang.

Going out shopping is a rarity; weekly shopping on the net isn’t. And the more you do something, the more adept you get at it. I still make the odd mistake, usually about the size of something — such as a shampoo bottle that would only look normal in Lilliput.

Now, that is a bloke problem: We always think things are bigger than they are.

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‘In 1982 John Connor was a stand up, sketch writer & journalist – crap at all three he decided whilst watching a man performing with a paper bag on his head that as nobody else was going to write about stand up he would’. ‘Comics’ Papermac 1990. In 2009 John Connor was diagnosed with MS. In 2017 John Connor still produces/directs his own live 27 year old resident topical comedy show at London’s Comedy Store – ‘The Cutting Edge’. He was also a leading UK Casting Director specialising in comedy – including one of the hippest shows ‘Black Books’ [double BAFTA winning Situation Comedy Award] & for at least a decade the biggest sitcom on British TV ‘My Family’. TV & MS was a step too far – and we know how hard any step can be. Luckily his satirical show was a built in part time job & with the election of Trump is now in the zeitgeist. John now writes “Fall Down Get Up Again” – an irreverent journey with MS.
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‘In 1982 John Connor was a stand up, sketch writer & journalist – crap at all three he decided whilst watching a man performing with a paper bag on his head that as nobody else was going to write about stand up he would’. ‘Comics’ Papermac 1990. In 2009 John Connor was diagnosed with MS. In 2017 John Connor still produces/directs his own live 27 year old resident topical comedy show at London’s Comedy Store – ‘The Cutting Edge’. He was also a leading UK Casting Director specialising in comedy – including one of the hippest shows ‘Black Books’ [double BAFTA winning Situation Comedy Award] & for at least a decade the biggest sitcom on British TV ‘My Family’. TV & MS was a step too far – and we know how hard any step can be. Luckily his satirical show was a built in part time job & with the election of Trump is now in the zeitgeist. John now writes “Fall Down Get Up Again” – an irreverent journey with MS.
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12 comments

  1. Kristin Johnson says:

    I certainly agree with everything you wrote. I remember a few years after diagnosis watching “Dancing with the Stars”, marveling at how the couples were able to do what they did. I no longer had the ability and worst yet, no memory of ever being able to dance. I am still able to visit Costco occasionally, but am thankful for Amazon Prime and home delivery of so many items. My rugged electric scooter gets me out in the woods, and that is a nice way to view the local scenery. We put in a therapy pool, a substantial hit to the budget, but what a wonderful treat during our long winters.

    • Dg says:

      Yes please do thank u. Since we all suffer different and these doctors do not listen to us please keep writing and I wish you pain free days I just wish I’d remember writing this in 10 mins from now 😂💖💖😘

  2. It’s hard to ask for help.l did things for people who I thought were my friends and they disappeared. Never charged them. That’s what friends are supposed to do. I will only do for children and the elderly now, whatever I can still do. I still can walk, barely but I keep going dreading the day I will need a wheelchair. I have always been a giving person but beware of so called friends. I never was one that asked for help and I the time I did nothing was done. Even worse, these so called friends are fellow firefighters.

  3. Doug Tagg says:

    Thank you John Connor for sharing your experience. I too share your age level and many of the emotional gymnastics in dealing with the day to day challenges sandwiched together with the sometimes agonizing thoughts of what I used to be able to do. I go through my mental list of the things I did before the MS D Day and my new life post the “why me” moment of no return. It’s difficult to let go of this stranglehold that keeps me from living this new but tainted life. I finally found new ways of dealing with this unwelcomed visitor in my life including Amazon and Paratransit to name al few. It’s a challenge every day but we just on going on hoping for a better next day, like I did before, whenever I had to meet a challenge in my life that at the time seemed hopeless.

    • Dave Uherek says:

      Blessing to you. Hang in there, it is worth it mentally and physically. I have been down that dark and lonely road where it is difficult to just stand still long enough to get your belt on not alone take a wiz! Ha!Ha! It was mentally tough to become a wall walker. It hurts to sit, however that’s about all I can do! Ha! Ha! Again, gotta laugh. Oh well! Godspeed to you. Stay on our team and please let me know when you hear some good tidings. Adios. DCU

  4. cynthia says:

    love your great sense of humour , John….it’s what gets us through , eh ?
    keep on ”keepin’ on ”
    thanks for your posts

  5. GARY SHAMBLEN says:

    Yes, I certainly agree John. I think back and remember telling myself “well if this stuff doesn’t get any worse than this I’ll be ok”, but it did. I’ve gone from doing the light farm work, landscaping our home, driving my truck and trailer, hauling horses half way across the US to typing online left handed one handed.

  6. Mrs. Paul Odegaard says:

    I want to thank John and all of you who shared your feelings and circumstances. I am new to this group but an ‘old-timer’ to MS, having been diagnosed in 1982 when I was a busy 34 year-old mother of two toddlers. The youngest had just been diagnosed with a severe mental impairment as well as Autism, so my life became very complicated and demanding. Fortunately, my MS went into remission and I was able to resume my new life. I now use a cane but continue to take one day at a time and begin each day with prayer. gratitude

  7. Gale Langseth Vester says:

    Thank you for writing here, as it’s kept me (and many many many others) on an even keel as we forge on through choppy waters.

  8. Janelle Louge says:

    I have a different problem. I have secondary progressive MS. I move slowly and have a walker. I don’t need help most of the time, but when I do, I ask. My problem is that I don’t want everyone to help me all the time. I am a private person and I have never liked people helping me, even since I was a little kid. One thing I’ve noticed about people helping you is that a lot of people keep score and if they help you, they feel like you owe them. Some people seem to be trying to buy their way into heaven. I don’t want any part of that. I hate it when I have someone coming up behind me run to open the door when I can open it myself. I hate it when people just assume I need their help. What I wonder is am I really obligated to accept help from people? I’ve had people get really angry with me when I told them I didn’t need help. The other day some people wanted to hold open an automated door for me. I don’t like people holding doors open for me because I move slowly and they have to wait for me. So I said, “It’s an automated door, you don’t need to hold it open.” The woman glared at me and said they were just trying to be nice and next time they wouldn’t help. I said that was fine, I didn’t need help. I always end up apologizing to people because I move slow and they have to wait. They invariably say, “Oh, that’s OK, just take your time.” My comment that I don’t have any choice about taking my time is confusing to them. It’s tiring. It’s bad enough I have this stupid disease without having to be embarrassed daily by everyone having to hold the door open for me, or asking if I need them to put my groceries on the counter at the store. I’m glad they get a charge out of helping, it just depresses me.

    I have another question about treatments. I don’t do any of the current treatments because I have the JC virus, and I don’t want to end up brain dead. I use biotin and alpha lipoic acid, honey, vitamin D. Does anyone know where to get bee sting therapy? I’ve watched some videos on it and I’d like to try that. It seems to work. If you have any information on that, please let me know.

    Thanks

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